This is an account of every step between joining a donation registry and eventually matching with and donating to my recipient. If there is one take away from all this, make it that I had the most intensely expedited and extreme version of all possible experiences – complete with COVID-19 screenings and a city-wide curfew – and it still wasn’t that bad. At all.
It’s so easy, and you might literally end up helping save someone’s life. Learn more and please consider joining at https://join.bethematch.org.
On Thursday, January 26, 2012, for some reason I can’t remember, I decided to go to BeTheMatch.org and order a mouth-swab kit to join the bone marrow donation registry. Within three months, I had promptly forgotten I’d done that and somehow lost the mailer.
But, in late September of the same year, I found the kit in a pile of mail in a corner somewhere in my grad school apartment. I’d like to take this moment to blame one of my roommates. I promptly followed the simple instructions and sent it back in.
On October 4, Be the Match acknowledged via email that my kit had been received, and on October 19, let me know that I was officially part of the registry. I barely thought about it ever again, except whenever a new meme popped up about how ancestry sites are probably selling our DNA to the governmental agencies (some are, and some aren’t, at least not yet, and absolutely none of them are associated with bone marrow registries).
Until, two Tuesdays ago on May 19, 2020, I received a phone call from an unrecognized number, although I recognized it as being a local area code. I answer those more now that Android’s pretty good about labeling suspected spammers, so I accepted the call.
Instead of a robocall recording, I instead started speaking with a young woman informing me that I had matched with a potential recipient of my stem cells. A 16-year-old boy was suffering from severe aplastic anemia, an often-fatal disease in which the body stops making new blood cells. There had been one failed donation attempt already. I was the second chance to save his life, it was extremely urgent, and would I be interested in beginning the screening process?
The first thing I did was ask her to wait a moment while I searched for her phone number online, which verified she was exactly who she said she was. The second thing I did was say, “Holy crap, of course.”
If I had to describe the call, I would say she was polite to the point of trepidation. In the past two weeks, I’ve learned that this is because people turn down these calls all the time. I’m lucky enough to not have any past trauma or major horror stories associated with medical procedures, nor do I have any negative personal associations with the term stem cells, which, just to be clear, just means blood-forming cells acquired by a regular old needles in your arm, similar to when you donate blood or especially platelets. This version of the procedure is called a peripheral blood stem cell donation, but due to the amount needed and urgency in my case, I would be taking part in a bone marrow harvest, during which they would poke a needle into my pelvis a bunch of times. Here are the differences between the two methods:
Peripheral Blood Stem Cell Donation (PBSC)
- Uses the same blood-forming cells found in bone marrow, donated instead from the circulating (peripheral) blood
- A nonsurgical procedure called apheresis that takes place at an experienced blood center or outpatient hospital facility
- Involves 5 daily injections of a drug called filgrastim leading up to the donation. This increases the number of blood-forming cells in the bloodstream.
- Blood is removed through a needle in one arm and passed through a machine that collects only the blood-forming cells. The remaining blood is returned to through a needle in the other arm.
- 90% of all PBSC donations are completed in 1 apheresis session, which may take up to 8 hours. The remaining 10% of the donations are completed in 2 apheresis sessions, which will take 4 to 6 hours each.
- Some donors may experience bone, muscle, or headaches prior to the donation from the filgrastim
- The donor generally fully recovers 7-10 days after donation.
Bone Marrow Harvest
- Extracts blood-forming cells directly from bone marrow in the pelvis
- A surgical procedure that creates small incisions in the skin and bone, through which blood-forming cells are harvested multiple times at various angles
- Puts the donor under general anesthesia (completely knocked out) for the entire operation
- No prep drugs besides supplements (more on this later)
- One session of 1-2 hours
- Recovery time depends on the amount harvested, usually 3-7 days to return to school/work, and 2-4 weeks for marrow levels to return to normal
There are a lot of resources out there for PBSC, because it’s by far the most common form you’ll see these days. Though the drugs given leading up to that donation occasionally causes mild side effects, and many are familiar with the feelings of fatigue following any form of blood donation, most interviews I’ve watched agree the worst part of the procedure is boredom, as the session lasts up to 8 hours of lying in a bed doing nothing.
