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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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62 Responses to “Emotions – being a kidney donor”

  • Diane:

    Hi Therese,
    Thanks for posting. Oh most certainly support is needed. It is strange but the recovery process does vary greatly person to person. The oldest guy to donate who was 83 years old was back mowing his lawn 2 weeks later!! and I know people back at desk jobs a couple of weeks later although I think only part time due to tiredness. It took me around 3 weeks before perhaps I could have gone back to some sort of work (non heavy) but it was over 6 weeks before I could say I was 100% back to normal. The last few weeks just being the fact that I would have to go to bed an hour earlier and a bit of a rest still during the day due to tiredness.

    Knowing how the recipient is I think is on everyone’s minds. You can always ask the hospital to see if you are allowed to find out about the recipient’s health?

    This website does not actually belong to a charity but just by posting here is helping to spread the word. I am going to send you a message because there is one way you may be able to help out. Check your mail box later.

    All the very best
    Di
    x

  • Diane:

    Hi Theresa
    Sorry I meant to add to my reply that I edited your post as you said when you donated and as we have donated to strangers we must not give out any clues as to when we donated, cos there are so few it would then be easy for the recipient to be identified and their privacy would be compromised. I think the advice my hospital gave was to just say “earlier in the year” or “latter half of the year” or “several months ago” etc etc. Hope you don’t mind that I edited
    🙂
    Di

  • Lori:

    Hi Diane,
    Since my original post on Jan. 10, I wanted to give you an update on my kidney donation. I had the surgery and it was by far the best experience of my life. The procedure and the few days following were uncomfortable but I did not experience the pain that some people talk about. Physically I feel completely back to normal now and emotionally I feel even better!

    I was fortunate enough to have met my recipient before leaving the hospital (we had surgery the same day/same hospital) and I believe I have a new friend for life. I cannot express how gratifying it feels to have given life to someone else. There aren’t many things we do in life that can be so fulfilling and I am blessed that I was able to donate.

    I understand now, when donors say that they’d give another kidney if they had one. I feel the same way. Your blog is a great resource for anyone considering kidney donation. Thanks!

  • Diane:

    Hi Lori,
    Thank you so much for the update, I do wonder about people and how their donations went. So pleased it all went so well, probably better thn you expected! How lovely to have met your recipient as well. I never met mine, to be honest at the time I did not want to or for a long while after (for various reasons). Now as quite a bit of time has passed if they wanted to meet I might consider it, but doubt after this time they would, lol.

    It is strange about the level of pain people get and not sure what determines the amount people get. Recently someone told me that their coordinator had told them that the thinner you are the more discomfort you will get. Now not sure how true that is. Most people’s pain seems to be in the area of the incisions not the area of where the kidney was. Mine was purely around the bikini line extraction incision but then it was really due to me being overweight. I mean picture this scenario … bikini line incision about 6″ … then overhanging that a lot of belly fat bit like a curtain having over the windowsill. So each time I walked and took a step gravity would play with the overhang making it bounce like a bowl of jelly!! No wonder the incision complained!!! But I found if I supported the overhang with my hands when I walked then there was no pain whatsoever!!!

    Hope picturing that hasn’t put you off your breakfast!!

    Yes totally agree … wish I had 8 kidneys would glad give another 6 away.

    Actually i was contacted by a lady who while going through the evaluation to donate was found to have three kidneys. I never heard back from her. I wonder whether she was allowed to go on to donate.

    thanks very much for posting, I really appreciate hearing the outcome from people.

    All the very best
    Di
    xx

  • sara shayovitz:

    Hi Di
    Hope you are well.
    I recently donated my kidney and believe the recipient is doing well.
    My recovery not too straightforward but managed to be discharged on the seventh day. How biblical!
    I still feel on cloud nine having been able to help someone and would do it all again without hesitation.
    If I can help in anyway by describing my unique experiences would be happy to do so.

    Best wishes
    Sara

  • Diane:

    Hi Sara,
    Thanks for posting. You do not say if you donated to someone you know or a stranger. I have assumed a stranger. In which case I have taken the liberty of editing your post as you posted the date of your donation. It would be easy for the press or anyone to then find out who the recipient is and then their privacy would be compromised. Hope you don’t mind me doing that 🙂 x

    Seventh Day, yes indeed !!! Hope the complications were not too serious. Was it keyhole surgery?

    If you look at the links at the top of the page you will see one for “blogs” if you would like to have your story there, then please use the Contact link at the top of the page and I will send you my direct email address and you can send your story to that.

