Pre-Transplant: ECMO Machine | Pneumonia | Anaphylactic Reation | Ventilator | Transplant |
Post-Transplant: DAY 1 ("Star Pupil") | DAY 2 (Off Ventilator for 5 Hours) | DAY 3 (Trach Mask) | DAY 4 (Grand Mal Seizure /
Ripped out feeding tube) | DAY 5 ("out of it") | DAY 6 ("Coca Cola Cleanse" | DAY 7 (estimate another week on ventilator) |
DAY 8 (2 Grand Mall Seizures) | DAY 9 (Grand Mal Seizures) | DAY 10 (Fund-raising Event) | DAY 11 (Alert) |
DAY 12 (Walk around the Block) | DAY 13 (A Bath & Feeding Tube Inserted)) | DAY 14 (Finally "REAL" Food / Moved to Step Down) |
DAY 15 (Drainage Tubes Removed / BP down to normal) | DAY 16 (TGH STAFF BELIEVE THEY CAN CURE ALLERGIES!) |
DAY 17 (Feeding Tube and Catheter Gone! | DAY 18 (Lights on / First "Corn Pill" | DAY 19 (Not Sarcoidosis / Visitors!) |
DAY 20 (No more Trach / Shower! | DAY 21 (Merry Christmas) | DAY 22 (No Signs of Rejection) | DAY 23 (First MEDS Class) |
DAY 24 (Good News - Rehab Soon) | DAY 26 (Trial w/o Oxygen) / More Issues with Corn-Containing Meds |
DAY 27 (Pharmacist to the Rescue | DAY 28 (Good start to 2014) | DAY 29 (Physio Application Submitted) |
DAY 31 (Regular Walker / Pathology Report) | DAY 34 (Incentive Spirometer) | DAY 36 (St John's Confirmed) |
DAY 37 (No "Female" Beds Available) | DAY 38 (Post Transplant Coordinator) | DAY 39 (Good Workout) |
Rehab: DAY 1 (Move to St. John's) | DAY 3 (No Chair Bike) | DAY 4 (OT & Physio Today) | DAY 5 (Looking Good) |
DAY 7 (Saw Toby Cat) | DAY 10 (Another Bronchoscopy at TGH) | DAY 11 (Still Recovering) | DAY 12 (More O2 Last Night) |
DAY 13 (First Outing) | DAY 15 (Water Pills Added) | DAY 17 (Release Date: Feb 3rd) | DAY 18 (Residence Inn Booked) |
DAY 22 (Last Day of Rehab) |
Post Rehab: DAY 1 (Finally at Residence Inn) | DAY 3 (A Real Bed) | DAY 4 (Ready for a Games Night) | DAY 9 (Walking w/o O2) |
DAY 12 (Family Visited) | DAY 18 (Walked 1.4K with Walker) | DAY 21 (Options for This Story) | DAY 22 (Effective Anti-Nausea Drugs
only for Cancer Patients | DAY 23 (Naivete) | DAY 25 (Pressure) | DAY 26 (Bronchoscopy Monday) | DAY 29 (Clinic Tests) |
DAY 30 (No Bronch) | DAY 34 (Slowly Recovering) | DAY 36 (Trying to Exercise) | DAY 37 (Post-Transplant Lymphoma |
DAY 38 (About Lumphoma) | DAY 39 (Needle Biopsy) | DAY 41 (10 Biopsies) | DAY 47 (Still No Diagnosis) | DAY 49 (PTLD) |
DAY 55 (Another Bronch) | DAY 57 (Bronch Went Well) |
Cancer Treatment: DAY 1 (B Cell Lymphoma) | DAY 3 (Update from Leslirae) | DAY 8 (Hemotologist) | DAY 9 (First Cancer Treatment) | DAY 19 (Cancer Growths Shrinking) | DAY 34 (Update) |
DAY 34 - CANCER TREATMENT - May 10, 2014 - From Leslirae: We saw the neurologist on Tuesday. He looked at the MRI of what he called Dew's brain injuries from the Cyclosporine that caused her seizures after the transplant. We could see the large areas of her brain that were lit up in bright yellow as the damaged areas - a lot more and a lot bigger than I had imagined. First he said that it was a typical picture of PRES (Posterior reversible encephalopathy syndrome) and Dew said, "Really?!, I have something typical and not abnormal?" but then he said, "No, it would be normal if you just had them in the back of the brain, but you have a lot in the frontal lobes as well".
He felt there was no point in redoing an MRI yet. He said it would take at least a year to heal the lesions, if indeed they do heal. So he wants to do another MRI in December. He asked somewhat scathingly if Clobazam was the first choice of TGH's neurologist in December when Dew first got the seizures (this neurologist is at Toronto Western Hospital) and I explained that it may not have been, since they had to find an antiseizure medication that did not have corn, gluten or lactose. He was surprised that Dew was on such a low dose and we were hoping he would say she could discontinue it now, but he said to stay on this low dose until after the MRI in December. If the brain lesions have healed, then maybe she will be able to stop that drug by then.
Dew had her last chemotherapy anti-B cell IV treatment the same day she saw the neurologist (except that was at Princess Margaret Hospital instead) and she had to get blood tests done at Toronto General Hospital before that. So now we are running between 3 hospitals instead of 2.
Supposedly she is to start what they call CHOP chemotherapy in 2 weeks - the really nasty chemo - a toxic soup of 4 poisons. The oncologist said she has to take CHOP treatments intravenously for 3 months regardless of what the CT scan shows after this last Anti-B cell treatment (since once the anti-B cell treatment ends, he says the leukomia will just start growing by leaps and bounds again. However, I would be willing to take bets that they don't start the CHOP until after the CT scan which has been delayed until the end of the month - which further delays Dew's treatment which was supposed to start 2 weeks after Tuesday May 6 (which would be May 20). I suspect it will be at least a couple of weeks after the CT scan has been read for the CHOP treatments to start. Last week the oncologist was not there - they said he was ill and there was considerable confusion about everything, given his absence. We were explaining his treatment plan to his interns who were in disarray in his absence. Hopefully he just had a minor flu or something and is not seriously ill as he seems like the only one who really knows what is going on (at either hospital).
This weekend we returned home for the visitation and funeral of Dew's dear friend Marie-Claire's father, who is already very sorely missed. The funeral was today. Last week we arrived to see him in the hospice on the day he died. Dew was there from 4 until 9:20 pm and he died perhaps just before 10 pm. While he did not seem to be responsive, his family said they could detect slight smiles when we were talking of things he had done when he was younger. Marie-Claire's mother and Marie-Claire thought that Karl had waited for Dew to come before he died. On the previous Monday, his last lucid day, he had continued to ask about how Dew was, and had said that he "would not object" to a visit from Dew, provided it would not jeopardize her health to make the trip, after she said she wanted to come to say good bye, which was his way of saying that he would very much like to see Dew again.
Marie-Claire's mother had been a nurse and suggested to Dew that it might be a good idea to cut her hair before the really bad chemo treatments start so it would not be such a shock when it all falls out. So on Tuesday on the way back to our room in Toronto from the Toronto Western Hospital, we stopped and had her hair cut by about half its length. I will probably cut it all off when she starts the CHOP chemotherapy, but Dew didn't trust me as a hairdresser when there are still a few weeks before that happens!
Dew has had to decrease her exercise somewhat in the last couple of weeks as her big plastic clogs are not up to the job when she is exercising. We need to get her exercise shoes that won't cause too much pain from the neuropathy on the tops of her feet, but all of her old shoes hurt too much and the big plastic clogs are not safe for the treadmill etc. The physiotherapists are trying to have her slowly wean off her walker and onto a cane for balance and support when walking. She is still rather unstable, but slowly improving. She does much better with the walker, but needs to be able to let it go eventually as she gets stronger.
The pain in her sternum, which makes it difficult to lean forward, has finally been detected on a CT scan (the two broken pieces of bones are offset instead of meeting in a flush position -- which may make the healing of the bone difficult. The Doctors at TGH said that maybe they could surgically correct it somewhat, but it can not be done while she is so very immune compromised. (She will always be immune compromised, but the chemo makes it much worse.) They also have finally started to take seriously the agony she goes through with abdominal pains almost every day. So they are going to finally schedule some tests to see if they can see anything.
Dew is in more pain now as she has stopped taking the pain medications for fear of addiction. She said she probably would have continued if the pain meds helped her neuropathy -- but they don't.
DAY NINETEEN - CANCER TREATMENT - April 25, 2014 - Exhausting day - people in the treadmill room told me I looked terrible today. However, I did get good news at clinic: according to the CT scan the small nodules throughout my left lung have cleared up and the largest mass in my right lung has shrunk from 11.5 cm to 6 cm.
DAY NINE - CANCER TREATMENT - April 15, 2014 - So the treatment went okay today - I felt a little yucky during it but not too badly at all. I also ended up sleeping for most of it, at least four hours, I haven't been sleeping well at night so that was fantastic. I then went and did my exercise - I think the big dose of 'roids in the morning enabled me to do it (not to mention the nap). I feel slightly itchy - but there is no rash or hives, so next time they can give it to me much more quickly - I think in around 2 hours instead of 5.
DAY EIGHT - CANCER TREATMENT - April 14, 2014 - So, I saw the hemotologist today. He felt that since the shrinkage of the one tumour was only small that we should go ahead and start my treatments tomorrow of a drug called Rituximab. The rituximab targets and kills b-cells, and it is given to me at the chemo centre at the Princess Margaret Hospital - the first treatment is 5-6 hours long! He also wants me to take a big dose of prednisone right before the treatment - not too happy about that but it will be a two time thing (this week and next).
Detailed Update from Leslirae
DAY THREE - CANCER TREATMENT - April 9, 2014 - From Leslirae: I have had requests for another more lengthy post outlining the situation as I see it. So although Dew is doing the posting now, I will put in my two cents again.
Dew has 4 large tumours in both of her lungs and several small nodules as well. These went from undetectable to very large within about 10 days and continued to grow more and larger from February until April 7 when the last chest x ray on April 7 may have shown a very slight decline in the size of the largest tumour only. Further observations will be needed to confirm if it is actually shrinking and whether the others are also starting to shrink.
As previously mentioned, this lymphoma was created by exposure to the Epstein Barr virus when Dew's immune system was suppressed to avoid rejection of the new lungs. Apparently she had about a 30-40 percent chance of getting this cancer post transplant because she did not have exposure or antibodies to Epstein Barr prior to transplant (and the donor had a 95% chance of having Epstein Barr given that is the exposure level in the adult population). The E-B virus triggers the cancer in situations where the immune system is not able to control the virus upon exposure. We were told pre-transplant that she would have a slightly elevated risk of this "very rare" cancer, but had no idea that the risk was as great as it was.
Toronto General Hospital did not arrange the appointment with the oncologist until almost 2 months had passed after the first huge tumour arose. We understood that the treatment that TGH was giving Dew for the lymphoma was reducing the anti-rejection medicine and, a couple of weeks ago, doubling the anti-viral medication.
The oncologist we saw on Monday seemed to be well informed of the existing medical evidence about lymphomas. He said that as far as he was concerned, the antiviral medication is useless against this cancer. He said that PERHAPS (indicating he was not very convinced of this) it has some prophylactic properties in preventing lymphoma (which clearly did not work in Dew's case if it does have such properties), but there is absolutely no evidence to suggest that once the Epstein Barr virus has triggered the lymphoma, that the presence or absence of further viral load has any impact on the progress of the cancer. He would prefer she get off the anti-viral unless TGH needs it against another virus to reduce the number of dangerous medications she is already on, especially given that more are being added (Dew is taking about 15-20 toxic medications a day at this point already and now chemo is being thrown into the mix.
He said that if Dew was not immune-compromised she would have about a 2/3 chance of surviving 2-3 years assuming she responds to treatment. However, he said that immune compromised patients do not have as high a chance at remission. But since there are so few of them he can not provide statistics. He said only about 100 people from TGH have got lymphoma post transplant and there are many forms of lymphoma, so it is not possible to give a statistical prognosis for transplant patients in the first place, or lung transplant patients with her particular type of lymphoma. He said if it were possible, he would get her off all anti-rejection medications and he does that with people with kidney or liver transplants, but TGH would not allow that for lung transplants. He said he does not understand the reasons for the difference between the different organs transplanted.
However, from what I have gathered, it is because lungs are immunologically active, constantly interacting with the air from outside the body and because lung transplant is in its infancy and they do not yet know how to match donor organs with recipients yet, other than by blood type and size, unlike kidneys (a much more successful operation in general) for which there are many known markers which are matched prior to someone getting the transplant. Also kidneys have a small surface area and do not interact with the environment outside the body. He also said he had only just learned that the life expectancy of a lung transplant recipient is only 5-7 years.
He wanted to start treatment immediately, but the first available slot was next Tuesday. He said the first treatment lasts about 4-5 hours, but the schedulers insisted on 6 hours to observe the side effects. The doctor said that the most likely side effect is shortness of breath. He is particularly concerned because Dew's pulmonary volumes are so low already, even in comparison with the average lung transplant recipient and as the tumours have grown. This treatment is a chemotherapy which is a targeted antibody treatment against B cells whether cancerous or not. Cells are immune cells in the bloodstream which create antibodies, thus not having them makes the person highly susceptible to infections getting completely out of control. The B cells can not penetrate cells - that is the job of the T cells. Both B and T cells are parts of the immune system that create organ rejection. The T cells kill cells that are infected with viruses, bacteria, fungi, or which are cancerous, but they receive signals from the B cells in order to do so.
Because this chemo treatment is specifically targeting B cells to kill them, it does not have as bad side effects as standard chemotherapy. So although the most obvious side effect is likely to be shortness of breath (which can be somewhat compensated for with oxygen), the really serious issue is that it leaves Dew without the B cells to fight anything at all.
But standard chemotherapy still has to be used in Dew's case too. After 4 weeks of incrementally smaller doses of this antibody against the B cells, the hope is that this drug will shrink the tumours. But since she can not remain indefinitely on this antibody against her B cells as that would leave her open to all infection, they only use it for 4 weeks. Once it is stopped, the tumours start to grow back. So they use this antibody for 4 weeks to shrink the tumours as much as possible over that period, then they give standard chemotherapy with all its toxic side effects and hope she survives the treatment and that the tumours do not. If it works, and she does not fall ill with an infection during the treatment, the studies indicate she could remain in remission for 2-3 years (possibly more, but the studies are not long term). In addition to the tumours, Dew's pulmonary volume has fallen since that peak on Valentine's Day when she reached for a day or so, the same level she had had pre-transplant. Now it is lower again presumably due to the tumours taking up a lot of room in her lungs. However, her home pulmonary nightly test indicates a slight increase again this week, which might be an indication that the largest tumour is indeed shrinking a little bit.
She is still struggling with a lot of pain for which she is afraid to use the painkillers. Yet another doctor told her she should be using the narcotic pain killers when she needs them (and an earlier doctor said she would just need to get used to being in a lot of pain for the rest of her life). I spoke some time ago with a pharmacist at Shopper's Drug Mart who was going to find out what kind of starch they use in their generic brand imitating Tylenol, but she never got back to us and I have not had time to go find her again so we still have to assume that the food starch they use is either corn or glutenous. I had raised the issue a couple of months ago of liver toxicity from using acetaminophen (tylenol type drugs) which I have known about since about 2005 or 2006 (especially since Dew is already on so many drugs toxic to the liver), and the nurse practitioner had poo-pooed my concerns. However, on Monday the hospital newspaper had its cover story about liver toxicity from Tylenol and opened the question of why the FDA has limited the dose to 325 mg due to these concerns as of January 2014, but Health Canada has not.
So it appears that this is just another case of the medical practitioners being oblivious to the medical research indicating problems with various drugs and just responding to rote protocols, and then it is taking years for the regulatory agencies to react and change the protocols (from 2006 to 2014 is 8 years, and I doubt I was the very first person to know about it!). Health Canada is not just behind by a couple of months, but both the FDA and HC are behind the 8 ball by many years, and the medical establishment continues to consider such drugs as ones to be dispensed like candy, even though people have died from a very limited exposure to them - a couple of days of very slight overdoses. The situation in people who are already taking a lot of liver toxic drugs should be one of greater caution rather than less, but since Tylenol is not addictive and hydromorphine is, medical protocols just assume that Tylenol is safe rather than that both are dangerous in different ways.
So Dew still has no other alternative for pain medication due to not getting an answer about whether there is corn in the Shopper's Drug Mart acetaminophen as well as in all the other brands, and they don't make this narcotic she is allowed to take in a smaller long-acting dose than she already has. So she has often been just not taking the pain meds when she needs them. Her sternum is still broken which continues to be very painful. I suspect that the reason for that is that it is partially dislocated (because for the first many weeks it was not at all painful and only became painful after she had some severe coughing fits on one particular day. One person who examined her soon afterwards said there seems to be a ridge between the two sides, indicating that the bone is no longer in its proper place, but the hospital protocol for such possible dislocations is to ignore them.
She is also in a lot of pain several times a day for hours sometimes from her digestive tract and we do not know what is causing that. She sometimes cries out or starts crying from that pain, but other times in the day, it almost goes away. They initially thought it might be from the lymphoma in her digestive tract but the one CT scan early on did not pick it up so they are assuming it is not in her digestive tract. If it is, they think that the treatment she is getting will be systemic in any case, so they are not that interested in finding out what is causing Dew so much pain.
She also has a lot of pain on the tops of her feet which has been there since immediately post transplant. One foot improved about 30% very suddenly one day a couple of months ago, and she says that the other one seems to have also improved very very slowly over months to about the same level as the first one. But that still leaves her with about 70% of the pain on the tops of her feet and ankles that is completely unrelieved by pain killers. They said she would need another kind of pain killer to do anything about this neuropathy, and if she took that particular pain killer she would be stuck on it for the rest of her life. A couple of doctors have said that they would hesitate to give it to her, and they have not hesitated about any other terrible drugs with horrible side effects, which really gives us pause! So Dew has not asked further about the possibility of relieving that pain! They said the neuropathy is a side effect of the drugs she is on, because they apparently kill the nerves. They were mildly surprised that it is only her feet and not her hands also being affected.
In any case, she is in so much pain since transplant that I dare not touch or hug her. Every time I try, I set off more pain.
The good side of things is that temporarily her nausea is less - because of the reduction in her anti-rejection medicines. Because they are so toxic, they make Dew very nauseated much of the time. The nausea is not gone at the moment but it is less on the smaller dose. However, since they just eliminated the antifungal medication she was on, they increased one of her anti-rejection medications that had been reduced previously to help fight the lymphoma. This is because there is an interaction between the antifungal and the anti-rejection medicine which increases the effectiveness of the anti-rejection medicine when taking the anti-fungal.
In any case, the reduction in nausea is likely only to last a month since the real chemotherapy coming up is likely to make it even worse again. Dew asked whether she could now get the effective anti-nausea drug as she has cancer and the answer was, "No" because she has not started chemotherapy or radiation yet.
Dew's spirits are so much higher now that she is not as badly nauseated at the moment. Feeling so very sick all the time was really pulling her down. She is also better able to do her exercise now that she is not feeling quite so sick all the time, and has got back into it the past couple of weeks.
She still remains very exhausted and, when she is not at the hospital, she is often sleeping unless she has visitors. She was saying that she wishes she could do something other than go to the hospital or be shut up in one room all the time when she is not at the hospital. But when I ask her if she wants to go out and do something (I could push her in a wheel chair at say an art gallery or aquarium) she is just too exhausted to try. Occasionally she will get a burst of energy for an hour or two one evening, but since the cancer arose, that little ray of energy that seemed to be emerging has gone back underground. So we can't plan to do anything in the hopes that she might have the energy to try. Dew had sent a $1 contribution a couple of years ago to help cloud fund a return of Veronica Mars, but to film instead of TV. Dew didn't expect to be alive to see the movie by the time it was made. She found out it was released just recently, and wanted very much to go and see it in a theatre, which is risky due to exposure to germs while she is so immunocompromised, but which could be arranged. But when it was on in the theatres she was just too tired to go either to the matinee or the early evening showings. So she saw it in bed instead. At least she got to see it.
When we went to Princess Margaret on Monday, it is located exactly across the street from Toronto General so I wheeled her across the street as her previous blood letting at TGH had taken over an hour and we were in too much of a hurry to make the appointment to let her walk at a speed she can handle with her walker. The gift shop at Princess Margaret is as boring and expensive as TGH, but Dew was thrilled to be somewhere different and got an incredibly tiny package of ginger candy for an outrageous cost of over $2 (as she said, it would be a reasonable price for a normal sized package!). But she is really tired of not going anywhere and not living, just surviving, so even another hospital is a change of pace and breaks the monotony a little. After the appointments on Monday with cancer and transplant doctors, I came back yesterday and am at home for my appointments here. I saw the Kidney specialist at the end of March in Toronto and he said I am in Stage 3 to 4 Kidney failure which freaked Dew out, but is just a statement of what we already knew. He has ordered more tests which will not get done until nearly July it appears. Meanwhile my own doctor, over the past year and a half on those rare occasions when I have been able to take time away from Dew to see her or do tests, has been doing her own sleuthing up unusual paths that the kidney specialist would not think of pursuing. We will see if a) the evidence we now have supports the evolving but strongly plausible theory of where this kidney failure may have arisen from, and b) if that rather esoteric cause is actually the cause, if there is anything that can be done to treat it since so little is known about that area in the first place. As my general health issues have deteriorated so rapidly from being forced to live in the bad environments of southern Ontario, and so much faster than I expected my health to deteriorate in this environment (as Dew's background health has as well), that has really sapped my energy for dealing with what seemed the lesser issue of kidney failure, but my general deterioration may well be contributing to the rate at which my kidneys are failing. I am also trying a therapy that raised my eGFR (estimated glomerular filtration rate) once in the past and I am hoping it will do so again.
Thank-you to all of you for your wonderful support and kind wishes. I still intend to get out personal thank-you notes, but have not been able to manage it. This latest problem which again prolongs our being forced internal refugees in Ontario for health care for Dew has created its own ugly set of bureaucratic nightmares. The poor lady who took my blood today just asked why I had not "corrected" my address for my health card and I asked her how I could "correct" it when my temporary address has sometimes changed daily, other times weekly but in any is constantly changing. I said it should be our permanent address, but since they mailed it out, it has to go to whatever the temporary address currently is. Anyway, I didn't actually bite her head off since she was just trying to be helpful and it was not going to create another bureaucratic nightmare for me to have to battle for weeks and months. But it is these kinds of ridiculous things that create the bureaucratic nightmares we are suffering from, that I have to sort out. Nothing makes any sense in this situation so we don't fit into any of their bureaucratic boxes, although the faulty provincial health policy and its attendant bureaucracy is what is creating the problems in the first place. But they don't make the connection between the system they set up and the problems that it creates and then they say that you don't fit into their boxes. That always means weeks and months of my efforts to try to get things fixed, and many times they just get away with murder because my energies are too sapped and their policies so inflexible. It is hard enough to do this in the first place without the bureaucracy being in place to make it 10 times worse than it needs to be.
Diagnosis: B Cell Lymphoma
DAY ONE - CANCER TREATMENT - April 7, 2014 - I saw the hemotologist/oncologist today. The good news is that my lymphoma is a polymorphic B-cell type, and that the largest of the tumours in my lungs seems to have shrunk slightly since last week. Yay!!!
The bad news is that the prognosis for lung transplant patients with PTLD (Post Transplant Lympathic Disorder) is not as good as for those with other organ transplants (other kinds of transplant patients go off their anti-rejection meds entirely).
Also I will likely start on antibody drug regime soon, as of now, scheduled for my first (of four) treatments next week and when the four weeks is up then I will also likely do chemo - as remission caused by the antibody treatment apparently doesn't last in conjunction. However - I'm hoping that will change as I seem to be responding to the reduction in my anti-rejection meds.
Bronch Went Well
DAY FIFTY-SEVEN - POST REHAB - April 3, 2014 - I haven't checked my sats today but yesterday after the bronch they were fine, so I am really hoping (and it is looking likely) that I won't need O2 during the day.
The fellow (doctor) who performed the bronch did a much better job than the last one, I don't have any throat pain this morning and I'm coughing up much less blood than last time.