But, I didn’t go through that kind. I was a double rare case: someone who not only got the call to be a match, but who would be going through the expedited process, skipping several preparation steps, and harvesting a very large amount of cells directly from the bone.
The first screening was that initial phone call I got out of the blue. It was informal and took about half an hour. It was very similar to those questionnaires they make you fill out the first time you visit a new primary care physician at the office, just verbal. It was also unique because the end of it was tacked on with several coronavirus-specific questions. They also asked very specific questions about diseases like Zika, West Nile, and hepatitis, since the donor at the time of transplant will have no immune system to fight off those infections if they’re introduced to his system.
The second screening was another, more formal phone call that took around an hour. This was with my coordinator, who was involved in every step of the process from here on out. This interview asked most of the same questions with greater specificity, and went more in-depth into family health history and things like that. At this point, I had done some research online, so she stayed on after the official screening to answer questions of my own.
No, this would not cost me a cent. Everything was covered, right down to gas mileage and if I stopped for a snack on the way to the hospital, City of Hope in Duarte, CA (just east of Pasadena). It didn’t even involve my health insurance, at all. If I’d had to fly to a different city or state, they would have covered the flight completely. They were extremely adamant about this.
Yes, there will be physical discomfort. This was the price we had to pay due to the severity of the circumstances resulting in a shorter timeline and more involved procedure.
No, unfortunately she could not share personal info on the recipient due to HIPAA regulations. She had no idea how anyone could match with me – a half-Syrian, half-Welsh/Irish monstrosity of genetic rarity, but this unique background became an ongoing point of conversation as I met more and more of my team.
It is in no way guaranteed that the procedure would be successful. There was – and still is, as I type this – the possibility that I would go though this and still not save this teenager’s life. Indeed, a failure had already happened once.
At this point the sadness of these conversations really started to sink in. The odds are that I matched because I have Middle Eastern ancestry, and minorities are at a far, far greater risk of never finding a match for a transplant. That goes double for uniquely multiracial folks like myself. And even then, many people sign up initially, but eventually decline the procedure for reasons of their own.
The way these screenings play out are so careful, so delicate toward the donor, it grew clear that they are doing everything in their power to avoid scaring off the potential donor, to try and avoid something that apparently happens fairly often. But all I felt was excitement. I could help someone. I let my coordinator know that, emphatically, yes, I still wanted to help.
One week after I received the original call, I found myself in a hospital for the first time in years. Because these are the times we live in, I went through COVID-19 tents on the way in, during which my temperature was taken and I was given an N95 mask to wear at all times. I met with my coordinator in person and proceeded to answer more questions, this time on paper. Then, no less than sixteen vials of blood were drawn, which is a record for me, and after that I met with the doctor and nurse who would be running the procedure.
Both of them had gone through this many, many times and were able to tell me everything there was to know. Four incisions with a scalpel, then a big, hollow, diamond-tipped T-shaped needle that pierces the bone, through which that sweet marrow gets harvested like a 100 times or more. Googling around for this, it seems like they don’t get too graphic about this, because they don’t want to scare people. I dunno, I think it’s pretty metal, but who am I to judge?
By the end of this day, despite a few blood test results still pending, it becomes increasingly likely that this was going to happen. As the head nurse put it, “You’re boring.” By that she meant, I don’t have anything of note on my medical records, like, at all. The most significant outliers in my results were:
- Liver something or other levels, which I attributed to a few beers at a socially distanced birthday party the previous day (my coordinator said I could, okay?)
- Cholesterol levels slightly heightened (I have definitely gained the COVID nineteen, if you know what I mean)
- My hemoglobin levels were at 16.0 g/dL even, where 16.1 was considered abnormally high.
