Bone marrow / PBSC donation experiences
March 16, 2021 2:01 PM Subscribe
I’ve found out that I’ve matched with someone through Be the Match, they’ve provided good resources for me, but I’d love to hear any of your experiences before I fully commit.
I do not yet know whether the patient needs a PBSC or bone marrow donation.
I’m assuming both are well-established established procedures, and are fairly safe... right? How did the process go for you?
Also curious to hear your experience with recovery. I am on my bike quite a bit. Recovery times are estimated three weeks for marrow donation, and more like a week for PBSC. Is this around how long it took for you to feel back to normal during rigorous exercise? Were you able to return to your sport / exercise sooner at a reduced capacity?
Lastly, I’m wondering about the likelihood I’ll have to travel for this. I live in the Bay Area and I’m assuming there will likely be a facility nearby that will be able to do either procedure. Is this right to assume?
Thanks!
I do not yet know whether the patient needs a PBSC or bone marrow donation.
I’m assuming both are well-established established procedures, and are fairly safe... right? How did the process go for you?
Also curious to hear your experience with recovery. I am on my bike quite a bit. Recovery times are estimated three weeks for marrow donation, and more like a week for PBSC. Is this around how long it took for you to feel back to normal during rigorous exercise? Were you able to return to your sport / exercise sooner at a reduced capacity?
Lastly, I’m wondering about the likelihood I’ll have to travel for this. I live in the Bay Area and I’m assuming there will likely be a facility nearby that will be able to do either procedure. Is this right to assume?
Thanks!
I also lack a personal story, but I looked at this when joining Be The Match, and turns out there are a lot of studies of donors' experiences. Here's one that's open access from 2008 (full text link should be at the upper right on PubMed). Searching similar articles or articles that cite that one might get you more recent reports.
posted by deludingmyself at 2:28 PM on March 16, 2021 [1 favorite]
posted by deludingmyself at 2:28 PM on March 16, 2021 [1 favorite]
I asked this question a long time ago, but the responses may still be somewhat helpful.
posted by bookmammal at 4:08 PM on March 16, 2021 [1 favorite]
posted by bookmammal at 4:08 PM on March 16, 2021 [1 favorite]
Best answer: I donated a really long time ago, maybe 2005ish? I was also matched through a different organization, Gift of Life. So my experience may not be quite as relevant to you.
Some things I remember: time was of the essence. They didn't pressure me, but made it clear that it was really important that if I was going to commit, the sooner the better. I was pretty broke at the time and they also offered to pay for rides to and from any appointments I had. Even though I later found out that the recipient was in another country, I only had to travel to a hospital local to me. (In Boston. We do have world-class medical facilities.) It was an outpatient procedure. There were a few beds I think but the only people around that day were medical staff. They hooked me up to some machines, let me pick a movie to watch, and treated me like a rock star. It was a bit uncomfortable but mostly because I had picked "Kissing Jessica Stein" and watching sex scenes in front of the nurses was awkward. I'm one of those people that doesn't mind blood draws, though.
The whole procedure took a few hours. I think I felt fine soon after but I really don't remember. I'm not sporty at all so working out after was not a concern for me. I have never regretted the experience!
posted by prewar lemonade at 4:11 PM on March 16, 2021 [3 favorites]
Some things I remember: time was of the essence. They didn't pressure me, but made it clear that it was really important that if I was going to commit, the sooner the better. I was pretty broke at the time and they also offered to pay for rides to and from any appointments I had. Even though I later found out that the recipient was in another country, I only had to travel to a hospital local to me. (In Boston. We do have world-class medical facilities.) It was an outpatient procedure. There were a few beds I think but the only people around that day were medical staff. They hooked me up to some machines, let me pick a movie to watch, and treated me like a rock star. It was a bit uncomfortable but mostly because I had picked "Kissing Jessica Stein" and watching sex scenes in front of the nurses was awkward. I'm one of those people that doesn't mind blood draws, though.
The whole procedure took a few hours. I think I felt fine soon after but I really don't remember. I'm not sporty at all so working out after was not a concern for me. I have never regretted the experience!
posted by prewar lemonade at 4:11 PM on March 16, 2021 [3 favorites]
Best answer: Hi! I donated PBSC through Be The Match in 2018. If you like social media, ask your coordinator about the donor Facebook group. I didn't find out about it until after my donation, but a lot of people join at your stage and ask questions throughout the process. Your coordinator from BtM will hold your hand through the whole process and make sure everything runs smoothly. I would be surprised if you had to leave the Bay Area to donate. I did mine locally, in Madison, WI. If you do have to travel, BtM will cover the costs of that and help with logistics.
