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Started By
Message
Any OTers here ever donated bone marrow? I got the call yesterday.
Posted on 4/17/20 at 8:17 pm
Posted on 4/17/20 at 8:17 pm
About five years back, there was a local girl around 10 years old that was in need of a bone marrow transplant. One of my friends asked me to join the Be The Match registry. I ended up not being a match. Every now and then, I get the email asking to confirm that I want to remain on the registry. Other than that, I never think about it.
Yesterday I get a call from an unknown Houston number. I usually let these calls go to voicemail, but for some reason I answered. The person introduced themself and said they were from Be The Match and said that I’m a potential match for someone with a blood disease. This person had exhausted all options of testing relatives for a match, so they went to the registry.
To say that I’m excited to be able to donate is an understatement.
It especially hit me in the feels when they shared this video with me to post to my Facebook: LINK
I searched and saw a few posts about the registry from earlier this year.
Has anyone donated bone marrow for a transplant? There’s two options to donate. One is where they put you under and extract it from your pelvic bone. The other is by getting a shot that increases bone marrow production, causing it to flow into your blood stream where they extract in a manner similar to dialysis. There’s pros and cons to each.
Also, please consider joining the registry: LINK You could possibly save a life.
Yesterday I get a call from an unknown Houston number. I usually let these calls go to voicemail, but for some reason I answered. The person introduced themself and said they were from Be The Match and said that I’m a potential match for someone with a blood disease. This person had exhausted all options of testing relatives for a match, so they went to the registry.
To say that I’m excited to be able to donate is an understatement.
It especially hit me in the feels when they shared this video with me to post to my Facebook: LINK
I searched and saw a few posts about the registry from earlier this year.
Has anyone donated bone marrow for a transplant? There’s two options to donate. One is where they put you under and extract it from your pelvic bone. The other is by getting a shot that increases bone marrow production, causing it to flow into your blood stream where they extract in a manner similar to dialysis. There’s pros and cons to each.
Also, please consider joining the registry: LINK You could possibly save a life.
Posted on 4/17/20 at 8:21 pm to liuyaming
WAY to go. It won't be pleasant, but you may save a life.
Posted on 4/17/20 at 8:21 pm to jimbeam
I've been on the list for 20+ years. Once, about 15 years ago I got called in to do additional typing and I wasn't a match. I'll still do it if needed.
Posted on 4/17/20 at 8:22 pm to liuyaming
I’ve never done it, but God bless you for volunteering. I might look into doing it as well.
Posted on 4/17/20 at 8:24 pm to liuyaming
Not yet, I am signed up for it though.
Posted on 4/17/20 at 8:26 pm to liuyaming
You are what's good in this world. Good for you man
Posted on 4/17/20 at 8:27 pm to liuyaming
I’ve heard it’s very painful
Posted on 4/17/20 at 8:28 pm to liuyaming
September 2018 I donated stem cells through Be the Match
What do you want to know?
What do you want to know?
This post was edited on 4/17/20 at 8:34 pm
Posted on 4/17/20 at 8:28 pm to liuyaming
Good man. I thing I would go for being put under.
Posted on 4/17/20 at 8:29 pm to liuyaming
You are amazing. Thank you for doing this!
Posted on 4/17/20 at 8:31 pm to liuyaming
Good for you. As someone who has participated in bone marrow harvests if you have a choice go for peripheral blood stem cells. Regardless you may be saving a life and that is awesome! Thanks for promoting a great cause and for being selfless for someone who is clinging to a match as a potential life saving procedure.
Posted on 4/17/20 at 8:32 pm to liuyaming
I signed up last year when one of my best friends needed it. Of course I didnt match with him but will stay on the registry. I saw what he and his family went through and dont wish that pain and suffering on anyone.
Props to you for helping. Takes a real man to do that
Props to you for helping. Takes a real man to do that
Posted on 4/17/20 at 8:42 pm to LSUJML
Thanks for the support everyone. When she asked if I would still consider Donating, I told her 100% yes. I would gladly sacrifice temporary pain to try to help save a life. I’m adopted, so any chance that I can pay forward the opportunity my parents gave me, I will.
Was mainly wondering about experience with the procedure options, or anything else I should consider. I’m leaning toward going under and the pelvic bone extraction. The shot seems like it would be a longer time commitment with faster recovery, but there is the potential for some side effects while it’s increasing bone marrow production.
quote:
LSUJML
Was mainly wondering about experience with the procedure options, or anything else I should consider. I’m leaning toward going under and the pelvic bone extraction. The shot seems like it would be a longer time commitment with faster recovery, but there is the potential for some side effects while it’s increasing bone marrow production.
Posted on 4/17/20 at 8:50 pm to liuyaming
FYI. They only want you if you are 18 - 44. So if older don’t bother. They will charge you $100 to register. Frick that.
Posted on 4/17/20 at 8:51 pm to liuyaming
I have done it, for my brother. I did the shot deal, had to give myself like 4 shots a day of “nuepagin” to build up and get in bloodstream. Thats the easy part for me as i didnt mind it. Chose to give myself shots in the thigh and abdomen mostly each day.
When u go in for harvest, it is really no different than donating blood or plasma except you are in the chair 6-8 hrs and you get really cold.
They will run every test known to man to make sure you are healthy before you start those shots.
Would do again in a heartbeat
When u go in for harvest, it is really no different than donating blood or plasma except you are in the chair 6-8 hrs and you get really cold.
They will run every test known to man to make sure you are healthy before you start those shots.
Would do again in a heartbeat
Posted on 4/17/20 at 8:54 pm to liuyaming
Peripheral stem cell collection will involve shots of G-CSF (zarxio or neupogen) with catheter placement for pheresis. Minimal risk overall. Bone pain from stimulating the marrow to produce cells with the subq shots.
