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Last year I found out that one of my daughter’s friends mother was in need of a kidney transplant and was looking for a live donor. My first thought was “Oh gosh I hope someone is found.” My second thought was “I’ll repost it on my Facebook page and see if we can find someone.” My third thought was “Why should I expect someone who is my friend on Facebook come forward and offer to give their kidney to someone they don’t even know if I’m not prepared to do it myself?”

So, I took a deep breath and Googled  “Kidney Live Donation”. The first site that came up was an NHS one that took me to a page headed “Could I be a Kidney Donor?”

I read that page and then some more and then a few more, trying to find somewhere that would tell me that I had better not do this thing; but there wasn’t anywhere. Everything I read told me that in order to be considered to be a suitable donor I would have to undergo a battery of tests and unless I was fit and healthy and unlikely to suffer any complications or problems with my own health if I was left with only one kidney, they would reject me as unsuitable.

So, I took another deep breath and picked up the phone.

A few weeks later I found myself at the live donor centre at Hammersmith Hospital at 8 am, more than a little trepidatious. By the time I was ready to leave at the end of my first testing session I was feeling better about it all. Then they handed me a cardboard folder with a ton of paperwork inside it for me to read and I started to panic a bit. Anyway, I decided that I would look at the folder later, threw it in the back of the car (where it still resides) and headed off to IKEA for a crafty shop on the way home.

A while later I heard that the test results had been good as far as they were concerned and that I could proceed to the second stage. This involved spending a day at the hospital having various scans , x rays and blood tests, including a session in something called the Nuclear Medicine Department (which was a bit of a freaky idea for someone who is a fully paid up member of the anti nuclear movement I can tell you).

The last test of the day was the one that tripped me up. My blood pressure went up too high when I was on the treadmill and they stopped the test. But it wasn’t the end of it all, there was a need to get my underlying blood pressure looked at, but not necessarily a red card at that point.

Later I returned to the hospital for another scan as one of my kidney function results was not conclusive, I met with the consultant and we discussed the next stage which would be for me and my potential recipient to meet together with someone who would assess the relationship between us to make sure that I wasn’t being coerced (or paid), but was doing it because I wanted to. Then we discussed the cons for me of going ahead and the first real issue came up. Up to this point I hadn’t realized that if you donate your kidney you cannot ever take steroids or anti-inflammatory medication. I was particularly worried because my father had Rheumatoid Arthritis which I know has a hereditary component and I was scared that if I might develop it later in life I would be unable to take the medication that I know he relied on. I have had joint “issues” over the last few years so it wasn’t a fanciful consideration. As I also had cervical cancer many years ago, the consultant felt that we shouldn’t proceed until I had another smear test and had a blood test to check for Rheumatoid Factor.

I was quite downhearted at this point, having been on a bit of a high about things as it was all going so well. Also, my own mother who is quite elderly was unwell and we were backwards and forwards to the hospital with her which was becoming very worrying.

I went to my GP and booked the tests. They were done quite quickly and the smear test came back clear, one down, one to go. Then my mother was rushed into hospital and all thoughts of anything else went out of the window. Later I received the results of the Rheumatoid Factor blood test and it showed a high level of the factor. It doesn’t mean I will definitely get Rheumatoid Arthritis, but it does mean that the chances are high that I will. In the meantime, mum came out of hospital with no conclusive diagnosis apart from a diverticular stricture in her bowel that might require surgery.

I spent a week agonizing about what to do. In the end I wasn’t sleeping at night because on the one hand I felt so awful about the prospect of phoning my daughter’s friend and announcing my withdrawal and how that would affect her and her mother; but on the other hand, I was so worried about my own mother and also, (maybe selfishly) of my own potential future pain management.

I am a person who wants to help if I can. This time I had to make a very hard decision, one that left me feeling like a complete heel. I pulled out. I have failed to help someone who really needs help, because of my own fears for the future. There’s no way to dress it up as something that it’s not. I have let people down because of my own desire not to suffer the pain that I know I will suffer if I develop the symptoms of an illness that I watched my father suffer from for many years. It’s my own fear that has led me to walk away from doing what would probably have been the most helpful thing I could have done for another human being, because I am a coward.

If anyone is interested in seeing if they can become a donor please check out this link http://www.organdonation.nhs.uk/how_to_become_a_donor/living_kidney_donation/.

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8 Responses to “Sharon Walsh”

  • Michael Dun:

    Sharon you were prepared to do a very generous act – the fact that you, in my opinion, wisely decided not to proceed doesn’t lessen this.
    I say this not only for your sake, but think if you had gone through with it and there had been the foreshadowed complications how would the person you donated to feel.
    Unless, again in my opinion,it’s to give to partner or child then this is something which should only be considered by those who are fully aware of all the risks not just the unlikely chance of death but health complications:
    have no dependents and certainly not by women who have or may want to have children.
    I’m sure there are plenty of old codgers like me who have had a good run for their money and want a chance to put something back – I’ve be functioning very well for the past three years on one which as the say is enough.
    To those who are worried about the hospital side of the op – certainly in my case it was less traumatic that a trip to the dentist and I’ve a brilliant dentist.

