July 5th, 2010 | 
Author: Evaluation process to be a Living Kidney Donor – finding a recipient – laparascopic surgery to remove kidney – my recovery
Even though the process was not without its frustrations and last minute blips – I would not hesitate to donate a kidney all over again if I could.
For anyone considering donating a kidney, whether to a relative or friend or to a stranger, the majority of this blog would apply. I have been as honest as I can and not just put a glossy cover on it all. The events are as they happened and my feelings and thoughts at the time. I hope this blog will enlighten some people as to the process of donating a kidney. It has been a great learning experience for myself as well. Spending so much time with people who have kidney problems and speaking to patients on dialysis or just having had a transplant, and speaking with their families ….. it has opened my eyes even more to the fact more organ donors are needed. There was nothing in my evaluation or the operation or recovery process that put me off having donated.
Through this journey I have met people on dialysis and they are not living a life, they are surviving a life. Dialysis is life support. Without it they will die – with it they are alive but the quality of life for them and their families is not the sort of life anyone should have to live. They do for years. Once I knew it was possible to give someone and their family back their life it was just something that, God willing, I was determined to do.
I also want to thank everyone working at the transplant unit. Everyone was great and made this whole experience good. There was always a smile and more than that, everyone had time for me. I was never made to feel rushed. When it came time for the operation itself I was made to feel very relaxed and the after care was brilliant.
Please scroll down to read my account of being a kidney donor. The first posts are at the bottom of the blog, the latest just below this posting.
.
Tags: 44 Responses to “Summary of Living Kidney Donor evaluation and kidney donation”
Leave a Reply
Hello,
I have spent a long time reading through every post in this website. It is the most comprehensive account of donating a kidney that I have come across. I feel a bit guilty that I do not want to donate one of my kidneys while alive but I am on donor register and I also donate blood.
Hi Theresa,
Thank you for taking the time to read through my blog, I really appreciate it. I know when I was considering becoming a donor I found certain information lacking in my research. I would have loved to have spoken to a donor to really understand how it was from their point of view but I could not find anyone or any accounts that filled in all the gaps. So that is why I decided to do this blog and not gloss over anything but tell it as it was. I hope it encourages people to become living donors.
Theresa … Please do not feel guilty. Listen .. there are many things we can do to help other people. Lots of people spend a great length of time training and running marathons to raise thousands of pounds. People run charity events continually. Volunteers help out at hospitals and other places. People donate blood – just think what would happen if noone donated blood? Think of the thousands that would die. Each time YOU donate blood you help save a life – how wonderful is that. You should feel very proud of yourself. Also being on the donor register you could save up to 9 people’s lives and give two back their sight. You are already doing amazing things by donating your blood and signing the register. Depending on your age you could also look into bone marrow donation?
The main thing is just helping people. It is not so much what we do but the fact that we do.
All the best
~DF~
I also wanted to congratulate you on a most comprehensive blog on being a living kidney donor. I too read through the whole blog, something I have not done before on anyone’s blog. It did take me a few days in spare time to do but very well worth it. Firstly let me applaud you on what you have done. You are an exceptional person. Wanting to do something like donating is one thing. Actually going under the knife is something else.
You are an inspiration to many people and you seem to continue to inspire by helping other people the way you do. I had not thought about bone marrow donation and will look into it.
I would like to know what do you think makes one person want to donate an organ and not another? I cannot say I would do this. Thinking about donating a kidney while I am alive fills me with horror to be frank. I would do it for my wife or son or family member but only because they are family but I cannot say I would enjoy doing it.
Good luck to you in the future.
Clive
Hello DF,
came home monday(13/09/10) having donated kidney also, and reading your blog made be both smile and wince having just gone through the same/similar experiences. And yes despite the discomfort/pain would also do it again if I had to, especially after my donor coordinator told me of its successful transplant to the recipient ( we both had a sob I freely confess). Hopefully soluble stitches should heal up in the next week/10 days or so, and can get back to some proper exercise. Take care,
PT
Hi PT ….