    All the very best and hope your recovery continues
    Di
    x

  • Fiona pretty:

    Hi I have just read the emotions you felt on the lead up to donating your kidney ! Wow it was like I had written it myself !
    I donated my kidney altruistically the latter half of last year – I had the same reaction from close friends but especially my son who just thought I was crazy. ,
    I could understand why as his father is dead and his fear of losing his only parent was stronger than the good deed I was doing ! Like you I just knew in my heart there was no reason that anyone could come up with that made me think I was wrong in going ahead .
    My children are grown up I have my health and they have theirs I felt blessed but i was always aware that people were dying due to lack of organs and those waiting were just living an existence , living in hope of someone’s loss being their gain !
    I am proud to have made a difference to someone’s life I have since found out my kidney is now in a boy !!! I got a letter thanking me. .
    Without opening the envelopes I knew instantly who ithey were from !
    it was the perfect end to my journey ! How lucky am I to have had the health to fulfil a need in me and have such a reward !
    Fiona x

  • Diane:

    Hi Fiona,
    Thanks for posting. AS with Sara’s post, I have taken the liberty of removing the date of your donation and the information pertaining to the recipient. Being an altruistic donation, privacy is paramount. The privacy of the recipient must always be maintained. As there are so few altruistic donation, giving aweay the date of the operation could immediately identify the recipient to, say, the press or other people. Giving away detailed information about the recipient could also do the same thing. I am sure you will understand. Your hospital was very remiss in not asking you to not divulge any of that information. I am sure you will be careful in future and not give anything away. I have changed your date to read “latter part of last year”. That way the recipient cannot be identified.
    Thanks for your understanding
    All the best
    Di
    xx

  • Jenny:

    Hello Di
    I am in the early stages of an altruistic donation, with a big day of tests coming up later this month. I have already had the psychologist meeting and clearance. But there are some emotional questions I’d like to talk over with someone. In particular, one of my friends has a daughter in law who is on the transplant waiting list, I only discovered this after starting my donation journey. I have always planned this to be a donation to whoever needs it most, and I don’t want to be the one who makes that decision, indeed I’m not sure I want to know whether the donation was successful or not. There are other things I’d like to chew over as well. So to cut to the chase – did you get a chance for any sort of ‘counselling’ or discussion meetings on this type of issue, or is it a case of think it through for yourself?!

    Well done on starting and sustaining this web site, it’s already been a help reading your blog.

    Good wishes
    Jenny

  • Diane:

    Hi Jenny,
    Thanks for making contact. By the sounds of it, you are considering donating to your friends daughter in law?

    Listen I had many many emotional questions to ask myself, and moral ones, and spent a long time debating them with myself before putting myself forward. Once I had put myself forward I had two chats, one with a psychologist and one with a psychiatrist. Now the former .. the psychologist, she was brilliant as she actually brought up herself the majority of emotional/moral questions I had already asked myself … including ones such as “what if the kidney fails in the recipient – how would I cope” ….. we must have spent well over an hour chatting all these through. She also gave me her business card and said should I have any questions at all, during the evaluation or after donation etc to contact her.

    So I would imagine your questions should be discussed with the psychologist, who you have already seen. you could ask your coordinator if you could speak with her/him again as you have concerns that would relate to chatting over with the psych …???

    If you wish, you can chat with me about some of them and hear my thoughts before deciding whether you just want to think them over yourself or, in deed, speak to someone professional about them? if that is the case please make personal contact with me via the Contact link, top right of the page, that will come straight through to me.

    All I can say here is you do need to have any questions floating around in your head – answered. With myself some of the answers I came up with, or were given to me, were not answers I particularly liked, but I accepted them and I then knew that should that “emotional issue” arise, it would not affect me negatively.

    You may have come across in my posts where I comment on the fact that it was the third potential recipient that was a match for me. Now that was one aspect I did not anticipate and one that was not put to me (it was the hospitals first altruistic donation, so perhaps they had not expected it either?) – and when the first potential recipient turned out to not be suitable it affected me quite emotionally. In fact it was a good year plus before I could think or talk about it without bursting into tears. On the other hand, when the second potential recipient turned out also to not be a match, it did not affect me, as I was then expecting it, even though I did not like that fact ….

    So I do think it important you chat to someone if you can … or if not, that you accept whatever answers you come up with to any emotional questions you try get answered yourself.

    Hope I have not confused you 🙂
    Di
    x

  • Lori:

    Hi Jenny,
    I applaud you for your unselfishness in wanting to be an altruistic donor. I, too, donated my kidney altruistically a year ago and it was the best decision of my life. But Diane is so right, ALL of your questions must be answered before going forward. When I spoke with the psychiatrist, I brought a list of questions and concerns, many of which he reflected on before I could even ask them. I agree with Diane’s suggestion to speak with your coordinator to set up another meeting with the psychiatrist and/or psychologist. I would also be happy to converse with you. If you wish to do so, maybe Diane could provide you with my email.

    Best of luck!
    Lori

  • Jenny:

    Dear Lori

    Thank you so much for your kind and helpful response, sorry I didn’t respond to it sooner. It’s very reassuring to know that things went well for you, and I can see that one of the really good things about the journey I am starting on, will be hearing from thoughtful and warm people such as you and Diane.

    I have a full day of tests on 28 March, so that will be an opportunity to talk to my coordinator about a session with the psychologist,and I take on board what you say about asking all the questions. I should think that, as it is a big teaching hospital, they will have heard them before and be able to give considered responses.

    Jenny

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