When I was first listed at UAMS, I agreed to
go on the inactive list so long as I had some residual kidney function
of my own. The idea was to maximize the use of my own kidney before I
got a transplant, but hopefully before I needed dialysis. I had a call
today from the the UAMS pretransplant coordinator. She called to say
that she had gotten a call from the coordinator at Barnes (St. Louis),
and that had jogged her memory about whether I was ready/interested in
getting actively listed. We talked about my changed symptoms--low energy
level, occasional nausea, bad taste in my mouth that's almost constant,
inability to eat much protein--and she said that she thinks I need to
go active now. Of course she kept telling me that she could make no
promises about how quickly I could get a transplant, but she said that
she thought it would be very soon, like maybe around 3 months, and
certainly less than 6 months. She said that our goal needed to be to go
on the active list before I need dialysis, and that way I may be able to
skip dialysis altogether. One of the things she told me is that even
though I am in a "holding pattern," (not needing dialysis), that if I
get a cold or the flu, the stress on my body will throw me over the line
and I'll need to start dialysis. Then the transplant would have to be
put off until I could regain my strength and get the dialysis to
straighten out my body chemistry. So...I think I'm ready to get actively
listed, and get my bag packed. I went by the doctor's office today and
left a note for him, saying that I want to go on the active list. That
decision is mine to make, and does not require permission or anything
else from him, but I don't want him to be blindsided.
The stars
must be aligned properly, because today I also had a phone call from
Baylor in Ft. Worth. The coordinator there told me that she was writing
to UNOS (United Network for Organ Sharing), to find out how much credit
I'm entitled to as a prior donor. The credits are used to move people up
on the waiting list. She said that she had never had a patient that was
a prior donor, and did not know exactly what UNOS would say, but she
did say that it would improve my ranking on the list.
Of course,
transplants are not without risk. The immunosuppressive drugs are
powerful and have serious side effects. But being on dialysis is pretty
awful too, and there are lots of side effects from it, especially if you
are on it along time. And staying in my present condition is not an
option because my function will eventually disappear. I'm thinking that
I've had another slip downward because when I got my ProCrit (blood
hormone) shot last month, they had to increase my dose because my blood
count was down, another sign of decreased kidney activity. Of course I
want to be well and feel strong again, and a transplant is the way to
get there, although the road to recovery (as with any surgery) is not
without some pitfalls. I'm planning to call UAMS on Monday, after I get
back from my weekend with Janet. Hopefully by then I will have heard
back from the nephrologist. The UAMS coordinator said that activating my
listing will take 15 minutes, so essentially when I call her, it'll be
done.
Yesterday I got a call from Heather Garcia, pretransplant coordinator at Barnes, setting up my pre-transplant interview with them on June 4. So I'll be starting that process soon.
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