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Altruistic Living Kidney Donation

Have you ever thought of giving your kidney to someone – when you are still living? It is called Living Kidney Donation. You can donate to family, friend, work colleage or someone you just heard about.

You can also donate to a total stranger. Someone you have never met, never heard of and never likely to know much if anything about. This is called Altruistic (non-directed) donation.

If you would like to know more about the procedure to become a living donor then please check out the links on the left of this page starting with Kidney Donor Evaluation begins. If you follow through the posts it will take you through the whole evaluation process including getting HTA permission; finding a recipient; the operation and recovery process. You can also learn more by clicking on the links at the top of the page including why I became an altruistic living donor.

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59 Responses to “Become a Living Kidney Donor – Giving a Kidney is a wonderful thing to do”

  • George:

    Why would you want to donate to a stranger? Save it and give it to someone you know. How selfish! what if family need kidney, you would have given yours away to someone you dont even know. Stupid if you ask me!!! Sorry but am sitting here mouth open wondering what you are at. no wonder only a few donations so far, people not so crazy as you.

  • Diane:

    Hi George,
    Thanks for finding my website and posting your thoughts. I am glad you posted because your thoughts are those of quite a few people. Generally not having the full picture will often lead people to wrong conclusions.

    I will address some of your points. When deciding to donate my kidney to a stranger, I looked long and hard at the possibility of maybe a family member needing a kidney. Now, there are a variety of reasons as to why someone may need a kidney transplant. They can be born with kidney disease, or it can be hereditary. Bad lifestyle can lead to a type of diabetes which in turn can lead to kidney failure. As far as my family is concerned none of the above really apply. No one was born with kidney problems. There is no known hypertension or diabetes in the family. We all have a healthy lifestyle eating sensible foods and getting enough excersise. The chances of any family member every requiring a kidney would be extremely unlikely. Apart from that, just because I am related to a family member does not mean I am compatible with them when it comes to a transplant. Often I hear of cases where close family cannot donate as they are not compatible. So the chances of me ever knowing anyone who would need a kidney was so unlikely as not to really be part of the larger picture.

    But what I did know was that there were thousands of people out there that did need a kidney. I may not have known them personally, but I knew some of them would die without a kidney; others would spend years of dialysis (type of life support machine). Dialysis is not pleasant, many complications can arise from it and the person and their family can really struggle to have any sort of decent life at all. I was in a position where I knew I could help someone have a second chance at a good life and I wanted to do that. So I did.

    Because I knew I could help someone by giving them my kidney and because the procedure and risks were more than acceptable, to me I would have been selfish not to have given my kidney. I did not want to wait until I died then “hope” my kidneys could help someone. There are no guarantess that organs after death are useable. I wanted to make sure at least one person got helped now.

    The reason there have been so few altruistic donations in this country so far, George, is because it was only possible as from late 2006 to do this. There was no framework or guidelines in position to allow this type of donation. You could donate to someone you knew, just not to a stranger. Because the whole process can take the best part of a year or longer, it takes a while for word to get around that it can now be done.

    In the first full year of altruistic donations (2007/08) 10 people were approved to donate to a stranger. In 2008/9 there were 15, in 2009/10 there were 23 and in 2010/11 there were 40. As you can see, although small in numbers the increase in donations is doubling and 2011/12 will be even better.

    I can fully understand people not wanting to do this. But I hope you can understand more now why some people do want to do this and why it is not so selfish or scary or crazy or stupid as some people think.

    All the best
    Di

  • George:

    I have just heard your The Choice radio programme as detailed in the posting below. I can hear you are quite emotional about the whole concept of giving a kidney. I cannot say I can see it myself, but respect your thoughts and feelings on the matter. I still think you are crazy (but in a nice way) and I wish you luck in the future. The person who got your kidney is a very lucky person I hope they take care of it. Charlie wasn’t it?!

    Couldn’t you think of any other way to help people than going through an operation. That is what I don’t understand. Why give a kidney when there are so many other ways to help that do not involve risking yourself.

  • Diane:

    Hello George,
    How kind of you to listen to the programme and I hope you understood more how I feel about the whole subject of organ donation. I do feel very passionate about organ donation, whether living donation or cadaver donation. More people should sign the organ donor register. If only they could see and speak to people on dialysis who are waiting for a kidney I am sure it would affect them emotionally.

    lol ! yes it was called Charlie!

