Recovery Post Bone Marrow Donation

[maillotpois]

Also no personal experience with donation (though I've also been on the registry for eons), but I just wanted to say THANK YOU for being willing to donate.

As a coach for the Leukemia Society's Team in Training program, I have met many wonderful people over the years whose lives have been saved by bone marrow and stem cell transplants. THANK YOU.

As an athlete who's suffered her share of injury setbacks over the years (off 6 months because of pulmonary emboli in 2006, current recovering broken shoulder off 2 more months at least, etc.) I know how frustrating it is not to be able to train and compete at your best - and this opportunity to donate while you are on the road to a come back. So frustrating for you I can imagine!!! But you must know that your sacrifice is worth it when you actually have the chance to save someone's life by your actions. Wow!

I do hope the recovery time isn't bad (assuming you're selected). But regardless - THANK YOU!!!!

[Possegal]

My friend was in the hospital for the second donation within a day of his wife and first born child coming home from the hospital. Not the best of timing, but he didn't think twice. I emailed him and will post with a response, but I can promise you he will say "no question, you have to do it".

One of my best friend's from childhood, her oldest daughter's best friend is a CML patient. She has yet to find a match. She is Jewish and there is a problem for this subset of the population, as so many were wiped out during the Holocaust. Her donor pool is very small. Her family has mobilized though and have bone marrow registries all over PA and parts of the east coast. I know they have kept track of how many matches they were responsible for, but sadly so far no match for their daughter. Though she has been stable for years on a drug I was involved with some years back, and they are certainly grateful for that drug! But a match would be wonderful.

So I agree, as a formerly injured and still not 100% semi-athelete I can appreciate your worries. But you may have a chance to save a life, and it doesn't get any better than that.

[spindizzy]

Possegirl & Maillotpois-

Thanks for your thoughtful responses. I know that if I'm a match, I will donate..timing just sucks big time!! Perhaps the process may take a little bit and can get a few early du's in, who knows? I don't think I could live with myself if I didn't. I'm sure my coach is going to be super impressed! Two steps forward....

[Possegal]

Good for you, but we do understand your conflicts and the fact that 'thinking out loud' on a message board is always helpful.

Just had to add that my family is originally from Hamilton (when I saw on your posts where you are posting from).

[kat_h]

My sister-in-law donated a few years ago. At the time was playing on UCLA's waterpolo team and I don't think she missed much training time for it. I'll ask her about it as soon as I can, but she's hard to get ahold of right now.

[firenze11]

After my Mom's cousin told us he had leukemia, I decided to join the registry, too. His sister ended up being a match, but unfortunately he got Graft versus Host Disease and recently passed away. So first of all, thank you so much for joining the registry! It is unfortunate you can't time your donation, but if you are a match I hope it will still be rewarding for you.

I did a lot of research to see what the donation process would be like and tried to find as many donation stores online as possible. It all really depends on the kind of donation you end up doing. If you do the "classic" bone marrow donation where they drill into the hip I've heard it takes around two weeks. Marrow.org suggests you could be back to "regular activity" in a few days. I'm not so sure about that. Here's some experiences from people who have done it: http://www.transweb.org/people/marrow.htm
http://www.marrowdonor.net/

If you do a PBSC donation the recovery time is a lot quicker. I think my Mom's cousin's doctor said it was becoming a preferred method. This is the donation his sister did. Apparently the shots and days before donation are the worst because your bones can ache from stem cell production. The time on the apheresis machine is supposed to relieve the pain. My Mom's cousin, who is actually in poor health, said she felt tired after her donation and felt like "she'd climbed a mountain." I think she just rested a few days. You would probably have a much quicker recovery. Other stories I've read suggested once the procedure was done everything could go back to normal. Here's one detailed account: http://tinyurl.com/2pwwtf

Hope this helps a little bit. I'm sorry I don't have any first hand experience especially from an athlete standpoint. Good luck with everything.

[maillotpois]

Interesting side note - if you do the stem cell thing, and you take Neupogen (EPO), then your performance may actually benefit

[Trek420]

One of my best friend's from childhood, her oldest daughter's best friend is a CML patient. She has yet to find a match. She is Jewish and there is a problem for this subset of the population, as so many were wiped out during the Holocaust. Her donor pool is very small.

I'm here! I'm here! Jewish and in the donor pool. Guess I'm not a match you your friend or I'd know

Thank you for donating.

[Possegal]

I'm here! I'm here! Jewish and in the donor pool. Guess I'm not a match you your friend or I'd know

I guess not either, too bad! Kid is about 16 and has been on meds for at least 6 years I think. There is this subset of young kids with CML in the western PA area, all of Jewish decent, all of families with known concentration camp history. It is an odd epidemiological mystery that I do think is being investigated. Or so I have been told anyway.

I think this girl's family has been, naturally, trying very hard to do marrow registries through synagogues and such, to try and increase the potential pool for their daughter.

Here is a comment I found on their website:
has registered over 8,000 people...

at drives held in 12 states...

and 22 marrow donors have been found for other patients looking for a match.

I hope they find a match for their daughter soon, but I'm proud I was a part of a drug that has been keeping her healthy for years.

[maillotpois]

Out of curiosity, Possegal, what drug and what was your involvement? Do you do research or something?

[Pedal Wench]

My friend was in the hospital for the second donation within a day of his wife and first born child coming home from the hospital. Not the best of timing, but he didn't think twice. I emailed him and will post with a response, but I can promise you he will say "no question, you have to do it".

One of my best friend's from childhood, her oldest daughter's best friend is a CML patient. She has yet to find a match. She is Jewish and there is a problem for this subset of the population, as so many were wiped out during the Holocaust. Her donor pool is very small. Her family has mobilized though and have bone marrow registries all over PA and parts of the east coast. I know they have kept track of how many matches they were responsible for, but sadly so far no match for their daughter. Though she has been stable for years on a drug I was involved with some years back, and they are certainly grateful for that drug! But a match would be wonderful.

So I agree, as a formerly injured and still not 100% semi-athelete I can appreciate your worries. But you may have a chance to save a life, and it doesn't get any better than that.

I am Jewish, of Eastern European descent. What can I do to help?

[Possegal]

hey pedal wench, you should seek out a way to donate a little blood to sign up for the registry. you can probably find some info that will direct you to the right place here. http://www.marrow.org/HELP/index.html
some registry events use cheek swabs but i think most do a blood draw, and doesn't take much blood for them to register you. and thanks for asking, the more folks registered, the better the chance for matches!