It's a needle in a Haystack, but will the needle hurt?
February 13, 2007 2:31 PM Subscribe
Over 3 years ago I registered with the National Bone Marrow Donor Program as part of a charity event. It was really simple - all they did was take a little blood... Today I get a phone call that apparently, I'm a match.
Is there anyone here that has some PERSONAL experience with everything involved? I've found some websites and searched the AskMe. This community has the tendency to be blatantly honest, so I'm looking for anyone that can give me an idea of what's really going to happen - not necessarily what I'm going to read from a 'testimonial' on a website.
I've already decided to go through with it, but I just want to know on a more personal level what I'm in store for. Bonus points given to anyone that can provide links to info that I may have missed in my initial Google-ing.
Is there anyone here that has some PERSONAL experience with everything involved? I've found some websites and searched the AskMe. This community has the tendency to be blatantly honest, so I'm looking for anyone that can give me an idea of what's really going to happen - not necessarily what I'm going to read from a 'testimonial' on a website.
I've already decided to go through with it, but I just want to know on a more personal level what I'm in store for. Bonus points given to anyone that can provide links to info that I may have missed in my initial Google-ing.
And please follow-up with how things went! Not only for our curiousity, but to provide info for futuer Googlers!
posted by ThePinkSuperhero at 2:49 PM on February 13, 2007 [1 favorite]
posted by ThePinkSuperhero at 2:49 PM on February 13, 2007 [1 favorite]
Best answer: My brother gave my sister bone marrow to help put her leukemia into remission. It was successful and a hero for doing it. I can tell you what he told me. It was painful but nothing he couldnt handle. He was 11 at the time so that was about 14 years ago and i am sure that the technology has come a long way. You are doing the right thing. The pain is bareable and the discomfort is something you can deal with but saving a life is amazing and you should feel like a hero for doing it.
posted by iphog at 2:49 PM on February 13, 2007
posted by iphog at 2:49 PM on February 13, 2007
I had a similar experience. What happened to me was that I went thinking they were going to take my bone marrow right there and then, and it turned out they were doing a second round of tests. I got a call a week later to say that I wasn't actually a match after all. It was kind of anticlimactic, especially since I'd managed to get myself really excited at the prospect of being a donor.
posted by craichead at 2:49 PM on February 13, 2007
posted by craichead at 2:49 PM on February 13, 2007
Best answer: The process itself isn't painful because they knock you out for it. Recovery is a bit painful, but I'd think you'd get over it in a few days. And of course it's in a very good cause.
They take the marrow from your pelvis and your femurs. To get it they have to push a pretty big needle through the big muscles on top of the bones, and then drill through the bone to reach the marrow inside. That has to be done several times in several different places in order for them to get enough. There's no way you'd want to be awake for it, if for no other reason than the risk of shock. (Also, I'm sure they have to use a paralytic agent, which means you have to be ventilated.)
The main recovery pain is going to be from the big muscles that have had holes poked in them.
(But IANAD. Ikkyu2? Am I full of it again?)
posted by Steven C. Den Beste at 3:02 PM on February 13, 2007
They take the marrow from your pelvis and your femurs. To get it they have to push a pretty big needle through the big muscles on top of the bones, and then drill through the bone to reach the marrow inside. That has to be done several times in several different places in order for them to get enough. There's no way you'd want to be awake for it, if for no other reason than the risk of shock. (Also, I'm sure they have to use a paralytic agent, which means you have to be ventilated.)
The main recovery pain is going to be from the big muscles that have had holes poked in them.
(But IANAD. Ikkyu2? Am I full of it again?)
posted by Steven C. Den Beste at 3:02 PM on February 13, 2007
Here's the straight word:
Marrow donation is a surgical procedure performed in a hospital. While the donor receives anesthesia, doctors use special, hollow needles to withdraw liquid marrow from the donor's pelvic bones. Many donors receive a transfusion of their own previously donated blood. A donor's marrow is completely replaced within four to six weeks.
Marrow donors can expect to feel some soreness in their lower back for a few days or longer. Donors also have reported feeling tired and having some difficulty walking. Most donors are back to their usual routine in a few days. Some may take two to three weeks before they feel completely recovered.posted by Steven C. Den Beste at 3:06 PM on February 13, 2007
First off, will it be a marrow donation, or a peripheral blood stem cell (PBSC) donation? My friend was told she was a marrow match but they ended up doing a PBSC donation.
