No to transplant

[Jfkh30]

As anyone ever said ‘no’ turned down a kidney transplant? Why?

[Rmatthew]

Hi! I said no to a transplant a couple of years ago (I was on dialysis from age 15-27), I said no to a kidney because I was going through a lot of mental health problems, and it took me a long time to mentally prepare myself to go through with it, first time being offered a kidney I went to the hospital, panic attacks, breathlessness and wasn’t ready. I sorted my mental health enough to finally recover a kidney (August 2020) and it was the best decision I ever made.

I thought I was doing fine on dialysis, but now life is just so much more precious and I’m angry I didn’t do it sooner, guess everything happens for a reason.

This is just my take on transplant, it was hard at first for me post transplant but I would go through it again in a heartbeat for the gift I was given.

Hope you are doing well.

[Jfkh30 in reply to Rmatthew]

Thank your Rmatthew for your answer. It definitely gives some insight into how some patients may feel… I am happy to hear you came around. My husband had 2 failed transplants and now is considering not going through with a 3rd if ever the opportunity arises.

[Rmatthew in reply to Jfkh30]

I hope everything works out for him, I know how hard things can be living with kidney failure. Sending all my love.

[frebusmaxwell]

I am approved for a living kidney donor only, not a deceased one due to various physical issues. Mayo's transplant committee deemed me not healthy or strong enough to safely receive one from someone who died.

[Jfkh30 in reply to frebusmaxwell]

I am sorry to hear this frebusmaxwell . I realizing that could be so many different reasons why someone would turn down a transplant. My husband is contemplating stopping dialysis and even though a big part of me understands there is a part of me that says is it reason enough ? His based on emotional & spiritual exhaustion , loss of hope since both his transplants were very complicated and hard to keep together with accumulated guilt over the last 17 years. We are married 22 so he has been ill most of our lives. I think he feels that has now become a burden economically too since he is unable to work. I just think it’s so sad that he seen more reasons to leave then to stay . He has no faith in a3rd transplant now. It’s absolutely excruciating to witness so much physical and emotional suffering and yet …Thanks to all for listening

[Darlenia in reply to Jfkh30]

So very sorry to hear this. As one caregiver to another, I feel your pain and know your fears. Holding everything together can be beyond tough. Sending hugs your way.

[Jfkh30 in reply to Darlenia]

Darlenia .. thanks for your words of comfort. the journey of a caregiver is indeed very challenging 😥

[FThomp in reply to Jfkh30]

Sometimes people are ready to let go and not be in pain anymore. They still love their partners and family and friends but personally, it can get to the point where they are just exhausted or feel like they are a burden. It’s like you love everyone else in your life and don’t want to bring them down.

I know loved ones don’t see it that way but mentally, from an ill persons perspective, that can be how they see it sometimes :/

[Jfkh30 in reply to FThomp]

Thank you so much FThomp for frank reply. It’s the way I understand it. People who contemplate to ‘ get off the stage’ do it not because they want to die but because they don’t want to live as they are living anymore.. it’s so very difficult, so painful to witness ..

[alport45]

I asked my transplant center to make me inactive on the list. I am 77 years old; have been on dialysis for 1 year. I had breast cancer twice and worry that immune suppressing drugs would allow any stray cancer cells to pop up again. I'm doing well on PD dialysis at home. I just don't want the major surgery.

[Jfkh30 in reply to alport45]

Wow .. thanks alport45 for sharing your story. Praying you have many many cancer free years!

[Highgfr in reply to alport45]

Bless you heart.❤️ So glad you are dong well on PD. Trying to make that call too but am trying to get input as to how well PD works and is it challenging to do at home? Hard to live with and infection risks!! Anything you can share would be so appreciated. Thank you so much! God bless!

[Beachgirl32]

I was call offer a kidney and I was so excited then 30 minutes later was called the transplant team had to turn it down in my behalf cause of my high antibodies they said it wouldn’t work That when I felt out my antibodies were high I don’t know why they couldn’t of check that before they call me so there could be all kinds of reason a kidney is turn down . Hope all works out for your husband .

[Jfkh30 in reply to Beachgirl32]

Thank you Beachgirl32 . Yes it’s quite a bugger these antibodies. I hope it works out for you too.

[Blackknight1989]

Happens often…here is ablik

[Blackknight1989 in reply to Blackknight1989]

Sorry . Link..

[Blackknight1989]

kidney.org/news/nkf-and-asn.... Sometime the “Busineend of my 9mm look like it should go in my mouth…lol. I know…not funny. Still?

[Jfkh30 in reply to Blackknight1989]

😔

[Blackknight1989 in reply to Jfkh30]

You still around? Update if you are willing.

[Jfkh30 in reply to Blackknight1989]

Hi Blackknight1989

Yes we still around. Thanks for asking. I am not sure what to say accept that my husband is still considering NOT going through a transplant.. if he ever makes the list. Not on it, still awaiting anti body tests. Perhaps the future will tell …

[Blackknight1989 in reply to Jfkh30]

God Bless you and he. I understand as I am now totally disabled and feel as if I’m a burden. But I don’t believe it’s over till fat lady sings so I drive on the best I can, I mean I literally drive in my chair…lol! Truly I get it. I am sure you know he is clinically depressed and would probably benefit from some help but I understand the reluctance to go that path as well. Unsure as to where you are but if in the US there are significant financial resources available to help with the entire transplant process I’d be happy to link if interested. Thanks for the update and as I am a believer I’ll pray for you and your husband. I believe the Great Healer will provide the answer but understand and respect your right not to believe the same. God’s blessings to you both.

[horsie63]

My dad had heart problems (couple of bypasses, aFib, etc). worked all his life, was a retired Msgt from the Air Force, worked couple of other jobs after retiring, smart as all hell. I watched him deteriorate for over 10 years until he finally had a final heart attack in May 2020. His father had alzheimers and his mother died of lung cancer on hospice. Watching a loved one suffer is the hardest thing ever. I feel strongly that if what you have is terminal you should have the choice to die peacefully. I know it hurts but I'd would rather not suffer. If I get to the point where my choices are limited I would like to go on my own terms.

[Jfkh30 in reply to horsie63]

Thanks @horsie63 for your input . I tend to agree that when a chronically I’ll person weighs the odds so to speak … that they should have the choice to ‘ get of stage’ and the play.

My husband has been told after receiving the antibody test that he has a 2% chance of being transplanted. Day by day the financial strain is also pulling him down .. my family in general.

Very few people actually talk about the financial strain chronic illness places on a family…