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What are your post kidney transplant lab and follow-up schedules?
Transplants | Last Active: Aug 11, 2022 | Replies (17)Comment receiving replies
I'm glad you're able to relate my frustrations! Unfortunately in our area, the only way to find a transplant nephrologist is to transfer care to another transplant center. And I'm not sure we are ready to transfer care at this point. Does your transplant nephrologist have his private office, or is he an employee of an institution with a transplant center? I'm not able to find a transplant nephrologist with his own private practice in my state of California.
Can you please explain to me what "transfer the UNOS credit after 3 years" mean? Do you have to do that when you transfer kidney transplant care?
I think labs can be spaced out once the patient is stable but at 5 months post I'm not confident that drawing labs every 2-3 months is going to catch things early. Tac level can fluctuate at any time when there is a change in manufacturer which we really don't have control over. Tac too high can damage kidney, too low risks rejection, liver enzymes can fluctuate due to meds, etc. Labs need to be more frequent during the first year post transplant. When the patient is stable, I think I would be more confident to do labs once a month.
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Good Questions on your part: I should have been a bit more articulate:
- UNOS credit: Every Transplant center declares successful outcomes at end of 3 years for public records, so for example if a transplant center does 100 transplants a year - say all the kidney transplant recipients survive 3 years then the outcomes are declared for that year as 100%, typically you can see this statistic on SRTR.org web site. just select a transplant center and see what the success rate for outcomes is. (Data from SRTR was used to prepare a short list of the transplant centers - my wife insisted as she was the donor - I had no say !! ). So for me to transfer the care to the local transplant center by signing a document (which would be sent to UNOS) that if I survived 3 years then -the local transplant center would get the credit for my transplant was not acceptable.( for reasons I listed out in the earlier msg)
Yes in my case the Tacrolimus levels did fluctuate with different manufacturer's, So I asked my doctor to put in the prescription for a particular manufacturer be only dispensed and that helped to a certain degree. The levels can still vary if you travel timezones and are not taking tacrolimus at given am/pm times + diet ( I think). I am not a doctor - but do believe if high doses of tacrolimus generate toxicity and hence initially after transplant my Transplant center prescribed Pantoprazole Sodium 40mg for 90 days ( It prevents generation of acid in the stomach) In my case the Tacrolimus dose had been reduced significantly to my surprise but gradually during the first 90 days
If you are in LA area I am sure you can find a Transplant Nephrologist. ( ask the transplant center they may be able to guide you)
My transplant nephrologist is affiliated with a transplant center and as well has well as has regular office. So for some months he asked me to come to the transplant center office and the I noticed that the transplant center medicare medical billing was much higher than what it is now (see him in his office and not the transplant center). + if you draw the blood at the transplant center the billing becomes much higher.
If the GFR of the kidney is reasonably good & stable that is a good sign, but that does not mean you cannot get other issues.. in my case my GFR is consistent & good but I have issue of PTE Secondary, Post Transplant Erythrocytosis.(blood becomes thick..the sooner you know the better it is .. in my case now I have to more vigilant about clot formations)
Best Wishes