I did what I did . I did what was right.

[Metalangel28]

4.5 years and counting. I had been set up for transplant on Dec 2nd  2014. My brother was to be my donor. We were both looking forward  to it and actually building a closer relationship because of it. Then I ruined everything. On purpose. My transplant was pushed back to the 16th then cancelled completely. All because the teams feared my brother would end up with an issue using pain meds post transplant. I told them about some issues he had. I care more about my brother than myself. I cost myself the transplant. I knew they would cancel. But I didn't want to gain a kidney only to lose my brother in the process. I'm still waiting for a match. I heard penn changed their rating system that whole1-6 criteria doesn't matter anymore ( I don't see how.. it matters to me because 4 years ago that's how they explained it) I'm at the hospital now Bc my blood pressure has been dropping really low. They think it's dialysis related but no one really knows. I regret nothing I have done. I know someday i'll have a transplant. Just not today.

[iolaire]

4.5 years and counting. I had been set up for transplant on Dec 2nd  2014. My brother was to be my donor. We were both looking forward  to it and actually building a closer relationship because of it. Then I ruined everything. On purpose. My transplant was pushed back to the 16th then cancelled completely. All because the teams feared my brother would end up with an issue using pain meds post transplant. I told them about some issues he had. I care more about my brother than myself. I cost myself the transplant. I knew they would cancel. But I didn't want to gain a kidney only to lose my brother in the process. I'm still waiting for a match. I heard penn changed their rating system that whole1-6 criteria doesn't matter anymore ( I don't see how.. it matters to me because 4 years ago that's how they explained it) I'm at the hospital now Bc my blood pressure has been dropping really low. They think it's dialysis related but no one really knows. I regret nothing I have done. I know someday i'll have a transplant. Just not today.

Sounds like you made the right choice.  I'm sure you would have not liked to see your brother have problems with you walking around with his kidney.  Maybe you were wrong and he would have transitioned from the pain meds, but its best to do no harm.

[kristina]

Hello Metalangel28,
your action is very noble and it is also very recommendable,
how much you care about your brother...
I am sure that sooner or later your kind action will be rewarded
and I wish you the best of luck with everything in the future !
... I went through very similar emotions about my husband donating a kidney,
so that I may have my transplant and I became very concerned about this matter
and checked-up about my husband's health and I made as sure as I possibly can
that my husband would not suffer at all, when he is going to donate a kidney
and therefore may create a chance for me to have a transplant .
I found out, after carefully checking-up on every possible angle,
that fortunately my husband has no health issues ...
...But if my husband would, by any chance, develop anything with his health,
that could put possibly his very health at any risk in this matter,
I would have no hesitation to instantly cancel everything about the whole transplant-procedure ...
... There would be no point in putting the good health and the life of loved-ones at risk,
 when they wish to help and assist us to eventually get out of our desperate situation...
Best wishes from Kristina.

[Deanne]

 

I think you did what was right, too. If anything happened to your brother due to a known problem, you might have ended up hating that you had his kidney.

My transplant center didn't seem to care about the 1-6 antigen match either. They didn't discuss it before transplant and told me after the transplant that I think either 2 or 3 antigens matched, yet they kept talking about how great the match was. That confused me, because it didn't sound so great to me. Then they said that not all antigens are created equally. One is especially key to predicting rejection and because that one was a great match, the others didn't matter very much.

[MooseMom]

I'm sure you had the very best intentions, and I applaud you for that.

However, I am curious about something.  Did you make this decision on your own, or did your brother have any imput?  You said that this whole transplant experience had drawn you closer.  What now?  Since you made this decision on your brother's behalf, will that sabotage your relationship in any way?

If I was looking forward to essentially saving my sister's life by donating a kidney, and she turned around and told her transplant team that I had "issues", and as a result the transplant was cancelled, I think I'd be upset, especially if I didn't know she was going to say anything. 

Are you absolutely sure he would have had problems with the pain meds?  After I had my tx, I never used anything stronger than Tylenol.  I had pain meds, but I didn't need them.

Well, what's done is done, and I hope that should your brother see the problems you are having on dialysis, he won't feel guilty. 

And I hope you will continue feeling no regret. 

[PaulBC]

I've never been through this, so take my opinion with a grain of salt, but you were right not to go through with this without the enthusiastic commitment of both you and your brother.

It sounds like the decision to cancel came from your transplant team. If the main problem was a dependency issue, did they offer to provide support? I would think this is not too uncommon, and would be more effective to handle proactively. He may need surgery for some other reason in the future, and there needs to be some way to provide him with pain relief that doesn't put him at risk.

