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I was challenged recently to try to explain what drives me to donating to a stranger and what is in it for me. If I were paid a large sum of money, then that could be understood as to the motives behind this. But with no apparent benefit – then why do it? Very good question and not always easy to answer.

Why do people decide to sail around the world or climb the highest mountains in the most atrocious of conditions? They are hailed as Explorers and record breakers and daring and brave! Who have they benefited by doing those things? Don’t get me wrong, they are courageous and brave and have pushed the boundaries of what the body can endure to the limit and beyond and I have great admiration for them. Why then when we decide to help someone lead a better life, we are often viewed as … crazy!

Why do we do anything though? Emotions drive us either to do something or not do something. Emotions that just seem to spring from nowhere.

Sometimes the drive inside us is so strong we just can’t ignore it. I had such  a desire inside me to offer one of my kidneys to someone who needed one. That desire just grew over time. I knew it was something I really wanted to do. Having said that, I did not go into this blindly. Even though my heart kept telling me this was something I wanted to do, reality also told me to investigate this, really look into it and then decide whether heart or head wins! I found nothing to dissuade me from doing this … so my heart won.

What do I get out of donating? I do agree that whenever we give, we do also receive, whether it is a great sense of satisfaction or disappointment should something go wrong.

Regardless of what we give – love, help, gift or simply a hug – we get some sort of emotion in return, even without asking for it.

I am certainly not doing this for any emotional thrill at the end. I have had some stress so far. Evaluation is taking a long time . .. the wheels turn so slowly – I am not a very patient patient…lol. There is not much support to be found as altruistic kidney donation is very much a new development in kidney donation in the UK. So finding people to just chat to about this is not easy.  But then I think of the people waiting for a transplant and my frustrations pale into insignificance and it makes me even more determined to want to help one of them get back to normal life.

This was one of the reasons I started this blog, as was hard to get the full donor perspective of it all. I spent around a year, on and off, researching and still didn’t have the answers I wanted that only a donor could give.  I know some people who I should tell I am donating, but they would be against this or just wouldn’t understand, so I have not told them.  This also means that people close to them I cannot tell, as it is not fair to expect people to keep secrets. I can do without negative attitudes at this time and only need people who are prepared to support me – whether they agree with me or not. So that is somewhat stressful, having to keep quiet to people who perhaps I would like to include.

It is interesting that when people cannot understand why someone wants to do something unusual, that does contain risks even if small, that the person is perceived as stupid!

Once I have donated, then what? Unlike donating to a partner or child or sibling, I will have no-one to hug, no-one that I can share in the joy of seeing them begin to lead a normal life; no-one I can look down on when they are asleep and feel my love for them sweep over me – no-one I can tell that they have to take me to the Peking Palace twice a year for a slap up meal!! – No-one I can telephone to ask how they are. I will probably feel a bit depressed because I want to give them a hug and can’t. In fact I will know very little if anything about them at all. I won’t know the recipients name, or anything about them except that they so desperately needed a new kidney – so I imagine I will have a bit of an “emotional hole” for a while. I will Pray the recipient does okay and lives for many years a good life. I will also feel so very happy knowing someone has a new start in life. That feeling will far far outweigh any negative feelings. So there are no “emotional highs” in this so far – just many “emotional frustrations”.

I have had people email me offering their support. Someone who donated last year and people who are currently undergoing evaluation right now and someone just offering me their prayers and wishing me luck. I also have had emails from people telling me I am crazy, nuts, stupid!. .. .I have been verbally abused and sworn at in emails.  I have been offered money even to sell my kidney to them instead of giving it away.  I cannot say some of the emails have not hurt or shocked or upset me as  they have, even though those people do not know me at all. Yes I put myself in that position by having a public blog. But I have also had four people contact me who are wanting to donate (3 to relatives and one considering donating to a stranger) but find it hard to get first hand information from the donor perspective and my blog has helped them decide that they do indeed wish to proceed.

It can only help people to give the full picture. I have not done the blog for any glory or emotional high. I have done it so other people won’t struggle like I have in trying to get certain questions answered but finding the medical answers still leave some holes, which as a potential donor those questions need full answers, and hopefully I can help fill those holes and so help someone make a decision – one way or the other – or be there for a donor who just needs a bit of emotional support from someone who is going through it – been through it. 

Most of my life I have known people who help other people just as part of a normal day. .. often putting themselves out no end just so someone else wasn’t struggling. There was never any question of whether that person deserved help or whether one had the time to help them, one made the time and effort no matter who the person was and if you couldn’t help for whatever reason, you sure as heck found someone who could. One lady in particular who was a neighbour of mine (sadly died many years ago in her 90’s) spent most of her life helping other people who were far healthier and fitter than she was. She was an amazing person and I learned so much from her. I am sure God leads us to people to help enrich our lives.

When I heard it was now legal to donate to a stranger, I again had this strong desire to make a real difference in someone’s life. Between knowing I wanted to donate and starting the evaluation proceeding I had a year. In that time I did a lot of research and speaking to people, including donors. I sought council from my Church and spoke with immediate relatives. I have not gone into this lightly. My emotions may have driven me, but I also did my homework.

None of my research or discussions with people produced anything that made me think twice about my decision. My Christian beliefs I am sure have played a large part in making me the person I am. Life experiences have also influenced my attitudes towards events and people and life in general. It is very rewarding to be able to help someone, regardless of who they are, no matter how little or large the help. 

