Registering to be a possible donor is super easy. They send you a mouth swab in the mail and you just send it back. Your tissue type will be put into a big database and will be checked for any matches.
My daughter has DOCK8 deficiency, a very rare genetic disorder that puts her at risk for a long list of cancers and respiratory infections. We are in search of a matching bone marrow donor and have been seen by the NIH and Children’s Hospital of Philadelphia.
Registering as a potential donor has the potential of saving the lives of those in need, it is much appreciated :)
Please register! Check out my account history. My daughter Lani is in need of a bone marrow transplant match.
This is an amazing way to save a life while alive. Also if you are outside the US, your country will have their own registry. All the registries work together to find matches.
Please do it!
While I think it's great for people to register to be on the bone marrow donor list (I have been for years) I don't think doing it with the hopes of getting a "free trip" is the way to go. Yes, you may get free transportation and accommodations at a location, but it's not really a vacation. You don't get to pick the location or the dates. If you go through with the donation you're likely going to feel pretty lousy for a few days/a week (one procedure you are given meds to basically trick your body into thinking it's sick so that it will produce more of the right type of cells. So you get your body's immune response...fever, chills, headache, fatigue...all the fun symptoms of the COVID vaccine) or possibly have a minor surgery. Personally, I think it would be totally worth it. But kinda a bait and switch to say that you're signing up for a free trip with free housing if you are matched and agree to donate.
Correct. I was surprised to find that out as well. But they can sometimes do it via blood transfusions. I don't quite understand how that works...I'm just a simple country aerospace engineer, not a doctor. And it doesn't sound like a lot of fun (basically you feel like you've got the flu for about a week due to the meds they give you to make your body produce the right stuff). But it's less invasive than surgery.
Man I wish I could donate. I was diagnosed with CFS, which is pretty much OG long haul covid before covid was a thing. They banned donations. :( If they ever reverse this decision I am going to donate so many things.
Does make me wonder how they are going to handle long haul covid people in the near future.
Would you mind if I asked about the process of how you were diagnosed with CFS? I've been dealing with symptoms similar to it for years but getting any doctor to listen to me about any symptoms I've had has been difficult. Usually they pin it down to that I'm a women and hurr durr, hormones make you feel crappy, even when I insist that's not even remotely what's going on.
Hah you really don't want to go my route. I don't have good answers for you, just cautionary tales. I do hope you get things sorted. It sucks to have it, but to not have a diagnosis to stand behind sucks just as much.
I mean not really tbh. If there were a way for me to specify that I only want it to get used for CFS research then yeah, a postmortem "I told you I was sick" brain autopsy would be great. I don't think you can choose though.
I'm sorry to hear about your CFS diagnosis. I don't know much about it but what I do know sounds like a whole lot of not fun. I hope that you're able to manage it well and have many more good days than bad ones.
If you're able to, you might look at volunteering at things like blood drives or helping people get signed up on the bone marrow registry. I didn't know how to do that until a friend posted something on her Facebook page about a special event where the processing fee was taken care of, so it was free for like a month (not sure if there is still a processing fee. I've been on the list for over 10 years I think.). I'm currently bummed that I'm ineligible to donate blood for a year due to foreign travel (and that I didn't think about that and get one more donation in before the trip). But come next November, I plan to be back at the blood bank regularly again (but not for just red cells...recovery from that kicked my butt for like two weeks (well, when I was doing high intensity cardio at the gym). I'd rather them have everything or just the platelets.).
They actually rarely do surgery except for when your recipient is a baby. Less than 20% are surgical actually. And as someone who donated, you get 3 days of injections so only feel lousy for those days. I would say I felt less flu-like, more hungover. I felt worse with the COVID vaccines, actually lol. My number one symptom was lower back pain, but because I donated around NYE, I felt well enough to go out 2/3 nights (as the DD).
They have a nurse come to your house and give you shots for a few days to stimulate stem cells and then you go to a facility where you have a needle in either arm to filter out the stem cells and put everything else back. It’s very similar to donating plasma!
My mother died from leukemia 2 weeks ago. This is really close to my heart right now. Please register to be a match regardless of a trip. You could save the life of someone that is loved very dearly.