  • Kate smith:

    Hi Sharon I am a recipient of an altruistic anonymous donation. For me, the most important thing is that I had to trust the team to absolutely ensure that this amazing person who even thought about doing this for me would not under any circumstances suffer or have any repercussions from doing this. It was a very difficult thing for me to even get past that because as we know there is no 100% guarantee in any op.

    I would never have wanted anyone with the rheumatoid factor to go forward. My father did have exactly that after the many tests – and we did not go forward because of this. You tried and that was an incredible act in itself. Someone who has lived with renal issues knows about ill health and for me, it was about it being’my’ ill health and the thought of imposing that on anybody else was something I could not bear. Like I say, it took some time and talking for me to come round to it. I did and it has transformed my life immeasurably. I know that the team put the donor through every test and it would not have gone ahead had everything not been perfect. I think about my donor every day and I know that their decision will always be a factor in their health. It takes my breath away that I have been touched by such kindness. I am sure that your friend would never , never have wanted you to put yourself at risk like that.

  • Nico:

    Hi,
    Thank you for sharing your story. I’m in the process of being tested for suitability to donate to my sister. It’s going well so far, we matched 6/6 on HLA and all the results for functioning tests etc have gone well. One thing that has not been mentioned so far is the “after” and I pick up on your comment of medications to avoid – I have a dairy allergy and whilst I was told that this would probably not affect donation the idea of limiting medication options throughout my life has worried me. Do you have any further info or links regarding this that I could take to discuss at my next appointment? Thank you, Nico.

  • Anam:

    Hey,

    My name is Anam and I am 27 years old. I am currently doing a degree in professional communication. I am impressed that you decided to save a life because I have been begging people to donate but no luck yet. I just want to have a chance to settle down and spend a normal life. Last year I was diagnosed with renal failure and since then am on peritoneal dialysis that I have to do everyday for 8 hours.

    In order for me to lead a somewhat normal life I need a transplant and due to my Asian background it will take a time period of atleast 5 years until the hospital can find me a donor and there is no guarantee that after waiting for 5 years I will have the transplant. I am currently in UK (London).

    May God be with us all and bless us.

  • Maz:

    I have just come to the end of my tests to donate a kidney to my husband.
    My results have left us both reeling. One of my kidneys function is 57 pc and the other 43 pc I have been told there might be a posibility that it can’t go ahead. For a woman of my age 46 my function should be 80 – 85 but mine is above ninety which is really good. I have my appointment to discuss this in four days time to say yes or no. Is there anyone that has donated will similar results to mine?
    I would be so grateful if you could get in touch.

  • Diane:

    Well, my left kidney was 58% and my right kidney was 42% and noticeably smaller in size. The consultant was more than happy for me to donate my right kidney. Here is the link to the page http://livingkidneydonation.co.uk/independent-assessor-and-hta-approval.htm and scroll down to near the end of the main post where you will read the following – bearing in mind I was 58 years old when I donated and to a stranger i.e. consultants tend to take more precautions than with those donating to someone known. So am not sure why there are any doubts about your donation.
    quote
    Few days later I had an appointment with my Consultant. He looked at all the notes and on his computer called up the images that were taken during the scan of my kidneys. My right kidney was smaller than the left. It was working at 42% and my left kidney at 58%. He said it would be the right kidney that will be used, leaving me with the larger kidney. He was more than happy for the donation to take place.
    unquote

    so ….??? And last year when I had my third year annual check up they were pleased to say my kidney function was as good as it was before I donated ……

  • Hanna:

    Sharon, I just wanted to thank you for your honesty in writing this blog. I’m considering becoming an altruistic donor after hearing about it for the first time last week. I have read many of the stories on this site and found them all incredibly inspiring, but had not yet read of anyone who had withdrawn during the process. I think it’s so important that this is an option, as parting with a kidney without being fully aware and happy to take the risks would be a terrible decision. You are certainly not a coward, as considering donating a kidney to someone unrelated to you is an incredible thing to do. I’m having a few wobbles with no health problems to consider, so your concern about being in pain in years to come is not a small concern at all. I wouldn’t wish the pain of rheumatoid arthritis on anyone any more than kidney failure, so please don’t feel as though your decision was selfish. This blog post is a few years old so hopefully now some time has passed you have had the chance to reflect on what happened and are feeling happier with your decision. Again, thank you for your post, I hope you’re well.

  • Vanessa:

    Hi Sharon
    I think you were very brave to withdraw. You had invested so much energy and emotion into donating and from what I understand not everyone will be accepted as a donor.
    You made the decision not to continue for your own medical reasons and that took a lot of guts in my opinion, to withdraw.
    This for you, happened a few years ago now and I hope you are well and accepting of your decision

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