I have been in three situations over the years where I have really really needed help, physically and or emotionally and never really got it. What help I did get – people soon tired and turned their backs. .. I do not like the thought of people struggling, wanting help and not getting it. I know the emotional pain, loneliness and depression it can bring and believe me  no one should have to go through that. If I can give help to someone, anyone,  I will if I can .

 God willing, I hope that is what I can do in this instance.

What makes us feel the way we do? Why do we feel certain emotions? I don’t really know. All I do know is that this is something my heart tells me I want to do.

The desire to donate must come from within the heart and not from any outside pressure.

I hope this blog can help anyone who does have the desire to donate – whether to a family member, close friend, or to a stranger – to find some useful information here that will help one way or another.

If anyone would like to chat to me about this, then in the first instance you can use the contact form (link at top of page) and let me have your email and I will get back to you. Or there is a forum where you can post or just put a comment against one of the posts.

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64 Responses to “Emotions – being a kidney donor”

  • MariaP:

    Thank you for this website. The information I find very helpful. I am donating to my sister and reading your articles has put my mind at rest. If u can donate to someone you dont know it gives me inspiration to be able to donate to my sister and put away the niggling worries I had.

    Good luck and I will keep reading.
    Maria/Devon

  • Graham Potter from Cambridgeshire:

    Your blog is beautifully worded, and is very helpful.
    As you know, I am in the same process, and its great to share the experiences and process with you and vice versa.

    You are not alone, the support you need is there (and here, if you ever need to talk!)….you are doing a wonderful thing…never forget that!!!

    My thoughts and prayers are with you every step of the way.

  • Diane:

    Hi Graham,
    Thank you for posting a comment, was great to read it. It does at times feel lonely I have to admit just waiting for the postman to bring that next letter to give an appointment date … lol ….I am still waiting for the psychiatrist appointment.

    My prayers are with you also – Will be in touch soon my friend …
    All the best
    Di
    < °)))><

  • Carlos:

    Hello, Until I read this I could never donated even to family. But reading your story so warmed my heart. It must be not nice to be wanting new kidney and not getting one. I did not know you can live with one kidney healthy life. That changes my thoughts. Maybe if family need kidney I will think about it. Thanking you for helping me understand more. Not much is made open about this.
    Carlos

  • vivian:

    Hello,

    As a kidney recipient I can only say thank you to you and others like you. Actually thank you doesn’t begin to cover it, but the truth is that there aren’t words or actions to express the gratitude an organ recipeint feels whether from a living-related donor, a cadaveric donor or an altruistic donor.

    Although it is difficult for most to understand how a stranger would donate of themselves to save someone else’s life, if they only saw the person whose life they saved after their transplant; how healthy and happy they and their families are, they’d understand.

    As for you, you’re right, you’ll probably never know or see with your own eyes the glorious result of your kind and selfless gift. But take it from a kidney transplant recipient, your “gift of life” is the most valueable and wonderous gift we will receive.

    Lots of Love and Health to you and your family,
    Vivian

  • Diane:

    Vivian,
    Thank you so very much for your heartfelt words. I am wiping away a tear or two here … silly I know … but your words have really touched me. It means a lot to read them, even though I do not know you, I feel I want to hug you. I am sure others will feel the same when they read your words. I am so happy to know your life has now changed so much for the better as you have had a transplant.

    I hope your health remains good for a long long time and you enjoy life to the full.

    Thank you again for posting

    Carlos, thank you also for your words. I am so glad that people are understanding more the need for organ donation. I hope noone you ever knows requires a kidney, but if they do and you feel you want to donate, then I hope this website has given you information you need, but we are here to help anyone who wants to know more. Thanks.
    With love xxx
    ~DF~
    < °)))><

  • Lindsey Paynton:

    Hello, I have just read your blog and wow it is amazing, I am donating a kidney to my mother in law in 3 weeks time and obviuosly getting nervous the closer it gets but your honest blog has made me understand what to expect and tips i.e. stock up on pillows. All the emotions you describe are so true from guilt, to excitement and also I have had unexpectantly negative comments so havent told many people. Many many Thanks for your insight which I plan to read again and again up to my op.
    Lindsey

  • Diane:

    Hi Lindsey,
    3 weeks time! Wow …. so close. How absolutely wonderful of you to donate to your mother in law – great that you were a match. I am so pleased my blog has been of help to you. I wrote it because I could not find information myself that really gave the full picture, so I am delighted it is of use to you. If you wish to contact me at all to ask any questions, then please just use the contact form (link at top of page) and I will get back to you asap. Or use the forum if you wish.

    Oh … please post back, any time, but in particular once you have donated, let us know how it all was for you.

    The very best to you …..
    Di
    xx

  • Clive:

    Lindsey,
    I read you were donating in August. Can I be so bold as to ask how it all went?

    Clive

  • Lindsey:

    Hi Clive, Yes I donated my kidney in August and it all went very well. I was very surprised at lack of pain I had. The kidney is working well in my Mother In Law and I am recovering well. I was in hospital for 3 nights, where I enjoyed the care very much. It is now 3 weeks yesterday since my op and I am back to driving (short journeys only), and I return to my part time office job next week.I did get an infection inside my wound in week 2 after op but was put straight on antibiotics which cleared it up, but was quite painful at time. The only pain I have now is a pulling sensation inside and I make sure I still rest alot in between activities. Apart from the pulling I feel no different from having one kidney at all. If there are any other questions please feel free to contact myself.
    Kinds Regards
    Lindsey

  • Clive:

    Lindsey,
    I am so amazed at the comments I read from people that they had very little pain. I am sure the surgeons must have pulled and pushed and somehow one would expect there to be quite a degree of pain inside the body. It is good to read that you both are getting over this well. My good wishes go out to you both.