Thanks for finding blog, reading and responding. 13th? yikes that was only yesterday. Yes the tears of joy far outweigh any discomfort/pain etc. I hope you are coping okay, the first week being the most needy as in need a bit of help from people. It took over a month for some of my internal dissolvable stitches to go as they sort of became external. The two at each end broke through the skin on each incision having first caused a small sort of blood blister. Didn’t really cause any problems once I knew what it was except they itched like blazes and have to admit I did give in a couple of times!! lol .. plenty of salt water washes etc.
Thanks so much for posting and I hope your recovery is swift.
Best Wishes
Di
x
Clive,
I have just read your message and sorry I did not respond earlier. You ask what makes one person donate and not another. I don’t think anyone can answer that to be honest. I mean no way would I run a marathon or do anything that requires great physical effort, yet there are thousands that do. What makes them different? We each are driven by some sort of emotion that compels us to do or not do something – and what causes that is a total mystery to me.
As well as singing up to donate bone marrow you could also enquire about donating blood platelets. Only men can do that so that is something you may be able to help with?
All the best Clive and sorry again I was so late in responding.
DF
x
Way to go girl! I just read about you in the Newbury Paper. I could not believe my eyes when I saw a picture of you on the front page!!!!!!! You never said anything you sly fox you. I did not even know you had given your kidney to anyone. why keep it so quiet?
Diane you are a wonderful person. You were always wonderful but this makes you even more so. I am so pleased to have known you. Why do you not come back to Tesco I enjoyed our little chats once a week, you always brightened up my day, I think it was that smile of yours, always a smile for everyone.
Well done babe!
Claire!
Hi, long time no hear as they say. I don’t get to Newbury that much now. I am actually going to look to Swindon Tesco to see if I can get same job there, it is nearer than Newbury and Newbury didn’t have a job for me last time. You will have to come and shop at Swindon instead, lol. Use the contact form on this blog to let me know your contact details and we can get in touch.
Di
xx
You are an amazing lady and should be very proud of yourself!
Like the others who have posted, I have also read through your blog and feel really encouraged by it.
Like you said, there isn’t any other blogs online that fill in all of the gaps. I have thought about ‘altruistic
kidney donation’ for a fair few months, I contemplated the idea of it when I joined the bone marrow register
at the end of last year. I can’t remember why I was discouraged back then, most likely the lack of information which is
available but you have certainly addressed that :)!! My two initial concerns were… what if something happened to one kidney
and I needed to rely on the other? however I understand that these risks are low that if something happened to one
I most likely wouldn’t be able to rely on the other, so I am no longer phased by this. And… what if a relative needs a kidney in years to come.
That is the only concern of mine which is holding me back… Except, I don’t ever intend to live by ‘what ifs’ (although admittedly part of me
feels slightly selfish towards my family for having this outlook)
I have spoken to two relatives, and two friends about
donating a kidney to a stranger, and they have been largely negative about it. I think this is mainly because they can’t
understand why I would want to do this which is completely understandable. A lot of people had the same reaction when I joined the bone marrow register, personally however
I couldn’t find a reason good enough not to join!
My mum and a close friend have suggested that if i’m that sure that I would like to donate, then why don’t I wait until i’m older?
I can’t explain why I feel so strongly about doing this, well… starting the process as soon as I can.. I just do.
I’m 19 and in my first year of University, i’m young, fit and healthy and know I would have the support of my family (eventually) should I
decide to go through with this/if I can medically. Last summer I volunteered in Kenya, teaching and rehabilitating street children
in Mombasa. It was an unforgettable experience to say the least and I know I had a huge impact on two boys lives in particular. Before hand my
family didn’t support me with my decision to volunteer overseas, I think that was mainly down to concerns about my safety, however this
experience has changed my outlook and my attitude a huge amount and I plan to return this September and this helps me not to be discouraged by others
with my decision to donate.
I have no idea where to start in all of this? Or who to speak to? My uncle suffers with type one diabetes, this isn’t down to diet however.
Would this immeditaly eliminate me from being a potential donor?
Your thorough accounts are an inspiration, you shoud be very proud of yourself!
I look forward to your reply,
Jen xx
Hi Jen,
thank you so much for your lovely comments. I am so thrilled that my blog has inspired so many people and helped answer their questions. That was the whole point of the blog, but I never even knew if anyone would read it let alone benefit.