My hemoglobin levels were the subject of much conjecture, with the doc asking if I was a smoker or had been at elevation recently to try and figure out why mine were so high. I still don’t really know – I have a suspicion it’s the caffeine in all the tea I drink, but that’s some armchair nonsense at best, so I never really brought it up.
Suffice to say, the hemoglobin thing is actually perfect for this procedure, since that’s the number that drops after the harvest. The doctor informed me that my hemoglobin levels might drop as low as 11, which would result in a lot of fatigue and possible soreness/headaches until my cardiopulmonary system adjusted to the lower oxygen levels. Essentially, it would be like getting a really bad hangover, or going up a mountain way too fast. Finally, the big T-needle thing would cause my hips to be really sore for several days while the incisions closed up, the bone healed over, and my marrow slowly grew back.
Other than that, I was good to go. Approved marrow donor status achieved, assuming I didn’t get coronavirus before the donation date, which was set as Wednesday, June 3.
Due to COVID-19, I was asked (begged, really) to go into super-quarantine mode. I went and got groceries, just like I did back in mid-March when this whole thing started in California, and hunkered down. I canceled the socially distanced backyard movie night I’d planned for my birthday, which happened to be that Saturday, May 30. My friends hung out with me on Discord instead. It was chill.
I went on vitamin B12 complex and, most notably, iron supplements for the first time in my life. If you haven’t ever done iron, the number one side effect is sad, constipated poops the color of the blackest, darkest night. To combat that, I turned my whole daily diet toward fiber and probiotics, and after the first day or so, this was mild. Here’s what I ate every day, if you ever find yourself in a similar situation:
- Whole milk plain Greek yogurt with berries (from the freezer), granola, and a few drops of stevia (which I only like with yogurt, lol)
- Lifeway whole milk plain kefir
- 6 prunes or equivalent probiotic raisins/cranberries
- Fish oil pill
- Vitamin C powdered drink
- Daily multivitamins
- Stupid amounts of tea (but I do that anyway, because I’m a monster)
I also made a point to get a lot of meat protein every day for dinner and/or lunch, and to go out for a walk every day to get some exercise and sunlight. Other than that, I didn’t go out at all or go to any driveway hangs. It was late March all over again.
I want to also note that dosage on iron supplements is really weird. I was prescribed “Ferrous sulfate 325 mg (65 mg Fe)”. The way to interpret that is “65 mg of iron in 325 mg of ferrous sulfate.” I actually bought the wrong thing at first, which ended up being just 25 mg Fe from ferrous fumarate, because that hadn’t been labeled clearly at all. So be careful with that.
Finally, let me stress my timeline was extremely expedited compared to the normal experience, especially for the bone marrow harvest version of this procedure. Usually it’s a least a month between the physical screening and the donation. They also usually will have you donate a bunch of blood to yourself on the physical screening day. This is called an autologous (ah-TAH-luh-gus) donation, and the idea is to give this back to you right after the harvest to help speed up your recovery. Because I only had one week to prep, my team decided this would only end up making things harder for me, so this step got skipped – especially considering how high my aforementioned hemoglobin count was already.
With that done, I only had one final screening before the day of my donation.
COVID-19 Nasal Swab Test
The novel coronavirus test was set for the Tuesday before the donation. The reason for this is that, due to the weirdly long incubation period of this disease, I could conceivably contract it close to the donation date, receive a false negative on the COVID-19 screening, and then maybe inadvertently giving it to my recipient. I don’t actually know the mechanics of that, like, how contagious coronavirus would be to not only my medical team, but to the recipient as well. But I think it’s safe to assume if I tested positive, the whole thing would be called off.
It was a drivethru test that I was able to get during a long lunch from my job (I work in software and we’ve been remote since March 13). The test involves a specialist inserting a glorified cuetip into each nostril, rotating it for ten seconds each time. I jokingly referred to it as the “brain swab test” whenever it got brought up which generally got a pretty good laugh from the medical team.
