Not to be tested as a tissue match for estranged brother who needs kidney?

[GoodTouchBadTouch]

My husbands brother is 28 and having dialysis (?) 3 times a week, we aren't in contact with him, haven't been for years, no big bust up, he was just a bit of a wanker as a teenager, and identifies as a communist so there was no reason to see him again when we moved. We have only seen his mother twice in 10 years.

My husband still speaks with his mother (the are Scandinavian) and she told him a while ago that its getting to the point where he will need a transplant and my husband straight away said to count him out.

She was horrified and got upset. My husband said he doesn't want to go over to be tested as there is no point and we haven't heard from her for a while but I can see it being brought up again if she isn't a match. (she is diabetic anyway)

Im relieved he feels this way of course, but didn't forbid it or anything. I was reminded by the organ thread and just wondered what you would do? As we are quite cut-off I can only see one point of view. Ours. I hope we aren't being unreasonable... I don't think so

I am happy to give people a leg up, but not an actual leg.

If you 'constantly row' with your brother because he dared to get a degree and threaten to ruin his graduation because you are politically opposed to higher education, that sounds pretty damn toxic to me.

Morloth

Piglet I wasn't judging others. My initial response was to Vellimentary. Who was.

And also to want to give bits to others, don't forget.

If your DH donates a kidney that leaves him with only one. Now living with one kidney is not necessarily an issue (my BIL has only one, lost the other to disease many years ago and gets on OK) However, if your DH subsequently develops kidney disease or has an injury that necessitates the removal of a kidney then he is immediately put in a life threatening situation.

Do you know anything about the reason for the brother's kidney disease? Could it be something genetic? Is your DH even remotely at risk of the same thing happening?

My feelings on live organ donation are analogous to my beliefs about abortion i.e. that adult human beings should have absolute autonomy over their own bodies. Nobody has the right to determine what happens to your body except you. Those who put moral/emotional/societal/legal pressure on anyone to give up this right deserve to be condemned to whichever hell is most appropriate.

Can I clear up some myths flying round on this thread:

Firstly, you don't have to match ? so getting tested just in case you match is near irrelevant these days. I had an ABO (none matching transplant) as DH and I had no relevant 'markers'. It still works.

Secondly, it is not a quick 'lets donate a kidney'. It took us a year from start to finish ? ECG's, Cat scans blood tests, urine tests and many more. Also the 'big' test ? an interview alone with an independent consultant who asks you if you truly want to do it ? what if you die, become ill because of donation, what if rhe donated kidney doesn't take etc. It isnt an easy process at all. And if the Human Tissue and Donation Authority suspect any pressure is placed on the donor they won't allow it to go ahead.

Thirdly, it is major bloody surgery ? DH recovered quicker than I did. Twelve weeks before i could walk to the shops without collapsing with exhaustion. Also they tore my renal artery during surgery. I had to be given a lot of blood to recover as i nearly didnt make it.

They ask you before surgery ? what shall we tell the recipient if it goes wrong. I said tell him nothing as he wont go through with it otherwise, so they didnt say a word.

Finally, it is a huge toll emotionally on both the donor and recipient. I sat in my firsy year check up (as donors get yearly monitoring too) and sobbed like a baby as DH basically worked all the time once well again, to get over his journey of renal failure ? he worked very long hours just to escape what he'd been through, which left me feeling so isolated and alone.

We are fine now, and there are no restrictions to my health for travel, food or alcohol purposes. But it reallt pisses me off when people make out that its easy and they'd do it in a heartbeat, as that is so far from my experience of donating.

we always end up on these threads

I agree it is major and the pros and cons need to be out there for all to see

Reindeer, what a moving post.

I think it's hard to imagine how you will feel when your brother dies if you haven't actually lost a close relative. My brother died very suddenly 18 months ago aged 42 and I could never had anticipated how much it would hurt. We never had a falling out and did meet a few times a year but I would never have thought of us as especially close. I know for a fact now that if I had any warning of it and could have done anything to prevent it with as good odds as a live donor I would definitely do it. Again seeing how difficult it is for my parents I can't imagine saying to them I wouldn't do it. But that's in retrospect, I have no idea how if I would feel as strongly without that perspective

I agree Noddy but not even the hospital staff wefe honest about it ? they told me afterwards that if they were honest less people would do live donations, and live donations are more likely to last than cadaver kidneys.

I would wholeheartedly support anyone who genuinzly wanted to donate ? but family relations shouldn't force someone to do so.

Sorry for all the typos, am on my phone.

Im really surprised at all the reasonable people who can see why my husband refuses. Ill definitely show him this thread. A lot of the things written I know confirm his choice. Thanks for being so honest.

