Donation dilemma

[xtiand]

I'm at the point of starting haemodialysis very soon, yesterday a close friend made me the incredible offer to donate one of her kidneys if I would like it. I'm stunned, firstly that she is prepared to offer such a gift and secondly because I don't know what to do. Part of me wants to yell "Yes please" and drag her up to the nearest hospital (I do know it doesn't happen like that and she would have to undergo intensive testing and counseling first) but the saner part of me can see a host of problems ahead, what if she isn't a match, what if she is but I don't think it's the right thing for her to do (her own health, family commitments, stress of success or failure etc), what if one of her family needed a kidney in a few years, what if I say no, will she be offended, and then I don't get offered a cadaver kidney for years (I've been on the list 2 years now), will our friendship last whatever happens - a couple of years ago another friend offered, told me she was being tested, had got her doctor's agreement etc and then I discovered she had done nothing at all and had no intention of donating but was enjoying the attention the offer got her, that was the beginning of the end for our friendship. I've tried to talk to family about it but I'm not getting much understanding or support - I don't mean that unpleasantly but they see the situation as very black and white - I need a kidney, I've been offered one - what's the problem? Am I going crazy?

[Tibbs]

She will have more than enough chances to back out along the way.

If she's offering grab it with both hands. It's a simple as that.

[suz]

Having had 4 people make the offer to donate a kidney to me, I can understand how you are feeling. None of my potential donors were a match so I haven't had to deal with the what ifs had they been. As you say the testing is intensive and both the potential donor and recipient can change their mind right up to the last minute. I think you need to have an honest talk to your friend who has made the offer and tell her how you are feeling and what your concerns are.

Happy for you to PM me if you have any questions.

Suz

[xtiand]

Tibbs, I thought that would be how I would react to an offer but as soon as I thought beyond the first "ooh yes, hurrah a kidney" response I thought about the ramifications for her health and family situation and began worrying. If it was a family member I think I would feel different or if my friends child was older. I'm going to suggest we go together to talk to the live transplant coordinator initially to ensure that my friend understands the full implications of the offer before taking it any further. I know she has plenty of opportunities to change her mind during the process but the process in itself is testing both physically and mentally.

Suz, than you for your understanding, it seems like it should be a simple decision but its definitely not.

[Thumps]

Tibbs, I thought that would be how I would react to an offer but as soon as I thought beyond the first "ooh yes, hurrah a kidney" response I thought about the ramifications for her health and family situation and began worrying. If it was a family member I think I would feel different or if my friends child was older. I'm going to suggest we go together to talk to the live transplant coordinator initially to ensure that my friend understands the full implications of the offer before taking it any further. I know she has plenty of opportunities to change her mind during the process but the process in itself is testing both physically and mentally.

There's a thread I started about 5 years ago along very similar lines when I was trying to choose between my boyfriend and a female friends as a potential donor

If anything, I'd suggest that your friend goes to talk to the Living Donor coordinator *without* you. It will give her the opportunity to have an even more frank conversation than if she was there with you. I don't think my donor and I went to any appointments together through the entire process. When I received offers from friends, I just gave them my LD Coordinator's business card and let them contact her themselves - it just seemed more appropriate.

It *is* an incredibly tough process but also can be incredibly rewarding and strengthening to a friendship. I'd be glad to ask my donor to speak to you if you want a donor's perspective on this. It truly changed BOTH of our lives for the better!

In the end, you must remember - you may be thinking about all those implications (family illness etc) but your friend almost certainly has done already as well.

Good luck!!

[mnm2010]

If anything, I'd suggest that your friend goes to talk to the Living Donor coordinator *without* you. It will give her the opportunity to have an even more frank conversation than if she was there with you. I don't think my donor and I went to any appointments together through the entire process. When I received offers from friends, I just gave them my LD Coordinator's business card and let them contact her themselves - it just seemed more appropriate.

It's funny reading this, as it just goes to show that every relationship between donor and recipient is different. My brother (recipient) came with me to every appointment (obviously some consultations he wasn't allowed in on, but he still sat in the waiting room). I had to come down from South Yorkshire to London so each trip wasn't insignificant. I guess he felt I was giving up my time, so the least he could do was come and keep me company. But maybe as brothers we just knew each other well enough for him to know it wasn't adding pressure to me and I'm grateful he did come. It made it feel more like it was something we were doing together - rather than I was just there to be harvested. Something else to consider is how hospital savvy the donor is. Hospitals are, unfortunately, second nature to you guys. Thankfully until that point I'd never been to one (as a patient) in my life, so it was comforting to have someone around, who at the very least knew their way around. As Thumps indicates having you around might add pressure, or not being around might be construed as being a bit distant/ungrateful. Only really you know your donor. Basically my best advice would be, if in doubt, just ask them...

[Thumps]

Indeed, we can only ever relate our own experiences! My donor and I used to meet up before or after appointments rather than in the hospital (which thankfully I lived a 15 minute walk from) - maybe it was a conscious effort to keep it separate from our friendship early on. We now sometimes do peer support group sessions for other people further "behind" in the process than us, which has been very rewarding!