Did you have other reservations? I'm guessing yes, and that is enough reason to cancel.  If the issue was purely how to manage pain without drug dependency, I would like to think that a good medical team would be able to handle this.

Hoping you stay strong until you find a donor.

[jeannea]

I think you have to be able to live with yourself, to sleep at night. If this was what needed to be done, then it is what it is. I hope your transplant call comes soon.

[Jean]

Good decision I think. It would be difficult to watch him go downhill while you are so happy about a transplant. An yes, you did do what was right.

[noahvale]

*


 

[MooseMom]

Noahvale, I have to admit that the idea of "self-sabotage" occurred to me, too.  Thank you for introducing the question.  I hope that's not what's happening here.

[Metalangel28]

My brother had a history of substance abuse. His transplant team new about it all and he did go to rehab several times. But because he completed rehab. For other substances we were good to go. Then my mom is the one who told me about the pain med use. Which he apparently  didn't tell the team. He met with the transplant psychiatrist  again and he felt there were some concerns. The rest of the team made the final call. Ad for me sabatoshing it. No, I was looking out for him. I wasn't trying to screw up anything. I am stable.

Noahvale, I have to admit that the idea of "self-sabotage" occurred to me, too.  Thank you for introducing the question.  I hope that's not what's happening here.

[Deanne]

I had concerns about my sister donating to me, so I think I understand.

My sister told me she would lie to the transplant team if they asked her questions that might rule her out. It was a huge red flag to me. I think she has a mental illness of some sort, but I don't know her diagnosis. She acts "off," and at nearly 60, she still seems emotionally like a teenager in some ways. She's always needed more outside support than most adults to keep her on track. She was a match for me, but I think she sabotaged her own ability to donate without my saying a word. She was doing the testing remotely, so the transplant team didn't have face-to-face interaction to see the "offness" for themselves. I don't know if it came through over the phone or if they rejected her for medical reasons. Either way, I was relieved when she was rejected. I was concerned both for her well-being and because I thought it might damage our relationship if she did donate. Not because she would regret it or be resentful, but because she would drive me crazy because I thought she might try to "own" me.

[MooseMom]

Metalangel,  I'm really glad to hear this.  Your brother is lucky to have you looking out for him.  I wish you the very best of luck and a happy life lived without regret.

[Sugarlump]

There are a lot of emotional issues attached to live donations...
I always secretly held it against my younger sister for not offering me a kidney in the early stages...when I needed it.
Two failed cadaver transplants and poor health later, she suddenly volunteered to be tested.
But sadly she was nowhere near a good match so I guess it was never meant to be ... I can only dream of that twin I didn't know about living in Australia or someplace 

[kristina]

I had concerns about my sister donating to me, so I think I understand.

My sister told me she would lie to the transplant team if they asked her questions that might rule her out. It was a huge red flag to me. I think she has a mental illness of some sort, but I don't know her diagnosis. She acts "off," and at nearly 60, she still seems emotionally like a teenager in some ways. She's always needed more outside support than most adults to keep her on track. She was a match for me, but I think she sabotaged her own ability to donate without my saying a word. She was doing the testing remotely, so the transplant team didn't have face-to-face interaction to see the "offness" for themselves. I don't know if it came through over the phone or if they rejected her for medical reasons. Either way, I was relieved when she was rejected. I was concerned both for her well-being and because I thought it might damage our relationship if she did donate. Not because she would regret it or be resentful, but because she would drive me crazy because I thought she might try to "own" me.

I agree with you Deanne! If you have the slightest "gut-feeling" (instinct) that there may be an issue developing in the future,
which might make you regret your decision to accept your sister's donation, there is no point in even thinking about going ahead...
.... After all, you want to enjoy the result of a transplant, not being "knocked down" by family conflicts and deep regrets  ...
I do hope you have a chance to experience better luck soon !
All the best from Kristina.

[kristina]

There are a lot of emotional issues attached to live donations...
I always secretly held it against my younger sister for not offering me a kidney in the early stages...when I needed it.
Two failed cadaver transplants and poor health later, she suddenly volunteered to be tested.
But sadly she was nowhere near a good match so I guess it was never meant to be ... I can only dream of that twin I didn't know about living in Australia or someplace 

It is true, that there a lots of emotional issues attached to this and am very sorry, Sugarlump, that things have unfortunately developed that way...
It is very sad, that your sister did not come forward much earlier in the early stages,
since that could have given you a chance to sort out medical matters much earlier, instead of having you hoping for so long...
I do keep my fingers crossed for you, that everything works itself out in the near future, despite the recent "medical damper" ...
... Let's not forget that medical research carries on every day of the week and hopefully a positive medical answer is found for you soon!
Good luck wishes from Kristina.