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-   -   Possible Match - Q from a donor (http://forums.marrowforums.org/showthread.php?t=6558)

Nobody Sun Oct 18, 2020 10:15 AM

Possible Match - Time Frame Question
 
Hey everyone,

I recently got "the" phone call to tell me I'm a possible match for someone out there. They took several blood samples for further testing on October 5th, but haven't heard anything since.

So I'm just wondering if anyone knows how long it usually takes before I could hear something again? (I realise I'm not guaranteed to hear anything.)

Cheers,

Neil Cuadra Sun Oct 18, 2020 06:25 PM

First of all, if you are willing to donate stem cells or bone marrow to somebody undergoing a transplant, you are definitely a Somebody, not a Nobody! I admire you for your generosity toward a stranger in need. My wife is alive due to people like you.

There are likely to be four things going on:
  1. Testing if you are a confirmed match. That depends on your HLA (human leukocyte antigen) proteins, not on your blood type. You might be a non-match, a good match, a great match, or a perfect match.

  2. Checking if you are healthy enough to make the donation, with interviews and a full medical history. Expect them to ask you more than once if you are sure that you are willing to donate.

  3. Deciding if you are the best available donor, since there could be other potential matches.

  4. Scheduling. They may have contacted you as a potential match even if the recipient isn't at the stage where a transplant is definite.
If you are confirmed as a match and healthy enough to go ahead, they may or may not ask you to make the donation soon or at a later time. Most of the decision-making is on the recipient's side, since it all depends on their treatment schedule, and if and when they can undergo a transplant. My wife's bone marrow donor was contacted by Be the Match and agreed to donate, but it was 2 years before the donation finally occurred.

I'd expect that you'll hear back soon about whether or not you are still a potential donor. But even if that's confirmed, you might not be called to make the actual donation for some time. It's fine to ask questions of the people who contacted you, although they'll reveal very little information about the recipient.

I wish you luck, and good luck to whoever patient is as well.

Nobody Mon Oct 19, 2020 06:13 AM

Thank you for your detailed answer.

And wow, 2 years. I never expected it could potentially take that long.
I've received a lot of information already, but all pertaining to the donor's perspective. I just assumed most patients would be in bad state and this would be an ASAP kind of situation.

sstewart09 Thu Oct 22, 2020 10:51 PM

My husband needed a transplant ASAP, and from diagnosis to BMT, it was only 2 months. He had a European donor, too, so we are fortunate things were able to move so quickly. Please keep us posted! It takes a special kind of person to even consider doing something so selfless for a complete stranger 💜

GoodDay5150 Tue Oct 27, 2020 11:24 AM

As a potential donor, you are definitely not a Nobody. I was diagnosed w/ a rare disease in the Spring of 2011 and it was decided that I was a good candidate for a transplant. A perfectly matching donor was found for me within 4-5 mos, but the actual transplant was not performed until December of 2011. I was told that in some instances multiple potential donors may be found if it is determined that a back-up donor may be required. In respect to myself, the donor was such a good match that there was no reason to find a back-up donor. I have never met my donor, but I was able to thank another donor at the hospital/ clinic where I go who was donating for a stranger.


Mario

Nobody Wed Oct 28, 2020 07:41 AM

Thanks Samantha and Mario for your stories.
I still haven't heard anything, but since these time frames seem to vary widely that doesn't mean anything. For those interested, I will update if anything changes.

Btw, does anyone here know for which reasons the doctors might choose to go for a BMT over the more common PBSCT? They've already asked me multiple times if I was opposed to a BMT, but I forgot to ask the doctor that question. It's all the same to me and would mostly come down to whichever method gives the patient the best chance.

P.S.: 'Nobody' wasn't meant to sound negative, but something like 'nobody in particular, just a regular Joe'. Just needed some username to remain anonymous and I'm not particularly imaginative. :)

Neil Cuadra Sat Oct 31, 2020 01:03 AM

Quote:

Originally Posted by Nobody (Post 53876)
Btw, does anyone here know for which reasons the doctors might choose to go for a BMT over the more common PBSCT? They've already asked me multiple times if I was opposed to a BMT, but I forgot to ask the doctor that question. It's all the same to me and would mostly come down to whichever method gives the patient the best chance.

Either method can meet the transplant goal to give stem cells from the donor to the recipient. A PBSCT is more common, but there are two primary reasons that one type of transplant or the other might be performed:
  1. The donor's ability and willingness to undergo the procedure.

    With a peripheral blood stem cell transplant, donors are given injections of filgrastim (best known by the brand name Neupogen) to release bone marrow stem cells into the circulating blood, where they can be taken out much like a platelet donation. Neupogen can cause temporary minor side effects like fever or nausea.

    With a bone marrow transplant, donors undergo a surgical procedure under anesthesia. After-effects typically include hip soreness and aching for a few days.

  2. The needs of the recipient, which may give an advantage to one method over the other.

    For patients with AML (acute myeloid leukemia), for example, a PBSCT reduces the risk of graft failure, but a BMT reduces the risk of the disease called GVHD (graft versus host disease).

    For that reason, depending on circumstances, the patient's medical team may request one method or the other.

Richard Lin Sun Nov 1, 2020 09:21 AM

Thank you
 
Also greatly appreciate your altruism to serve as a potential donor. We need more donors like you!

Nobody Mon Nov 2, 2020 06:50 AM

Thanks for another detailed answer, Neil. :)

Nobody Tue Dec 1, 2020 09:21 AM

Finally got some news today!
Since they just sent me a letter I assumed it would be a no-go, but I am a confirmed match and have now been reserved for a period of three months.

That's all the information I have at the moment. No idea how well I match or anything else.

@Richard: Sorry, must have missed your message last time. You're welcome, but I firmly believe I'm just a small part. The doctors/scientists who make all this possible are more important. That being said, the world would definitely be a better place if everyone tried doing something good from time to time. :)


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