    George, it wasnt a matter of trying to think of a way to help someone and so I picked this way. Also we dont only have to help in one way, we can help in as many ways as we are physically capable of. I help where I can but when I heard that by giving a kidney to someone I could make such a huge difference in their life it was something that I needed to look into more. I cannot think of anything else that I am capable of doing that would make such a huge difference to someone and to their family. The older I get the less I can do, especially as I have an under active thyroid which controls my daily activity and limits my ability to do things. So giving a kidney was ideal for me to do and the more I looked into it the more passionate I became about helping someone off dialyis and back into a normal life.

    I dont have any family at home, so I had no dependants who might have been affected by my donating. I was in just the right time of my life to do this. Had I still had children at home I would not have donated. My family does and always will come first as there would have been plenty of time once they had grown up to do this. But my family was grown up and left home years ago.

    I appreciate this is not for everyone to do. Heck you would never get me running a marathon, yet those that do train for months and months and earn lots of money for charities, they do marvellous work, and can keep on running marathons. So you see, what one person feels comfortable with is not to someone elses taste. I had no fear of hospitals, I had 100%+ faith in the doctors, surgeons, nurses etc. If during the evaluation process I had any doubts, then I would have walked away. Donating my kidney was not something I was going to do regardless ….. as you heard on The Choice I spent a long long time examining all aspects of this including the moral aspects and emotional issues that may arise. I also spent a long time examining “me” to make sure I was doing this for the right reasons. I must have spent over a year coming to this decision to donate.

    Thank you for posting your question and I hope you can understand a bit more about why I and many others have done this. We are not crazy or stupid. I don’t believe we are on this earth to live lives just concentrating on our own little circle. We are all brothers and sisters on this earth and I certainly cannot stand by and not help someone, if I know it is within my capability to help them.

    All the best, enjoy rest of weekend, meant to be sunny. don’t blink or you may miss it.
    Di

  • Anon!:

    George,
    Everyday we take risks, we could be involved in a fatal accident each time we go out, but we still do it! The risks of donating a kidney are small, potential donors are thoroughly screened – that and their familys medical history, and they have to see a physchiatrist to make sure they are not insane! People can live a normal life with just one kidney.
    Many people are on dialysis, they have to watch their diet and restrict the amount of fluid they can take each day, dialysis takes place several times a week for several hours at each time, how restricting that must be.
    Transplants are not a cure, recipients hopefully are able to live a better quality of life after a transplant.
    I, like Diane, and others donated my kidney to a stranger, if ever I happen to need a kidney in the future then I will just await my turn like thousands are doing each day.

  • Jackie:

    Hi

    I’m glad i came across this site whilst researching kidney donation. My mum is in danger of kidney failure and may be facing dialysis so it is my natural response to look into donating one of mine. My mum is diabetic and so am i so im not sure if the medical team will let me do it but i know its something i really want to do. I love my mum to bits and want to keep her as long as i can.

    I’m so glad that there are people like you Di out there taking part in unselfish acts of great kindness. Without you and others like you many people would be facing life on dialysis and we know how miserable that would be.

    Reading some of the messages on here has so far filled me with hope and optimism and given me some courage to go ahead and (hopefully) donate.

    Thank you.

    Jackie

  • Gregory W.:

    hello,
    Am Gregory ,64yrs of age.
    May i heartily thank God for a successful kidney transplant and also all thanks to the young man whom allocated and helped me find a donor that has helped my life.i came to understand that there are millions of people out there that are really willing to help a life but are greatly disposed due to inability to reach out the information to the world due their location.It started as a joke and i thought it was but i explored with him,today,am better.he has really created a chain and helped willing disposed donors to reach the world.i urge and advice my fellow people out there on the waiting list and dialysis to sit up and explore out by themselves and God will see them through.
    Thanks.

  • Diane:

    Hello Gregory,
    How wonderful you got a transplant. I am just so pleased for you. Being part of a chain also is fantastic. It is amazing what can be done. We must never give up hope and I know my faith in the Lord has taken be down paths I would never have normally chosen but they have always been the correct paths.

    How lovely to wake up to reading this.

    I wish you well for the future. Spread your good news. If you woul care to elaborate on your story, I can feature it so many people can read and get hope or get inspired. If so just contact via the contact page. Link top right of this page.

    God Bless
    Di
    xx

  • Diane:

    Jackie,
    Hi, thanks for finding this site and for posting.

    I am so sorry about your mother – a worrying time for you all. If you have diabetes leaving you with one kidney might put you at further risk so I am not sure about you donating, really only your local transplant unit can answer that one. If your mothers kidney problems are due to her diabetes then sometimes they like to do a kidney and pancreatic transplant at same time as then the diabetes goes. Can you give your transplant centre a ring on Monday and ask them about the possibility of you donating? At least you will know one way or another as maybe not so clear cut as a yes or no?

