Anyone Donate Bone Marrow Before???

[megumic]

So I am on the bone marrow donation list for Be The Match http://www.marrow.org/index.html and have been for several years. Lo and behold I received an email today that I may be a match for someone in need.

I was shocked, overwhelmed, excited, and scared all at once! I never imagined I could ever even possibly be a match considering the chances of being a match for a non-family member are about 1 in 20,000. I still may not be a match...but just the idea that I might be able to give someone hope is incredibly humbling. So I immediately called the number, confirmed my interest and answered all of their health-related questions without a hitch. I should hear back within three weeks...

Has anyone ever donated bone marrow or stems cells before?? Or has anyone been a recipient or known someone who was a recipient??

 

[mayerling]

I've never donated but I am on the donor list and have been for over ten years. No matches yet but I'd like to think that if I were a match I'd do it in a heartbeat.

 

[Blackpaw]

Wow megumic that's so exciting im on the list too and would love to be a match for someone, its such a blessing. Ive thought about how id feel if i matched someone and i know id be excited but that there would be fear there too, good on you for being so strong and i hope you end up being a match.

I dont know anyone who has donated or received bone marrow. I really appreciate that there are people out there who will do it though - my SO was diagnosed with kidney disease last year and he will need a transplant in the near future. Im so grateful that there are people out there who'll do these things for others.

 

[Miss Sparkly]

My coworker almost had to. She said that it is very painful and invasive. They cut into her hip bone, inserted a scraper thingy and scraped the bone marrow out of the bone just to test it. I can't imagine actually giving a decent amount. It would have gone to her niece who contracted Parvo and become severely anemic. Thankfully she began producing her own blood again after a month in the hospital. I can't remember what they said the success rate was. Hopefully all goes well for you and you're able to help somebody in need!

 

[vc10um]

meg, I hope that you are a match!

And this thread reminded me to update my contact information on the National Registry. I hope someday I'm given the opportunity to help someone this way!

 

[Attached]

It really is a wonderful thing that you are doing. I have not have a bone marrow procedure done before, but my fiancée has. He did not donate... He had to have the procedure because he had cancer. From his opinion, he said that it did not hurt at all because the doctor had done this procedure a thousand times before. The doctor said that if the doctor knows what he/she is doing, it shouldn't hurt at all. I hope and pray that you will be a match. Give us an update on how things go.

 

[annadragon]

Please, please, please do this!

I have a dear friend that died this past December of her aplastic anemia.

The fact is, there are many things medically speaking, that might ultimately cause the demise of this individual. This was the case of my friend. She receive a bone marrow transplant from a total stranger in Germany (she was located in the US). However, it was CERTAIN that she would die without a transplant. She engrafted! This was the best part, because it worked! Had she not succumbed to other circumstances that bone marrow transplant would have saved her life. It did for a small while.

If you can give this gift, please do so. It really does mean so much to the family, friends and individual involved.

I applaud your willingness to do so!

 

[rainwood]

Megumic -

I'm sure someone will be very grateful that you're willing to donate. My husband is going to be having a stem-cell transplant in the next few months (assuming everything works out with a donor). We're very grateful that so many people have signed up and that there is someone who is an unrelated perfect match for him.

The procedure Sparkly Blonde mentioned is a bone marrow biopsy. My husband has had at least half a dozen, and as another poster said, they aren't particularly painful if the person doing them is skilled. Harvesting stem cells is a different procedure - more like kidney dialysis - and isn't painful.

Having someone I love be in need of a transplant makes me so grateful for everyone who has signed up for the registry. The more people who sign up, the more potential matches there are. It can be particularly important for those who are minorities or of mixed ethnicities because the donor pool is so much smaller that the chances of a match are also much smaller. Thank you, Megumic, for being willing to help save someone's life.

 

[megumic]

Thank you to everyone who has responded! I actually didn't expect much traction on this thread and I was clearly wrong! Thanks everyone for your encouragement. It means a lot! The few family and friends I've told have responded with, "Doesn't that hurt?!" I was kind of surprised they weren't more immediately more supportive...

