[fareastY]

Hi All,
Has anybody heard or possibly experienced being a bone marrow donor?
I was contacted by Japan Marrow Donor Program (BTW I'm in Japan) last Friday about me being selected as a possible donor.
BUT, when I called the JMDP a little while ago to let them know that I've had TOS for 9 years and occasionally used pain meds (and surgery done 8 years ago), they almost exclude me from the candidate list right away After kept explaining my current condition and all, they said, "let us discuss about it. And we'll get back to you by the end of this week".
One thing I know of is that they are afraid of worsening my numbness during taking bone marrow.

Is this a common practice in the U.S. and other countries
So far, I can't find "patients with TOS can not be registered as a donor or be a donor" clause anywhere in other donor programs in other countries.

I might be removed anyway, but something bothers me a lot.

Y

[LinJane]

I have never heard that TOS patients being unable to donate bone marrow, but, my personal feelings are that you don't know what can make a TOS condition worsen. I always feel badly because I don't donate blood. Because of all medications I wouldn't think it was a good idea. I believe after having TOS for years and having multiple surgeries and lots of different meds, our bodies and immunities have been compromised. If it was a family member, I would pursue it but afraid to worsen things. I am listed as an organ doner after death but am not sure what organs could be used after years of meds.

Best of luck and let us know the outcome. Were you selected randomly or is it for a specific purpose they are looking for. I have such great respect for all who donate a part of themselves to help others.

Linda

[Jomar]

I don't think I would risk doing it unless it was for a family member.
It's probably not really about the TOS but they must consider the donors "whole health" picture.
They don't want to risk your health or the person that would get the marrow.

[michael178]

my wife was a bone marrow donor to her sister. It is a lengthy processe, involving initial blood processing but it is relatively safe for the donor. In the actual operation a large needle is inserted into hip bones and morrow is withdrawn and transferred to the other person. After this procedure, my wife also donated tear ducts which were sucessfully transplanted...other her sister could have lost her sight.

[michael178]

my wife was a bone marrow donor to her sister. It is a lengthy process, involving initial blood processing but it is relatively safe for the donor. In the actual operation a large needle is inserted into hip bones and morrow is withdrawn and transferred to the other person. After this procedure, my wife also donated tear ducts which were successfully transplanted...otherwise her sister could have lost her sight.

[DiMarie]

Hi Fareasty it is so good to read you my friend.
I have one thought that with the TOS and the challange of RSD/CRPS you could escalate your own symtoms.
So many people with just minor falls, injections, surgeries end up with RSD from the procedures.
I know you have all the best intentions, but unless it was a close family member and you were willing to take the risk of more problems, I would exclude yourself graciously.
lovingly, your friend
di

[fareastY]

Howdy all,

I very much appreciate all your comments!
A rep from JMDP told me exactly the same things as everyone pointed out.
1. The procedure might worsen my conditions
2. Long-term medication use might affect on the recipient's lowered immunity.

I don't know it's called a random selection. My HLA matched to one recipient's (or the other way around?). That's why JMDP contacted me last week.
Like DiMarie said (hi DiMarie!), RSD from the procedure has been my main concern. In fact, JMDP reported that one donor had developed RSD and the other one had developed left ulnar neuropathy after the procedure.
I, of course, backed off when I read the report, but was urged to pursue this for unknown reasons. Maybe because my sister died of leukemia years and years ago when bone marrow transplant from non-blood related individuals wasn't available here (our HLAs didn't match. We had to give up this option back then). Or I haven't contacted for over 10 years by JMDP and suddenly there is my match, and have felt some feelings toward the recipient.
I don't know why. I just can't explain how I've been feeling.

Anywho, I'll let you all know how it will turn out.

Yasuko

[fareastY]

A rep from JMDP called me a little while ago.
We talked about what to do and I decided to exclude myself this time.
TOS isn't the reason for this exclusion. Pleural tap I received when my left lung collapsed after rib resection is the cause of the exclusion.

It might sound strange but I feel like there's a hole in my heart right now.
But it's over. I have nothing to worry about.

Thanks for listening. I mean reading

[DiMarie]

Originally Posted by fareastY

A rep from JMDP called me a little while ago.
We talked about what to do and I decided to exclude myself this time.
TOS isn't the reason for this exclusion. Pleural tap I received when my left lung collapsed after rib resection is the cause of the exclusion.

It might sound strange but I feel like there's a hole in my heart right now.
But it's over. I have nothing to worry about.

Thanks for listening. I mean reading

Dearest friend,
I am so sorry to learn of your loss of your sister, of course that is why your heart would desire to help.
That is truely what matters, that your heart was so giving, We will all say a prayer, that for this person they have another match and you both will be healthier.
You are the bravest person I met in a long time to have considered this at your risk, or knowing it could help but cause you pain.

I am sure a star shines brighter for your kindness. You fill the heart with knowing that maybe the next person they contact will actully be a real good match and God's hand was at work.
di