    I hope you will post back and let us know what you find out. But above all .. have hope!! Hope is something we all need in our lives regardless of the problem facing us. Even if your mother does go on dialysis somewhere out there will be a kidney, whether it is yours or someone else’s, you both just need to be strong and to keep Hope in your Heart. Hope helps keep you strong.

    Please let us know what you find out. If you wish at any point to contact me privately then please use the contact form on this site (link top right of page) and I can then let you have my email address.

    All the best
    Di
    xx

  • Diane:

    Hi Samantha,
    I actually donated, I didn’t receive a transplant. Information given is about altruistic donation.

    Thanks
    Di

  • Samantha Souffle:

    Thank you for posting such a clear and informative piece about the procedure and you are very lucky to have received a transplant. This is very real and very scary and only through people willing to donate their organs (organ donation) can we truly help each other.

  • Mick:

    Hello there,
    Just wanted to say my faith in the human race has been totally restored. The news is so often full of the horrors of human nature and not the goodness. I remember way back when the 10’oclock news always ended on a light note to send us all to bed with a smile instead of a tear.

    I do dread operations so donating my kidney could not be an option. Having readheard your story I wish it could be an option.

    I do know someone who did donate to a stranger. A member of our church did end of last year. I didn’t think too much of it at the time then heard your radio programme with Michael Buerke and it made me sit up. You are so passionate about what you did it was truly inspiring.

    Well done to everyone who has donated regardless who to.

    I have signed the donor register though.

    Mick, Poole, Dorset.

  • Diane:

    Hello Mick,
    Sorry for late response. I remember well the late night news when a really light hearted piece would end the day, it did seem to dilute all the bad stories for sure.

    Donating a kidney is not for everyone. One has to be totally at ease with the whole process. Donating is just one of many ways in which we can help people.

    I am delighted you heard the radio programme, I know I enjoyed making it and even more so that many people have been inspired by it and have put themselves forward to donate, how wonderful is that.

    I do feel very passionate about organ donation. Not just living donation. If only everyone would sign the organ donor register many more lives could be saved. It takes so little effort to sign up – heck, what a legacy to leave behind for your kids, that people did something really great by giving someone their life back – just takes a minute or so to sign up. More than one life can be saved too.

    Thank you for posting and please spread the word.

    All the best
    Di
    x

  • Andy:

    What an inspiration you are. I spent most of the weekend working my way through your blog. My wife died four years ago from kidney failure. None of us were compatible with her for a transplant. I know at the time she would have wished I gave my kidney to someone and it has brought back the conversations we used to have while reading your blog. I am quite emotional typing this as I know I want to donate a kidney to someone. I would not wish anyone to lose someone like I did because there was not a kidney available. There then came a stage when my wife was too ill for a transplant. If I can give my kidney and help save someone then there is one family less to grieve. You have answered so many questions I had regarding donating. The emotional aspect of what I may face also concerns me and listening to your radio programme showed me some questions I needed to know answers to. Would you mind if I contacted you direct and talked over the donation process.

    You seem so passionate about your donation. At times you were quite emotional about it. It must have meant a lot to you to donate, such an inspiration you really are.

    God Bless you and thank you.

    Andy R.

  • Diane:

    Hi Andy,
    Thank you so much for posting. I am sorry to hear about your wife, I cannot imagine how devastating that must have been. It is accounts like yours that should make people open their eyes and if they have not, to go and sign the organ donor register.

    It took me about a year to come to the final decision to donate. Although I had already made up my mind I wanted to right at the start, I knew there were many questions about the whole process I needed to find answers to. Not just the obvious ones of the operation, recovery and living with one kidney etc but the moral and emotional aspect as well especially if family involved. I needed to make sure I would be able to deal emotionally with whatever the donation process threw at me. So it was not a 2 minute decision to do this. It isn’t just the physical aspect but emotional as well that needs addressing. This is why I was so excited to do The Choice programme with Michael Buerk as it gave me a chance to examine aspects of the donation process that don’t really get much airing. So yes, it is good you are thinking about the emotional side as well.

    Of course I don’t mind if you contact me, I will be delighted to be able to help you any way I can. If you use the contact form, link top right of this page, and send me the email address you would like me to use, then I will get back to you asap.

    I am so thrilled my account of donation has inspired you to rethink the donation process. Look forward to hearing from you.

    Di
    x
    < °)))><

  • joe:

    george, my mum has kidney failure and has so since she was 18, she is now 45, i am not trying to cause an argument but i feel very annoyed of how selfish you sound, people all around the world are in need of donations, if you gained kidney failure (i wouldnt wish this on anyone) but noone in your family was a match and you found a stranger who had a match and they turned round and said your a stranger im not giving it you im not crazy, you world would fall from beneth your feet, please consider what your saying before you do !

