I am not sure...

[Brightsky69]

Hi everyone,

Well....I have a cousin that seem to be pretty serious about getting tested to be my donor. She has already called the living donor coordinator in my area. She answered the preliminary questions with flying colors. And she had the blood test kit already.
I don't want to get my hopes up you know. I can see how people get comfortable on dialysis and think twice about a transplant. Don't get me wrong, if she is a perfect match I am taking it.
But I am a little nervous. What if something goes wrong or what if she is a match them she doesn't want to do it. I wouldn't blame her at all. It's a hard core surgery. What if it rejects and I have to go back to PD? I worry about too much scare tissue and then not being able to go back to PD. If I had to go to hemo.....I'd have to give up so much. I kinda like my job. And right now I am going to school. I sould be excited but I can't help but to worry. So many things could go wrong.

[Des]

I Hear You!

This is the most difficult thing.... the "what if's" are driving me crazy.
My live donor is a match and she has started her preliminary blood tests for the work-up. The results have been available for 3 weeks now..... she did not phone them to get it...... I am to scared to remind her.. I don't want it to seem like I am pushing her or something.   

I know I did tell her that if she changes her mind anywhere along the road I will not blame her or hold it against her.

From this experience ... I can tell you one thing that is definate, NOTHING IS GUARANTEED. Do not rely on it as the only treatment. You have to be ready for anything. Transplant, PD or even HD... If you get all the info about everything you take it as it comes. Do NOT put your heart on one thing/person only.

I hope this helps

Hugs 

[RichardMEL]

BS - I have been there with my sister.

The way I approached it was to not worry about the what if's at the early stages of testing. The main thing to be thankful for was the desire of her to want to be tested and to get on to it. I was so thankful that she wanted to do it and she made the effort(like your cousin). Yes, i thought about all those what if's, and also my own personal responsibility should the transplant have taken place and down the track something bad happened to her that could be traced to her donation... but then I thought about it more and she was aware of that kind of risk(small) and was willing to still give... it's the flip side of the coin of those of us who seek a transplant - it may go wrong, it may reject, or it may work for 20 years... if we are willing to take that risk, why not accept that of our loved ones who are also willing to make that risk - for us? That doesn't mean it is easy!!! Anyway I tried to not think of all those scenarios while testing was going on because I was well aware that she could be knocked back at any point along. Of course as testing proceeded further and further and at each test she passed then things started to look much more "real" for me and I too started wondering more about those same things. How would I feel if it rejected? How would SHE feel? How would we handle that? I sure as hell wouldn't blame her. I'd still love her for the effort to donate and it would have been one of those bad things. I don't know. In the end she was rejected at the last stage comittee decision because her BP was *slightly* elevated and they were concerned enough to knock it back. I was not unhappy with the decision, and even a little relieved that I at least wouldn't be worrying about her that if something happened maybe it could have been prevented if the donation didn't occur...

Then again life is full of risks we take every day. Who is to say that something totally unrelated might happen, or chances are more often than not that the donor will be fine and live a long and happy life.

My advice to you at this stage is to support your cousin in her efforts knowing that she may get knocked back down the track OR may change her mind(and there is no shame in that to my way of thinking). Try not to get your hopes up at this point though and try not to think of the what if's until the time comes that it might actually happen. Part of the testing is the infamous psych test and you can discuss those feelings around that time if you need to (or arrange to discuss with the renal/transplant team social worker if you like). Your cousin is offering something beautiful and while there are risks... there are risks in every day life, as well as the risks of just staying on dialysis (had a code blue this morning in the unit - a guy stopped breathing on the machine?!?!?!).... So I'd say go for it.. even if things do go pear shaped you still have the option to go back on dialysis.. The chances for a better/more normal life with a living donor transplant are wonderfully good, and I know it's an option I'd take up if I could get it and go with the risks because the benefit (as I see it) would outweigh those risks.

Go with your heart.

[Brightsky69]

I plan on talking to her tonight. I do want to let her know that if she gets in hip deep and realizes that it's just too much for her....I have no problem with that. She can sign off at any time and I am still gonna love her as my cousin.
This morning she went in for blood testing. We have to wait a week to see what the results are. Whew...I am gonna try not to worry.

[cariad]

At my transplant center, they claim that if a donor ends up needing a kidney, that they will immediately go to the top of the transplant list. I would ask about that - is it true? Is this a national rule or center-specific?

I would also talk to your cousin about your worries, and see if she is equally concerned about these issues. It is difficult to make the idea of dialysis real to someone who has never experienced it. Personally, I hate it when my husband (my future donor) answers my direct questions about dialysis with vagaries. I want him to tell me explicitly how he will manage if this becomes a reality.

I like Richard's advice about not getting too far ahead of yourselves with worry. Your cousin can back out at any time, but so can you. If she goes through the tests and is approved, you can still tell the transplant center that you are not comfortable with this option and want to wait for a cadaver/stay on dialysis/go with another donor.

Please do be careful about discussing this at the psychosocial eval. I really think this is the sort of thing that is best discussed with your own private therapist with no affiliation to the hospital. Those social workers and psychiatrists are not your therapists, they are there first and foremost to judge you, which rather conflicts with getting anything useful out of them. If you just want facts about risks, then speak to the transplant doctors, but again, do not kid yourself into thinking that this is an objective opinion. Actual response I received from a transplant surgeon when I asked him what are the risks of donating a kidney: "There are none."

I think for the psychological eval, it is best to not seem conflicted about your decision. The only questions I remember being asked about the donor were about whether we had a strong relationship or not. If they did not ask me a specific question, I was not going to give them any more information than they requested. (Can you tell I think this part of the eval is idiotic?)

The risks to the donor do seem to be quite small, and the overall impact on life minimal. I have mentioned before that my original donor is still alive after 33 years, still fine, and decided to donate bone marrow to a stranger 20 years after donating a kidney to me. I wouldn't be in the least surprised if he were to donate a lung or part of his liver in the future, and after he passes away, I have no doubt that it will be "take what you can use, and give the rest to medical science." Some people are like that....

Good luck speaking with your cousin! Keep us updated! 

[Brightsky69]

Today I found out my cousin was not going to be a match for me. The freaky thing is....I already knew it.

In my "gut" I knew she would not be a match for me. I already knew it! My intuition was telling me that no...she would not be giving me a kidney.