Good morning everyone! Today I want to veer way off-topic and share with y’all something very non-sewing – which is my recent bone marrow donation!
Before I go any farther, I do want to address the question that I have been asked the most – “Doesn’t donating bone marrow hurt really bad?” The short answer is, nope! I realize that “painful” can mean different things for different people – pain is subjective and we all have different tolerence levels! – but for me, I experienced very minor, very manageable pain (all post-procedure), no worse than the soreness you experience after exercising for the first time after a long hiatus. I believe the procedure was painful in the past, but that has not been the case for a long time. There are two ways to extract the marrow – one is surgical, one is not. You can read more about those here on Be The Match.
I initially wasn’t planning on sharing this story on my blog at all. However, the staggering amount of misinformation I’ve come across (primarily from well-meaning friends when I told them what I was up to) has led me to believe that it would be a disservice not to use my platform to share my own experience. A lot of the information you may know about donating bone marrow is out of date, or simply not true. I would, of course, encourage you to do your own research as well – but if one person signs up for the registry as a result of this post, and maybe even is found to be a potential match…. That’d be pretty fucking rad.
Anyway, moving on! I have been on the bone marrow donor registry (via Be The Match) since 2009, but wasn’t contacted until earlier this year. Lots of people who sign up for the registry and may never get the call. I honestly had forgotten about it; it’s been 12 years! I joined the registry by requesting a kit, which was mailed to me. I swabbed my cheek and mailed it back. I did not pay for anything. When they contacted me this year, it was via email with a request to call for more information. I spoke to a rep who answered all my questions (I probably asked her the pain question LOL) and once I agreed to proceed they put me on standby while they looked at other options to determine what was best for the patient.
Not gonna lie – getting the call and being told I was the “best possible option” kind of felt like I won a prize. Me! I’m the best! Hell yea!
The process leading up to the donation did not require too much of my time or effort on my end. I was assigned a rep who went over the procedure and everything with me, answered all my questions, and was my point of contact for everything related to the donation. My rep had actually donated marrow herself so she was a great resource to direct all my questions to! I went through a full physical and blood panel (including an EKG and chest x rays – side note, I had no idea my boobs would be fully visible in a chest x ray but they were and that was cool lol) to be sure it was safe for me to donate, plus a couple rounds of blood withdrawal in those last 2 weeks. The hardest part was coordinating a date for the donation – as I had a full travel+teaching schedule already booked, and my recipient is in another country so there were only certain days they were able to do the donation, plus we had to find a donation center that actually had availability for the surgery. My rep was adamant that I not change anything about my own schedule, that they would work around me, but I was just as adamant that we do the procedure as soon as we possibly could because I didn’t want my recipient to have to wait (I can’t imagine needing to wait months for a life-saving transplant???). I ended up getting booked for mid-June, between workshops, at Georgetown University Hospital in Washington DC.
All my travel arrangements (flights, hotel, etc) were booked and paid for by Be The Match. I was allowed to bring a companion – obviously I brought my mom (the ONLY person I want around when I’m not feeling well!). While there were a few things I had to pay for out of pocket (medications and supplements, and our meals during the trip), those were all reimbursed after the donation. In short, I did not pay for anything in order to donate bone marrow. Every single expense was covered by Be The Match.
The donation itself was as uneventful as you’d hope for surgery to go. I was put under anesthesia, they perforated two small holes in my lower back (right where the back dimples are), stuck a couple needles in to extract the marrow (they used the word “harvest” which honestly grosses me out so much LOL) and they were finished within 90 minutes. I was hoping for an outpatient situation – usually the case with marrow donation – but I ended up getting pretty nauseous from the anesthesia + low blood sugar (both are normal for me) so they kept me overnight. I wasn’t terribly happy about at first but honesty it was kind of awesome. The nurses were so kind and took really great care of me. I don’t want to say the whole experience was completely painless – because it wasn’t – but at most my pain was maybe 5/10. It was very very manageable with painkillers. The staff at the hospital was EXCEPTIONAL with their care and attention. They even gave me a goody bag when I left (and my emotional ass totally cried about it LOL). Unfortunately, my mom was not allowed to visit me due to COVID so she stayed in the hotel – but they set her up with a Lyft account so she could explore DC (at no expense to her) if she wished.
Overall, I was in DC for about three days. We flew in the day before, spent some time being cute tourists, I had my donation the second day, and on the third day we left and were home by about 5 PM.
