Fluctuating GFR after transplant

@ugottabkidneyme Welcome to Mayo Clinic Connect. Congratulations on your husband's kidney transplant!

There can be several factors that influence our kidney function, and they can change rapidly. Included are these: changes in medication [stop/start/new dosage], hydration levels at the time to of the test, exercise, stress, dietary modicfications, illness [like recent flu/cold/surgery]. Has his transplant team indicated any concern to you, at this time?
Ginger

No med changes, stress, or illness. Lead dr on his transplant team retired so we've been working with his local nephrologist who can't explain the drop/fluctuations and just says the biopsy sample looked good, but dodged my direct question as to whether he'd seen this dynamic before and how those scenarios played out, which leads me to suspect that the answer is "not great". I understand that doctors are loathe to talk actual facts and numbers, but it's put us in a position that we don't know what to do. There's a job opportunity that would nearly double my salary, but we'd have to move and then I have no earned vacation saved, no seniority, etc. If the bottom may drop out on him I'm better to stay where I am, if he's stable we're much better off moving, but I can't get a straight answer either way, so I'm stuck scouring the internet trying to find similarly situated people to try to get some idea of what life may look like for us in 2-5 years.

My husband is 7 months post-transplant. He has Iga and received a live donation from his sister. We see his creatinine and GFR bounce all around. He keeps a daily journal recording what he has eaten, exercises, water intake, etc. We notice that protein intake along with exercise seem to have a huge impact on these labs. Weeks that he eats more animal-based proteins vs plant proteins seem to see the highest upticks. Weeks where he does more weight lifting than cardio also see this trend. In addition, in weeks where his Tac/Envarsis lab is higher, creatinine goes up and GFR goes down. Around the same readings as your husband. The transplant team is not too concerned and has indicated he should just keep doing what he is doing. I mean, everyone is different so normal for one may not be normal for another, but all has been well. I just wanted to share our insights that were gleaned from my husband's diligent recording. We were able to draw some direct parallels. I hope this is helpful.

@roxylulu22 Wow! That's really great to read your post, and see how seriously your husband is tracking his situation. I bet there are many doctors who would love to have their patients as engaged as he is! Is it a "guy thing" or is he an engineer-type person?!
Ginger

@ugottabkidneyme Take a look at what @roxylulu22 posted and perhaps this will help your dilemma. If your transplant doctor retired, check with the center to see who has replaced him on your team. It is critical that they monitor his progress and success after transplant.

As for your local doctor not saying too much, it could be because he doesn't have the background knowledge of post-transplant to address your concerns. A good nephrologist will admit that, and will also work hand-in-hand with the transplant team/center to enable a patient to have their best recovery/ongoing health.

Can you consider this and reach out? When my husband had his transplant in Oct 2016, he was closely followed. In 2021 he had to relocate his follow-up care because he moved to our retirement property 1000 miles away from the transplant center. It's possible to do this!
Ginger

I think it started as my role as the support person and I used it in the beginning to ensure that I did not forget anything! lol But as we watched weekly lab results fluctuate and through the records were able to provide good data to the transplant team to aid in their adjustment of meds and such, it just stuck. He does have an "engineering" sort of mind as do I so we both quickly adapted to the "data" mindset as we work through this journey of keeping him as healthy as possible. Yes, I think the transplant team (especially the dietician) really appreciated the efforts 🙂

I did that, also, with my husband's post-transplant appointments. The transplant dr told me I took better notes than the MA. They were not as detailed as yours seem to be, but I imagine that having that information, and sharing it with the team, will give them a lot to think about. And, it cannot help but make the entire experience better. They will understand more how a patient can influence the lab numbers by diet and activity.
Ginger

I’m a few weeks post op. My kidney started working immediately in surgery. My GFR 83. I was ecstatic! In 16 days my GFR has declined 23 points!! Not sure what to think. I started Imodium, have had cdiff explosive diarrhea for weeks and I think that’s the culprit. Getting iv fluids now. I pray this does the trick💞

I completely empathize. I’m going through the same thing.

@sissydog Welcome to Mayo Clinic Connect, and congratulations on your new kidney!

Our eGFR can fluctuate as our hydration levels change, our medications change, even how much exercise we get changes. I would be surprised if your eGFR doesn't level out after you get through the horrid CDIFF infection.

What are your doctors telling you?
Ginger