Yep. We’re talking about donating bone marrow today! I’ve been so overwhelmed with your positive responses to my news about donating bone marrow later this spring. Many of you have reached out – you’ve been asking questions, wanting to learn more about how to get involved, and for more information about the process. Some of you have even requested an at-home kit so you can be added to the registry! Well, I’m here to share my story and how this all came about. Remember, I am no expert about this, I’m simply a donor trying to increase awareness and hopefully demystify the process (opinions are all my own). I am not allowed to disclose much information about “my” patient and actually know very little myself. I can say that my patient is a toddler and I can’t imagine what the family is going through right now. WARNING: Long post ahead!
Don’t you like my braces?? We look so young.
Back in 2013, I ran my second half marathon in Nashville (see photo above!). Like most big races, there was a health/fitness related expo going on during race packet pickup. I always enjoy walking around and checking out the booths – there are usually yummy snacks to try – and feed off of the energy the other participants bring to the entire race weekend! This time, my mom came with me and we were walking around, chatting, and simply soaking it all up. We stopped at a booth and started talking to the people working it – they wanted to swab our cheeks for their bone marrow donor registry. I remember thinking… they’re going to swab my cheek and I’ll never hear from them again. How do they possibly keep everyone’s records up to date and accurate, especially at a big expo like this?
So we did it – we both had our cheeks swabbed with this Q-tip thing (totally painless), filled out the paperwork, and received a plastic donor card (that I threw away last year in the move!). I thought nothing of it for the next 3.5 years. I was going through a ton of old paperwork before we moved from Nashville and stumbled across the pamphlets, card, and info – I figured they’d find a way to reach me if they really needed me and tossed it all. I feel bad saying that, but it’s the truth – who needs more random papers lying around??
Anyways… let’s start a timeline of the process, shall we?
November 2016: (Just a few months ago) I received a phone call from a 212 area code. New York! I answered immediately. It was a woman from Be the Match (the organization that coordinates all of the bone marrow donations)! They manage the largest and most diverse marrow registry in the world!! She shared with me that after reviewing my “swab,” they thought I might be the best possible match for a patient in need of a donation. Without hesitation, I was immediately committed. How could I NOT move forward with at least learning more about the process? She shared next steps and said she’d be in touch. Talk about a cliffhanger! I wanted to know ASAP if I could potentially help save someone’s life.
December 2016: I had to go in for a complete blood test/analysis to make sure I am in fact, a perfect match. It took about 15 minutes and was pretty painless – just like a typical blood test. I also filled out a TON of paperwork – questions about where I’ve traveled, my health history, personal life, etc. What I love about working with Be the Match is that they handle all of the coordinating and scheduling, and that they’ve been in contact with me consistently throughout the entire process.
Mid-December 2016: I receive another call from my contact, and she tells me that we won’t be proceeding with the donation. Even though I was a match (blood test confirmed) they weren’t in need of my marrow – I was hopeful that my patient was on the upswing.
January 2017: I was at the Midway airport waiting for my mom to get off the plane and pick up her luggage before heading to our new house. I received another call from New York. I, of course, answer it not thinking anything of it. With all of the moving craziness I figured it was just another logistics call. Well guess what? It was Be the Match – calling to let me know that my patient does in fact need my marrow. This time, things progressed quickly – I had to fill out more paperwork and was emailed 7 LONG documents (like over 200 pages) to read through. We scheduled an overview/logistics call and walked through the process step-by-step. I was grateful my mom was in town because I was able to have her on the call, asking questions and thinking of things that I might have missed.
Given my patient’s size and condition, I will be donating actual bone marrow, not PBSC (the blood way). You can read more about the differences in donation types here. Am I scared? Absolutely! Any time you have surgery, it’s a little scary. But the good SO outweighs my fear. They’ll make 5-6 small incisions on the back of my pelvic bone. Using a special syringe/needle thing, they’ll be able to pull out the marrow directly. It’s then couriered to the patient within 48 hours! I’m hopeful the recovery will be quick and painless (I’m telling myself that it will be!).
March 2017: 3 hour physical exam to make sure I’m healthy enough to donate and ensure everything is good to go. Quality assurance, really.
May 2017: Donation + recovery. My donation will take place in early May at a hospital. Be the Match is flying my mom into the city to take care of me! I really have the best mom ever and am immensely grateful that she wants to be there for me. Recovery can take 1-2 weeks, and I’m not allowed to fly for 14 days after – we leave for Iceland at the end of May, so we had to schedule the procedure to fit within that time frame.
So that’s that! Of course, things can change up to the last minute due to the patient’s status, but if all goes as planned, I’ll have another update for you in May! And probably another one next month after my physical. My goal is to be as transparent as possible throughout the process – and hopefully inspire YOU to consider being part of the registry 🙂