About ~ Why donate? ~ Brave or stupid?
Why Donate to a Stranger
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.
Why do our wonderfully brave men and women join the Forces knowing they may get injured or killed if they go to war? They are indeed exceptionally brave and courageous people and no-one will doubt that at all, I am in awe of all of them and I am just a shadow in their presence.
Why do we do anything though? Emotions drive us either to do something or not do something. As Blaise Pascal once said ย “Le cลur a ses raisons, que la raison ne connaรฎt point. “The heart has its reasons, which reason does not know.”
Sometimes the drive inside us is so strong we just can’t ignore it. I had 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 wanted to do.
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 as the wheels seem to 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.
This was one of the reasons I started this blog, as was hard to get the full donor perspective of it all. 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. I will tell them nearer the time. 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.
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 cannot say some of the emails have not hurt 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.
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.
When I heard it was now legal to donate to a stranger, I 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.
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 and depression it can bring and believe me, no one should have to go through that. If I can give help to someone, I will – and 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 I really 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.
Itโs difficult to explain why you want to do this โ Life is such a thing of chance and Iโve been very fortunate and I felt this is payback. Further I was ideally placed, healthy no dependants and retired โ early : -)
I stumbled upon this site through a google alert for post kidney transplant. I am touched by what you have done. I received a cadaver kidney in May 2010. I also was not told who the donor was but they told me that if I write a thank-you letter to the family, that they will ask them if they want it and then give it to them. They can decide whether to contact me back or not. Is there not a system like this where you are?
Hi Kevin,
Thank you for posting, nice to know people are still finding my blog. With altruistic donation the same thing happens. The recipient can write to the donnor and it is sent through the “proper” channels first, then the donor can write back, again through the “proper” channels.
I hope you are doing well on your kidney, it must have been wonderful to have received that phone call to say there was a kidney available.
Take care
Di
Kevin,
Just really wanted to update the answer to a question you asked about whether letters can be exchanged with Living donations. Yes I did later receive a letter from my kidney recipient. It was a lovely letter that moved me to tears. It was great to hear first hand that my recipient was doing really really well after many years on dialysis. I did send a letter back to them also.
I also received a Silver Pin Broach from the NHSBT in recognition of the donation. That also was a wonderful surprise. All living donors are sent this gift. A nice touch.
Dear Diane, I was very moved by your interview on The Choice and think your blog is very helpful. I first heard of altrustic donations a year ago from a brief interview with a docor who had done this – also on radio 4 – and thought it might be something for me to consider. Then I was involved in my mother’s health issues so put it to one side. I also thought I might be too old at 53 but it seems not! I have not been blessed with children, so perhaps I feel that giving a part of myself would help someone have a better quality of life even though I have not been able to bring a child into this world (not sure if that makes sense!) I am aware however that my pain threshold is not too great….it sounded like your pain was well controlled in hospital but perhaps a bit harder in the first few days when you got home? If you have time, and any views on what I have said, please do reply but if not, I wish you all the best, Claire D.
Claire,
Hi and thanks for posting. I am glad you found the interview on The Choice moving. I hope it was inspirational to people. We did 1.5 hours of interview which was edited down to 30 minutes, so not always easy to know what they will put forward. But I am so delighted you listened.
I wonder if the doctor you heard was Dr Paul Van Den Bosch …. he worked on the renal wards for many years so knew the plight of being on dialysis.
At the age of 53 certainly not too old. I thought I would be at 57 but there is no upper age, it is all to do with how fit and healthy you are. In fact the oldest donor in the UK is 82! Makes us spring chickens, lol.
It is hard to comment on the pain level as it affects people differently. All I can say is how it affected me. I felt nothing inside me i.e. where the kidney was removed. I thought I would but absolutely nothing, not even a twinge of discomfort, I would never have thought a kidney had been removed! The only pain I had was the bikini line incision. None of the other incision areas. Hard to describe the pain, but it was exactly as one would imagine if you had cut yourself, a sharp(ish) pain, but only when I moved. Sitting, laying down just standing no pain at all, it was only when that area of my abdomen was moving. But when walking I just “hugged” myself in that area and the pain totally went. Some people make like a small bolster that they hug to themselves. The pain only lasted while I moved my abdomen, no lingering aching or discomfort. I am a huge baby when it comes to pain but it was something I just thought I would have to go through and put up with. But I was pleasantly surprised. The thing that affected me most was tiredness, I slept during the day for the first week or so. Yet someone I know who recently donated never felt tired at all … so make of that what you will, lol.