If I am in fact a match and the recipient in need is moving forward with a transplant, I'm entirely on-board. The screening woman asked if I was pregnant (which I'm not), but as many of you know, I'd like to be pregnant soon. Without even a second thought I knew I'd be willing to hold off on my pregnancy if I am truly a match.

Rainwood - best of luck with your husband's stem cell transplant. I have a friend who had one and it was a success! Dust and prayers!

Annadragon - I'm sorry about the loss of your friend. It is encouraging to know that she survived longer than she would have because of a donor.

Attached - thanks for your husband's advice! Yes, if I am a match I will be sure the surgeon knows what the heck he is doing so it is the least painful possible! Is your husband a cancer survivor?

Thanks for all of the support. I see this as a real opportunity and I felt myself getting all shaky and emotional the moment I opened the email. I know it still may not work out, but the concept just makes me feel so thankful for my healthy body that works without failure every single day and that I have the means to make sure it stays healthy, exercised and well-nourished.

I will keep everyone posted!!!

 

[Jennifer W]

Megumic, I'm late to this thread, but I wanted to say that I think you're doing an amazing thing. A dear friend of mine is alive today because of a stem cell donor, and if you have the courage to give someone like him a better and longer life, you're a pretty wonderful person in my book. It isn't just the recipient who'll be indebted to you, but everyone who loves them, too.

 

[Strawdermangrl]

Megumic- First, THANK you for being on the list. My mom received a stem cell transplant and very soon after received a full AUTO (anonymous unrelated donor) bone marrow transplant back in 2000- it gave her another 10 years that the doctors didn't think she'd ever see.

I have been on the BMD list since '99 and got a call about 2 years ago, I was a highly likely match for a sweet little boy who was in Europe. Nothing ever materialized based on the medical procedures in place overseas but the fact that I was called made me feel all of the emotions you have. I was in tears, I wanted it SO badly. I wanted to give someone a gift like the one that my mom's donor was able to give us, even more so- a sweet INNOCENT child who needed time to be a kid! Play in the dirt, not watch everything under a microscope and worry about the smallest germ.

The thing that blew my mind the most was how FLOORED the lady that was my contact was when explaining what would go into donating. It is a pretty invasive process but well worth it, in my honest opinion. BM donation involves a lot that is more in the recovery phase but at the end of the day we are all on the list to give life so even if we are laid up for a bit, isn't the outcome the best part? She told me that a lot of the time they tell people of the procedure and that it does, in fact hurt, and they back out! HOW could you back out!?! How could you put yourself on this list, give the HOPE of a match and withdraw because it might hurt?! I digress, but shocked me, nonetheless.

I hope, pray and wish that you will hear that you are a match and will offer someone the beauty of a second chance. You are wonderful for putting yourself out there, so exciting and I know it might sound silly- but since this is something so near and dear to me, I am PROUD of you for being a part of this movement!!

 

[MichelleCarmen]

My dad died from Leukemia. I think it's wonderful that you may be a match and that may lead to a donation which will save a person's life.

My aunt (DH's sister) was a match, but my dad had a very aggressive form and by the time it was decided to try for a transplant, he was too weak. He was DX in Aug and died in Dec on my b-day, no less

 

[MichelleCarmen]

Megumic -

I'm sure someone will be very grateful that you're willing to donate. My husband is going to be having a stem-cell transplant in the next few months (assuming everything works out with a donor). We're very grateful that so many people have signed up and that there is someone who is an unrelated perfect match for him.

The procedure Sparkly Blonde mentioned is a bone marrow biopsy. My husband has had at least half a dozen, and as another poster said, they aren't particularly painful if the person doing them is skilled. Harvesting stem cells is a different procedure - more like kidney dialysis - and isn't painful.

Having someone I love be in need of a transplant makes me so grateful for everyone who has signed up for the registry. The more people who sign up, the more potential matches there are. It can be particularly important for those who are minorities or of mixed ethnicities because the donor pool is so much smaller that the chances of a match are also much smaller. Thank you, Megumic, for being willing to help save someone's life.

Yes, I was going to mention about minorities signing up, as well, as this tends to be less common!

