Transplant getting close to the end

[FancyJ26]

How do I get back on the transplant list if my kidney is getting close to the end? Do I have to go back on dialysis first? My doctor isn’t saying much, just monitoring and having me get labs. I don’t want to wait. I want to be proactive. I’m 65 and don’t have time to waste before it’s too late. What are my options??

[AndrewT]

Dear FancyJ26,

You 'pose' a Very Difficult question, my friend. You say Nothing of you 'Condition', your Health or you Overall 'Well Being'. So let me Start by making a few, shall I say, Suppositions.

I assume that, despite your age, you are in Good (or at least Reasonable) Health. You live in a 'Good' Home, be it your Own Home or Communal Accommodation (or perhaps with Relatives). I again assume that you ARE 'Well Known', to your own Doctors/ Consultants- and also your GP.

Within the above 'Framework' my answer would be -To ask for a 'Transplant Review' by the Current Transplant Co-Ordinator. You MUST have had, at least, Some Contact with this Team. The Team will, no doubt want Blood, Urine and maybe Stool (poo) samples, along with Heart, Lung and a 'Whole Host' of Other Tests.... Before 'They' will, even Consider, putting you on The Transplant List. Trust me a Transplant IS a MAJOR Operation, it's NOT like having a Tooth Out! (Sorry but if you think you will Recover in Two Weeks- or even Two Months- take your Blinkers Off FancyJ26... no really.)

I'm not going to go into any more 'Detail, regarding a Transplant, on here but, if you Do want to 'Talk' more then please Do P(rivate) M(essage) me. I'll Finish by sending you my...

Very Best Wishes

AndrewT

[FancyJ26 in reply to AndrewT]

Well yes, I’m known to my kidney group ( Nephrologist) and I own my home. I’ve had my kidney for 15 years and it was a cadaver. I’ll be drawing Medicare soon and believe it will be even harder to qualify with Medicare. I have secondary insurance and will be retired in November.

[Eyak1971]

I was 70 when I received my transplant. I had been on dialysis for 5 years. My kidney problem was due to a cholesterol embolism that landed in my kidneys and kidney stones. While waiting for a transplant I had a bypass to prevent a heart attack which would have taken me off the list. Some transplant centers age is a problem but generally most go by the old adage if you have 10 more years of life you are good. I was working part time and was on private health insurance as well as medicare. Medicare was my primary. Had colon and teeth exams according to the required schedule. Had a skin cancer removed. Was very content on pd. Then I got the call. Over a year with my transplant and if it doesn't last I hopefully can return to pd. Didn't really like hemodialysis I had to do for a short time. So even at your age there is hope for another transplant but don't give up on this one. Your doctor hasn't. Take care.

[FancyJ26 in reply to Eyak1971]

Thank you for giving me hope!

[WYOAnne NKF Ambassador]

Sorry your transplant is failing. Your nephrologist is usually the one that refers you to the transplant center to get listed. And it is true that some centers do have a cut-off age for a deceased kidney. UC Davis has72 as the age they will no longer list people. I know most will do a transplant when the recipient is older if a living donor is involved. Your nephrologist would make the decision when it is time for dialysis. Don't give up on your transplant, maybe there is something the doctor can still do to help. Some medication?I am 21+ years post transplant from a deceased donor and am doing well.

Take care.

[FancyJ26 in reply to WYOAnne]

Wow!! 21 years post transplant!! That’s a relief to hear!! I thought they don’t last pass 20 years. That’s amazing!! Congratulations to you!! Mine isn’t done yet, but my creatinine is mighty high.

[FancyJ26 in reply to WYOAnne]

It’s been six months since my last post to you and my kidney function is 27 and my creatinine is 2.16. I’m having some pain in my lower back. My doctor just keeps monitoring and checking my labs. I’m scared that it maybe close to the end. Or is it?

[donnabethme]

Yes, some last 30 years. So far mine is 25 but getting older ( creatine 1.5) Be positive! With luck and care it could happen for you!

[FancyJ26 in reply to donnabethme]

Oh wow!! 30 years! Was yours a cadaver? My creatinine was 1.9 the last time checked. That’s hitting it very close to slowing down.

[LisaSnow in reply to FancyJ26]

1.9 in creatinine isn't bad at all! What is your current GFR? Has your care team biopsied the transplant to determine the causes for the decline? Many times they are treatable and reversable.

[donnabethme]

Yes it was from a cadaver from a 30 year old woman who had an aneurysm on her way to work. I am 77 years old so I am not optimistic anyone would give me a kidney again. Just trying to hold on to the one I have even with the side effects I’m starting to get … bad swelling, hyperparathyroidism, etc.But I’ve been lucky. I feel I don’t have a right to complain.

I never had a rejection episode. I did peritoneal dialysis and was able to work and even travel.

Keep hoping. Maybe you will stabilize at 1.9 or even go down ( that happens)

Let us know!

Best

D

[FancyJ26 in reply to donnabethme]

Wow!! Thanks!!!