Other people have said they did have quite a bit of pain afterwards and I know two people who said they had no pain at all, just a bit of discomfort. So it is very hard to say exactly what sort of pain you will experience. The pain meds in hospital I actually did not like. Although it took the pain totally away, it made me feel dizzy and a bit sick. I told them to take it away and I would just have panadol.
All I can say really is that if I had more spare kidneys I would donate them without hesitation.
I think it wonderful that you would want to do this, it really is the best thing one could ever do for someone else .. give them a second chance at life.
If you want to know more then please do just ask. If you would rather email direct then complete the contact form (link at top of page) and I will send you my email.
Iknow of three people who have put themselves forward to donate having listened to The Choice and you will be the fourth if you decide to proceed. How wonderful is that.
Best wishes
Di
xx
Dear Di thank you so much for taking the trouble to reply so quickly and I found your email very reassuring and encouraging. As you say, people’s experience of pain/operations is very variable. I will have a further think this weekend and continue looking at the info on your blog about all that it involves. Thanks again, Claire
Claire,
As Di is aware, I have recently donated. I am a total wimp when it comes to dentists, yet if I could donate again, I would!
For me, yes I do have pain at incision site and getting quite abit of backache, but am only taking simple painkillers which help. The worst part for me was the nausea and vomiting for about 2 days post op, I asked them to remove the PCA the next day as was sure it was that that was causing the sickness.
Alot of people I have heard say about the tiredness but I’m definately no more tired than usual and not napping during the day.
I hope you decide to go ahead .
Dear Anon, thank you so much for your message which was helpful and reassuring. Hope you continue to make good progress and really good to read that you would do it again if you could! Claire
Claire,
Which area do you live in, I know Di has a list of people and what hospitals they were in. Different hospitals do things different ways!
I have heard that the recipient is doing well so far which is excellent news.
My hospital team were absolutely wonderful to me and the advice Di has given to me has been invaluable.
Anon, thanks again,I can see that this blog is a very supportive one and good to know about others’ experiences. It is wonderful news about your recipient.
I live in S.E. London and work in Kent borders. I was going to look tonight to see my nearest hospital to approach (presumably a London one), and it would certainly be easier if they have some knowledge of living kidney donation! thanks, Claire
Hi Claire,
London units are as follows
Great Ormond street
Royal London
Guys
St georges
Does this mean you’ve decided to go ahead?
I didn’t see my gp first, I just contacted the relevant hospital and department by e mail.
Claire,
You can find London transplant hospital websites here
http://www.organdonation.nhs.uk/ukt/about_transplants/transplant_units/transplant_units.jsp
Di
Dear Anon and Diane, thanks again, very helpful. I have decided to take the first step of making a preliminary phone call as I would very much like to donate. I am aware I may not, of course, get through the “steps/stages” as it is necessarily a very thorough process, but I won’t know that till I start the process off! Your texts have certainly helped me get this far. There seems to be an allocated Nurse at Guy’s which is probably easiest location to reach so I will try phoning. Thanks so much, Claire
Claire,
Hope the experience for you is as rewarding as it has been for me, all the way along I thought maybe something would crop up therefore preventing me from donating. There were a couple minor hiccups but in the end, they felt safe for me to proceed.
Please keep me updated along the process, good luck
Hello again anon, Just to say I was pleased that the nurse I spoke to seemed very nice and welcoming (for some reason I thought she would not know about the “altruistic” side!), she is sending me a pack to look through and a dvd before I make any appointment at the hospital. Will keep you updated when anything new, Claire.
Did anyone see the article in chat magazine about the lady who donated altruistically? (11 aug issue).