    Clive

  • anon:

    Although you are warned that the donated kidney may fail, be aware it can and does happen.

  • Diane:

    Hello anon,
    Yes they do fail which is why both donor and recipients are warned about this. Just like we are told of the other risks. We all think it won’t happen to us or our kidney, but it happens to some. One of the risks we take when we donate and when the recipient receives. Yet I know I would never regret having donated if I was later told it had failed in the recipient. At least the recipient got a chance. Hopefully anyone who has had a kidney transplant fail, will be able to have another one at some point. We have to just keep living in hope.

    Best wishes
    Di

  • anon:

    Yes the recipient received a gift of hope, hope that they could have a better life. I would never want to discourage other people from donating and i would still do it again, however nothing can change what I am feeling right now.

  • Diane:

    I doubt there is anything anyone could say to make you feel better. But through no fault of your own the transplant did not succeed. The recipient would have been well warned that this might be the case, though of course noone expects it to happen. It could be they feel very bad for you, I think I would if I was the recipient but I know one thing and that is I would not want you to feel bad about it. You did the most amazing thing by giving your kidney and for that I know they will forever be grateful. I am not sure we should be told anything about the recipient once we have donated. Its not what we signed up for. We gave wanting nothing, yet even knowing the basics of the recipient means we now have a personal connection to them, whether we want it or not. I am not sure that is always a good thing.
    Di
    x

  • Lorna:

    I donated to my brother a year ago and his kidney never even really took. As you can imagine our whole family was really upset and shocked. Even though we knew it may not succeed we did not think it would fail so quickly. I can empathise with how you feel. My brother felt worse than we did over the failure as he felt he had wasted my time and efforts and kidney. We did not feel it was a waste as without donating we would have always felt bad about not. I got over the initial upset by reminding myself my brother was feeling worse than I was over all this. Although we never spoke about it at the time. A lot later when we both had no negative feelings about the donation he also said that he worried about me. By putting our emotions and thoughts into the other person greatly helped.

    Anon whatever you are feeling your recipient could be feeling worse and their thoughts are with you. Concentrate your thoughts on hoping they recover and that they do not ever feel they have wasted your efforts and that they can have another transplant when the time is right and that it will be successful.

    I feel proud I donated regardless of the outcome.

    You too should feel proud of what you have done. The recipient may not have the result they wished. I know my brother gained confidence afterwards. He was scared of the procedure but now he knows all about it and next time he will emotionally be better prepared which has to help. He also felt he was starting from square one instead of having waited for years. So it has given him great hope for the future. Postives do come out of this for the recipient just not in the ways we would have hoped.

    Lorna

  • Diane:

    Hi Lorna,
    Thanks for posting and telling us about how donating affected both you and your brother. I am sorry the transplant did not work out and fingers crossed he has a chance of another one. It is heartwarming to read that your brother became stronger through this. It was kind of you to share your experience and thoughts I am sure it will help others in similar situation. It is true that we must look for the positives and concentrate on those.

    Thanks Lorna,
    Best Wishes
    Di
    x

  • Penny:

    I heard of “Give a Kidney – One’s Enough!” on Radio Kent this morning, and haven’t been able to stop thinking about it all day. It has been extremely useful to read all of these blogs,thank you for all your efforts! I still feel very strongly that it is something I want to do.
    Am I too old at 55?
    And many years ago I had malaria, which very sadly has stopped me from continuing being a blood donor. Will that dash my hopes of kidney donation too, do you think?
    Warmest Wishes to you Diana
    Penny

  • Diane:

    Hi Penny,
    Thank you for contacting me. The charity is really a great one. So little is known about altruistic donation and the charity hopes to raise awareness of it. also for those wishing to donate there is a panel of donors (myself one of them) who can talk/email with potential donors if they wish to hear first hand from someone who has already donated.

    Age does not come into it. The oldest altruistic donor in the UK is, believe it or not, 82 years old!! The youngest 25 years old (at time of donation). So you are just a youngster still! lol. I myself was 58 years old. As for your question about malaria, that I do not know the answer to. So what I am going to do is pass your contact request over to one of the team at the charity who will be able to advise you better as regards the medical aspect. Please post back with any other questions related to the donation or you can contact me one to one if you wish using the contact page at the top right of this page.

    Donating a kidney to a stranger, I have to say was the very best thing I have ever done! I wish I could do it again.
    All the best
    Di
    xx

  • Hazel:

    Hi there,

    I am starting the testing process for donating a kidney to a very close friend and we are hoping to get everything sorted for an op in January 2011. I’m not nervous about the operation but certainly concerned about how I’m going to cope with 4 weeks off work and having a very caring mother fussing over me!!
    My friend has starting to tell people I am going through the testing process and I find their reactions difficult to deal with. People seem surprised and amazed that you are willing to help a family member or friend in this way and for me its awaked people thinking that you are someone special.

