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HTA approval given to donate a kidney – Finding a recipient

My transplant coordinator asked if there were any dates I may not be available for the operation and when was best for me. Once I was registered at UK Transplant things could happen quite quickly so it was important I was not registered at until we were ready. I had a couple of dates that I wanted to avoid otherwise a clear calendar. My family were fine for things to proceed also. My details were then registered at UK Transplant.

The recipient is selected for blood type matching, tissue match, age, length of time on waiting list and various other medical / non medical factors, all of which are there to make the system as fair as possible and also to select the best match to reduce any chance of rejection.

Do not think that once you get to the stage of HTA approval that everything will be straightforward.  It may not be. It was not for me. I made the mistake of assuming it would all now be plain sailing but we still had a few hurdles to get over and it was quite an emotional time for me.

Once I had been informed my details had gone onto the database I was telephone a couple days later to say a possible match had been found. Due to the other hospital not being able to process the tissue type matching etc early, an appointment to give blood was not immediately available. Once my blood is given it is rushed to the other centre asap (same day I believe) for the tests to be done. It seemed a long wait, but then the day came. I went and gave blood, came home and then waited. This was on a Monday. I really didn’t know how long I would have to wait and it is always the unknown that puts you on edge. Then on Thursday I had a call from my coordinator, who asked if I was sitting down. Unfortunately the person was not a good match and so had been rejected as a recipient. Can you imagine the joy they must feel to know there is a kidney, then to be told it was a no-go. I was not expecting this and found it extremely upsetting. I could not hold the tears back, it really did knock me back a bit. Later my co-ordinator rang to see if I was okay and she explained that the recipient would have been told it may not be a match but at least they know the system works, and having been called once, they know another call would eventually come.

A few days later another recipient was found and the blood sample was booked for a few days later. I gave blood and again, came home and waited. A week went by and I began to worry again. We were told they would have the results in a further couple of days. Nothing! Eventually my coordinator rang to say the other centre apologises very much but they need more blood. They need to make further checks. A couple days later I went and gave about 8 tubes of blood, so they had plenty. Few days later, a phone call ….. I was asked … was I sitting down again!

I was getting rather depressed with this. I wasn’t prepared for potential recipients being rejected. One was bad enough, but two! I couldn’t believe this was happening. I thought once the HTA approval was given, everything would be straight forward. Most times I am sure it is.

We then had another potential recipient – I gave more blood. Surely third time lucky?  I was however prepared for another rejection.  I told myself that God knew who was going to get my kidney and I just had to be patient and the right person would be found.  A few days later .. yes!!!!! They were a match. I was over the moon. This time I was crying with sheer delight. In speaking with my coordinator she said that it was not unusual for a recipient not to be a close enough match. They had to be as sure as they could be that the kidney would not be rejected.  The potential recipients would have been told by their center that this might happen.  Later I found out from a recipient in my hospital that she had been called four times before she was a match for a kidney/pancreas transplant. How stressful must that be. 

An operation date was set for 3 weeks time. Gosh that now seemed very soon. The regulations state that you have to have final pre op assessment checks within 2 weeks of the operation and this was booked for 9 days before the operation.

I could not be happier. At times I felt this day would never arrive but at last it was all falling into place.

It was strange, but now I had a recipient I suddenly felt responsible and very protective over my kidney. I found I was being very careful with things I did so as not to injure myself. I kept away from people I knew had the sniffles in case I caught a cold from them!  To have had the operation date postponed because I had caught a cold or whatever was just unthinkable. Can you imagine how awful that would be for the recipient! I felt just like I did when I was pregnant and knew I had this very precious life inside me that I had to protect. I now felt I had to protect this kidney.

I also would talk to my kidney. Yes I know, silly, but ….! I even named it. I called it Charlie. I did not know who my kidney was going to, but if a woman then my kidney would be called Charlotte and if going to a man then Charles, so Charlie seems a good compromise. I would put my hand on my back where my right kidney would be and I would Pray to God and ask Him to give this kidney a healthy long life in its new owner. I would speak to my kidney (yes they did give me a psychiatric evaluation!!) and tell Charlie how special it was and how it had to work really hard in its new home as it had a very special job to do and to try and keep nice and healthy. Crazy I know …. !!