Marrow harvest is recurrent bone marrow aspirations that will result in pelvic pain and soreness for a few days.
Peripheral stem cells lead to faster engraftment (taking in) by the recipient.
Most centers prefer peripheral stem cell transplants but will take what they can get.
Marrow harvest is recurrent bone marrow aspirations that will result in pelvic pain and soreness for a few days.
Peripheral stem cells lead to faster engraftment (taking in) by the recipient.
Most centers prefer peripheral stem cell transplants but will take what they can get.
Posted on 4/17/20 at 8:55 pm to liuyaming
My husband's sister lived a couple extra decades because of a donated kidney and another friend had a transplant a few years ago. From this side donors are awesome!!! We are organ donors but didn't think to sign up for marrow donation (if you have to be under 44 we are too old now).
Posted on 4/17/20 at 9:05 pm to liuyaming
I’m pretty sure you don’t make the decision as to the type of procedure.
I got the call & was asked if I wanted to move forward, said yes so they set me up with LabCorp to test my blood
A few weeks later they said it was a match & asked if I wanted to proceed
Flew me to Houston & gave me Uber codes, met with donation center & had full physical, blood work, EKG & chest x ray
Few weeks later they said I passed & asked if I wanted to move forward
Once they schedule the date they send neupogen shots, you have to go to Dr. for first dose to make sure there is no reaction, they have to fill out form & turn it in
A family member us a nurse so she submitted paperwork to do the rest of the shots
They send packs with disposable thermometers, gloves, bs David’s, everything needed for the daily shots
She had to fill out paperwork & I scanned & sent it in daily
The shots are done in the week leading up to the procedure, the last shot is done before the procedure
The day before the procedure they flew me & my mom to Houston & got us hotel rooms
They also ask you to take a specific gummy calcium vitamin & to bring them to procedure
The shots they give you....they cause bone pain
As it builds up in your system, maybe day 3 or 4, I started getting uncomfortable sitting for long periods of time
If I moved a certain way it was like muscle spasms up & down my spine
Those brought tears to my eyes
Donation staff commented on how I wasn’t in constant pain, said most people have a lot more skin than I did
I did stem cells, hook up one arm to pull it out, you cannot move this arm at all during procedure
I sat in reclining chair with arm stretched out
Other arm hooked up with blood coming back in, can move it all you want
They had a tv, I had my iPad..my mom actually left to meet up with a friend she went to high school with
Only thing is you can’t go pee so while they say hydrate you do t wa t to do that morning of
They somewhat gush all over you, call you a hero, it was uncomfortable
What made it real was once I was done they make you wait a half hour just to make sure you’re ok & while I was in the waiting room she passed with the little igloo I’ve chest like on tv
The shots are supposed to boost the amount of cells, it really worked for me, I was in & out in 4 hours
Went back to hotel to rest then me & my mom went out to dinner, flew home next day
They offered to reimburse me for meals & vitamins, it was such a small amount it wasn’t worth it, they were thankful & considered it a donation
Last September I was told my patient was still alive, they don’t give much info on the patient but I did receive a card from her after 6 months
I feel like I jumped around, let me know if you want me to clarify something
I think it’s 5 days of shots, I donated on a Monday
Sat I was uncomfortable, Sun was the worst by Wednesday I was back 100%
I got the call & was asked if I wanted to move forward, said yes so they set me up with LabCorp to test my blood
A few weeks later they said it was a match & asked if I wanted to proceed
Flew me to Houston & gave me Uber codes, met with donation center & had full physical, blood work, EKG & chest x ray
Few weeks later they said I passed & asked if I wanted to move forward
Once they schedule the date they send neupogen shots, you have to go to Dr. for first dose to make sure there is no reaction, they have to fill out form & turn it in
A family member us a nurse so she submitted paperwork to do the rest of the shots
They send packs with disposable thermometers, gloves, bs David’s, everything needed for the daily shots
She had to fill out paperwork & I scanned & sent it in daily
The shots are done in the week leading up to the procedure, the last shot is done before the procedure
The day before the procedure they flew me & my mom to Houston & got us hotel rooms
They also ask you to take a specific gummy calcium vitamin & to bring them to procedure
The shots they give you....they cause bone pain
As it builds up in your system, maybe day 3 or 4, I started getting uncomfortable sitting for long periods of time
If I moved a certain way it was like muscle spasms up & down my spine
Those brought tears to my eyes
Donation staff commented on how I wasn’t in constant pain, said most people have a lot more skin than I did
I did stem cells, hook up one arm to pull it out, you cannot move this arm at all during procedure
I sat in reclining chair with arm stretched out
Other arm hooked up with blood coming back in, can move it all you want
They had a tv, I had my iPad..my mom actually left to meet up with a friend she went to high school with
Only thing is you can’t go pee so while they say hydrate you do t wa t to do that morning of
They somewhat gush all over you, call you a hero, it was uncomfortable
What made it real was once I was done they make you wait a half hour just to make sure you’re ok & while I was in the waiting room she passed with the little igloo I’ve chest like on tv
The shots are supposed to boost the amount of cells, it really worked for me, I was in & out in 4 hours
Went back to hotel to rest then me & my mom went out to dinner, flew home next day
They offered to reimburse me for meals & vitamins, it was such a small amount it wasn’t worth it, they were thankful & considered it a donation
Last September I was told my patient was still alive, they don’t give much info on the patient but I did receive a card from her after 6 months
I feel like I jumped around, let me know if you want me to clarify something
I think it’s 5 days of shots, I donated on a Monday
Sat I was uncomfortable, Sun was the worst by Wednesday I was back 100%
This post was edited on 4/17/20 at 9:07 pm
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