I just wanted to let you know I have read your comments and I will get back to you in details via this blog, but I would like to clear my plate of paper work etc first so I can concentrate on giving you the best answer I can. I will post back late today and again thank you.
Best wishes
Di
xx
Okay Jen … this is rather a long post but I wanted to get across all my thoughts on this. There may be some negative thoughts below, but they are only thoughts for you to think on. As far as I am concerned if you want to do this, then I will support all I can and be right behind you. Sorry if I repeat myself in the below but have had constant interruptions this end, lol and has been hard to concentrate.
Okay as far as living with only one kidney: How I understand it is that if you were to get a disease that affected your kidneys it would affect both not just one. So although it might mean treatment would need to be started slightly earlier, you would get the kidney problem regardless of one or two kidneys.
Kidney function does drop with only one kidney but as there is a “surplus” of function anyway, the drop involved should have no noticeable effect at all. The only time having one kidney might affect you is if either you do contact sports where you may get a knee or elbow in the kidney area. Even horse riding as you could fall on a jump. So a special protective belt would need to be worn. Then if you were in some sort of accident, say car accident, and the remaining kidney was damaged.
The main thing with having only one kidney is to make sure you live a healthy livestyle. Drink enough water to keep hydrated and help flush the kidney through. Keep away from NSAID’s such as ibuprofen and asprin as they thin the blood and can cause the vessels to stretch and so restrict the flow to the kidney. With two kidneys not so much a worry. Watch the salt intake and generally eat healthily and excersise regularly to help keep fit.
I know what you mean about negative attitudes.
I never joined the bone marrow registry, something I regret, and by the time I got around to it I was too old!!
As for your age I believe you need to be directed by the people on the Living Donnor Team. Some may say it is too young as you are yet to marry and have children. If something did go wrong with the operation, it could rob you of that chance. I do not believe there is any lower age limit as to who can donate, so it would be up to you and the donor team.
Food for thought …
These are questions that float through my mind. I do NOT want to put you off. Wanting to do this is fantastic of you, absolutely wonderful and a great inspiration and example to others. I so totally agree that life events do help mould us into who we are, and your experience abroad has certainly opened your eyes and heart to the needs of others. I do however, feel there are issues you need to thnk about before making any final decision to approach your donor team. Some decisions they may have to make for you.
My main concern is that your uncle has diabetes. That might be a factor they would have to take into consideration before saying they would let you start the evaluation. It could be other family members might get diabetes. Could be perhaps if you had chidren then your children get it at some stage? I don’t know, these are all questions that you need to face and get answers to before any decision is made. It could be one day your uncle will need a kidney, you could donate to him? Being a blood relative doesn’t automatically mean one can be a match and closer relatives to him may not match but you may? Or they may not be willing, but you are. Have you considered that aspect?
You need to be 100% sure in your heart, your brain, your soul, that this is what you want to do. There is no room for guilt or selfish feelings about “what ifs”. If you do have guilt feelings or feel you are being selfish then you are not ready for this yet.
From knowing I wanted to donate to actually putting myself forward for evaluation I spent over a year researching and soul searching and asking myself the “what ifs” and making sure I could deal with consequences. Every action we take, has consequences and we need to be sure we are ready for them. Consequences also included what if I died on the operating table. What if I was left paralyised or some other rare (but does happen) event because of the donation. what would happen to me if that was the case? Being 19 years old that would impact your parents a great deal should something happen. You need to be able to accept those consequences. My son was 30 years old, I was divorced, living on my own. No dependants, no responsiblities other than to myself. My son was very much old enough to understand and take part in the decision making. After doing research he was 100% behind me doing this and was very proud of me for doing it.
Now …
Had my son not been agreeable to me donating or had felt any really strong objections, then I would not have donated. My son is and always will be the most important person in my life. I do feel in your case your parents are in similar situation as my son. They are directly part of you and close to you, especially at your age, and the people who will be hurt most if something happened. Very unlikely it will, but it does and has gone wrong for people. Your parents would be the ones left to look after you. You do really need their support as the donation does/could affect them also.
All this is food for thought. Things for you to really think deeply about and even spend 6 months say afterwards before you make any such life changing decision as there is no going back.
