Hello: My husband had a liver transplant many years ago and has done very well, for which we are very grateful. Since October of 2023, his creatinine started rising and his egfr started falling. He had blood work done several times since then. He latest egfr is 45, his creatinine is 1.6 and his BUN is 28. He did have a temporary decrease in his creatinine of 1.2, but it's back up again. His hepatologist changed his Hep B medication from Viread to Vemlidy just recently and also cut back his dosage of Prograf. We are getting very concerned now because his feet are swollen and also his urine had 1+ protein. On top of that, he has very bad nummular eczema which we were treating with topical steroids but we stopped those because of his kidney numbers. Now the eczema is worse than ever and we're just using over-the-counter lotions.
Has anyone else had a similar situation where the kidney function started going downhill in a matter of months?
Just looking for some advice and support.
Thank you!!
Written by
PennyLovas
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First of all, technically he isnt at kidney failure stage (search for my post a few days ago on that), he's in stage 3 ckd. And, with the right management, some notable practitioners believe he may never get there eg link/comment below.
That said, the key is to find proper "treatment and healthy life changes" and that's not always easy with CKD not a perfect science from our experience. On this forum, you'll find plenty of advice with some successes reported but everyone is different. And the so-called "medical experts" eg nephrologists, are very fallible - my mum's certainly is, with limited/no help for her!.
However, she's had significant success by adopting a Nutritional Therapy (NT) protocol but with challenges along the way and still. Others will direct you to renal dieticians but they can be criticised based on experience etc., including my own.
As your husband has a series of medical issues, personally I'd start with a qualified Nutritional Therapist who could alleviate some of them, working alongside his medics. He may even be able to come off some drugs which may be adversely contributing to his medical problems. Mum was able to wean off BP medication early on in NT. Good luck!.
I know protein in urine can make your feet swell they made my husband see a kidney doc when that happen they gave him fluid pills don’t know if your husband is on fluid pills . Yeah seem he is in stage three but I know you are trying to find help before it get worse . Talk your concern to nephrologist and dietician
In my opinion, excessive salt in your diet and a sedentary lifestyle contribute are major contributors to edema (water retention). In the past it was suggested that lots of water intake was a good thing for CKD patients. However, other studies have indicated that excess water intake is not helpful. As a longterm stage 3 patient, I drink no alcohol or carbonated beverages and strongly limit my salt and sugar intake. Mostly I drink water, herbal tea and almond milk. Also, I gave up meat and eat only seafood and veggies. A dietician was just as helpful as my doctors in setting up dietary guidelines for me. When I go on cruises I always suffer from edema despite ordering no salt meals so you are better off making your own food at home whenever possible and please avoid all fast food.
Are you seeing a Nephrologist? As you may know the immunosuppressive drugs he is taking are damaging for the kidneys, there is not much you can do about that but educate yourself and prepare for a possible eventual kidney failure. Is there a live donor he can rely on for a preemptive transplant?
Bumblebee Tuna has good insight. My hubby has a transplant and the immunosuppressants have side effects. Simply remember that if your hubby's eGFR reaches 20 or less, he can immediately begin the process to be on the transplant list. (Some completely skip the dialysis stage by getting a "preemptive" transplant.) In the meantime, your hubby's lab data indicates he isn't close to being listed yet. But reaching out now is good! I'm sure his team will continue to check and follow the situation, and I hope they will let you know what's going on soon. In the meantime, please don't adjust his diet until you get approval from his doctor(s). It's important not to add problems to his plate. The "kidney diet" manipulates all sorts of electrolytes important to the proper functioning of other organs including the bones which produce blood cells, and more.
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