PBSC is easier in that they don't knock you out - you just sit connected to a dialysis-like machine that harvests the stem cells in your blood. A full account of that process is here. Likely side effects include bone pain, fatigue, and headaches, with a full list of side effects here.
I don't know much about actual marrow donation, but PBSC was relatively easy for my friend, and she certainly felt great about making a difference.
posted by langeNU at 3:11 PM on February 13, 2007
PBSC is easier in that they don't knock you out - you just sit connected to a dialysis-like machine that harvests the stem cells in your blood. A full account of that process is here. Likely side effects include bone pain, fatigue, and headaches, with a full list of side effects here.
I don't know much about actual marrow donation, but PBSC was relatively easy for my friend, and she certainly felt great about making a difference.
posted by langeNU at 3:11 PM on February 13, 2007
I used to be in haematology.
PBSC donation - they'll probably inject you with granulocyte colony stimulation factor to mobilize your CD34+ haematopoietic stem cells. No (significant) long term harm done. I can't remember what the regimen was, you might have to go in a few days before the blood draw. The actual draw is tedious, but doesn't hurt as much as a bone marrow draw. There's accumulating evidence that mobilized PBSC isn't really a good idea (increased risk of graft-versus host disease in the patient).
Bone marrow aspiration - it'll hurt, but "you'll be on your feet by the end of the day." The femur (thigh bone) is big and has lots of marrow. You'll likely be stabbed with a big needle several times. If your recipient is a small child, you might not be stabbed as many times.
posted by porpoise at 3:16 PM on February 13, 2007
PBSC donation - they'll probably inject you with granulocyte colony stimulation factor to mobilize your CD34+ haematopoietic stem cells. No (significant) long term harm done. I can't remember what the regimen was, you might have to go in a few days before the blood draw. The actual draw is tedious, but doesn't hurt as much as a bone marrow draw. There's accumulating evidence that mobilized PBSC isn't really a good idea (increased risk of graft-versus host disease in the patient).
Bone marrow aspiration - it'll hurt, but "you'll be on your feet by the end of the day." The femur (thigh bone) is big and has lots of marrow. You'll likely be stabbed with a big needle several times. If your recipient is a small child, you might not be stabbed as many times.
posted by porpoise at 3:16 PM on February 13, 2007
Response by poster: langeNU - they discussed both procedures with me, but didn't really specify if it would be one or both. I'm a noob and didn't think to ask that - but I'll be sure to ask next time! They did say that I would need to come in for an overnight hospital stay with general anethesia, and that I would then have to do a five day treatment with the hormone injections (which I'm assuming is the PBSC that you mentioned).
The only other thing talked about - other than a ba-jillion health questions - was that it was for a one year old boy - I don't know if that has any bearing on the kind of procedure that would be done. Thanks for the info so far.
posted by matty at 3:21 PM on February 13, 2007
The only other thing talked about - other than a ba-jillion health questions - was that it was for a one year old boy - I don't know if that has any bearing on the kind of procedure that would be done. Thanks for the info so far.
posted by matty at 3:21 PM on February 13, 2007
Response by poster: porpoise, they said the drug would be a hormone called "filgrastim". Thanks again.
posted by matty at 3:24 PM on February 13, 2007
posted by matty at 3:24 PM on February 13, 2007
Please let us know how it goes. A one year old boy. You are awesome.
posted by alms at 3:29 PM on February 13, 2007
posted by alms at 3:29 PM on February 13, 2007
Echoing again: no personal experience, but you are very good people for doing this. Well done, sir. Well done indeed.
posted by dirtynumbangelboy at 3:49 PM on February 13, 2007
posted by dirtynumbangelboy at 3:49 PM on February 13, 2007
"Filgrastim" is the granulocyte colony stimulating factor (G-CSF, trade name Neupogen). Most people complain of bone pain after getting GCSF. There will probably be a lot of pain after the marrow harvest as well, but it does go away relatively quickly.
You would receive the Filgrastim regardless of whether you were donating PBSC or bone marrow. It sounds like you will be donating bone marrow, based on the anesthesia part they told you. There is no anesthesia with PBSC donation, since it's a lot like blood donation or donating blood platelets if you've ever done that.
