Thursday, July 24, 2008

Donor search results

The results are in, and they found three potential 6/6 matched donors and also a fully-typed 9/10 matched donor. This sounds totally great, but read on. The devil is in the details.

What this means is that there are three people who match 6 of the 10 antigens based on their preliminary typing (most registries only type donors for 6 antigens) and one person who has already been fully-typed who matches 9 of the 10 antigens. A 10/10 donor is ideal, but a 9/10 donor can sometimes work just as well.

So several things are possible at this point:
  • the donors can't be reached because they moved and didn't update the registry
  • they're no longer eligible because of age or they end up failing the physical exam required for being a donor
  • they turn down the request
  • the three partial matches don't match well once they are fully typed. For example, it's possible that they end up matching only 6 of the 10 antigens or any number between 6/10 and 10/10.

The other sort of amazing, and at the same time somewhat sobering, thing to realize is that these are the results of searching the *entire* worldwide database of (10 million) users. So unless a new hit comes up between now and the transplant (they check everyday), these 4 people are the only potential donors we're dealing with. It's a little scary to think about. We're sort of freaked out.

If we don't find a match there are other, more exotic, types of transplants available such as cord blood transplants that don't need to be so closely typed. The downside is that the hospital stay can be longer and there are increased risks. But it's an option.

If it's surprising that there are only 4 results, it was surprising to me too. I expected either thousands or zero. The chance of just 4 seems awfully low. I asked about this and the search coordinator said “your HLA typing isn't what's normally seen in the donor pool of approximately 10 million donors worldwide.” But she was quick to point out that at least we *had* results.

Also, I don't have the contact info of any of the donors and I'm not sure what their policy is about that. I do know that there are transplant recipients who have kept in contact with their donors after the transplant, but it may be that contact is only possible once the donor is agreed upon. I'll check more on this, since I'd personally want to enlist the help of everyone I know to help track down potential donors in case they moved and the transplant center couldn't find them!

So while the results aren't great, at least there are *some* results. So please cross your fingers, pray, do a tribal rain dance or whatever it is you do to see if we can get all the stars to align just right for this.

That’s all I know for now. Over and out.


obscurity said...

Wow, that's really a sobering finding. Is that 9/10 a close match than your sister was? I'm actually a bit relieved - because I was still afraid that there would not be such a good match out there - regardless of situation their health, willingness, etc.

Well if its any help, my typing kit went in yesterday. See all the problems are solved, because I'm gonna be the match, and it will all be good ;) [note to George: "Suck it" ]

They say in the kit that they will allow anonymous communication between the donor and recipient, up to 3 times in the first year. The second year I think it increases, and after that, if both parties are interested, then they will make the introduction.

Steve Rider said...

Cool, I saw your facebook status about the marrow kit. You better stay off the cocaine until I get a transplant just in case you're the match, heh. Wouldn't that be cosmic?

So yeah, I don't know how close Cindy was a match, but I assume 9/10 is pretty good since they only found one.

Interesting about the communication policies they have in place for donors and recipients. It's amazing they even have a policy at all. It must be a pretty common request.

George said...

At first I got really excited and started thinking about using some of the statistic skills I have learned. But then I realized I still hadn't sent in my kit yet... so first things first.

Steve Rider said...

Dude send it in! We could be a match!

Beth said...

Hang in there. Clean living will overcome and a donor will be available. Positive outlook for sure.

Steve Rider said...

Thanks Jeff. We are keeping our eyes on the horizon and I think with a little luck and perseverance everything is going to turn out ok.

Nic said...

Sadly, my "Star aligning ray gun" was taken by home land security... some crap about 'throwing off gravitational pull,' I don't know, I'm not a scientist... never-the-less, toes and fingers will be crossed...

Josh and Leslie said...

Josh has ordered his kit but I cant register because I had surgery in the past 12 months hopefully he will be the match your looking for. Our thoughts and prayers are with yall every day.

Josh and Leslie

Cindy said...

It could very well be that one of those donors is a perfect match, and are around and available and willing to donate. There is no reason why not! I hope we hear the news on that soon. I really wish I had been a match, that is really disappointing.