Only really you know your donor. Basically my best advice would be, if in doubt, just ask them...

*nods* Totally!

[moggz101]

I don't suffer from CKD, so I have no idea what the dilema your faceing feels like. I am on the other side of the CKD fence - my partner is on peratoneal dialysis, and has just made it on the transplant list. He faces a similar dilema with someone who wants to be tested, but he's unsure about it all. We spoke to his transplant co-ordinator, and the living donor co-ordinator, and were assured that the individual would have an interview which would address the concerns that we had, and make sure the person fully understood the whole proess before any final decisons would be made without them ever knowing that we went to speak to them about it. All meetings are treated with the strictest of confidence as well, so if at any point either of you want to drop out - right upto your donor going into the anesthetic room - the transplant team will cancel it without telling the other party why (they create an excuse that covers all parties interests)

I can understand why your family see it as being black and white. Unless you are actualy the one on the list, facing these dilemas, it's very difficult to undertand, and you see everything in a very different light - they want what is best for you, and you want what is best for everyone. It is also sad that you had a bad experience with another friend, but if you have been on the list for a few years now, I bet this is something your close friend has been looking into and mulling over in the lead up to you needing heamo.

Speak to your friend about your concerns and/or speak to your co-ordinator - they will have dealt with many more reservations, and will be able to help you.

Morag

[rheaybou]

Its a very emotional subject. People have all covered what I would say.

Tell the person to visit the Living Donor team without you to talk it over. The process has three test steps and you could stop/not be suitable at each step. Its a massive emotional investment for you both and any family/partners. Your donor, well even you can back out at any stage and I am sure nobody would ever question that!

The hardest part, watching my donor be taken away to surgery. The best bit, the look of pride on his face knowing what he had done had changed lives, not just mine but my GF and Mum's.

Good luck whatever happens and feel proud that someone cares for you and is willing to do this to help change your life.

[MatthewC]

I have to say that I'm impressed - I'm not sure I would have volunteered as a donor for someone other than a relative.

I'd agree that your donor should go and see the team on her own. I actually did nearly all my donor testing without even seeing my brother's team, as my local transplant centre did all my tests, thus saving several trips to London. The first time we went together was the day I first met the surgeon. As has been said, there are plenty of medical hurdles to be overcome, and the donor always has the option of changing her mind without any reason being given, right up to being put under the anaesthetic. The potential recipient won't even be told by the team whether it was a medical reason or just a change of mind. If she herself tells you that she's not a match, well, she tried and you can both feel good about that.

So be encouraged and grateful for her consideration - go for it.

[xtiand]

After much discussion the situation as of now is, she is going to talk to her general practitioner and will discuss with him whether the testing, being or not being a match and possible donation would be likely to cause or hasten a return of depression suffered previously and whether or not she is physically fit enough before seeing the live donation coordinator. If he thinks she is suitable then she will see the coordinator without me. I was and am worried that her health could suffer but realistically I know that neither GP nor transplant team would countenance it if that was likely to be the case. Somehow it would be easier to accept if it was a member of my family though rationally I'm not sure why.

[mnm2010]

If he thinks she is suitable then she will see the coordinator

I realise this probably isn't something you can suggest as it might be construed as trying to push things along a little too eagerly - but knowing what I know now, I'd suggest skipping the GP and going straight to the coordinator. It's fairly likely that the GP has no experience with a patient being a donor. They may know the patient and understand their state of mind, but the reality is they will have little or no experience of how a donation would affect them. This is where the transplant coordinators are the experts. I suspect the GP is much more likely to be cautious, whether appropriate or not. And there is certainly nothing the GP will know that the coordinators won't (or will find out through discussion/ medical records).

And although I have no experience with depression, what I can say is that if anyone ever wanted a boost to their well-being, feeling of self-worth, etc. then you'd have to go along way to find anything better than the satisfaction of donation (not that I'm suggesting it should be considered a 'treatment'). Of course I suppose you have to way up the possibility that things might not go to plan, and how someone with a history of depression would be able to handle that.

And to mirror MatthewC's comment, as a donor to a relative I have to take my hat of to anyone that offers to a non-relative. It takes a whole different kind of person to do that.

I'll keep my fingers crossed for you both.

[purplesarah]

Has your friend had children? I was told it was unwise to consider women of child-bearing age unless they have finished having kids because it could cause problems with their pregnancy.

A friend of mine offered to donate to me six years ago (we were both 20 then) but I wouldn't let her get tested. I thought a cadaveric one would come along within two years but even though it's been over six I'm glad I never took her up on it. Then again, I'm a little biased towards not taking a donated kidney because they still will most likely fail at some point. But it's your call, you need to take into account how quickly your CKD is progressing and if you have responsibilities in life that mean you need to be back on your feet quickly. Just make sure your friend knows all the risks.

[xtiand]

We are all (friend, her husband and I) meeting the transplant coordinator tomorrow, at the coordinators request. I won't be staying for the whole meeting, she told my friend it would take about 2 hours, as I have to go to work and it will allow them some time to talk without me present. I'm still very ambivalent about it but we'll see what happens.