My bone marrow donation story
This isn’t exactly travel-related, but I get a lot of questions about my experience as a bone marrow donor so I thought I would share that here. When I was around 13 years old, I wrote a bucket list and I wrote that my top 3 items were:
Visit all 7 continents
Donate a kidney or something
Fall and stay in love
So as you can see, I have always loved traveling and have always wanted to donate “a kidney or something.” During my internship at ALSAC, I volunteered at the expo for the St. Jude Memphis Marathon Weekend in early December of 2015. I noticed the DKMS (a non-profit for bone marrow and stem cell donations to treat blood disorders and cancers) table and asked them some questions. Here’s how the conversation went:
Me: Hey! I’m interested in donating bone marrow! What do I do?
Them: You swab your cheek with this q-tip and we send it to the lab and enter you into our database! However, you probably won’t be matched. It’s a less than 1% chance. Don’t get your hopes up.
Me: Okay sweet I like those odds. *swabbed the inside of my cheek*
Them: And you get a keychain saying you’re on the registry.
So I swabbed my cheek, went on my way, and promptly forgot about it.
On April 22, 2016, a mere 4 months later, I received a call from a New York City number while I was at my internship, and I ignored it. They left me a voicemail saying “Hey, this is DKMS. We’re trying to reach Jordan who signed up to be a bone marrow donor at the St. Jude Marathon in December. We think you’re a potential match. Please give us a call back.”
I listened to it, ran to my manager to whom I was close, and said “I think I’m going to be a bone marrow donor???” I left work and called them back. They said I was a potential match and needed to have additional blood drawn to see if I was the best possible match for a stranger.
At the time, I was going through a hard time personally. I felt lost, I didn’t feel good about myself, and I wasn’t making the best choices. This felt like a sign from God or Mother Earth or the Cosmic Turtle. This was something I could focus on and knew would change my life.
A week later, I got 10 vials of blood drawn and a pregnancy test to make sure I was the best match (and that I wasn’t pregnant since you can’t donate if you’re pregnant). About 2 weeks later, they called me and said I was a perfect 10/10 match (which is based off of your alleles. I still don’t quite understand exactly what that means but that’s what they said). The match only had a 0.037% chance of happening. This means you cannot back out. If you back out, your potential recipient could very much die.
They said I had 2 options of donating and it depended on my recipient’s need.
Peripheral Blood Stem Cell Donation: this is very similar to donating platelets. You’ll receive daily shots for about 4 days before donating to rapidly increase your stem cell production. You might have some flu-like symptoms, but they’re pretty mild. Then on donation day, you are hooked up to an IV and they pull out your blood, separate the stem cells, then return the whole blood. This process takes about 6-8 hours and is pretty mild. This accounts for about 75% of donations
Mature Bone Marrow Harvest: this is the one everyone thinks of when thinking of bone marrow donations. They determine how much of your marrow they can take based on your height and weight vs how much your recipient needs. You’re put to sleep and they use a long needle to withdraw marrow from your pelvis. This accounts for about 25% of donations and is typically used when your recipient is a child or in critical condition and doesn’t have enough time to produce bone marrow from the stem cell donation.
Guess which one your girl got.
My contact at DKMS, Ashlee, was incredible. My mom and I emailed and called her dozens of times asking questions about the process before donating, the process of donating, the follow-up issues, common side effects, my recipient, so, so many questions. She answered every question with so much kindness and revealed as much as she could about my recipient.
At the time, I was only allowed to know that my recipient was a 26-year-old male from the United States and that he had severe aplastic anemia. SAA is an autoimmune disease where your body fails to produce blood cells in sufficient numbers. It can be devastating and debilitating and can result in more infections due to the decreased production of white blood cells.
DKMS gave me the option of choosing to donate in Atlanta, St. Louis, or Washington, D.C. I chose Atlanta since I love the aquarium there, and I felt like that would be a good treat for me post-donation :). About a month before my donation, DKMS flew me to Atlanta for a day to get my pre-op check-up at Emory. I got blood drawn to check everything, x-rays, EKGs, a full physical, another pregnancy test, and did a self-autologous blood draw to be used after my donation to help replenish my blood loss. During this whole process, I had 46 vials of blood drawn.
During this time, I honestly was very resolved about the procedure. I was worried about being put to sleep, but I was very calm about the idea of a giant needle being stuck in my pelvis in 8 spots. I was doing hot pilates every day and eating healthier than ever. I was wanting to be the healthiest I could be because in my mind this meant my marrow would be better for my recipient. My mom is a school nurse and all of her summer camp kids had written me good luck cards and notes, and I felt so supported by everyone. The day before we left though, her dog ate all of my scripts, cards, and paperwork. Ashlee was on it though and got everything squared away for us :)
On July 4, 2016, my mom, stepdad, and I drove to Atlanta for my donation. Our car window shattered on the way down, so we had to put a trash bag over it for the remaining 3 hour drive. We checked into our hotel right next to Emory and got ready for bed since I had to be at the hospital at 4:30 am.