One thing I was not prepared for with this donation was the recovery process. It’s not awful – but since you’ve had a lot of your marrow taken out, there are some limitations in order to allow your body to heal. For example, our flights home had me in a wheelchair to get around the airport (let me tell you, skipping all those lines was quite the silver lining woohoo) (I even got to ride in the little CAR at one airport!), and I wasn’t allowed to exercise or lift anything over 20 lbs for the first 2 weeks. I was also very, very tired. Like the sort of fatigue that you feel in your bones when you are ill. Even that honestly would have been manageable, but, I unfortunately underestimated just HOW TIRED I would be (I cannot emphasize this enough) and went straight back into traveling and teaching 2 days after donation. I managed and I lived, but it was a real struggle that I could have easily prevented by allowing myself ample time to rest. I really should have given myself at least a week to rest and recuperate before trying to go back to work.
I’m a few weeks out from my donation now, and basically back to normal – no lifting or exercise restrictions, my energy levels and appetite are completely back to their original baseline, and while I occasionally have some subtle soreness in my lower back first thing in the morning or if I stand for too long, a Tylenol knocks it out no problem. My incisions healed up without an issue, and I sort of hope they leave cute scars (just little dots on my back, super cute).
My biggest advice if you’re considering doing this – do it! Sign up for the registry now. If you are a match, you are under no obligation to donate. For real, I had SEVERAL opportunities to back out. No one would have been mad. So if you’re on the fence, understand that signing up for the registry does not automatically mean you *have* to donate if you are a match. You can say no; it is your body and ultimately your decision to make. There’s a huge chance you’ll never be called to donate – but if there is, and if you decide to do it, you will be giving a person and their family the greatest gift of all time. You get to call yourself a superhero! I think that’s pretty cool.
My other advice is to make sure you allow for ample time to rest! I really cannot stress this enough. There is no way of knowing how your body will react to the donation – some people bounce right back to normal, some have a little more of a struggle (my nurses told me stories about how some patients were running laps around the hospital within hours of surgery; meanwhile I was struggling to walk to the bathroom without throwing up!). My own struggle was directly related to the amount of rest I didn’t allow myself, and I definitely should have allowed for at least a week to recover. Go ahead and block off ample time for recovery – if you feel good, great! You can easily schedule things as you feel up to it. But also, you just donated bone marrow so it’s perfectly acceptable to spend a week sleeping on the couch in your underwear while watching Cosmos and eating peanut butter (my ideal situation).
I don’t want this to sound like it was a total walk in the park – I certainly experienced side effects that were less than pleasant, such as muscle soreness, bloating/constipation, and trouble sleeping for the first couple of nights. My entire body swelled up with all the fluid I was pumped with, and I had lil’ fat kid hands for about 2 days (see below photo LOL) and could not wear normal/non-elastic pants. Not to mention that fatigue! WOOF. But all my side effects went away within a couple of weeks, and at no point during ANY of this did I regret my decision to donate. I’ve put myself through way worse discomfort (piercings, tattoos, body waxing, IUD insertion and subsequent replacement, drunken slip’n’slides, etc) without a second thought. I’ve fractured my elbow, endured kidney stones, and once I woke up during a wisdom tooth extraction. This is NOTHING compared to any of those painful experiences. The difference with bone marrow donation is that I saved someone’s life. I gave someone a second chance.
Would I do this again? Absolutely I would, without hesitation. Losing my dad to cancer 4+ years ago was one of the hardest things I’ve ever had to experience, and I would have done anything to keep him alive. While there were unfortunately no options available for us to keep him earthbound, it is such an incredible honor to know that I can provide that hope and second chance for someone else. My body is strong, able, and healthy – I think we often forget just how able we are in comparison to others who may not be so fortunate (wheeling around the airport in a wheelchair – while admittedly fun – was a stark reminder of that in itself). Sharing my own good fortune with someone who needs it feels like the most appropriate way to truly appreciate the privilege of my good health. The recipient of my marrow is a young person in another country (please understand that due to patient privacy, I am being intentionally vague here), and I’ll probably never meet or interact with them. But I hope they know that I am rooting for them, and I hope my marrow works as magically for them as it has for me. It’s pretty good stuff!
Well this got way longer than I expected it to be! In closing, I want to share some photos that my mom took while we were in DC the day before my donation. We went down to the National Mall and walked around for the afternoon, which was so lovely. And yes, I made those pants! I used the True Bias Hudson Pants as my base, and widened the legs + raised the waistline. My fabric is a viscose/linen noil from Blackbird fabrics, so to accommodate I sized up to an 8 (I normally wear a 2 in knit Hudson pants). I also changed the pockets to be patch pockets, instead of slant. This was a quick and easy make that is great for traveling and also wearing when it’s a thousand degrees outside but you’d still like a little leg coverage!
Are you on the bone marrow registry? Have you ever donated? What was your experience like?
LLADYBIRD 