It’s in genetic counselors’ DNA to guide and support individuals through tough times or scary information. So, when bad news struck the NSGC community in the spring of 2018, our members wanted to quickly take action.
MaryAnn Campion, former 2019 president-elect, was diagnosed with leukemia and in need of a bone marrow transplant. She didn’t have a match within her family. As soon as NSGC publicly shared the news, we received many questions about you could help. We drove members to the Be The Match Registry® operated by the National Marrow Donor Program®, an organization we partnered with previously in memory of SmithBucklin employee Kathryn Whitmer.
Like MaryAnn, 70% of all patients who need a transplant don’t have a fully matched donor within their family. A patient’s likelihood of finding a matching donor on the Be The Match Registry is estimated to range from 19-80%, depending on ethnic background.
We’re grateful for those in our deeply caring community who signed up to yield even more donors. It’s a potentially life-saving experience as well as a meaningful one, as NSGC member Kayla Young has learned. After joining a bone marrow registry, Kayla was called upon because someone needed her marrow for a chance at more years to spend time with family, go on adventures and enjoy life.
Keep reading for a Q&A with Kayla about her experience as a bone marrow donor.
Why did you get involved with Be The Match Registry®?
I worked at a cancer center that held a bone marrow donation registry drive, and I volunteered to run the booth for a portion of the day. During the training for the drive, I learned a lot about the process of bone marrow donation and decided to submit a sample for the registry. I completed my simple cheek swab, sent it off, and didn’t think too much more about it after that.
One day about a year and a half later, I received a call from a representative of the team saying I was a preliminary match for a person diagnosed with myelodysplastic syndromes (MDS).
What has your experience been and what has it involved?
The process was several steps, but all were pretty simple! Once I was identified as a preliminary match, I completed a more extensive blood test to confirm I was an appropriate donor for the patient.
I moved to the next step in the process – traveling to a hospital with a transplant program for more testing. I completed this process at George Washington University Hospital, which is also were I would end up doing my donation. I met with another representative for the transplant program and signed several consent forms. I did a quick pulmonary X-ray and EKG to confirm I was in good enough health to donate. I also had a quick meeting with a nurse practitioner, where we talked about my personal and family history and she did an easy physical exam. For this step, I flew into DC for the night before and flew home right after the appointment was complete.
From there, we commenced with the actual process of donation. I was requested to donate peripheral blood stem cells. For several days before the donation, I was given shots to help stimulate production of white blood cells. The organization coordinated a home health nurse to come to my work, so I didn’t even have to take time out of my day to complete this! The shots stung a little bit, but overall weren’t too bad. I did experience some minor bone pain (especially in my back and pelvis) from the bone marrow stimulation, but I was advised to take Benadryl to help with the pain and that did the trick.
The day of the donation was pretty ordinary. The organization covered all expenses so I had flown into DC the night before and woke up early to head to the hospital. There, my right arm was hooked up to something similar to an IV, and the donation began! My recipient’s doctor had requested a larger dose of stem cells, so I wound up being there for about eight hours. I napped, watched TV, chatted with the nurses and played Candy Crush. The organization also paid for a companion to attend, so my mom was able to join me.
After eight hours, I was all done! I felt totally normal, except for perhaps being a bit tired. I flew home the next morning, and was back to work the very next day.
Have you learned anything surprising through the process?
I had always thought of bone marrow donation as a painful, surgical process – I was surprised to know the majority of donors provide peripheral blood stem cells, and no surgery is involved.
I was also surprised about how little effort it took to potentially save someone’s life. When adding up all the time spent in the donation process, it probably took less than a week of my life – but for my recipient, who I am friends with on Facebook, it means many more years of spending time with family, going on adventures, and enjoying life.
What would you say to someone considering joining the program?
Donating stem cells was one of the most meaningful experiences I have had in my life. For many people, transplantation is one of the last steps in a treatment journey, so they are waiting by the phone to hear a match has been found. Whatever negligible amount of inconvenience I put into donation, it is wholeheartedly overshadowed by the joy I feel getting to see my recipient enjoy her life with family and friends. From start to finish, everyone I interacted with through the process was kind, helpful, and a pleasure to work with.
If you’re interested in joining the Be The Match Registry® or learning more about the process, visit join.bethematch.org/NSGC.