  • George:

    Joe,
    I appreciate your comments and understand perfectly from your point of view, and of course your mum’s. I so pray she get’s a kidney soon whether from a cadaver or live person regardless of who they are. When I first posted, that was posting with ignorance not knowing much about donating a kidney when you ar alive. I did seem a crazy thing to do (crazy in a nice way as I said earlier), to risk your own life for someone you don’t know. Diane put me straight and gave an excellent explanation of why and how etc.

    I don’t quite see your point of view though, as surely if you found a stranger that was a match they would have had to have put themselves through the evaluation, found a recipient then turned round and said no. Yes that would be unbelievably cruel. I don’t think I have heard of anyone that has done that and even “I” would hold my hands up in horror. I don’t think I ever said that having been evaluated and found a recipient that you did not know that one should then back out? I cannot even find anything that sounds similar to that. So I think somewhere you have greatly misinterpreted what I have said.

    I still find it hard to understand why someone would donate to a stranger and put their own life at risk also if they have children of their own. What if they died when donating, would their children be proud or would they feel bitter towards their mother or father who put a stranger first? Donating to a known person when there is an emotional tie to me is different. I am not saying it is wrong at all, I have learned a lot since my first post. But if donating to a strnager was so acceptable why have there only been so few donations to strangers? I know the number is increasing each year but not to the extent it could. I don’t think I am alone in not wanting to risk my life for a stranger. Yes I may jump into the swimming pool to save someone but that would be an instinctive action. Going under major surgery where you could die, get DVT, and all sorts of other things, is a major decision when doing it for someone you do not know. I stand by what I say, that I don’t understnad why a stranger would do that, and I applaud the fact that they are braver than me. Maybe when I am older, no dependants and feel it is time to give back something to life I may think differently but for now I have too much to live for to risk losing it all for a stranger. I think that is quite a natural thing to think and many do.

    I hope you read both my posts, as I am sure you did, in which case I cannot understand your comment. I totally respect Dianes actions, but I still don’t understand how one can risk ones life and familes future if there are children, for someone you don’t know. Now if you don’t like that, then I am sorry, you just have to accept it. Thousands of people think the way I do as they would have put themselves forward if they thought the same as you or Diane. Not all ove us are brave enough to risk our lives for someone we dont know. You need to appreciate that. There is no way I am going to risk leaving my kids fatherless to help get someone off dialysis, sorry but I am not. My kids do and always will come before a strange in these circumstances. When they are grown up and on their own and not dependant upon me, who knows, maybe then I will feel now is a good time and I may understnad more why people are prepared to risk their life or injury to do this. You need to respect that.

    You say to consider what I am saying before I do. Why? I thought we had freedom if speech? Why can I not voice my opinion that I dont understnad why someone would risk their life in this way, I am only saying what thousands think. I also appreciated Diane’s answers and respected her decision to donate. Even if I didnt fully understand. I was being honest and if being honest means getting penalised then so be it. If you don’t like that, then that is your problem, but please do not try to stifle my conerns over this proceedure. If people did not speak up who were concerned then answers would never be given

    I would still like to know where I said that having been evaluated and a stranger found for me to donate to, I then would refuse as that is exactly what you have said, as noone knows who is a match until the tests have been done.

    But I agree, If I ever had kidney failure and a stranger came forward offered to give me a kidney then backed down, that would be devastating. So I also believe that anyone who wants to donat to a stranger makes sure 200% they want to do this so they are not going to back out and so leave someone devastated.

    Yours
    George

  • Scott:

    Hi Diane.

    I looked for a site like this as i would like to be a living donor. I was just wondering how i would go about getting started. Would i just go to my GP or would i need to go to a specialist? It is something i have thought about for many years.

    Yours
    Scott

  • Diane:

    Hi Scott,
    Thanks for making contact and an even bigger thanks for wanting to donate. Brilliant !!!

    No need to go to GP (he/she will be kept fully informed of proceedings anyway by the hospital). You need make contact with your nearest Kidney Transplant Center and ask to speak with a “Live Donor Co-ordinator” and you can make your first appointment which will involve a chat and perhaps some initial testing. Or just a chat and you can go away and consider then get back to them. If you don’t know which Transplant Center to do to then check out this link http://www.organdonation.nhs.uk/ukt/about_transplants/transplant_units/transplant_units.asp – Not all centers will be that near necessarily. Mine was an hours drive away but then you don’t go there that often.

    Read through my blog – the links top left column under “become a donor” and you will see step by step from donor perspective the evaluation process, operation and recovery. It helps greatly to know from a donor perspective what is likely to happen.

