Time line question...

[BigRed]

We received the call yesterday that both of my parents were blood type and genetic marker matches.
My blood didnt reject either of theirs.
So they told us that it'll new be a week or two of checking their insurances and my insurances and
then they'd run 24hr urine screens on them, and then round of '2 day hospital tests.' I presume that
thats where they'll run them through many of the MRA, EKG, etc etc tests that I've been through
2000 times.

Is this the sort of thing that should get our hopes up? Or is this just another small step out of a 100
step process? I mean, I know its progress, and its good news, and it should be celebrated. But we dont
want to get overly excited. In part, it sounds like if all goes well (big if, i know), this thing could
really happen, and happen within months, not years.  But...I also know its REALLY EASY to delude
ourselves here.

So so anyone have any insight on the rest of our timeline from here? How long any of this might take,
what comes after those tests that they do?  We're at the Emory Transplant Center in Atlanta, Ga. We all
live within just a few miles of the center, and have been a part of the Emory medical system for decades,
so ALL our records are there. We're well covered with insurance, and if I hear 'you're a perfect candidate
for transplant' one more time, i'm going to hurl....unless it is actually accompanied by a transplant.

So, are we getting our hopes up too high or is a large life change slowly coming around a near by corner?

Thanks, all.

-Daniel

[coravh]

While I don't know all the details, there are lots of other tests involved. Including a final cross match which may change and be different from the one you just aced. My cousin's work up to several months. They did admit that it took longer because a lot of it was done long distance, but sometimes tests need to be repeated and other issues can come up. I would suggest hoping for the best (a really quick result) and expect the worst (lots of waiting). Sorry I can't be more help. You know, it wouldn't hurt to politely mention to the next person that tells you what a "perfect" candidate you are that you are tired of hearing that and are more interested in the "perfect" time frame for transplant. Sometimes folks just don't think about what they are saying.

Cora

[MooseMom]

A very wise person here on IHD once said that you don't ever count on a transplant until you awaken from surgery and the new kidney is inside you, working.  I personally have heard of too many instances on just this forum of members who thought it was all a "go" until the last test showed something wrong.  Be hopeful, for sure, but also be realistic.  Matching blood types is the easy bit.  There are still many tests your donor has to go through, and the results can show all kinds of weird and wonderful things, or not so wonderful things.

I'm sorry, but I don't know anything about timelines. 

Best of luck to you, and I hope you get that new kidney ASAP.  Please do keep us posted!

[Rerun]

If everything is a go... then it will be months.  The big thing is the psychological exams where they take the donor by themselves and grill them to make sure it is what they want to do.  They don't want to take a kidney if there is any cohesion or they feel guilty if they don't etc...  So just take one step at a time and things will sort out.

best of luck.   

[cariad]

Daniel, it really depends on what sort of health your parents are in. Do either of them have family histories of heart disease, diabetes, kidney issues? Have they been told which medical tests they need, and have they scheduled those?

My donor (husband) is probably a bit younger than your parents (I don't want to know if this is not true!) but I think he just needed a renal ultrasound, EKG, and a creatinine clearance. He was cleared medically very quickly, and the psychosocial that Rerun mentioned was a non-event for him. I imagine that being we are talking about your parents, there will be less suspicion that they are doing this for any reason other than the ardent wish to see you back to health. First, which of your parents wants to be the lucky donor? Is one a better match (this is rare, but does happen)? Is one in overall better health? Usually, they only want to go forward with one donor at a time. Whichever parent steps up needs to take the initiative with this. They should be assigned a coordinator, and your parent needs to schedule the tests and keep on the coordinator to make sure that communication lines stay clear.

Since you are the same blood type, unless you are adopted you are an automatic 3-antigen match (in rare cases, higher) with each of them, either HLA I or II. HLA II has been shown to produce slightly better transplant outcomes, and males have been shown to be preferable donors to females, so if there is no other way to choose, I would proceed based on that information.

If everyone keeps on it, you could have this done in weeks, but a couple months will probably be easier for everyone. The only potential problem from what you are saying would be the health of one of the donors. If you have not had a previous transplant and do not have any blood transfusions before transplant, you will not have a positive crossmatch, so the final match should be of no concern.

Not to overwhelm you, but you're young and it looks like you will have a live donor. Have you considered trying to enroll in a tolerance trial at Emory? I went through one at another hospital, and I no longer have to take any immunosuppresants. The drug that they use, Belatacept, I met the doctor who developed it and was going to go through his trial at UCSF, but left California and found a wonderful trial in Chicago (that did not use Belatacept). Perhaps something to talk to your doctors about? If you could avoid a life time of these heavyweight drugs, you might want to at least look into it.

[Deanne]

It's like walking through a mine-field. At each step there's potential for a big "boom!" My sister offered to be a donor for me. She was a match and started testing. My hopes were high, but I was worried that she'd fail the psych test. I think she was diagnosed with bipolar disorder. She flunked the diabetes test instead. Her number was .1 over whatever it needs to be. They'll let her retest if she loses 15-20 pounds and she told me she wants to do it, but I don't think she's capapble of losing the weight. I think her mental disorders (maybe a lack of impule control?) will prevent it. That was 2 months ago and my sources tell me she hasn't made any steps towards doing anything about it.