I went for my six month check-up, and we noticed my creatinine had risen significantly over the last three weeks from 1.67 to 2.32. The doctor thinks it may be related to blood pressure being too low.
Based on test results that are in so far, I do not have CMV or BKV. No change in my HLA antigens. I am awaiting the results of my allosure test, but my first to were 0.25% and 0.125%. I have a doppler ultrasound on Tuesday. If that is inconclusive, they'll biopsy the kidney.
Have any of you who have undergone a transplant experienced this? If so, what was the root cause?
BTW, I am a 57 yo male who received a live kidney from a 45 yo woman who had excellent kidney function. Thanks in advance.
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ILMA54
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Sorry to hear about the sudden rise in your creatinine. Honestly, I am 16 months post and can't give you much advice, except to say let your doctors do the thinking and worrying for you. I know that no-one likes to hear the word "biopsy." The words biopsy and allosure usually have me freaking out. But, biopsies/allosure are medical technologies that are there to diagnose any problems. Ultimately, they are there to keep your kidney healthy.
I would say try to get your mind off the kidney. I know, better said than done. Right? This coming week, I have a routine oncology appointment as well as my regular labs. I'm starting to get a bit nervous as it's been six weeks since my last labs. That's the longest I've gone between labs. Although, my creatine was baseline 1.2 six weeks ago, things like BK or something else could always arise. My wife would likely say, don't think that way. She would also ask, do you trust your doctor? To the latter question the answer is yes. Yes, I do trust my doctor implicitly. I did get BK this past summer but within a month it was gone! Cool!
This evening I watched the Book of Bobba Fett on Disney+ as a distraction. Good series so far and a subtle reminder about the importance of simple actives, such as entertainment, to keep our minds at ease. Oh! Tomorrow, starts the new season of All Creatures Great and Small on PBS. It's a great feel good remedy for whatever ails ya!
Congrats on your transplant!! Ya, those first 12 months were a roller coaster for me. My creatinine jumped around that first year before settling down to where it is stable now at 0.9 - 1.0. I had to have my transplant biopsied twice during those first 12 months. It never was a rejection episode. I had my immunosuppressant meds dose lowered several times. For me at least that seemed to do the trick.Now, if my creatinine rises even slightly, it is because I am dehydrated. I am 22+ years post transplant and am living the good life!
Unfortunately, creatinine is a really bad marker for kidney function, but the only one we really have. It can change for a number of reasons, from dehydration, medications, increase/decrease in muscle mass, overall activity level, diet, even stress, and I would even say the phase of the moon. I had a few creatinine bumps early on and it just required adjusting my tacrolimus. While you may be completely stressing out, your docs probably arent too concerned until they continue to see it go up for months, or if it shoots up really high (like 5) in a short time.
I am now 17 years post-transplant, and about every 2-3 years my creatinine goes up from 1.8 to 2.4 for no known reasons. In fact, this happened about 2 weeks ago when it went up to 2.5. When this happens I go off my Lasix, cut out salt to the extreme, drink a bunch of water and my creatinine comes back to 1.8.
So as others have said, the first 12-24 months are a roller coaster. I would say it's about 3-4 years before you start feeling like a transplant is "normal." A lot of times its meds or dehydration. Part of having a transplant they never tell you about is developing the mental tricks to keep yourself centered and calm when things look like they may go sideways. It's really easy to mentally go from a little change in labs to absolute devastation without having all the facts in hand. As WinterSoldier said, find ways to keep yourself distracted and try to avoid letting yourself go down that dark tunnel.
I’m sorry that you are having this problem. I know that it is nerve-racking. I believe that your doctor may be onto something with the low blood pressure hypothesis. I was having persistent low blood pressure (90/50 ish) and the doc adjusted my BP meds and I increased my daily dietary sodium intake a little bit and it helped.
Creatinine is a good marker to monitor kidney health but it can be affected by many variables. This is why if the number went up, you will be asked to repeat the test again and if persisted, additional diagnostic test or procedure (like a biopsy) will be required. I know it is very scary to see the numbers going to the "wrong" direction or get anxious about a biopsy, but they are all part of effective tools doctors use to monitor how well you are doing and how effective your transplant is working. Try not to be too worried as doctors have a lot of experience with biopsy, and with the advancement made in radiology-guided procedure, it is now considered a safe protocol. Best of luck and let us know what your team recommends!
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