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Transplants Bone marrow and stem cell transplantation

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  #1  
Old Sat Apr 13, 2013, 10:48 AM
edithr edithr is offline
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transplant donor backing out

Bone marrow transplants are the only organ transplant situation (I believe, correct me if I'm wrong) where you are told there is a match before they ask the donor if they will donate. I've heard of several cases where a person in need of a transplant is told there is a perfect match, and then the donor backs out. This must be heart wrenching. So, do you think that Be The Match should change their policy to asking the donor before letting you know if you have a match?

Take Joe the Plumber. He needs a heart. There is a horrible car accident, and a heart becomes available. The transplant team asks the family if they can harvest the victims heart, they say no, and that it the end of it. Joe never knows that a life saving heart (a perfect match) was there, but for the families decision, he will not get it. Is that better for Joe? Is ignorance bliss?
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Edith, mom to Eric, dx 2/11 at age 15 with SAA, began ATG/CsA 3/11, switched to Tacrolimis 8/11, off all meds 9/11 and is now considered to have bone marrow failure not otherwise specified.
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  #2  
Old Sat Apr 13, 2013, 01:45 PM
sstewart09 sstewart09 is offline
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Hmmm...that's an interesting question. Not sure what side I'd be on. It was devastating to find out that my husband's brothers were not a match, so finding out about all of his potential matches was the mental boost we needed. At the same time, we had a donor fall through and that was heartbreaking too. Not sure what the solution is.

I think a lot of people use Be the Match for testing for an individual person. People get signed up willing to be a match for that person and forget that they are now in the national donor registry. There are also a lot of active military in the registry. The military is where Be the Match started which is great, but when these people are deployed and end up being a match for someone, it can be disappointing as well.
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Samantha, wife of Joe age 34; diagnosed vsaa 2012; MUD BMT February 2013
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  #3  
Old Sun Apr 14, 2013, 12:13 AM
Neil Cuadra Neil Cuadra is offline
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As I understand it, the National Marrow Donor Program provides status information to your treatment center's transplant coordinator when donors are identified, contacted, and when they accept, decline, or (in the worst case) back out after initially agreeing. The transplant coordinator then informs the you (the patient) and your family. I assume that one reason they pass the information along promptly is that your treatment decisions can depend on it. For example, if you have a potential donor, even one that hasn't yet been contacted, you might hold off on a chemo treatment that you would otherwise choose to start.
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  #4  
Old Mon Apr 15, 2013, 01:10 AM
NLJabbari NLJabbari is offline
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Personally, I've always known that a "potential match" only means that the person is registered as a "Potential Donor" but that does not guarantee that they will be available or willing should they be called upon. I think most people who register do so with the intent to follow through if need be. But, sometimes for various reasons they're either not able to or not available. I can respect that...

I am thankful for the registry and for those who have willingly and voluntarily listed themselves as "Potential Donors". Bless them!

We were informed that my son had 2 potential 9/10 MUD's on the registry. They were not informed because we still had other options to explore before considering this route.
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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  #5  
Old Mon Apr 15, 2013, 11:01 AM
KathyM KathyM is offline
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Interesting question. It’s a tough one, for sure. My H was originally told there were 10 matches for him. Within days – 7 people declined. We weren’t bothered by that – I’d much rather someone make that decision right away rather than wait and provide false hope. And yes, who knows what the circumstances were – change in health, etc. I do believe that family members who agree to be tested should be told they are now in the registry and they should make a decision if they want to stay in the registry.

The worst thing is when the donor backs out, which is what happened with my husband. A donor was identified and contacted and tested. One week prior to the scheduled transplant he backed out. Can you even imagine the devastation? Believe me, I completely understand the need for anonymity now! Backing out at the 11th hour – oh my gosh – unbelievable. Thank goodness the 2nd donor has stepped up.
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Kathy, wife of Dennis (58 yrs old) diagnosed October 2012 w/MDS; bone marrow biopsy confirmed significant fibrosis;blast cells of 5%-10% of total cells, high risk refractory anemia w/ excess blasts (RAEB1); 3 cytogenetic markers; +1, -7, and +21
http://www.caringbridge.org/visit/dennismolyneaux
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  #6  
Old Tue Apr 16, 2013, 03:32 PM
4bcsboys 4bcsboys is offline
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marrow versus PCSC

Some people may register, listing that they are willing to donate PCSC, but not wanting to have marrow collected in an OR. A family friend is registered this way. I don't know if all these potential donors show up on the preliminary search or not.

This is something I'm wondering about because I'm waiting on a match. My sister received the opposite genetic materia from BOTH parents. I'm trying to laugh over that one.
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Wife and mother of three young boys, diagnosed at age 39 with AA 2007; treated with ATG and cyclosporine; progressed to MDS end of 2012; MUD on June 26, 2013.
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  #7  
Old Tue Apr 16, 2013, 08:58 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by 4bcsboys View Post
This is something I'm wondering about because I'm waiting on a match. My sister received the opposite genetic materia from BOTH parents. I'm trying to laugh over that one.
Yeah, you have to laugh so you won't cry. My wife's brother and sister matched each other, but neither matched her.
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  #8  
Old Mon Apr 22, 2013, 09:35 PM
pedro pedro is offline
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I was booked for "mud"bmt but found out the day before I was to have hospital tests that the donor was default for medical reasons . Thankfully the atgam treatment started to kick in and seven months later the cyclosporin is still working to keep my cell numbers up so that i am nine months since last transfusion. All the same it was a emotional time to go through from deciding to go though with bmt to finding out it was not going to happen,to having my cell numbers increase to a sustainable level.
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  #9  
Old Tue Apr 23, 2013, 01:46 AM
Neil Cuadra Neil Cuadra is offline
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Pedro,

I'm very glad to hear that your immunosuppressant treatment is working. Things must have looked rather bad for you right after the transplant option was pulled out from under you. The way you've bounced back could give anyone hope!
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