Transplant eligibility with CHF and T2 diabetes

[PamelaSC]

Hi. I’ve been posting about my husband for a little while now and have gotten the newest test results. It appears that it’s his heart that has caused his kidney problems and not so much the diabetes. He got a virus 21 years ago that caused cardiomyopathy and CHF. It was really bad at first (EF = 18) but after a while stabilizing at his current EF of 35-40. He has only had T2 for 4-5 years and is incredibly better after loosing about 130 pounds.

The bad news is the kidney function and a new heart development. He hadn’t had any blood work done between 2016 and March 2019. In ‘16 his eGFR WAS 90. In 3/19 it was 44 and since then has steadily dropped to 21. I plotted it and it’s a pretty straight line of 4-5 point per month. If this rate continues he’ll be at 15 sometime in November. He had an echocardiogram 2 weeks ago that shows he’s developed “left ventricle bundle branch block”. This might mean he needs a pacemaker.

My question is for people who have/had a combo of heart/kidney/diabetes. And are older as my husband is 65. Any experience with transplant eligibility with these all together or does it look like dialysis is the only route?

I know we have to talk with the doctor for anything definite but wanting to know what people’s experiences are.

[Hidden]

Pamela, I wish that I could be of some help but my PKD is autosomal so I'm not in the market for a transplant. Unless there is a near relative, it may take a long time for you to find a donor. My aortic valve has been replaced a couple of years ago because of calcium buildup. That (the calcium ) happened because my kidneys could not handle the EDTA by IV Chelation to remove the calcium. I['m just in stage 4 and I haven't embraced the idea of dialysis. I'm 83 so it doesn't matter much anyway. Sorry I'm no help.

[PamelaSC in reply to Hidden]

Thanks for replying anyway. ❤️

[WYOAnne NKF Ambassador]

Maybe you should see about getting a referral to a transplant center? They would let you and husband know if he is eligible for a transplant. I know it depends on how serious his heart issues are to be put on the transplant list. Is there anyone in your family that would consider being a living donor for him?

I am 20 years post transplant. I however, do not have any other health problems.

[KidneyCoach NKF Ambassador]

As for Oldearkie's response that they have APKD and not in the market for transplant response --don't know what that has to do with your concerns however I digress. With all my experience in listing at 3 different centers and evaluations at 5 different ones, I would say the heart issues may disqualify him from transplantation. That being said some centers really try to help in getting the difficult cases to transplant. Cedars Sinai in California, Johns Hopkins and a few others. Its no more effort for evaluation at one vs. another so you may want to do some work at calling and/or writing to many centers to see what their criteria are for someone like your husband. You may find a center that is happy to help. It will however require great effort on you or your husband to do all the calling etc. Some may require referral from current nephrologist, others may not. Most will not even speak with you until the eGFR is at or below 20. Many Blessings

[PamelaSC]

Have no idea what the virus was. It was 21 years ago and the doctor didn’t ID anything. The CHF was acute, coming on over a weekend. Went from normal to EF of 18. Doctors just said “it was probably caused by a virus”. Now the enlargement has gone way down and EF has been stable at 35-40 for 15-20 years. He has recently developed a left ventricle bundle branch block and is seeing the cardiologist on 2 days. The LBBB was discovered when the nephrologist requested an echo

[PamelaSC]

The pacemaker, if recommended, would not be for enlarged heart or the EF. It would be for the left ventricle bundle branch block. That’s an electrical problem that makes the two sides of the heart beat out of sync. It’s a new development . His EF has been stable for 20 years.

[Jayhawker in reply to PamelaSC]

I’d agree that you and your husband should first talk with his nephrologist about the possibility of s transplant. His cardiologist might be someone else with whom you might confer with regard to his overall cardiac health; is he healthy enough to withstand transplant surgery.

But ultimately the transplant center will make the final determination. So contacting transplant centers to get their thoughts is also a good idea. None of us are doctors, to my knowledge, so we really can’t give medical guidance.

Jayhawker

[PamelaSC in reply to Jayhawker]

Yeah. I know. I had just wondered if anyone had the same constellation of conditions and how things had played out.

[Hidden]

A local clinic here does intravenous chelation and there is a wealth of information on the internet. Before my kidneys went bad, It cleaned out my arteries and saved me from bypass surgery.