    When you have to have time of work or when people see that you are recovering from an operation do you tell them that you have been an organ donor and how do you deal with their response?
    Any advice is welcome

    Thanks

    Hazel

  • Diane:

    Hi Hazel,
    I know exactly where you are coming from. It is hard to deal with other people’s reactions especially when they hail you as some type of hero. You could ask your friend not to say anything, or if she is bursting to tell people to leave out your name and just say it is a friend who wants to keep it private. Having said that the cat is out the bag!! Thing is people will think you special because giving up an organ for anyone is not something most poeple are willing to do.

    After I had my operation and people asked about me, I just said I had an operation without going into details. The few that went further and asked questions like “nothing serious I hope” or even more direct and asked “what for” personally I just brushed it off and said nope, nothing serious and went on to talk about something else or I just responded ” oh you know, this and that” lol .. i.e. none of your business.

    Really it is totally up to how you feel. If you really don’t want anyone to know you are recovering from a donation operation, then make sure your boss knows it is totally confidential and really just don’t tell people. Just say it is personal and generally hints to people not to ask.

    Alternatively you could ask the hospital for several leaflets on living organ donation or print some off the internet and keep them with you. You can always hand one out and start talking about what life is like for people with renal failure and how a transplant is really the only way forward and this is why you are doing it. explaining to people exactly what donating a kidney is all about, how you can live with one kidney and explain to them the process. Tell them about the low risks and educate them about living donation. You never know, one day one of them may themselves donate knowing all about it cos you told them.

    Sometimes we cannot avoid people’s generous reactions to us and yes it is uncomfortable to receive them most of the time, but we can turn it into a good experience by educating people and making them see things in a different light.

    Jan not too far away now, what a great start to the new year!!

    Not sure if what I have said has been of help, just that is the way I dealt with things and still do. I try to educate people where I can on both sides i.e. why the recipient needs a transplant and how it is not such a biggie for the donor.

    Take care, would love to hear how things work out
    Di
    x

  • Hazel:

    Hi Di,

    Thank you so much for your quick response. It’s so nice to hear that you felt uncomfortable with people’s reactions too, it’s always nice to know what you are feeling isn’t unique.

    Turning people’s questions into an opportunity for education is a fantastic idea and one I wouldn’t have thought about. Also brushing it off as something else sounds a good way forward “I’ve had a face lift, can’t you tell!”.

    When my friend became ill it was very sudden and she had a close call so I have mentioned it to some other friends as I was so distressed and since then I can’t help but tell them all the new things I find out. One of the most shocking things i learnt was that cheese was off the menu!!! It’s little things like that which she has found hardest to deal with, it’s a complete change of lifestyle.

    We have just been away for a friends wedding and her dialysis machine was playing up and it was the first time I have seen her that frustrated and upset by her illness and all I could say is not long now 🙂

    Thanks again for your reply and for helping so many others in my position. I’ll try and let you know how it goes.

    Hazel xx

  • Diane:

    Hi Hazel,
    You know it was not until I started going through the donation process and then after the operation the two days recovering there, that I met people waiting for transplant and heard their stories. At times I could not fight back the tears. Life can be so cruel at times and I am blessed that I have very good health, even though I moan from time to time about existing problems that in the whole big picture are nothing but a blip. Meeting and speaking with people waiting for a transplant just reinforced my determination to try and do more to help people if only to be there for other donors, or to educate people in some way about both sides of the tranplant. At times I feel so helpless.

    It is shocking when you hear how some people on dialysis are so restricted by what they can eat/drink. One thing I did find out was that a lot of people I spoke to thought dialysis was instead of a transplant and that they lived quite happy lives on it and didnt really need a transplant. humpf !! I see their eyes opening wide as I tell them the facts and point them towards some dialysis accounts.

    Take care there. Say Hi to your friend for me and you are both in my thoughts.

    Please post again if you have any questions or you can contact me privately if you wish (contact page top right of here).

    Di
    xx

  • Lorraine:

    Hi
    Just read your blog after considering donation…found it really interesting.

    I have no idea why I want to do it but, I definitely do. It comes from within, a desire to help another.

    Watch this space.

    L x

  • Diane:

    Hi Lorraine,
    Great to hear!! Keep us informed.
    Di
    x

  • Hazel:

    Hello again,

    I posted some comments on here a couple of moths ago when i started the testing process for being a kidney donor and just wanted to let you know that all went well. We now have a date for the op which is 8th March, which I have also been told is national kidney day!!! So brilliant timing.

    I’ve been having difficulties sleeping recently and due the op being so close the doctor is unable to prescribe me anything. I’ve also had to stop taking other medication which is causing me a bit of disruption to my daily life. At the moment I just want the op to be over and done with, not because I’m fearful just because I want myself and my friend to get back to a normal life and be able to plan for the future.

    I’m not expecting anyone to reply to this post but I do find it very therapeutic writing down how I feel for other people to read who have been through or are going to go through the same thing as me. It is a situation where people can try and understand how you feel but unless you have been through it I don’t think you can fully understand.

    Thank you for setting up and marinating this site Di, I’m sure you have helped more people that you realise.

    Thanks again,
    Hazel xx

  • Diane:

    Hi Hazel,
    So glad you came back to post. March 8th! wow, that will come quick and yes, what a great day for the donation to be on! Unfortunately having to stop some medication is par for the course. I had to stop mine 3 months before, and yes it is good to then get back to normal, though I have to admit being off the mediation gave me time to research more natural means of medication which was kinder in its production, which I now use – so it did me some good being off it.

    Once you have the op you will catch up on sleep. I know I felt very tired afterwards and slept like a babe for best part of a week, including daytime naps!