Surprisingly, I was unable to find a recent video of the process that matched my experience, so here’s the video I took of the drivethru nasal swab COVID-19 test at City of Hope hospital as of June 2020.
It was uncomfortable, but not too bad. I was actually one of the rare cases that got a bit of a headache afterward. Regardless, after about five hours, I was confirmed coronavirus-free. This thing was really happening.
The last food or drink I imbibed before the day of the procedure was at about 10:30 p.m. the prior evening (i.e., same day as the COVID-19 test). At 5 a.m. on Wednesday, June 3, 2020, I woke up with my amazing partner and drove to City of Hope hospital in Duarte, CA to begin prepping for my bone marrow harvest. In yet another surreal aspect of this entire process, the hospital had to issue us essential travel letters, because we would be leaving our house before curfew was lifted due to ongoing protests supporting justice for George Floyd.
We arrived just before 6 a.m., and then my girlfriend went back home, because coronavirus means all hospital visitors and companions are not allowed. The hospital was really good about keeping her updated on my progress and eventual pick-up instructions throughout the day.
My arrival time had originally been 7 a.m., actually, but for some reason it was pushed an hour earlier. I don’t know why that happened, and though it meant I had to wake up even earlier, I’m glad it happened. I was the first to arrive in the ward, meaning I zipped through all the tests and prep and stuff very efficiently. They drew yet more blood, and because I was dehydrated from food/water fasting, this was taken from a vein on the back of my right hand (the one in my arm kept collapsing, which apparently is one reason they always say drink lots of water before giving blood). I got to see the little cooler they were going to put my sample in, and meet everyone working the floor that day.
I won’t go into too many details about the staff at this point, but they were all incredible people. There is a very fulfilling reaction you get from medical professionals that you just kinda get used to. The vibe is very much like, “Hi, where are you headed? Great, please check-in here, you’re a really good person on a deep and fundamental level, elevators second right down this hall, have a good day, sir.” But everyone around you is helping save lives on the same level like, every hour of the day, every day, mostly thanklessly and often stressfully. So I just cannot stress enough how cared-for I felt during all this, and how appreciative I was of the City of Hope team.
By roughly 7:30 a.m., I was in an operation room. One of the medical assistants asked how much bone marrow they’d be taking, and when my doctor answered, the assistant said, “Oh, wow.” The anesthesiologist asked me to think about a nice vacation spot before I went fully under. I announced everyone I would be vehemently imagining my favorite spot in the world, Takaragawa Onsen hot springs inn in the Japanese Alps. As an oxygen mask was placed over my mouth and nose, someone made a joke about me being well-traveled, everyone chuckled, and then I woke up a couple hours later asking for water.
They were a little hesitant to give me the water, but they eventually gave in when I promised to only take small sips. My throat felt parched not only because I hadn’t drank water in 12 hours, but also because general anesthesia means breathing tube. My lower back hurt, so I asked my caretaker nurse for a bit more pain relief, which she provided in the form of a bit of Dilaudid in my IV. I fell back asleep and woke up around 10:30 a.m. feeling a lot better.
I’ve never done something like this as an adult, so everything about waking up from anesthesia was brand new to me. You feel pretty disoriented, but also a little euphoric. When they were sure I wasn’t going to throw up the water, one of the guys at the desk offered me some cookies and juice. I am still considering making him best man at my imaginary wedding and the godfather to all future children. My assigned caretaker (whose job it was to babysit my loopy ass the rest of the day) told me it was still a little too early for lunch. I did submit to a bit of further interrogation, but finally a lead on the floor caught our conversation and announced that I was a hero and shall not be denied one scrap of food requested. Obviously, I have informed my girlfriend that this lead nurse is going to be the bride at the wedding the other guy is best man at, I don’t care what society says.