 

[somethingshiny]

I've never donated. I've been on the list for 16 years. I think it's an awesome opportunity for you. I know that the donation process isn't exactly comfortable, but to have a hand in helping someone so greatly is just amazing. I'd be excited and nervous too. I'm glad to see the website linked. Everyone should sign up to Be the Match!

 

[AprilBaby]

Megumic, Thanks to you I went online to the site and registered to be a donor today!

 

[Attached]

Yes, my fiancée is a cancer survivor. We actually just found out a month ago that he is "cancer free" and a week ago that there is a very high probability that the cancer won't come back because he hasn't had chemotherapy for two years now. The type of cancer he has usually comes back after a year to two years of no chemotherapy. Again, thank you for being so generous and being a possible donor for someone.

 

[Autumnovember]

Thank you for posting this! I hope you are a definite match! I registered today

 

[Andelain]

I matched once. First I got word that I was a preliminary match, then I went in for a check and a sample for a confirming match. I was told I was a match and prepped for the procedure. I traveled to Atlanta and checked into the hospital and was ready for the next day when someone from the hospital administration came int eh room and told me I wasn't a match after all and I was free to go.

I knew she wasn't telling me the truth. The boy was nine and he had died that day.


Now I'm ineligible to ever donate again.

 

[April20]

I matched once. First I got word that I was a preliminary match, then I went in for a check and a sample for a confirming match. I was told I was a match and prepped for the procedure. I traveled to Atlanta and checked into the hospital and was ready for the next day when someone from the hospital administration came int eh room and told me I wasn't a match after all and I was free to go.

I knew she wasn't telling me the truth. The boy was nine and he had died that day.


Now I'm ineligible to ever donate again.

I am completely unknowledgeable on this subject. Why are you ineligible?

 

[Andelain]

I matched once. First I got word that I was a preliminary match, then I went in for a check and a sample for a confirming match. I was told I was a match and prepped for the procedure. I traveled to Atlanta and checked into the hospital and was ready for the next day when someone from the hospital administration came int eh room and told me I wasn't a match after all and I was free to go.

I knew she wasn't telling me the truth. The boy was nine and he had died that day.


Now I'm ineligible to ever donate again.

I am completely unknowledgeable on this subject. Why are you ineligible?

Because of an illness I had once. Even though I recovered completely the erroneous misconception is that I could carry the virus.

 

[Ninna]

Another late poster....
Megumic, Thanks for being souch a wonderful person, N.

 

[megumic]

Thanks again everyone for your support! More importantly, thanks to those who decided to sign up today to become donors! It is a very selfless act to simply put yourself on the list and I think it's truly miraculous that you could get a call at any moment that your healthy body is in need.

I still may end up not being a match, but I will know more within three weeks. I'll keep everyone posted! For those who are late to the thread, please consider joining the National Marrow Donor Program. It's free to join - http://www.marrow.org/JOIN/Join_Now/join_now.html.

 

[megumic]

Yes, my fiancée is a cancer survivor. We actually just found out a month ago that he is "cancer free" and a week ago that there is a very high probability that the cancer won't come back because he hasn't had chemotherapy for two years now. The type of cancer he has usually comes back after a year to two years of no chemotherapy. Again, thank you for being so generous and being a possible donor for someone.

That is incredible! My congrats to your fiancee -- I'm sure he is so grateful for his health and the future he'll have with you. Many wishes for a cancer-free future as well!

 

[megumic]

I matched once. First I got word that I was a preliminary match, then I went in for a check and a sample for a confirming match. I was told I was a match and prepped for the procedure. I traveled to Atlanta and checked into the hospital and was ready for the next day when someone from the hospital administration came int eh room and told me I wasn't a match after all and I was free to go.

I knew she wasn't telling me the truth. The boy was nine and he had died that day.


Now I'm ineligible to ever donate again.

Andelain, this is an inspiring story, despite the sad outcome. Wow, so crazy that you were a perfect match -- and even though all the cards were aligned for this boy to receive what he needed, God had some other plans. Incredible. I can imagine it was very emotional and distressing for you as well. I still think you're a hero even though you did not get to donate -- the fact that you had the opportunity and were so willing to do so is wherein lies the heroism. Thank you for sharing your story!