    I expect you both have mixed emotions at the moment. Excitement that it is just around the corner but at the same time a touch of nerves as the day nears. But as you say, you both just want the day over and done with so you can get back to a happy and normal life.

    Thank you for your kind words, it does mean a lot to know people benefit from this site.

    I have marked the 8th in my diary and my thoughts and prayers will be with you both on that day. Please post again afterwards to let me know how you got on. You can always contact me direct if you wish to instead (via contact page).

    All the best to you both
    Di
    xxx

  • Natasha:

    Dear All

    I am so pleased that Hazel has told me about this web site – I met her at one of our clinics, as I too am due to give a kidney shortly.

    I am giving it my younger sister. The date was supposed to happen on 26th Jan but it has been slightly postphoned which is a little unfortunate as I found that I had syked myself up for it – but hey ho! Just waiting patiently for a new date to be confirmed which will no doubt be soon as her GFR is really dipping…..

    I think this site is so informative and really helpful, as even though I have a lovely partner, dear close friends and family, I do find the whole topic hard to talk about. I too have found that reactions have been difficult to cope with as I dont feel special or a “hero” for doing this – what I do feel is utter sadness that my poor sister has and is going through such an awful illness.

    My mum gave her a kidney back in 1997 and she is a true inspiration – her op was prior to the introduction of key hole so mine will be quite a different experience I am sure. Mums kidney has been working very well for my sis up until last year, so its just really lucky I am a good match for her – its my turn now!

    Last Oct 2011 mum and I walked the unrestored Great Wall of China for Kidney Research UK with 25 others – it was an amazing experience and for us we really wanted to highlight about Kidney disease and raise awareness and funds for vital research. It marked the charity’s 50th anniversary and was such a fanastic experience. We are having a reunion next month up in York and cant wait to see the other peple – we went away not knowing anyone and came back with 25 new friends!

    I really hope that by educating and talking about kidney donation the huge numbers of people (Around 7000 in the UK presently) waiting on the transplant list will start to decrease….here’s hoping!

    I wish Hazel and her friend all the very best for next week and to all those around the UK who are going through the same emotions and operations.

    Natasha xxx

  • Diane:

    Hazel & Natasha ….
    Any news?

    Di
    x

  • Natasha R:

    Hi Di
    Thanks for enquiring – have heard from Hazel and all seems well. I have a date now too so we are working towards 3rd May so not long. My sister and I can’t wait as she will have such a better quality of life afterwards. I have put R next to my name as noticed there is another Natasha on the blog. Be in touch to let you know how it goes. Natasha xx

  • therese:

    Hi I’ve got my date , FOR ALTRUISTIC DONATION, your blog has been so informative and comforting to go to in those wee small hours when nobody else really understands.
    Thank you,

  • Diane:

    Therese,
    That is wonderful news! wow …. how exciting. I did take the liberty of removing the date prior to approving this post, only being altruistic donation the date should not be made public otherwise the recipient could easily find out who you are or the press could and invade their privacy. Hope you understand.

    So glad you found the blog of help. If I can help any now you are nearing the day please do contact me direct – you can use the contact form at top of page. I have made a note as to when the donation is, so I will certainly be thinking of you both on that day!!!

    How exciting . !!!
    Di
    xx

  • Crystal K.:

    Hi, Diane —

    I just stumbled across your blog as I was once again searching for information regarding altruistic kidney donatons. I am nearing the end of my testing to become a donor, and have passed each phase with flying colors. My next appointment is tomorrow for a meeting with the donor director at my local transplant center.

    Since I am outgoing and usually quite a spontaneous talker, I have been surprised and puzzled by my reluctance to discuss my decision to donate with most people. I shared my decision with my husband a few days after registering as a potential donor, but waited more than three months to tell my kids. My mom and sister did not know for another month after that, and very few of my close friends have been told. It is now seven months since I first signed up, and I cannot explain why I don’t feel like sharing my decision with many people. They all keep wondering why I have been undergoing so many medical tests lately, but I just let them wonder.

    My husband suspects I am trying to avoid people’s negative reactions, and that may be correct. Also, I find it extremely uncomfortable to have people respond with “You are such a wonderful person for considering that”. No, I don’t think I am at all. What do you say back to that? I am also having a hard time responding to the negative reactions, as I don’t feel like I should have to defend my decision. Therefore, it is easier to remain secretive until the final month or so. But, still, it is so out of my character to keep quiet about something so important. Maybe that is why I was so thrilled to come across your blog — Having someone who has “been there” leading the way to make my feelings a bit more understandable.

    As near as I can tell, I am approaching the time when I will be matched up with a potential recipient. All my medical tests are finished, and I just need to cross off a few required meetings with the transplant team and I am ready to donate.

    I stopped reading your postings to write you this note, but intend to finish reading your blog to search for more helpful information. You have done a HUGE service by providing the rest of us with answers and information. There is no one I can talk to about any of this, as I don’t know anyone who has donated a kidney. Thanks so much for making this blog available. It seems to be exactly what I have been looking for all along, and regret not having come across it before now. The last seven months have been full of more questions than answers, so I am going to eagerly return to your well-written posts and get the reassurance I need at this stage of the process.