What our heart wants to do isnt always what our brain works out should be done. As Blaise Pascal once said ” “The heart has its reasons, which reason does not know.” You need to be 100% sure in your heart and in your head that you want to do this. You should not have any feelings of guilt or of being selfish or any other negative feelings about doing this. If you have, then you are not ready.
I would suggest you mull over the things I have mentioned. You really do need to get your parents on your side especially as it will be them who has to care for you after the operation and if something went wrong. Then wait about 6 months to let all your thoughts settle and perhaps do a bit more research especially about the diabetes (I waited a year) and then if you still feel as strongly about it then contact the hospital. What I did was go to my doctor first and tell him what I wanted to do and asked him to point me in the right direction. He then contacted the living donor team and put them in touch with me. Suggest that is the way forward for you.
As I said earlier I am not wanting to put you off, but you do need to consider the negatives of this. Just because we want to do something, however wonderful it is, does not always mean that we should.
If you do go ahead with this then you can count on my full support and we can be in close contact via email etc if you wish.
I am going to contact you by email as I have some information that you will find of benefit as will your parents.
Keep up all the good work Jen …. and you are a wonderful person to want to do this and all the other things you have done. God certainly blessed this world with wonderful people.
With love
Di
xxx
Hi Diane
Last time I posted on here I was 19 days away from donating to my mum. Well the op is over and after 5 weeks off work I feel like I’ve turned a ‘recovery’ corner and am ready to go back to work (but I might just take one more week to ‘enjoy’ the time off!) The op was ‘textbook’ apparently and my mum is doing well, they’re really happy with her.
Anyone reading this, I had a total needle phobia prior to starting the tests, used to have to lie down for half an hour afterwards, cried like a baby, hyperventilating etc. Part of my process of going through this was I had sessions with the psychologist and am proud to say that i barely bat an eyelid when i have a blood test now. You’ll be offered the chance to see the psychologist, go see them just to chat things through not only did he help with the needle thing, but the last two appointments we talked through things and it really did help a lot.
Its a hugely emotional rollercoaster going through this but blogs like this, and the groups you get to go to at the hospital make you realise that there are more of us going through this than you first realise – you are not alone and for me, that was in a strange way comforting to know.
I was insistant that i was not going to stay in the hospital the night before the operation and thankfully the hospital agreed so i went straight to surgical admissions in the morning, however depending on where you’re having the operation it might not be possible to do this – my hopsital were starting a study on this and thankfully i was one of the first people to be able to do this.
I’ve never been a patient in hospital before and i wasn’t looking forward to staying but my stay was surprisingly enjoyable (as much as it can be with a catheter in!) I was only in for a few days and one day longer than i had hoped due to having too much painkiller which made me really dizzy so i couldn’t walk as soon as i had hoped.
One thing i would say is that walking as soon as you can really is THE BEST thing you can do for your recovery, i was shuffling around the house for the first few days after hospital, doing laps of the dining room table but i really can’t stress enough, how much i felt my recovery benefit from a few laps of the dining room table, to a short 10 minute shuffle (it was so slow you couldn’t call it walking) outside. It hurts, you’ll be holding your stomach like you’re worried the insides are going to come out, but do it, it really is the best thing you can do.
Now i’m post op, i’m almost wondering what i was so worried about but that’s the benefit of hindsight for you!
Diane thanks so much for writing this, I visited it regularly when i was going through the last number of tests and it helped hugely to know i wasn’t the only one going through this or feeling the way i did.
Now I just need the scar to fade so i can get back in my bikini and strut my stuff on the beach next year!
Karen 🙂
Karen
I am so delighted you have posted, and great you and your mum are doing fine.
You are exceptionally brave to have gone through the evaluations etc with the needle phobia, I know how much courage it took for you to do that. I don’t mind needles at all, but do have a different phobia so know just how debilitating it can be.
Which hospital were you at? Did you have keyhole or open?
I agree with you that walking about does help, even if only shuffling around. It also aids the digestion!! Holding abdomen I found was the best pain relief of all!
You take that extra week off and spoil yourself!!!
Is your mum able to lead a normal life now apart from the medication she has to take?
I am glad this blog helped. I know I found it a very lonely experience and a bit daunting at times not really knowing the donor perspective of it all.
It is also great that from all this you also seem to have beaten your phobia. Was good you had the psychologist to talk things through.
