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Kidney Operation

Posted , 4 users are following.

mikemcg93
mikemcg93

Hello Everyone

I will try to give as much information as I can but there has been alot of problems. I wil try to give the main point to  what I'm trying to say.

My uncle is in need of a Kidney donor operation. I put myself forward and was a match and had all the relevant tests to ensure I was healthy to go ahead with the operation. It was Scheduled for October 2014 and then cancelled 2 weeks before. My uncle and I were then sent to be assessed by a doctor, he checked things like pulse on the inside groin area. He told me I was healthy enough to go ahead with the operation but my uncle wasn't. Throughout the process all the staff I spoke to seems reluctant for me to go ahead with it. The doctor even told me they are putting my uncle back on the donor register which I was quite upset about and explained this to them. Why would they even do that when I am here, ready, waiting. Potentially stopping somebody else from receiving a kidney by pushing me off. Since then I have had little or no contact with my Kidney co-ordinator. My uncles health is deteroirating and he is becoming even more ill. I am so frustrated and upset with the way they have dealt with it all. I was 22 at the time of the operation and believe they thought I was too young. My uncle and I are very close and this would have made me so happy to have been able to do it.

What I want to know is what I can do. PLEASE if anyone can help I would appreciate it so much. If he wasn't well enough for the operation then they obviously couldn't go ahead but it was only 2 weeks prior to this assessment where my uncle was assessed by another doctor who said he was healthy enough and that was when he was put on the donor register. I can't understand how within a two week period someones health could get that bad that a change like that is brought in.

I ultimately thought my uncle would be given a plan of action on what he needs to do to be able to have the operation. If he wasn't well enought then does that mean he will never be able to have it? Please anyone with any advice you will be a life saver.

Thanks so much for reading my mumbling message.

Mike

0 likes, 7 replies

7 Replies

  • Neffie
    Neffie mikemcg93

    Posted

    That makes no sense to Me. I would demand answers. You have to be your own advocate. How old is he?
    • mikemcg93
      mikemcg93 Neffie

      Posted

      My uncle is 53, I would say he is too ill to have the operation right now but I was expecting a plan of action to be drawn up. With things he needs to do in order to become healtier and then the situation reviewed to see if the changes have been beneficial. Am I right in thinking this is what they should have done instead of nothing?
  • mikewordman
    mikewordman mikemcg93

    Posted

    It does sound odd.  Something is missing.  It would help to know:

    -what country you and your uncle reside in?

    -does your uncle have any complicating factors / diseases eg. diabetes?

    -did the doctor offer a reason as to why your uncle would not survive the operation?

    -what does your uncle have to say about all of this?

    -when was the last time you were in touch with the kidney donor coordinator, and what method of communication are you using?

    • mikemcg93
      mikemcg93 mikewordman

      Posted

      -We are both here in the UK.

      - He does now have heart complications due to his deteroirating health.

      - All he said was that my uncle wasn't fit enough for the operation, no elaboration.

      - He doesn't even mention it unless I do, I imagine he's quite upset and fed up, thats the vibe I get. I would do anything to make this operation happen and would go in tomorrow for it.

      - She may have contacted me once since the appointment regarding my uncle not being well enough. Every other time I have contacted her, she did arrange an appointment but I was unable to go due to work. We are in contact by phone. 

      Who do I need to contact to not only get the ball rolling(if it even can be now) and to also voice my concerns about how the kidney co-ordinator and other staff have handled this situation.

      At the time this all happened I really wasn't sure what I could even do or who to contact which is why I haven't and why I'm here today.

      Thanks for any help, really appreciated.

    • mikemcg93
      mikemcg93

      Posted

      My uncle is 53, I would say he is too ill to have the operation right now but I was expecting a plan of action to be drawn up. With things he needs to do in order to become healtier and then the situation reviewed to see if the changes have been beneficial. Am I right in thinking this is what they should have done instead of nothing?
  • mikewordman
    mikewordman mikemcg93

    Posted

    Hi Mike,

    Sorry to hear about your uncle's heart problems.  When I think about it, it actually makes sense that the kidney coordinator isn't being that communicative with you - after all, you are not the patient and as such, any medical information relating to your uncle will be considered confidential.  As such, it's difficult to know if they handled things appropriately / inappropriately.

    Unfortunately, I am hard pressed to advise you on this since you are not the patient.  It seems to me it is all up to your uncle now - he will either need to 1) somehow improve the condition of his heart in order to be able to withstand the surgery (not sure this is likely?), or 2) seek a second opinion and hope for a better result.  Given that it is your kidney foundation that made the decision, perhaps he is able to appeal the decision?

    Apart from that, all I can offer are "creative" suggestions, such as:

    -writing a letter outlining your concerns and your urgent desire to donate your kidney to your uncle, and address it to the highest levels of authority (more than one person) in the kidney foundation.

    -copy the letter to your local minister / governmental authority

    -contact your local newspaper and try to get your story "in the news" in order to apply pressure.

    NOTE:  before you try ANY of these I suggest you run them past your uncle first.  He may not wish to kick up a public fuss.

    I hope that helps (a little?) and wish you success,

    PS. I'm in Canada so no doubt our system here is a little different.

    PPS. - very nice of you to donate your kidney so willingly.  I wish I had such a donor!  I sincerely hope your uncle is able to improve his health in order to be able to accept your generous gift.

    • mikemcg93
      mikemcg93 mikewordman

      Posted

      Hi Mike

      Thanks for your message I'll definitely look into doing those steps. The kidney co-ordinator is solely for me. She has met my uncle a few times but only for blood tests. One more thing I'd like to tell you as I'm not sure I have above is that I had applied for a job and was awaiting the outcome. I was successful and got the job but turned it down so that I could go ahead with the operation. I told the kidney-coordinator about this and told her I wasn't going to tell my uncle because I didn't want him to feel bad. She then told him a couple of weeks later in an appointment where I was waiting outside. I fear it's too late now and it is really stressful because if they was helpful and planned what he would need to do then maybe he would be ok now.

      Also would it not be the kidney-coordinator or other kidney staff who should draw up a plan of action on how my uncle could improve his health. I don't work for the NHS but if I can think of a solution like this why can't they.

      Again thanks for the kind message and I hope you are well too.

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