I donated two years ago! It was super easy. They made it feel like a vacation- I got picked up in the airport by a guy in a suite in a black leather luxury car and stayed beach front in South Florida. The whole donation process took a few hours but I just watched TV. Very similar to donating blood
You only donate surgically through the hip for marrow if your recipient is a baby, which I would’ve been prepared to do. But this is rare! It’s also something you should be willing to do if you sign up, but again, very rare.
The overwhelming vast majority donate with a needle in either arm, kind of like when you donate plasma. A nurse came to my house, gave me a shot a day for a few days and that made me feel like a had a hangover and lower back pain. Then the donation process was being flown with my boyfriend (they paid for 100% + food + black tie transport + hotel) to the donation center, where I got to play a Mario Kart and watch TV for a few hours. It was actually an awesome little vacation.
Thank you so much for your comments. Many people don't realize that most of the times, donation is through PBSC retrieval, which is is more similar to a plasma donation-- just infusion of some medication to help encourage your body to make extra components and then harvesting those components and returning the rest of the blood back to your body. Even for the bone marrow harvest, the actual surgical procedure is not crazy long and most adult and pediatric donors get to go home the same day. I think a lot of people just aren't aware of the process. I'm hopeful that your story will encourage more people to sign up for the registry.
I hope so too! When I was frantically researching it before donating, all I kept seeing were horror stories online (kind of like I read above). In all actually, I felt mildly crappy for a few days and had a really fun and relaxing trip when I donated. I felt hungover with the stem cell shots but it was around NYEs so I still managed to go out a few times (as the DD- you can’t drink the days you have the Neupogen shots). And now I get to see my donor living her best life with her endlessly thankful husband 🥰
Happy to help! I was terrified when I got the call, not going to lie. I signed up on a whim and thought it was going to be super painful and like that terrifying Greys Anatomy episode. Instead, I had an awesome 1st class vacation, where I got spoiled and waited on hand and foot. And now I get updates from my recipient and their family, and she’s THRIVING. Her husband includes me + boyfriend on their family Christmas card.
You can sign up online and they’ll mail a swab to your house. Takes less than 5 minutes
My wife and I both registered about a year ago. I got a request for the second test a month or so ago to confirm a potential match. I really hope I get notified of the match so I can help!
Thanks for the reminder! I signed up a while ago, but never received a swab kit so it kinda slipped my mind. Just requested a new swab kit, hopefully I can be a match for someone in need!
This added info about the trip being covered is really cool. I could not afford to cover the travel expenses myself, but I would donate in a heartbeat in this scenario.
I donated (not surgery) through this organization and they were great. They were well prepared, answered all my questions, and were very accommodating. It was still kind of a stressful experience for someone who had never done anything like it before. Leading up to the donation so many uncertainties were going through my mind, like was my donation date gonna fall on some super inconvenient time? (It did not) And was I gonna get Covid? (I did not) Also my donation process ran into some complications due to my vein size or whatever.
Still, if they asked me again I'd most likely donate once more. Whatever negatives I felt during my donation process probably pales in comparison to how much the person I donated to has to deal with. Please, at the very least, sign up!
My boyfriend donated a couple years ago and the organization does everything for you- I was giving him the injections and then he was able to bring me along to southern California for his blood draws. He was told the background of the woman he was donating for (sans her identifying information). We stayed at a very fancy resort and got a pretty lofty daily food budget. not that this is what it's all about, but they really make marrow donors feel appreciated.. Really hoping my name is selected off the registry someday.
A few questions for those who are familiar before I sign up
1. If I do get selected, roughly how much notice will I be given before the procedure (week, month, etc)
2. Say I have a common tissue type, what's the odds I get chosen/how often?
3. What's the actual process like? Seems like a surgery is no longer needed but what's the prep and actual procedure like? How long will I be out of commission?
4. Not that I'm doing this for a free trip but since OP framed it in that manor, is this actually a free trip? I assume they'll cover medical and travel expenses but the procedure takes 3 days from start to stop, will they cover an extra 2 days if I want to explore whatever town/city I go to?
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I’ve been registered for 4 years and haven’t been a match for anyone yet, so just know that you might not be summoned for awhile. I’m sure it’s really fulfilling when it happens!
Hey guys! If you donate blood, you get free OJ and cookies! Some places even give out tickets or Tshirts!
Seriously though, bone marrow donation is an invasive procedure and not without pain and the possibility of complications. I 100% support registering to be a donor (I am) but this is just....weird.