Next Post: Living Donor Pre Assessment Clinic

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19 Responses to “A Recipient for my kidney”

  • Nelson Powell:

    Hello

    Good afternoon

    i am a young and healthy many looking for a recipient for my Kidney. I do not smoke and exercise regularly i am from the blood group O+ and i am donating due to financial problems any help/Guideline instructions will be apreciated

  • Diane:

    Hello Nelson,
    Unfortunately selling an organ is illegal in the United Kingdom, USA and most other countries. So I cannot help you with this.

    Regards
    Di

  • prakash:

    hai
    this is prakash,
    from india.i am a young and healthy many looking for a recipient for my Kidney. I do not smoke and exercise regularly i am from the blood group A+ and i am donating due to financial problems any help/Guideline instructions will be apreciated

  • Diane:

    Hi Prakash,
    Thank you for posting on my website. As I said to Nelson, in the UK, Europe, United States and most other countries donating an organ for some sort of reward is illegal. I will not be able to help you with this. But some pointers to consider:

    1) Just because you think you are healthy does not mean you are. People have been turned down from donating because during their very length medical evaluation it has been found they have some illness/disease that would make donating a kidney dangerous for them. Anyone who was prepared to offer you money for your kidney, when it is illegal to do so, I fear could very well lead to minimal evaluation for you, a dodgy surgeon/surgery and very little after care should something go wrong.

    I know it is hard when hit by financial problems, and I do feel for you, but selling an organ is fraught with problems and really not the answer.

    I will pray that you find some other means to help get out of your financial difficulties.

    All the best … stay strong … be brave and keep healthy ….
    With blessings
    Di
    x

  • Caroline:

    Thank you for your marvellously informative blog – all the little details really paint the picture well! I was concerned though that you were not adequately prepared for what to expect – much of the emotional roller coaster of waiting and feeling let down could have been avoided I feel.
    I have had an operation and the details here are all familiar but I suppose if it is your first it would all be strange.
    I am thinking of going inot the AD process as my boss did in 2008 and I have a background in mental health support.
    Thanks again for taking the time to do this – I am sure they are getting more practised as the years go by and more people sign up!

  • Diane:

    Hi Caroline,
    Thanks for your post, I always enjoy hearing from people. So glad you found the blog informative. It is the little things often that can really fill in the gaps.

    Yes certain aspects could have been improved and I am told they have been. For me it was really only communication. It was hard to get hold of anyone to talk to. Having said that, It was always at the back of my mind that daily they are dealing with people who are dying from kidney disease. I was fit and healthy and the last thing I wanted to do was to impose on their busy time. Having said that, it could still have been a lot better. That really was the main thing, being kept in the loop on a regular basis and being able to speak to someone easily. I think where it might have gone wrong (and this is only my guess) is that as I was the first altruistic donor at that hospital they themselves did not know exactly what to expect. The only compulsory evaluation was the mental one. I mean up until then they had dealt with donors who know their recipient and no doubt were seen together and had regualar contact anyway due to dialysis 3 times a week. As for locating the recipient, again I think it was all knew to them. They had not had to match a recipient to an altruistic donor before.

    I have to say I was probably a “good” first timer for them. I never pressurised them, I took the stress of long waiting periods between contact as a challenge. i.e. If I am determined to donate, nothing will stop me. AFter I had donated I did liase with the team and we went over aspects that could be improved upon. They were well aware there were some aspects that could be improved. Since then they are now into double figures on altruistic donors passing through their doors. That is amazing since it is not even 2 years yet.

    Everything else was magnificent!! If I was able to donate again, I would want to do so at the same hospital.
    What made the whole experience (forgetting the little niggles) so enjoyable was the people there. From the receptionist, to the ladies who took blood, to the coordinators, doctors, surgeons, nurses, kitchen staff …. they were all lovely wonderful people. So friendly and kind. Always a smile and I always felt so relaxed there. It was like one great big happy family. Some of them had been there for years and years.
    If I could live my life again, I would want to be a nurse and then specialise on the live donor team side and/or dialysis side. I also met many patients there and you could not help but feel so humbled in front of them. One couple in particular really affected me which is one reason I will do all I can now to help donors or recipients.

