Bone Marrow Donor - what should I do

amother

Fri, Aug 13 2010, 7:12 pm

many years ago when they did a bone marrow drive for a local yungerman I signed up to the bone marrow registry as part of a my school/seminary program. The registry is anonymous therefore the donor does not meet the recipient (unless both sides agree afterwards).

I just got a letter from them that I am a match for someone and they want me to do further testing. They could not tell me for who what where? this is an international database - The Anthony Nolan Bone Marrow Fund.

What do I do? I am mother, wife, etc. with young children

I am afraid to give up an opportunity to save someone's life. but my dh is questioning that without knowing the receipient then why do it?

amother

Fri, Aug 13 2010, 7:43 pm

I am the original OP

I do not really care who to donate to and would feel priviliged to have the opportunity to save someone else's life. My DH however, has a totally different perspective. Unless I know the recipient like a friend or relative, he would not want to see me go through General Anesthesia or the risks or to be away from my family or my young children blah blah blah so I feel very torn. He is not the type to go out of his way for anyone whilst I jumpt at the chance to help.

Isramom8

Sat, Aug 14 2010, 3:00 pm

Firstly, get all the facts. Is general aneththesia required? What is the procedure? What are the risks? I understand that things have changed over the years.

Then, ask a shaila. You may be surprised by the psak you receive.

Thirdly, my dh was called twice because he was an initial match for someone in need. But there were three tests he had to pass, and he never passed the second one, only the first initial one.

KAlex

Sat, Aug 14 2010, 3:35 pm

Yes, check with the organisation - you may well not need an operation or anaesthesia. If I recall correctly (I was on the register, but never called, before I moved, and I'm not sure I'm eligible here) there's another method where you have five daily injections (to stimulate marrow in your blood), and then get hooked up to a blood donation machine for a couple of hours. (You'll get a local anaesthetic where the needle goes in, but that wears off about the time the needle comes out, and isn't a big deal.) Something like that.

I know they use the same kinds of machines I went on every fortnight/month (the regs changed halfway through) as a platelets donor for five years, and those really aren't a big deal to be on. Basically it's a centrifuge system, where a bit of blood is taken from you, spun through the machine to remove whatever it is they want (in my case platelets, in yours - potentially - bone marrow, in others plasma or red blood cells), and then the rest of the blood is returned to you, and another bit taken to repeat the process. This is actually MUCH easier on your body than whole blood donation (it is with platelets/plasma, anyhow - I don't know for marrow, but I suspect it's the same), as there's only one component that the body has to replace.

Do what's right for you, but this may not need to be a big operation for you.

Last edited by KAlex on Mon, Aug 16 2010, 5:13 am; edited 1 time in total

amother

Sat, Aug 14 2010, 10:43 pm

I had a similar situation, where I registered years ago and got a call for further testing. I was gonna do it but my dh said no way- he was too scared for my well being and family.
so we asked a rav- I thought for sure he would side with me but waddaya know- he said I need to respect dh's wishes and if he feels so strongly against me doing it, even if I don't agree, I shouldn't do it.
so I didn't do it.

was it the right choice?
sometimes I still wonder if I wud have been a match...

Raizle

Sat, Aug 14 2010, 11:23 pm

I would totally do it unless extenuating circumstances prevent me from doing it.
I can't comprehend not saving a life if I had the capability to do it and relatively speaking it's such a small act.

However your sholom bayis is important and you need to calculate just how much this will affect it.
Can you talk your husband into letting you do it? tell him you will forever wonder about the life you could have saved if you don't do it?
Because I know I would and wouldn't be able to forgive myself if I didn't do it.
It's not like you are donating an organ that you won't be able to replace or use for someone you know.

granolamom

Sat, Aug 14 2010, 11:29 pm

call and find out what donation entails.
I did recently and found out what KAlex said.
and then I asked about bf and they said to pump and dump while on the medication adn for two weeks after so I took my name off the registry while I am nursing. now maybe some would say saving a life is more important than breastfeeding but its my choice.
so maybe for you, sholom bayis ranks high too. asking a rov is a good idea, to set your mind at ease.
and maybe when your dh sees its pretty much like platelet donation, no major surgery, he will feel differently.

shabri

Sun, Aug 15 2010, 8:01 am

I know 2 ppl whose lives were saved b/c of an anonymous bone marrow donor. All I could say is that chas vishalom, you or DH, or one of your kids were in a situation where you needed a bone marrow transplant, wouldn't you want the potential match to be willing to give?

After a yr the donation is no longer anonymous and as such I have gotten to know the donor of one of my family members. She said that the donation process is harmless--no general anastisia, no overnight hospital stay just a few days of soreness and thats it--saved someone's life.

