Kidney Donor- I need some advice

[mikemcg93]

Hello

This is my first post on this forum so not sure if this is in the right place.

My uncle has been on the kidney donor list for a few years but his health has deteriorated in the last two years so I offered to be a live kidney donor. I had tests to see if we were a match and we were. I then underwent an extensive amount of tests (which I'm sure you are all aware of), everything was fine. The kidney co-ordinator did explain that I may need this kidney later on in life and to think about if there were ever any implications with my children if I have any in the future. I was adamant to still go ahead with it but she wasn't very supportive. The operation was set to go ahead October 2014 and 2 weeks before hand it was "cancelled".

Then in December 2014 me and my uncle had to go and see a doctor to be assessed to see if we were fit for the operation. Checked our pulses in our legs etc. I was fine and fit for the operation but they told my uncle he wasn't. However he was only there a couple of weeks before to be assessed and at that time he was healthy and fit for the operation. We had this assessment seperately and when my uncle came out he was quite upset and kept telling me I didn't have to do it.

The reason he was so upset is because they kidney co-ordinator and doctor were saying that I have put my life on hold for him and I have missed a job opportunity because of him (I decided this was more important to me than a job so declined the job offer). I told the kidney co-ordinator about this and told her I didn't want to tell my uncle because I didn't want to make him feel guilty. Then she goes ahead anyway without my consent and tells him. She also told me "We've put him back on the donor register". Which I told her I thought was very selfish as there are many people that need that more than he does because as soon as he is well enough I will do it that day if possible.

Since then I have heard EXTREMELY little in regards to the operation and had little contact with the kidney co-ordinator. I call her, she doesn't answer. My uncles health has deteriorated further due to his kidneys failing. He has now got problems with his heart and his valve is leaking. The doctor who examined him said he doesn't think they will operate on his heart because it isn't bad enough. I called the kidney co-ordinator 2 weeks ago to find out whether the operation can go ahead or not. She didn't have a clue, telling me it isn't that simple. Well, yes it is. His heart is either capable of having the kidney operation or not. She said she will get back to me the next day and she never did. I called her again two days ago and now she is on annual leave till 2nd November.

My uncle spoke to a doctor today whilst he was on dialysis and he said it is unlikely the operation will go ahead. I don't know what I should do or who I should speak to because if they gave him the operation last year he wouldn't  have had problems with his heart and he would be healthy.

I am really upset about this and I genuinely feel like they never wanted this operation to go ahead. Maybe because I am 22 and still young but I am an adult and can make decisions for myself. I want to take this as far as I can, I don't want to let them get away with treating people like this.

Sorry about the long post but I just need some guidance on what steps I should take, any help will be greatly appreciated.

Thanks all

[CK]

Perhaps your uncle could get a second opinion from another transplant center?

It sounds very odd to me that they would actively discourage you from donating. They certainly did talk to me about the risks and benefits, but never did I feel they were discouraging me from donating completely.  They told me that if I didn't want to donate, they would effectively "lie" for me and tell my recipient (husband) that I was not able to donate.   After I did donate, the surgeon pulled me aside and told me that he didn't want to sway me one way or the other while I was making a decision by saying this, but that I had saved my husband's life by donating.

Again, a second opinion sounds best to me.  Something doesn't add up here, as if people aren't being honest with you.  While it's a major decision and they are right to get you to think about the long life ahead of you - and they should be honest about your uncle's prognosis as well - it shouldn't feel so coercive to you.

[elephant]

Dear Mike,

I am sorry that your uncle is unwell, and that you have been frustrated in your desire to help him.

You are quite young.  Unfortunately there is insufficient information about the very long term impact of organ donation. 

You could help your uncle seek additional medical advice about both his kidney and heart conditions.

I donated to my Dad, who lost his kidneys due to medications he was given for a heart transplant.  The heart transplant was due to a virus that damaged his heart.  In addition, he was in his mid-70's at the time of donation.  I'm mentioning this to point out that different hospitals may have more or less ability to deal with higher risk patients.  We had our surgery at Columbia Presbyterian in New York.

Love, elephant

[cupid]

Do you have a donor advocate independent of the hospital/transplant center? I would talk to that person about all of this. His/her job is to advocate for YOU

[mikemcg93]

Do you have a donor advocate independent of the hospital/transplant center? I would talk to that person about all of this. His/her job is to advocate for YOU

I do and she isn't very helpful. Lst year when the operation was set to go ahead I received a job opportunity for a good job but decided to decline as this was more important. My Kidney Co-ordinator went and told my uncle that I declined a job opportunity and that I am putting my life on hold for him.

[mikemcg93]

Dear Mike,

I am sorry that your uncle is unwell, and that you have been frustrated in your desire to help him.

You are quite young.  Unfortunately there is insufficient information about the very long term impact of organ donation. 

You could help your uncle seek additional medical advice about both his kidney and heart conditions.

I donated to my Dad, who lost his kidneys due to medications he was given for a heart transplant.  The heart transplant was due to a virus that damaged his heart.  In addition, he was in his mid-70's at the time of donation.  I'm mentioning this to point out that different hospitals may have more or less ability to deal with higher risk patients.  We had our surgery at Columbia Presbyterian in New York.

Love, elephant

I have called the kidney co-ordinator and awaiting a meeting with her. I feel I may have left it too late and wish I came onto this forum when it first started and he was well enough for the operation. I've never had to deal with anything like this in the past so didn't think to ask for a second opinion and now I believe he is too ill to have the operation. I'm in the UK. Do you or anyone else on here think I should make a complaint about the kidney co-ordinator and her lack of communication skills and for also passing on confidential information to my uncle that I told her in private. I received a job opportunity but didn't tell my uncle because I declined it to go ahead with this operation and didn't want him to feel bad. Then she went and told him anyway and put it in these words, "Do you know he has missed a job opportunity because of you and has put his life on hold because of you". Horrible for my uncle to hear. This was last year though and again think I may have left it too long.

Thanks for all the help in this forum!

[elephant]

Dear mike,

Perhaps her comment was inappropriate, but not illegal or flagrantly unethical?  I don't know the situation.  Would complaining help the situation for you?  Or cause further anxiety? 

When you meet with the coordinator, I'd be careful about approach.  I've found it very helpful to avoid confrontational language and instead appear to ask for help.  So I would say "Please help me, I do not understand..." rather than "You should not have said..."  That way you do not put the other person on the defensive, and if you truly did not understand you'll get an answer. 

You have not failed, but have succeeded in offering of yourself.  Not every proposed donation is completed.  Nevertheless everyone who volunteers to donate is selflessly giving.

Love, elephant