I cant help but disregard the people who "would give a kidney to a stranger" - Sorry but I just don't believe you.. so easy to say. And brother IS a stranger.

We definitely don't want a relationship with him, (or the mother either really) but of course that doesn't mean we wish him dead! Emotional blackmail from strangers on the internet is not going to make him change his mind?
Some of the ridiculous things written just make me laugh. I should LTB? Really? So I should take my children from a wonderful father, because he isn't willing to risk his life for a stranger? If you have such a fragile relationship with your husband I feel sorry for you, and perhaps YOU should LTB.

Also the poster who wouldn't want to be friends with such cold people as us: You aren't the sort of friend we would want, thanks. Same goes for his mother.

Ive said before, but its not "let him die, he is a communist" curlew READ THE THREAD!!

DH and I are 31, and having child number 3. We got married 10 years ago (in Scandinavia) and had our first child there - there was plenty of time for reconciliation then no? All we got was nasty emails with reasons why people like us were to blame for all the problems in the modern world.
Just the fact that he would need to travel and recover abroad is a huge problem, who would help me with the children?

Thanks again for your opinions and stories. Really useful to get the perspective of the experts and people who have had transplants.

My brother was amazing he really did just recover super fast. The whole situation with my mother was different and she would never talk about it when I was a teenager. But she has 4 children and sees none of us really and she saw my illness as another inconvenience she had to sort out . The psychological effects are sometimes the hardest . Your operation sounds traumatic you are really selfless and brave and I admire anyone who does this as it is HUGE.

Oh sorry saggy. Its not to say I am a heartless cow, but a kidney would be different. I would donate to my immediate family, but outside family who I don't see at all, iam not sure, certainly not someone who has been toxic towards me and violent Noway!

Good dont feel bad, your dh has every right to refuse

Reindeer that is both sad and lovely at the same time. I hope anyone who is glibly saying they would donate to a stranger reads it and thinks again.
From what I gather from reading that, it would be almost irresponsible of DH in our circumstances to allow himself to be bullied into anything. It clearly isn't over after the operation.

It sounds like he would fall at the "big interview" anyway. The surgeon would be able to see he doesn't have a fraction of the feelings you do for your DH and that is bound to cause problems.

I imagine if he did it, things would go back to the status quo, and he could be left with ill health, wondering why he did it.

Thank you piglet. Thanks for all your posts, its so easy to say "Oh but Id couldn't let a relative die" and sit back feeling all holy. I appreciate the honesty

Exactly words are so easy to type, but faced with the reality and a very long and testing process, would you?

A friend of mine donated a kidney to one of his friends. He was ill for a long time afterwards, including at our wedding. He was slow, tired, in pain and looking prematurely aged. All of that has now improved, but it was very hard.

Even the most close and loving of siblings could not expect another sibling (and parent of young children) to do that for them. Apart from parents donating to their children, donation is always a gift not an obligation. There are many very glib posts on this thread making out it is otherwise.

Good Obviously you don't need the opinions of internet strangers to decide how you and your DH feel about it, but fwiw I think that not being tested is the only reasonable thing to do here. If he already knows he doesn't genuinely want to do it (for whatever reason), then it is wrong to dangle a possible donation in front of his family, however difficult they have been. They need to rule it out now so they can look at other options.

And all the other circumstances - the estrangement, the health risks, the fact that lots of overseas travel and long recovery are involved - are perfectly good reasons not to want to do it. I can't believe any transplant team would want someone to be coerced into the the transplant process like this.

Exactly he should continue to say no

OP it's always his body and your choice, people will give their own opinions and see their own situations but this is your DH's decision and so long as you support him then what does it matter which it is.

I think people should donate after death, not living unless they choose to. I really think more people signing up to the organ donation register would lower the need for living donors and would mean less no possible repercussions on the donors.

"I hope anyone who is glibly saying they would donate to a stranger reads it and thinks again."

OP, your DH's decision is his and his alone; I don't judge him for it.

But please don't think I was being at all glib when I said I would give my kidney to a stranger. I wasn't. And reindeer's post hasn't changed my opinion one bit.

Of course I don't expect that a complete random stranger will walk up to me on the street one day and ask for one; I would assume that for me to be asked in the first place or to be aware that someone needs a new kidney, they would have to be someone I know. Nor would I be likely to sign up for a live organ donor register.

But if I were asked, no matter who (repeat excluding evil people disclaimer), I do honestly believe that I would give a kidney if that person would die without it.

How could I live with myself otherwise?

I would have thought the salient point here is that you have small children, to whom you have a much higher obligation than to a sibling (let alone a stranger). I would feel entitled to object loudly to DH donating a major organ to anyone but one of our children, for the same reason that I gave up my small plane licence when I got pg. When we finally got DC we made them a quite explicit promise not to take unnecessary risks.