24 Urine Test=Higher GFR-Risk of no transplant??

[Lebrat]

I'm have stage 4 CKD. My current blood test showed my GFR at 16% function. Thankfully, I have been approved by my transplant team for a transplant once my GFR reaches 15%. Even more amazing is that I have a living donor that has also been approved. Now my neph ( my regular neph, not the one on the transplant team) wants me to do a 24 hour urine creatinine test. I did one last year and it showed a slightly higher kidney function. But I was still stage 4. If my urine test comes back with a higher GFR than the standard blood test (over 20% GFR), will this kick me off the transplant list? Both my donor and myself are in our sixties and are ready to go with this. I'm trying for a pre-emptive transplant as I am not yet on dialysis. But I know complete failure is my future as both my parents died on dialysis. I don't want to delay the transplant as I'm getting physically weaker and symptomatic. I think the healthier and younger (ha) I am, the better my recovery will be from such a major surgery. Does anyone know if this urine test will risk my chances for transplant? Thank you.

[Tolmezzo]

In general no. Urine test is normally performed to check proteinuria and other kidney function. In the end urine is result of your kidney work. Coming to your question, right or not, serum creatinine level is master for CKD stage assestment. Egfr is calculated starting from your creatinine level. Rgs

[WYOAnne NKF Ambassador]

This was just one test. Your diagnosis of CKD and being put on the transplant list are based on many tests over time. Just like one test did not tell the doctor you had CKD it won't take you off the transplant list.

Urine and blood results (creatinine) can be affected by your hydration. So your eGFR was 16%, but a month from now it could be 14%. The transplant center is well aware of the fact your values will vary depending on your diet, hydration, stress, exercise, etc.

Congrats on having a living donor! Best of luck to you going forward.

Next month I will be 23 years post-transplant. My donor was a deceased 16 year old . My creatinine is stable at 0.9 - 1.1.

[barbara55109]

I don't think they calculate a GFR from a 24 hour urine. The urine test is looking for other things. As someone else said, it is the blood test for the eGFR that is used.

[KidneyCoach NKF Ambassador]

The 24 hr urine test used to be the standard (with the blood test) for measuring GFR. I'm not sure where you live (UK, USA, Canada, Australia etc) but here in the U.S. you can be listed for transplant once your eGFR reaches 20% or anywhere below as a qualifying level. So, I'm not understanding the 15-16%. Blessings

[Herewegoagain12 in reply to KidneyCoach]

Not trying to be difficult but im in stage 4 ckd and have been as low as 16% gfr creatinine 2.97 and my nephrologist told me to wait 3 months and see if it was due to dehydration or just a fluke. Fast forward a few weeks when i returned to my liver transplant team for a routine check. (I had that transplant in 2016)The first thing my doctor asked was when are you starting dialysis and had they put me on the transplant list. When he heard they were doing neither he was speechless. After he took a minute to digest the information he suggested i transfer to a nephrologist at loyola where they could keep a closer eye on both organs. I didnt care for the nephrologist there so went on a strict ckd diet and was able to get my gfr up to 30 and my creatinine also improved. That worked for a while, but im sinking again down to 22 creatinine 2.97. My nephrologist said thats still within my "range" so considered me stable and come back in 6 mo. This time my transplant doctor (liver) had this to say.

Your nephrologist doesn't do transplants, we do. So he convinced me to move to nephrology team at the transplant center. After living all this i can tell you a nephrologist will often not refer you to transplant list until you are solidly under 15 here.

[Darlenia]

My hubby was transplanted last year. In our experience, creatinine (not so much eGFR) became increasingly important the closer he got to dialysis and also immediately following transplant time. His creatinine is still closely tracked today. You'll likely be regularly tested via blood and urine samples here on out to double check your health, etc. Interestingly, as my hubby's health worsened, more and more attention was devoted to the blood tests, not the urine tests. And that continues today following the transplant.

[RoxanneKidney]

yeah what are they waiting for...unless your problem with kidney is caused by liver or something like that and tjey dont want to waste the donner kidney. Who knows, but seems like now is the timr..

[Futureckd]

Hi Lebrat,

If you decided on the transplant and have a diner ready and above all your transplant team did not ask for any more tests (they have their own) , you don’t need to do 24hr urine that your regular Jeff asked. Just focus on the transplant team whom you will deal with for a long time.