    Any questions please just post or if you prefer to chat one to one then use the contact form – link top right of this page.

    All the very best, let us know how you get on.
    Di
    x

  • Scott:

    Hi Diane.

    Thank-you for the information. This was a big help. I have been looking for a way to do this for years as said earlier. I am looking through the links over the next few days to get an idea of what to expect from the process. I truly admire you for what you have done and I for one am glad that there are people in this world willing to help a complete stranger. I know if i was the one needing a situation i would be eternally grateful to anyone who would be willing to give me the quality of living back. I would be honored to be able to help someone in this situation.

    I shall keep you posted on how the process goes.

    Yours
    Scott

  • Diane:

    Hi Scott,
    With today’s technology etc removing a kidney is a doddle compared to how it used to be. In the old days they used to have to break a rib off to get to the kidney (shudder!!). But with leaps and bounds we now have keyhole surgery. I tell you what, I would rather have a kidney out than a tooth out at the dentist, I really would, lol!! Although no guarantees you would have keyhole the decision for keyhole or open will only be finalised once you are on the table!! But even so open surgery today again is so much easier than i ever used to be.

    I am excited for you!!!

    All the best
    Di
    x

  • Anon:

    In no way am I wanting to put other people off donating,
    However sometime last year I donated to a stranger. The risks were explained to me and I was still very keen to go ahead – it was also mentioned about the risk of the recipient rejecting the kidney. Naively I didn’t really think that would happen as I’m youngish and my kidney function test results were excellent. I had the surgery and at first I was informed that the recipient was doing well, but 3 weeks afterwards I enquired again as to how the recipient was doing and I was informed that the kidney had failed in its new owner. I felt very sad, sad for the recipient, but also felt bad as though I had let everyone down from the whole transplant teams involved to the actual recipient. I do not consider myself as a donor, I just see myself as someone who had their kidney removed. As I said before I would never discourage anyone from donating, even after what happened I’m sure if I had another spare one to give I would.

  • Sid:

    Interesting story above. I have read similar thing about the patient rejected the kidney.

  • Diane:

    Yes some patients do reject the kidney in the early stages. Well at any stage it can be rejected or just cease to function.
    Di

  • Anon:

    Sid,
    I am the person who gave the kidney that failed.
    On the outside to look at me I’m ok but inside I am suffering.
    There is a charity give a kidney ones enough and if you read their stories most say how good they feel now after donating and knowing what a difference they’ve made to someone’s life. Some even hearing from their recipient. I don’t experience any of that and I never will.

  • Diane:

    Luckily these instances are rare and the majority of transplants succeed. I sympathise with how you feel, but life goes on. I dont think we donate to feel good about ourselves but to help someone. Once we donate our job is done. It is very sad for the recipient that they rejected the kidney but I am sure they will get another one at some point. At least they have dialysis to fall back on even though that is not always a very enjoyable experience. You can easily make a difference in someone’s life as there are plenty of other ways to help people. So you too can make a difference in someone’s life. So you can experience the feeling of helping someone. If you give blood just think how many lives you have helped save by doing that.

    You can help at many places where people need help. Just looking at their faces and the joy in their smile is a great experience that stays with one for a long time. So dont say you will never experience the feeling of helping someone, as you so easily can.

    Di

  • Sid:

    Thanks for sharing your emotional journey.

  • Sid:

    Diane,

    Why in UK we don’t have something like matchingdonors.com? I can’t see anything else that offer donors and patient a meeting point. I want to help..but I want to know the patient a little bit..I can’t just remove the part of my body to a total stranger.
    I have checked everywhere and I can’t see nothing except matchingdonors.com which ofcourse is owned by US, with majority of patients from US and CANADA.

  • Anon:

    Di & Sid

    I would gladly let them have my other kidney and I would go on dialysis.
    I help people everyday as part of my job but it’s not enough.
    I am on the organ donor register as my parts are no use to me when I’m gone.
    Perhaps then I will of use to someone but of course I’m non heart beating so wouldn’t know.

  • Diane:

    I don’t see the point in you giving your last kidney and going on dialysis when the whole point is to get people off dialysis.

    I am sorry your job is not enough for you. But there are many other avenues in life where you can help people. You need to go and look for other avenues to satisfy your life.
    Di

  • Diane:

    Sid,
    To be honest I am glad we do not have something similar to matching donors. I mean there are people waiting on the transplant list and the NHS do the matching of the donor kidney with the person next in most need that is a match.

    If people went looking for a recipient then it could be they would not have been right up the top of the list, but by giving them your kidney someone else, who would have had the kidney had it been done through the official route, could die.

