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      05-09-2017, 12:31 PM   #1
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Anyone ever donate bone marrow?

Was just notified I'm a best match to donate via Peripheral Blood Stem Cell donation. I have a phone information session tomorrow to discuss details, but wondering if anyone here has done it or knows much about it? They are aiming for later this month.
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      05-09-2017, 12:33 PM   #2
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It will suck for you a day or two (I've been told), but you will save a life for it. Go for it, make the bp people proud!.
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      05-09-2017, 08:10 PM   #3
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Following based on experience in my family:

The doner's blood is drawn, run through a machine that will separate stem cells in their blood, and then the rest of the blood is pumped back into the donor. In my experience, the separated stem cell solution is (appropriately) golden in color. Those stem cells are given to the recipient via an IV. The donor's stem cells then take root in the recipient's bone marrow, allowing them to produce their own blood.

Thank you for considering being a donor. My mother survived leukemia as a result of a stem cell transplant to give her functional bone marrow.

Gyro
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      05-10-2017, 12:58 AM   #4
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Originally Posted by GyroF-16 View Post
Following based on experience in my family:

The doner's blood is drawn, run through a machine that will separate stem cells in their blood, and then the rest of the blood is pumped back into the donor. In my experience, the separated stem cell solution is (appropriately) golden in color. Those stem cells are given to the recipient via an IV. The donor's stem cells then take root in the recipient's bone marrow, allowing them to produce their own blood.

Thank you for considering being a donor. My mother survived leukemia as a result of a stem cell transplant to give her functional bone marrow.

Gyro
I'm glad to hear your mother beat leukemia. The process sounds like when you donate plasma. I guess I'll find out more this evening.

I'm excited to do this, I've been on the registry for over ten years. I was on standby as a backup donor last year, but the primary worked out. I just hope I can work out the scheduling as I am overseas.
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      05-11-2017, 04:19 AM   #5
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Had the info session yesterday evening with my case worker, talked about an hour or so. The only info I have on the patient is that they are female and she has myelodysplastic syndrome, where the bone marrow doesn't produce enough red/white blood cells and/or platelets.

Also, found out the closest donor center is in Cologne, Germany, so I won't be going back and forth to the States like I originally thought. I'll go once for a health assessment, blood tests, screening, etc., and then back again for the actual donation. While this simplifies the logistics, still the biggest question right now is the timing. They want me to donate the first week of June, but that is the worst week for me in the near future timing-wise. She is asking the center if we can work a mid/late-June donation date, so fingers crossed!

The process itself is rather interesting - I'd be donating through the Peripheral Blood Stem Cell transfusion method. They will inject me daily with filgrastim for five days, which increases the levels of blood stem cells in the circulating blood. After the fifth injection, they'll extract the stem cells through atheresis, similar to when donating plasma, where they draw blood from one arm, extract the cells through a machine, and return everything else back through another arm. The process takes 4-6 hours.

Anyways, just thought I'd share!
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      05-11-2017, 04:33 AM   #6
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Bless you.
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      05-11-2017, 07:49 AM   #7
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What are the repercussions on your end for going through with this?
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      05-11-2017, 08:14 AM   #8
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What are the repercussions on your end for going through with this?
Mostly typical minor side effects from the drug injections that can get progressively worse as I keep getting them... headaches, bone aches, fatigue, nausea, etc. Although a specific one is possible enlargement of the spleen, so they recommend avoiding heavy lifting and contact sports for a week or two after donating.

They do cover me up to $250K for any procedure-related injuries/illness, and also a $1M payout to a beneficiary if I die. My wife was thrilled to hear that.

On the brighter side, they pay for transportation, food, and lodging to spend a week in Germany. On days 1-4, after getting the injections first thing in the morning, I'm pretty much free to do some sightseeing as long as the meds don't stop me. They'll pay for a companion to come out with me, but I'm thinking about just going solo.
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      05-11-2017, 08:33 AM   #9
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Quote:
Originally Posted by stooker View Post
Mostly typical minor side effects from the drug injections that can get progressively worse as I keep getting them... headaches, bone aches, fatigue, nausea, etc. Although a specific one is possible enlargement of the spleen, so they recommend avoiding heavy lifting and contact sports for a week or two after donating.

