I’ve gotten a lot of questions of what the bone marrow donation experience was like, and because I want to encourage everyone to join the registry as immediately as possible, here’s a little run down of what you can expect if you ever get the call.
Let’s start from the beginning.
I became a part of the bone marrow registry through the Be The Match foundation (
http://www.marrow.org/). Much like the Leukemia Lymphoma Society (LLS) and Team in Training (TNT) work together to fund blood cancer research, education and patient services, the Be The Match foundation and the National Marrow Donor Program (NMDP) work together to match strangers for marrow and umbilical cord blood transplants. Their registry currently has more than 8 million donors and it’s growing every day, which is good because 75% of folks who need transplants have to look outside of their immediate families for a match.
To be clear, I did not just look up this organization and decide that I wanted to give someone my bone marrow. That would be cool and all, but it is simply not the case. I joined TNT in 2008 because I wanted to do a triathlon and meet new people. I loved the fact that the organization supported a good cause, but I had no connection to cancer and my real motivation was unrelated to what my connection to TNT has grown to be today.
Back in the spring of 2008 during my first season with the triathlon team, I showed up to one of MANY social events hosted by TNT and it turned out that the NMDP was there taking cheek swabs. A bone marrow match is a match that is way more complicated than simply matching blood types. It’s tissue matching, so when they swab your cheek, they’re able to get the cells they need to forever have your tissue information. Your cells don’t change. The only thing that changes is your contact information, so if you are on the registry and you’ve changed your phone number or email address, call them up or go online and give them an update.
I have been involved with TNT ever since and have just kicked off my fifth season with the triathlon team. I’m on staff and we’re going to Hawaii to race Lavaman in April. It’s going to be awesome! So, needless to say, when I got the call on August 5, 2010 in the middle of the day while I was at work, I was a little shocked, but up for the challenge.
The call was pretty straightforward. A woman told me that I was a potential match for someone with AML whose case was considered “urgent” and wanted to know if I was still interested in heading down the path of donation. I instantly said yes, because whether or not I really understood what was going on at that point, I already knew in my heart that I was going to do this.
Not 48 hours later I was at a blood bank giving eight vials of blood. That is the first part of the process and it is called Confirmatory Testing. Basically, the cheek swab is just a surface level match. It gives enough information to cast a wide net over the registry and hopefully bring back some options, but isn’t enough to match individuals to the degree that is needed to determine a match. There are about eight (more or less) markers in your blood that have to match up between the donor and the recipient, and it has absolutely nothing to do with blood type. In fact, my lady will forever have my blood type once the transplant is complete. How crazy is that?!
All you can know about your recipient is their gender, age and diagnosis. You won’t get updates on their health status, you will have no idea where in the world they are, you won’t have contact at all. After a year, if you both want to contact each other, you can coordinate through the transplant center/Be The Match. But until then, the details for both people are limited.
So, the testing and matching period started in August and about a month later, I found out that our tissues matched and I was going to be able to be her donor. We started scheduling and coordinating dates for the next steps so that we could do the “harvest” as soon as possible. That sounds so Hannibal Lecter but “harvest” is what they call it…
I should just take this opportunity to say that my contact at Be The Match is amazing. Her name is Irma. She was there with me every step of the way - for all the appointments and all the scheduling and coordinating with the hospitals. I was so blessed to have her as my person, because I had never had to talk the medical language before. She navigated our way through all the hospital red tape and made sure I had a voice. It gave me huge perspective on what it would be like not to have an advocate when you don’t know enough to be an effective advocate for yourself.
Another thing you should know is that as a donor, all expenses will be covered. Be The Match ensures that you don’t spend a dime so that there are no financial barriers to consider when making a decision about whether or not to donate.
Irma and I worked with UCSF and Stanford to try to decide where to do the procedure. I spoke with doctors at both hospitals and ultimately decided to go with Stanford. I felt lucky to have two amazing options for my medical care. I went for a day-long physical exam at the end of September, which included blood tests, urine tests, checking vitals, an EKG, a chest XRay and a meeting with the oncologist to talk through the consent forms and the procedure.
