Have you ever wondered what it’s really like to donate bone marrow?
On the website Reddit, there’s a thing called AMA, or Ask Me Anything. A bone marrow donor, Kristine Sydney, took to Reddit a while ago and told her story of submitting to be a donor, matching, and donating.
There’s a lot of realtalk in there and a lot of really helpful real-world info about bone marrow donation.
Instead of mystery and assumptions of painfulness surrounding bone marrow donation, there was heroism. And the knowledge that my body might cure cancer!
So let’s dive into Kristine’s story, and find out nine key things she wants everyone to know about bone marrow donation.
1. If you’re worried about the pain of the procedure … don’t worry!
I know I’ve thought, “I would love to register as a donor, but I don’t like a lot of pain.” (Does anyone?) “I can do blood donation, sure, but needle into my bone? NOT REALLY FEELIN’ THAT.“
Here’s how the procedure felt in Kristine’s words:
“Before the procedure, though I had read about other donors’ experiences, it was impossible for me to anticipate how little or how much I would hurt afterwards. Before I left the hospital, the doctor told me explicitly not to lift heavy weights or go on a long run for several days – even if I felt little to no pain. ‘It’s still a surgical procedure,’ she reminded me. My lower back/hip area was tender for three-four days but that was it and, if not for her warning, I would have returned to my regular activity a couple days after the procedure.”
After reading this testimony (and this) my brain said … sign up. But I was still skeptical.
2. The medical procedure could turn into a beautiful experience.
It’s true that if you do match, you’ll undergo some medical procedures. But you also might wind up with some new friends for life.
One of the most popular questions of this web interview with Kristine was from the mother of the child Kristine’s bone marrow helped.
“Hi Kristine, first off, thank you for saving my baby! What would you say to someone who is skeptical about signing up or perhaps fearful of donating their bone marrow & is only willing to donate plasma?”
“Mia, I’m grateful you released your information. My life is transformed by Mailyna. For those who are still fearful, I’d suggest that they check out this Reddit, the AADP video, or even the picture of me the morning after the procedure. They should read up on what the process is actually like and not be scared away by the word ‘donor.’ Maybe a more appropriate, friendlier term is ‘sharing.’ The doctors took only less than 5% of my bone marrow, so my tiny, tiny, tiny gift, which was replenished, made that difference. It’s like magic — truly — how the simplest of procedures and the tiniest of Band-Aids can save a life. I consider myself so lucky to have met your daughter and your family.“
Mailyna’s mom’s reply?
“We adore you! You & Jake will forever be a part of our lives AND our family!“
Well now. That’s great.
3. Donating doesn’t take that long.
Signing up only takes about 15 minutes. Then you swab your cheek and pop the swabs in the mail. That might be all. If you get a call as a match, there’s a 25% chance you’ll move to the donating phase.
Kristine details what happens next:
“After you get the initial call, you go and get some blood drawn to see whether you’re a good enough/perfect match. If you are the best bet, you then go for a full physical, which includes getting more blood drawn, a urine analysis, a chest x-ray, and an EKG. If you are healthy enough to give bone marrow, you wait to hear when your recipient is ready to begin chemotherapy. In the best way, being told that you are a donor is getting a gold star for being in good shape, for being healthy.“
After the donation:
“It’s usually an out-patient process or an overnight stay. I stayed overnight (because of nausea from the anaesthesia.) I checked out of the hospital after breakfast the next morning.”
4. You don’t have to be a superhero to do it.
Kristine is clearly a cool lady, but she’s not, like, Mr. Rogers or Batman or anything.
“I didn’t think twice about donating, and now that I’ve done it and I’ve met Mailyna, I do feel that there is a human, compassionate obligation to register and then to donate. There isn’t any reason not to do it. If you’re eligible to donate, you are the lucky one, because your being chosen means that you’re healthy and you’re literally carrying someone’s cure in your blood. What a gift it is to get the call.”
5. There are plenty of good reasons to donate.
How about doing it to honor someone you lost? That’s what Kristine did.
“I was mourning the loss of my former student Elizabeth, who had died exactly a month before I signed up. She died of brain cancer and, on my walk home from work, I saw a poster with pictures of children, all ethnic minorities, who needed to find a match. I signed up to honor Elizabeth, who was only a college sophomore, a child, when she died. … I registered anyway, with the hope that, if I were picked, I could, perhaps, help another child.“
6. Still think it’s painful? Nah.
I wanted to address the pain thing again because it was a big concern of mine.
The procedure for those who donate is usually an outpatient process or overnight stay. Kristine said she stayed overnight due to nausea from the anesthesia. And the pain? She described it like this:
“(Like) pressing into your lower back with your thumb — with medium pressure only … for about three or four days.”
Everyone do that now. Go on…
Not too bad, right? I’ve danced a little too hard at a wedding and felt worse pain, and the result of that dance was NOT curing someone’s cancer with my body!
7. She didn’t have to pay for the medical care.
The pre-screening for bone marrow donation (and this is if you match) is a full physical: blood tests, urine analysis, chest x-ray, and an EKG.
Good news. The National Marrow Donor Program paid for everything in Kristine’s case.
“The National Marrow Donor Program, which operates Be the Match (the organization with which I signed up), paid for everything, from hospital stay to the hotel room to my dinner the night before the procedure. They took care of everything.”
8. You don’t have to know where your marrow goes if you don’t want to.
Some people worry they’ll feel bad if they donate and the recipient doesn’t survive.
Whoa. Realtalk express, coming into the station here.
Firstly, the point is not to be Superman, but to take a chance and take the opportunity. And if that doesn’t assuage your qualms, the whole shebang is VERY anonymous.
“The donation process is still anonymous. We were not allowed to exchange any information about ourselves until a year after the transplant. In fact, any correspondence I sent was first screened by the Rhode Island Blood Center to make sure that I did not share anything specific about myself (name, location, where I worked.) “
You’re anonymous from the start. That’s very important.
“In early May, a year after the transplant, my recipient and I were asked whether we wanted to release our information to each other. We both said “yes” and, in a moment of synchronicity, Mailyna’s mother Mia had hit “send” on an e-mail the second I dialed her number. In July, the Asian American Donor Program (AADP) flew my husband and me out to California where we met for the first time at Kaiser Permanente where she had been treated.”
After some time, recipients and donors can choose to release their info to each other. There’s no pressure to do it, but for Kristine, meeting her recipient clearly had a big impact on her.
9. Bone marrow can essentially cure some types of cancer.
Your body may have the cure for cancer in it! How cool is that!
Kristine states it perfectly:
“How amazing it is that another human body literally has the potential to be someone else’s cure… It’s hard for me, even now, to wrap my mind around it.“
This online interview with Kristine had a huge impact on me.
Not because I need bone marrow or even because I know someone who does.
It’s personal to me because while I’m a blood donor, I was kinda squeamish about signing up to be a bone marrow donor. It just seemed like signing up for the most painful, paperworky, awkward, and (again) painful experience of life.
I was so wrong.
So while I was writing this, I went to www.aadp.org/homekit and asked for a kit in the mail!
“When I met Mailyna, I also met Myla, another girl who is looking for her perfect match. I wish so badly that any of the people who need bone marrow would get a call saying, ‘Hi. We’ve activated your match.'”
I’m sharing this because this one Reddit conversation changed my mind about becoming a bone marrow donor.
And in this case, changing someone’s mind could save someone’s life.