Recovery Post Bone Marrow Donation

[spindizzy]

It's been eons since I posted. Am a duathlete. Had surgery on one knee last year. Didn't want to complain. I have been training really hard over the winter and have really improved my run and cycle fitness. After testing today, my coach said my VO2 max was up to 50, my aerobic threshold had improved and I had a lot more "metabolically" when I had to stop.

I came home tired & hungry, ecstatic that all of my hard training over the winter is starting to pay off. Then I receive a call from the bone marrow registry. About 4 years ago, I had blood drawn and placed on the registry for possible unrelated bone marrow donation. I was told there may be potential for a match of my bone marrow. Now, there still is a long procedure to go, a 30 minute interview, more blood, testing etc. But I need to prepare myself that I may be a match.

Has any athlete out there had experience with this procedure? What was your recovery time? How soon were you able to run? Cycle? I am a nurse (pediatric), so I am familiar with the procedure. But I do not know anyone that has donated. The pain I can handle; its the HUGE conflict between my desire to compete (as I couldn't last year) and the higher moral obligation to potentially help another human being.
Any expereince out there that can help me guide my decision would be really helpful.

Thanks!

[Possegal]

good for you for registering and possibly matching! i've been in the registry since the late 90s and never once matched - i joke that there must not be many irish-swedes in need! but, i have a very good friend who has twice saved someone's life via bone marrow donation. i will shoot him an email and ask him. he is not really an 'athlete' per see, but was in the navy at the time and was very physically active, so he may be able to give some insight. he is always happy to talk about his experiences!

[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.

[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.

[maillotpois]

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

[Trek420]

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

But you'll be banned from the TdF

[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?

[firenze11]

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

Wow I never put two and two together. I know someone taking Neupogen for another illness and knew basically what EPO is but never made the connection. I wonder if the dose for "performance" is way lower than stem cell production. I can't imagine bone pain being much fun to deal with.

Up here there's a big push to get people from all different ethnicities to join the national registry. When I finally got a call back from the nurse she apologized for how late they were getting to me because they were so backed up with people joining. So that's really great. Hopefully it will make a bit of a difference.

[Possegal]

The drug is Gleevec and it really has changed the treatment of chronic myelogenous leukemia dramatically. I was involved from a regulatory end in its approval for use in the US. It isn't a cure, but it is a treatment that is better tolerated than the previous standard therapy and people have responded to it for many years.