They do cover me up to $250K for any procedure-related injuries/illness, and also a $1M payout to a beneficiary if I die. My wife was thrilled to hear that.

On the brighter side, they pay for transportation, food, and lodging to spend a week in Germany. On days 1-4, after getting the injections first thing in the morning, I'm pretty much free to do some sightseeing as long as the meds don't stop me. They'll pay for a companion to come out with me, but I'm thinking about just going solo.
Aside from possibility of spleen enlargement the benefits this patient will get far exceed any side effects. This is not easy for the donor so I must say I take my hat off to you sir and good luck with everything.
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      05-11-2017, 09:00 AM   #10
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Aside from possibility of spleen enlargement the benefits this patient will get far exceed any side effects. This is not easy for the donor so I must say I take my hat off to you sir and good luck with everything.
Thanks! I'm definitely not concerned one bit about the side effects. It's a small price to pay to possibly save a life. I'm also one of the weirdos that loves watching while I get shots, blood drawn, etc., so I'm fascinated by this whole thing to say the least.
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      05-11-2017, 09:24 AM   #11
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Awesome mate, hat off to ya. You rock!!
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      05-11-2017, 10:36 AM   #12
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Awesome!!!
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      05-11-2017, 10:40 AM   #13
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Good for you undertaking this! It's a wonderfully selfless thing that is relatively easy for donors compared with what it can do for recipients.

Warning: Long post ahead. For the tl;dr crowd: It's awesome, simple procedure, bring something better than Stargate, and you'll (hopefully) weep with joy when it's successful.

I donated about 4 or 5 years ago and helped save the life of a lovely woman with lymphoma. I've met her and her family and my wife and I have visited and stayed with them. Being a desk jockey and not a soldier, police officer, firefighter, etc., saving her life is and probably will forever be one of the proudest things I've done in my miserable time on this rock ball.

As the docs have probably already explained, donation is a fairly easy process these days. From what I understand, it used to be the spinal tap under local anesthesia (to make sure the needle wasn't paralyzing you and that you could still wiggle your toes ) but the modern method is pretty simple. Now they just administer drugs to hyper-stimulate stem cell growth in your bones to the point where it leaches into your bloodstream. Then they hook you up to a centrifuge that spins the blood into its red, white, and stem cell components, recombine the red and white and send it back to you while "harvesting" the stem cells. I did kind of get creeped out by the "harvesting" language; hopefully someone in marketing can change that for them. The whole thing seemed very similar to dialysis treatment, if you know anything about that. As I recall, this procedure takes a several hours over a couple of days.

Bring something to binge watch since you'll be stuck in a hospital bed for a bit of time. I elected for the entire Stargate series. You can do better.

For side effects, the drugs they administered caused some mild headaches and achy joints. From what I was told, that's because your bones are filling up with so much stem cells that they become denser and heavier than what your body is used to. For me, that kicked in on the third day of drugs. It probably didn't help that I'm a big, athletic guy so they said they were going to hit me with the maximum dosage to "harvest" (again, that word) as much as they could.

I should point out that at the time I did it, the drugs were quasi-experimental. From what I recall, they hadn't yet completed long-term (25 years out) testing and something like 3/100,000 had died from complications, but otherwise it wasn't showing any problems.

(The only other weird "side effect" was a random survey call I received after the procedure. They asked a few fairly benign questions about whether donating stem cells, like if I or anyone in my family had received them before, then came the oddball, "Since you've donated stem cells to a complete stranger, would you donate a kidney to a complete stranger?" Right after I replied "No," they thanked me for my time and hung up. Yeah, that was a little disconcerting.)

So once the procedure's done, you'll have to wait a year to meet your recipient. Part of that is because sometimes the donation doesn't make a difference and the recipient still dies, and they don't want the donor to get hung up on that. In my case, my recipient was still touch and go for a number of months before my stem cells kicked in. Apparently, like me, they're a little slow to get started but then kick ass once they fire up. After the first year, they will share contact info but only if all parties consent. From what I understand, a small minority of recipients don't want to meet their donors, so you should be ready for that.

