Thoughts One Year After Donating Bone Marrow Stem Cells

Last November 16th, I donated hematopoetic stem cells (the stem cells that form bone marrow–adult stem cells) to a man with MDS whose best chance of surviving was a stem cell transplant. I can’t believe it’s been a whole year now. Last I heard from the program, he was still alive. Now that it’s been a year, I have a chance of learning his name, maybe even meeting him!

Back in college, the National Marrow Donor Program did a drive on campus. I have to admit, I was not in a healthy frame of mind when I signed up. I’d found out that my mother was going to die. I was depressed. I wasn’t still suicidal at that point, but I was extremely sad. Bone marrow transplants weren’t what could save her, but I signed up thinking that death was so horrible and maybe I could save someone. It’s actually not a bad way of looking at it—we can’t always save the ones we love, but sometimes we can help other people. (It’s even easier to sign up now…they just need a cheek swab and can even send you a kit in the mail.)

I didn’t think about it much, kept the card in my jewelry box and eventually forgot entirely about it. Fast-forward to Summer of 2009. Out of the blue, I get a phone call saying that I might be the match for someone. Am I still interested? Will I give more blood to confirm? Do I have questions? Can I fill out a bunch of forms?

I took a few days to think about it, read about it online to make sure I knew what everything entailed and decided to go ahead.

After months of back-and-forth and some blood tests to confirm that I was a really truly perfect match (they said something about 20 points of comparison), we scheduled the donation.

The Donation Prep

Donating bone marrow stem cells (PBSC) is a bit different from donating regular bone marrow. Instead of pulling marrow out of a bone, they take the stem cells that create marrow right out of your blood. It gets run through an apheresis machine and the stem cells are collected while the rest gets put back in.

In order to donate, you need far far more bone marrow stem cells in your blood than the average person has. Before donating, you need a series of injections of a drug called Filgrastim (brand name Neupogen) which kicks your body into overdrive producing the stem cells. They don’t inject it straight into the blood but put it in where it’ll trickle in slowly over the day. Unfortunately, your body’s not meant to be producing this many stem cells and other things and therefore it’s quite painful in areas with a lot of bone. I had a lot of pain in my arms, legs, and shoulder blades. It wasn’t more than I could bear without meds, but it was too much for me to be able to go to work the day after the first shot.

I got injections over the 4 days before the day of donation. Because I live in DC and Georgetown University Hospital is part of the donor program, I was able to do it all here. For people who don’t live near a donation hospital, arrangements vary. The NMDP will fund travel, food, and lodging if you need to fly/drive elsewhere, not just for you but also for a companion (which is really important, I couldn’t have done this without ProfX).

The hardest part of the preparation was almost entirely unconnected with the donation process. As I mentioned, the Filgrastim/Neupogen causes a lot of bone pain. My plan for Friday – Sunday was pretty much to take painkillers regularly and zone out on the couch. Come Friday, I was already hurting by mid-mornings so I took the day off work after my shot & went home to pop my first painkiller.

Only it turns out I’m violently allergic to Tramadol, the painkiller they gave me. Had we known, I’d have been given something else. I actually ended up in an ER because I was so sick, constantly vomiting, and got dehydrated and started passing out (I’d initially thought maybe I could wait it out). The ER folks had a briefing from my supervising doctor & took great care of me. It’s the only time I’ve been through triage in less than 15 min, and had there not been a stabbing victim ahead of me, it’d have been faster. I spent Friday night-early Saturday morning in the ER, then had a checkup with the donation doctor/nurse to see if I was still well enough to donate.

The worst part was before I got to the ER. Being in the ER wasn’t fun, but I felt so much better once I got an anti-nausea med and a liter of saline that I was happy to just lie there.

The checkup on Saturday went well. They gave me a smaller dose of the Filgrastim because they weren’t letting me take any painkillers until Sunday, but I checked out ok and I felt like I was still up for it. On Sunday I took oxy-codone, which I’d had before and was exactly what I needed for the pain.

The Day I Donated

I donated on Monday the 16th. Got up very early and headed out to the hospital. They had to do one last blood test to see if I had enough stem cells, make sure nothing was wrong, and then I could donate. The test came back fine, so I got a quick IV test. I really don’t like IVs or needles, they make me a bit queasy, but by this point I was desensitized to it. I’d been stabbed a lot that week.

Unfortunately, like many women, I just didn’t have the veins for the IV-in, IV-out system. So we went with a central line instead. I was not wild about it but also not going to back out at this point. The doctor convinced me that the neck really is better than the leg (she had very good points, I just felt squicky about my neck) and I got wheeled off to get the line put in.

Then back to the donation room. I got hooked up to the apheresis machine and soon got going. The donation itself was quite smooth. The only hitch I remember was a short period where I was losing too much calcium (a known possible side-effect they’d told me how to look out for), but they had a bag of it on hand and took care of it quickly. Because of the myriad of drugs in my system and the weekend I’d had, I just slept through most of it.

Near the end, I hallucinated faeries dancing around my nether regions and telling me that I couldn’t use the bedpan. So I just waited until it was all over to visit the bathroom. Gotta obey the faeries. That was weird, but not bad-weird.

After the donation was over, the courier showed up and they showed me the collection before sending it off with him. It was awesome to think “Wow, my body made that and it’s going to go help someone now!”

I felt well enough to celebrate with pizza that night (which the NMDP covered, since there was no way ProfX or I could’ve cooked anything). I’d saved up enough time to take the week off, so I rested up, went to an Amanda Palmer show Thursday (not my brightest idea, perhaps, but very worth it), aced the GRE Friday, and was back at work the next Monday. It was one of the craziest weeks of my life.

If You’re Going to Donate

It’s hard to say no when you’re aware that you may very well be the only chance this person has at surviving. But donating is a big commitment and it definitely involves some risk. A year later, my experience feels like a good one. At the time, I was mostly exhausted but felt successful.

The doctor/nurse/aid trio at Georgetown made me feel like I was in good hands. They answered my questions, they checked me out rather extensively after my ER visit, they talked with me about my frame of mind, and they told me periodically that I could back out or I could reschedule if I didn’t feel I was able to do it right now. I felt like I was their patient, which is how it should be.

I also had a very good experience with my NMDP liaison, who walked me through the 4-5 months before the donation and followed-up with me several times afterward.

The big problem for me was a previously-unknown allergy to a painkiller, which I don’t really see as part of the donation process. But if you’re donating PBSC I suggest talking with your doctor about the painkillers. If you’ve taken a heavy-strength one before (I took oxy-codone after a surgery when I was 16), then let them know that it worked for you.

One Year Later

This last year has actually been kind of hellish. I’ve often felt completely impotent, buffeted by fates and chance and other people. I’m grateful that I can look back and pinpoint somewhere that I was able to make a difference for another person, a lasting difference. I hope that he gets entirely better, but even if I was just able to give him another year or two, I know first-hand what that means to a family.