Any liver transplant patients experience kidney issues?

Hi. I had a liver transplant also. And also have had gout after the transplant. Very painful, sorry you had that. I just had a set of all the blood work and raidiology stuff for my 2 year done. And my kidneys are (have always been) fine. But I also have low magnesium and also had high creatinine at one point. So the gout is not necessarily an indication of kidney disease. They put me on Colchicine that has resolved the gout 95%. Hope your kidneys are fine and best of luck.

@craigcraig thank you for your kind reply. I am still trying to understand what constitutes kidney disease post liver transplant . I have not experienced major complications and imagine that for many of us our complications are more subtle if we are lucky.

I have developed chronic kidney disease (ckd) as a result of of my transplant. Began seeing CKD in my post check up reports but little mentioned to me by my doctors initially. They always ran kidney function tests at my yearly exams. I believe because we are at risk for CKD. Tactolimus is a drug that can certainly cause nephrotic side effects and can be harmful to kidneys. I have talked to my team for last few years about changing to another anti rejection but they have been hesitant. I was told tacrilimus is the “gold standard “. Just keep in communication with way and watch your functions. They won’t diagnose CKD until your numbers run elevated and egfr falls below a certain level for a few consecutive lab draws. Kidneys can fluctuate for various reasons so they watch the pattern. As my numbers declined, I finally pushed to see a nephrologist on staff. My nurse coordinator didn’t think I needed one when I reached out to her to ask doctor, but I insisted and they referred. Just watch and advocate for yourself.

I am 6 years post being diagnosed with cirrhosis of the liver, my meld score is 14. Ive always had 1 lesion but a recent MRI shows 2 more at 1.2 cm. I have already had transplant testing, my physician gave me 2 options: 1 radiation directly on the blood vessel feeding the lesions or a liver transplant. I am curious about the side affects of a transplant and is it worth trading edema meds for the other 2 options.

@woodrowbloom Hi. Sorry I am not familiar with edema meds and cannot compare. But while I , and many folks, have had liver transplants it is a load and very serious business. After transplant Mayo had me on 24 different meds (meds not just pills). I am down to 10 but some are for life along with a compromised immune system. Two years ago when I had mine at Mayo AZ there were six of us getting liver transplants from the same insurance company at the same hotel. The families have kept in touch via a text thread. While 5 of us are doing well or at least pretty good one person has passed away. That may be around the average. When folks have asked a similar question re liver cancer or stage 4 liver cirrhosis I have shared the opinion no guarantee and a very tough year but go for it. I guess if your situation is or gets life threatening go for it but if a less invasive solution can take care of the issue then try that
first ? Best of luck on whatever you choose.

@craigcraig

Thank you! I am still waiting for a final decision on the outcome of the MRI results 3/19 just trying to be proactive. I only agreed last year after some pressure from my Liver specialist. It just seemed that all of UCHICAGO medical was pushing this like a 'car salesman' there must be big money involved here or the Dr's just like playing with their knives! Since being diagnosed I immediately quit drinking/ smoking, changing my diet and after 6 years I have had no issues whatsoever, I still do the same things as I did 10 years ago my quality of life is better for not having those vibes. I have lots of questions besides the side effects, cost to me after? The drugs you mention have already put a red flag on this. I will be 66 very soon and healthy outside of cirrhosis so am I jumping the gun here? I only take 100mg spironolactone and 60mg furosemide for water retention. So ?????

Cool. I am glad you are being proactive. So glad you quit drinking ,smoking, diet. Well done , not easy things to do !! The financial costs for me two years out are not bad. Most of the meds are covered by my insurance through Medicare and I have to do monthly bloodwork and annual scans. Most of that is covered also. I am late 60s myself and while I live in CO I lived in Chicagoland and Wisconsin. UCHICAGO was (is ?) supposed to be good. I have found most DRs to tell it like it is. They have a code that SHOULD prevent them from over treating for $ gain. If they are suggesting this hard maybe your liver is not in good shape ? Just guessing but I would be concerned if a transplant is what they recommend. I guess it depends on that and if a less invasive way would work long term ? Glad you are being proactive. Hope the MRI gives you good news next week. (---:

@katebw, I am of the understanding that liver, or any organ transplant recipient, is at risk of developing kidney issues. Of course much can depend on our medical history, our genetic makeup, and the medications that we take. I still have a 3 month lab schedule and annual exam which includes a thorough kidney work-up. That is my own experience.

In addition to my patient experience, I have located some information that might be helpful in the Mayo Connect Blog. I read that we may be at higher risk of chronic kidney issues as we age. And that medications might take longer to exit our system which presents potential issues. Here is the article:
-Healthy Aging After an Organ Transplant
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/healthy-aging-after-an-organ-transplant/
.
Kate, Are you experiencing some kidney concerns? Are the doctors concerned? What kind of support/monitoring are you receiving?

@rosemarya thanks for your reflections and this information- it is helpful. I have developed chronic kidney disease since my transplant which I’m told relates to tacrolimus, age, and I have gained a little weight since losing a lot after my liver transplant. So I’m working on exercise and diet. I am now 58 and trying to get as much under control as I can before age takes too strong of a role. I have found increasingly that my liver team is more narrowly focused on fewer aspects of my health and refers me elsewhere increasingly. That feels both liberating and confusing especially when many of my current issues (like kidney disease, gout, increased infections, skin problems, etc) stem directly from having a transplant. Even a “normal” problem like falling and needing stitches in my knee takes on a different hue due to post transplant issues yet my life team does not “care” about this so I often feel on my own to sift through the various issues. Now I’m just venting! Thanks for listening.