I had just a very small amount of sedative, the same as last time, but it affected me much more strongly this time - not so much during the procedure but afterwards. I was really out of it, I was stumbling even with the walker and had to get a porter to wheel me down to the front entrance and took until late evening to wear off.
They didn't give me any results, and I think they took the samples from the 'bad lung' the right side that has the paralyzed diaphragm and more growths. I have some increase sternal pain but it went well.
DAY FIFTY-FIVE - POST REHAB - April 1, 2014 - Bronchoscopy tomorrow - here's hoping I won't be back on O2 24/7 again afterwards (like the last two times). Here's also hoping that there is no rejection with the reduced anti-rejection meds. I'm keeping positive that I'll be ready for the treadmill room by Friday!
DAY FORTY-NINE - POST REHAB - March 26, 2014 - So I did finally get the official diagnosis of PTLD - the biopsy still hasn't come back with the final answer if it is B-cell or T-cell lymphoma but they have adjusted my meds once again. They've reduced my tacrolimus and increased my prednisone and doubled the anti-viral I was on (the prophylactic dose wasn't enough to prevent it but the doubled dose may help to combat the epstein barr that causes the lymphoma).
Still No Definitive Diagnosis
DAY FORTY-SEVEN - POST REHAB - March 24, 2014 - Leslirae: 10 days later and still don't have the biopsy results for Dew. Maybe tomorrow (which is what we've been saying for the past 10 days!) The mass on the CT scan sprang up from nothing to a big mass in less than 2 weeks and grew further in the next week. The doctor said that the reason there is necrotic tissue inside the mass is that it grew so fast, it outgrew its blood supply and the tissue inside died. After the biopsies, there was thick black liquid oozing out of one of the needle pick marks. the rate of growth slowed somewhat in the next week, perhaps because of the reduction in one of the anti-rejection medicines by then. Dew is still on 2 other anti-rejection medications. The told her to slightly reduce one of these and the other remains at full dose. The intent is to reduce the suppression of the immune system (which is what created the cancer in the presence of the Epstein Barr virus from the donor to which Dew did not have antibodies). They are hoping that by letting Dew have a partial immune system, she may be able to fight off the cancer and the Epstein-Barr virus. The risk is that reducing the anti-rejection meds could cause rejection to set in, before Dew's partially compromised immune system is able to kill the cancer. So this treatment option, although the best thing to try first results in walking the line between the devil and the deep blue sea. Because the cancer is so aggressive and fast growing, they can not leave her immune system to try to kill the cancer on its own for very long. But if reducing the suppression of the immune system could kill the cancer, that would be the very best outcome. Chemo will further destroy what is left of her immune system and therefore remove any part her own body can play in killing the cancer. However, if her immune system can not kill the cancer quickly, the next stage of treatment is chemo. I think if that does not work either, they would go to radiation. I told Dew that if Rocque was around, he would tell her that this is a hell of a way to get her anti-nausea drugs covered.
10 Biopsies iNSTEAD OF 2
DAY FORTY-ONE - POST REHAB - March 16, 2014 - Dew had her needle biopsies on Friday morning. Instead of 2 biopsies they took 10 and were still not sure, on visual inspection, of their diagnosis, so we have to wait for the cultures. They had to change spots because she has necrotic tissue in the lungs in the first site.
We might get some answers on Monday, but it could be Wednesday before we hear. The intern, in response to my question, said that it is also possible that there is a fungal infection as well as the PTLD cancer. Dew said the intern was actually glad that they took biopsies from two different areas since there was a better chance of finding two different problems if that is the situation. Dew has been on antifungals and 2 1/2 weeks ago they told her to finish off the prescription of anti-fungals that she has been taking since the transplant and stop taking it. Then the last clinic on Wednesday, when they saw the blood test results they said to stop immediately as Dew's liver is being damaged by these very strong anti-fungals (Voriconazole). Then a few hours later, when admitted to hospital, they told her to continue to take the Voriconazole in case part of the abnormality on the CT scan turns out to be a fungal infection as well or instead of the PTLD.
Hopefully we will get some results soon.
Toby was a brat this morning. I stupidly threw my phone on the couch so it would be handy when I went online, of course anything that gets thrown he figures must be a toy of his. I gently told him 'no' as he was gnawing on it and took it away from him, and flung an elastic for him to play with (which he loves). I went back to finishing my breakfast (I had already fed him a treat of turkey sausage that I can't eat but he loves) and found him chewing on my phone again. So I took it with me this time; once again sternly telling him 'no.' So in retaliation he meowed back, and grabbed a fruit juice bar out of the bowl on the coffee table and threw it on the ground. Are your cats toddlers too?
DAY THIRTY-NINE - POST REHAB - March 14, 2014 - The needle biopsy did not go as planned - they needed to take from two different growths and 10 samples not one or two. They are releasing me and may have info by Monday for me. I am suppose to be on high alert to look for symptoms of lung collapse - I'm not supposed cough much, to lift anything, or go to the treadmill room for 3-4 days but to keep walking when I'm up to it.
DAY THIRTY-EIGHT - POST REHAB - March 13, 2014 - They managed to get me a needle biopsy for tomorrow - so barring complications from that procedure I should be allowed out of hospital by tomorrow evening. There will be preliminary results tomorrow as a doctor will visually inspect the sample and can often tell if it is the PTLD. Treatment should be able to be done as an outpatient, and the resident seems to think the prognosis is very good should it be PTLD - that many respond well to just going off the Cellcept (MMF). So I hope it is turns out to be simple and easily treated - but like before I just have to take things day by day.
Dew had a CT scan a week and a half ago, but only today when we were at a routine transplant clinic appointment mainly about whether she could go back to doing physio at the hospital, they told us the CT scan was highly abnormal. They think she has lymphoma, an aggressive blood cancer as a result of the transplant. Technically, it is called post-transplant lymphoproliferative disorder. They have admitted her to hospital tonight for a couple of days for tests to determine exactly what she does have, and if indeed it is lymphoma. So it appears that the nausea, gastro problems and fatigue, fevers and chills, and over the past 4 days, the marked declines in her FEV 1 (pulmonary test that she does at home) are the result of the cancer, not the stomach flu.
She was at particular risk since she tested negative to Epstein-Barr virus. Her donor was likely positive (ie had EBV) since about 95% of adults are positive. Most people manage this virus very well since they have intact iimmune systems.
EBV is normally kept under control by your immune system, although it does cause a variety of cancers in some people over the longrun. But without an immune system, there is little to stop EBV from causing cancer if one does not already have antibodies to keep it in check. The hospital had remarked that the fact that Dew was negative for EBV might be a problem post-transplant, but did not elaborate. One nurse jokingly suggested Dew go around kissing strange men pre-transplant to try to get EBV pre-transplant, but Dew did not follow this advice. The nurse was joking, as when kids get EBV it is usually a mild childhood illness, but when young adults get it, it become mononucleosis in about half of cases. Mono would NOT have been a good thing for Dew to get when she was so ill pre-transplant.
The Canadian Cancer Society says that:
"The most common cancers in people who receive organ transplants are skin cancer and post-transplant lymphoproliferative disorder (PTLD). PTLD behaves like an aggressive lymphoma. Lymphoproliferative disorders are among the most serious complications of long-term immunosuppression for people who have organ transplants. With lymphoproliferative disorders, lymphocytes (a type of white blood cell) are over-produced or act abnormally.
"PTLD occurs in about 1â€“2% of people who receive organ transplants. PTLD can also occur after allogeneic stem cell transplant, especially if people received stem cells with many of the T-cells removed (T-cell depleted).
"PTLD is almost always related to a virus that has been linked to lymphoma, the Epstein-Barr virus (EBV). However, people who are EBV negative can also develop PTLD. The majority of PTLDs are B-cell lymphomas. About 12â€“14% of PTLDs are T-cell lymphomas. People with PTLD present with enlarged lymph nodes (lymphadenopathy) or a malignant mass. The cancer has often spread to organs or tissues outside of the lymph nodes (extranodal involvement). Common extranodal sites include the lung and gastrointestinal tract. PTLD also spreads to the central nervous system (CNS) in some cases.
"Most cases of PTLD occur within the first year of organ transplant. EBV-negative PTLD often occurs later (about 5 years after a transplant). EBV-negative PTLD is associated with a poorer prognosis.
"Other factors associated with a poorer prognosis at the time PTLD is diagnosed include:
- spread to the CNS
- spread to the bone marrow
- abnormally low levels of the protein albumin in the blood (hypoalbuminemia)
"The majority of PTLDs are B-cell lymphomas. About 12â€“14% of PTLDs are T-cell lymphomas.
"People with PTLD present with enlarged lymph nodes (lymphadenopathy) or a malignant mass. The cancer has often spread to organs or tissues outside of the lymph nodes (extranodal involvement). Common extranodal sites include the lung and gastrointestinal tract. PTLD also spreads to the central nervous system (CNS) in some cases.
"Most cases of PTLD occur within the first year of organ transplant. EBV-negative PTLD often occurs later (about 5 years after a transplant). EBV-negative PTLD is associated with a poorer prognosis.
"Other factors associated with a poorer prognosis at the time PTLD is diagnosed include:
- spread to the CNS
- spread to the bone marrow
- abnormally low levels of the protein albumin in the blood (hypoalbuminemia)."
The intern explained that Dew likely has lymphoma (although the CT scan does not present a textbook classic case of it, it is her most likely diagnosis at present due to the other gastro symptoms, nausea, fever, chills, fatigues, etc.) The intern said that since the cancer is due to immunosuppression, the would try reducing the anti-rejection medication, although this is very risky as she may end up in rejection of her new lungs. If reducing her anti-rejection drugs does not work quickly or results in rejection, they will try chemotherapy.
Dew's official doctor here at TGH has only seen Dew twice since Feb of 2013 - more than a year ago. However, she came in today and said that they were admitting Dew for tests.
She also asked about Dew's pain medications. FOr the past 3 weeks the person at weekly clinic has been severely admonishing Dew for still taking pain medications and warned her that she would just have to live with pain for the rest of her life because if she did not stop now, she would be addicted. When I pointed out that Dew still needs them (to the point that when she does not take them she is in so much pain that she wishes she had just died and not done the transplant) this person said I was "enabling". I had pointed out that I was hardly someone to be accused of "enabling" since I have not taken a single painkiller for decades and Dew has not taken pain killers until 2009 when she was in agony from arthritis. Even when Dew was 5 or 6 and broke her arm I did not give her pain killers, so we are not people who take them lightly. However, there is a time and place for everything, and for Dew, it is now.
Dew's doctor was not aware of these previous conversations, but when she heard what dose Dew was on and that she was resisting taking it, she said she should be taking it when she needs it. When she heard that the other health professional was saying Dew would become addicted she pooh-poohed it saying that since Dew was on a low dose and was aware of the risks, and only taking it when needed, there was little chance of addiction. Also, fortunately, another option had just opened up about a half an hour before. Although the transplant team allows people to also take Tylenol, the name brand and generic forms have corn, so Dew can not have it. Before the intern arrived, the pharmacist came into Dew's room at clinic and said she wants me to check out the acetaminophen at Shopper's Drug Mart (life brand) and see if it has corn because she thinks from her recent research that maybe it does not. That would give Dew an additional and somewhat safer form of pain relief.
Also last week in Transplant CLinic they told Dew to finish off her bottle of antifungal Voriconazole medications since she has taken it 3 months now. Today, they said, "don't finish the anti-fungals - stop immediately as your liver is being damaged". Tonight they said in hospital, keep taking them a few more days at least until we are sure that it is lymphoma and not a fungal infection of the lungs.
So for now, we are awaiting the results of tests tomorrow and maybe for a couple of days. First they will do a full body CT scan to check for other locations of the lymphoma, including the gastro tract. Then likely a needle biopsy into the mass in her lungs. When they can schedule it, they will do the bronchoscopy and do a physical biopsy of the white mass on the CT scan in the right lung.
We know "the drill" now. We took a day's worth of Dew's medicines to hospital on the very off-chance that they would admit her. Since of course, they did not have some of the drugs she needs, it was a good thing we have the corn-free, gluten-free and lactose-free versions. Of course there was no food for Dew in the hospital tonight and since she was too nauseated this morning before we left for the hospital to eat, by 6:30 pm she had a window of opportunity to eat when she was ravenously hungry and not nauseated and needed to eat something as it was the first time for food today. The lady sharing her room is very nice. She kindly offered Dew her salad from dinner while I went back to get dinner for Dew and got back with it to hospital about 7:30. Tomorrow, I have to also bring more food since the hospital will not feed her, and also bring medications she can tolerate so they don't send her into anaphylaxis again. At least this time she can eat.
I was waiting until Dew was stable enough for me to leave her so I could go back to Ottawa for treatments since my health has deteriorated so severely as a result of being in bad environments in southern Ontario. My kidney failure has worsened so severely that I am at risk of having to start dialysis, if the medical tests are to be believed. I should have gone back to Ottawa for a 3 month treatment in January, but have not been able to leave Dew. If she were being looked after in hospital, I could go now, but she is even more vulnerable being in hospital now than she was a few days ago when she was an outpatient and we were only worried about her not recovering from stomach flu due to being immunocompromised.
We are hoping that the true diagnosis is a "better" one, but it sounds like a strong possibility is that she has an aggressive cancer and will have to try to fight it while immunosuppressed - which is a bit like sending a boxer into the ring with his hands tied behind his back and blindfolded. All alternative cancer treatments operate on strengthening the immune system to fight the cancer, which is not an option when you have had a transplant.
So we have to hope that letting up a bit on the anti-rejection medications will be enough to kill the cancer without killing the new lungs.
POST TRANSPLANT LYMPHOMA
DAY THIRTHY-SEVEN - POST REHAB - March 12, 2014 - They admitted me after clinic today - it is looking like I may have post-transplant lymphoma - so am likely going to be here to expedite the tests for the next few days. It likely wasn't the stomach flu after all. If it is PTLD it is because I never had epstein barr and my donor (along with 90% of the population) did.
Trying to Exercise
DAY THIRTY-SIX - POST REHAB - March 11, 2014 - Dew felt up to trying to do her exercise today at hospital for the first time in weeks (after yesterday nearly vomiting again) but the hospital sent her away in case she is (still?) contagious and said to see if the doctors can sort out the problem tomorrow in clinic (after not succeeding the past 3 weeks). She was hoping to use exercise equipment here instead, but by the time we were back she was too exhausted to do more and slept all afternoon.
DAY THIRTY-FOUR - POST REHAB - March 9, 2014 - Dew has been up and down the past couple of days, which is an improvement over just down, so hopefully she is slowing recovering from this stomach bug. Two days ago she felt up to getting up and helped with the cooking for about an hour in the evening before she ran out of steam and had to go and rest again. Then down the next morning, but slightly better for about 2 -3 hours yesterday evening. Then down again, but somewhat better this evening. She is still in a lot of pain, but the stomach pain, cramps and problems are better, so hopefully the trend will be upward again from now.
No Bronch Today
DAY THIRTY - POST REHAB - March 5, 2014 - So the bronch was a no go. I felt sicker in the morning and called the unit and asked them if I should come or not (this was at 8:20ish and we had to be there for 9 - an hour prior to the procedure) and that we were running a little late. Of course I have to leave a message for the coordinator, so we were in the car almost at the hospital when she called back (the cell phone was in the back seat so I only got the message) saying as I wouldn't make it on time anyway she had cancelled the appointment.Â
I showed up at 9:15 - which set off a flurry of phone calls, they had already booked an inpatient in my spot but they weren't sure what to do. So they sent me to get my ph gastro tube removed (took 3 mins) while they waited on people calling back. Finally around 10:00 the doctor came to talk with me; he said they'd given my spot away and it wasn't ideal to do the bronch while I'm still sick (but I suspect they would have done it anyway if my spot wasn't taken).
He ordered some stool samples (I know t.m.i.), and it took forever for it to get relayed to the lab. He also told me to keep my coordinator updated on how I'm doing. He asked if I was still eating and drinking (and I am/was when not ordered to fast as have been for the procedures/tests these past 3 days). I suspect he would have admitted me again if the answer was no. He also thinks it maybe the MMF (CellCept) anti-rejection drug that is causing it - so we halved the amount at the last clinic and he thought we may try to go off it for a week if I'm still sick next week. We got back to the hotel around 11:40 and slept until 2:30.>He ordered some stool samples (I know t.m.i.), and it took forever for it to get relayed to the lab. He also told me to keep my coordinator updated on how I'm doing.Â
He asked if I was still eating and drinking (and I am/was when not ordered to fast as have been for the procedures/tests these past 3 days). I suspect he would have admitted me again if the answer was no. He also thinks it maybe the MMF (CellCept) anti-rejection drug that is causing it - so we halved the amount at the last clinic and he thought we may try to go off it for a week if I'm still sick next week. We got back to the hotel around 11:40 and slept until 2:30.
3-Month Clinic Tests
DAY TWENTY-NINE - POST REHAB - March 4, 2014 - Today was a really grueling day for Dew. Since she was discharged from the hospital last Wednesday, she has been spending most of her time sleeping and feeling horribly sick.
Yesterday she "only" had a large battery of blood tests; Chest X-ray; pulmonary function tests; arterial blood drawing (usually pretty traumatic, but this guy knew what he was doing and only needed 2 tries and 3 proddings around inside with the needle looking for the artery before he found it, so there was minimal bruising and little trauma this time) and clinic appointment (and another appointment which she missed due to be too sick to make it). At the clinic they said her samples were negative for bacterial infection and are still assuming this is stomach thing is viral.
Today was more grueling for Dew as it started before 6:30 am and we just returned from the hospital before 6 pm. She managed to lie down in between tests for the 4 1/2 hour gastric emptying test (which is part of the 3 month assessment and unrelated to her current stomach flu). Then she had a nose tube inserted for a 24 hour acid reflux test, then her CT scan (why they need the chest x-ray the day before when she is having a CT scan the next day, I do not understand, but they do not skimp on radiation here). One CT scan machine was broken so there was a very long wait for that test and a lot of being moved hither and fro to find new waiting areas where the technician said she would be right back and then did not come back for about an hour. I would have asked for Dew to be able to lie down somewhere during her 2 hour wait for the CT appointment, but they did not level with us about the timing and her appointment time was overdue so we thought she would be going in shortly. Usually those tests are pretty close to being on time, unlike clinic appointments which can be 2 1/2 or 3 hours late.
Tomorrow she "only" has the bronchoscopy and 6 minute walk (which I don't think she is up to and we can reschedule that for later.
I tried to convince her for the last month to try to reschedule some of these tests to make it less grueling, and she did manage to reschedule one. I would have intervened more forcefully had she not been so sick last week so didn't get time, and did try at the end of the week last week to reschedule some, but only succeeded in rescheduling a second one. I gave her 4 creative alternatives to make this assessment less grueling but, not knowing she would still be so ill this week, she thought she could handle it and, given the way they responded in the past, is too scared to try to reschedule anything. Had to find her a wheel chair this afternoon and push it with her in it, while she held onto her walker moving along beside the wheel chair. Before I found the wheelchair I was pushing her in her walker from about 1:00 pm, but it was exhausting for her to try to hold her feet in the air so they didn't drag, so the wheelchair/walker convey was better. As soon as we got home, we got her to bed and she feel asleep immediately, nose tube or no nose tube, and will probably be out for the night again.
She did manage to eat mid-day and keep it down, but I hope all this does not just set back her recovery from the stomach flu, if that is what it is.
Dew's Mom posting again: Dew started her grueling 3 month assessment tests and clinic appointments yesterday, although she is still very ill. She ended up vomiting while waiting for the clinic appointment.
It turns out that the lady who ran the microspirometry course she had to take at the hospital on Thursday Feb 20 had the same thing and must have given it to Dew. That lady is still quite ill too.
However, at the clinic appointment yesterday, we didn't know that. So in case this illness was caused by her anti-rejection drugs, the hospital decided to play with her anti-rejection drugs and doses. We will see if it helps, but now, knowing what we do now, we are not sure that changing the doses is the right course of action. At the time when they told us that they were going to change the doses both Dew and I said with one voice, "Is that safe?" However, the hospital thought it was safe to experiment with the doses and see if her vomiting and illness improves, and she will have another clinic appointment next week to reassess. However, I don't think the lady teaching the course is on anti-rejection meds, so I don't expect that playing with the doses is going to make a difference. Hopefully it will just resolve on its own soon - but we and the hospital have been hoping that for a week now.
The good news is that despite this stomach bug, Dew's pulmonary function tests, which were worse last week, actually showed additional improvement this week, which was unexpected. She still has very poor pulmonary function tests, but any improvement suggests she is not entering rejection.
Her pulmonary function tests now show a total lung volume of 76% of normal (which is consistent with having 1 and one-half functioning lungs) and is considered well below the normal range.
Her FEV1 which is the forced expiratory volume in one second test has gone up to 41% of what someone her age and size should have -- still as low as when she was so very ill pre-transplant, but the best so far with the new lungs. This is still considered well below the normal range too.
The DLCo which measure the ability of the lungs to exchange gases was finally measured yesterday for the first time, and is at 39% of normal - also well below normal range, but up drastically from about 5% which was about the last time it was measured pre-transplant when she was dying.
However, the lady at the clinic yesterday says there is still a good chance of Dew's lung function to improve further - contrary to what we were told a couple of weeks ago at the microspirometry course.
She said even the total lung volume can improve, despite the paralyzed diaphragm because the chest walls can expand.
Dew is still on low amounts of oxygen overnight, but is managing without when upright standing or sitting during the day.
Having more tests this morning and afternoon, then the dreaded bronchoscopy tomorrow (not the proceed itself which is dreaded -- but our experience with its aftermaths - hopefully it won't set her back again this time!)
Dreaded Bronchoscopy on Monday
DAY TWENTY-SIX - POST REHAB - March 1, 2014 - Not feeling great, but eating and keeping things down. Slept quite a bit yesterday, much of it with a furry lead weight on my feet. Toby has gone back to being slightly worried but only slightly. Actually as have I - my PFTs have been down the last couple of days and it went passed the 10% mark yesterday (as compared to Monday).
Clinic on Monday as well a whole bunch of 3 month tests, including the dreaded bronchoscopy. I actually don't mind the procedure itself too much, especially when they let me watch, but I don't want to desaturate more again. I'm still coughing up (old) blood from the last one. I'm hoping to be completely over this virus by next week as it is going to be a tough one. But I've been listening to my audiobook and watching Sherlock so things can't be all that bad. Have a happy weekend all!
Dew Feeling Pressure to be "well by now"
DAY TWENTY-FIVE - POST REHAB - February 28, 2014 - Dew is still feverish, but managing to keep down liquids and pills... but in a lot of pain and very grumpy and weepy. She tried to cut back on her pain pills again and it just makes us all miserable.
When Dew returned from hospital, Toby relaxed completely and was so much happier - no more concerned stares for hours with a worried expression on his face. Just basking around on the bed in perfect happiness.
Today, however, he has made it clear that she should be over it by now. If she coughs, he has gone back to complaining and chastising her for it.
That is part of Dew being so upset. She feels so much pressure - internally and externally in so many ways -- to be "well by now" and just is not there.
Is It Naivete to expect a hospital to follow protocols?
DAY TWENTY-THREE - POST REHAB - February 26, 2014 - OK, if you are kind you could call me naive. I left the hospital early this afternoon (Tuesday) after the transplant doctors had said that they would give Dew her anti-rejection meds immediately - by intravenous and one which is not available intravenously, sublingually - which is well absorbed and quickly. I reminded the nurses before I left Dew's room that she was still very late for her anti-rejection meds, but they said that they needed to give her the effective anti-nausea drug intravenously first and would give her the anti-rejection drugs right after that. So I foolishly believed them.
But I am not naive. I know too much about medical care, or the lack thereof, to ever be naive. I know that health care is virtually non-existent and medical care is not generally evidence-based and even when it is, it is often misapplied. I know that every hospital makes thousands of mistakes daily and all hospitals kill many people each month. I know that other health practitioners cover up the mistakes of their colleagues. I've SEEN the statistics and read the medical journals that report that 50% of all illness is iatragenic (meaning created by medical practitioners either through mistakes or just through their normal approaches which are often highly dangerous).