Hi, I did not see the article but good that there is publicity. Also just writing to say that I have had my first appt at my hospital where a very helpful Nurse consultant talked very clearly about all the steps etc and I had some blood tests. I think if these are ok I will have an appt with a Psychiatrist. Will write another comment when there is more “news” of the process.
I just read an article about kidney transplant in our local paper [i live in Tx.] and ended up on your website. I was sad to read that people would call you crazy among other things for having a desire to save someones life. These people are obviously selfish and would not help anyone. You are an inspiration and hope God blesses you greatly for your gift. I haven’t decided whether or not I will follow in your footsteps but will investigate more and meditate on whether or not this is something I should do. You can never go wrong helping someone in need. God bless.
Hi Chris,
Thanks for posting. I think the people who think donors are crazy have really said that out of ignorance. If you really don’t know anything about the whole process then the thought of having major surgery and cutting out an organ, must sound pretty …. crazy! lol
Thank you for your kind words. If you do decide to follow the same route then please ask any questions you wish about the whole process and I will answer best I can. What I can say now is that over a year later I feel fitter than ever and would not even know I had a kidney removed. Donating a kidney to someone is something I have never regretted and never will.
Have a geat and Blessed Christmas,
All the best
Di
I’m really considering doing this but my mum and dad are really set against it and want me to put the idea out of my mind. I am 26 though and a fully-independent adult so it’s not like they can stop me. Still at the very start of the process, unsure whether or not to proceed.
Hi Kevin,
Thanks for posting.
Your parents are scared. to them you want to put yourself through major surgery where there are risks – and all for someone you don’t even know ๐
So it is very natural for their reaction to be what it was/is. You do need family on your side if you can. You don’t say if you are married or have a partner …. but you will need someone to look after you after the operation as no way can you be on your own.
Having support during the evaluation process is also very helpful. It can be/is a very lonely experience unless you have someone close to you to talk to about it.
you don’t say at what stage of the process you are at. But …what I tend to say to people in similar circumstance is … get all the information you can regarding donating a kidney. Ask the local transplant unit for leaflets. Go to the NHSBT / organ donation website and download some information. Get some from this website ….. find out the risks and get those down on paper along with your observations on them ….. Have some phone numbers to hand or contact information (you may use mine if you wish as well) so your parent can make contact with people “in the know” to ask them questions.
Then sit them down – take a deep breath and say to them “mum/dad I know you are against this, but that is just initial reaction to a procedure that is strange to you. Here are the facts ….” and talk them through it. If they ask a question you do not have the answer to … be honest … don’t try and bluff your way through – heck this is your mum and dad you are talking to, lol … they will know! … tell them, you dont know the answer, very good question, you will find out and take that into account when making your decision. Ask them if they would like to speak to the Live Donor Co-ordinator at the local transplant center so they can ask questions direct and hear all about it direct – so they know you do fully understand what you are wanting to do. If they do, then make that appointment.
Tell them you are still open minded and undecided – all you know is this is something you really would like to do. Tell them what inspired you to want to do this. Try not to be defensive when talking to them. Tell them you understand they are scared – would be unnatural for them not to be.
As to whether you go ahead and donate or not … all I will say is, you do seem to be a bit unsure – because of your parents reaction. Maybe now is not the right time for you to donate? You need to be 110% sure/determined to donate.
There is no rush to donate – there will always be someone in need of a kidney. you could always just put things on hold for a while during which time get your parents used to the idea. Say to them, you will at some point be donating and you really want them to understand the process; understand why you are so keen to donate; and really want their support – even though you know they won’t fully understand why you want to do this.
A few paople have said the radio programme I did helped family to understand how important it was to someone who wanted to donate. So listen and see if you think it would be something to help them understand the passion we have in wanting to help someone in this way. I am not sure how long they keep this available for but … http://www.bbc.co.uk/programmes/b011j8z2 …..
It is also good to let family know that once you start the evaluation process you can pull out any time you want and the hospital will back you and understand.
I hope my comments have helped ….. Let me know how you get on and any further questions do just post – or you can contact me direct by using the contact form – link top right of this page. If your parents would like to speak with someone who has already donated then I am fine with that also ๐ – especially as I am mother of a grown up myself.
