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10th May

Great news. Got a letter from the Consultant Nephrologist advising that I am fit to proceed to further evaluation although I should lose some weight and come off HRT before being a donor.  The former I am working on! The latter will be fine over the short term and who knows maybe wont need to go back on it.  He is still waiting the results of other blood tests but they should present no problems.

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12 Responses to “Kidney Donor Evaluation proceeding”

  • paul:

    Thanks very much for setting up this blog and for sharing your thoughts. Being assessed can be confusing-like trying to play a game without knowing the rules. One reason is that the transplant teams themselves usually have very little experience of altruistic donation and are feeling their way. They are likely to be concerned to avoid any possible problems and a bit wary of the donor’s motivation. I found the process rather slow and frustrating at times depite having an excellent transplant coordinator and being medical myself.

  • jackson:

    I read about you online. I thought it was ment to be anonimous. gods work you dont seek publicity. good thing you did but best to stay anonimous

    In Gods name
    J

  • Diane:

    Hi Jackson,
    I know what you are saying and it is noones business but mine what I have done and serves no purpose to go around telling people “hey guess what I am going to do…”. What are people meant to say? It is like telling people how much you donated to a particular charity, sort of like bragging. I would have felt very uncomfortable telling friends and neighbours about it, I had no reason to tell them and did not. So I did this blog anonymously as I wanted to help other people who were interested in donating but wanted first hand information about the process from the donor side.

    Then publicity sought me out, I did not seek it out and never would have. Somehow a reporter found out and just turned up at my door. In listening to his arguments as to why I should do an article, but in doing so I had to identify myself, I then saw the larger picture. In looking at the larger picture, how are people to know that it is possible to donate a kidney when you are still alive, either to a stranger or to someone you know unless it is made public. With Churchill Hospital’s permission I did the interview in the hopt that publicity of this will now encourage people to either put themselves forward to donate a kidney to a stranger or to someone they know who needs one. It is wonderful to know that someone is now enjoying life again, along with their family. That is what it is all about. That is what matters. Being a non directed donor also have to be careful that no information is given out that could lead to the identity of the recipient which must remain anonymous.

    I know this blog has inspired at least three people to put their names forward to donate and that is just so amazing and wonderful.

    Thanks for posting Jackson and all I want out of this now is to help other people thinking of donating and to help inspire others to put their name forward.

    All the best
    Di

  • S:

    Hi Diane,

    I’ve had been thinking of doing this for some time, and even told a friend, then that same weekend you appeared in the press and then again on BBC news in the morning, and that was that, I was on the phone and now I’m on my way to St Jame’s Hospital in Leeds for my first assessment.

    I didn’t think I would be nervous but I’m now on the train typing you this message. It’s an amazing thing you have done, I only hope that I’m brave enough to do the same.

    I would like to keep in touch if that’s OK.

    S.

  • Diane:

    Hi S,
    Thank you so much for posting. You saw me on TV … oh my, did you see that naught camera man as he panned the camera round to show my sockless feet and trousers at half mast .. hahah … joking aside, I continually get amazed at how this blog etc helps to inspire people to donate. I thought when I dontated that would be it. I only did the blog because I found such a lack of information but now that and the publicity is helping people so much. I am thrilled that the publicity has given you that little push though I am sure you would have gone ahead anyway.

    I do not think you would be normal if you were not a little nervous ….. yes of course you can keep in touch, in fact I believe you have already emailed me? I would love to support you if you would let me and to be there for you as and when I am able. Email me any time with any question, no matter how “silly” or whatever you think the question. If you feel speaking to me in person would also help I can give you my phone via email as well,just ask. Don’t know if you listen to radio 4 or not, but 31st May, 9am R4 there is “The Choice” with Michael Buerk where he interviews me. I have not heard the final production but might be worth tuning in to.

    I can’t wait to hear your progress.
    Best wishes
    love Di
    xxxx

  • S:

    Hi Diane,

    I was nervous but confident going into the assessment, but what was great was that they really didn’t tell me anything more that I didn’t already know, and that’s down to you and this site and all the people that have contributed!

    The consultant and surgeon were great and they even examined me, took bloods etc. so now I’m just waiting to find out if I have a clean bill of health….I hope so anyway as I’m only 43!

    What they also explained was the aftercare I receive being a kidney donor, having yearly checkups, I felt that as I’m doing something good that I’ll be well taken care of after the procedure!