Early morning rolled around very quickly and we were on our way to Emory. When we got there, it hit me what exactly I was about to do and I started getting nervous. They put me in a room and when my surgeon, Dr. Waller, came in and asked how I was feeling, I immediately said “I need a Xanax.” (Probably not the best way to start the morning, but I was having some major anxiety). They got me taken care of while Dr. Waller asked if I had any questions.
My only question in my drug-induced state was, “How many people will see my butt?” After he said, “A few,” a nurse corrected him by saying “I’ll cover you up, honey.” Then they wheeled me back.
During this time, they made 4 quarter-inch incisions along my pelvis and stuck a long needle into 8 spots within those 4 incisions. They withdrew 1.2 liters of my marrow.
The next thing I remember was waking up and having some discomfort and waiting to get Zofran so I could get some pain medication. I had some difficulty walking due to being weak from the blood volume loss, and was suuuuper tired. We went back to the hotel and I slept HARD.
my sea boyfriend, Nav
As I said earlier, I LOVE the Georgia Aquarium. My mom had posted that we were going to visit after my donation and one of our church friends said she knew the Chief Financial Officer at the aquarium. She was so kind and set up a whole behind the scenes tour for me. They had a wheelchair waiting and a private tour guide. They showed me where they make the saltwater, the whale shark feeding, and interviewed me to be their “Fin-tastic Fan of the Week.” During this interview, a sea lion came walking out to greet me and I got to meet Nav.
A few weeks later, and much earlier than I had expected, I was allowed to send a message to my recipient. We couldn’t exchange any identifying information until the 6-month mark (this varies for everyone depending on the country, HIPAA, recipient’s desires, etc.). I was so nervous about what to say and didn’t want to seem too overbearing; however, I had become attached to the idea of this person. I wanted to send him care packages of his favorite snacks with some books. I created this fantasy in my head that we’d meet, and it’d be such an incredible experience. That it would go viral like all of the other meet videos and we could encourage others to sign up and donate. I had visions of us being at each other’s weddings, the birth of children, and meeting each other’s family. When you donate bone marrow or stem cells, your recipient actively reproduces your DNA so they become human chimeras, meaning they have 2 sets of DNA. This fascinated me because, in my head, it wasn’t like a child that has a mesh of your DNA with someone else.
This whole other person has your.exact.DNA. Their blood type changes to your blood type. If they tested his blood, it could come up with female DNA due to him reproducing my DNA. Some research has shown that they start developing food cravings for foods you eat often (so I joked he’d be eating a ton of barbecue, bread, and cheese, gain 20 pounds, and hate me). It’s an incredibly bonding experience to go through, especially for an emotional person like me knowing that a person has my exact DNA coursing through his veins.
Around November of 2016, I received a response from my recipient, or rather, his wife. She informed me that while the bone marrow was working, he had developed a kidney infection and did not make it. I was absolutely crushed. I was grieving for this man I had never met, and would never meet. Not only was I mourning this person, but the ideas and dreams I had of and for him.
People had been tagging me in and sending me videos of donors meeting their recipients, and I had to grieve the thought of me never meeting him now. I know everyone meant well in sharing those videos, and I loved seeing for those involved in those videos, but it was heartbreaking knowing that would never be me. I was grieving for his wife, his family, and friends. Knowing that we had all gotten our hopes up for this. Knowing that being a match, and being a PERFECT match was so rare. I know everyone involved had such high hopes for this to work out for him. I felt like I had failed.
Sometimes I look at his Facebook and I see that he was so funny and had some killer comebacks to his friends. I see that he was so loved by so many people. I see that he was a real person. I’ve saved every letter from his wife and re-read them every once in a while. I feel so deeply for his mother and father, who still post photos of him and memories they cherish, knowing that they are still grieving, and that I’m a silent observer who has her private version of this pain and loss.
His wife and I kept in touch. We haven’t met yet, but I plan to one day. I don’t regret this one bit and am back on the registry hoping to be matched again someday.
Brock, I think of you daily and can’t wait to meet you one day.
FAQs:
Does it hurt?
Yes, but not as much as you’d think. If you do the mature bone marrow harvest, you’re put to sleep. When you wake up, that’s the worst part pain-wise. They usually have pain medication pumping immediately as you’re waking up. I had to wait since I asked to take some anti-nausea with it. Other than that, I just felt very tired and weak.
What’s the recovery like?
It took me about a week and a half to feel mostly normal. I was still very tired and pretty weak, but I was mostly fine by the week and a half - two week mark.
Is there a financial impact?
I was working hourly at the time and DKMS refunded me every expense we had (gas, food, additional doctor visits) and my lost time at work. If you are salary, this won’t work and you’ll have to take time off. Don’t let this deter you though.
Do you have scars?
I have 4 teeny tiny baby scars on my back hips. Honestly, my cats have given me bigger scars. I thought I’d have some awesome scars that I could show off like battle wounds.
If there are any other questions you have, please feel free to reach out! I know this isn’t travel related, but I wanted to share this entire experience on a public platform since people tend to have questions about it. I highly, highly, highly encourage you all to sign up. And if you do, please follow through.