My Experience Donating Blood Stem Cells, or: Why You Should Join a Bone Marrow Registry

Silas Strawn3 Jan 2024 1:07 UTC

78 points

Opportunities to take action Effective giving Kidney donation Personal development Opinion Donation choice Community experiences Building effective altruism Community

Note: I’m not a doctor. Please don’t make decisions about your health based on an EA forum post before at least talking with a physician or other licensed healthcare practitioner.

TLDR: I donated blood stem cells in early 2021. Immediately prior, I had been identified as the best match for someone in need of a bone marrow transplant, likely with leukemia, lymphoma, or similar condition. Although the first attempt to collect my blood stem cells failed, my experience was overwhelmingly positive as well as fulfilling on a personal level. The foundation running the donation took pains to make it as convenient as possible—and free, other than my time. I recovered quickly and have had no long-term issues related to the donation^[1]. I would encourage everyone to at least do the cheek swab to join the registry if they are able. For those in the US, please visit this page to join the Be The Match registry. If you’re in the UK, please join the Anthony Nolan registry here (thank you to @Rasool and @gbraithwaite for providing this).

This post was prompted—very belatedly—by a comment from “demost_” on Scott Alexander’s post about his experience donating a kidney^[2]. The commenter was speculating about the differences between bone marrow donation and kidney donation^[3]. I’m typically a lurker, but I figured this is a case where I actually do have something to say^[4]. According to demost_, fewer than 1% of those on the bone marrow registry get matched, so my experience is relatively rare. I checked and couldn’t find any other forum posts about being a blood stem cell or bone marrow donor. I hope to shine a light on what the experience is like as a donor. I know EAs are supposed to be motivated by cold, hard facts and rationality and so this post may stick out since it’s recounting a personal experience^[5]. Nevertheless, given how close-to-home matters of health are, I figured this could be useful for those considering joining the registry or donating.

My Donation Experience

I joined the registry toward the end of my college years. I don’t recall the exact details, but I’ve pieced together the timeline from my email archives. Be The Match got my cheek swab sample in December 2019 and I officially joined the registry in January 2020. If you’re a university student (at least in America^[6]), there’s a good chance that at some point there will be a table in your commons or quad where volunteers will be offering cheek swabs to join the bone marrow donor registry. The whole process takes a few minutes and I’d encourage everyone to at least join the registry if they can.

Mid-December 2020, I was matched and started the donation process. For the sake of privacy, they don’t tell you anything about the recipient at that point beyond the vaguest possible demographic info. I think they told me the gender and an age range, but nothing besides. demost_ supposed that would-be donors should be more moved to donate bone marrow than kidneys since there’s a particular, identifiable person in need (and marrow is much more difficult to match, so you’re less replaceable as a donor). I can personally attest to this. Even though I didn’t know much about the recipient at all, I felt an extreme moral obligation to see the process through. I knew that my choice to donate could make a massive difference to this person. I imagined how I would feel if it were a friend or loved one in need or even myself. The minor inconveniences of donating felt doubly minor next to the weight of someone’s life.

As a college student, I had a fluid schedule. I was also fortunate that my distributed systems professor was happy to let me defer an exam scheduled for the donation date. To their credit, Be The Match offered not only to compensate any costs associated with the donation, but also to replace any wages missed on account of the donation. I didn’t need to take them up on the latter offer, so I can’t elaborate on it. Overall, I found the Be The Match staff I worked with to be very caring and professional. I greatly admire the work they do and appreciate their support in my particular case. The same applies for the staff and professionals at the South Texas Blood & Tissue Center and the John Theurer Cancer Center at Hackensack Meridian.

Preliminary Steps

I’ll be honest, this was happening mid-pandemic, so my memory of all the logistical minutiae is a bit hazy. If you’re curious about something I gloss over, I can reach out to one of the folks at Be The Match and ask. I recall that I had a few phone calls with a nurse to inform me about the process and to go over my medical history. They sent me to a clinic near my apartment a couple of times to get a physical, get a urine sample, and have my blood drawn to confirm that I was indeed the best match available. (Edit: in discussing this with a colleague, I remembered that I passed out during the blood draw. I think this was just because the clinic staff had my sitting upright at the time.) All of this was paid for ahead of time by Be The Match.

Work-Up & Donation Attempt ¹⁄₂

The procedure they wanted me to undergo is called a peripheral blood stem cell (PBSC) donation. As I understand it (again, not a medical professional), it’s a safer and easier alternative to bone marrow donation. During bone marrow donation, they put you under general anesthesia and collect bone marrow from the back of your pelvis via surgery, whereas during a PBSC donation, they just draw your blood over several hours^[7], while a machine filters out the stem cells and returns the rest of the blood to your body.

In the five days leading up to the donation, you’ll need daily injections of filgrastim to increase the amount of stem cells in your blood. I recall the nurse telling me the most common side effect^[8] of this is body aches of the kind you get when you have the flu. They once described it to me as “your bones hurting.” Thankfully this was pretty mild for me. I just felt kind of crappy, but not terrible. I was taking over-the-counter painkillers the whole time, though.

On the day of my donation (late Feb. 2021), they directed me to the South Texas Blood & Tissue Center in San Antonio, Texas, about an hour’s drive from my university in Austin^[9]. I showed up bright and early, excited to finish the process and get on with my last semester. Unfortunately, the donation didn’t go according to plan.