    I don’t believe matching donors is a very fair way of giving a kidney. Who is to know how many people might die waiting for a kidney that went to someone esle who was not in so much need of one.

    To me it is also a bit like playing God deciding who will get saved and who wont simply by … I dont know … liking their name? or what their job is or ????

    Just my thougths on the subject. I would hate to think someone else suffered because of giving my kidney to someone I chose.

    Di

  • Anon:

    In the uk, it is like a secret service when trying to enquire about donation.
    I know that there should be or maybe already taken place a 100th altruistic donor, I enquired as to what number I was but as usual people in the system can’t even have the decency to reply, you see if I was a prospective donor asking they would answer but now they can’t be bothered. I have written to NhSBt to enquire as to all information they hold about me as I’m entitled to know by law under the data protection act.

    Perhaps I will find my answer there.

  • Diane:

    Sid, if you really are keen on donating then search facebook as there are recipients (UK) on there asking for donors. If you check the home page of this blog there are two recipients stories there, and both are looking for donors.
    Di

  • Diane:

    Anon, I have not found any secrecy regarding donation in the UK except for information regarding recipients and other donors. Yes the 100th has taken place there was publicity on TV other day and in the newspaper.

    Does it matter what number donation you were? I hope you get your answer.
    Di

  • Anon:

    Sid,
    I’m guessing your in the uk.
    Someone I know of has a child who was waiting for his second kidney transplant,
    They got the call the other night, went to the hospital and after a few hours it was a definite match
    And the transplant went ahead, he is doing well. How good is that

  • Sid:

    Yes I am in UK, that’s brilliant.

    I wish patients who need kidneys could come out of the closet and expose themselves. There are people who are not selfish and ready to help..but NOT MUCH INFORMATION regarding these people out there.

    Diane,

    I will check on your site and facebook to see if I can find more information regarding those who need help.

    Concerning Matchingdonor.com, It may not be a fair way to save lives, but I still believe is a good idea, better save a life than save nothing.

  • Diane:

    Hi Sid,
    they are not in the closet. some recipients want a kidney the official way i.e. via the transplant center. also they don’t necessarily want the whole world to know their illness and all about, as strange as that might seem.

    You say “Concerning Matchingdonor.com, It may not be a fair way to save lives, but I still believe is a good idea, better save a life than save nothing.” Yes I agree, but what if it is at the cost of someone dying because they were the next on the list who would have been a match and was walked over simply because the donor wanted private information about them? Is that fair?

    Also the number of donors abroad that have “found” recipients then backed out at the last minute with cold feet. Or they suddently fell out with the recipient because of some triviality. then what afterwards? Will the recipient have to feel forever beholden to the donor? What if they stop sending a Christmas card, will the donor feel put out? I know at least 5 recipients who have had thier lives shattered because of potential donors deciding they dont like them enough to donate, or they are not the one they want to give their kidney to, and you know, they go away feeling depressed, disappointed and above all “what is wrong with me” becuase the donor decided not to give them their kidney.

    If we want to save someone’s life, give them a second chance at life, for me personally it has to come from the heart and nowhere else. I dont want to know my recipient, I dont want them feeling beholden to me. I dont want to wonder whether if I chose my recipient, would another one have died because of my decision. I dont believe it is always best to give with conditions. I don’t want to play God and choose who I save. I would far rather leave it to the doctors in the know as to who best deserves my kidney and whose life I am best helping. Sorry but just the way I am, think about this. I believe in fairness and if we want to help/donate then we should do it fairly without any conditions such as being able to choose the lucky one.
    Di

  • Diane:

    Sid, the other thing is that altruistic donation was only possible as from late 2006 with the first one being in 2007. Now there have been over 100 of them. one aspect of altruistic donation and non altruistic donation is to make sure there is no pressure to donate, that no money is exchanging hands and that there are no ulterior motives for donating. A framework is in place to check this as much as possible.

    Although it si now possible to donate to someone you don’t know but have heard about, as yet no donation has taken place in the UK. The framework for this is not in place yet but is being formulated. So for now each case is treated and dealt with on an individual basis. Many tranplant centers wont entertain this idea. How to you check that there is no incentive, or that money has not changed hands between a donor and selected recipient? At some stage I am sure it will happen. For straight forward altruistic donors the evaluation process can be long and very frustrating to say the least. The transplant teams also need to know the donor is 110% committed to this stranger they have chosen and not pull out after say 12 months of evaluation. Someone I heard about who was turned down from donating to a stranger (altruistic donation) went on to donate to someone in Cyprus and their husband to someone in America.
    Di

  • Sid:

    Good morning Diane,

    You said “what if it is at the cost of someone dying because they were the next on the list who would have been a match and was walked over simply because the donor wanted private information about them? Is that fair?”