    With sincere gratitude –
    Crystal

  • Diane:

    Hi Crystal,
    Thank you so much for writing. It has really cheered me up this morning. For some reason woke up feeling a bit low, and reading your comment has lifted my spirits again. Thank you!!
    you know, as you have probably read i nmy blog, but I will repeat for others, two reasons I did not tell anyone except my immediate family (son and ex husband) was that a) I only wanted people who would support me to know. No time for negative people. and b) it was nobodies business but mine. I asked myself, what reason do I have in telling my friends? None … ! I mean I dont tell them about any of the charity work I do, or when I put money in the charity box etc, so what reason would I have to tell them about this. I also did not want, in the future, to have it thrown back in my face and have people say I wanted the “pat on the back”. I didnt even tell people I was off to hospital or anything. Only after I donated did I tell two other family members and then realised I was quite right in not telling them before as got no reaction whatsoever from them, just a blank stare and the subject has never been spoken of since, lol!! Donating isnt really something that we have to share with other people. A best friend and close family maybe so someone to chat to but otherwise … ask yourself, why would you? What would you gain from telling people? Your reaction is quite normal and you should not think twice about why you dont want to tell people. I often wonder why potential donors actually want to tell everyone they know, including the hairdresser, ballet teacher and uncle tom cobbley etc, lol!!
    I told a close family member just before the operation, just so, if (God forbid) anything went wrong she could help explain to rest of family. But I only told her because it was a major operation which carries its own risks.

    But it can be a very lonely journey. If you want to chat to anyone about your donation, then yuo are more than welcome to contact me privately. use the contact form, link at top of page, and I can then give you my email address.

    Once you have had and passed all the medical and psyc evaluations you then have to have a meeting with the Independant Assessor who there and then submits the request for you to donate. The HTA then generally respond within about 5 – 10 working days with their response. Which by that stage is 99.9% sure to be a yes. You then give your agreement to have your details put on the database to find a match. So within another 5 days you should hear from the transplant team there is a potential match.

    NOTE: Be warned they may not be a match. You have to give another blood test and this is “mixed” with their blood to see how their antibodies react. If they react negatively then they are not a match and a new potential recipient will be searched for. With me it was the third potential recipient and from my details going onto database to the third potential recipient being matched took around 6 weeks simple because both hospitals have to be able to do the “match” on the same day. After the recipient is found, then you have to undergo further tests, generally all done on one day. Some of the tests you had at the start of the evaluation will be too old now. you can see what the pre-assessment day is like reading that entry on my blog. Prior to that a possible donation date would have been fixed. Most hospitals will have a transplant day of the week, and again the recipient hospital has to be able to fit in with that. So you could have several weeks further down the line to wait.

    Anyway, thanks for making contact and I am so pleased always when people say they have found my website of great use as that is exactly what i intended.

    Well not sure if you can smell my eggs and bacon cooking, but my tummy is now rumbling like it has never rumbled before, lol! So must off to give my body a good start for the day.

    Please keep in touch. I am not just saying that. I do get so excted for people when I hear they are donating. You will come away feeling a new person. It will affect you in a wonderful way, a way none of us anticipate. I would love to be with you on the remainder of your “journey” and to keep in touch to hear how things are progressing. Again if you wish use the contact form and I can get back to you privately if you wish.

    All the very best, and thank you for wanting to donate. It makes a huge difference not only for that person but for their whole family. It truly is the gift of a new life.

    Di
    xx

  • Crystal K.:

    The day I came across your blog, I made a copy of the first page for my reference. I wanted to make sure I could locate it again when needed. At today’s appointment, I gave the information regarding your website to the donor advocate after I told her how wonderfully useful I had thought it was. You may be hearing from more of us in Michigan (United States) as a result of my recommendation!

    Thanks for your prompt response to my email, and for all your kind and encouraging words. I truly think you are doing a huge service by providing the information you have included in your blog. Maybe my biggest frustration so far has been the lack of someone to talk to regarding my decision to donate, so it is honestly a relief to be able to “talk” to you.

    Thanks, too, for your willingness to be contacted in the future. I just might take you up on that as more questions arise. It helps to have you as a resource to understand each step of the preliminary process.

    I hope your day goes well, and that any low spirits are gone for good!

  • Diane:

    Thanks Crystal!!!
    The more people this blog can help the better. the whole process of donating should be an enjoyable one for the donor and too many people have a stressful or lonely time as a donor.

    Today is great – the Olympics are dominating my days at the moment, lol. What about Phelps eh? Amazing guy.
    Take care
    Di
    x

  • Crystal K.:

    We’ve been cheering on Michael Phelps, too, and also the five female gymnists representing the U.S. I can’t imagine the amount of work and dedication it takes to achieve that degree of greatness. I’m much more comfortable lounging in front of the TV acting as cheerleader for all the competitors. It’s the least I can do to “help” them on to victory!

    The reason I have found your blog so helpful is that it addresses the emotional aspect of trying to become a donor. I have not been able to get much imput regarding that part of the process anywhere else. At this point, I pretty much know all the facts, figures, details of the surgery and recovery, etc., which is fine and necessary. It is vital to fully understand what is involved in becoming a living donor, so all information I have gotten about the preliminary testing and so on has helped me to comprehend the physical details. But what is sorely lacking in all of the research I’ve done so far is the emotional side of things. Few websites address the thought process going on behind the scenes.

    Your entries are easy to understand and very well-worded. You are honest and thorough in your descriptions, and have created a blog that is easy to navigate. This should be on a “required reading list” for anyone who is considering becoming a kidney donor, because it covers pretty much every detail of donation, both physical and emotional.

    I will keep you posted as to my progress along the way. Once again, I am so glad I came across your blog.