You're right that both procedures are very well-established and safe for the donor. If you are ultimately chosen as the best match, you will have lengthy phone calls with your coordinator where they go over any potential risks in great deal and give you tons of time to ask questions. The process was really smooth for me. I have a needle phobia, so I was nervous about getting the filgrastim shots, and even more nervous about the apheresis. I was especially concerned that I would faint (strong vasovagal response here) and they wouldn't be able to finish the procedure. They gave me an Ativan before putting in the IV and I was totally fine (after some deep breathing in the bathroom!)
The main side effect for me was bone pain for ~3 days before the procedure, which was pretty miserable. I had a very young child at the time and I was glad that I took the days off work and that my mom came to help out around the house. If I'd had to work, I would have survived, but would have felt miserable. People have different degrees of response to the filgrastim and some people feel only mild pain or a headache. My recovery was very easy. I felt better almost immediately after the donation. I don't remember whether I exercised the next day, but I don't remember intentionally taking any days off. I definitely went to work the next day.
Overall, I would 100% donate again and encourage others to do so as well. My mom received PBSCs from a stranger in 2019 (total coincidence. she probably already had the cancer when she came to help me through my donation) and is thriving today only because of that person's selflessness. PBSC donation is truly one of the easiest things you can do to transform someone's life, and the lives of those around them. I think of my mom's donor almost every day.
posted by juliapangolin at 5:40 PM on March 16, 2021 [4 favorites]
You're right that both procedures are very well-established and safe for the donor. If you are ultimately chosen as the best match, you will have lengthy phone calls with your coordinator where they go over any potential risks in great deal and give you tons of time to ask questions. The process was really smooth for me. I have a needle phobia, so I was nervous about getting the filgrastim shots, and even more nervous about the apheresis. I was especially concerned that I would faint (strong vasovagal response here) and they wouldn't be able to finish the procedure. They gave me an Ativan before putting in the IV and I was totally fine (after some deep breathing in the bathroom!)
The main side effect for me was bone pain for ~3 days before the procedure, which was pretty miserable. I had a very young child at the time and I was glad that I took the days off work and that my mom came to help out around the house. If I'd had to work, I would have survived, but would have felt miserable. People have different degrees of response to the filgrastim and some people feel only mild pain or a headache. My recovery was very easy. I felt better almost immediately after the donation. I don't remember whether I exercised the next day, but I don't remember intentionally taking any days off. I definitely went to work the next day.
Overall, I would 100% donate again and encourage others to do so as well. My mom received PBSCs from a stranger in 2019 (total coincidence. she probably already had the cancer when she came to help me through my donation) and is thriving today only because of that person's selflessness. PBSC donation is truly one of the easiest things you can do to transform someone's life, and the lives of those around them. I think of my mom's donor almost every day.
posted by juliapangolin at 5:40 PM on March 16, 2021 [4 favorites]
Best answer: Here's my previous comment about donating bone marrow.
Pain was minimal at the incision sites at my pelvis. I took a full week off work and chilled and played video games and congratulated myself. The blow to my endurance training was significant (I tried to resume training way too early). I'd do it again. Feel free to PM me if you have further questions (or just ask here if you want).
posted by spikeleemajortomdickandharryconnickjrmints at 7:03 PM on March 16, 2021 [1 favorite]
Pain was minimal at the incision sites at my pelvis. I took a full week off work and chilled and played video games and congratulated myself. The blow to my endurance training was significant (I tried to resume training way too early). I'd do it again. Feel free to PM me if you have further questions (or just ask here if you want).
posted by spikeleemajortomdickandharryconnickjrmints at 7:03 PM on March 16, 2021 [1 favorite]
Response by poster: Thank you all for your responses! I truly appreciate it, both the personal accounts and the resources. This was what I needed to confidently commit!
posted by blueberrypuffin at 9:54 AM on March 17, 2021 [3 favorites]
posted by blueberrypuffin at 9:54 AM on March 17, 2021 [3 favorites]
I just did this in September for an anonymous recipient and recommend the donor FB group. It’s the loveliest spot on the Internet.
posted by melodykramer at 10:32 PM on March 17, 2021
posted by melodykramer at 10:32 PM on March 17, 2021
I donated locally through a central line. Recovery was minimal - maybe 3 days to feel myself completely. It was one of the best experiences I’ve had in my life.
posted by melodykramer at 10:34 PM on March 17, 2021
posted by melodykramer at 10:34 PM on March 17, 2021
This thread is closed to new comments.
posted by praemunire at 2:25 PM on March 16, 2021 [2 favorites]