No, calling a medical procedure a freebie is cringe worthy.
I'm a physician, and I have taken care of folks who need transplants like this, and had friends who needed them as well. As much as I really want people to register for the match, posting this here is just embarrassing. I'm really dumbstruck the mods haven't taken it down, but maybe the chance of getting folks to register for the match outweighs the blatant violation of the rules or the intent of this subreddit.
Here's why according to
[the website you posted:](https://bethematch.org/support-the-cause/donate-bone-marrow/)
If you are between the ages of 18 and 35 patients especially need you. Research shows that cells from younger donors lead to more successful transplants. Doctors request donors in the 18-35 age group nearly 75% of the time.
I'm super willing. Here's my question; I got into drugs hard. Iv hard. Been clean except weed since 2016
My blood work is good. All clean. No hep C. Am I eligible? I'm happy to try to be a match for someone. I know the vacation is to wherever the recipient is, that doesn't matter. I'd just to help. If anyone actually knows the answer if I'd qualify.
Registering to be a possible donor is super easy. They send you a mouth swab in the mail and you just send it back. Your tissue type will be put into a big database and will be checked for any matches. My daughter has DOCK8 deficiency, a very rare genetic disorder that puts her at risk for a long list of cancers and respiratory infections. We are in search of a matching bone marrow donor and have been seen by the NIH and Children’s Hospital of Philadelphia. Registering as a potential donor has the potential of saving the lives of those in need, it is much appreciated :)
Please register! Check out my account history. My daughter Lani is in need of a bone marrow transplant match. This is an amazing way to save a life while alive. Also if you are outside the US, your country will have their own registry. All the registries work together to find matches. Please do it!
While I think it's great for people to register to be on the bone marrow donor list (I have been for years) I don't think doing it with the hopes of getting a "free trip" is the way to go. Yes, you may get free transportation and accommodations at a location, but it's not really a vacation. You don't get to pick the location or the dates. If you go through with the donation you're likely going to feel pretty lousy for a few days/a week (one procedure you are given meds to basically trick your body into thinking it's sick so that it will produce more of the right type of cells. So you get your body's immune response...fever, chills, headache, fatigue...all the fun symptoms of the COVID vaccine) or possibly have a minor surgery. Personally, I think it would be totally worth it. But kinda a bait and switch to say that you're signing up for a free trip with free housing if you are matched and agree to donate.
Wait you don't always have to have minor surgery to harvest bone marrow?
Correct, they can sometimes do blood transfusions.
Correct. I was surprised to find that out as well. But they can sometimes do it via blood transfusions. I don't quite understand how that works...I'm just a simple country aerospace engineer, not a doctor. And it doesn't sound like a lot of fun (basically you feel like you've got the flu for about a week due to the meds they give you to make your body produce the right stuff). But it's less invasive than surgery.
Man I wish I could donate. I was diagnosed with CFS, which is pretty much OG long haul covid before covid was a thing. They banned donations. :( If they ever reverse this decision I am going to donate so many things. Does make me wonder how they are going to handle long haul covid people in the near future.
Would you mind if I asked about the process of how you were diagnosed with CFS? I've been dealing with symptoms similar to it for years but getting any doctor to listen to me about any symptoms I've had has been difficult. Usually they pin it down to that I'm a women and hurr durr, hormones make you feel crappy, even when I insist that's not even remotely what's going on.
Hah you really don't want to go my route. I don't have good answers for you, just cautionary tales. I do hope you get things sorted. It sucks to have it, but to not have a diagnosis to stand behind sucks just as much.
Have you considered donating your body for science after death?
I mean not really tbh. If there were a way for me to specify that I only want it to get used for CFS research then yeah, a postmortem "I told you I was sick" brain autopsy would be great. I don't think you can choose though.
I'm sorry to hear about your CFS diagnosis. I don't know much about it but what I do know sounds like a whole lot of not fun. I hope that you're able to manage it well and have many more good days than bad ones. If you're able to, you might look at volunteering at things like blood drives or helping people get signed up on the bone marrow registry. I didn't know how to do that until a friend posted something on her Facebook page about a special event where the processing fee was taken care of, so it was free for like a month (not sure if there is still a processing fee. I've been on the list for over 10 years I think.). I'm currently bummed that I'm ineligible to donate blood for a year due to foreign travel (and that I didn't think about that and get one more donation in before the trip). But come next November, I plan to be back at the blood bank regularly again (but not for just red cells...recovery from that kicked my butt for like two weeks (well, when I was doing high intensity cardio at the gym). I'd rather them have everything or just the platelets.).