Thanks again for posting and letting us know how it all went. I do often wonder how people are once they have initially posted to say they are going to donate and it is nice to hear how things are.
Take care and enjoy that strutting on the beach next year!!!
Di 🙂
x
Hi, just reading through comments on here, about being able to donate if there is diabetes in family history.
A couple of my uncles have diabetes, all on my mums side of family. I have been given the all clear to donate, which will hopefully take place within next couple of months.
Which type of diabetes do they have? Type 1 or 2? Maybe that makes a difference.
Di
Think type 2, plus my mum is on medication for high blood pressure, which the medical staff were aware of. Also some people look at me as if I’m mad when they there what I’m planning, I know everyone is entitled to their own opinions but it’s my body, I can’t think about all the ‘what ifs’, in which case I would probably never get out of bed each day!
People looking on here thinking about donating, look on web at NHSBT site, from there go to living kidney page, eventually you should see a list of all the transplant renal units in uk, I chose from the list and contacted the hospital directly.
People’s reactions are often because they don’t understand and even if they do, it is not for them. But that does not mean they should judge someone else for what they do. Thanks for info and good luck with it all !!!!
Di
xx
I just want to thank you for your blog as I read it through completely in the run up to donating to my brother. It has been a real help as it was so useful to read what someone who had been through it had to say.
Every word you wrote was exactly as I found it to be so thank you.
I have donated to my brother as he has a long standing kidney problem and ended up on diaysis 4 weeks before the op just to get his bloods better for the surgery. He was only born with one kidney in the 1st place.
Since surgery 2wks ago he is flying along and feels so much better already so I guess my kidney is doing its job well !!
I am fine but tired but it is only 2 wks since op so guess I have to give myself a chance to heal.
Hi Jackie,
What wonderful news. I am so pleased your brother is doing well, and yes, all thanks to your kidney. Well done you. I am also pleased my blog helped. I know the whole process can be a bit daunting. 2 weeks is early, I felt tired for around 8 weeks though of course the first week was the worst and it gradually improved and by about week 5/6 I felt almost back to normal just having to have a bit of a sit during the day then 8 weeks felt back to normal. It affect people differently and I know people who never felt tired at all (lucky them!! lol).
I hope your brother has a wonderful life and is able to enjoy everything that he wants to. And your recovery shoots along. What a great time for you all.
Thanks for letting me know, it is hearing people’s stories and that my blog helped that encourages me to keep it going.
All the best
Di
xxx
Diane,
Thank you for the time it has taken to create this blog. I am currently undergoing tests to become an anonymous kidney donor. Your blog as been so helpful. I’m not quite finished reading it but wanted you to know how enlightening it has been. Thank you for becoming a donor!
Hi Jean,
How fantastic! How far along the evaluation are you do you know? So pleased the blog is helping. Any questions please just post or if you want to contact me direct then you can use the contact form – link at top right of page.
Can I ask what inspired you to put yourself forward to donate?
Thanks
Di
x
Hi Diane
Your blog is amazing and such a help for those of us thinking about being a kidney donor.
To be honest, I had never thought of donating any organ when still alive! But, my brother discovered two months ago that he was suffering from a kidney disease and is already on hemodialisis! That needs some actions and quick. I am not particularly willing to go through the knife, but I wouldn´t be able to live my life as I want to live it, if I deny my brother the chance he needs, when is known that I can still live a full active life with only 1 kidney.
My concerns, apart from the obvious ones, is that I live in the UK, and my brother in Argentina. I have no clue where to start, but can imagine that things are not going to be easy…I will have to travel of course, but need to minimise these trips, as having husband and 3 boys that need me here (although two of them have left home already and the younger is 12 years old). In your experience, and knowing all about the tests, recovery after surgery, etc, etc, you think this is going to be “do-able”?
Many thanks for your inspiration!
Liliana
Hello Liliana,
Thank you for posting. I always think that donating to someone you know takes far more courage than donating to a stranger as there is that emotional bond to deal with as well. It is wonderful you are wanting to help your brother in this way. I will help all I can. I want to find an email for you to someone who has more knowledge about donating abroad, but I cannot access that until tomorrow and will then send it to you.