So I guess I am just plain stupid. I left Dew this afternoon so I could go off and continue to fight the many bureaucratic nightmare wars we are dealing with since we are forced to live in Southern Ontario, and was going to go back and be with her in the evening, which I did. If I could clone myself, then I could stay with her 24 hours a day, which is what every patient in a hospital needs to stay alive, but which is not practical for most families.
When I arrived about 7:30 pm I found Dew in the little isolation room in Emergency with droplet gown / mask protocols in place. Although she had supposedly been admitted, she was still in Emergency for lack of ward rooms. I asked Dew what time she had finally got her morning anti-rejection medications. (The other meds are less critical, but the anti-rejection HAS to be taken with a very narrow margin of error.) Dew gets upset if she is early or late by 15 minutes taking those drugs, and she is being over-conscientious and I've told her so - 15 minutes early or late is not the end of the world! But this is ONE thing that ALL her doctors and nurses have been both unanimous on, and more than clear about: the anti-rejection drugs must be taken exactly 12 hours apart and her blood is tested at precise times weekly to ensure that the levels of anti-rejection drugs are within the narrow window that they must remain on a daily basis - which also requires precise timing of the blood work during the day it is taken to check where her levels are at.
In answer to my question about when she got her morning anti-rejection meds, Dew said she still had not gotten them. This was at 7:30 PM in the EVENING! I thought she just must have slept through them. I asked if a staff member had given Dew her afternoon and evening drugs and she said that she had not had them either. I asked why she had not reminded anyone that she needed the anti-rejection meds. Dew said that she had raised it with everyone who came in the room, but they had mainly left her alone all day and she had been asleep most of the time (and she is still VERY feverish). She was too ill to leave her bed and was tethered to the wall by a 6 foot oxygen tube anyway so could not charge down to the nursing station to ask where her medications were.
So I charged down to the nursing station and politely asked them who was in charge of my daughter's care. The nurses there were not sure who was. So I told them that she was supposed to have had her anti-rejection meds at 10 AM just after I brought her to emergency. I told them that the SOLE reason I brought her to Emergency was because she was vomiting these meds and we had to be sure she was absorbing them or she could go into rejection. THE MAIN reason her transplant coordinator had been pushing us to go to Emergency was to ensure she was getting her anti-rejection meds on time and was absorbing them fully. I think Dew's coordinator also might also have had a secondary agenda of having Dew more closely monitored by the hospital staff than can be done at home given how ill she is, but the MAIN reason was for the anti-rejection meds.
The nurses agreed that she should have had the anti-rejection meds and would look into it right away. So I went back to Dew's room, changed her sheets which she had soaked through with sweat, and eventually Dew's nurse showed up. She was a very sweet girl who had just come on duty a few minutes earlier and had no idea what had happened during the day shift, but she would go and get the anti-rejection medications. She did venture to say that "it often takes a couple of days in Emergency before we get the medications sorted out and get the drugs from the hospital pharmacy." I did not point out how damning that statement is. 2 days is more than reasonable when someone critically ill and unconscious arrives with no history and no family and when you have to figure out what is wrong. But 2 DAYS?! when the hospital computer has the exact doses needed at the precise times and the patient arrives with a print-out of the exact same thing that is on your hospital computer and when NOT having those medications is life-threatening ?? Really, 2 DAYS!!? How many people die in Emergency in 2 days?
The nurse came back in about 20 minutes with two of Dew's anti-rejection medications and Dew's dose of calcium. Calcium interferes with the absorption of some medications so I suggested we wait on the calcium for at least 2 hours (as is scheduled for with Dew's meds), and she agreed that that was a good idea. Then about 1/2 an hour later she brought in the 3rd intravenous anti-rejection drug and said it would take 2 hours to be delivered through the tubing. Thus Dew got the last of her 10 AM morning anti-rejection medications at 10:30 PM this evening. She could already be in rejection.
I told the nurse that when she got a moment that we would like to review what was on order for Dew's medications for Wednesday morning and to be especially sure that Dew took the three anti-rejection meds that she had had started at 8 PM this evening for 8 AM on Wednesday morning (not her regular time, but at least on the 12 hour schedule!). It would also be nice if she got some of the other essential drugs too, but a few of Dew's medications are not that critical if they are given late. She has one that is due tomorrow morning that she only takes once a week, so if it gets delayed a day or so, it is not of earth-shattering importance. Dew pointed out that the hospital will only have the allergenic version of her thyroid medication that our doctor has warned her not to take, so I will have to bring her own pill in for her as that does need to be taken.
The nurse didn't have time to review the medications for a while so we left the list that the transplant team had given Dew on the chair beside Dew's bed for the nurse to compare with what the doctors have ordered for Dew for the morning. Hopefully the nurse actually will check the list against what has been ordered for the morning, but if she does not, or there are critical meds missing from those given in the morning, I will have Dew's pills with me and give them to her myself. If she vomits them up, at least she will get a partial dose - which is better than no dose at all from the hospital. They have no moral high ground left, if they ever did, to tell me that she can only take what they give her in hospital. If there are any more critical mistakes tomorrow, I will have to convince Dew to come back to our hotel room (our home now while in Toronto) so I can make sure she is actually getting correct medications for the ones that are life-threatening if not taken on time.
Dew has her clinic appointment tomorrow so I will wheelchair her up to the clinic so she does not miss it. I will also leave a message for Dew's transplant coordinator to let her know how her request that I take Dew to emergency "worked out".
effective anti-nausea drugs are only covered for cancer patients
DAY TWENTY-TWO-POST REHAB - February 25, 2014 - Dew's Mom posting again on behalf of Dew:
Dew was just readmitted to hospital this morning. We probably should have taken her in last night at midnight, but having had as much experience as we have had to date with hospitals, we decided to prioritize her health over the "medical condition" and let us both get some sleep first, knowing that she would get worse without sleep and no sleep would happen in the hospital if we went in last night.
Last night her slightly elevated temperature became a real fever, but not too high - just 102. She had not drunk much and had not eaten all day, and when I did finally get her to drink a bit, and then about 1/2 an hour after that take her pills with a bit more liquid, she ended up vomiting up all her anti-rejection medications and all her other pills about 45 minutes later. So that was 2 nights in a row when we were not sure how much anti-rejection meds she had absorbed. She has had diarreah for the past 2 days as well, nausea and cramping, and her anti-nausea drugs are not the effective ones because the effective ones are only covered for cancer patients.
We talked again with the coordinator this morning as we were enroute to the hospital and she said that the emergency room would give the anti-rejection meds and most of her other pills to her intravenously, so she would not just end up vomiting them up again. However, when we arrived about 15 minutes before her morning dose of anti-rejection medications were due, she went through the emergency room process and we, and all the nurses kept echoing how she needed her anti-rejection meds, but she never did get them. (I am hoping she has them by now at 1:30 pm). First they waited for the chest x-ray and blood tests, then they waited for the transplant doctors, then they decided to admit her. The transplant doctor did say that it was not a good idea to have her in hospital in her immune-compromised state, but hoped to discharge her on Thursday if she improves. I hope she has had her anti-rejection medications by now, but I came back here to get something to eat for breakfast / lunch at 1 pm and will go back later to hospital after dealing with urgent things that have to be resolved before 5 pm.
We suspect she has a stomach flu, but she is always nauseated by the drugs now that she does not have an adequate anti-nausea drug, so taking her medicine is really aggravating this stomach flu and risking her going into rejection. In hospital they will give her an effective anti-nausea drug intravenously, and give her the anti-rejection meds intravenously so she will absorb them.
Options for this story
DAY TWENTY-ONE - POST REHAB - February 24, 2014 - Sorry for long delay in posting about Dew. After she started posting again, I was constantly moving between December 29th and the first week of February (7 moves in or out of various places). This week is the first week I have only had taking Dew to the hospital daily and looking after her to do. So now I'm trying to start to deal with all the accumulation of urgent things that have not been dealt with for so long, and finally have a moment to post about my perspective of the current situation.
The good news is that we are all finally together again - Dew, Toby and I - and hopefully we won't have to move for at least another 3 or 4 weeks or more.
More good news - beyond the fact that Dew is alive - is that she is slowly increasing her physical strength to stand up from sitting and to walk more, albeit still with a walker. On Thursday, she caught herself from a bad fall in the room we are in but still hurt herself and then nearly fell again getting from the walker into the car. But on Friday afternoon, she got lost in the grocery store and ended up walking about 1.4 km back to where we are staying while I was searching desperately for her and was about to call the police when she turned up back at the hotel, exhausted and very cold, but with lots of extra exercise for the day.
The current synopsis is that Dew now has 1 1/2 functional lungs. She can not use half of one lung due to the paralysis of her right diaphragm and is still on low levels of oxygen at night particularly. It seems now fairly unlikely that the diaphragm will ever recover, as it seems that the nerve to it was severed in the transplant operation. We had been told that the right lung is collapsed at the bottom, but we have been lucky the last two weeks at clinic appointments and had someone who is very forthcoming with information and explanations. She showed us the chest x-rays and the amount of lung that is collapsed, so we could see that the right lung is half the size of the left lung.
Over the last three weeks, TGH staff have been trying to determine why Dew still needs some supplemental oxygen. It appears that there are 3 possible reasons and all 3 may be playing a role. First, she is still experiencing a lot of edema (swelling, which may also be happenng inside the lungs) and the reason for this was explained to us by this one person at the weekly clinic appointment. When the lung transplant is done, the connections to the lymphatic system are severed and it can take a year for them to grow back. Thus the continued swelling of the feet, face and many other places that Dew is experiencing despite the dieuretics. Fluid in the lungs makes breathing difficult and reduces the oxygen saturation levels in her blood.
They increased the dieuretics and that did reduce the swelling and her oxygen use did decrease, so that was at least part of the explanation. Clearly, the bronchoscopy did damage her lungs, as it usually does in her case, but it has been over a month now, so the lungs should have healed. However, she is still occasionally coughing up old blood, so that may be part of why she still needs some oxygen. And of course, having 1/2 a lung not functioning is a major contributing factor.
Unfortunately, in about 10 days, Dew will have to have another bronchoscopy for the 3 month mark, to check again for rejection. So she might have further aggravation of her breathing problems again. However, besides it being a routine thing to check for rejection at the 6 week and 3 month marks, Dew has an antibody to her new lung. As the doctors do not yet understand the role of antibodies in lung transplant rejection, they are not sure if it is a sign of rejection or not. They do understand antibodies much better in Kidney transplants and heart transplants, which is why those forms of transplant are much more successful than lung transplants at the moment.
Dew's routine pulmonary function tests now are done weekly, and are still not back to the level they were in late September 2013, about 5 weeks after we were forced to move to Southern Ontario, and at that time she was already deteriorating markedly from about the week after we arrived since the environment at home which was important to stabilize her, and lack of the kind of stabilizing health care we also had at home were gone. The hospital only tests the FEV1 (forced expiratory volume in one second) and total lung volumes post transplant up to 3 months, and Dew is still below on those tests compared to pre-transplant when she was dying.
We expect that at the 3 month mark, the hospital will redo the DLCo pulmonary function test and we expect the test to show dramatic improvement relative to her pre-transplant lung function test results (as her DLCO prior to transplant fell below 5% of normal and ultimately to virtually 0 when she was put onto ECMO and the respirator) But currently, her dramatically lower need for supplemental oxygen use compared to pre-transplant is still only "anecdotal" evidence of any improvement in her condition. Her FEV 1 remains much below what it was pre-transplant and quite a bit below most of the other transplant patients who had a double lung transplant. They don't expect the FEV 1 to improve much after 2 1/2 months post transplant, but there is still a chance she could improve a bit. Currently, Dew, as all post-transplant lung patients has to check her FEV 1 at home every day as well as her temperature, because if her FEV 1 dips 10% below her baseline, it could be a sign of infection or rejection. Her weekly Pulmonary function test did dip this week relative to last week but only about 9%, and it did dip a bit more in her daily test, but last night came close to last week's test result.
However, last night she was very ill and vomited a lot, and had a slightly elevated temperature today. At first her transplant coordinator told her to come in to clinic today, but then later said to wait until her regular Wednesday appointment. It may be partly because she is not getting the effective anti-nausea drugs because they are only covered for Cancer patients, not for transplant patients, but nonetheless there is still the lung antibody hanging over our heads. If it is contributing to rejection, then they can do the "blood washing" again where her own plasma is removed and replaced with blood transfusions and hope that helps, or they might try increasing anti-rejection drugs again further. Right now she is at the low end of what they think is safe for those - which has been a large part of the reason her kidney function has finally returned to normal. We also finally got a possible tentative diagnosis from a young intern who discussed her case with the multi-transplant team. He thinks she has something called pulmonary aveolar proteinosis - which was hinted at on the autopsy of her dead lungs - and is still not determined definitively as the cause, rather than possibly a result of another illness. However, there are treatments to slow or stop its progression. Unfortunately, it appears that people often don't get this diagnosis until after an autopsy and that diagnosis was never suggested to us until far too late (actually after the transplant - but even before the transplant it would not have been possible to reverse the damage so she still would have needed the transplant. It would only have helped if the diagnosis had been found many years ago).
According to the intern, there are two possible treatments: Intravenous Immunoglobulin (IV Ig) or Granulocyte-macrophage colony-stimulating factor (GM-CSF). To quote from Wikipedia, "GM-CSF is a cytokine that functions as a white blood cell growth factor. GM-CSF stimulates stem cells to produce granulocytes (neutrophils, eosinophils, and basophils) and monocytes. Monocytes exit the circulation and migrate into tissue, whereupon they mature into macrophages and dendritic cells. Thus, it is part of the immune/inflammatory cascade, by which activation of a small number of macrophages can rapidly lead to an increase in their numbers, a process crucial for fighting infection. The active form of the protein is found extracellularly as a homodimer."
I will have to do more research to try to understand why giving GM CSF would help, rather than aggravate an autoimmune condition, as it sounds like giving this factor would create a cytokine storm and would create additional inflammation which would normally worsen the autoimmune condition. The hospital is not considering treating Dew for this illness as they are depending on the anti-rejection medications to deal with any autoimmune diseases in the short run and in the long run they don't really worry about them since lung transplants don't usually last very long. If Dew gets through the 3 month assessment tests without any rejection being detected by the end of the first week of March, then she has about a 60% chance of surviving for 5-7 years.
Right now, she is still coping with a lot of pain and side effects. We are getting very divergent information from the various interns and doctors at the weekly clinics. One lectures her sternly and at length that he wants her to take MORE narcotics to deal with the pain (as she was trying to cut back) since there is a lot of trauma caused by a transplant and she will heal faster if she is not dealing with so much pain. He says it has only been 2 1/2 months and there are still a lot of things that will be causing her major pain at this stage (and ARE!). Another asks if she is STILL using the pain killers, and does not directly comment, but his face suggests that he thinks she should be off them by now. One practitioner says she should cut back slightly on her anti-rejection meds and then the other one says not to, "or you will never stabilize". One lectures her at length that she should have started her microspirometer tests daily at home before now and that she is risking her life by being irresponsible for not doing it already, but the practitioner who was supposed to teach her to use it and had an appointment to do that with her, cancels it and tells her to wait and take a course on it later since it is not that important in the first 3 months. These are not the only things we have been getting contradictory information on, so basically we just have to collect what information we can and then just to wing it according to what seems best to Dew in the moment herself based upon our understanding of what the risks and best approaches are. That has been more difficult to do when the information we are given is so limited, and why we are so grateful that the last 2 weeks we had a clinician who was willing to explain the edema and show us the chest x-rays and how much of her left lung is not functional.
Thank-you so much to everyone for your kind prayers and support. That is such an important factor in Dew's survival. Thank-you all so much.
wALKED 1.4k WITH WALKER
DAY EIGHTEEN - POST REHAB - February 21, 2013 - Rough day but even though I'm exhausted I'm impressed with myself. After already doing my physio and pulmonary function tests my mom and I stopped by a health food store nearish the hotel on the way home. Stupidly due to some miscommunication and misunderstanding we got separated (and she had my cell phone with her) and I ended up walking back to the hotel (and getting lost). Looking up my route I walked about 1.4 k - thank goodness I still had my walker with me.
Family visted today
DAY TWELVE - POST REHAB - February 15, 2014 - My Aunt and Grandparents came to visit today. It was GREAT to see them (even though Alison got roped into spending the entire time fixing my new computer - it looks like AVG free is incompatible with windows 8.1 and was blocking access to my computer).
Unfortunately it wasn't my best health day and I wasn't very energetic, but it was a nice visit nonetheless. We got spices from David Rotor, and the rest of the Australian Rotor contingent, that look super yummy too (thanks!).
WALKING AGAIN WITHOUT OXYGEN
DAY NINE - POST REHAB - February 12, 2014 - It was an exhausting day but good. I got to visit with Marie Claire briefly for breakfast.
Had a chest x-ray (weekly) and my physio, then clinic. I'm over my cold but still not recovered from it. Today I was able to walk without oxygen - I'm hoping I won't need it to sleep either - but I'll be checking.
The doctors and nurse practitioners seem pleased with my progress. They have found that I have an anti-body to my lungs but as it doesn't seem to be affecting me (no fevers/chills, no big drop in lung function which will hopefully be confirmed on Friday with my PFTs) they aren't worried. Should it become an issue, which I'm saying it won't, they would likely do the plasmapherisis (which they did several times right around transplant - maybe once before and a couple times in the days right after).
Ready for a Games Night
DAY FOUR - POST REHAB - February 7, 2014 - Hey healthy Toronto peeps - who is coming to visit me this weekend - for games or food or hanging out? I'm mostly over my cold - no sore throat and I've stopped using tons of tissue. I 'just' have the additional still healing tiredness/weakness from both surgery and cold. Think I will take my pills and head to bed. Good night all!
A Real Bed
DAY THREE - POST REHAB - February 6, 2014 - A picture of Dew Rotor celebrating the fact that she has a real bed finally at the Residence Inn Toronto - her home for the next 3 months - and can be with her Mom and her precious companion, Toby Arthur.
Finally at the Residence Inn
DAY ONE - POST REHAB - February 4, 2014 -I had the respiratory therapist from VitalAire (the O2 company) come and do an assessment today at the residence. Other than that (which involved quite a bit of walking), and trying on real clothes, I didn't do much but help make unpacking suggestions here. All the staff seem pretty nice.
Tomorrow to TGH and I guess back to physio. Pretty sure I do have the cold - so physio will probably turn me away. But with the PFTs, chest x-ray and clinic it will be exhausting.
My mom couldn't find my walker so I've been walking hanging on to people's arms which worked fine today - but we'll have to go through Mona's basement more thoroughly soon. I still don't think I could have gone the whole day with the walker at the hospital but it is a little disappointing to do the wheelchair for the whole day.
Last Day of Rehab
DAY TWENTY-TWO - REHAB - February 3, 2014 - Waiting for my mom to pick me up - l packed up what I could but packing and loading the car is still going to take forever (especially since they lock the doors at 8:30). Think I probably did pick up my mom's virus as my sore throat is still here and my nose is dripping - boo to that but yay to hotel tonight!
Residence Inn Booked
DAY EIGHTEEN - REHAB - January 30, 2014 -So I think my mom has booked the Residence Inn (downtown Marriott). Hopefully everything, including the oxygen delivery will come together. I guess a hotel is still a kind of an institution, but much different way than that what I've been experiencing since October! I'm looking forward to not having a lot of disruptions in the night, although Toby may have other plans. Still no noticeable decline in my O2 demands which sucks but I'm getting mobile again and that is more important.
Release Date: February 3rd!
DAY SEVENTEEN - REHAB - January 29, 2014 - So I talked with the occupational therapist and also (briefly) with one of the doctors and it looks like I'll be released from here the night of the 3rd (as opposed to early morning on the 4th). Some of the goals which I would have liked to have reached here would require a much longer stay (more than they would have me here and more than I would want to be here). I continue to do well with my physio - but will likely still need a walker and maybe oxygen when I leave, and I won't be able to get in and out of a bathtub. I hope everything keeps improving but I'm worried about the O2 and worried I might have caught my mom's virus. Apart from that I really am doing well.
Water Pill Added
DAY FIFTEEN - REHAB - January 27, 2014 - Long day - left at 11:30 got back around 7:00. The doctor wasn't overly concerned about the hypoxia/desaturation. He has ordered some water pills as I'm gaining weight and swelling (he said fluid on the lungs could also contribute to shortness of breath. I was disappointed with my pulmonary function tests as they don't look much different from pre-transplant. However, they didn't do the DLC0 (diffusion capacity) which is where I'm sure there will be a huge difference. There is a possibility that I'll be discharged on the 4th of February, but all is uncertain.
first Outing - Bra Shopping
DAY THIRTEEN - REHAB - January 25, 2014 - Wow, I just had my first outing and it was fantastic (ironic that it had to be on O2). I desperately needed a bra for physio as none of my own fit and are all underwire. We went to Legs Plus and Bra Boutique http://www.braboutique.com and Rhonda was extremely kind and generous with us. We got an affordable bra that she gave us a discount on and some very useful presents.
I would have been impressed with the place even if the staff hadn't been so kind, as they have a huge variety of sizes and huge selection in those sizes. I highly recommend it for anyone who is hard to fit (and everyone else too)!
More O2 Again Last Night
DAY TWELVE - REHAB - January 24, 2014 - Well the short story is that there is no news and I'm off to my clinic appointment on Monday as scheduled. The short version of the longer bit is that I relayed the desaturating to the Easy Call system (my TGH post-transplant coordinator checks these messages) and I received a call back telling me to go to emergency at TGH (Toronto General Hospital).
Then after speaking with me, she said she'd check with the doctor. The doctor told her he wanted to talk with me - and called me back after clinic was done. He thought it would be prudent to get a chest x-ray done in case there was a collapse. Unfortunately, it was 5:00 pm at that point and they don't do x-rays after 5 (or on weekends) so I'd have to go to emergency at Sunnybrooke (much closer).
The doctor called back and said if I felt stable (as my temperature is normal) that I don't have to go to emergency at TGH or Sunnybrooke. Then he told the Rehab Centre to monitor me closely over the weekend, and if I started to feel worse to come to TGH emerg. The doctor here put in an order that if I get worse and they need an ambulance that it will take me to TGH (not Sunnybrooke).
So I'm back on 1 l/m of O2 on exertion (i.e. slow walking). Very frustrating. I am hoping it is the after effects of the bronchoscopy but don't see why it would be getting worse. I already have my clinic appointment with transplant team on Monday so we will see what they have to say.
Well I needed oxygen again last night, but despite being very tired I feel better this morning than I did yesterday. So hopefully I'm recovering from the bronchoscopy. I hope I don't need the O2 again tonight but I think I'll miss the white noise the concentrator makes - it certainly helped with sleep in the 4-person room. Earplugs are just not the same.
DAY ELEVEN - REHAB - January 23, 2014 - Still pretty slow going today. I haven't recovered yet from the bronchoscopy - had to use O2 again last night and my saturation numbers are jumping all over the place today.
I did my full occupational therapy session and all but the stairs for my physio session. I also did a bit of walking. I'm moving very slowly but I did it.
Another Bronchoscopy at TGH
DAY TEN - REHAB - January 22, 2014 - So yesterday I had the bronchoscopy. It was a pretty tiring day as I snuck into occupational therapy early so that I could get some of my physiotherapy session in. The OT assistant wasn't too happy that I came early but when the OT herself came in she was fine with it.
So then I went early to physio and I managed to get 90% of the exercises done in time to rush to leave (at 11:00); we arrived around noon to TGH. They had me change and wait a while, then took a history and then started the freezing process: gargling gross stuff, then nebulizing other stuff, then getting sprayed in the back of the throat. I asked them to take it easy on the sedative/anesthetic and I think they did. They didn't allow me to watch the procedure (as the previous doctor had) so put a towel over my eyes. I didn't get much feedback except that they confirmed that the right side of my diaphragm is mostly paralyzed and unlikely to recover. I was coughing up a lot of blood in the recovery room (but not enough for them to be alarmed).
