I see that neither of us completed the last entry.....yes, RJ was successfully released from the hospital on Tuesday 12/1 and was back home before dinner time - an all-time record for getting away in a timely fashion, after a rare 1-night stay that did not expand into something longer!
We hope for just routine clinic visits this month, now that he has been so well tuned up and checked over. Other than the usual, he will also be seeing a Hematology specialist to follow up on his platelet count that was so low in November. He is also scheduled to see a Neurologist later this month, to make sure that his complaints of occasionally wobbly, uncooperative legs are not something we need to worry about.
One possible change in treatment is to add a 4th day of dialysis. The transplant team explained that it's crucial for his pulmonary pressures to remain low and his lungs to remain healthy, so that the new heart and kidneys have the best possible environment for success when they are transplanted. The additional time spent in dialysis is not something either of us look forward to, but knowing the reason for keeping fluid levels at a minimum will help us cope with the idea.
It was exciting to hear that 2 new heart transplants were done this past Sunday at UCSF, so we know the possibilities are still there for "our" turn. With every new diagnosis and hospitalization we worry about something happening that could be a dealbreaker for him getting a transplant - that's always a possibility. So as long as he can remain in the running, we will be as accepting and cooperative as possible with the additional appointments, treatments and specialists. We may need reminding of that when we start complaining, so feel free to provide us with a reality check at any time!
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