Liver
CellCept (mycophenolate mofetil)
Hello,
I'm a 2 1/2 yr liver transplant patient, and I just had my yearly visit this week.
My lab results two weeks ago came back like a Christmas tree (all colorful)
I got COVID-19 a month ago, so I thought my lab results were off because of it. The BUN/Creatine levels were very high.
So, my doctor dropped the Cellcept from my daily meds (I was taking 500mg twice a day), but she said that it's because I'm already 2 years after my transplant and everything is fine. But when she said everything is fine, I asked about the kidney situation. She said not to worry because it was not that bad (ONE OF THE REASONS I ENDED UP NEEDING A LIVER TRANSPLANT WAS BECAUSE THE DOCTORS KEPT SAYING THAT WAS EVERYTHING FINE, JUST CHANGE YOUR DIET), and never paid deep attention to my problem until was too late.
So, I believe that the high BUN/Creatinine is a concern regarding my kidneys, and I feel that it is my responsibility to ensure it is closely monitored. Now, I have the fears of organ rejection because of the medication modification.
I just felt that after the liver transplant, the transplant doctors are only concerned if the liver is healthy and everything else is the other doctors' problem, making it hard to go along with a peace of mind.
It is stressful, even though this is the first time I have a scare after my transplant.
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Transplant Patient
I completely get how that can be stressful! The first time I ran into any sort of issue post transplant I was so disoriented and confused at who let me do this. While it felt like a massive deal to me, I did come to realize this is something my transplant team deals with every day and while it's new to me it's not new to them.
I don't know where you live but I was weaned off of cellcept too at the year/year and a half mark and was told that's protocol. If you're stable enough, the less meds you can be on the better! It can be really scary to change up your meds, and hard to see it as a good thing but I try to view every med change as we're finding out what works (and what doesn't) for my body. It might take some fine tuning, and that's why your doctors are keeping such a close eye on your labs.
I would agree that specialists tend to really hone in on their area. your feelings here are so valid, especially considering you have a history of things being missed. You're getting labs done anyway so try to keep an eye on trends. I'd give it a few months, keep an eye on things, see where your labs go and if you notice any symptoms, and then if your kidney numbers are still off, or you start having symptoms, push for a nephrology referral.
I am sorry you are frightened, bad bloodwork is always unnerving. Only suggestion I have is to find a good nephrologist. My kidneys were shot pre-transplant and still struggle. My nephrologist is fantastic and their job is to look at your kidneys and work with the liver doc. Anti-rejection meds can be very hard on the kidneys. Good luck, let us know your next steps.
This conversation is very informative to me as I am awaiting a liver transplant any time now. I am really in the dark about meds.