  • Dan:

    Just ran across this blog while looking for info on NSAID usage after a kidney donation, and wanted to chime in and thank you all for sharing and bringing awareness to living organ donation. It’s an excellent blog and great resource for those seeking info and for those looking to share and express feelings with other donors recipients and potential donors…Frankly, there’s not a lot out there, …so thank you for the forum…I donated on April 22 2011 to the son of childhod friend whom I reconnected with on Facebook after 32 years…I’m an old guy, 56 (55 at the time), my recipient is a 21y/o young man who was born with only one kidney; that kidney failed on Christmas 2010…In a later entry I will elaborate on the details; it’s actually quite an amazing story of how the death of my own son in a tragic auto crash led to a happy healthy hopeful future for the son of my long lost friend…As it stands now, we are all doing fantasic; healthy happy and once again thriving…Hope to chat and express further at a later time 🙂

  • Jan L.:

    Hello Diane: I am 62 years old and going through all of the processed to be able to donate to my daughter’s best friend who is 38, a wife and mother and a wonderful young lady. Her kidney disease has gotten so bad that she has to do dialysis every night at home – one kidney does not function at all and the other one is down to 4 -5% and she needs a transplant desperately. Because of the fact that she has had so many transfusions it has been impossible to find a donor. They said it might take 10 or more years to find one and the chances er like 2% they would every din one. Lots of people were tested and only a few made it past the first blood test to be able to have their blod matched with hers to see if they could co-exist and everytime it was NO. She was kept her spirits up but you could see how it was wearing on her so I decided to get tested and was so surprised when they called me and said that I was a living donor match. Kerri is so happy but right now my GFR scan is too low so they want me to really hydrate myself and retake the GFR scan and the 24 hour urinalysis. I am praying that it turns out because I rally want to make a difference in her life and her family’s especially her 13 year old daughter.

  • Diane:

    Hi Dan,
    Sorry for the late response only in the middle of house moving and been without internet for a short while.
    What do you mean you are an old guy! lol … I was 59 when I donated, so ….. ummmm …. I must be an old gal! hahah … actually the oldest person in the UK to donate to a stranger was 83 years old at the time. So I thnk that makes you and me both a couple of spring chickens! 🙂

    NSAID – I don’t believe a one off usage does any harm i.e. taking one as a one-off …. it is the use of NSAID’s for several times etc and over a period of time that I believe is where one has to be careful. note that asprin is also included in that. Having said all that, someone I know who donated does take NSAID’s but having told her doctor about the non usage due to single kidney she is monitored regularly while on the NSAIDs.

    So sorry to hear about your son but how wonderful you were able to save your friend’s son. Does sound an amazing story. I have a link on this site called “blogs” if you wish for me to add your story to that, then I can do … just let me know.

    have a great Christmas …
    Di
    x

  • Diane:

    Hi Jan,
    How great you have turned out to be a match close enough for you to proceed with the evaluations. I am sure you can get your GFR up to a level the hospital finds acceptable. My prayers are with you. Please let me know how you get on.

    Your daughter’s friend must stay strong and never give up hope.

    Let me know how things progress …
    All the best
    Di
    x

  • Jill Gilks:

    Hi Diane, so great to read your blog.I am a kidney failure Patient due to start Dyalsis soon. Living in Australia.My sister came out from the Uk to donate one of her kidneys to me. After all the tests a T cell found our match was not going to work. It was very difficult and disapointing. Here in Australia donation is very low. Look forward to reading your blog. Many thanks Jilly.

  • Diane:

    Hi Jilly,
    Thank you so much for posting. So sorry the match was not there with your sister. Yes can imagine how disappointing, frustrating and difficult it must have been.

    Strangely I was communicating with someone from Australia a few months ago who was undergoing evaluation to donate to a stranger. I wonder why donation in Australia is low.

    I do so hope things work out for you soon.
    All the best
    Di
    x

  • Crystal Kimble:

    Hi, Diane —

    I had previously contacted you last summer regarding my upcoming kidney donation. The surgery took place on November 5th, and went amazingly well. From both a physical and emotional aspect, I feel fantastic.

    Since I had donated to a stranger, the past month has been filled with questions regarding the recipient’s health and whether or not the transplant had been successful. I was able to meet the recipient (a woman about my own age) the day I was to be discharged from the hospital, and liked her immediately. As I said to my husband that day — “God chose wisely when He paired the two of us up.” She was a genuinely nice person, and I felt so gratified to be able to help her to have a second chance at good health. But the difference in donating to a stranger, as opposed to a friend or family member, is that you don’t always have the opportunity to witness their progress with your own eyes.

    My request at the time of the donation was to meet afterward, but then for both of us to proceed with our lives with no strings attached. For the most part, I still feel like that is the right decision for me personally. But that choice brought with it the uncertainty of the recipient’s current health, and I have wondered daily how she is doing. I chose to think she bounced right back immediately, and is now enjoying life to the fullest, but had no confirmation that all was well with her.

    Then, a few days ago, I recieved a gift in the mail from the recipient. The accompanying note stated that “Our kidney is doing excellent”. What a tremendous relief!!! That brief note brought me such peace.

    Not once during the entire 10 months from registration to donation did I question my decision to become a kidney donor. There was never any real fear or apprehension; only the very sincere desire to help someone in need, and the unfaltering faith that I would be a suitable candidate.