Up to this point, everyone had been prepping me for the PBSC procedure, which is a non-surgical procedure similar to donating platelets. Basically, you are given a drug called Filgrastim for five days prior to the harvest. It’s a synthetic drug that boosts your blood cell production so that you have a ton of stem cells floating around in your blood stream. After five days of injections, you sit for 4-6 hours a day for up to two days while they take blood out of one arm, send it through a separator to harvest the stem cells and pump it back into the other arm.
The more I read about the procedure, the less comfortable I was. Not because it doesn’t work, but because it is a fairly new procedure (10+ years) and the research is minimal. Knowing that I eventually want to get married and have a family, I simply did not feel comfortable committing to something with uncertain long-term effects. I decided that I definitely wanted to donate what I could, but that if there was a way for it to happen without pumping my body full of drugs with unknown side-effects, then I would rather do that.
This is the first time I’ve ever had to make a decision as an adult about being a part of medical research. I spend most of my free time and disposable income working with an organization to raise funds for cancer research. So asking myself the question of whether or not I’d agree to be part of something where the research is still being written was an interesting internal debate to say the least. At the end of the day, I asked to have the bone marrow surgery instead of the PBSC harvest.
The surgery is where they go in and drill/puncture four small holes into your pelvis bone on your lower back. They take a hollow needle and suction out however much bone marrow they need for your recipient based on their diagnosis and their height/weight. A donor can give up to 1.5 liters at a time without causing harm. I ended up giving 1.2 liters.
We began to prep for the surgery to take place on October 6, 2010. A few days into the prep, I got a call from Irma telling me that my lady was having health issues and that the transplant center was not confident that her body could handle the procedure. So, we were put on hold and I was able to run my first half marathon in Healdsburg. It marked the beginning of my Ironman training.
At the end of October, I got another call from Irma saying that my lady was healthy and ready to prep for surgery. We coordinated with the hospitals and put November 15, 2010 on the calendar for the surgery. The week prior, I had to go back into the blood bank to give a unit of blood that would be given back to me during my surgery. Having blood transfusions from any source besides your own body is considered a risk and they try to keep all elective surgeries as risk free as possible. I also had to go to a separate blood bank to repeat my infectious disease tests, as you have to repeat those tests every 15 days.
After that, I had a day of pre-op at Stanford. They drew more blood to check my blood count and I met with the oncologists and anesthesiologists to discuss the procedure. The biggest risk of the surgical donation is the anesthesia. Since I had never had anesthesia before, they weren’t sure how I’d react and there is always a risk of death associated with general anesthesia. They told me I could ask for local or regional anesthesia instead, but that I would be more aware of what was going on during the procedure. On the actual day of the surgery, I wasn’t even given the option, which was 150% fine with me. I wanted to be out.
The day of the surgery came and went. I arrived at Stanford at 6:30am. I was in surgery in no time. I woke up and was in recovery until they could find me a room, which was about 4:30pm. I was admitted into the hospital and stayed overnight. Everyone was absolutely amazing, especially my brother, Ted, and my dear friend, Anthea, who were waiting for me all day. My sister-in-law, Mai, brought us dinner and cookies from her niece, Sophie. I was reminded yet again how important family really is.
So, what happens now? As I was getting prepped for the surgery, my doctor came in to say hello and was holding a cooler, which I’m guessing was for marrow transportation purposes. Bone marrow is only good for three days after the harvest, so by now, my lady’s procedure has been completed. And now we wait…
My eyes have been opened to the world of advances in medical technology and my perspective has changed to be that of a patient rather than a visitor. Until now, I have never had to deal with anything in the medical world beyond some minor things here and there, and I cannot tell you what it means not to have to do this on your own.
Thanksgiving is next week and I have so much to be thankful for.
I’m thankful for my support system and the fact that I didn’t have to do any of this on my own. I’m thankful that my entire family is coming to town next week for Thanksgiving and that I will be able to celebrate the fact that this surgery was a success with people I love. I will be thinking of my lady every day and hoping that she, too, is surrounded by support as her battle begins. I only hope that my bone marrow provides her with the tools she needs to get better and that she is spending this holiday season with her family finding something hopeful to be thankful for.
Please keep her in your thoughts and prayers. Happy Thanksgiving.
