Living Kidney Donation

Diane:

Hi Jane,
Thank you for reading my story and listening to The Choice. I am so thrilled that it has inspired you to put yourself forward to donate. Wow … I am just so chuffed!! Little did I know that donating a kidney would not end there but would help other people wanting to do the same. I know one thing, donating a kidney was the best thing I have ever done and ever will. I cannot think of any other way that I could help someone else in such a huge and positive way.

My emotions. Gosh … okay first off The Choice with Michael Buerk. There was over 1.5 hours of recording edited down to 25 minutes but it was good to do the programme as it made me dig even deeper into my emotions and I learned a lot about myself and as to why I donated.

I am the sort of person who cannot deal with some emotions very well. I was concerned about donating a kidney in case I had to face some negative emotions that then stressed me out. For example telling other people. I knew that some people would not just be against me doing this but would make it verbally clear that they were and give me a hard time. That would not have stopped me from donating but it would have made me very miserable and stressed out and feeling guilty and those feelings would not pass easily. So I took the decision to only tell my son and ex husband and not to tell anyone else rather than face the negative attitudes. I only wanted people who could support me and be positive to know. Apart from which, to be honest, it was nobodies business but mine!

I also looked into the emotions of “how would I feel if …” If the transplant failed. This can and does happen. I felt I would deal okay with that, I would feel sad for the person, but I had done my part, given the kidney everything else was then out of my hands, but at least I had tried and also it must give hope to the recipient that there are kidneys out there for them. So no, I did not think I would be affected badly by that. That actually was one of the questions the psychologist asked me.

….. what if something did go wrong with my operation? Well I had 110% confidence in the transplant team. If I had any concerns at all, I would not have proceeded. I had anaesthetic before which didn’t react badly and had no reason to believe something would go wrong. But things do. I know people who have had things go wrong, through no fault of anyones. I just prayed my operation went well and that if something did go wrong, I would cope as best I could. I was not sure of the emotions that would go with all that but I hope my belief in God and faith in Him would have got me through. I thnk my concerns would have been for my immediate family who I would have put through a really bad time. So I would have felt bad and guilty for them.

Then there was the big question – who would the kidney go to? Would I mind if it went to a serial killer? a paedophile? some person that most of us would think a really terrible person? What if after the donation I found out my kidney went to someone like that? I thought long and hard before deciding to donate my kidney. I just wanted to give it to someone, anyone! If a “bad” person happened to be the one who got my kidney then I would accept that as I gave without condition. I could not have given my kidney if I was concerned about who it went to as that could have led to me feeling guilty and that is one emotion that is hard to live with. At the end of the day I just wanted to help, no conditions attached. If I felt deep down I did have conditions, even though I was not able to do anything about them, then I would not have donated. At the end of the day I had to think of myself as well as the recipient.

What if after the donation the recipient wanted to meet me? I decided I would not have wanted that. Noone can predict what the reaction or long term feelings would be. I know a couple of people in the USA who met their recipients and later regretted it. One of them abused their lifestyle and the donor started to begrudge them the kidney! The other, was a very happily married person who then when better met someone and ran off with them leaving small children behind. The donor felt guilty as though they had contributed towards the breakup, even though they hadn’t, and it affected them quite badly. Also I didn’t want the recipient to feel beholden to me for ever and feel they had to send a Christmas card each year or feel they owed me or had to be my friend. I would have hated that. It would have been a false friendship. Also what if I really did not like the person or they me? lol …. there were too many unpredictables in meeting the recipient. I didn’t want the potential bad emotions that could go with it. Apart from which I did not donate wanting to know who I donated to.

Well there you go, lol. Those were the major emotional concerns I had. Past experience has taught me I am not good with bad emotions and the last thing I wanted was to meet some situation and not be prepared for it. As it happened, as you will have heard on The Choice, that did indeed happen. I was not prepared for the first recipient not to be a match and that did affect me quite badly. I cried off an on for the next few days and then I could not think or speak about it without welling up etc. Only now can I think about it and not cry. I actually think talking about it on The Choice was the release I needed. We had to stop recording while I had a tearful session. The second recipient who also was not a match did not affect me as I was prepared for it.