My O2 saturation has dropped from 96-99 to 91-93. It was at 88 lying down last night so I went back on O2 (just 1 l/m) to sleep. Hopefully tonight I won't need it. I'm pretty exhausted today - was told to rest for 24 hours. It's frustrating that I can't do physio today (but I don't feel up to it anyway); I hope I'm not set back too much. It all seems within normal parameters though - except for the O2 (which apparently happens but is rare). May need to nap this afternoon even though napping tends to make me feel icky afterward. I had a shower though - so that was nice.
Saw Toby Cat
DAY SEVEN - REHAB - January 19, 2014 - Heading out for my weekend OT and Physio appointments. A little tiring back to back but then I'll have the rest of the day to walk around, rest, etc.
Got to see lots of visitors yesterday: unexpected visit from my uncle Garth, my friend Rachel from Ottawa, then my mom - who then left and got my friend Mona and Toby Cat (who granted me a kiss and a headbutt but then wanted to explore the car and try and get outside).
Have a great Sunday all!
Saw Toby Cat
DAY SEVEN - REHAB - January 19, 2014 - Heading out for my weekend OT and Physio appointments. A little tiring back to back but then I'll have the rest of the day to walk around, rest, etc.
Got to see lots of visitors yesterday: unexpected visit from my uncle Garth, my friend Rachel from Ottawa, then my mom - who then left and got my friend Mona and Toby Cat (who granted me a kiss and a headbutt but then wanted to explore the car and try and get outside).
Have a great Sunday all!
DAY FIVE - REHAB - January 17, 2014 - There is a small scab left but the nurse says the hole is healed shut â€” at St. John's Rehab Foundation.
Saw Dew last night for a couple of hours. She looked really well, other than she gained about 4-5 lb overnight of water...you can see her cheeks are puffy but her ankles looked ok. She'll have to watch that.
But she's doing so well, I can't imagine that she'll need 6 weeks of rehab. Yes, she's muscularly weak, but there's lots of "at home" strength training tools...lifting cans of soup, elastic exercise bands on door knobs and walking up and down the lane way and stairs. The sooner they release her, the better! Get her out into some fresh air. Then she can go for the 3 months of rehab back at Toronto General and then get the duck out of Toronto.
She's asking to do more rehab than they are allowing her right now...she needs to trust her body and push it, but I guess they need to evaluate her over several days to understand what her "average" is over several days, so they don't want her to over do it right away, which would set her back.
Seriously, there are a lot of people living by themselves who are doing much worse than Dew is now. I can't see her being there more than 2 1/2- 3 weeks. She's coming along so fast. She won't be doing 50 sit ups or 50 push ups per minute any time soon, but that will come in time...as will the rock climbing again (but perhaps the sit ups and push ups need to come first???).
(Aunt) Allison Empey
OT & Physio Today
DAY FOUR - REHAB - January 16, 2014 - So today went okay, thankfully only mild nausea (and they have decided to get some of the anti-nausea drug I tolerate in).
I have two therapy sessions a day. The first is with occupational therapy, at 11 am. There we work on my upper body - a tiny bit of arm peddling, some bicep curls (4 lbs currently - I made them up it from 2) and some arm stretch climbing. So far it is way too short a session and too easy (despite the chest pain).
The second session is physiotherapy and it takes place at 1:30. We do some walking, leg exercises, squats (the 1/16th version if that), and a bit of sit to stand. Physio is much more tiring, but given that I did some more of the exercises for the study I think I'd like to increase the amount that we do. Ideally I'd have a third session (a second with physio), but they don't have time for that.
I was able to do more walking with my mom today (using the walker), so that is like getting another mini session in. Hopefully I'll be cleared to walk on my own (with the walker) soon.
No Chair Bike
DAY THREE - REHAB - January 15, 2014 - I've done this cut and paste for a couple of private messages - am pretty tired right now. So here is a cc of what I wrote to others:
Well, I'm very new at rehab. Even though I arrived on Monday, today was my first real day here. I was very nauseous throughout the morning until early afternoon. They don't have the anti-nausea formulation I tolerate (and may decide not to get it in), so I hope this doesn't repeat.
Then was very busy with physio (will be less in future because I did an assessment for a study). I'm frustrated they won't let me have a chair bike in the room as TGH did.
Then Louise who had been a hospice visitor from Almonte and her friend Roddy came to see me, and after that my mom arrived. Lots of pain around 7 - took a pain killer and it is starting to be a bit more manageable. They just kicked my mom out and I'm waiting for my meds before going to bed.
Move to St. John's Rehab
DAY ONE - REHAB - January 13, 2014 - They are moving me at 2:00 today (after telling me it wouldn't be Monday - lol). A lot to get ready. I have a lot of stuff here - it has accumulated since October (even though I've been trying to send things back with my mom). The Christmas trees are packed away thankfully - I wouldn't have wanted to lose any of the beautiful ornaments Elizabeth [Hare] made.
Good Workout Today
DAY THIRTY-NINE - POST TRANSPLANT - January 12, 2014 - Had an exhausting, but good, workout today: 3-inch stairs, leg weights and walking. Broke out in a sweat and had very tight calves/legs afterward.
Met Post Transplant Coordinator
DAY THIRTY-EIGHT - POST TRANSPLANT - January 11m 2014 - In between bandage changes. â€” at Toronto General Hospital.
It is still not healed up but much better, and although I still don't sound quite like me, I am understandable. I try not to think about everything that has happened. It is still too much to process right now. I am still just taking things a day at a time.
Bandage is back on - I don't know why it has to be so large but apparently the other smaller kinds aren't as good.
I still have pred face but it is MUCH better. I'm hoping the trach heals up completely soon. Then I just have the pic line in my arm which I guess is good as they don't have to keep poking me for blood, but it will be nice to be extra tube/bandage free.
They increased my prograf but decreased my prednisone today. I'm waiting for weekend physio to arrive, hopefully they'll take me to the mini gym and I can work on the 3 inch stairs again.
The liquid swelling on my chest has gone down a bit although it doesn't feel less painful yet - I'm sure it will come.
I got my post transplant coordinator yesterday - the one I had requested, Meny Davis;Â she had been my very first pre-transplant coordinator 7ish years ago when I was first accessed. Her assistant went through the "easy call" system with me. Basically, if I feel sick, I call and leave a message and they'll get back to me (Mon-Fri); they also leave messages for me to adjust dosages of drugs. I am supposed to check-in at least once a day.
No "Female" Beds Available
DAY THIRTY-SEVEN - POST TRANSPLANT - January 10, 2014 - So the hold up on St. John's is there are no 'female' beds available. Everything is curtained off, I'm not sure what the big deal is. We have nurses of both genders. They say it will very likely be next week but not likely Monday.
In other news, the hospital generously offered to send me to the hockey game on Sunday - but as I'm not a fan I thought I'd better let someone who'd appreciate it more go.
They are also letting me decide whether or not to drain the fluid build-up that is painful on my chest - it is tempting but it has been slowly going down on its own. If they extract it the fluid may re-accumulate. If we'd discovered it a week or more ago I'd have had them do it but I think I'll tough it out for another day or so and see if it goes down some more.
St. John's Rehab Confirmed - Awaiting Bed
DAY THIRTY-SIX - POST TRANSPLANT - January 9, 2014 - The doctors told me this morning I have been accepted into St. John's rehab. I still don't know when a bed will become available but at least I do know my destination. It sounds like Monday is the earliest it could happen as they don't do transfers on the weekend, the good part about that is my mom will be back so that should make the packing up/moving process go more smoothly.
Too nauseous for lunch today. I did get to the physio gym today and did 10 sit to stands from about 18/19 inches and practiced on the 3 inch stairs; strangely going up was easier than descending. Only once around the hospital 'block' though. Hopefully when Louise comes later I'll do another with her.
Sleep ... in hospital?
DAY THIRTY-SIX - POST TRANSPLANT - January 9, 2013, 7:00 a.m. - 10 more minutes before I can go back to bed (woke up for bloodwork and bone pill). Sigh. Then they'll come in at 7ish for shift change and then again at 8 for vitals and the breakfast tray; then at 9 for pills. I don't know how anyone gets a decent sleep in hospital.
DAY THIRTY-FOUR - POST TRANSPLANT - January 7, 2013 - Dew using an Incentive Spirometer (not a hookah)Â Â â€” atÂ Toronto General Hospital.
This is Dew's new medical "lung exercising toy" not medical "equipment". She blows in it and tries to keep a ball inside the column at a steady level...this will help re-build her breathing muscles that haven't been used much for the past MANY years.
Regular walker - Yeah! / Pathology Report
DAY THIRTY-ONE - POST TRANSPLANT - January 4, 2014 The pathology report stated that Dew's old lungs "show a highly variable mix of a number of different pathological processes. In order of prominence these consist of nonspecific interstitial fibrosis associated with honey-comb lung remodelling [My note: not the positive sort associated with kitchens and bathrooms] and mucus stasis (lower zonal dominant), widespread areas of alveolar lipoproteinosis (evident in all lobes), acute bronchitis/bronchiolitis with areas of epithelial ulceration, pulmonary hemorrhage (some likely procedure related), airspace mixed inflammatory cell exudation (possibly related to mucus statis and/or alveolar proteinosis), occasional areas of acute interstitial lung injury manifested by acute fibrinous and organizing pneumonia."
The report continues with a chronology of diagnoses. [Interesting to us was that there were some diagnoses to which we were not privy at the time.]
Polymyositis (the initial diagnosis we received about a year and a half after Dew feel ill) but she only had that diagnosis for a couple of months
Sarcoidosis: This was the diagnosis we were told about from mid 2004 until 2013. She was diagnosed with a muscle biopsy -- the first time sarcodosis had been so diagnosed and the Chief of Respirology at the Ottawa Civic hospital at the time wrote a paper on his methodology in doing this procedure.
Fibrosing Non-specific interstitial pneumonia. This diagnosis was not shared with us. It was based on a CT scan in TO when Dew went for her first assessment related to a lung transplant in 2007 at Toronto General hospital. The TO respirologist only told us she had "doubts" about the diagnosis of sarcodosis but the Ottawa Chief of Respirology asked us, "what else could it be?" (other than sarcodosis) and neither mentioned NSIP.
Systemic lupus erythramytosis (Lupus) at the Ottawa hospital in Feb 2013 according to the respirologists there. However, the rheumatologist (whom the respirologists deferred to) believed it was schleroderma on the inside of the body in her lungs instead of the usual skin schleroderma. The pathologist's report does not mention that diagnosis. 5. Usual Interstitial Pneumonia pattern pulmonary fibrosis from the Oct 2013 CT scan in Toronto when Dew was already hospitalized.
The pathology report continues that the pathology seen rules out the possibility of sarcodosis. It states that Dew's pulmonary fibrosis is essentially a Usual Interstitial Pneumonia pattern process consistent with a diagnosis of Idiopathic Pulmonary Fibrosis (IPF). However, it asks what the relationship, if any, lies between the alveolar proteinosis to the IPF. He notes that there is a body of literature regarding an inter-relationship possibly related to granulocte-macrophage-colony stimulating factor (GM-CSF) and macrophage function. There are case reports of Pulmonary Aviolar Proteinosis being mistaken for IPF. The doctor writing the report suggests that it is possible that Dew had sub-clinical PAP prior to 2003 and this evolved into interstitial disease fibrosis.
However, the writer of the report concludes that the question of aetiology remains unresolved "although most cases of alveolar proteinosis are acquired and idiopathic."
So twice in that sentence the author is stating that they don't have a clue what disease Dew has. "the question of aetiology remains unresolved" and "most cases are idiopathis" Idiopathic is defined as "arising spontaneously or from an obscure or unknown cause."
My post didn't get eaten either. I got a new laptop from my grandparents and a wonderfully generous woman named Cynthia (with the legwork done by my Aunt Alison).
The day started out rough with a lot of pain and nausea but got better around 1 pm. I had a wonderful visit with my grandparents and Aunt. Getting nervous about not seeing my mom from the 7th to the 11th, although I managed okayish when she was sick before transplant. I will hopefully be in rehab by then.
Sorry for lack of posting. I've been running around for past few days moving out of the place I was staying at in TO, but having to distribute our stuff as we can't move into somewhere just yet; while also organizing our move out of the place we lived this fall near Guelph to return our heavy things to Clayton, which happens this coming week.
Dew's tracheotomy is healing. She has graduated from the big supportive appartus of a walker to a normal walker and is doing one walk around the unit block of the hospital and also a small block.
She still has difficulty getting out of a chair onto her feet. But now she can do it usually with one person helping and occasionally is managing with tremendous effort of her arms to get up on her own.
She also has a severe rash on both hands which she thinks if from the corn.
Various doctors had promised to give Dew her pathology report on her old lung but we couldn't actually get our hands on it as the nurses wouldn't give it to us because a doctor had to explain it, even though they already had. So today, a kind doctor actually printed it off when Dew asked him to and we have it.
I will report on it in next post as I had written a lengthy post and it disappeared on me and I need to redo it, so will post this one and then write one on the report.
Application for in-patient physio submitted - may take a week
DAY TWENTY-NINE - POST TRANSPLANT - January 2, 2014 - Had a lovely late morning / early afternoon of games with Val and Sean. Woke up nauseous but the meds kicked in quickly. I got my physio walk in. I heard that the application to in-patient physio program just got submitted today and may take a week. I'm hoping to get into St. John's (they specialize with transplant patients) but if a bed becomes available elsewhere they'll send me there.
I am starting to be able to get out of raised chairs on my own most of the time (with supervision), which is a big relief. I am still using a tiny bit of 02 when I lie down - but only for part of the night. Gotta keep at the incentive spirometer. I hope you all are doing well and keeping warm.
"Pretty Good Start to 2014"
DAY TWENTY-EIGHT - POST TRANSPLANT - January 1, 2014 - A bit tired today, but no extra pain meds yet (apart from the slow release that I take twice a day). I did need the .5 l for a couple of hours last night again, but hopefully as I use my incentive spirometer the bottom part of my right lung will expand. I got my physio walk in using a low walker today, and had another chest x-ray. Had a good talk with my grandparents and Marie, and expecting a bunch of lovely visitors later. So a pretty good start to 2014.
Pharmacist to the Rescue!
DAY TWENTY-SEVEN - POST TRANSPLANT -December 31, 2013 - So the less good news was I needed to use .5 l of 02 for a couple hours last night when I was lying down to sleep. So strange as it is the absolute opposite of what used to happen with my old lungs.
The fantastic news is the pharmacist came to the rescue and managed to get my drug covered!!! I also got another shower.
More Issues with Corn-Containing Medications
DAY TWENTY-SIX - POST TRANSPLANT - December 30, 2013 - When I arrived at the hospital, Dew was without supplemental oxygen, not even the nasal canula on low levels! She even walked a very short distance with no extra oxygen today.
Last week, in order to reduce the risk of anaphlyalaxis, Dew proposed to the doctor that they give her only the one medication that they can not get without corn, and remain on other meds which do not have corn, not have them put her back on all the meds with corn. They agreed that that seemed sensible. But now, because one of the anti-rejection meds Dew is on that does not have corn is not covered, she is worried it will delay her from leaving hospital until it is approved as an exemption.
Bad news. The anti-rejection drug cellcept that doesn't have corn in it is not covered by the government plan - they cover the same drug that has corn starch in it. We can apply for an exemption but the doctor isn't confident that they will approve it and it takes several weeks to go through, and I wouldn't be able to leave the hospital without it. They are also contacting the company to see if they will give it to me on compassionate grounds, but there are no guarantees with that nor do we have any idea of how long that will take. Of course, they would like me to try the corn starch based one, but I do not want to increase my load especially as I have had minor rashes since starting the other pill.
TRIAL W/O OXYGEN
DAY TWENTY-SIX - POST TRANSPLANT - December 30, 2013 -Trialling without supplemental 02 today and showing off my spectacular prednisone stache. The moon face is starting to come down a bit too, which is nice.
GOOD NEWS - Moving to rehab soon
DAY TWENTY-FOUR - POST TRANSPLANT - December 28, 2013 - Dew got good news. She will probably get discharged to a physiotherapy program (residential) for about 6 weeks, early in the new year - within about a week. Yesterday we mentioned someone being discharged after only 2 weeks post transplant. On the other hand, another transplant patient is still here after 5 months. Dew will be very happy to get out in another week. Still we will be another 4 -5 months in TO as after the 6 week residential physiotherapy there will still be a 3 month period of needing to come back to the TG hospital nearly every day.
Having difficulty with computer freezing so posting may be sporadic for the next few days until I can figure out what is wrong.
First Meds Class
DAY TWENTY-THREE - POST TRANSPLANT - December 27, 2013, 5:30 p.m. - Today Dew and I had her first meds class on how much and when to take them, and all the horrifying side effects. They cause cancer, diabetes, kidney failure, seizures, high blood pressure, infection susceptibility, lack of sleep, diarrhea, mood changes, osteoporosis, swelling, low blood cell counts, fever, rash, sensitivity to sun, water retention, etc.
We also heard of someone who had his transplant on Dec 14 and was discharged home TODAY! With all the complications related to the doctors here not understanding environmental sensitivities, it is going to be a while for Dew. Still don't know where she will be sent for respiratory rehab physiotherapy, or when. But that is the next step after hospital for her, apparently.
Slowly getting stronger
DAY TWENTY-TWO - POST TRANSPLANT - December 26, 2013 - I think this was the first day that there were no operations, no bronchoscopies, no X-rays, no MRIs, no CT scans, no crises etc! Hooray!
However, Dew was exhausted and wanted to go to bed early. No such luck. Pillls at 8 and then over an hour and a half with all the waiting and settling periods to take pills on the right schedule apart from each other.
She is slowly but surely getting a bit stronger. Only takes one nurse to get her from chair to bed now, instead of the hoist and two nurses. Definitely an easier day!
No Signs of Rejection
DAY TWENTY-TWO - POST TRANSPLANT - December 26, 2013 -I hope everyone had a very Happy Holiday!
I note that the shower got top billing and that getting the tracheotomy out was a footnote!
Still a bit worried about the removal of the trach, as for the past three or four days Dew has had rashes - on her face and then on her legs.
They did an x-ray to see if she had dislodged her breastbone which was cut during surgery since she hadn't felt it at all until about 5 days ago when she had several bad coughing fits and it has been extremely painful since then. However, the doctor could not see anything on the x-ray. They also said that there was nothing to worry about with the corn since she was not exhibiting any allergic reactions. (What are the rashes?)
We still have not seen the pathology report on her old lungs. However, the second doctor also said that there was no evidence of sarcoidosis, which is what we were also told in February this year at the Ottawa hospital, but the pathology report is definitive.
However, aside from there being nothing left of her lung due to pulmonary fibrosis, and liquid in the aveoli, they don't know the cause. Both doctors alluded to some interesting observations of the pathologist (still don't know what they are!), but it appears that there are no conclusions as to cause of the fibrosis. I want to read the report myself but have not yet got a copy. But it appears that there is no understanding of what disease Dew has and what the future prognosis will be if this transplant is successful, beyond the usual 5-7 year life span.
So far it is looking good regarding her 50-50 chance of a successful lung transplant (defined as living for 2 years post transplant). The biopsy with 10 samples cut from her lungs a few days ago came back and suggest that so far there is no evidence of rejection.
Since the biopsy Dew has needed more oxygen and is finding it difficult to breathe lying down. She was almost off the oxygen when they did the biopsy, so it will take a little time to reheal and be able to reduce the oxygen again.
Wishing you all a very Happy New Year!
Merry Christmas and Happy Holidays
DAY TWENTY-ONE - POST TRANSPLANT - December 25, 2013 - Merry Merry Christmas and Happy Holidays to you all. Thank you for all the love and support. I hope you are all happy, healthy and eating lots of yummy things â€” at Toronto General Hospital.
No More Trach / Finally a Shower
DAY TWENTY - POST TRANSPLANT - December 24, 2013 - They unexpectedly sent me to the 7th floor today. It made me a bit anxious as I'm not monitored constantly anymore and my 02 needs are still a bit elevated from the bronchoscopy but it led to the best Christmas present I've ever had - a shower! First since October! :)Â
I forgot to mention that they took the trach out (which helped enabled both the move and the shower).
Diagnosis definitely not Sarcoidosis / Visitors!
DAY NINETEEN - POST TRANSPLANT - December 23, 2013, 6:00 p.m. - Dew had another bronchoscopy today, and was sedated afterwards. But, she is alert and eating now. They took about 10 samples of her new lungs and said she might need more oxygen support and might cough up a bit of blood until the lungs heal from the sampling.
Her right lung is still folded at the bottom and they said that it made sense that it is easier for her to breathe sitting up than lying down as gravity helps open the lung more when she is sitting up.
She is still in a lot of pain today because her coughing destabilized her breastbone which was healing. She didn't walk yet today because of being sedated from the bronchoscopy, but is hoping to have me help her do her "walk around the block" in a little while.
The hospital also said that they had finished testing her diseased lung and whatever disease that caused her pulmonary fibrosis was definitely NOT sarcoidosis (which is also what the Ottawa General Hospital said in February of this year). They also told her a little bit about what it might be, but Dew didn't absorb it, so I will have to talk to the doctors directly, as it may have a bearing on the future course of the disease.
She had 2 friends visit her today, so that was a very nice lift for her spirits and she had a better day today than yesterday.
Lights on at Hospital / Dew Took First "Corn Pill"
DAY EIGHTEEN - POST TRANSPLANT - December 22, 2013 - The area around the hospital has lots of electricity - Christmas lights, street lights and office lights on everywhere. Lots of light pollution, so it is never actually dark in downtown Toronto - except today where a lot of neighbourhoods are without power. Many of the homes of hospital staff are without power. But the hospital and area around it are unaffected. Even if this area was affected, I suspect the hospital has emergency generators for most functions.
Today Dew asked virtually every hospital staff member who came into her room if she was being too whiny. They all laughed and said, "No". For her physiotherapy, she walked less than 1/2 the usual distance with the physiotherapists, but then asked me to try again with her later, as she didn't want to do less than previous days and managed about the same distance again. She had several very bad coughing fits, and although the doctor wanted her to try going without any oxygen today, they had to increase her oxygen substantially to get her oxygen saturation levels up again. Then they put her back on 1/2 litre per minute for most of the day - about the same as yesterday. She had some more severe coughing fits while I was there, and I had to put her oxygen up to 3 litres a minute for maybe 3 minutes, when her oxygen saturation levels dipped into the low 70s, but then we were able to decrease fairly quickly back to a 1/2 litre a minute within 6 or 7 minutes. The nurse then decided to leave her at 1 litre a minute overnight.
Dew was in a lot of pain suddenly from her breastbone, which was deliberately broken as part of the surgery to allow access to transplant the lungs. Previously she had not had any noticeable pain there. She is afraid she dislocated the two pieces of bone from each other with the severity of her coughing. The pain was so bad that she asked for narcotics again tonight. She had not wanted to, but couldn't manage the pain anymore. Then she promptly conked out around 9 pm. I thought, finally she will get a night's sleep for a change. But the nurse came in about 9:10 to give her some medications and she had to sit up for 1/2 hour after taking them because of the tracheotomy. Then there were another set of medicines that had to be taken 1/2 an hour after the first set and then she had to sit up for another 1/2 hour. Then, after that, the dressings on her wounds needed to be changed and that takes a while. So finally about 10:30, when she was wide awake, she was able to go back to sleep, but by then was wide awake.
She was out of sorts and fretting most of the evening. She didn't want me out of her sight. The nurse who was her day nurse the day she was told she might get the transplant came in again to check on her as outreach from ICU to step down. She told Dew not to be afraid she was going crazy as the drugs during this phase of transplant are very destabilizing physically, mentally and emotionally. She said that they start the post-transplant period with a very high dose of steriods, then bring them down very rapidly which plays havoc with people, even if you don't add in almost dying and then going through the trauma of major surgery and all the mix of all the other drugs combined. She told Dew to cut herself some slack. She said, "You are in a fish bowl, being observed 24/7 and you are going through all this immense trauma and drug induced instability. You can't just have a bad moment without someone noticing it. She said the nurses can go home and have a cry in the privacy of their own homes, but the patients don't have that luxury." Basically she told Dew to stop worrying about being perfect for everyone else when she is going through hell. However, her perfectionism is a trait I have tried unsuccessfully to break her of for decades. I even sent her to India to try to crack that perfectionism and only slightly succeeded in making a small dent in it.