    My recovery post-surgery was far less painful than I had anticipated. Maybe I was one of the lucky ones — I felt nearly back to normal within a week. Sure, the largest incision was a bit tender when touched for a few weeks, but I just simply made a point not to touch it!

    This experience has been an interesting and gratifying journey, and one that I would gladly repeat if it were at all possible. There is such a need for donated organs. I am thankful that I was healthy enough to undergo the surgery, and to give a gift to a wonderful woman.

    I just thought I would give you an update of my status.

    May you enjoy a happy, healthy 2013. Happy New Year!

  • Diane:

    Hi Crystal,
    Thank you so much for posting and letting me know how things went. I do often wonder about people who have posted as to how their lives have panned out.

    Meeting the recipient is a difficult one. Here in the UK if we had requsted to meet the recipient prior to donation, we would not have been allowed to donate I don’t think. the hospitals here have to be sure we are donating with no question of wanting a “reward” and requessting to meet the recipient would be classed as that. Now after the donation, that is different, lol.

    I was told the day after the donation that my recipient was doing well and I was told their sex and age and very brief bit about their family life etc. For me I did not want the emotional tie of meeting the recipient. I had heard many stories of where they didn’t work out well and donors had wished they had never met them. Have I ever wondered how their health is. yes of course, but only in passing. the first Chritmas I sent them a Christmas card (via the hospital) and asked the hospital if they were doing okay. After making enquiries they told me “yes”. After that I have never asked again and only briefly ever wonder how they are doing. I told myself once, whta if I was told “no sorry the kidney has been rejected”. How would I feel … not very good. So to be honest as a self-preservation point of view, I didn’t want to know any more about them or their health. I am not good with bad emotions, they linger inside me and cause pain. At some point I know the kidney wont last, I just don’t want to know when.

    But that is just me. I live with wonderful satisfaction tht I was honoured and blessed to be able to help someone in such a great way. The way my life was, I could never have helped anyone in any big sense of the word in other ways.

    I am so pleased everything went well for you and the recovery was quick also. Now tht side we can never know until it happens. Lol ….

    I am so pleased to have read your follow up, thank you so much for posting.

    All the very best and a wonderful 2013 to you also.
    God Bless

    Di
    x

  • Jim:

    Hiya. I too am about to embark on the journey of kidney donation. I find it so hard to put all my emotions into words and describe just exactly what my motivation is, but when I think of the torture that kidney disease sufferers go through…well, if I can relieve someone of that, then that’s motivation enough for me.

  • Diane:

    Hi Jim,
    Good to hear you are wanting to donate, the more donors we can get that is brilliant!

    If you need any help or have any questions regarding the whole process then just give a shout.

    All the best to you and good luck!
    Di
    x

  • Lori:

    Hi Diane,
    Thank you for creating this website but mostly for inspiring others to give the great gift that you did. I am undergoing testing to be an altruistic donor at the present time. I’ll have the GFR and CT scan tomorrow and your descriptions of your experiences are so helpful to me. I’ve never had a CT scan or any surgery so your accounts give me great insight to what’s ahead.

    I find that I’m often at a loss for words when people ask why would I want to do such a thing. To me, all I can think of is “why not?” I wish there was a great comeback line to give these folks but for now, if they are questioning what I’m doing with my body, then I see it as their problem and not mine.

    Your candid accounts of everything from beginning to end is so helpful to me. I’ll admit I was a bit surprised to see that you weren’t sure if you wanted to meet your recipient. For me, I’ve always thought I would want to meet the new home where my kidney will go. But you made an excellent point — what if the recipient rejects my kidney, how will I feel then? I’m glad you said that. It made me think. I still want to meet my recipient, but feel better prepared in case it isn’t all what I expected it to be. I will also meet with the psychiatrist on Friday and will discuss this with him as well.

    Again, THANK YOU for this blog and for helping others help others.

  • Diane:

    Hi Lori,
    thank you so much for your kind words, it really lifts my spirits on a dark dreary morning when I feel like I should still be in bed fast asleep!!!

    Meeting your recipient is a hard one. I just didn’t want the emotional upheaval that could go with it. I know quite a few people in the USA who have met their recipient and so many stories of where it has gone bad and both donor/recipient wish they had never met. It was more the long term reactions than the immediate. I am not good with bad emotions, I find it hard to put them to bed. And to be honest I never really gave it that much thought. it was only other people questioning me as to whether I wanted to tht got me thinking.

    Good luck with all your evaluations and I am so glad my account is helping. It certainly would have helped me to know what was ahead of me instead of the “unknown” lol.

    Please post again to let me know how you are progressing, would love to hear. I get quite emotional when I hear of other people donating as it is such a wonderful thing to do – and out there, somewhere is a person …. totally in the dark as to what life is going to hold for them ….. and one day they get the “phone call” that tells them there is a kidney for them. That must be just so amazing.

    All the best and keep in touch
    Di
    x

  • Therese:

    Hi, THere I gave my kidney to a stranger last year. All,s going well and I ,ve no regrets, Although there ,s no denying the whole operation does take a month out of your life and you do need support at home, STill if I!d an extra kidney, I ,d give that one away too.
    I think my recipient is doing well but I ,d love confirmation of that, just something, via the hospital, of course, I wonder how they,re getting on and do they ever wonder about me. bUt that,s not the reason I donated and it does n,t matter, I just still wonder.
    If there,s any thing I can do for your charity or talk to people, let me know, Ther,es only a hundred or so of us ( altruistic donors in the UK) we need to spread the word

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