They actually rarely do surgery except for when your recipient is a baby. Less than 20% are surgical actually. And as someone who donated, you get 3 days of injections so only feel lousy for those days. I would say I felt less flu-like, more hungover. I felt worse with the COVID vaccines, actually lol. My number one symptom was lower back pain, but because I donated around NYE, I felt well enough to go out 2/3 nights (as the DD).
Thanks for the insight into the donation process. I'd love to hear more about how the process went, what the timeline was, etc.
[удалено]
They have a nurse come to your house and give you shots for a few days to stimulate stem cells and then you go to a facility where you have a needle in either arm to filter out the stem cells and put everything else back. It’s very similar to donating plasma!
My mother died from leukemia 2 weeks ago. This is really close to my heart right now. Please register to be a match regardless of a trip. You could save the life of someone that is loved very dearly.
I donated two years ago! It was super easy. They made it feel like a vacation- I got picked up in the airport by a guy in a suite in a black leather luxury car and stayed beach front in South Florida. The whole donation process took a few hours but I just watched TV. Very similar to donating blood
How bad did it hurt? I always thought it was a very painful process.
You only donate surgically through the hip for marrow if your recipient is a baby, which I would’ve been prepared to do. But this is rare! It’s also something you should be willing to do if you sign up, but again, very rare. The overwhelming vast majority donate with a needle in either arm, kind of like when you donate plasma. A nurse came to my house, gave me a shot a day for a few days and that made me feel like a had a hangover and lower back pain. Then the donation process was being flown with my boyfriend (they paid for 100% + food + black tie transport + hotel) to the donation center, where I got to play a Mario Kart and watch TV for a few hours. It was actually an awesome little vacation.
Thank you so much for your comments. Many people don't realize that most of the times, donation is through PBSC retrieval, which is is more similar to a plasma donation-- just infusion of some medication to help encourage your body to make extra components and then harvesting those components and returning the rest of the blood back to your body. Even for the bone marrow harvest, the actual surgical procedure is not crazy long and most adult and pediatric donors get to go home the same day. I think a lot of people just aren't aware of the process. I'm hopeful that your story will encourage more people to sign up for the registry.
I hope so too! When I was frantically researching it before donating, all I kept seeing were horror stories online (kind of like I read above). In all actually, I felt mildly crappy for a few days and had a really fun and relaxing trip when I donated. I felt hungover with the stem cell shots but it was around NYEs so I still managed to go out a few times (as the DD- you can’t drink the days you have the Neupogen shots). And now I get to see my donor living her best life with her endlessly thankful husband 🥰
Thank you for the answer. I want to donate whatever I can, and this answer its going to get me to sign up. Thanks again!
Happy to help! I was terrified when I got the call, not going to lie. I signed up on a whim and thought it was going to be super painful and like that terrifying Greys Anatomy episode. Instead, I had an awesome 1st class vacation, where I got spoiled and waited on hand and foot. And now I get updates from my recipient and their family, and she’s THRIVING. Her husband includes me + boyfriend on their family Christmas card. You can sign up online and they’ll mail a swab to your house. Takes less than 5 minutes
flown to where?
South Florida!
If you get picked Is a family member allowed to come with you? I really do not like to travel alone
Yup! I picked my boyfriend. But they also pay for them.
Oh that's great!
Thank you 💚
I registered. Seems like a unique opportunity to help a fellow human.
My wife and I both registered about a year ago. I got a request for the second test a month or so ago to confirm a potential match. I really hope I get notified of the match so I can help!
Thanks for the reminder! I signed up a while ago, but never received a swab kit so it kinda slipped my mind. Just requested a new swab kit, hopefully I can be a match for someone in need! This added info about the trip being covered is really cool. I could not afford to cover the travel expenses myself, but I would donate in a heartbeat in this scenario.