[Lebrat]

My goodness you guys...thank you for your input! After my approved donor called me today about a disturbing call SHE received from my transplant team, I realize I have a bigger problem on my hands. It seems that my original nephrologist is telling my transplant team that I don't really need a transplant because I'm not sick enough! I knew something was up. My transplant team actually made an uncomfortable call to my donor to ask if she would be willing to donate to someone else....and allow them to give me a "voucher" for a future kidney when I need one. She said no. My husband and I spoke with the transplant team and we are all now on the same page. They are going to schedule my transplant after my colonoscopy this week. My original neph is a dialysis promotor and I don't think he was looking after my best interests. I have told him months ago about the horrible ammonia smell and taste and he told me to see a dentist. When I told him about my extreme fatigue he said that yes, I'm very anemic but the treatment for that would cause me heart problems. This whole experience is teaching me how important it is to be your own advocate. Like futureCKD said above I will be working only with my transplant team from here on out. Thanks again for all of your answers.

[Futureckd in reply to Lebrat]

wow! This is really a great story to be your own advocate. I never heard that a regular neph interferes that much with a patient and donor decision to get the transplant.

I still can not forget or forgive my first neph who prescribed 60mg of prednisone per day for several months and ignored telling me that it would induce diabetic!!! Until I saw a second opinion neph, whom I continued with, who told me that the glucose in my blood was greater than 500 and sent me to the ER!! All happened last year. Knowing now how much damage high glucose in blood can do to other organs including the kidney, in addition to walking around like a zombie , I strongly advise patients to always het a second option and change the neph if needed.

[Darlenia]

Oh wow! My hubby couldn't get into a transplant center without a a nephrologist's referral. If your neurologist referred you and then rescinded it behind your back, he's a real cad; not to mention his deliberate lack of care over your health. Good riddance to him!

[Hidden]

I'm not implying anything but here is some information to digest regarding the 24 hour urine test. I have an autoimmune disease that caused my kidneys to fail. When I entered the hospital in 2017, my creatinine was 8.6, my BUN was 55, and my GFR was 6. I was started on hemodialysis for 3 months then PD for 6 months. Fortunately for me, my kidney function started improving over time. About every few months while I was on PD, they performed what was called "kinetics". The PD center would ask me to capture my excreted dialysate into drain bags and do a 24 hour urine capture at the same time. They would send both off to a lab and the lab would determine how much creatinine was in each of the two fluid captures. The ratio or result of the test is called Kt/V. They wanted to see people reach 2.0 before considering a change in dialysis. At the end of the 6 month period that I was on PD, my Kt/V was 4.75. That's when my Nephrologist decided to stop my dialysis. At that time, my creatinine was still at 3.65, my BUN at 61, and my GFR at 16. The main goal of the test is to determine which is filtering better, the PD dialysate or the the kidneys so in my case, the kidneys were filtering about 80% of the toxins compared to 20% by the PD process. They may be comparing the ratio of creatinine in a blood test to the 24 hour urine capture to try and get an idea of how much the kidneys are filtering. That's one of the tests that my Nephrologist looks at every 3 months when I see him.

[Futureckd]

thank you Lebrat for providing this information about testing the kidney vs dialysis method while on dialysis. I always wondered why some patients start dialysis and then they improved and get off dialysis. But that does not change my opinion about your neph to interfer with the transplant because you have a donor and egfr is still low and you deserve to do the transplant. My egfr is 15 and creatinine 3.3 last month, not on dialysis, and my 2 neph doctors encourage me big time to get on the transplant waiting list. So why your neph is against it?

[KidneyCoach NKF Ambassador]

Im shocked by your nephrologist giving you so much misinformation. Your fatigue caused by anemia can also cause heart issues if left untreated. Treating with injections of erythropoeitin inducing meds arent harmful for the heart unless poorly mismanaged by allowing hgb to get too high. In 21 years of such meds ive never had this happen. Many transplant centers will accept self referrals once gfr reaches 20%. Ive known lots of people get pre-emptive transplants at 18-20%. I know MAYO in MN does and 5 other transplant centers that do as well.

My nocturnal dialysis gave me a Kt/V of 4.5 but i dont have any kidneys in my body, just great dialysis efficacy.

Ive had many nephrologists over 44 years of CKD, most mediocre, a few horrible, and a few great ones. Its imperative to do your own research and yes advocate for yourself. Nobody else knows your body, your expectations and goals for your health better than you.

Blessings

[Blackknight1989]

what an informative thread. Thanks to all for sharing!

[Lebrat]

Thanks everyone for such informative feedback! One thing I have learned is that dialysis is big business and there is a push from many nephrologists to lead you in that direction. Thankfully my transplant team has stepped in and my transplant is now scheduled for Oct. 18!!!

[horsie63]

If my neph interfered like that with my transplant center I'd have to report him to the AMA. I've got a good one though, when I hit 20% he referred me to KU Med and I'm active on the list.