    Is hard for me to understand why would someone hide his illness if they are really in need?
    We see sick kids from Africa appear on television everyday asking for help. Charity organization have been using sicks, homeless people, blind, deaf ..etc, to attract contributions to their organizations. Why individuals with kidney or heart problems can’t expose themselves?

    If I am in pain and I am dying, I will do everything to save my skin. I am sure there are many people who feels the same way, including those who ask for help in this website or facebook.

    I feel there’s no shame when someone needs a kidney or heart replacement.

  • Diane:

    Hi Sid,
    I don’t think I said anyone would be ashamed of telling about their illness. and I dont think it is a matter of them “exposing” themselves. Not everyone on dialysis is dying right there and then. People can live for years and years on dialysis and they are not always in pain either. Not everyone though thinks like you. Some people don’t want a kidney at the cost of someone else. Once you have been on dialysis you have a much greater empathy with other people on dialysis. Yes I am sure there comes a time some people want to look for a recipient. Facebook is a good place to start. One would like to think one of their friends or family members would put themselves forward, but often they do not.

    I cannot understand why someone would not want to donate to a stranger but want to choose who they donate to. Just as you cannot understand the reverse. But I respect that view. I love all my fellow man (and woman, lol) and don’t care who I help as long as it is the most deserving person on the list i.e. the one who is most sick and is a match to me. I dont care what sort of life they lead, whether they are a good or bad person, whether they are a familyh person or not or how old they are of what religion they are or whatever. We are all God’s children. If all the donors ddid that instead of going to matching donors sites, then more people would get the kidney they want and move up the transplant list. If more people signed the organ donor register then there would be more people saved. All done in a fair way so noone dies while someone else gets preference simply cos someone like the colour of their hair, or the job they did, or where they lived or whatever. If more people took care of their health they wouldn’t get kidney disease and so fewer people needing a kidney so more to go around. But I don’t want to judge anyone and anyone can have my kidney regardless of who they are.

    There will always be those who want to jump to the top of the list and get a kidney by whatever means possible and therer will always be those who don’t want to give a kidney to the most needy but to someone they choose. So fine, they can do that and I respect that, their wishes/choices and I respect your decision to want to choose your recipient. But I hope too you will respect my view that I could not save my life or give myself a second chance at life at the expense of someone else’s. That is just not in my nature no matter how ill I was – it is not who I am.

    But noone feels shame in telling other people about their kidney disease, some people just dont see the need to go broadcasting it around. Not sure how a heart replacement comes into this as you can’t go around asking for a heart.

    I respect your wish to want to choose a recipient, i really do. In fact I have helped people to find one by giving their story on my site. I will help whoever needs help if they ask. But just that it is not for me or for many others.
    Di

  • Jessica:

    Anon,
    I am a donor. I donated to my step daughter. She rejected my kidney week 4. yes I was so upset. This was 7 months ago and life is back to normal. My daughter waits for another kidney. I just thank God I was able to at least try and help her. I would have been more upset had I not been able to donate. “I don’t experience any of that and I never will.” Why should that bother you? Surely the donation is what matters. It did not work, so sadness for the recipient but life goes on. It is not about the donor and how the donor feels, but all about the recipient. Yes I felt really upset when she rejected my kidney. I cried. I was sad for her, not for me. I am proud of the fact I was given a chance to help her which is more than can be said for a lot of people who don’t even want to help in this way. It is nothing to do with me or my kidney that it was rejected, so why should I feel bad about it? I do not. I donated successfully, as you did. The recipient’s body was not right in tune with the kidney so not our fault at all. Noone’s fault. One of those sad things that happen. I just feel sad she has to wait again.

    You too should feel proud you had the chance to donate and try and help someone. You should not wallow in the thoughts of what you miss out on in feelings. That you will not feel the pleasure of a donation that works. Or receive a letter from the recipient. I do not know when you donated but it does take time to stop feeling sad for the recipient. Especially when that person is family and you have day to day reminders of how ill that person is. But that sadness soon turns to joy as we can be proud of the fact we donated instead of sitting back and not doing anything.

    I hope my daughter gets another transplant before too long. I feel happy that I had the chance to try and help. That means a great deal to me and my family. I am proud of myself for donating. You should also regardless of outcome.