I have some questions for you on your brother’s situation which perhaps are best to relay via email. Do you think you could contact me via the contact page (link top right of this page) letting me know your email so I can contact you direct? That is if you don’t mind? It will be morning that I get back to you.
Take care
Di
x
I’m 34, your blog has made me cry, spades of tears.
How unselfish, how brave.
I recently signed up to the Donor Register and having read your blog I feel selfish, I have two kidneys and I require one. I hope one day I have your strength, your determination and your courage.
I have the utmost respect for what you have done, and I hope one day, despite my insane fear of needles, I can replicate your decision.
Steve.
Steve,
Thank you so so much for those lovely words. I really do appreciate them. You are not being selfish at all. This is just one way to help someone. There are other ways also, the donor register which you have signed, thank you!!! You know one day that could mean you save around 9 people’s lives!!How amazing is that!
You take care now,
All the best
Di
x
I received an information pack recently plus the DVD which I have just watched and then came to look online and found your very helpful blog.
So far, I’ve mentioned my interest to one friend and she was very worried for my safety so I have decided not to discuss it with her again. The biggest problem for me to take the next step is the fact that I live alone but I am very used to being independent. I have a good circle of friends but my two children do not live locally and could not visit me daily to offer the support I may need.
One section of the DVD presentation specifically refers to discussing my potential donation with family, friends and work colleagues. I am a GP receptionist, so the last of these should not be a problem. I just wondered if you have any insights or advice to offer ?
Well done for donating and taking the time to “blog”.
Barbara
Hi Barbara,
Thank you so much for finding my blog and posting. Also a huge thank you for wanting to donate a kidney, wonderful!!
My experience is that people get negative about altruistic donation because they really do not understand it. Donating a kidney to someone is not new, it has been happening for over 20 years!! What is new (since 2006) is to be able to donate a kidney to someone we do not know. This is what gets people all het up, lol! I mean if you were wanting to donate a kidney to your mother/father, brother/sister, husband/wife … would people be so upset? Probably not. They just cannot get their head around the fact that some people are prepared to risk their life and health to give someone else a second chance at a good life. But hey … there are good people in this world!
Lets look at some statistics. Death from donating a kidney is put at 1:3000 – now that is all living kidney donors, not just altruistic. Noone in the UK has died fromn donating a kidney though. I wonder how people would react if you said you needed a hip replacement? I mean the death from having hip replaced is put at 1:1000 … much higher than donating a kidney, yet I doubt anyone would be so concerned.
With any operation there are risks, we cannot avoid that. Just like there are risks when we get behind the wheel of a car – which personally I call a dangerous weapon as it kills!! or when we cross the road. Look at the stats for road accidents, yet we willingly get behind the wheel and people would throw their hands up in horror at the thought of not being allowed to.
With donating a kidney there is risk of chest infection, wound infection and DVT’s. Certainly the risks are very low, but still there is the risk. The hospital take immense care with each operation and during recovery you are wired up to all sorts of monitors and checked on very regularly so anything that happens will be caught asap. In the UK there have been no deaths from donating a kidney. Some people have had infections afterwards which were then treated.
If donating a kidney presented a bad risk then they would not allow it. The risks are very low indeed.
You certainly do need someone around for when you get home after the operation. You really cannot be on your own and I am not sure they would allow the donation to go ahead unless they were absolutely sure you had someone at home for the first week at least. Or someone who would pop in regularly. You will not be able to lift many things, certainly wont be able to do most of the housework. Even just bending down to pick something up should be avoided. I had someone stay for the first week (and thoroughly enjoyed being spoiled. Milked it a bit also I have to say, lol). Then the second week onward my son was on hand for shopping and anything else as was a neighbour who cut my lawn for me and took out my bins etc. I was very careful. Last thing I wanted was to either burst open the stitches or have something happen which would also not be very good for the donor programme as a whole. So when the surgeon said to me don’t do this for 5 days or whatever, I doubled the time to be on the safe side. Having said that, after 2 weeks I felt fine doing normal non strenuous things and was driving again etc although I still felt a bit tired.