    Lovely to hear you might be donating yourself. Any questions please ask.

    Yes the whole process is new – 2007 being the first. Some transplant centers still have not had an altruistic donor pass through their doors. To date there have been 90+ donors and growing all the time. However we still need many more to sign the organ donor register. If most people did then perhaps there would be no need for live donors.

    Thank for posting
    Di
    x

  • syla butler:

    hello well i am syla butler and i am willing to use donate my kidney
    for free i know what it feels like out there so i am willing and ready
    to help .

  • Diane:

    Syla,
    Hello, that is very generous of you. Can you tell me whereabouts you live please.
    Best wishes
    Di
    x

  • Diane:

    Hi Syla,
    I got your contact email. From what you say it will not be possible for you to donate. Thank you for your very kind offer though. My email back to you explains.
    All the very best
    Di
    x

  • Mark:

    Hi I willing to donate for free I want to help someone x

  • Diane:

    Hi Mark,
    That is great to hear. You need to make an appointment with your local kidney transplant unit and speak to one of the coordinators. Do you know where your nearest one is?
    Great you are wanting to do this.
    Di
    x

  • Mark:

    No I live in leeds where is closest? X

  • Diane:

    Hi Mark,
    St James’s University Hospital, Leeds, Tel: 0113 243 3144. Give them a ring and ask to speak with a “living donor co-ordinator” and you can have an initial chat with them about donating.

    If you wish to ask some questions away from the hospital then please either post here or you can contact me direct via the “contact” link top of this page.
    Hope that helps
    Di
    x

  • Sarah:

    Hi my name is Sarah,
    I am 33 years old and live in the south west of England. I count myself lucky that myself and my family are all in excellent health. I know that not everyone is as blessed, this was made all to obvious in my last post in the Royal Navy, living and working with injured Royal Marines returning from Afghan, a job which was both heart breaking but amazingly inspiring.
    I would love to be able to give someone a chance at a healthier happier life and hope to do so in the future. My only frustration is I am of AB- blood type and am restricted as to whom I can donate too.

  • Diane:

    Hi Sarah,
    I think I just got an email from you to which I will reply asap.
    I so admire you for your role with the Royal Navy and I am sure I speak for most people when I say “thank you” and to all fellow service people, for all you do for us. You are all so inspiring.

    I will be responding to your blood type query etc in email later.
    Thank you for posting,
    All the very best
    Di
    x

  • Marie Geo:

    Hi,

    My father is on dialysis and is 65 years old, blood group O.
    weve been told by the surgeon that he will need to have a transplant but can only be a living donor. the living donor we have is blood group a so wouldnt be a match… Im at my wits end as where to go and who to talk to on this.. does anyone have any other suggestions?

    thanks

  • Diane:

    Hi Marie,
    So sorry to hear about your father. Are there no more relatives or family friends who can be tested?

    All the best
    Di
    x

  • Sean:

    Hi there diane, im a 33 year old man, i do smoke and drink.not a lot though. Tonight i watched the nolan show on bbc 1 and and was very impressed with the story of a guy who donated his kidney to another guy who was a stranger.after some thinking , i think it would be something i would possibly like to do myself. Will the doctors even consider a smoker to be a donor? I think its fantastic what you did and i salute you for doing it…

  • Diane:

    Hi Sean,
    Thanks for posting. Yes I read about that donation, they were two coaches that worked together weren’t they? It is wonderful the number of donors is increasing all the time.

    Smokers are not excluded from being donors though because it will involve a major operation you may be asked to totally stop smoking (or at least cut back greatly) for “x” weeks before the operation ‘cos of the anaesthetic etc. But that is something you need to discuss up front when you go for your first meeting at the hospital.

    Fanastic you are wanting to donate, it really is a wonderful gift to give to someone.

    Please let us know how you get on?
    All the very best
    Di

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