Dew also had one pill with corn in it today. They are intending to increase the number of pills with corn in them over the next few days. I wondered if that had anything with her doing so much worse today physically and emotionally suddenly as they have been changing the steriods for a while and she was doing great. Let us just hope that increasing the dose of the pills with corn will not tip her over the edge again and set her back with anaphylaxis.
Dew Strong Enough to Receive Visitors!
DAY SEVENTEEN - POST TRANSPLANT - December 21, 2013 - All of the previous posts were leading up to the following. Dew is feeling strong enough to receive healthy visitors, wearing hospital masks now. So if anyone really wants to come at this busy time of year, please do. However, if you even suspect that you might have been exposed to a cold, flu, or worse, or if one or more of your family members are sick, please don't come.
Also, if she goes into anaphylaxis, I will have to rescind the invitation! But despite all these caveats, please come if you have time and want to. Her grandparents and Aunt came for a visit today for the first time since a couple of weeks before she went into the ICU, and she was up to seeing them.
Tonight I was going to leave early, around 9:30 pm, so I could get to the grocery store to get some food for her for tomorrow before the store closed at 10. But she didn't want me to leave as I was reading her your posts. We started back at the beginning of the day she had the ECMO surgery and went into ICU. This time, she wanted to hear my posts and your comments, prayers and support as we went through so she could understand what had happened all that time. We got up to about November 25. She was really amazed at how you were all sending such love, prayers and support to get her through it all when we really didn't know if she would survive until the transplant. She was falling asleep, and I asked her if I should stop and let her sleep, but she wanted me to keep reading, and finally I stopped when she was sound asleep.
We have been lucky enough to have the same very nice nurse now 3 days in a row and will have her tomorrow, because nurses are needing to work overtime as colleagues are on vacation. This is great for continuity. Just wish they could try to have the same nurse on, even on rotation on a regular basis, as then they are more effective as they know where the patient is and have strategies for helping them with difficulties and can work on building strength day by day when the physiotherapists are not around. Or at least this one does.
The first day Dew had her, she gave Dew a bath in the bed. It was the closest thing to a real bath Dew has had in hospital. This nurse is not afraid of using tons of soapy water and then lots of rinse water (the beds are sealed plastic). She couldn't do Dew's hair, but Dew felt cleaner than at any time in hospital. Another nurse told us that Dew's nurse is "the queen of baths" and she really is! Dew is really hoping for the day she can have a shower and wash her hair. The oxygen is no longer a limiting factor - it is the tracheotomy. Tonight's nurse thought the trach might be removed and closed even tomorrow. She was surprised it had not already been removed, until we explained about the experiment with anaphylaxis that the doctors plan. Then she said it might be at least another week before the trach comes out.
No More Feeding Tube / No More Catheter / YEAH!!!
DAY SEVENTEEN - POST TRANSPLANT - December 21, 2013 - I'd been thinking that in a few more days, Dew might be able to start doing some of her own posting. Left her alone with the computer for 45 minutes, and came back and found she had used the computer to take her picture and had been able to do a little posting! Pretty soon I will not need to "Commandeer" her facebook, as Rocque put it!
The doctors on today are different than yesterday's doctors and I guess they weren't that keen to risk having her go into anaphylaxis on their watch, so the experiment with the medications with corn will wait until the other doctors rotate back.
Dew's kidneys are still pretty under the weather from all the drugs, but are better than they were. No other news yet about the badly functioning diaphram. On the whole now, she is doing much better! 1 1/4 laps of the ICU/Step down unit and 20 minutes on the non-resistance bike. A few days ago after she had semi-collapsed again trying to get Dew from chair to bed, they went back to using the hoist. But hopefully soon, she will be able to do that too.
Corn Starch Pills - What will They Think of Next?
DAY SIXTEEN - POST TRANSPLANT - December 20, 2013, 8:00 p.m. - The hospital's plan for tomorrow is to give Dew small amounts of corn starch in pills starting tomorrow. They say that they can not get corn free medications that they are used to working with. They said that they are not sure her anaphylactic reaction was definitely caused by the corn, so want to test it and hope she can tolerate small amounts. They will not give her corn starch and try to desensitize her. Dew is scared that even the small amounts in the medications will set off the anaphylaxis again. Hopefully it will not, but it will maintain her corn allergy at heightened levels, so if her total load gets too high another time, she could go into anaphylaxis at a later date when she is not being monitored. Epipens only give you about 10 minutes and there are plenty of places you can't get to a hospital in 30 minutes. And what happens if you and your multiple epipens are separated?
We have been saying that anaphylaxis over the long run could cut short her life since corn is a lot harder to avoid than say, a peanut allergy, as corn is in virtually everything, whereas peanuts are in a far smaller % of foods, drugs, personal care products, etc, and peanuts tend to be somewhat better labelled, although still not well enough. If they had not pushed her into anaphylaxis with the feeding formulas, there would have been a much smaller risk with the drugs - just itchiness and possibly small hives. If they could now allow her time for her antibodies to subside, there would be a lower risk of anaphylaxis. But they are saying that they don't know how effective the substitute medications that they have her on currently will work to prevent rejection and want to use their regular anti-rejection drugs.
They said that the manufacturers are not willing to produce corn-free versions of their drugs, despite it being a major allergen.
So Dew's life is now at risk with or without the drugs with the corn in them. Let us hope that the amounts are small enough not to set off anaphylaxis and that constant lower grade inflammation from ingesting small levels of allergens do not interfere with the transplant or her recovery either.
TGH Staff Believe They Are GOD Himself and Can Cure Allergies in one day!
DAY SIXTEEN - POST TRANSPLANT - December 20, 2013 - Today the transplant doctor came in and told Dew that avoiding corn would limit her treatment options since most of the drugs she needs have corn in them. So they decided that they would break her of her corn allergy today by giving her more corn starch. They claim they can cure her of her allergy in one day and then it will be safe forever more to give her anything with corn in it. They are experts in this because they claim they once cured someone of their anaphylactic reaction to penicillin by giving them penicillin. Since she still has a tracheotomy they think this would be a safe thing to do.
They were going to embark on this venture first thing this morning. Dew insisted on calling me and I spoke with the doctor. He gave me no details, but suggested I come in to speak with him. I knew that they would once again ignore my information so I told them to speak with Dew's doctor of environmental medicine in Ottawa, or her doctor here in Toronto who is the Director of the Environmental Health Unit at Women's College Hospital. I told them that our doctor was only available until noon today and gave them her phone number. Then I called our doctor's office to let the nurse know the situation. So far they have not come back. Dew is too afraid to say no to anything they come up with.
Dew Remembering Very Little of ICU Journey
DAY FIFTEEN - POST TRANSPLANT - December 19, 2013 - 11:00 p.m. - Tonight I read Dew your comments, wishes and prayers all the way back to Dec 1, pre-transplant. All this time, when she has been so ill, when she was conscious, albeit at times only for seconds, she understood and responded to information and questions from the doctors, nurses and me. I have not yet read her back my posts, as they are all things she experienced, so I was only reading to her what all of you said to her. However, I usually gave her a one sentence run down on what I had been saying that day that you were responding to.Â
SHE REMEMBERS SO VERY LITTLE OF WHAT HAPPENED AFTER SHE ENDED UP ON ECMO IN ICU! As we went back through the comments and postings, she got confused and I would say, "But you remember when this happened?" Sometimes, after I reminded her she would have a vague foggy recollection or it would slightly ring a bell, or it would sound sort of right although she didn't really remember these things happening, but some things she simply didn't remember at all. She did not remember, for example, having the ventilator associated pneumonia, although she did very vaguely sort of recall, when reminded, that there had been a doubt about her being on the transplant list at the end just prior to transplant. She did not remember Dr. Bell coming to her room the day before she got the transplant. Even visits of friends were somewhat blurry a few days before she'd asked for no more visitors.Â
We had been told that she would remember very little of what happened in ICU but I assumed that was just a few days post-transplant, and I thought in her case it was different because she responded in a conscious and normal way to questions all through the time she was in ICU and had opinions and very lucid input to decisions and discussions. The nurses had her sitting up, and even peddling that little non-resistance bike, yet she was not really there enough to form long term memories, or maybe the drugs prevented her long term memory from forming. She certainly had short term memory most of the time. She did have a problem understanding complicated plots of books that she wanted me to read, so I ended up. at her request, reading her a children's book, an old favourite that a friend had brought, "Ramona the Brave". I am not sure if she even remembers that.
It is probably a blessing that she does not remember most of what happened, but it was a shock to me that she remembers virtually nothing of her time in ICU (about 3 weeks: November 22 - nearly mid-December). When she is well enough, she can read my posts and find out what happened. Right now, she is just very much enjoying hearing all your comments, prayers, support and wishes which have deeply touched her as I read them to her tonight. We both cried over some of your entries, and laughed with others' comments and pictures, and were moved by yet others. Thank-you all for the gift of your support and love.
I am hoping within a few days, she will be up to using the computer herself. But right now, her concentration, physical abilities and ability to handle to weight of the laptop are not yet there.Â
I think soon she will be up to seeing visitors, so if anyone wants to come, (and it is a very busy time of the year for most, so I doubt many people will have the time for the next little while), please send me an e-mail or FB message, or talk to me in advance, and I will let you know if she is likely to be up to visiting when you think you might be able visit. Clearly I was previously vastly over-estimating where she was at. Right now we are still taking it one day at a time, but she is definitely much better than before, but still has a long way to recover.
Drainage Tubes Removed / BP Down to Normal Range
DAY FIFTEEN - POST TRANSPLANT - December 19, 2013, 8:00 p.m. - The nurse yesterday explained that Dew's seizures might all have been caused by the initial doses of cyclosporin, the first anti-rejection medication they gave her. He said it was the cyclosporin which caused the high blood pressure and damage from swelling in the brain which caused the seizures. He said that even though she was not on cyclosporin when the second and third seizures happened, it was the residual effects of the drug.
Dew's blood pressure remained high up until yesterday - over 160/80 even yesterday afternoon. The nurse was just saying that they had increased her blood pressure medication but it might be difficult to bring down the high blood pressure for some time. When she took the blood pressure again, it had dropped to 103/70. It is fluctuating between 103 and 115/70 today. So hopefully that means that there will not be further seizures.
Today Dew ate! She'd had no obvious ill effects from breaking her fast last night so abruptly. For breakfast today, she had carrot lemon dill soup that a friend made, and also had that for dinner. For lunch she had the usual baked chicken and white minute rice that she gets for every meal from the hospital. She tried to eat some salad, but found it difficult to chew and swallow. I also brought her some salad wraps but she could only eat one because, like salad, it was too hard to chew and swallow.
Yesterday the plan had been that Dew would have the TPN to her small intestine discontinued today. But the doctors today wanted to continue it. Dew said that it was her Nurse today, who is really super, and the dietician who intervened and said that now she is eating foods that she tolerates, there is no point continuing with TPN. That was the same dietician from ICU, who is no longer responsible for Dew in Step Down, but she still came over to try to intervene and help today. I told you she was a nice lady - just very constrained by the resources in the hospital and the limitations of the hospital protocols. I think she will also be very relieved not to have the challenges Dew presented anymore, but she was learning and trying hard to help, and went out of her way today to advocate to help Dew, even after Dew was no longer her responsibility.
So Dew still has the tube down her nose to her small intestine. I really hope they will take it out tomorrow. She did, however, have all her chest drain tubing removed. After the operation she had 6 tubes draining her chest, and today, none.
They took Dew for an ultrasound today to check her diaphram. She still has a partly collapsed right lung at the bottom which they were hoping her diaphram would reinflate and that her chest cavity would expand to make room for. They said her diaphram is not working properly - perhaps due to trauma from the transplant surgery. The doctor said it is not usually reversable, but there is still a chance that it might begin to work properly again. In any case, her oxygen saturation rates remain good and she is on even less oxygen.
Yesterday, the Respiratory Technician wanted her on 2 litres per minute and was going to consider reducing to 1 litre per minute today. In the ICU, the nurses don't take a step without the OK of the RT, but it is different here. Last night the night nurse turned Dew's oxygen down to one. She told him the RT didn't want to reduce it further until today, but he said, "You really don't need it at all any more", and turned it down. That was my suspicion for the past few days - that Dew's blood saturation levels are good without oxygen - but the RTs want to prevent going too fast and stressing the lungs too soon. The nurse took her off oxygen for a few minutes and Dew didn't fall below 94% oxygen saturation, which is very acceptable. The RTs have been surprised how fast she is adjusting to breathing, but want to be somewhat cautious.
There was a new empty room today that opened up, but the nurse in charge refused to move Dew there. I asked if they would consider it for tomorrow and they said they would, but I am pretty sure that that was just a way to be rid of me, and that they will not move her. They keep saying she won't be here long and will be going down to the regular wards in 4 or 5 days.
The patient from last night is still here, but is calm today. They got someone to sit with him all day today. The nurses last night were saying that the transplant medications can really cause problems in patients.
Dew Moved to Step Down - with a patient from hell!
DAY FOURTEEN - POST TRANSPLANT - December 18, 2013, midnight - So it was a really good day for Dew until early evening. They told her she was going to Step Down today around 5:30. ICU needed her bed for someone else but Step Down was dragging its feet and didn`t want to take her until about 8 pm. So the ICU nurse took the bull by the horns at about 6:30 and moved her over to the Step Down. Step Down had not finished cleaning the room. A friend and I were helping move her things to the new room and so realized what the problem appeared to be. The patient in the next fish bowl over was raging for hours at the nurse, then a doctor, etc. So the nurse in Step down was overwhelmed and didn`t want to take on a second patient until her shift ended.
Dew is so emotionally sensitive that I knew that this was going to be a really bad situation for her - even though he was not raging at her. But she gets upset when other people are yelling and shouting around her. I asked if there was another room available, although I knew there was not, or there would not be the issue about the timing of the transfer. The lovely respiratory technologist had told Dew that she was not wanting to push Dew off oxygen too fast, and that Dew had been on 3 litres a minute yesterday and the RT had decreased it to 2 litres a minute today, but did not want to reduce it further until tomorrow, assuming that things went well on 2 litres per minute today and tonight. She advised us to ask the evening nurse tonight to move Dew so it would be on the radar for tomorrow if a room became available. She also said that she didn`t expect to see Dew again as the RT was going on vacation and was hoping Dew would continue to do so well, that Dew would not still be in ICU or Step Down when she returned. Anyway she said it was her hope that Dew would be well on her way to recovery by the time she returned and would be down on the 7th floor. A very sweet nurse yesterday said she would not be back in ICU for several days and that she really liked Dew but it would be a good thing if she did not have Dew as a patient again, as that would mean Dew was doing well. Today`s nurse kindly asked Dew to come back to ICU after she was discharged from the hospital and say hello to whoever was on that day. She said they change around, but whoever was on that day would love to see her recovered. She also told me that I was ``a good advocate for my daughter``.
Dew has been so brave throughout all the harrowing experiences she has had in hospital to date. Tonight, however, she was quite upset about all the shouting and screaming next door. Finally the new young male nurse after shift change seemed to get him somewhat less agitated. However, all the nurse`s efforts were in the other room, on trying to keep the guy somewhat less upset. Dew said,``Tonight I don`t have a nurse at all``. She had been worried that she would be too much work for the step down nurse who has two patients instead of the one patient per nurse in ICU. When the young male nurse finally was able to come and check on Dew, I asked if there was a possibility of changing her room. He was already exhausted from dealing with the situation next door, and had little sympathy. He said that comfort was low on the list of priorities and the main issue was to improve her medical stability and that no other patient was going to want to change with Dew. I said, "Of course not, and not tonight, but if a room opens up tomorrow, can we move her there?". He said that Dew could ask the in-charge tomorrow, but didn`t think it would be likely.
Then the man in the next room got further agitated again and was shouting for food. The nurse was trying to scrounge something up, but there really was nothing at that hour (around 9 pm). So Dew asked me to take the nurse the unopened container of jello they had given her and her unopened cranberry juice which she could not have as it has corn in it, and offer them to the man in the next room. The nurse took it, but the man was shouting that he wanted pureed vegetables (can`t disagree with him there -- the hospital is VERY short on vegetables!), so Dew`s attempt to help, didn`t.
Dew was upset about the new place not only because of all the shouting but also because the room she is in with the glass front is at the end of an enormous length of corridor so she had no privacy at all. Also the bed in Step Down is not designed to be comfortable, as the beds in ICU are, so she could not find a position in which she was not in pain. The nurse offered her narcotics, but she didn`t want to go back to being semiconscious and didn`t want to suppress her breathing. But finally after suffering a lot for a few hours, she agreed to take a small dose of the narcotics.
She was agitated and couldn`t rest. She had had only 4 hours sleep the night before and could not get comfortable enough to be able to sleep. She ended up in tears for the very first time since all this started, saying that she wished she could have stayed in ICU. She didn`t want to be in this place, and wished we could just go home. She said if she had not gone with the cork on the ventilator full time today, they would have kept her back a day in ICU. I finally got her calmed down somewhat and then stupidly made an allusion to her donor. If I`d thought she was upset before, that really did it. She cried about his death, and she wanted to write the letter to his family right then and there, but was too upset to do it, too exhausted, and in too much pain, physically and emotionally. Anyway she finally settled a bit and was going to try to sleep, so I had to leave her for the night. I hope she gets some sleep tonight!
dew Finally Got to Eat Real Food Today!
DAY FOURTEEN - POST TRANSPLANT - December 18, 2013, 11:50 p.m. - Today was a really good day for Dew up until around 6:30 pm.
She went for a swallow test with the speech language pathologist, and then for an x-ray with dye and passed them both. Because the medical transport people were nearly an hour late, she missed the first attempt to give her the test. The nurse said Dew was very lucky because usually when someone has a tracheotomy downsized it is days before they get around to doing the tests. Further, she said someone really put on a push for getting Dew a second appointment, because the machine was going for servicing tonight and would not be back in use until after Christmas! The nurse said that lots of patients get very malnourished while in ICU because they can`t eat for weeks, but the hospital`s priority is to address their life-threatening problems, so the hospital generally doesn`t worry too much about the malnutrition. She said it wasn`t a good thing, but they can`t address everything. So she was really lucky that whoever was looking out for Dew made it happen today (I think the speech language pathologist). The GREAT news is that she can EAT again, despite the tracheotomy!
I am hoping that they would let her eat pureed liquid soups and that kind of thing to start with, so had stocked up on a couple of tolerated pureed soups for her as well as almond milk and coconut milk to which I could add things in liquid form. But they came back with virtually no restrictions on her eating. She is not allowed to use a straw and has to remain in an upright seated position for at least a half hour after eating, but we don`t consider those to be a barrier to eating!
Although I would have preferred her to start with lighter liquids after more than a month without food, she wanted to go for solid food since she is so hungry. They brought her the same meal they always give her in this hospital - a small piece of baked chicken, lots of minute rice and a little bit of vegetable. She has now had that meal more than 85 times, but not for over a month now, so it was palatable. As I said, meat would not have been my first choice to break a fast of that long, but I could hardly tell her not to eat the food they brought, when she has been so hungry for so long. She listened to caution and only ate half her dinner, although she was still hungry, as I was afraid if she overdid it and ate a full meal with meat the very first time after a month of fasting that she would regret it.
If all goes well tomorrow she can eat more and I will be prepared to bring her solid food, not just liquid food.
If all goes well, I think they might take out the nose tube down into her small intestine tomorrow.
Step Down Explained
DAY THIRTEEN - POST TRANSPLANT - Dec. 17, 2013, 11:30 p.m. - Step down is the place between Intensive Care Unit and the regular hospital ward. In ICU, there is one nurse per patient. They are not just looking after that one patient, they also have paper work and hand-overs to the next shift, etc. They also help out when one nurse needs several nurses to turn a patient, or help them into the chair, or deal with seizures, etc.
But for the most part, they have one patient they are responsible for. In Step Down, the nurse has 2 patients that she is responsible for and sits in a glass booth between the 2 fish bowl patient rooms (curtains are drawn as needed) and can monitor both patients-- visually and also on the monitors. Patients in Step Down are considered to be less likely to go into sudden crisis as you don't want 2 critically ill patients going into crisis simultaneously. In the regular hospital ward, there are many patients per nurse and patients there need to be relatively stable and able to handle some of their own care.
A young man who had his transplant after Dew has already gone to step down, but he did not suffer seizures, which set Dew back significantly.
Dew was getting a bit tired of breathing off the trach mask, by close to 9 pm. tonight She had wanted to go through the night without it, but the respiratory technician said that she would be having heart palpatations all night if she left Dew on just the nasal canula overnight the first time. She was amazed that Dew was doing so well off the trach mask and that Dew had stayed off for more than 5 hours. She said many people can only handle a 1/2 hour the first time and need to build up slowly. It looks like Dew may be able to build up fairly quickly. The sooner she can do that, the sooner they will close the tracheotomy and the sooner she can start to eat real food. She has been very hungry the past few days, despite the diarrhea. and is desperate to eat.
Tomorrow the speak language pathologist will assess her swallowing ability and may allow her some liquids by throat - but that depends on the outcome of the tests. Dew was hoping for crackers, but I told her that there was no way she would start with anything that solid after a month of not eating. Food will need to be reintroduced gradually! They started the TPN via the small intestine tonight, so I really hope she doesnpt have another reaction and get set back again.
The hospital is finally taking care by checking Dew's medicines to ensure that they don't contain gluten, corn or dairy products/lactose. So that is delaying the start of some medications, but I am glad they are finally being more careful.
Her blood pressure was over 160/85 tonight. They said that they were going to increase the blood pressure medication (necessary because other drugs are raising her blood pressure). Let us hope that they get it down again quickly in case they are correct that the high blood pressure is causing the swelling of one part of her brain, which was responsible for the seizures.
Now that she is largely off the narcotics, she is alert and conscious. Tonight she watched a movie on a DVD player a previous kind nurse had parked in her room.
I think in a day or two she may be up to having visitors, but I will wait until she says she is ready. But unless something else happens, I think we are getting close. A lot of things she couldn't even imagine doing a week ago, now have more interest for her although her life remains severely restricted.
Dew is making good use of her whisper. Tonight's night nurse has kept kicking me out to the waiting room while she does her assessments each evening, even though I have explained to her that Dew wants me to stay with her, and I have had to go reluctantly. But when Dew begged the nurse in her own whisper to let me stay tonight, the nurse finally relented for tonight.
Her edema is coming down. Her feet and ankles now look like human feet that are swollen, rather than some cross between a monster's feet and an alien's! Her knees are still hurting and are also swollen, but her edema is vastly reduced.
Finally a bath - albeit with damp cloths
DAY THIRTEEN - POST TRANSPLANT - December 17, 2013, 6:30 p.m. - If all goes well, Dew will move to Step Down unit tomorrow. They came today and said they were planning to send her to Step Down today, but then an emergency came up and they needed that room for someone else. So tomorrow may be the day she goes to Step Down. Dew is a bit worried about that. She says she is wearing her nurse out as it is, when there is one nurse for one patient. She doesn't know how the nurse will be able to manage her and another patient.
But she is getting stronger, and hopefully once she is off the trach mask and on back on real food that she tolerates, the problems from the diarrhea and the extra nursing she needs will be less. She is able to help the nurses turn her now instead of just being a sack of potatoes, so she has increased her strength somewhat already.
Well, Dew's request to have time with just me for a bit, was short-lived as the nurse is going to try to give her a "bathe" - just damp cloths still. No shower for the past 2 months! So back to giving you an update.
Right now the nurses are trying to get Dew out of the chair and into the bed. That is very scary for Dew as the chair is much lower than the bed and unlike when she walks, there is nothing to hang on to except the two nurses trying to maneuver her. Because she now has a voice, albeit more of a whisper, she was able to advocate on her own behalf to ask the nurse not to kick me out of the room while they moved her and washed her. The nurse was reluctant. but finally agreed when she saw it was really important to Dew to have me with her and not get chased off again to the far off reaches of the ICU waiting room from which there are barriers to re-entry.