During the evaluation process I decided I would not tell anyone except for my son and ex husband who was my best friend. I told noone else at all. This was for two reasons. One I knew some family members and friends would be dead against me doing this and would pile on the pressure and make the whole thing unenjoyable for me (they would not have stopped me though). The last thing I wanted was to be surrounded by negative people. Also I felt it sounded a bit like I was blowing my trumpet i.e. Hey guess what I am doing …. I tried to think why would I tell anyone. A bit like would I tell anyone I donated money to a charity, no I wouldnt. For me it was not the thing I wanted to do. I never in the future wanted anyone throwing it in my face saying I donated for the pat on the back or to be center of attention or whatever. I was a bit paranoid about making sure I did everything for the right reasons. I did though find the whole experience lonely. I didnt feel I could really chat about it all to my son or ex. A best friend or another friend would have been good but they would have to have been on my side!! I would also have liked to have had another donor to talk to as I knew I would be “safe” but I didn’t.
So if you can find a friend to chat to that would be good as the whole process can be frustrating at times, maybe if you mentioned some of the things I have said it would help put your friends mind at rest? The main thing though is someone to look after you after the operation. That is a must really.
I set this blog up originally because I found it a very lonely and frustrating experience most of the time. Enjoyable also but it should not have been lonely or frustrating. I love chatting to potential donors and following them through the donation process and I am still in contact with people who have already donated. So I am always here for a chat (if you use the contact link at the top of this page, you can come directly to me instead of posting on this blog if you preferred).
As long as you are sure you really want to do this, then no one can stand in your way or put you off. Have a list of potential questions they could ask along with the answers. It is not worth falling out over though with friends, so you need to pick who you tell carefully. Maybe at work it will be better and you can find you can chat to people there easily and know you hve their support. Please feel free to ask me any question you like either via this blog or privately.
Hope I have helped a bit ….
Di
xxx
Thank you very much for your comprehensive reply. I’m seeing the children at Easter and will bring this up in conversation. Seems the tables have turned, a parent asking permission of her children !
You have indeed helped a bit …
Barbara
lol .. yes indeed, tables turned.
Di
x
Hi Diana
I read the entire account of your kidney donation. I can’t appreciate you enough. No need to say that very few people have the courage to do what you did. I also truly appreciate your comprehensive replies to all those posts made by other readers. No doubt, you have set off a chain reaction and the best will happen to kidney donantion because of your kindness.
May God bless you and I salute you again.
Shrikant (Bangalore, India)
Hello Shrikant,
Thank you so much for your very kind words. If one person gets inspired to donate by this blog then I am so happy and people have indeed been inspired. What more could I have wanted to achieve with my writings!
All the very best,
God Bless
Di
x
Hi Diane
I just wanted to say a big thank you for taking the time to do this website. I’m currently coming towards the end of evaluation procedure (I think I just have one more test and the Independent Assessor left) and it’s been absolutely wonderful to know what to expect and to read your summary as someone who has been through it all. It’s helped me to understand what to expect when the time of the operation (hopefully!) comes, as that’s obviously the bit I’m most concerned about. Reading about your feelings and concerns has helped reassure me – I feel like I’ve been able to hear about it direct from someone who’s been through it, with no gloss, and who knows exactly how it feels.
Thanks again and congratulations.
Jan
Hi Jan,
Thank you so much for telling me how much my site has helped you. It is a scary thing donating, as a lot of it is the unknown and the unknown sets us on edge!! But helping people to understand what to expect from a donor point of view, warts and all, lol, is the best way I think. Medical people cannot really tell you, they can only say as from their side of it all.
I am feeling excited for you as it sounds as though you are getting close to donating. I would love it if you would keep in touch and let me know how everything progresses.
Any questions just fire them away or you can contact me directly via the contact link at top of page.
All the very best and thanks again for taking the time to post.
Di
x
Living2U.de das neue Lifestyle Portal rund ums schöner wohnen
Hi Diane,
Thank you so much for posting your blog.
It has really helped me understand each step much clearer. I am a nurse and understand all the technical stuff but Im an absolute chicken when it comes to surgery and the risk of dying!
As I am sure are most people. My sister started on dialysis nearly 6 months ago. My mum and friend have both been tested but are not a good enough match, which has made me think more about myself donating. My first appointment is next Thursday so I am taking my first giant step into possibly donating my kidney.