I am really happy you are doing this. Kids have a remarkable way of bouncing back from these procedures, so I hope your recipient does well!
posted by sarahnade at 4:07 PM on February 13, 2007
You would receive the Filgrastim regardless of whether you were donating PBSC or bone marrow. It sounds like you will be donating bone marrow, based on the anesthesia part they told you. There is no anesthesia with PBSC donation, since it's a lot like blood donation or donating blood platelets if you've ever done that.
I am really happy you are doing this. Kids have a remarkable way of bouncing back from these procedures, so I hope your recipient does well!
posted by sarahnade at 4:07 PM on February 13, 2007
I didn't know you could register to donate. That's awesome... something for me to look into. I hope all goes well for you and the boy.
posted by youngergirl44 at 4:10 PM on February 13, 2007
posted by youngergirl44 at 4:10 PM on February 13, 2007
Just a note, you can sign up to be a bone marrow donor online.
posted by ThePinkSuperhero at 4:22 PM on February 13, 2007 [2 favorites]
posted by ThePinkSuperhero at 4:22 PM on February 13, 2007 [2 favorites]
Such a great thing to do matty, all the best of luck (and a special Valentine's ♥ !)
posted by ceri richard at 4:58 PM on February 13, 2007
posted by ceri richard at 4:58 PM on February 13, 2007
Best answer: In this donor registry there is a listing of stories in which the donor meets the recipient after a while. This one in particular seems to recount specific recovery details after donation. The stories there are awesome.
posted by jourman2 at 5:12 PM on February 13, 2007
posted by jourman2 at 5:12 PM on February 13, 2007
(and a special Valentine's ♥ !)
Yes, indeed. Seconded.
posted by ericb at 5:16 PM on February 13, 2007
Yes, indeed. Seconded.
posted by ericb at 5:16 PM on February 13, 2007
That's just....wonderful. When I read that you were going to be donating to a one-year-old, I got a little verklempt. Don't mind me.
posted by pinky at 7:27 PM on February 13, 2007
posted by pinky at 7:27 PM on February 13, 2007
Would any of you know how one goes about procuring a sponsorship code for the swab kit dealie? I want to get on the registry, but I don't have $36 (broke college student).
posted by tylermoody at 7:33 PM on February 13, 2007
posted by tylermoody at 7:33 PM on February 13, 2007
Best answer: Here's a little more info on PSBC harvesting.
Pre-collection testing and history (to exclude infectious diseases and retesting for ABO/HLA matching). Then GM-CSF for 5-6 days (bone pain, muscle aches, etc.). Then collection. PSBC is an apheresis collection. If you've ever donated apheresis platelets, it's just like that. One/two peripheral vein catheters (one if you're lucky) out to an apheresis machine which centrifuges your blood, seperating it into component materials, and returning back to you what they don't need (plasma, RBC's and platelets). You will be on the machine for several hours, but you get to watch movies. Bone marrow harvesting is a little more unpleasant. It's an OR procedure with conscious sedation (IV medication to make you loopy) without the need for general (so no tube down your throat). You get put face down and they harvest from your iliac crests (hard bones right above your buttocks).
I've been in the registry for about 5 years and haven't gotten called. I'd do it in a heartbeat though... instant karma to reverse all the evil thoughts that I have.
posted by i_am_a_Jedi at 7:35 PM on February 13, 2007
Pre-collection testing and history (to exclude infectious diseases and retesting for ABO/HLA matching). Then GM-CSF for 5-6 days (bone pain, muscle aches, etc.). Then collection. PSBC is an apheresis collection. If you've ever donated apheresis platelets, it's just like that. One/two peripheral vein catheters (one if you're lucky) out to an apheresis machine which centrifuges your blood, seperating it into component materials, and returning back to you what they don't need (plasma, RBC's and platelets). You will be on the machine for several hours, but you get to watch movies. Bone marrow harvesting is a little more unpleasant. It's an OR procedure with conscious sedation (IV medication to make you loopy) without the need for general (so no tube down your throat). You get put face down and they harvest from your iliac crests (hard bones right above your buttocks).
I've been in the registry for about 5 years and haven't gotten called. I'd do it in a heartbeat though... instant karma to reverse all the evil thoughts that I have.
posted by i_am_a_Jedi at 7:35 PM on February 13, 2007
Thanks, ThePinkSuperhero!
I had no idea you could sign up online, so I just did.
I've been meaning to do this for years but had never ran into an event where they were doing the testing.
posted by dweingart at 8:08 PM on February 13, 2007
I had no idea you could sign up online, so I just did.
