Phillip and I met with the transplant nephrologist (kidney specialist) on Monday afternoon. We came armed with a huge list of questions.
I haven’t been to the transplant center as a patient since my evaluation back in the summer of 2011. This meeting was to re-establish care and get informed about what to expect.
Our main concerns were about timing and symptoms. How far into kidney failure will they let me go before the transplant is scheduled? Turns out, pretty far.
As the doctor put it, “you want to get every drop of urine out of your existing kidney as you can.” This means that I will indeed eventually experience uremic symptoms. These may possibly include:
- Nausea
- Extreme Fatigue
- Swelling (Edema)
- A metallic/sulfur like taste
- Mental fog
- Itching (possible, if things go that far)
It is really weird to be told that at some time in the next 6 to 12 months (doctor’s timeline) I’m not going to be feeling so hot. That said, I continue to be thankful that when symptoms appear we will have a solution at the ready.
The transplant team will discuss my living donor next week and we hope to have those plans finalized within the next month-or-so.
There actually was some good news…
One piece of really good news came out of our meeting Monday regarding medication. Aside from being bummed about having to eventually suppress my immune system, I am nervous about the side effects of the immunosuppressant drugs. During transplant evaluation, you get a big booklet that scares you by listing all of the potential drugs you may be on with side effects, things like: headache, nausea, high blood pressure, hand tremors and extra hair growth…get the wax ready! They also list a small chance that some patients need to stay on the steroid prednisone long term, not something anyone wants.
Now the good news: we were told that I don’t currently have any antibodies built up which would have made it more difficult for my body to accept the new organ. Antibodies come from things like prior transplants or blood transfusions (which I have had, so this was a wonderful surprise). Since I don’t have antibodies present, I will only need prednisone right after surgery and eventually be able to wean down from 10+ meds immediately after the transplant to only 2 or 3. Hallelujah!!
Oh, almost forgot. There were two pieces of good news. We asked about risk of rejection or a rejection episode. The doctor told us that in the 80s and 90s, 40% of transplant recipients rejected the organ. 40%!
Fortunately, the meds have gotten much better and some type of rejection occurs in less than 10% of recipients. That said, if they suspect that you’re having a rejection episode, they flood your system with drugs to force organ acceptance. She said it is very rare to have total rejection where the transplant has to be removed. So, so, so, so, so, so thankful to be doing the transplant with the medical advancements we have now.
Moving Forward
I go back to my general nephrologist in June for a checkup assuming symptoms don’t appear before that (which I don’t expect). If symptoms do show up, we’ll give them a bit of time and eventually schedule surgery which currently has a 2 month wait time (lots of people getting new life…a very good thing indeed!)
Until then, I’ll do my best to stay present with how I feel today and wait to worry about feeling crappy until I actually feel crappy…then I can whine…a bit.
Life is exactly what life is. I’m just along for this superbly bumpy ride.