Tacrolimus and ckd

[Herewegoagain12]

Has anyone here had a transplant of a different organ prior to developing ckd? The tacrolimus keeps my liver alive is also killing my kidneys. No doctor seems to want to take responsibility or help me deal with all the symptoms I am having since my gfr took a big hit a year ago. Liver functioning perfect so no help from my hepatologist. And all my kidney doc keeps saying the tacrolimus is what is causing the issue. Gfr floats around 20 but has gone down to 16. Then popped back to 22. How am I supposed to get through all this without help?

[Jayhawker]

Is there a nephrologist to whom your hematologist would recommend; someone with whom he ir she will work?

Jayhawker

[Ads568]

Hi Herewegoagain12,

Yes, I had a heart transplant in 2019 and completely get what you mean.

I’m on tacrolimus, azathioprine and steroids (amongst others drugs) and my kidneys are suffering too. In fairness, they were already starting to struggle from all the heart failure meds before transplant. I’m stage 3b CKD now. I have asked my transplant team about my kidney damage, but they basically said without my heart, nothing else can survive, so that has to be the priority, but they said they would refer me to a nephrologist if they were concerned. I also find many contradictions between a kidney healthy diet and a heart healthy diet - my heart needs potassium/my kidneys don’t like potassium! Such a balancing act, but I’m grateful to be alive to have these worries; without my transplant I’d be long gone by now.

Best wishes and I hope you get some answers soon.

Ads568

[Herewegoagain12 in reply to Ads568]

Thanks for the info. At least I'm not crazy.

[PPearl]

Yes, I had a bilateral lung transplant and the tacrolimus has severely damaged my kidneys which is why I am in this group. It is not unusual for lung transplant patients to later need a kidney transplant due to the toxic medications we have to take. I try to slow down the decline by doing what I can...water, proper diet, and caution of other medications.