I've been meaning to do this for years but had never ran into an event where they were doing the testing.
posted by dweingart at 8:08 PM on February 13, 2007
Bravo, matty, what a wonderful thing you are doing.
Since others are on topic, readers who are of mixed race/mixed heritage, please seriously consider registering in the bone marrow program. Your marrow could save the life of another person who, because of their mixed race/heritage, has a much smaller chance of finding a match.
Sorry for the derail. Best of luck and karma to you, matty.
posted by juliplease at 9:51 PM on February 13, 2007
Since others are on topic, readers who are of mixed race/mixed heritage, please seriously consider registering in the bone marrow program. Your marrow could save the life of another person who, because of their mixed race/heritage, has a much smaller chance of finding a match.
Sorry for the derail. Best of luck and karma to you, matty.
posted by juliplease at 9:51 PM on February 13, 2007
Cool, you get to save a someone's life. I have been a member for 15 years and have never been called. Maybe someday.
posted by caddis at 10:54 PM on February 13, 2007
posted by caddis at 10:54 PM on February 13, 2007
A friend is waiting for marrow; they told him there's a new procedure where they can sometimes take it from the ribs in the back. Please, register if you are mixed race. This guy could die looking for a matching Hawaiian donor. (Grandpa was stationed in Pearl Harbor during WW II.)
posted by unrepentanthippie at 5:18 AM on February 14, 2007
posted by unrepentanthippie at 5:18 AM on February 14, 2007
My mother did a peripheral blood stem cell (PBSC) donation for her sister. At first, she was told it would be a bone marrow transplant, but they ended up doing the blood stem cell procedure.
She said it took a few hours and was a bit uncomfortable (I think the worst part was she wasn't allowed to get up, so she tried using a bed pan at one point and didn't like that at all). Also, I believe she brought a movie to watch, and said the movie was pretty bad.
That's really minor stuff though -- overall, she says she felt it was an honour to be able to do it. After all, how often, when someone really needs help, are you able to actually offer it?
posted by Badmichelle at 8:17 AM on February 14, 2007
She said it took a few hours and was a bit uncomfortable (I think the worst part was she wasn't allowed to get up, so she tried using a bed pan at one point and didn't like that at all). Also, I believe she brought a movie to watch, and said the movie was pretty bad.
That's really minor stuff though -- overall, she says she felt it was an honour to be able to do it. After all, how often, when someone really needs help, are you able to actually offer it?
posted by Badmichelle at 8:17 AM on February 14, 2007
It's a beautiful thing.
posted by fluffycreature at 9:59 AM on February 14, 2007
posted by fluffycreature at 9:59 AM on February 14, 2007
Best answer: I'd probably been in the registry for 10 years when I got the call in May last year. They asked me if I would be willing to let them choose whether to to a bone marrow donation or a PBSC donation as part of a national study, and I said OK. They chose PBSC. (Whew!) Lots of blood testing and a full physical, then 4 or 5 days of twice-a-day injections of filgrastim. I felt kind of tired for those 4 or 5 days, but it was the end of the semester and it could have been that I was just looking for an excuse to be lazy for a bit and this was a good one. Maybe a bit of stiffness as well. They did two days of blood collection/filtering for about 2 hours per day. Not really all that uncomfortable, but too noisy to really enjoy the movies. I was back to work the next day, feeling fine.
I feel really good about having donated, and would do it again without hesitation.
posted by Killick at 10:05 AM on February 14, 2007
I feel really good about having donated, and would do it again without hesitation.
posted by Killick at 10:05 AM on February 14, 2007
Took some digging to find it, but the Canadian bone marrow registry is handled by Canadian Blood Services.
posted by hangashore at 10:14 AM on February 14, 2007
posted by hangashore at 10:14 AM on February 14, 2007
Best answer: I donated marrow through the Antony Nolan Trust about 12 years ago. I'm pretty sure things have changed considerably since then.
I had the marrow harvested from my thigh. There was no medical preparation other than that for a general anaesthetic. From a physical point of view, coming round from the general anaesthetic was the most uncomfortable part. I was bit stiff and a little sore for a couple days, but was up and about in comfort within hours.
If I recall, I was asked to provide 3 blood samples over several weeks (each test being more detailed and therefore expensive to do) before I was finally chosen as the donor. I'm surprised that you have been chosen as a donor without further tests. Obviously, things have changed in the last decade.
