Stressful Kidney donation dilemma

[ValidPeacock]

Hoping to hear from live kidney donors!

Currently waiting to be included in the next round of paired kidney donors to donate to my husband who is currently on dialysis.

Two of our older adult children have been diagnosed with the same kidney disease as my husband, and I have already made the very hard decision to donate to my husband as how or when the disease may or may not progress in our children is totally unknown, and I may be older and not in such good health if and when they may need a donation. They both have long term partners.

However, our youngest and just adult child has also started displaying symptoms that may or may not be related to the same disease, however does not wish to be tested currently as about to sit exams. Due to their age l am feeling huge guilt, as I do for the older children, as the youngest obviously has no long term partner, and we have found our respective family members extremely reluctant to even discuss potential donation for any of us, which is fair enough as its a difficult choice.

My dilemma is whether go ahead with donating to my husband or for him to remain on the deceased list, potentially " saving" my kidney for our youngest son, who's similar symptoms are appearing at a young age in comparison. I feel whatever choice l make will be wrong for someone else, particularly as donation/ transplant is never a 100% guarantee of long term success for donor or recipient. I am aware that any of the children, if needing a transplant at a younger age, may well need another transplant at least once during their lifetime. Donating anyway is quite stressful and this is adding to that.

Having seen what my husband has endured it breaks my heart to know that at least two of the children may go through the same, and I can't help them. The stress, knowing the scarcity of deceased and living donors, and that my husband and the children may well lead a shortened life, is becoming overwhelming.

Any advice from those in a similar situation would be so welcome.

Very difficult: I would donate to your husband as planned because as you say - you are in a position to and who knows what the future may hold

my hope is that seeing you come through the surgery well will encourage other family to come forward later if there is a need

I would I would go ahead and donate to your husband as planned. He already needs the transplant and you have been confirmed as a match for him. If you pre-emptively save it for your son (or other child), something may happen which could mean you would no longer be able to donate; meaning no-one benefitting from your kidney.

I say this as someone who requires a kidney and is currently going through transplant suitability testing. Both my brother and I will both need transplants, our Mum will be tested as a match for me as my brother is quite a way off needing a transplant, I am much closer. Hopefully she will be a match for me, but I know of matches that have been arranged between husband/wife that couldn’t go ahead at the last minute due to changes in the antibodies.

Just carry on with your original plan . In the future you may have 3 children who need a kidney and how could you choose just one to give it to , I’m not sure the whole partner thing is relevant as your youngest may well have one by the time he’s the age of the elder ones . Best wishes

Are you having counselling as a donor? Might be a good time to explore that if you aren't

there's most likely to be a counselling service attached to the transplant team you're working with - if you haven't already, it may be worth asking them for support with this because it's a horrible position to be in.

I would also continue with donating to your husband. His need is the greatest at the moment and, because of the lifespan of donated kidneys, your child will end up needing one from someone else before too long. Don't waste this massive gift by delaying for a maybe.

we have found our respective family members extremely reluctant to even discuss potential donation for any of us

Do you mean you have actually asked other family members to consider donation? That puts them in a difficult situation if you have done that OP! I'm sorry your DH and children are in this situation, but there should be absolutely no expectation from other family members. I offered to be a live liver donor for my brother. TBH- If I'd been specifically asked, I might have felt pressured and put off by that. Luckily, he didn't need it in the end.

I'd continue helping your husband. You youngest may/may not need a transplant in future, but also, technology changes all the time and by the time they need one- there might be other options. One benefit of knowing now that there is a life limiting heredity condition in your family, your children can decide whether they want to risk having their own children. They might be offered genetic counselling or PGD if they do, depending on the condition x

I agree with pp, I think you have to make this decision based on the information you have right now rather than getting into the complexities of what the future holds, since you cannot possibly predict what will happen.

You should speak to the counselling team at the hospital about this OP. I'm sure anyone who is considering being a donor has access to counselling as part of the package of care. Personally, my DC come top of the list when it comes to something like this. I simply couldn't donate to anyone else if I thought one of my DC might need it.

I would donate to my child but that’s a very personal decision as I would always save my children over my husband in any scenario

Which child , she has 3 potentially all needing a kidney

You don't have 3 kidneys to give away so I'd continue with the plan to donate to your husband. If there was only one child, my kidney would go to them rather than my partner ( and that is a decision I'd fully expect dp to make to).

I didn’t want my husband to be tested to be living donor when I was on dialysis for exactly this reason. If, God forbid, my children have the same issue I want my husband to donate to them.

I have no other relatives that could be tested so went on the waiting list and had a deceased donor transplant in 2021. Clinicans do put pressure on you to provide your own donor so I do understand that feeling of needing to come up with a kidney from somewhere!

whichever had the higher chance of successful donation

so sorry op what a horrible situation.

i would give to DH in this scenario. the children will be able to go to their own families for a donor later.

also, if you speak positively about the experience then maybe other family members will be more willing to donate.

Thank you for the replies, l do appreciate them. I haven't actually asked any family members to consider donation as I would never expect that, it is interesting though that some extended family have been a mixture of do I know what I'm doing/ the risks involved or have read one negative donor experience and it becomes fact, trying to put me off or some others expecting me to donate but being adamant they wouldn't consider it themselves!

And yes I have thought about how on earth would I choose between potentially the three, as clinical need and outcome are impossible to predict. I have had counselling and all the information I can gather, but ultimately it's my choice.

As time draws nearer to possible surgery all the ifs and buts that come with any surgery and nerves are heightened. All I can do l think is deal with one situation at a time and hope that we are all lucky one way or another. Like any parent I cannot bear the thought of any of my children, now matter how old, being seriously unwell or having a limited life. However l must try to be optimistic in that at least there are choices and some options/ treatments, when some have no hope medically at all.

I would only donate to my child.

I would not put my health at risk for my husband* as then the children risk becoming orphans.

But

There is no right or wrong, just what feels right for you. Sending you support, as it is a horrible place to be.

*I do love my husband.