Today, as they tried to move Dew from the chair to the bed, her knees buckled and she was collapsing. The nurses managed to prevent her from falling, but the two of them had more than their hands full. I had to help move the chair out of the way, and Dew was tangled in all the tubes and wires coming out of her, so it took about 5 minutes for the nurses to get everything untangled and get her lying down. Yesterday, when they tried to move her to the new room, the 2 nurses had their hands full and knocked over the IV stand, and I had to catch it and put it back upright. So there are actually some benefits to having an extra pair of hands sometimes.
When she walks around the corridor of the ICU, she is in a 3-sided sturdy apparatus that has padded arms encircling her to lean on and hold on to. She did that walking again today. Dew had told the nurse that she didn't think she would be able to help enough to move her from the chair to the bed. After it was so difficult, the nurse said that maybe the physio could add something to make the chair higher, so it would not be so difficult tomorrow until she grows a bit stronger.
Back to the ventilator cap. The intent is to build her muscles and lungs up until she can breath on her own without oxygen. Having the cap over the ventilator and using the nasal canula is the next step after having weaned her off the ventilator. The respiratory technician was really surprised that Dew was not finding breathing through the nasal canula on only 3 litres a minute not too tiring. She said she didn't dare leave Dew overnight with the cap on, but tomorrow she could come back and cap the trach again and let her talk and breathe on her own again. Once she has gone 48 hours completely off the trach mask, they will take the tracheotomy out and let her throat heal.
Feeding Tube Finally Inserted in Small Intestine
DAY THIRTEEN - POST TRANSPLANT - December 17, 2013, 5:30 p.m. - Today a lot of things happened. Dew had the feeding tube inserted into her small intestine - something the hospital has been attempting to do for weeks without success until today. Of course, it was accompanied again by a lot of coughing, choking and vomiting. So they gave up on putting it through her mouth and put a smaller tube into her nose down to the small intestine. Tomorrow they will start the TPN feeding through her small intestine, but today they are still giving it intravenously.
They also downsized the tracheotomy slightly. This afternoon, they came and covered it up with a cap and said that they would leave the cap on for 1-2 hours. It is about 2 hours now. Just as I was typing that, the respiratory technician came in and said she had meant to arrive earlier, to take the cap off and put Dew back on the trach mask. While Dew is "corked" as they call it, she can whisper and has a bit of a voice. I said that Dew was enjoying having a voice, so she was surprised that Dew was not needing to go back on the trach mask, and was doing well on the nasal prongs at oxygen of only 3 litres per minute, but said she would come back before she leaves tonight and take off the cap for overnight and put her on the trach mask. More later but Dew wants my attention!
DAY TWELVE - POST TRANSPLANT - December 16, 2013, 10:00 p.m. - Suddenly, just before 10 pm tonight, they decided to move Dew to an entirely different area of the ICU. Now in Rm 130. Different hall, different corridor, different direction. everything. They said it is not that she is going to "step down" - that may happen as early as tomorrow or a day or so from now. They say, however, that this area is for less critically ill ICU patients. I think they must have someone severely ill just brought in and need Dew's old room for that person, so moving her so late at night.
Dew is still on 10th floor, but when you enter ICU you don't go straight anymore, turn right. Not yet sure of all the twists and turns to get to new room. But it is 130 still MS ICU. Still 10 W.
Dew Walked "Around the Block"
DAY TWELVE - POST TRANSPLANT - December 16, 2013, 6:30 p.m. - Today the physiotherapist got Dew out of bed and onto the walker and she walked down the hall of the ICU. The ICU is a square so she "walked around the block"! Dew said she didn't think she would make it, but she did! Then she sat in the chair for 4 hours which continues to be physiotherapy as well. However, they didn't use the hoist today to get her from the chair to the bed and since the chair is much lower than the bed, it was a big struggle to get her to stand and then try to get onto the bed. The first time trying to get up out of the chair, she didn't manage it at all. Two nurses were trying to help lift her under her arms and were telling her to use her arms to push up, but it didn't work. So she had a slight reprieve and then they tried again. It was pretty exhausting, but she did it.
Last Thursday Dew's shins and feet were so massively swollen with edema that her skin was stretched so far it was shiny and I was afraid it would start to fissure. Alison and I massaged her legs and feet to try to help move the excess fluid out, but after more than an hour, it really didn't seem like there was much difference. She was on diuretics then and still is. Yesterday she still had footballs on the ends of her skinny little legs, but the swelling in her legs was much reduced. So I worked yesterday on reducing those footballs, and there was a visible difference after half and hour on each foot. Her foot came down to about 1/2 its size. Worked on them again today and they are more like swished baseballs than footballs now. Nurse just commented on how much liquid her body released in last few hours. She still has swelling, but she is beginning to look more like herself all over.
They did not downsize her tracheotomy today as they had suggested yesterday that they would since she has a slight cold and they want to keep the full tracheotomy in until they are sure that the cold will not get worse and affect her lungs and breathing.
Her blood pressure still remains relatively high for her. Right now it is 147/78. They have her on blood pressure medication to combat the other drugs that are raising her blood pressure. We are hoping that the seizures will not return and that the swollen area of her brain will heal. They will do another MRI in 2 weeks to check on her brain.
Again today she is not only conscious but alert and communicating with her white board. She is able to move her arms about in an animated way, which she had not been able to do for weeks. She still has difficulty moving too much in bed, but is able to assist the nurses in repositioning her now, and only needs one or two nurses to do so, not the 8 or 9 she had when on ECMO and the respirator.
She continues to be off the ventilator completely now with just the oxygen mask over her tracheotomy. The tracheotomy will first be downsized, hopefully soon, and then eventually removed. Then she will need a bit of time to learn to speak again, I am told.
Tomorrow they are going to try again to get the feeding tube into Dew's small intestine, but at the moment are giving her the IV TPN.
The other transplant patient that we know, who had his transplant about 3 weeks before Dew, got a day pass yesterday to go his big family Christmas with 80 relatives (he wore a mask due to being immuno-compromised) and today he was released from hospital. He still has to come back almost every day to the hospital for the next 3-4 months, but is eating normally and walking. He is looking thin, but much better than pre-transplant. Dew's situation was rather more complicated than his, but we can still hope that she will be able to be out of hospital in a month or so and then will just need to come in to Toronto hospital daily for several months.
Dew is Alert Today & Walked a Few Steps!
DAY ELEVEN - POST TRANSPLANT - December 15, 2013, 8:00 p.m. - Dew is looking much better today. Where she was previously conscious, she is now alert too.
On Friday, they still failed to get the feeding tube into her small intestine so they started her on IV TPN - which is the normal method for delivering TPN but the doctor says it entails some significant risks for transplant patients. We are hoping it will only be for a short time. But getting some nutrition may have helped, I think. Last week she could not stand even for a millisecond. Today (albeit using a walker), she walked several steps. That is about the first time since October 15th that she has walked a few steps.
However, she has also had diarrhea for the last 4 days. The tests indicate that it is NOT C. difficile, which is good. They are giving her sugar water into her stomach, which might well be the cause.
The doctors came by today and I asked about the results of the EEG and the MRI with respect to the seizures. They said that the anti-rejection drug that they were using to replace the cyclosporin causes high blood pressure which may be the reason that she has swelling in one particular place at the back of her brain.
So they changed the anti-rejection medication again and are also using other drugs to reduce her blood pressure. They want to get her blood pressure down to between 120 and 140. It had been as high as about 160. Today it was about 147/74. Once her blood pressure is reduced they may change the anti-rejection medication back again.
This is the first time in her life that Dew's blood pressure is elevated. It is from the drugs. Her normal blood pressure is very low. The machine in our doctor's office could never read her blood pressure because her blood pressure was so low and the nurse had to read it manually with a stethoscope, the old fashioned way.
Thanks for Braving the Storm
DAY TEN - POST TRANSPLANT - December 14, 2013 - Thanks to all who braved the storm to come to the event tonight.
Thank-you so much to all the people who put in many weeks of planning and hard work and to the musicians and others who donated services and time and effort! I very much appreciate all your efforts.
Let us also pray for the donor and the donor's family
DAY NINE - POST TRANSPLANT - December 13, 2013, 9:50 p.m. - Dew regained consciousness about 10:30 am this morning. They did an MRI and an EEG. i am not sure what else they did as I could not be there today. Her friend and my sister stayed with her. She is scared by the additional Grand Mal seizures.
Given this is the eve of the celebration that tomorrow some of you are planning to have, I thought I should mention something about the other aspects of Dew's transplant.
All during the time Dew's health was deteriorating she didn't wish for the transplant or for new lungs. She said that if she hoped for new lungs, it was like wishing for someone else to die and she didn't want that. I also kept praying for her own lungs to heal, and for her to not need a transplant.
The wife of another transplant recipient who is wiser than me, and can more graciously accept a gift, told me that that is the wrong way to think about it. When someone decides to become a donor, they hope they will never die, but they are also hoping that if it is unavoidable, that at least others will benefit. She also said that for the donor's family members, there may be some very small solace in knowing that although they lost a family member, that even in death they helped others.
I know that if Dew had died pre-transplant or does not make it through to this transplant being successful, I would only feel overwhelming grief, even as I was agreeing to her organs helping others. But I think my friend is right that after many years, perhaps there would be some small solace in knowing that she had continued to help others.
I know so many of your are praying for Dew to come through this and to have a successful transplant and be able to have quality of life for some years.
Let us also pray for the donor and the donor's family whose loss is irreparable.
Thanks so much to all of you for your support on whatever continent you are. Thank-you to those who will celebrate tomorrow night. Thank-you to all the people who have put so much enormous work into creating tomorrow's event. I appreciate all of you and all your are doing to help Dew and I! Thank-you again - your caring and support is overwhelming and awe inspiring.
Leslirae (Dew's Mom)
High BP-related Seizures?
DAY NINE - POST TRANSPLANT - December 13, 2013, 8:15 pm - From Alison Empey: The doctor thinks that Dew's seizures may be high blood pressure related and completely reversible. Giving her blood pressure meds to reduce her blood pressure.
Crossing my fingers that that is all it is.
A Third Grand Mal Seizure
DAY EIGHT - POST TRANSPLANT - December 12, 2013 - Dew just had a third Grand mal seizure, less than 2 hours after the last one. This seizure happened WHILE she was on anti-seizure medicines. So they have sedated her and will not allow her to regain consciousness until the EEG tomorrow and they may also do the EEG with her sedated.
This time the seizure started in a similar way, looking up. She grabbed the nurses hand with one hand and then starting grabbing at the air with the other. Then she started full body seizing and jerking, and biting the feeding tube and must have bit her lip or her tongue because blood came out of her mouth.
They said other anti-rejection medications can also cause seizures, but none are as problematic as cyclosporin - which she is not on. The others only very rarely cause seizures but it is not clear that the anti-rejection medications are the cause - only that that is a possibility.
Another Grand Mal Seizure
DAY EIGHT - POST TRANSPLANT - December 12, 2013, 7:20 p.m. - About 20 minutes ago, Dew had another Grand mal seizure at about 7:40 pm. I had just been stroking her forehead and said I love her and she had mouthed that she loved me. I went to sit down and suddenly she looked up at the ceiling and started reaching for something in the air above, higher and higher. The first thing that came to my mind was the descriptions of when Grandpa was dying of cancer and would try to grab the butterflies out of the air. I wondered if she was hallucinating with the narcotics or whether she was starting a seizure. I took the reaching hand and asked what she was doing or seeing and she didn't respond. Then her head twisted, her face distorted terribly and I didn't wait until she started the seizure. I ran and got the nurses. It had only been about 15 seconds for me to get from the chair, grab her hand and ask her what was happening and another few seconds to run to get the nurses.
By then, she was in the seizure and shaking dreadfully for about a minute or so, and started foaming at the mouth and the nurses were suctioning her. Before they gave her any drugs she then calmed but kept biting and moving her lips and not responding to anyone so I said, "She has not come out of it yet. She is not responding. That went on for another couple of minutes and then she did start responding, squeezing hands and nodding to questions. Then she tried to rip out her feeding tube and started staring at the wires and tubes and attachments all over her body, feeling the tracheotomy, and moving her nightgown to stare at all the stuff stuck in her body as if she had never seen it before. I asked if she remembered all those pieces of equipment being put into and on her body and she said, "No". I asked if she remembered that she had had a transplant and she sort of came to and said yes. But then started staring all over her body again and tried to remove the adhesive holding the feeding tube to her cheek. The nurses and I had to keep reminding her not to pull anything out of her body.
She remembered reaching up but nothing after that. Unlike last time, she did not conk out afterwards and remained alert. They are giving her anti-seizure medications again. Tomorrow they will do an EEC because of the seizures, an MRI to find out about the bulging eye and maybe the seizures, as well as inserting the food tubing into her intestines. They were planning to down-size her ventilator, but as soon as she had the seizure they put her back on the ventilator and may not want to change it now. She had gone more than 36 hours off the ventilator straight and was doing well. The doctor said that her electrolytes were fine this morning, and they deep giving her electrolytes intravenously so she didn't think the prolonged lack of nutrition was the cause of the seizure, although lack of nutrition can cause this kind of seizure. She is not on cyclosporin now, so that is not the reason she had the seizure.
Before all this, during the day today Dew had another bronchoscopy and her lungs were siphoned out again and a biopsy taken. This afternoon she had a CT scan because she has a "partially collapsed right lung". They said the CT scan showed that it was not too serious -- it is just that the pulmonary fibrosis and shrinkage of her old lungs had caused her chest to contract and while they expect her chest to recover and make enough room for the lungs, it will take quite a bit of physio to get her lungs to fully expand and for the collapsed portion to open up. But they say her lungs were properly sized for her height and that as she recovers her lungs will be the right size for her. Her oxygen saturation rates remain very good.
Feeding Tube Issues
DAY EIGHT - POST TRANSPLANT - December 12, 2013 - So today I arrived and they still could not get the tube into the small intestine. I told them, forget about getting things perfect, just give her some liquid food into her stomach - a little bit to try. If she does not vomit it up, as she has vomited the TPN, that is a clue that the TPN is a problem for her. Then we can give her more liquefied food. Just give her a little bit first and see how it goes. Their response was that she might vomit it up and she might aspirate it. (As if that is not happening repeatedly while they play with the tubing and each time she has the TPN.)
I first spoke with this particular nice doctor over a week ago. and every day there is going to be progress tomorrow, but Dew still is not getting anything that she does not just vomit it up. So I asked to speak with that particular doctor again.
Before going on the ECMO, Dew had been too sick to eat much. Dew had the ECMO on Nov 22 and only ate 2 or 3 tiny bits one night before the tracheotomy was inserted on So other than 3 tiny bites that the great night nurse had managed in collaboration with me, with the intention that it be a start to reintroducing food, it has been nearly 4 weeks since Dew has eaten and certainly 3 weeks since Dew had the tracheotomy and could not eat. Although she did have the liquid feed that caused her to go into anaphylaxis after going on the ventilator, I am not sure how much of that she could absorb, being so allergic to it. So it is about a month since she has had any form of even synthetic nutrition that she has not vomited. Each day, I am told it will be solved tomorrow.
The doctor agreed with me that it has been too long and set a deadline for 48 hours for them to get the tube into her small intestine or start intravenous IV TPN. However, the doctor had previously succeeded in convincing me that intravenous TPN, which I had proposed to her a week ago as an option, is contraindicated for transplant patients. She says it gives a "highway for bacteria, viruses and yeast to get into the bloodstream and causes major risks for transplant patients." So neither of us was very happy about that solution.
I suggested that since the tube is in her stomach now, let us just try a bit of liquid food now. She asked what I had with me, and I was not fully prepared since we had not agreed on what I COULD buy to give her. But I had almond milk and powdered Greens Plus, and powdered Purples. She said that there were not enough calories in the almond milk. I said it was just a trial and I could blend in anything including almond butter which is high in protein and calories. Right now we just want to see if she tolerates a little food. She said it was not a good time because the regular doctors were going off duty and only interns would be there overnight, so best to wait until tomorrow. I was worried about further delay as I don't think fasting for so long for someone who has had such major surgery is safe, and that people who have tried to do similar things during hunger strikes can go into organ failure as early as 20-30 days fasting.
So she agreed with me again. She said it was a good thing to have a patient advocate to push them and that it had been far too long without a solution. She said that a 48-hour deadline is too long since tomorrow is Friday and the doctor does not want the problem to go into the weekend. So she told the intern to make sure that the radiologist puts the tube into the small intestine tomorrow at 9 am . She said if it is not successful tomorrow morning, they would start IV TPN. So none of this is what I wanted, but it does mean that Dew will start getting SOMETHING by Friday night or Saturday. Whether it is a safe something or not, I am not convinced. But it is something.
The doctor said since Dew is doing so well on the trach mask (now 36 hours off the ventilator) that it could be less than 2 weeks to get the tracheotomy closed. However, she said that within a day or two if all goes well, they will reduce the cuff around the ventilator and put in a smaller ventilator just for emergency purposes in case Dew catches pneumonia or something. She said after significantly reducing the size of everything in Dew's throat, they will see if she can't get some nutrition orally as well as through the intravenous TPN.
I told her I could not be at the hospital as I have to go to Puslinch tomorrow and she promised she would personally call me and let me know what happens tomorrow. She has been exceedingly kind
Dew alert and responsive
I wrote a lot about yesterday (December 11, 2013), but the battery crashed and I lost it all. So starting again.
Yesterday, Dew was alert most of the day for the first time.
Yesterday Dew was off the ventilator for 24 hours and just on the tracheotomy mask. She asked to go back on the ventilator last night, but when the nurse and I communicated with her about it, it was because she was so very hot. They heat the air going into the trach mask and run it over water to humidify it, and the heat coming out is very high. I had wondered why she is so very hot all the time, when at home she is cold but in even warmer surroundings. So instead of putting her back on the ventilator, the nurse turned the heat off for a while and she stayed off the ventilator for the whole day, and has not gone back on it yet, so it is now a day and a half without the ventilator.
She can not stand yet, but has been sitting in the chair, as you saw in the picture Alison took.
The food problem has NOT progressed. Yesterday, when I went in to the hospital, I asked about what the doctor had said about food and the nurse said brightly that the team decided not to give her food again.
I asked to speak to the doctor who had been so helpful and the nurse very brightly said that she had been on call last night, so today she was off. However, about an hour later I saw her in the hall, looking quite white, and she agreed to talk. She made a point of including Dew too, because Dew is not pretty conscious, which was great. The dietician had convinced the doctor that the only way to give Dew enough nutrition was to give her synthetics, not food. (Which has translated into nothing at all for another 2 days plus tons more radiation - to be explained below).
The doctor was willing to explain why they were going to bypass Dew's stomach by threading a feeding tube down her throat, through her stomach and into the small intestine. When I arrived, they had tried to do so and had failed as the tubing just coiled up in the stomach. The doctor said that they had used the wrong tubing and to take it out and start over again.
The doctors explained what the dietitian had convinced her that the dietitian is hoping that Dew is not allergic to the dextrin in TPN since it is in such an elemental state and she does not think Dew is showing signs of allergy. Dew pointed out that she is itchy all over which could well be a sign of an allergic reaction. But the doctor is hoping that the itchiness is being caused by another medication, instead of it being an allergic reaction.
She thinks that Dew is nauseated because of the anti-rejection medications which she describes as toxic and says it is normal for the body to try to reject those medications. Unfortunately, Dew would reject the lungs without the antirejection medications.
The doctor is hoping that the nausea from the drugs is making Dew throw up the TPN and putting the TPN into the small intestine will mean that she absorbs it. I am concerned that bypassing her body's defenses might create other problems if her body really is also rejecting the TPN.
So all day yesterday they tried to put a tube into Dew's intestine. They got the larger less flexible tube into her stomach (again with her choking and gagging), and then tried to advance it 10 cm at a time. Finally, after a whole day of this, the night nurse tried again and she just vomited up the tube. At the same time she aspirated the vomit into her bronchial tube and lungs. They suctioned her out as much as possible.
The nurse called the resident on duty, and the she said to put in a smaller tube to use to give her the crushed up medicines for tonight, then take that out tomorrow and try again with the bigger less flexible tube and try to get it into the small intestine. I said, "Then you will need to do a couple of x-rays tonight and more tomorrow as well as having her go through having the feeding tube put down her throat twice." She has had a couple of x-rays virtually every day for the past couple of weeks, as well as CT scans, MRIs etc. The CT and MRIs are worse than the x-rays, but it all adds up. They agreed that that is what would happen. I said, "Better to just put in one tube and its x-rays than doing it twice." So they agreed with that much. They did not give her the TPN yesterday either as she keeps vomiting it up and they are STILL trying to get the tube into her small intestine.
That was yesterday. Will post separately for today.
Dew Awake and More Communicative
DAY EIGHT - POST TRANSPLANT - From Alison Empey, Dew's Aunt, December 12, 2013 - I went to see Dew last night for about 40 minutes and again today for about 3 hours.
She is doing MUCH better than when I left on the weekend.
Yesterday, she was moving her arms..rubbing her nose and forehead, and pointing with muscle control...unlike last week when she was essentially a Raggedy Anne doll with no muscle control and just flayed her hands in a general direction. In the 40 minutes that I was there her eyes were open about 1/2 the time. Last week her eyes were open for 1-1.5 seconds each time... last night normally for about 6-10 seconds, although several times it was for a minute or so. I was able to say a few funnies and she smiled brightly.
Thus, a big improvement over the last time I saw her.
Today, however, there was an even BIGGER improvement. She was sitting in the chair when I arrived, and fully conscious. For the full 3 hours her eyes were open and she was communicative. The nurses needed to do a lot to her while I was there, and she wasn't thrilled, but she's a trooper.
She was very concerned because she needs an MRI to help explain the seizure on Sunday, but she was worried about how she would transfer onto the MRI bed because she's not strong enough to do so. Once we figured out what was upsetting her, the nurse reassured her that attendants would transfer her and she wouldn't have to do anything.
She's VERY upset that she's too weak to stand, let alone walk yet, but she used the portable bike for about 30 minutes today. This is a good thing not just for her muscles but her feet are still VERY swollen and the movement will help move the fluid from her feet.
Feeding remains an issue, but I'm not sure that at this point she really needs food yet; I wonder if the nausea of the feeding attempts is worth it.
They had hoped to get her off the ventilator for about 14 hours today, but then the nurse said they were going to try for 24...just heard by phone that she asked to be put back on the ventilator to sleep tonight. After so many years of self-monitoring her oxygen sats and such, I think she's feeling somewhat out of control, and doesn't trust her "new" body yet. Perhaps tomorrow she'll go off and stay off the ventilator; the trach removal process cannot begin until she can breathe on her own for about 48 hours...the sooner she's off the ventilator and the trach can be closed, the better.
She's still very bruised...some of the pics show this. And she's still in a lot of pain...4 out of 10 on a pain scale, but essentially just with Tylenol. The nurse kept encouraging her to use the narcotic pump but Dew prefers not to be drowsy.
She's still not up to having visitors...another few weeks I think.
In the innovation space we use a hockey stick analogy...the blade is the tough slugging of early work, which hopefully pays off with exponential growth on the shaft and handle of the stick. For Dew...based on my last two visits, I'd say she's just about off the blade and at the bottom of the shaft, on her way up.
Ventilator - Another Week At the Very Least
DAY SEVEN - POST TRANSPLANT - December 11, 2013, 1:00 a.m. - I spoke with the Respiratory Technician tonight and asked how soon she estimated Dew might be off the ventilator. She said that was unpredictable and explained a number of steps remaining, none of which can be combined and each requiring successful completion of the previous steps. I made my own estimate based on the steps she had outlined and asked, "So the very earliest possible time frame is a week?" She agreed that that would be the very soonest, but not to assume that that would be enough time for Dew, as it is individual. Once the ventilator is out, I assume there may be at least 2-3 days min for healing the trach before she can eat.
When I was fairly healthy, I once fasted for 12 days. Dew is close to 30 days, full of drugs, and recovering from a massive surgery. I have read of people on hunger strikes who go into organ failure and die somewhere after 20 or more days - certainly well before 30 days, and they are not on drugs. So we can't get lulled into a false sense that this problem will disappear in 2 or 3 days.
