Dialysis working too well, hard to find donor

[curiousmind2019]

Hi,

I started dialysis (PD) a few months ago, trying very hard to have a sense of normalcy. The problem now is.. I look better with the PD (less tired and less foggyless). Also, starting to get used to how to spend my days and fit events in between PD exchanges (i'm still on manual).

The problem I have now is. I don't know how to have conversation with potential donor. They are like: "Looks like you are fine on dialysis. Can't you be on dialysis forever?".

With dialysis now, there is no sense of urgency for a transplant. From a potential donor's perspective, I can see that they might be thinking "it doesn't look like this is life threatening. he/she will be fine. why should i give up my kidney for this person?"

Anyone with similar experience? How did you convince potential donor they should still consider donating?

[Unityismine]

I have been on in center dialysis for 7 months now. Would also like to hear an answer to your question. Good luck and thanks for posting this.

[smhsld8]

that is so true , but it still takes a toll on us

[Transplant2018]

This is a common concern in that many with chronic kidney disease don't "look sick". I'd suggest emphasizing how you feel to make it clear you are sick despite your appearance, and that your life will be shorter on dialysis than with a transplant.

[curiousmind2019]

Thanks for the comments. On the point about explaining 'life will be shorter on dialysis than with a transplant". I started to dig up some info that might be good to share with potential donors.

“What patients often don’t realize is there’s also a huge survival advantage with transplantation compared to staying on dialysis,” he explains.

For example, a 30-year-old on dialysis would have a life expectancy of 15 years. With a deceased kidney donor transplant (a kidney from someone who is brain-dead), life expectancy increases to 30 years. Best of all, a living donor kidney transplant increases life expectancy to 40 years.

piedmont.org/living-better/...

It has also been studied that the longer I am on dialysis, the poorer the outcome for transplant.

"Published medical data has shown that the kidney will work much longer in patients transplanted before they start dialysis. Patients who wait for a transplant on dialysis for two years are three times more likely to lose their transplanted kidney than those patients who wait less than six months on dialysis."

bidmc.org/centers-and-depar...

[Owlbox]

Maybe one of your family can help,it was my brother that gave me my kidney.

[curiousmind2019 in reply to Owlbox]

My sister is going through evaluation but I think she’s having second thoughts due to reasons i mentioned in this post.

[Jayhawker in reply to curiousmind2019]

Are you also listed for a deceased donor kidney?

Jayhawker

[curiousmind2019 in reply to Jayhawker]

Yes but I am in state that has 8 year wait time

[Jayhawker in reply to curiousmind2019]

Yes, that’s definitely an issue. I’m going through transplant eligibility testing right now. If I qualify I’ll be waiting for a deceased donor kidney. Given my age, I may well find that a deceased donor kidney will not arrive in time for me... There just really are no guarantees for any of us with regard to transplants.

I’m definitely prepared to start dialysis when my nephrologist tells me it’s time. Of course I’m also doing my best to manage my diet et al well in the interim; to postpone dialysis as long as is medically advisable.

Jayhawker

[Shanny1024]

I don’t think it’s possible for people to understand our predicament unless they’ve actually gone through it. Everyone knows how horrific and life threatening cancer is because it’s discussed, shown in the media, and people usually look really sick. People in kidney failure, especially in the beginning stages, don’t usually look sick. I had never heard of dialysis until I got sick. Most people have zero understanding what dialysis even entails, and like you said, they assume you will be fine while you’re on it.

Has your family seen you on dialysis? It’s one thing to think you’re just fine on dialysis, but it may be a wake up call if you to allow them to see you hooked up to a machine that keeps you alive. Then explain to them that dialysis is a temporary solution to a life threatening issue. Maybe invite them to talk with your nephrologist so they understand what kidney failure is doing to your entire body.

If I had an extra kidney, I’d happily share it with you! Wishing you peace, strength, and hope. I am here to tell you that there is always hope and miracles do happen. I am living proof! After I lost my first kidney, I went back on hemo and prepared to die. I knew my body wasn’t going to last 5 years on dialysis while waiting for a deceased donor kidney. After 6 months on dialysis, my husband’s co-worker, whom I had never even met, contacted me to tell me he was halfway through testing to donate his kidney to me! December 26th will be 16 years since the transplant. I encourage you to educate your family about kidney failure, have your family talk to their friends and co-workers about you, and if you’re involved with any community groups (church, etc) share your story with them. You never know who will be touched by your story and want to donate to you. XX

[ShyeLoverDoctor]

”A transplant will give me freedom from dialysis, and let me live a longer life with better quality of life. Dialysis will keep you alive, but it has health issues of its own and are very time consuming Being on dialysis shortens my life span.”

[RhenDutchess123]

Sounds like your Donor is having regrets and wanting to back out of the procedure...it happens alot..Best to let them go and concentrate on another Donor