Thursday, September 13, 2012
Exercise is amazing. Did I mention that I love exercise? Thirty minutes of weights in the gym, and I am significantly more stable (mentally, that is). I start to feel human again, or rather, I feel something that I would assume to be in the human-like range. What does it mean to feel human? Perhaps, I simply mean that I feel more alive, or in the least, more able to function. Perhaps, I might need to experience a certain amount of sleep on a regular basis before I can be expect to be able to engage in a philosophical discussion with any degree of insight or intellect.
It is early evening, and I have returned home to make dinner (and of course, I went to the gym. Did I mention that I love exercise?). James is back at the hospital in a benadryl-induced sleep. He is eager to complete his last treatment and be given his discharge papers. The muscle jerks and spasms that were reminiscent of James’ past dystonic reactions to various anti-emetics have started earlier in the treatment process, after the administration of benadryl, but before the thymoglobulin. We are starting to suspect that it may be an allergic-type reaction to the benadryl, or even a psychosomatic response in anticipation of the anti-lymphocyte globulin. Regardless, James’ best defense is to close his eyes, and hope for an extended period of uninterrupted sleep to get through the process. He is insanely tough (and very tolerant of the constant checking of vitals, and the disruptive environment that invariably is the hospital).
James’ lung function appears to be stable at 25%. This is good news to the extent that it does not represent further decline. It could be weeks before the potential effects of this treatment are known. In the past, James and I have been cautiously optimistic (within reason). This is different. We know the efficacy of this treatment is rare. Our understanding is that individuals with acute cellular rejection tend to have a positive response. That being said, James does not present as acute cellular rejection. His rapid decline is more suggestive of bronchiolitis obliterans. This was the diagnosis given a few weeks ago. It is a diagnosis of exclusion for deterioration with no known cause. We are willing to make all efforts to recover lung function, but it is not clear whether this is possible. The damage may already be permanent. This is impossible to know at this stage.
James is struggling for breath with any or all exertion, including slight inclines, fast pace walking, climbing stairs, and even light stretching. Nevertheless, James’ oxygen saturation remains within the normal range. This is a good sign. He does not require oxygen support. On the other hand, it seems as though James’ heart is compensating for his low lung function. In the past, James had to work exceptionally hard to increase his heart rate to an aerobic range. This is no longer the case. James’ heart pounds from a couple of stairs or even several minutes of stretching. This is followed by throbbing headaches, extreme shakiness and fatigue, and a sense of weakness and complete breathlessness.
James is learning to take it slow (or at least, slow down), but he does not want to lose the benefit and hard work of the last 16 months since his transplant (and longer). He has been able to build incredible strength and endurance. We enjoyed hiking, swimming, and bicycling. We were lifting weights several times a week.
Here he is in the Gulf Islands Driftwood in February 2012:
and another from only a few months ago:
We have been asking the hospital for guidance over the last couple weeks of James’ admission. We made several requests to be seen by the transplant physiotherapist. We continued to inquire on a daily basis to each different doctor and nurse. We were finally able to meet with the physiotherapist this afternoon. She was wonderful and completely sympathetic to our situation. She understood the importance of maintaining James’ exercise regime (both for his physical health and as an appetite stimulant) and went to the transplant gym to advocate for us.
The transplant gym is reserved for patients actively awaiting transplant or up to three months post-transplant. The schedule can be difficult to arrange, because of the need to separate individuals with Cystic Fibrosis with burkholderia cepacia (and other dangerous and infectious bacteria). We have been given permission to return to the transplant gym (even though James is not on the transplant list). We are so grateful for the help of the physiotherapist in advocating for us, and for the kindness of the transplant gym in accommodating our needs.
James and I seem to grow stronger together in crisis (rather than apart). James tells me, “I love you more and more each day.” I do not hesitate to share the sentiment. The feeling is mutual. We do have our moments of tension, but James and I are able to attribute these to high dose steroids (on his part) and lack of sleep (on my part). We are forgiving of each other’s imperfections, and continue to hold each other closer at night. We are all too aware of the fragility of life. We cannot afford to take a single moment for granted. We have to focus on the love between us, and the joy and happiness that we bring to each other’s lives.