Either City of Hope actually has a really great cafeteria, or I was just that starved. What I can absolutely guarantee is that I got a gourmet cookie they buy from a local bakery was straight from heaven. In addition to that, I had macaroni and cheese, a turkey sandwich, a lot of juice, and a few more treats that I only slightly had to slow down on toward the end.
At this point, security let me sign for getting my phone and wallet back, at which point I called my friends and family to pass the time until I was discharged. I was told this wasn’t likely to happen until at least 3:30 p.m. However, my lead nurse, a complete and total angel-person, got hold of my post-op test results, and interrupted her schedule to come over to my ward and officially get me out of there. It turns out my hemoglobin count had only dropped to 13. Specifically, she grinned and said, “Your blood levels are still higher than mine, you freak. Get out of here.”
I’m certain this is due at least in part to the iron supplements I’d been diligently taking, but still. You don’t really get to pat yourself on the back for your blood levels, okay? Just let me have this one.
Suffice to say, I let my partner know I was free by phone. They gave me a little paper bag with aftercare instructions and a painkiller called Norco. By 1:30 p.m., they wheeled me down to the car, and I was on my way home.
Upon returning home, I immediately took a much-needed 3-hour nap. I woke up to more phone calls and texts from friends and family. We had stocked up on recovery foods, and I’ll tell you thing I craved more than anything else was electrolytes. I hate how Pedialyte tastes, but I chugged a whole bottle of that rotten popsicle juice in like an hour.
The combination of Norco (which is the same as Vicodin, hydrocodone + tylenol) and the anesthesia leftovers felt very unpleasant. I was disoriented and unable to focus, and my stomach was pretty uncomfortable sometimes. I also had trouble sleeping that night as well, although part of that was probably due to the giant nap I took.
The next day was a lot easier. I was finally allowed to remove the enormous patch on my lower back and take a shower, which is when I learned they actually poked 7 holes down there. They were very tiny, about the size of an irritated bug bite. My physical discomfort (I think) comes mainly from the stress on the bones themselves. I was walking around well enough, albeit slow and shuffly. Bending at the waist while keeping my legs straight was completely out of the question. I mostly sat on the couch plus some extra pillows and watched movies or played videogames. I handled the Norco way better on day 2, also. For sleep, I asked my coordinator for some Tylenol + codeine to help with drowsiness.
I’m typing this on day 3 of recovery, Friday, and let me tell you I slept like a damn baby last night. I feel at least one order of magnitude better today. This recovery seems to happen at a pretty steep curve, which is great. Yesterday, I had to assist myself when standing up from a sitting position, but that’s not the case right now. I only took some Tylenol extra strength, and that’s managing the discomfort just fine. I am being careful not to overextend myself too quickly, but all in all I anticipate being mostly better by Sunday-ish.
And, well, that’s it, really. I will have some follow-up checkups because everyone is obsessed with taking blood samples at this point. My recipient will have started chemo by now to prevent his immune system from attacking my blood cell transplant (aka graft-vs-host disease). It’s actually fairly rare that he doesn’t have some form of cancer, instead only having the thing cancer often causes. It just so happens the treatment is the same.
I am not actually a hero and this was seriously not that hard
Something that I get a lot was, “You are saving a life.” I don’t think that’s quite right. I’m helping save a life. At one point during all this, my head nurse showed me callouses on her hands from how many times she’d helped perform this procedure. They’re the heroes. I’m just some random guy lucky enough to be able to help.
Beyond that, the real hero here is the sick person, the 16-year-old recipient whose struggle is and will extend far beyond this wild couple weeks I’ve just experienced. If you want just a tiny taste of the full process from start to finish from more perspectives than just my own, take a look at this breakdown from Johns Hopkins Medicine.
I will not get to know his name or background for something like 6 months to a year. His fight to survive is not over. But whoever he is out there, I know he can get through this.
For people like him everywhere, for all the strangers who deserve a fighting chance instead of a death sentence, please, consider joining the bone marrow registry at https://join.bethematch.org. Thank you for reading.