All the best
Di
x
I donated to a Stranger recently. I did it for the same reasons as you, however, the Treatment I received at Manchester Royal Infirmary has left me traumatised xx
Hi Jaqui,
Well done for donating, but does not sound too good about your treatment. What went wrong? If you don’t want to publicly say then please send me a message via the Contact link at the top of the page.
Di
xx
Numerous things Di. My Canula was not actually inserted so I had no Pain Relief. I didn’t know this until it fell off in the Shower the next day, despite telling at least 3 Nurses I was in pain. I was dragged out of bed 17 hours Post Op. My Gown was falling off at it wasn’t fastened & the blind & door were open. I was screaming in pain but was told I would get bed sores & muscle wastage if I didn’t get up. I was told I had to book & pay for my own Taxi (I live 2.5hrs from the Hospital). This was eventually sorted. Initially I was given someone else’s Drugs to bring home. They realised after 30 minutes & took them back, however, most of my own Drugs were not given to me. The Surgery was a week today & sadly, I cannot stop bursting into tears about it xx
Oh Jaqui, I am so so sorry. What a horrible experience it all sounds. Totally unacceptable! Getting out of bed after that time is normal, BUT …. they should have listened about the pain and certainly not treated you with such lack of caring and respect. Horrendous.
I know you may not feel like it at the moment, but you should put in a complaint. Even if just a letter to the main coordinator. It was inexcusable what happened. Certainly not the norm. Or I have an email address for someone who takes care of all living donations from all hospitals if you wanted.
After the operation emotions can be upside down a bit anyway, but having gone through what you have, I am not surprised you are very tearful. Oh I wish I could give you a huge hug, I really do. Do you have anyone at home caring for you, whose shoulder you can borrow?
Try and focus on the stranger you donated to. I know you don’t know them …. but just remember …. you have given to them the gift of a good life!! How amazing is that ๐ …. you have also given that person back to their family. Not only does the person in need of a kidney suffer but their nearest and dearest do as well, as it all has a knock on effect. So you …. you Jacqui …. have made more than one person the happiest they could ever be … will be able to go on long holidays without the worry of treatment or whether a call comes to be at the hospital. Will be able to eat food etc that has not been allowed …. so many things will now be achievable (well very soon once they settle down after the transplant ๐ ) ……
From speaking with other people over the years who have had a bad experience of some sort (luckily not many people) they all said the thought of someone out there having a better life because of what they did … giving a kidney and all the good and bad experience that went with it …. really really helped.
I know it was not the experience you expected …. but I do hope in time just the good sides will dominate your thoughts.
How are you physically ? Are you still in much pain? Are the incisions healing okay i.e. not too red or inflamed? …. Tired much? ….
Do remember that being emotional is quite normal after the operation anyway. Also some people find it all a bit of an anticlimax and so feel a bit depressed. Havin spent months preparing for the donation, then suddenly it is all over and life carrys on …. it can be hard at times. I know I felt a bit of a depression for a while but shook myself out of it by really concentrating on the recipient.
Not sure if I am helping or not … probably not, lol …. but do just know I am here if you ever want to just chat … you can contact me by the link at the top if you wish …. sometimes we want to talk to someone who knows what we have been through … other times not ๐
Do take care. You are such a wonderful person and should be enjoying this experience for the wonderful gift you have given.
All the very best to you … look after yourself and just think about the person and their family who you have totally transformed their lives for the better ….. wow … turn those tears into tears of joy and happiness ……
Di
xxxx
i am a kidney patient. Have been on dualysis for last three and a half years. its hard going. desperately awaiting a kidney transplant. i am from an asian back ground therefore i have been told i will have a longer wait. some days are so difficult. please pray fior me. Thank you.
Hi Manju,
Thank you for making contact. Yes it is much harder from Asian background to get kidney, I am sad that is the case. Are you able to approach various Asian communities and see if you can explain to them about the need for donors??
My prayers are with you.
Keep believing
Keep hoping
One day it will be your turn for an organ
Stay strong my fiend. Peace be with you
Di
x