Concerned about eGFR, diet & exercise post transplant

Posted by missyann058 @missyann058, Nov 20, 2023

I am 9 months post transplant and I had gotten my eGFR up to 80, but since August it’s been in the 60s and even dropped just below. I finally got it back up to 77 a few weeks ago, don’t know how, then 72, now it’s 66. My BUN is 11 so I’m hydrated. I have issues still getting up a lot to go to bathroom so feel I need to drink water overnight and sometimes it seems it helps with numbers and sometimes I don’t feel it does. At first I was told to drink more fluid than fluid out, then not to chase my fluid in/out. Usually I’m 4 cups behind with fluid out by morning if I don’t drink water overnight to try to keep up with fluid in/out. This has been going on the last nine months and before when I was stage 5. What is everyone else seeing and what kind of diet are you on? I don’t eat meat, but when my creatinine is around .88 I have higher eGFR, but I don’t know where .98 creatinine comes from making my eGFR lower. I know that creatinine isn’t high, but it makes my eGFR closer to 60 where I don’t want it. Docs in my area don’t talk eGFR, so even mentioning it, gets me nowhere. I was just diagnosed with osteoporosis and even though I should be exercising, I’m afraid to because I know exercise makes creatinine higher.

Thanks for any help.

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@missyann058 congratulations on your transplant. (I assume it was a kidney transplant since you are talking about eGFR, creatinine and BUN.) I wish I had your lab numbers! You also mention fluid in/out. Are you talking about the practice of measuring & recording fluid intake and urine output? This is a common procedure done in hospitals for any number of reasons. Has it been recommended for you post discharge? Were you given any dietary &/or activity (exercise etc) instructions as part of your discharge planning? What follow up do you have?

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Hi Cheryl, I am like you I wish my numbers were like Nissan to. My eGFR is 38-43 my Creatinine runs 1.5 1.9 Bun runs 27 up to 38. I am 3years liver transplant and they have dx. stage 3b ckd.. I am on prograf and feel this is ruining my kidneys. I feel the more I drink the more bloated and uncomfortable I feel. I don’t urinate a lot and it takes me a day or so to feel unloaded and fullness in my belly. It is very frustrating.
I was glad to see some discussion on this. Thanks😊

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@missyann058
Here is my experience ... there are many factors that come into play when kidney creatinine/gfr is concerned, Throughout my 4 & 1/2 years my gfr has been in the up in the 80s, however once the Gfr dipped down to 65 .. pretty much panic became the order of the day. Turned out that I had high Bp due to excess salt consumption and net net I was urinating quite often and eventually I got dehydrated.. going to ER was a mistake and they were clueless and the transplant center on call was an intern in his first week.. (no meaningful contribution) ..but next day with help of my 78 yr cardiologist I controlled the BP and heart rate back to normal and worked on my hydration . I was back to my normal gfr this was in last
Also my annual with the PCP has revealed Ostopenia... tacrolimus can be a factor in addition I have noted that I am short on vitamin D and have started taking vitamin D.
Best

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@myfablife

Hi Cheryl, I am like you I wish my numbers were like Nissan to. My eGFR is 38-43 my Creatinine runs 1.5 1.9 Bun runs 27 up to 38. I am 3years liver transplant and they have dx. stage 3b ckd.. I am on prograf and feel this is ruining my kidneys. I feel the more I drink the more bloated and uncomfortable I feel. I don’t urinate a lot and it takes me a day or so to feel unloaded and fullness in my belly. It is very frustrating.
I was glad to see some discussion on this. Thanks😊

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I have an eGFR between 17-20. If I drink too much I feel bloated and very sickly. Infact sickly to retching point. I am awaiting kidney transplantation, all this follows a liver transplant 2yrs ago in January as zi have PBC. My kidneys played up after the op and have not been good since. I feel dreadful most of the time. I am 66yrs old.

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Hi Cheryl, I have no room to complain i am so sorry that u have PBC and r having to deal w/this after 2yrs.LTP. I am 3yrs LTP and my kidney numbers have steadily gotten a little worse but I have been told u can live for years w/ckd my numbers r no where yours r. It’s always in the back of your mind will they get worse. It’s a day to day but if I drink a lot of water my stomach just gets so bloated and I do feel yucky. I am 63.
I will stay positive for u to get your TP and to feel better soon. 💚💙

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