    I cant wait to listen to you on Radio 4, in my calendar already!

    Keep up the amazing work you do Diane.

    S.

  • Diane:

    That is good to hear that you were informed that way. Yes the aftercare is hugely important. You should get your first check up about 6 weeks after and then annual ones. I have a check up due soon. Also at any point in between if you are at all worried you go to your normal doctor who will then refer you if necessary. A couple weeks after the operation three stitches broke through and it looked slightly infected. So went the next day to my own doctor who said everything was okay and quite often the end stitches of internal stitches will break through, nothing to worry about and I just washed the area in salt water several times a day and it quickly cleared up. But it is very comforting to know we have our NHS system and that we can just call for help knowing it will be there. My psychologist also offered me after care and that if I ever felt emotionally unable to cope with something to do with the donation to just give her a call. I am not sure what the Radio 4 programme will air as we did 1.5 hours of one to one recording which has to be edited down to 30 minutes, but there might be an emotional moment there and I did nearly contact the hospital about that (back during the evaluation process etc) but I can now cope today okay without. (will explain later if it does not air, but was an interesting episode for me). But had I wanted help with the issue, then I could have got it, I still can if I wanted, and that is very comforting to know.

    There are also various do’s and don’ts after the donation such as must drink enough water each day; should not take NSAID’s which includes asprin; must only do contact sports if wearing protective belt.

    Also if/when you get to donating, as a purely personal choice I doubled the recovery time the surgeon gave me. i.e. when he said not to lift things for a week, I made that 2, etc etc, partly because I wanted to really make sure I was well enough to do the things he said to be careful of and also I did not want to rush anything and perhapd cause an injury as that would not only affect me but could affect the Living Donor Programme also. (All that was my excuse to be pampered for twice as long as I would normally have been, lol…. j/k).

    I get so excited when I hear of other people wanting to donate. I can still recal the emotional feeling I had when going down to the operating room knowing there was someone waiting at their hospital about to get their life back on track, I was so overwhelmed at times with sheer happiness and excitement for them, they were beautiful feelings to have.

    I heard from someone recently who found the donation process not at all enjoyable (if that is the right word to use). What I would say to you and to anyone is keep remembering why you are doing this. If you are getting stressed because you have not heard back from the hospital for a few weeks,then just keep putting the recipient first and thinking of them. If you are stressed waiting, imagine what their life must have been like on dialyis waiting for that all important phone call to say there is a kidney available. It puts any stresses we have well and truly into perspective. Each day I prayed for my potential recipient, even though I did not know who they were and each test or blood test or whatever I had, was one step closer to the recipient getting that all important phone call.

    I am so glad that this blog and comments people have made have helped you so much. perhaps we can have your story to put in the “blogs” section of this website.

    Do keep us posted as to how your assessment progresses. And email if you want.

    TTFN
    Di
    xxxx

  • Diane:

    Hi S,
    I sent you email, let me know if you don’t get it.
    Di
    xx

  • D:

    Hi Diane, hi S, I have found your blog conversation very helpful. I recently heard about the One’s Enough charity on BBC R2, I never knew about anything like this and since hearing I have been increasingly interested in being an Altruistic kidney donor. I was wondering what the outcome of you evaluation and proceedings were S and if you did manage to go ahead with the donation?

    Thank you

  • Diane:

    Hi D,
    Thanks for posting I hope you have found this whole blog of interest as it walks you through the whole process from beginning of evaluation right through to recovery with many other interesting posts. You will find the evaluation links on the left of each page starting with “kidney donation evaluation begins”.

    Yes would be interesting to hear back from “S” as to the outcome.

    “D” if you have any questions please just post and ask. If however you wish to not be so public then you can contact me directly using the “contact” link top right of the page.

    Thanks
    All the best
    Di

  • Hi Di ive been thinking about doing this for yrs , but it is only now I don’t have any family members that may need a kidney from me .So I decided to go forward and try hopefully all will go well ,It is not often you can change someone s life ,for the better and it satisfaction that 1 daY I might be able to do the same again ,,,

  • Diane:

    That is great to hear Trevor and hopefully you will get the evaluation and be able to donate a kidney. Certainly as more people hear about the ability to be able to give one, to someone they don’t know, the more it is being done. So far there have been over 415 people donating, which is great 🙂

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