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.
23 Responses to “Emotions – being a kidney donor”
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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
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.
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
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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
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
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~
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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
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
Lindsey,
I read you were donating in August. Can I be so bold as to ask how it all went?
Clive
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
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
Although you are warned that the donated kidney may fail, be aware it can and does happen.
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
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.
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
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
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
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
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
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
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
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
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