The staff kept trying to get a good blood vessel in my arm, but none quite seemed to work well enough. I was a bit confused about this, since I had donated whole blood several times before without issue. As far as I could tell, the staff were all professionals and there was simply something technical about my anatomy that made it difficult. I could try and recall what they told me, but again, I’m not a medical professional and so I wouldn’t trust myself to recount it accurately. My understanding is that what happened to me was atypical.

I was told that, unfortunately, the donation couldn’t happen that day, but they could still collect blood stem cells using an alternate procedure. The backup plan was to put a central line into one of the major blood vessels at the top of my leg, near my crotch. It would be more invasive: they would need a doctor to perform the procedure in a proper hospital (as opposed to a donation clinic) and it would involve a local anesthetic. They explained that it was slightly higher risk, but I wanted to see the donation through.

Donation Attempt ²⁄₂

At this point, Be The Match was scrambling to find a hospital that would be able to take me as soon as possible. I had completed workup, the aforementioned five daily injections, so they couldn’t just reschedule the donation a week or a month later. They ended up finding an opening at a hospital in Hackensack, New Jersey. I flew out that evening from San Antonio around 6 pm and landed in Newark about five hours later.

Here’s where I really got to see the Be The Match / South Texas Blood staff shine. They had an employee with me the whole time, making sure I was doing okay. They paid for and booked flights, taxis, a hotel, meals, etc. They even offered to have me take a member of my family with me. I really appreciate all the care they took to make sure I felt comfortable, despite the last minute change of plans. The staff I worked with were all kind and supportive. I have absolutely no notes for them^[10].

I arrived at the hospital the next morning, on February 26 2021. The procedure was to take place at the John Theurer Cancer Center at Hackensack Meridian hospital. After paperwork and another physical, it was time for the doctor to place the central line in my leg. It felt strange going in: the area was anesthetized, so there was no pain, but I did feel some pressure as though someone was poking me hard on my thigh. From there, everything went smoothly. I just had to sit and wait around for a few hours while the machine worked its magic. It was surreal watching the bag fill up with my blood stem cells. For some reason, I distinctly remember it being salmon-colored.

And that was pretty much it. I stayed at the hospital all day, but went to bed in the hotel and remained in New Jersey for a couple of days. I had to be careful not to reopen the incision in my leg. It eventually^[11] healed and I was back to my normal self. The nurse phoned me periodically to check in on my recovery until about 2 months later (I was back to normal well before then, IIRC). Thankfully, I’ve had no long term side effects from the medication or the donation procedure. According to Be The Match, the median recovery time for PBSC donation is 7 days^[12].

Closing Thoughts

If you take anything away from this post, please let it be that you should join the bone marrow donor registry and encourage others to do the same. It takes a matter of minutes and could make a world of difference to someone. According to Be The Match, only 29-79% of patients are able to find a match among the paltry 41 million people on worldwide registries^[13]. More folks are needed, clearly. If you’re in the US, please go to this linkto join the registry. Be The Match will send you a swab kit in the mail for free once you sign up. Those in the UK can join a registry here.

Even though my experience was less smooth than expected, I’m very happy I went through it. Getting to be a PBSC donor was a profound experience for me and I hope I made a difference to my recipient.

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Your mileage may vary depending on your situation, of course. At the time I donated, I was a relatively healthy 22 year old cis male in college. I was fairly sedentary but at a healthy weight for my height. As an aside, I’ve become much less sedentary since I moved from Texas to the American Pacific Northwest. I wish someone had told me how easy it is to be active if you live in the right place for you.
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Scott Alexander’s blog post is fantastic. If you haven’t already read it, I would encourage you to, especially if you’re curious about kidney donation. Here’s Scott’s blog post and the comment that prompted my post.
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For kidney donation to a stranger, it’s initiated by the would-be donor, whereas bone marrow donation starts with the donor candidate being matched to a particular person in need.
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Accordingly, this is my first post on the forum. I’ve tried to abide by the forum rules and norms. My apologies if I unknowingly violated any. I’m happy to make edits as needed.
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You could always donate to GiveWell and donate bone marrow / blood stem cells. For me personally, donating sums to GiveWell doesn’t feel like a particularly salient sacrifice. It’s useful to also have opportunities for costly signals to myself that say “actually I do really care about being authentically altruistic”. Although to be clear, donating blood stem cells is a far less costly signal than kidney donation. I also think PBSC donation stacks up favorably against GiveWell in terms of cost per QALY gained from the donor perspective, but I’m not terribly confident in my math (I can share if there’s interest). Or maybe just follow common sense morality here and if there’s a person that you and only you can save, then just do it. PBSC donation is less of a stretch from the Singerian “child drowning in a shallow pond next to you” thought experiment than donating to fund malaria bed nets, in my humble opinion.
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Sorry for this post being a bit America-centric. I know not everyone on the internet is American. I’m recounting my experience, though, and I do happen to be American.
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Be the Match says it’s up to 8 hours. I would just expect to be there all day on the day of donation.
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FYI there are other potential side effects as well. IIRC, they are much rarer. Talk to a doctor about it if you’re concerned or want more info.
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Presumably, they will try to send you to a donation facility close to you. If you’re being considered for donation and are worried about it, I would just ask the foundation running the donation. They most likely can arrange or compensate you for travel.
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I’m very effusive in my praise here, so I feel the need to mention that I have no affiliation with Be The Match or any other group mentioned in this post besides my PBSC donation in early 2021.
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Regrettably, I don’t recall the actual timeline for this. Presumably, a physician would know.
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Stats on average donation recovery time are from Be The Match here.
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The odds of a patient being matched are dependent on their demographics, hence the wide spread. The matching and registry size stats are from Be The Match here.