 

[Haven]

I think it is so wonderful that you're contemplating donating bone marrow.

My "second father" died of multiple myeloma in 2007. His brother donated bone marrow to him and it gave him a year of quality life. It was a painful procedure, but my uncle says it was obviously worth every second of pain.

I'm so touched that you're on the donor list, and I'm so sad bringing up this story, that I'm sitting here in tears. I hope you decide to do it if you're comfortable with what's involved.

 

[jstarfireb]

I haven't donated, but I'm on a registry (DKMS), and last year I got an email from them saying that I was a match for a young man with AML. However, at that point in time, I was on a medication that had drastically reduced my white blood cell count to the point that I was ineligible to donate. I contacted them after the course of the medication had finished and my WBC came back up to a safe level, but they never got back to me about it, so I'm not sure what happened. I hope they found another match for that patient.

They did mention that most stem cell donations are done by the peripheral collection method rather than by surgical donation (I think the split was 80/20). With the peripheral collection method, they give you shots of a medication called Neupogen to mobilize your stem cells and then hook you up to an apheresis machine, which is somewhat like blood donation. It's much less invasive than the surgical method, but the side effect of the Neupogen is bone pain. Which method is preferred depends on the patient and their doctors. If you do end up with the surgical method, it's usually done under general anesthesia.

 

[megumic]

Thanks again everyone for sharing your stories! I still haven't heard anything, but I did learn that only 8% of people who are contacted at this preliminary stage actually go on to donate. I sincerely hope I'm a match and can help the individual who is looking for a match!

 

[EricaR]

I tried to sign up and was disappointed I am not eligible to donate due to my use of steroids during asthma attacks. I'll keep on donating blood every 56 days though!

 

[Andelain]

Andelain, this is an inspiring story, despite the sad outcome. Wow, so crazy that you were a perfect match -- and even though all the cards were aligned for this boy to receive what he needed, God had some other plans. Incredible. I can imagine it was very emotional and distressing for you as well. I still think you're a hero even though you did not get to donate -- the fact that you had the opportunity and were so willing to do so is wherein lies the heroism. Thank you for sharing your story!

Thanks megumic, that's very kind of you to say. I never thought of myself as a hero or anything but someone who had a chance to help another person.

I don't think I'll ever forget that, although it was years ago. The lady that came in to tell me I could go tried to tell me I wasn't a match after all, but wouldn't look me in the eye. I pressed her for the truth and she was being evasive, so I finally leaned back against the propped up bad and told her I wasn't leaving until she told me what had happened. She finally said "The recipent died about an hour ago". I asked for a little info about the recipient and she said "He was nine". I just hung my head and started to cry a little for a boy I'd never meet while she wrote something on the chart on my bed.

She turned back to me and said "That's the reason we don't give out that information, to spare the donors the pain of knowing". I looked at her for a second and asked "Don't you think I would have figured it out? And don't you think I had the right to know and have feelings for someone I have a connection to? And don't you think that little boy has a right to have someone shed a tear in his memory?!?" I just couldn't imagine going about my life without even wanting to know what had happened.

 

[megumic]

Update: I was waiting for the train home and got a call from a strange number. Turned out it was a rep of Be The Match. She was calling to confirm my interest and willingness to donate - which I confirmed. AND she gave me info on the recipient. It's not much and the only info they can legally share, but it made it so freaking real I started to cry!!! The recipient is a 41 yo male with Hodgkins Lymphoma. I have so many questions! Is he married? Does he have kids? Where does he live? What does he do? Omg I just can't stop reeling.

What is even more incredible is that if we are matches, we may in fact be related. I have two family lines that were cut-off and this may solve some of the story. Of course this is all complete speculation and wishing, but in the event it worked out and the recipient wanted to meet, this might be the truths my mom has been looking for. My mom's mom was found on a door step and was raised by the couple who found her. My guess is one or both of her bio parents went on to have more children at some point and this other family of my mom's exists somewhere. It could also be my dad's side too - his bio dad split when he was born. It's a long shot, but I can't help but think this is somehow family related, considering the chances of being a match for blood relatives is much higher.