So if I were you, before talking to DH or a rav, I would find out the details of the procedure and then you know what you are actually asking about. Also just b/c you go for further testing does not mean you are a match--=-matches have to be as exact as possible thats why its so rare to find one outside of siblings. I just don't see having hthis opportunity and not doing it (and yes I am a mother of young children so I know all about that as well)

happyone

Sun, Aug 15 2010, 10:09 am

Check what their process is. As far as I know they no longer require general anesthesia.
There is an alternate nonsurgical procedure that takes place at a blood center or outpatient hospital unit. For 5 days leading up to donation, you will be given injections of a drug called filgrastim to increase the number of blood-forming cells in your bloodstream. Your blood is then removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm. Your blood-forming cells are back to their normal levels within 4 to 6 weeks.

soldat

Sun, Aug 15 2010, 10:12 am

Just because you might be a match, doesn't mean that it will actually go through with it.
DH was contacted 3 times as a potential match, went through testing but at the end nothing came of it.

as the sibling of someone who had a BMT (actually we had a sibling match - so slightly different) I strongly encourage you to at least get the aditional testing.
once they tell you that you are a match then you can think about it further

btw, the procedure for the actual transplan is not THAT big of a deal. it is painful, you are somewhat anemic afterwards, but its not ANYTHING like a kidney transplant. recovery is pretty fast.

PM me for further info as I witnessed this first hand

imala

Sun, Aug 15 2010, 11:41 pm

Check out Gift Of Life. That is the stem-cell registry set up to get more jewish donors (Founded by Jay Feinberg).

--My DH was recently called on to volunteer. So I'm pretty familiar with this process.
--Most likely if you have Jewish lineage the recipeint is Jewish too. Minorities tend to have similar tissue types.
--Today, around 80% of donors are asked to donate stem cells via blood donation (apheresis) rather than via removing it from the hip bone with a needle (which requires general anesthsia and an operating room). The apheresis process is not a big deal.
--90%+ of the donors who do the blood-based donation are back to their full energy within 48 hours, though have flu like symptoms for some of the days getting injections.
--The risks of complications are low in both processes but the former is much less invasive and much quicker to heal.
--I wouldn't be so quick to characterize your spouse as selfish for being worried about your well being!
--The talmud says he who saves a life saves a world
--The sages teach that in the course of a mitzvah one will see no harm. (speak to your rov about the application to this instance).
--It's understandable to be less willing to go through the inconveneince for an anonymous recipient but at least the blood based process is really not a big deal.
--Even the bone-based donation process is probably not riskier than delivering a baby or any of the 100's of minor run-of-the-mill procedures requiring general anesthesia (e.g.colonscopy)
--The blood based process requires 5 days of injections to hyper growth of stem cells into the blood. There is no indication of any harm from this though long-term studies are still in process. There is the possibility that if someone has an unknown illness these injections could accelerate it.
--They will provide all sort of educational materials and you are free to opt out at any time, though giving the donor false hope and then pulling out is not ideal

Depressed

Sun, Aug 15 2010, 11:59 pm

I was called up once, but wasnt a match in the very end. Hope this isnt too harsh, but my dh says yidden are rachmonim baishonim and gamolei chasodim. He said that he read on a poster in yeshiva once that the odds of the person a Jew of eastern european descent being a match for another yid is like 91%, so for anyone to flat out refuse, you have to wonder about their yichus, if they are really Jewish or not...

amother

Mon, Aug 16 2010, 12:18 am

My mother had a cousin who needed a bone marrow transplant. The cousin sadly passed away many years ago. My mother (and father, too) decided they were not going to be tested when they were asked. I was away at school and was never told about the testing (I was too young anyway, so I couldn't have helped). Who knows if either one of them would have been a match, but they both never even gave it a chance. Maybe they were, and could have save tthis young mother's life! I felt very sad when I found out that they declined even the testing, mostly out of their own fear that they would be a match. Your case is different, obviously, but just something to keep in mind. You have a great chance to save a life...

Inspired

Mon, Aug 16 2010, 1:52 am

happyone wrote:

Do you know if you can do with a one arm machine? My veins are only good in one arm so when I gave pheresis I always had to find a one arm machine.

Inspired

Mon, Aug 16 2010, 1:54 am

soldat wrote:

Recovery is pretty fast from a kidney transplant as far as I've been told. I mean for the donor. Usually they can do it laproscopically.

amother

Mon, Aug 16 2010, 9:34 am

As someone whose child had cancer and who has seen the positive effects of these transplants first hand I cannot believe that someone would not do this if they have the opportunity...you have the chance to mamash save someone's life...with minimal risk to yourself, as they have made the entire process much easier on the donor. Please, please please, please move forward on this!!!!!

Kol Hamekayeim nefesh achas... keilu kiyam olam maleh.