As well as the physical aspects of the procedure, I think it is important to consider and to prepare yourself for the emotional journey you are embarking on. For me this started in earnest a few days before the harvest. It dawned on me that my recipient would already be being prepared to receive my bone marrow. If the harvest didn’t go ahead for whatever reason, the impact on the recipient, her family and friends would be devastating. I started driving very carefully.
There's every chance you will feel emotionally attached to your recipient (after all they are probably more akin to you genetically than your closest relatives), even though you may never meet them or know anything more about them than you do now. You may never know if the procedure was successful or not. For the rest of your life, you may wonder if they are still alive.
The decision as to whether donor and recipient meet in person and if not how much information is passed between the two is a complex one and needs careful consideration on both parts. There will be counsellors at your donor organisation who will help you with this decision. Personally, I tried to take the view that donating marrow was no different to donating blood - I certainly don't lie awake at night wondering how the people who may have my blood pumping through them are doing. Try as I might to take that view, donating marrow is different. I decided to allow the recipient to take the lead as to whether or not she wanted to contact me. She never has, and I respect that decision. All I know is that she was a girl in her early teens in France (I'm in the UK). 12 months after the procedure I enquired through the Trust and was informed that she was alive at that time. That's all I know. And now, I don't think I'd have it any other way. She may be alive and well today, in which case, great. If things didn't turn out well, then I rest easy knowing I did what I could.
Coincidentally, some 6 or 7 years ago, a friend of mine received marrow via the Antony Nolan Trust, so I had the privilege of seeing things from the recipients side too. And was able to explain to a recipient how it feels to be a donor. Sadly, after several years of remission, she passed away some 3 years ago.
Matty, if I can be of any further assistance, please contact me at beadonor at googlemail dot com
For those of you reading this thread and considering registering with an agency, please do - it's the easiest way you'll ever find to save someone's life.
posted by hmca at 3:39 PM on February 14, 2007 [5 favorites]
I had the marrow harvested from my thigh. There was no medical preparation other than that for a general anaesthetic. From a physical point of view, coming round from the general anaesthetic was the most uncomfortable part. I was bit stiff and a little sore for a couple days, but was up and about in comfort within hours.
If I recall, I was asked to provide 3 blood samples over several weeks (each test being more detailed and therefore expensive to do) before I was finally chosen as the donor. I'm surprised that you have been chosen as a donor without further tests. Obviously, things have changed in the last decade.
As well as the physical aspects of the procedure, I think it is important to consider and to prepare yourself for the emotional journey you are embarking on. For me this started in earnest a few days before the harvest. It dawned on me that my recipient would already be being prepared to receive my bone marrow. If the harvest didn’t go ahead for whatever reason, the impact on the recipient, her family and friends would be devastating. I started driving very carefully.
There's every chance you will feel emotionally attached to your recipient (after all they are probably more akin to you genetically than your closest relatives), even though you may never meet them or know anything more about them than you do now. You may never know if the procedure was successful or not. For the rest of your life, you may wonder if they are still alive.
The decision as to whether donor and recipient meet in person and if not how much information is passed between the two is a complex one and needs careful consideration on both parts. There will be counsellors at your donor organisation who will help you with this decision. Personally, I tried to take the view that donating marrow was no different to donating blood - I certainly don't lie awake at night wondering how the people who may have my blood pumping through them are doing. Try as I might to take that view, donating marrow is different. I decided to allow the recipient to take the lead as to whether or not she wanted to contact me. She never has, and I respect that decision. All I know is that she was a girl in her early teens in France (I'm in the UK). 12 months after the procedure I enquired through the Trust and was informed that she was alive at that time. That's all I know. And now, I don't think I'd have it any other way. She may be alive and well today, in which case, great. If things didn't turn out well, then I rest easy knowing I did what I could.
Coincidentally, some 6 or 7 years ago, a friend of mine received marrow via the Antony Nolan Trust, so I had the privilege of seeing things from the recipients side too. And was able to explain to a recipient how it feels to be a donor. Sadly, after several years of remission, she passed away some 3 years ago.
Matty, if I can be of any further assistance, please contact me at beadonor at googlemail dot com
For those of you reading this thread and considering registering with an agency, please do - it's the easiest way you'll ever find to save someone's life.
posted by hmca at 3:39 PM on February 14, 2007 [5 favorites]
This thread is closed to new comments.
posted by jesourie at 2:45 PM on February 13, 2007 [1 favorite]