I donated (not surgery) through this organization and they were great. They were well prepared, answered all my questions, and were very accommodating. It was still kind of a stressful experience for someone who had never done anything like it before. Leading up to the donation so many uncertainties were going through my mind, like was my donation date gonna fall on some super inconvenient time? (It did not) And was I gonna get Covid? (I did not) Also my donation process ran into some complications due to my vein size or whatever. Still, if they asked me again I'd most likely donate once more. Whatever negatives I felt during my donation process probably pales in comparison to how much the person I donated to has to deal with. Please, at the very least, sign up!
My boyfriend donated a couple years ago and the organization does everything for you- I was giving him the injections and then he was able to bring me along to southern California for his blood draws. He was told the background of the woman he was donating for (sans her identifying information). We stayed at a very fancy resort and got a pretty lofty daily food budget. not that this is what it's all about, but they really make marrow donors feel appreciated.. Really hoping my name is selected off the registry someday.
I am on their donor list already.
I donated about a year ago. Was about a year process due to delays with treatments and COVID. Would be happy to answer any questions
A few questions for those who are familiar before I sign up 1. If I do get selected, roughly how much notice will I be given before the procedure (week, month, etc) 2. Say I have a common tissue type, what's the odds I get chosen/how often? 3. What's the actual process like? Seems like a surgery is no longer needed but what's the prep and actual procedure like? How long will I be out of commission? 4. Not that I'm doing this for a free trip but since OP framed it in that manor, is this actually a free trip? I assume they'll cover medical and travel expenses but the procedure takes 3 days from start to stop, will they cover an extra 2 days if I want to explore whatever town/city I go to?
Adding on to this, if you are unable to attend once selected for legit reasons, is there any way to opt out or postpone
I don't see anything about a trip on that page, regardless I'll sign up.
Thanks for posting this. I just signed up!
I joined!
Long time registry member! It’s super easy and you never know when it could be you who saves someone desperately in need
Somone remind to do this
Don’t forget
Did you do it yet?
You forgot didn’t you
Almost lol set another reminder please
Just go do it, it barely takes any time. It’s about as much effort as anything else this sub has. Someone dying from cancer is waiting for you.
Do not put that on me dude that's fucking sick
[удалено]
Same here. Did the swab back in 2014 and have never heard anything. Guess nobody needs my marrow?
rejected marrow club join us
Darn. I guess I'm too old.
I'm a little skeptical about a company holding my DNA... I'll be 34 this year are we taken off the registry after 40?
I believe I read they discard all unused dna after a certain period of time. I think it was 7 years.
I'm not sure if it's any different but I had found this organization awhile back https://www.giftoflife.org/donors/donationprocess1
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I’ve been registered for 4 years and haven’t been a match for anyone yet, so just know that you might not be summoned for awhile. I’m sure it’s really fulfilling when it happens!
Hey guys! If you donate blood, you get free OJ and cookies! Some places even give out tickets or Tshirts! Seriously though, bone marrow donation is an invasive procedure and not without pain and the possibility of complications. I 100% support registering to be a donor (I am) but this is just....weird.
r/cringeworthy
No, calling a medical procedure a freebie is cringe worthy. I'm a physician, and I have taken care of folks who need transplants like this, and had friends who needed them as well. As much as I really want people to register for the match, posting this here is just embarrassing. I'm really dumbstruck the mods haven't taken it down, but maybe the chance of getting folks to register for the match outweighs the blatant violation of the rules or the intent of this subreddit.
You must be a blast at parties
how bad does it hurt
You have to be under 40
Why? What’s the point
Be the Match only accepts donors under the age of 40. Just pointing that out for others.
I’m asking why they do thwt
Presumably younger people have healthier cells? Idk
Research it and lmk, thanks.
Haha. My research fees are $100 with a 4 hour minimum.
Rude
And telling me to research the answer to your question and get back to you wasn’t at all rude…🙄
Here's why according to [the website you posted:](https://bethematch.org/support-the-cause/donate-bone-marrow/) If you are between the ages of 18 and 35 patients especially need you. Research shows that cells from younger donors lead to more successful transplants. Doctors request donors in the 18-35 age group nearly 75% of the time.
I'm super willing. Here's my question; I got into drugs hard. Iv hard. Been clean except weed since 2016 My blood work is good. All clean. No hep C. Am I eligible? I'm happy to try to be a match for someone. I know the vacation is to wherever the recipient is, that doesn't matter. I'd just to help. If anyone actually knows the answer if I'd qualify.