A Great Conversation with a Collaborative Doctor
DAY SIX - POST TRANSPLANT - December 10, 2013, 8:05 p.m. - I saw the doctor we had yesterday in the hall a few minutes ago, so I asked to speak with her. She graciously agreed. I explained that the idea of having Dew swallow food had been nixed and I was hoping that we could try food down the feeding tube. It was a GREAT conversation. She said that she had not completely given up on the idea of giving Dew liquids down her throat yet. She said some people can do it, so it still might be possible. She also was willing to explore the idea of pureed food or liquids down the feeding tube and thought my suggestions - for example almond milk etc might work too, or instead of having Dew swallow liquids down her throat. She asked whether Dew is still vomiting the TPN and said that there is also an option to insert the feeding tube past the stomach and right into the small intestine which bypasses the possibility of vomiting. She also said that hopefully Dew would be off the ventilator soon and could eat again. I said that last week I had thought that that might be imminent, but at this point, it still has not happened and that she can't go on not eating for this long.
Personally, from where I stand, if a body is rejecting something by vomiting it consistently, I would prefer not to bypass that defensive mechanism of the body to protect itself. The idea of more and deeper tubes is less appealing than just getting food into her stomach, rather than directly to the small intestine. But this doctor is VERY collaborative, wants to include me in the decision-making so I am not objecting to any options prematurely before we have had a chance to explore them and come to informed conclusions. She is more than willing to communicate and to explain her thinking, the options, and to get feedback and to incorporate it, so I will wait to see what she comes up with tomorrow. I thanked her for her openness and willingness to collaborate and she said that it was not easy dealing with a lot of food sensitivities and she knew I would do the same for her if I were in her position - which I would. She said she was just the quarterback and needed input from everyone. In her case, she is sincere. It is not just the propaganda on the hospital posters but the real thing. Since we first started dealing with this hospital this is the first time we have a doctor who is flexible and open to input and creative enough to use it. There have been many doctors who tried to be nice, but they were all hampered by the hospital procedures and protocols which do not incorporate the needs of persons disabled by environmental sensitivities and could not consider altering standard protocols and procedures in dealing with a patient with environmental sensitivities. This one is trying to deal with the realities of Dew's body, despite the hospital system and its barriers to providing appropriate health care for people disabled by environmental sensitivities.
She was also very sweet and said that she was the doctor who brought Dew from the ward to the ICU, and that it meant a lot to her personally for Dew to be doing well post transplant.
IF ONLY this doctor and that night nurse were in charge of hospital policies and training. Then we could be sure that things would go as well as possible and Dew would not be subjected to more preventable harm unnecessarily.
"Coca Cola" Used to Clean Feeding Tube!
DAY SIX - POST TRANSPLANT - December 10, 2013, 7:00 p.m. - December 10, 2013 - Today they did a bronchoscopy again. Yesterday there had been some crackling in her lungs, but today it was almost gurgling. They siphoned out a lot of liquid and said it was not infected. It is just that her edema has an affinity for the lungs. They are also giving her diuretics to get rid of the excess water retention.
Last night, we started the olive oil and it went great. No vomiting, no pain, nothing but smooth sailing. The wife of the other transplant patient we know said that the hospital put her husband on a feeding tube formula with extra virgin olive oil instead of soy oil as part of a study because in Europe they use olive oil.
Today I arrived and asked the nurse what the plan was for following the doctor's orders for giving Dew some food. The nurse told me that the speech pathologist had nixed it - said it was too dangerous. So back to square one... almost. But this week we have a doctor who is trying to deal with the reality of Dew's situation despite hospital procedures and protocols that are not conducive to dealing appropriately with a patient with environmental sensitivities. I ran into the great night nurse Dew had a few times previously, as he was looking after another patient, and he asked about Dew. I updated him and mentioned the really great doctor. He agreed with me. He said that doctor is fairly new here, and he really likes her approach. I told him what she had suggested and that it was overturned, but that I was hoping that if they would not give her food via mouth because of the tracheotomy, that at least they would give her real food via the feeding tube. He offered to try to track down the doctor or dietician to see if something could be done.
The dietician arrived and asked me what I thought we could give Dew. I said, I could use the Vitamix to liquefy any food she thought would be a good idea. She didn't have any ideas. So I suggested to start with for the first time that I could make broccoli soup. It is just broccoli blanched and then pureed with some of the cooking water. She said broccoli doesn't have enough calories and it has too much fibre. She said that the drugs Dew is on slow the digestive tract and the broccoli might just sit in her digestive tract. Besides, they are giving her senna and suppositories for constipation, so better to avoid fibre.
The dietician said that she needs calories and protein. So I suggested that if she wanted protein I could liquefy chicken. She said it would be too thick to go through feeding tube. I said I could use whatever food she wanted and dilute it as much as needed to get through the feeding tube. I suggested some almond milk as it does have some protein. She said it does not have very many calories. Besides, she said that they were already giving Dew intravenous liquids and didn't want to give her too much volume of liquid. I said that we could give her less liquids by IV and give her more via the feeding tube. She said, "No, because 100% of the IV fluid is absorbed and not 100% of the food liquid would be absorbed, so we can't be sure of exactly how much liquid she is getting." I said that after 2 1/2 weeks of not eating, and just vomiting the TPN each time, it seemed like it would be important to get some food into her.
So we started again. The dietician said whatever we give Dew has to be balanced with the right mix of carbohydrates, protein and fat. I said that we could mix whatever she wanted to get the right proportions. She didn't have any ideas. I suggested that I could make something up one time and something else for the next and it would balance out. People normally eat that way. She was pretty insistent that it be perfectly balanced as soon as we gave her anything. I said that something rather than nothing would be a good place to start. That did not move things forward. She was still worried that any food would block the feeding tube and said that they would have to put in a bigger feeding tube (probably the one Dew ripped out of her nose the other day). But a bigger feeding tube entailed some additional risks.
She asked where I would use the Vitamix to liquefy the food - at home and bring it to the hospital? - or in the hospital? I said, "Where ever you would like me to." She said it really could not be done in ICU and probably would be best NOT done in the hospital. So I said I could do it at the apartment. She agreed that if I did that that I could bring the food in cold ,so it would probably be safe enough, but then we could not feed it to Dew cold. So there would be a problem getting it to the right temperature - about room temperature to give to her.
She said in any case that if we were to liquefy foods, they would need to be so diluted that she would not be getting enough calories, protein and fat because once diluted to go through the feeding tube they could only give her a litre or so and that would not be very much calories, and protein.
She did agree we could continue to give the fats through the feeding tube separately. Yesterday she wanted to start with the extra virgin olive oil in an unopened bottle, so I got that and we were going to do flax oil today. (That went well.) I said if she was getting SOME food, even if it was not enough, it would be better that none at all, which is the current situation.
In desperation I reverted to powders again. Our doctor had suggested an FDA approved amino acid mix which was meant for feeding tubes, but the dietician had rejected it last week because it was only protein. Our doctor said it would need to be mixed with fats and tolerated carbohydrates, but dietician was worried that the starches would swell. I said that the carbs could be pre-mixed and sit in fridge to swell, then diluted with more water if needed, so they could go through the feeding tube. But she would not consider that last week.
She was a bit more open to our doctor's suggestion for artificial powdered formula this week than last week. However, it will take days to order the amino acids our doctor suggested and get that delivered. When I bought the flax oil today, I'd seen some kind of powdered food at the health food store, but didn't look closely at it. Will have to go back to the suggestions you all gave me last week, that I could not follow up on since there was a stone wall. But now that there is a doctor who seems to think it might be better to get some nutrition into Dew rather than none, there is a crack in that stone wall and I am working to create an opening. Really need to get a chance to speak with that doctor again! But if some of those suggestions could be obtained locally, and not have to be mailed, maybe I could get Dew onto something tomorrow.
Near the end of the conversation, Dew sort of came to a bit. She had been sitting in the chair for hours and too drowsy to remember to peddle the non-resistance little bike. But she wanted to write something. She wrote that when they gave her the "hot coke" last night through the feeding tube it had hurt her chest. I did not understand but the nurse explained that they give the patients Coca Cola to clean the feeding tubes because it does a great job! I was astounded! I asked, "So you can't give her food, but you can give her Coke?!" The nurse was nice about it. She said that the doctors are aware that they do that to clean the tubes and it is not a lot of Coke. I pointed out that the high fructose sweeteners that they use as a sweetener usually is corn-based. She agreed that in Dew's case they shouldn't do it again because of the corn allergy.
At this point, the dietician said she was tiring Dew too much and we could discuss it again later - so nothing resolved and more delays.
Dew completely "out of it"
DAY FIVE - POST TRANSPLANT - December 9, 2013, 7:00 p.m. - Yesterday, Dew was completely out of it. At one point, she came to briefly and wanted to ask as question, but as usual, I have difficulty reading her lips, (although some nurses can do better than me sometimes.) The nurse yesterday, couldn't read her lips either, so I asked Dew is what she was asking was important and I would get her the little white board.
She nodded yes, so I got the board as she was conking out again, but she took the marker and drew tiny squiggles. At that point, the nurse decided this was going nowhere fast and gave up. But I asked Dew to write bigger and more clearly (because she has been very articulate with the board throughout most of the time with the tracheotomy). She drew impressive squiggles all over the board and just conked out. I took the pen from her hand and she slept. So the nurse was right, with the drugs she was on, any form of lucidity was a non-starter. I thought of taking a picture of her squiggles to show you (and her when she is better), but still not solved microchip issue.
Today, she has been able to write rather illegibly, but lucidly. She has been asking what happened to her and I explained about the transplant (which she remembered) and the seizure which she did not, although nurses and I have told her about it repeatedly. I think she had got it now.
Today's doctor was really lovely and gracious. Instead of chasing me away to the very far off waiting room where you have to wait and then phone for permission to ask to be allowed in again, she INVITED me to join them. (Even a few of the nurses chase me away to the waiting room when they are doing handover in case I might hear something pertinent about Dew's condition, but most of the nurses are generally kind and let me stay, although they don't include me or generally let me hear what they are talking about).Â
Unfortunately, the intern responsible today was pretty insensitive. First he said that Dew had not gone into anaphylaxis and that she had only had a "little rash" and that I was misusing the term. When I corrected him that both doctor and nurse on duty that day had clearly stated that Dew had had full blown anaphylaxis (a few days AFTER having the rash which SHOULD have been a warning sign!) he still disagreed. I don't know what is more worrisome - the thought that perhaps the doctor and nurse that day had neglected to record what happened (less likely) or that the resident had not bothered to read Dew's chart and was just winging it with arrogance, assuming I was too stupid to know what anaphylaxis is.Â
Since Dew has consistently vomited whatever TPN they have given her, I asked if they were going to try TPN the normal way instead, through IV, although that would not serve the purpose of engaging her gut as they want to do. It would, however, get some nutrition into her after more than 2 weeks of not eating. I also asked if the CT scan had indicated any blockage of the intestines. The nice doctor said there was no blockage, and carefully checked Dew to be sure. She said that going to IV delivery of the TPN was a possibility, but not the immediate plan.
Instead, she was suggesting as the immediate plan that they give Dew some real food of the safe kind that she normally eats, (despite the tracheotomy!) and it seems, to allow me to bring her in safe foods that she tolerates. This, after a million doctors and nurses had said it was not possible to give Dew food with the tracheotomy in place. But if it is indeed possible, what a sensible, common sense solution! This doctor is capable of rational thought, not just adherence to a rut, one size fits all approach. The doctor said it would not be possible to get her full nutrition that way, as likely Dew would only get a few nibbles, but it would be better than nothing until the feeding tube comes out, "given that Dew is so very sensitive".Â
They have no idea that compared with people with very severe environmental sensitivities, that Dew and I are very moderate cases (or at least until the hospital created a long term anaphylatic sensitivity in Dew where none previously existed.) But at least they are finally starting to get it that we do have environmental sensitivities and that that has real consequences and needs to be taken into consideration. If only we had been at this point with them in April 2013, it would have saved both Dew and I massive suffering. Dew might well not have ended up in hospital, pre-transplant, and almost certainly would not have needed so much invasive treatment to keep her alive.Â
We have never considered ourselves "very sensitive" in comparison with many other people with severe environmental sensitivities. The really severe cases have to avoid hospitals completely, even if they are dying. For example, the police tried to force a woman to go to hospital when she was dying on an outside porch since she could not tolerate the indoor air in any place available, and the rural community who had given her refuge and were helping her, had to intervene to stop the police and let her die naturally, instead of being subjected to painful treatments that would have made her death much more difficult and horrifying. I also know of many cases where people with severe sensitivities have had no access to medical care since there were no accessible hospitals or doctor's offices that would not send the person into seizures or worse. In one case, for example, I intervened and asked a doctor to go to see a woman in her home since she had an infection, was projectile vomiting and had seizures that severely damaged her back after having gone into a hospital when her son was in an accident that he was not expected to survive, and then she suffered the consequences. The doctor lived nearby, but was reluctant, and although he went, he just told her to come and see him "when she got better"! So she never did get any medical treatment, tests, or help.
The nice doctor today also asked the dietician about adding in oil for Dew. The dietician and I had discussed this last week. I had told the dietician that our doctor does not want Dew to have soy, so soy oil would not be a good choice (the only oil that the TPN comes with). While the dietican has always been a nice person, she was previously not willing to budge and her lack of willingness to innovate slightly to deal with a problem was, in large part, the reason that they pushed Dew into anaphylaxis despite the warning signs progressing. NOW, having been consistently wrong, and having consistently ignored my warnings, she is finally realizing that it might be a good idea to listen to someone who has observed and managed Dew's allergies for decades and who has discussed them with Dew's doctor of environmental sensitivities, who is an expert in the field. Dietician is still worried that if we give Dew another oil that is not in a commercial solution that it will adhere to sides of feeding tube, but that seems an innocuous problem in the grand scheme of things. The dietician is now willing to try extra virgin olive oil (EVOO) and flax oil as a substitute for soy oil in order to get some calories into Dew. Dietician will have nurse flush feeding tube line afterwards with water to try to clean out tubes as much as possible. She wants to alternate days (first olive oil and then flax) and wanted me to bring in an unopened bottle of each as the EVOO that the hospital has is in minimum 4 litre bottles. So now we are talking about collaborating and the best way forward, so it is so much easier to support and work with them.Â
Dietitian said we could wait until I come in to hospital tomorrow, but I rushed out immediately to get the unopened bottle of Extra virgin olive oil that they requested, so they could start today and Dew could get a few calories now, rather than 24 hours later after she has been without food for more than 2 weeks. As for myself, I would not have recommended pure oil as the first food to consider, but if that is what they want, it is a step forward so I have no problem supporting it and seeing whether she keeps it down. (She has so far). If they allow her liquid food down her throat - need to find that out - I could make her a blended soup with Vitamix which might be an easier to get accessible nutrition into her than solid food around the ventilator. The really great night nurse and I had discussed me making a very thin solution of blended food with the VItamix to deliver down the feeding tube (because we thought it was off limits to try down her throat) after she first had the tracheotomy, but at the time, the hospital refused to try giving her food that she was not allergic to.Â
The intern then went on to say that since Dew was a transplant patient and had had "only one" grand mal seizure that there was no need to chase after trying to figure out what had caused it! I objected and said that I thought it was important to understand what had caused the seizure in order to try to prevent a repeat. I said that the doctor and nurse on the weekend had said that it could be the cyclosporin and had said that the weekday team of ICU doctors would be discussing today about changing her antirejection medications or adjusting them. The gracious doctor then tried to smooth that over, saying that the intern meant to say there was no need to do a spinal puncture at this stage. She assured me that the ICU team would be discussing with the transplant team a change in Dew's anti-rejection meds. In fact, she kept her word. Late this evening, one of the same doctors who was present at the rounds came in and told Dew that they were changing her to another anti-rejection medication that did not carry the same risk of seizures. I don't know the details of how effective this one is -- something to research - or its pros and cons. But at least there has been some action to reduce the risk of a second seizure at the moment.
Dew has also been complaining of blurry vision for several days before the transplant and since. The team discussed it today. The nurse and team were not aware that Dew has been complaining about her vision before today, but I have heard her complain several times. They did an informal test, and established that it is one eye responsible, not both. This, the kind doctor took seriously. They did an informal test on the spot, and established that it is one eye responsible, not both. This afternoon, lo and behold, a very nice resident eye doctor showed up to check Dew's eyes. He even asked me why I was wearing a mask, and when I said because Dew is immuno-compromised and it is winter, so one can be incubating something without even knowing it, he volunteered to wear a mask too (the first health professional staff to do so, except during the time when Dew was on the BPAP machine, and the purpose of the masks then was to protect the staff, not the patient.) The eye doctor said her close up vision is better than average. He could not check her long term vision without moving her from ICU. However, he found that one of her eyes is protruding forward. As soon as he mentioned it, I saw it too. Her face is so distorted from the swelling that, although I know her face is very off, I had not analyzed it beyond putting it down to the anaphylaxis and edema swelling. I had noticed one eye was strange, but assumed it was the swelling AROUND the eye that was the problem, instead of observing that it is the position of the eye itself.
I asked him if there was a possibility that the eye protruding could be connected in some way to the seizure. He said it might be, but was not sure as they don't yet know what is causing either.Â
Dew's urine was looking pretty normal this morning. This afternoon, after resuming the other anti-rejection drug, its colour is more orange with creatinine, but not as dreadful looking as when she was on cyclosporin.
Dew was able to sit up for about 4 hours today (but not conscious), and she was off the ventilator and on just the trach mask more than 7 1/2 hours today. Her blood gases and her oxygen saturation rates are good, even with lower levels of ventilator support (I THINK they said 30% now, but am not 100% certain). Anyway, ventilator support is decreasing and breathing on her own is increasing. So that progress is positive.
Dew Ripped Out Feeding Tube
DAY FOUR - POST TRANSPLANT - December 8, 2013, 11:20 p.m. - Just as I was about to leave ICU tonight, Dew ripped the feeding tube out of her nose right from her stomach - yards of it. Wanted to also rip out the tracheotomy. The new night nurse tonight was very nice about it. She says her Mom was in ICU and she was not crazy, but the drugs do strange things to people, so she was very understanding.
This behaviour is very common among transplant patients and probably others in ICU too. One of the people who had his transplant about 3-1/2 weeks ago, did the same thing, I think on the very first night post transplant. His doctor was not so understanding.
Unfortunately, it meant that the nurse had to put another feeding tube down Dew's throat. The nurse said maybe it was for the best, as this one she put down through Dew's mouth instead of nose, and it is a much thinner one. The previous CT scan this afternoon had shown Dew's chronic sinus infection was pretty active despite all the antibiotics. It is chronic because she has a hole in her septum caused by the oxygen company refusing to let her have more than one oxygen pendant every 3 weeks, and the resulting infection caused the cartilege to be eaten away. Now the hole harbors bacteria and it is a vicious circle. So the nurse said that the feeding tube would only have aggravated that.
Nonetheless, it is horrible to watch Dew gagging, choking and vomiting during the procedure even though she was still very sedated. And even worse, then they had to do ANOTHER 2 x-rays to make sure the tube was properly positioned.
There are, I think, at least 150 ICU nurses or more on rotation in this particular ICU at TGH. When you started recognizing many of them every day on other stations, and are able to greet them by name, you know your family member is really seriously ill.
Grand Mal Seizure - Possible Reaction to Anti-Rejection Med
DAY FOUR - POST TRANSPLANT - December 8, 2013, 9:00 p.m. - Dew still sleeping from sedatives and anti-seizure drugs. Coming to when spoken to, but immediately dropping back asleep.
One of you asked if seizures post transplant is common. No, it is not, but apparently it is a possible side effect of cyclosporin. Dew is much more sensitive to drugs than the average person due to her environmental sensitivities, and lung transplants require massive amounts of many drugs.
It is not sure that the seizure was the result of cyclosporin. That is only one hypothesis at this time, but is the leading suspect right now.
DAY FOUR - POST TRANSPLANT - December 8, 2013, 6:00 p.m. - Dew had a Grand Mal seizure this afternoon and is still sedated.
Last night and this morning began well enough. Last night she was on the oxygen mask over the tracheotomy for 5 hours and again this morning and it went well.
They did restart the TPN again and again she vomited it all up.
This afternoon they got her to stand and then sit down in the chair. That seemed to be goingÂ well when the nurse noticed that Dew was staring at the ceiling and licking her lips. They tried to look to see what she was looking at but there was nothing. She did not respond when they called her name.
So the nurse immediately called others to help get Dew on the hoist and into bed where she had the Grand Mal seizure. The nurse said it was fortunate they got her to bed first and that it happened while they were in the room with her. The doctor and nurse said she seizured for about 5 minutes and then stopped it with drugs.Â
They did a CT scan and didn't find anything (blood clots, etc). The doctor said her electrolytes are fine and her oxygen saturation rates continue to be good.
Both nurse and doctor said that they had temporarily halted her cyclosporin (anti-rejection medication) yesterday because her kidneys were being impaired by it and her urine was a deep dark orange yesterday from the creatinine.
I remember asking about it and the nurse had just said it was because her creatinine was high. I asked if she was going into kidney failure from the cyclosporin and she said it was normal for this to happen post transplant, and nothing to worry about, but did not tell me that then that they had stopped the cyclosporin because of it.
The seizure began after they restarted the cyclosporin today and two nurses and the doctor all suspect that the seizure was caused by the cyclosporin - which is known to cause seizures as a side effect.
Tomorrow they will re-evaluate her anti-rejection medications and decide what to do - probably change the anti-rejection medication, although they prefer to use cyclosporin.
Dew has been complaining of a pain in her upper chest for several days, and the nurses had been dismissing it, but when they got her up to get in the chair this afternoon just before the seizure, she clutched that spot and was crying, "OW, OW, OW" when they were trying to get her into the chair.
That is one of the problems of having the nurse constantly changing. Today's nurse did not know that Dew had been complaining of the pain in the chest for several days, but I did because I've been sitting here listening to her mention it. They told her it was probably just a muscle pain and to use the paid medications. I tried to ask them to try to figure out why she is getting that pain as one does not get pain for no reason, but they didn't seem interested in trying to figure it out.
But the CT scan did not indicate any blood clot in the brain so they don't think that was the cause of the seizure.
The sweet nurse from the first day post-transplant came by again just to be nice and said that she was very scared when it happened and that they had had "about 40 people" in the room trying to deal with it. She said it was a blessing that I did not witness it.
Today's nurse said that Dew's lung was a bit tight as it is a bit too big for her and there seemed to be a narrowing of the blood vessels near the bottom where is it tight and a bit folded. She said when they did the bronchoscopy on Friday they found some bleeding, but not a lot and they did not see any clots at that time (They didn't mention the bleeding to us at the time, even when Alison pressed them after they said that the bronchoscopy found no problems, asking if there was anything else we should know.)
doing well on trach mask
DAY THREE - POST TRANSPLANT - December 7, 2013, 7:15 p.m. - The nurse had come in and Dew came to for a second. Motioned to me that she wanted to hear your facebook messages. I turned around and picked up computer and got up FB page and then she was asleep again. I asked her if she still wanted to hear them and she motioned "no" as she fell unconscious again. Your messages are obviously important enough to her even when unconscious, but I will have to read them to her when she is somewhat better.
She has been on trach mask now for 3 1/2 hours and they are aiming for 5 hours again tonight. Good news is that her blood gas test results are consistently BETTER on the trach mask than on the ventilator, which seems to have surprised the nurses / Respirology technician in a good way.
DAY THREE - POST TRANSPLANT - December 7, 2013, 6:00 p.m. - Dew sat pretty unconscious in the chair for 4 hours today and then they hoisted her back to bed so she can sleep properly without falling forward and waking, etc. She is now on the tracheotomy oxygen mask again and off the ventilator. I think they are planning to go for a least 5 hours again. It has been nearly 2 hours right now and she is doing well despite being pretty sound asleep for the whole time. She does become semi-conscious long enough to push the pain med button from time to time, when, I suspect, the pain wakes her up. The pain med is no longer morphine but another narcotic.