    Jessie

  • Jessica:

    Sid,
    Reading comments between you and Diane re recipients asking for donors. We did discuss this with my step-daughter and she was the one who refused point blank to go looking for a donor, even though both her father and myself were keen to explore all avenues. Siobhan has been on dialysis for 8 years. My kidney was the nearest she has come to getting a transplant. She has made many friends in her dialysis unit and there are those that are far more ill than she is. She is quite adamant that nothing would make her take a kidney by seeking one out and deprive someone more in need, however sick she got. I do not know if Siobhan being a Christian has anything to do with her thought process. We respect her decision and just pray she gets a kidney soon. We have another family member being tested soon. If they are not a match he will consider “pooling” his kidney which may help.

  • Jenny:

    Jessica, what an amazing inspiring attitude to your kidney donation. You are so right, it is the gift of giving that is the main thing, and the fact that you were prepared to put yourself forward and give a kidney. Many people cannot do that even for family. the “anon” donor needs to re-read your account, and realise that the very act of giving is the gift in itself. Yes the outcome is sad, but if no one did it just in case it failed, the world would be a worse place. I am inspired by your positive attitude Jessica. I donated to a stranger just over a year ago, and have no idea what has happened to the kidney and would happily keep it that way. It was one of the the most humbling and awesome experience of my entire life and has changed my whole outlook on the world and my own contribution to it. I agree with Di that the system here in the UK of organs going to the person who is at the top of the list is the morally right way to do it. Who are we to choose who our kidney goes to? Who are we to judge whether someone is “worthy” of our gift. I hope the system in the UK stays this way, as being able to choose our recipient seems to be a very sad way to go, as we would decide that we are fit to judge others as to their value on this planet.

  • Jessica:

    It is always the giving of the gift whatever it is we give or someone else gives to us. We knew there was a chance at some stage the kidney would stop working. Rarely does one last for life. If we are to take into account our gift may not be received exactly how we would wish, then we would never give. We give without condition. That condition is that what happens once we have given is out of our hand and no longer a part of us. I gave knowing it was the giving that lifted all our spirits. The failure of the kidney just strengthened our resolve.

    I think it is amazing that people can donate to a stranger and selflessly do this. The world is a far better place than we are led to believe.

    Diane you met your recipient I believe? How did you feel when you met them? Do you keep in touch?

    Anon – it is all about the giving not the giver. If I can accept my kidney rejected in my daughter you too can accept yours was rejected. Our job is done once the kidney leaves our body. After that we have nothing to do with it. It is not even ours any more. It is more heartbreaking for this to happen to a family member, but we move on.
    Jessie

  • Diane:

    Hi Jessica,
    No I never met my recipient and to be honest I don’t ever want to even if they ask. Who is to say whether I would get on with them etc. Apart from that I would not want them to feel beholden to me at all and have to send the obligatory Christmas card each year, no … not for me. I just wanted to donate and really don’t want to know about the recipient. I didn’t donate with expectations at all. I did get a letter from them via the hospital and I responded and that is where I will leave it.

    I have always felt that donating to a known person is far harder thn donating to a stranger. For me there was no emotional tie at all. At any point, had I wanted, I could have withdrawn and not donated and would not have let anyone down at all by changing my mind. also there would not be the pressure there to “pass” the evaluation tests. I was also able to moan and groan occasionally during recovery, which I would have had to be careful of had I donated to family as would not have wanted them to think I was in any discomfort at all.

    I so admire you and other donors who donate to family. It is not emotionally easy.

    Di
    x

  • mr atkinson:

    my brother gave me the gift of life,for that i will be forever gratfull,but now he has problems with a trapped muscle and has been told by altos medical he is fully fit for work,he now needs help,but there is now help for him,makes me feel even more guilty.

  • Diane:

    Hi Mr. A
    Thank you for posting about the donation. Sorry your brother is having problems, I have heard of trapped nerves etc after donation. the only comfort I can give is that it does get better in time. I know it won’t do any good to say don’t feel guilty. But what I do know is that donors I have spoken to say that they would donate again, willingly even though they had complications after the operation. What they do want to see is the recipient enjoying life to the full, which is something I am sure you are doing. I wish you both all the best and speedy recovery all around.
    Di
    x

  • mr atkinson:

    people may be put off,because you only hear the good stories,which is good,but if their is a problem afterwards,
    you never hear of them even altos sent my brother a good story,as if to say,bad things do not happen

  • mr atkinson:

    its been a year and a half now

  • Diane:

    Hi there,
    Yes bad things do happen. If you read a lot of the comments on this blog people tell of things that go wrong. But you are correct they [medical people] tend to only want people to know the good stories. so it is good that people report when things go wrong. Donors need to be aware of all the risks not just the major ones. One complication that has been posted about more than once on this blog is chest infections, pneumonia and this is once the donor has gone home.
    Di

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