In my case, my recipient reached out to me on day 366 she was so grateful and eager to meet LOL. When we did finally meet, there wasn't a dry eye in the house. Believe me, you may think you're a tough guy who eats rocks for breakfast, but when you see what you've made possible and someone and their family reaches out to you weeping with gratitude, well...even now I get a little teary-eyed remembering it.

Hope that helps OP! Again, this is a wonderful thing you're doing and something to be proud of in the years to come. If you're anything like me, it will earn you back some much-needed major karma points.

If anyone else has read this far, please, please, please join the marrow registry, particularly if you're an ethnic minority, even more particularly if you have an Asian background. Evidently there are a lot of hangups about this kind of procedure in the Asian and Asian American communities, so the registry is woefully short on matches since they depend on DNA.
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      05-11-2017, 10:50 AM   #14
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Quote:
Originally Posted by Rygel XXV View Post
For the tl;dr crowd: It's awesome, simple procedure, bring something better than Stargate, and you'll (hopefully) weep with joy when it's successful.
AWESOME! Thanks so much for posting. It's great to hear from someone who's done this before. Your experience is exactly what they are asking me to do, down to waiting a year to find out the recipient. I am definitely pushing for this and all-in. I talked with my supervisor and he is supportive and understands it could be a life/death situation. Thanks again for posting and sharing your experience, and above all, thanks for donating. So cool to hear firsthand!
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      05-11-2017, 11:29 AM   #15
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Having a younger brother who went thru a similar situation, using Neupogen (filgrastim) to stimulate his own marrow production during chemo, the achy joints is from the marrow cells working, not from added density.
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      05-15-2017, 03:46 AM   #16
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No huge updates over the weekend. Signed a boatload of paperwork and release forms last week following the phone call. Big thing now is waiting to hear if the donation dates that the case worker and I discussed are a go for the recipient. If so, I'll be going in for the health screening and tests middle of next week and then back again to donate in mid-June. Fingers crossed!

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Having a younger brother who went thru a similar situation, using Neupogen (filgrastim) to stimulate his own marrow production during chemo, the achy joints is from the marrow cells working, not from added density.
It's an interesting process and amazing what modern medicine can accomplish. Is your brother in the clear now?
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      05-15-2017, 10:27 AM   #17
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^ That was 20+ years ago. I had tried to get my dad to buy some AmGen stock about a year before he had to pay over $100/shot for my brother to take Neupogen.

That brother is the only one of us 4 who today still has hair on his head
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      05-17-2017, 02:55 AM   #18
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So far, everything is a go. I go in for my physical exam on the 30th, and the start injections on the 15th. Suddenly I'm feeling nervous. Or maybe it's just excitement?
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      05-17-2017, 03:54 PM   #19
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Will you get to meet with the recipient after all are well?
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      05-17-2017, 04:42 PM   #20
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Will you get to meet with the recipient after all are well?
Everything is anonymous for a full year. Then if both sides agree, we can find out who the other is and go from there. Personally, I'm on the fence whether I'd want to meet the recipient.
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      05-18-2017, 11:56 AM   #21
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for the tl;dr crowd:
Quote:
Originally Posted by Rygel XXV View Post
....
If anyone else has read this far, please, please, please join the marrow registry, particularly if you're an ethnic minority, even more particularly if you have an Asian background. Evidently there are a lot of hangups about this kind of procedure in the Asian and Asian American communities, so the registry is woefully short on matches since they depend on DNA.
Great thing you are doing, and like Rygel says, they need donors. It is also REALLY REALLY hard to match people with mixed ethnic backgrounds, so the more varied or unique your background is, the more likely it is that you are a rare match for somebody who is otherwise SOL. Too bad that they are so busy giving the 1% another tax break - I'd like to see a massive deduction for anybody who is even on the registry, let alone willing to donate (and more money for education and recruitment).
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      05-20-2017, 10:35 AM   #22
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I donated bone marrow last June. Can't really offer any advice because I was asked to do the other donation method (two giant needles to hip bone). Definitely worth it, no matter how painful it is. Good luck.

I live in Austin, TX and had to drive to Houston twice for testing and procedure, and they compensated me more than enough in travel costs. I didn't receive any compensation for lost wages (don't remember if they offered it, but I know I didn't ask for it). Just in case you were wondering.
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