DAY THREE - POST TRANSPLANT - December 7, 2013, 3:45 p.m. - They have Dew sitting up in a chair today, but she is not really fully conscious. The nurse said Dew wanted to get into the chair today, but she is pretty out of it, probably in large part for the narcotic pain medications as well as exhaustion. Dew asked me to read her text messages when I arrived, but I only got about the first 4 words out of my mouth when she waved me off, and conked out again. However, sitting up and sleeping is difficult and when she starts to fall over, it wakes her momentarily.
They did the blood washing again this morning. I think tomorrow they will skip it and then do it again the next day. They have reduced the pressure setting for the ventilator so she can initiate her own breaths more while still on the ventilator. They have not yet put her on the tracheotomy mask today.
Her white blood cell count is declining more slowly now, but while still high, is going in the right direction indicating she does not have infections which are worsening. It is now down to 18. So she is healing and her infections and potential infections are being kept under control. Of course she is still on IV antibiotics and antifungals.
The swelling from her anaphylatic reaction has gone down somewhat, but her face is still puffy from edema. I took a picture but can't post it now as I lost the microcard for the camera on the night they were taking her down for the transplant. So will have to see if I have a cord to go from the camera's own tiny internal memory to computer. When Alison was here on Thursday, she took the pics with her cell phone and was able to use her phone to upload to FB, which I can't do.
My sister Alison asked if she could bring Dew's grandparents to see her tomorrow, but when I asked Dew at a moment when her eyes flickered open, she just shook her head "no" and feel asleep again.
So no visitors as of yet. Hopefully by next weekend.
Thanks to everyone for their prayers, healing thoughts, messages and support!
Off Ventilator for 5 Hours Today
DAY TWO - POST TRANSPLANT - December 6, 2013, 10:00 p.m. - Dew was off the ventilator with just an oxygen mask over the tracheotomy for 5 hours today. Most of that time she was pretty out of it or unconscious, but that means that her body is starting to be able to breathe on its own, even when she is not conscious, which is a great step forward. They were planning to try another 5 hours later today to make a total of 10 hours, but other things intervened.
They were worried that she had fluid in one lung so did a bronchoscopy on her. They didn't find any mucus or infection and think it is just edema. Her whole body is swollen (although her face is starting to come down from the anaphylaxis - maybe about 1/2 way as of today).
They were going to do her "physio" getting her to sit in the chair again today but when they arrived to do that she was having the bronchoscopy, so she did not do any "physio" today. After being sedated for the bronchoscopy and then the effect of the pain narcotics conking her out, she barely opened her eyes today. Just as well, as it was an escape from the nausea, pain and exhaustion.
The nurses are still saying she is making good progress. They are hoping she will be weaned off the ventilator in a few days, and then she can also get rid of the feeding tube shortly after that and be able to eat safer food again. Also then she can have a shower after 2 months without being able to have one because the hospital did not have oxygen in the shower rooms and the portables were insufficient to keep her alive. It really bothered her at first not being able to bathe, but at this point, it is the least of her worries. Nonetheless, being able to have a shower again will be a major milestone and a very welcome one for her when she gets to the point where she is well enough that she can appreciate it again.
They are going to do the blood washing again tomorrow to deal further with her antibodies to reduce the potential for rejection.
Nauseated and in Pain
DAY TWO - POST TRANSPLANT - December 6, 2013, 11:15 a.m. - Overnight they started the Total Parental Nutrition (TPN) via the gut rather than intravenously in order to engage her gut. It was just a tiny drip and it does have dextrose so we didn't know if she would tolerate it. It made her nauseous and this morning she vomited all that they had given her overnight.
It is not clear to me whether she is nauseated and vomiting from the reintroduction of any form of food, or whether her body is rejecting the dextrose. She remains very nauseated (she indicated a 6/10) and could barely open her eyes for a few seconds when we arrived. She is just lying very still and sleeping most of the time. She is in a lot of pain - doesn't want to use the narcotic button too much, but she is having to use it to bring down the pain. Right now she indicates that the pain is about a 5/10. They wanted to give her anti-nausea medication, but she mouthed that she only wants that at night - I think because it may conk her out.
They took her off the ventilator again and put the oxygen mask over her tracheotomy again this morning to continue the process of weaning her off the ventilator. She is doing well again with that and it has been nearly 2 hours. She is managing being off the ventilator while she is basically sleeping and not consciously breathing. Last night it was just over 2 1/2 hours, but much of that time she was a bit more alert.
Her face remains very swollen, but a bit less than immediately after the anaphylaxis and immediately after the surgery. Her feet and hands, and I think most of her, but especially her feet, are very swollen with fluid build-up.
They are doing the "blood washing" again right now - removing all her own blood, returning her red blood cells to her but discarding her plasma and replacing it with blood bank plasma.
DAY ONE - POST TRANSPLANT - December 5, 2013, 8:30 p.m. - They finally put Dew back on the ventilator after more than 2 1/2 hours. They were in the middle of shift change, but the night nurse agreed to page the respiratory therapist and she came as Dew really wanted to have a break from breathing on her own.
She is on the ventilator at 40% with excellent saturation and lung volumes. So her support is decreasing and she is doing well. The day nurse left at the end of her shift and before leaving she came and told Dew that Dew was her "star pupil". She has been so sweet to Dew today even when Dew was finding everything so overwhelming.
Earlier today my sister Alison mentioned that Nelson Mandala had died and although Dew was pretty out of it, she overheard and asked if he had died today.
Off Ventilator for 2 hours - Doing Amazingly Well
DAY ONE - POST TRANSPLANT - December 5, 2013, 7:30 p.m. - Well, 3 nurses have come by to see Dew today, one that she had the day she was told she would have the transplant that day. All 3 have said how well she is doing. (Not sure if our nurse put them up to it to encourage her, or whether our nurse's "bragging" about Dew is bringing in the crowds!) But they all seemed to indicate that she was doing great and two of them told her how proud they were that she is doing so well. One said it was "refreshing" to see someone come along this fast so soon.
Dew has now been off the ventilator for more than 2 hours. She wants to go back on ventilator now as she is tired, but has to wait until the respiratory technician returns to do it. Nurses are in the handover phase to next 12 hour shift so have not called the technician yet.
Dew Sat Up for 4 Hours Today
DAY ONE - POST TRANSPLANT - December 5, 2013 - 6:30 p.m. - Dew sat up for 4 hours today (not her choice). They are trying to rebuild her "core strength". The spiritual counsellor came by and stayed for about a 1/2 hour to talk with her. She had been asking for that kind of counselling support since she entered hospital on October 15 and I went down for the count (a month) with pneumonia and coughing up blood. Apparently the message was never passed along to him. He came of his own accord today and was very nice and will try to help.
Early this evening, they took Dew off the ventilator support and just put her on oxygen mask over the trach tube. The doctor wanted to see if she could breathe without the ventilator breathing for her for just a few minutes. The respiratory technician said she would stay in the room and put her back on ventilator support to breathe for her if she needed it. However, she has done so well that the technician has left.
The nurse said it was amazing that this is only the day after surgery and she is breathing on her own. She said very few people have done that. And Dew was on ventilator and ECMO and nearly died before going through surgery, not just came from home on oxygen through nasal prongs before their transplant. The nurse said,"We should march you through ICU and show everyone how it should be done post-surgery just like Dew!" That got a smile from Dew, even though this has probably been the worst day in her life. Dew has now been off the ventilator for an hour and they are going to see if she can go for two hours total tonight. If she can, it bodes well for weaning her off the ventilator rapidly and getting the feeding tube out and slowly reintroducing food.
This nurse is so sweet. She calls Dew "Baby Girl" and tells her how proud she is of Dew doing so well. She came in just now and said that Dew's chest tubes are not draining that much, which she says means Dew is healing well with clean cuts. She said she is going around the ICU "bragging about Dew" and saying to people, "Go see how well she is doing the very next day after the transplant!".
I think Dew is doing better than expected, but also I think this nurse really wants to encourage Dew and keep up her spirits too, although she did say to Dew earlier today that she was just telling her the truth about how well she is doing and that she would tell her the truth.
Dew still feels like she was hit by a bus, but her vitals are doing well in comparison with what is expected of someone who has just had such a huge difficult surgery, especially after being on the brink of death pre-transplant.
Attempts to Reduce Ventilator Use
DAY ONE - POST TRANSPLANT - December 5, 2013 - 3:00 p.m. - They tried to reduce the ventilator so that it only came on when needed and let her breath herself, but the alarms were going off constantly as every time she drowsed off (almost every minute) she would not breath and the machine would alarm. So they moved her back onto ventilator support until she is a bit stronger and can breath on her own.
The surgeon just came in and said she was very lucky. He said over the previous few days they didn't know if she would make it. He said any time anyone is on ECMO it is a very dicy situation and she was on it for a while.
She asked about the surgery (by mouthing the word "Surgery"). The surgeon said it was very simple: they took out her old lungs and put in new ones. She rolled her eyes and i said I think she wants some details. She asked about size. He said that the lungs were a good match for size in terms of her height, but were a very tight fit because her own lungs had shrunk and shriveled over time. He said her chest would expand again to fit the new lungs over time. I asked if they did a biopsy of her old lung and he said, "Yes". I asked if they had a diagnosis and he said it takes weeks of tests before we will have a diagnosis of what her disease is.
Just now they put Dew on a pain pump to control herself. Like everything today, she just started to cry. Since she can't express herself she gets frustrated and scared and is already in pain and is scared things will be done to hurt her more. The nurse was very good with her and can read lips a lot better than me. She explained that Dew can control the pain herself and doesn't have to use the medication unless she wants to. So I think that resolved.
Dew starting physio
DAY ONE - POST TRANSPLANT - December 5, 2013 - Dew has been in distress since we arrived today, and I suspect was in distress as soon as she woke up. But the "physio" - getting her into the chair - really jacked up her distress and she really resisted in fear. Her oxygen saturation levels remained pretty good through it all though.
Well, that took about 15 minutes with Dew in deep distress and she is still in a lot of distress. All through this ordeal of the past few months, she has not complained much or resisted. But she really resisted trying to sit up; she got dizzy and did not think she could stand even for the microsecond to collapse into the chair. She was afraid of falling. Anyway, the physio persisted and got her into the chair. But how they are going to get her from chair into bed, I do not know. At least the chair was lower than the bed so it was partly falling into the chair, but getting her UP to the bed is going to be far more challenging.
The nurse was dealing with all the lines and tubes and connections she is attached to. In addition to a lot of other lines she already had pre-transplant, she now has 3 very large tubes draining an incredible amount of red fluid from her lungs and chest.
Right now however, they are trying to get her to peddle the non-resistance stationary "bike" to get her legs moving. They are trying for one minute today, maybe two. Although she remains in distress, she mouthed that she would try for 10 minutes. Her legs are shaking terribly in the first minute, but she wants to try to rebuild a bit. She always found the non-resistance "bike" so much easier than trying to sit down as the bike never desaturated her oxygen the way sitting down did. However, today the sitting down did not desaturate her too much, although it was grueling for her.
The physio just said I have misunderstood. They are not taking her off the ventilator any time soon. They might get her off it for brief periods to slowly acclimatize her to breathing on her own. But it looks like it might be days before they get her off the ventilator and close up the tracheotomy.
Dew in recovery
December 4, 2013 - 6:00 p.m. - Dew is on a ventilator at 70 percent with no ECMO anymore. Her face is still double its normal size from anaphylasis... she really doesn't look like herself. Her white blood count is massively high (55) perhaps from ECMO infection??
Dew Has Her New Lungs
December 4, 2013, 3:30 p.m. - Dew got out of surgery at about 2:30 pm on Wednesday (today) and the doctor came out and spoke with Alison, my sister, about 2:45. I had JUST gone to the car to get water and food and missed the doctor by a minute or so.
He said she would have lived only a very few days more if she had not had the surgery. The ECMO connection was infected. He said she is not out of the woods yet. He said that when her blood was restarted in the new lungs, the surge can cause damage in the new lungs and they won't be sure that there was not damage for several hours.
Right now she is sedated and will continue to be sedated until they are sure that they will not have to do anything more to her today. Once they are sure she is responding well, they will reduce the sedation. We (my sister and I) can not go in and see her until about 3:30 pm. and then only if she seems to be stable. But she will not be conscious.
She will not be able to have visitors for several days, depending on how things go. I will post when it is OK for visitors to start coming. I have not posted an OK over the past week, because Dew's condition was so fragile and she was having crisis after crisis. Please remember that once she can have visitors she will be severely immunocompromised and while she was extremely at risk from colds and flus before, now the slightest infection will be even more lifethreatening. So we will have to be even more careful not to expose her to even the most minor illnesses. Over time they will start to reduce the level of immune suppression, but she will be immune compromised for as long as she lives.
Thank-you all so much for your loving thoughts, prayers, messages and caring that you have given in support of Dew and I all through this nightmare, both as visitors and in messages, posting, phone calls and cards. It has really made a difference in Dew's spirit and has contributed to her being able to fight to stay alive this long. It is for her connection to all of you whom she loves, her friends and her family, that life has been worth the struggle to survive to this point. She has also been so touched by the caring of people who did not previously know her, but who have cared enough to help us in so many ways, and to post messages of support as well. Thank-you to everyone, so very much. I will continue to keep updating you as best I can.Â
Dew is in the Process of Receiving her Double-Lung Transplant
December 4, 2013, 6:00 a.m. - Transplant was confirmed this morning at 4:15 am. Dew was taken to operating room at 5:15 a.m. Operation will take minimum of 6-8 hours, but could take 10 or more hours. It is a double lung transplant. She still has pneumonia but those lungs are coming out. She still is having the anaphylaxis swelling, which may go on for some days. So it is likely to be afternoon before she is out of the operation and will not be conscious.
Possible Lung Transplant Tonight at 1:00 a.m. - fingers crossed
December 3, 2013, 6:00 p.m. - The nurse has said that the transplant team has a set of donor lungs that MIGHT work for Dew. They won't know until around 11 pm. Then if the lungs are viable, she would have the transplant surgery at 1 am or later.
They have already given her the first dose of cyclosporin, the antirejection drug.Â
Dew says to tell everyone that if the surgery goes forward, that she will not be able to receive visitors for some time (we don't know exactly how long, but I will post when she is well enough to have visitors.
Here is a picture of her right now, pre-transplant and with the swelling from the anaphylaxis. Her arms and legs are so skinny and her face looks obese from the drugs and the anaphylalaxis.
She is still not over the pneumonia so will continue antibiotics, but they said that the infection is in her lungs and those are coming out, so they will proceed if the lungs are viable. I am surprised that they don't think she needs to recover from the trauma of the anaphylaxis before undertaking the trauma of such a major surgery.
There is about a 50-50% chance of this being what they call a "dress rehearsal". In other words, that the transplant won't happen. but if it does not happen tonight, it should be soon as she is at the top of the priority list, with only a few others right now.
For more of Dew's story...
Anaphylactic reaction to corn-based formula
December 3, 2013 - Dr. Bell, CEO of UHN, came by and spoke briefly with Dew. Of course she could not speak. Leslirae intervened and told him that there were issues in UHN with lack of accommodation of people disabled by environmental sensitivities, including this specific incident of anaphylaxis. There should have been a formula which does not contain the major allergens. Dew is not the first patient with this problem. The dietitian argued that Dew was the only one and that corn was not really a major allergen!!!Â
Anyway Dr. Bell has offered to have Leslirae e-mail him with regard to increasing accessibility for people disabled by environmental sensitivities. He seemed to recognize her name so I think he was previously briefed. Not sure if he will take the issue of improving access to hospital care for people disabled by environmental sensitivities seriously, but can try.
December 3, 2013 - Dew had the inevitable anaphylatic reaction to the corn that the hospital is giving her because they don't have any feeding tube formula that does not contain major allergens. They increased the quantity of formula this morning and her face blew up and her throat swelled. It did not close because of the ventilator tube.
One eye is completely swollen shut and her face and neck are enormous. Her corn allergy which has just been something to avoid is now life-threatening and corn is in everything! She will now have to have an epi pen and will have to constantly be on guard for the rest of her life against the slightest cross contamination with corn.Â
They have determined the bacteria responsible for her pneumonia and are now testing (with cultures) which antibiotic would be the best one to switch to. However, she is responding to the broader spectrum IV antibiotics she is currently on.
Ventilator-Associated Hospital-Acquired Pneumonia
December 2 , 2013 - Dew has ventilator-associated hospital-acquired pneumonia. A surgeon came in last night and told Dew she had septic shock. However, today the nurse said she might be "septic" but it was not "septic shock" because only her lungs are affected and not other organs.
She has been responding to the IV antibiotics. They were able to reduce the ventilator support partially. Dew started to feel slightly better early this evening. She has been coughing up blood for several days and yesterday was the worst. Her ventilator tube is full of blood. She is still coughing up blood, but less today than yesterday.
Dew is much worse today
December 1, 2013 - Right now Dew is sleeping and she has not allowed the nurses to turn her as she is just too out of it to be moved.
When Leslirae arrived to visit Dew today, the nice nurse who had brought Dew the movies, and which, yesterday and the day before Dew had been able to watch, gave me a full briefing on her condition - the first time anyone here at TGH has given me a full briefing.Â
In the earlyÂ morning hours, Dew desaturated badly, was in rough shape with a temperature and was freezing. She is now on 100% of the ventilator capacity (so they can not increase that any further) and they also jacked ECMO way up in order to get her out of the dangerously low oxygen levels. She is coughing up really nasty stuff. They did a bronchoscopy and she is on a lot of drugs which are contributing to her being out of it right now. They did sputum, urine, and blood cultures and immediately put her on two intravenous antibiotics, one of which is for resistant bacteria. When the cultures come back, they will change the antibiotics. I think they did the blood culture since she is on massive amounts of blood thinners to prevent clots with ECMO, and bleeding in a lot of places (her arms are just black and purple), so that could allow infections easier access into her bloodstream, which normally would be fairly difficult.Â
The nurse was not 100% certain yet, but the usual thing in this kind of situation is to take her off the transplant list temporarily as they do not dare do a transplant when she has a full blown infection. That is because the transplant involves massive amounts of immune suppressants in order to have the patient not immediately reject the donor organ.
So I am almost certain she is off the transplant list as of now and we can only hope they can control whatever this infection is soon as there is not much they can do to increase her oxygen now if the infection gets any worse. There are pamphlets in the waiting room on ventilator associated pneumonia, so it is possible that that may be what she has.
Her platelets and her hemoglobin are low, so they are transfusing her with those now. They have stopped the feedings.
I didn't think she could get much worse than earlier this week, and yesterday she seemed quite stable, but there we are.
With help, Dew is standing
November 30, 2013 - Dew did not get much sleep last night. Not sure why, as it is tiring for her to have to write everything out that she wants to say - so communication tends to be pretty basic and confined to immediate needs to a large extent - not idle conversation!
The weekend nurse said that although the physiotherapy is not done on the weekends for patients on ECMO, she wanted to get Dew standing and doing the same exercises as yesterday. So today there were 5 nurses in here helping her get up from the bed, had her stand and raising her feet slightly off the floor alternatively three or four times with rests, and do a couple of micro squats (a couple of cms!) today. Then down into the chair. That is the most challenging part of the physio - sitting down from standing. It always desaturates Dew's oxygen very badly. So today, Dew asked the nurses to help lower her into the chair instead of her trying to sit down. It helped. She still desaturated, but not as badly and it did not take forever for her oxygen saturation levels to recover.
Afterwards Dew desperately wanted to sleep but it is not easy to get her into the chair and back into bed so nurses wanted to keep her in the chair. They consider it the bulk of the physiotherapy for Dew - in order to strengthen her abdominal muscles by sitting in a chair for several hours every day, so she can not sleep or rest now.
ECMO still a bit antsy, but more stable generally. Alarms are not going off all day - just intermittantly and repeatedly but usually the nurse can calm the ECMO down and it goes quiet again.
One of the things they found is that they need to keep Dew hydrated. Apparently, the Transplant Team likes to keep lung patients on the dry side because the lungs function better that way. ECMO does not though. So they are having to balance keeping Dew ever so slightly dehydrated and adding enough intravenous fluids to keep ECMO with enough fluid volume to function better.
November 29, 2013 - A kind nurse brought Dew some old movies on DVD to watch. She brought in a screen and DVD player into her room.
Right now there are 7 physiotherapists and nurses (5 physios and 2 nurses) trying to get Dew from her bed to a standing position. One is holding the ECMO connections so they do not dislodge. They have moved her from her ventilator to a portable ventilator. Others are holding other connections to machines. She is standing now. They have positioned the chair behind her and one is reading out her oxygen Sats.
They are having her lift her feet alternately, one then other, then rest for a while in standing position. After about 4 times, she is now going on toes briefly twice.
Now they have her sitting in the chair and we are waiting for her oxygen sats to recover. It is taking a long time to recover her oxygen sats to a good level - so far, maybe 10 minutes. They said she has done very well so far. Oxygen sats are slowly coming back to better levels after a big drop sitting down into the chair.
They brought a non-resistance tiny bike machine for her to try to peddle. They have given up on the bike and are leaving her to rest in chair for a while now. They will come back later in the day while she is still in the chair to try the peddling. The 4 steps and two standing on tip toes is all the physio for this morning.
Dew able to sit in a chair - still no food
November 28, 2013 - The hospital has not restarted the feeding formula (now basically day 9 without food or liquid nutrients aside from the one abortive attempt at the liquid tube feeding and the few bites several days ago). So at least they have avoided another allergic reaction.Â
The family's specialist from Ottawa came in to see Dew and made some suggestions about nutrients for the feeding tubes that would not be allergenic. However, although Leslirae was supposed to meet with her and left in time, she was confused and drove to Kitchener instead of TO - it appears her cognitive functioning is being impaired by the levels of pollution in the Toronto area.
Anyway, our doctor made some suggestions to Dew and will e-mail us tomorrow with other possibilities for the feeding tube liquid.
Dew had a somewhat better day today - they got her to sit in a chair for 3 1/2 hours. She was mostly alert, in a bit of pain, but medicated. She can't move on her own but her oxygen saturation was fairly good most of the day. The machines only set out alarms a few times a day instead of a few times a minute.
Plan for tomorrow is to get her to walk a few steps, if possible.
Dew is becoming an expert in pantomime. Her high school drama training at Canterbury is coming in handy. It is a bit like a constant game of charades all day. The nurses and Leslirae are having a crash course in reading lips. A friend brought a white board and low odour white board pens and Dew is writing instead of talking when the game of charades is not going well.
Tracheotomy, Ventilator and Feeding Tube
Dew had surgery on November 26, 2013. She is sedated and temporarily paralyzed from pain medication. She is now on a ventilator and a feeding tube.
Her oxygen saturation rate is low. Hopefully as she recovers from the surgery, it may improve to where it had been. The nurses have to suction her throat now when she coughs. There is no sound when she coughs and she won't be able to speak. Apparently we will be able to try to read her lips and she can communicate by writing, once she recovers from the surgery.
We've been told that Dew will be more "comfortable" after this and will not have to labour her breathing as much to keep her sats high. Mostly, though, it will mean that her coughing will not destabilize the ECMO port in her neck, which may improve her oxygenation and her coughing will not destabilize the BPAP mask which forces pure oxygen into her lungs. It will all be done through the throat now.
They are hoping that once she recovers from this surgery and has the ventilator that it will be enough to raise her oxygen saturation enough for them to get her exercising again or at least move a bit.
You can see from this picture that she no longer has the mask over her face, and instead has the ventilator in her throat.
Dew had surgery at Toronto General Hospital on Friday, November 22, 2013, to put her on the ECMO machine (extracorporal membrane oxygenation). They inserted a port in her neck to attach to an artery and directly oxygenate her blood with this machine since there is now nothing left of her lungs. It is risky, but she will not survive any longer without it, and we still hope she will get a transplant.
From now on she will be in intensive care unit until she dies or gets a transplant. It is very difficult for her to speak now or move without affecting the port, so she must remain as still as possible.
It may seem a bit strange to post pictures of her like this, but when Leslirae and Dew attended an information session a couple of months ago, the speaker said to be sure that one was clear about whether one wanted pictures of not in ICU.
Leslirae said at the time,"You don't want pictures, right?" and Dew said, "I WANT you to take pictures and post them on Facebook". So we are respecting Dew's wishes and including pictures.