So those were the sort of things I spent a long while going over in my mind and trying to visualise all possible scenarios and working out how I would deal/feel about them. I just wanted to be fully prepared for both the physical and emotional sides of donating.

Hope that helps. Anything else you want to ask, please do. I am an open book.

All the best, and would love to hear how you get on?
Di
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Diane:

Hi Jane,
Sorry for the delay in replying, to be honest, I forgot!!! blame it on my age.

As for my son. I waited until I had had a couple of hospital appointments to make sure there was at least the possibility I might donate. He already knew that a friend of mine had donated in America, so the whole idea was not alien to him. He also knew I was fully supportive of my friend. I told my son what I wanted to do. I gave him the facts and he asked questions. I made it perfectly clear though, that if he was really against me doing this then I would not do it. My family did and always will come first before a stranger! I told him it was something I felt I really wanted to do, but would not be downhearted if I did not. There were plenty of other things I could do to help people. So no I did not have to win him around. Although later he did have some concerns and we agreed to meet at the weekend to discuss them. At that point he said he found the answers he wanted and was fine for me to go ahead and he was really proud of me. It was not until way after the donation I actually asked him what his concerns were, and he said he was concerned that my thyroid problem might be affected, but that was not the case.

As for my reasons for donating. Yes, the main reason was because I really wanted to help someone who was having difficulty in getting the help (transplant) and it was something i knew I was able to do. Because of that I could not stand back and not donate. But later deeply examining my whole life experiences etc during conversations with the producer of The Choice I questioned why I felt comfortable doing this. Had non directed donation been possible say 20 years previously, would I have donated? I think the answer would have been “no” becaues my life was busy, I had a child who was dependant upon me and it would have been something I would have on my list to “do later” when life permitted. Also my belief in God, which came later in life, made me a much stronger person inside and less selfish perhaps. So I am not even sure that years ago I would have even considered donating, except to a relative. So I suppose what I made by my earlier comment to you, was that my life experiences have contributed greatly to my decision to donate as they have made me the person I am now. It was examiing those life experiences that made me realise the good effect they had on me, even though the experiences were ones I would never wish to repeat as took me into a very dark place.

Also my thyroid came into it from the point of view that I was then unable to do anything really physical, or anything that demanded long term committment. So many of the ways I used to help people had to stop as I was letting them down due to my illness. Here was something [kidney donation] that I could do that would take no physical exertions or long term committment but it would totally change someone’s life. I also felt if this was the very last thing I did to ever really help anyone, I would be more than content with then living a non-helping life due to my condition.

Not sure if that explains it to you or not?

Please ask anything and will do my best to reply.

Di
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Diane:

Hi Jane,
No problem. I cannot comment on other people’s decisions. I only know reasoning behind mine. I suppose they feel they take more risks in life day to day that donating a kidney is a lesser risk. The risk of dying from a hip replacement is l:1000 – kidney donation 1:3000 yet no one tries to talk people out of having a hip replacement. I suppose because it is for their benefit. I don’t think anyone has died from donating a kidney. Recipients, sadly, have died after receiving a kidney. Not sure if any altruistic recipients have, but I know living donor recipients have. Two I know of were from blood clots but several weeks after the transplant.

Let me know how you get on. I love hearing from potential donors and how things are progressing. I have five donors at the moment going through evaluation and I get excited for them hearing how they are getting closer and closer. I believe one hospital has a baglog at the moment with over 15 donors going through the evaluation!
Di
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Diane:

Hi Mathew,
I am only just beginning to learn that blood clots can be more common than we think in abdominal/pelvic operations. As you say, one would think a GP somehow would be immune!! But no one is. How sad.

Yes your cousin is very brave. I always say it is much harder to donate to a relative than to a stranger, no emotional ties with a stranger.

I do hope you get another kidney soon. Must be really hard to have been given a second chance then to have to go back to dialysis again. But I suppose at least you know you are on the list and somewhere … sometime … there will be another kidney.

God Bless and thanks
Di
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