Failing Fast

[ILMA54]

I am a 54 year old male. I was born with one kidney, which we found out when I was 26. It has been failing. For 10 years GFR was stable in the mid 20s. Since last March, it has dropped to 11 (was 15 three months ago). On the transplant list for 6 months. Need advice on finding donors and managing disease.

[Bassetmommer NKF Ambassador]

Hi ILMA,

Are you on any sort of renal diet? It can help. There is a lot to finding the right diet and it is best to go to a renal dietician for one. I will post some sites for you to look at. There are some basic concepts recommended which include lower salt, less protein, and being careful with potassium and phosphorous. Switching to more plant based foods is good, but again have to be careful with potassium if you have an issue with that. By seeing a renal dietician, they can tailor your diet for other medical conditions you might have such as diabetes. They can also recommend water/fluid intake. Check your medications to make sure they are kidney supportive. I have added a site for that as well.

As for donors, you need to ask. Get the word out there. You might be surprised who will step up, but if you don't ask...

Good luck and let us know how you are doing.

niddk.nih.gov/health-inform...

vcuhealth.org/media/file/re...

webmd.com/a-to-z-guides/und...

[kungfudude]

ILMA54,

Bassetmommer gives good advice that I cannot improve upon. I can however, offer empathy. I am a 57 year old male and I too was born with only one functioning kidney. Even after two childhood surgeries, I've lived my whole life with the use of only one. My current GFR is 38 and I have recently reduced my sodium and potassium. I never realized until now just how much salt is in everything and I was consuming. I can feel a difference in my body and urination function since I lowered my sodium. I am still quite active and want to stay that way.

As for a donor, I have a sister who has already offered, should the need arise. Hopefully it never will.

Good luck.

[Herkidney]

Hi. I have PKD and had a kidney transplant a little less than six months ago from a living donor, my husband. I did talk about my medical condition with almost everyone I knew (work friends, neighborhood friends, old friends, family, etc.) I didn’t complain or go into excruciating detail, rather I talked about needing a kidney transplant because of my disease. I even wrote a letter and sent it out with my holiday cards. The response was amazing. Even a cousin who I had not spoken to in 25 years ended up going through the testing process and ended up being the “backup” donor in case my husband could not qualify. Please do not be discouraged, just let everyone know what you are going through in a straight forward way. Wishing you the best!