I used to say most definitely not, even after seeing my dad get a transplant off his sister. As I said Im a chicken! But now Im thinking long and hard. Obviously my husband isn’t sure of the idea but will support me with what I want to do.
I have told my sister now that its a possibility, but have asked her not to tell anyone else as I don’t want any pressure from anyone else, even if they mean well.
Thanks to everyone who has posted on here, I will try to keep you updated.
Mich x
Hi Mich,
Thanks for posting and for your comments.
Well done on wanting to donate one of your kidneys to your sister. I can understand you not wanting anyone else to know at the moment.
Yes there are risks, but let put the into some sort of scale … We take a risk every time we get into our car. We know people have accidents and we know people die – but we still get into our cars and accept those risks – and really, we are using our car for our own benefit, not for the benefit of helping to save someone :). There are also more risks in having a hip replacement operation, yet thousands do every year.
I think people “fear” donating a kidney mainly because it is a rather “alien” concept. I mean if 200 years ago someone said “one day they will take out a kidney and put it inside someone else, and both people will still be alive afterward” I think that person would be run out of town as a mad person 🙂 I mean it does sound rather bizzare, doesn’t it? But to me, it is a miracle! Nothing short of ….. and to be a part of that miracle – to be a part of a team of people that all strive to helping to give someone back a quality of life, is amazing and so wonderful to be a part of that.
I am talking too much – again!!! I just feel so strongly for the live donor programme and I get so excited when I hear from someone, like yourself Mich, that you are considering donating. I makes my day!!
Please keep in touch. If you want to contact me direct at all, then please use the Contact link, top right of the page, and then you will get my email address.
Good luck for next Thursday!
All the best,
Di
x
Hi Diane
I have just read your blog and just wanted to say wow – what a remarkable, wonderful person you are with great courage.
I heard the radio 2 interview with jeremy vine last week and have been researching kidney donation since then. Your blog is inspiring and has only increased my desire to find out more about donation. Thank you
Hi Susan,
I am so glad you are considering becoming a donor. It is certainly the best and most rewarding thing I have ever done. If you have any particular questions please do just ask.
All the best
Di
Hi Diane
Thanks so much for this amazing blog. I have PKD and am waiting for a kidney transplant -hoping to get a living donor before needing to go on dialysis. Your blog answers so many questions for potential donors and I just wanted to thank you for making it available.
Hi Lindsay,
Thanks for your kind words. I do so hope you get the transplants you need very soon. I cannot imagine what it must be like for someone waiting for an organ to become available. I hope I never have to find out.
God Bless
Di
x
Hello Diane, I have also put myself forward to be a live kidney donor. I have completed all the tests now and am just waiting for the call to donate. It was so nice to read your blog as I also don’t know anyone who has put themselves up for this. Some people think I am mad and others think I am very brave, but I don’t feel like either, it is just something i want to do to help someone live a better life. Now I have read what you have said I know I am doing the right thing, thank you so much. Hope you are now well over the operation and having a wonderful life. Thank you once again. Marjorie.
Hi Marjorie,
Thanks for leaving a message. So appreciate it.
Oh the waiting for “the call” …. such an exciting time.
Am so pleased my blog helped you. I know the feeling of being alone in this. You do so wish you could speak with someone who has been through it all.
If you want to chat at any point … we can exchange email. Use the Contact link at the top of the page.
Please keep in touch, would love to know how things progress.
All the best for your donation and I hope it all goes well
Di
x
Hi all
I had donated my kidney to my brother 2 years back. Last week I did a test and my creatinine was 1.61 and urea 48.
The doctors here have told me to just drink water. Until now, in the last 2 years it was always within the range.
Can anyone provide some input ?
Hi,
I came across your website while doing research on my journey to become a donor for my husband or through the donor match scheme. It’s incredibly overwhelming and I’ve found so much comfort and information from your website. It’s been a shock for us as my husband has always been fit and well but at 48 is in stage 5 per dialysis. It’s heartbreaking for our two young children to see him deteriorate and other family members aren’t viable as donors so I’m really hoping I can be. I’m in the early stages, a few weeks away from the investigative tests but trying to learn as much as I can. Thank you for putting all your experiences into this site.
I am incredibly grateful and am sure I’ll be visiting regularly!