Did you know? World Marrow Donor Day is September 21st, 2024, and celebrates those that say “yes” to joining the National Marrow Donor Program (NMDP) Registry, to donating blood stem cells, and raising funds and awareness of the program.
NCAPA had the honor of speaking with a marrow donor, close to home and close to the organization, with none other than Caroline Purdy, NCAPA Membership Services Manager. Caroline has been with the NCAPA for over five years, and actually joined the NMDP Registry by happenstance while at the NCAPA.
A Chance Sign-Up
“The most interesting thing about signing up to be on the registry is that I signed up, because of NCAPA. It was my first few weeks at the organization, and I accompanied Emily Adams, CEO, to a NC MedAssist Luncheon. At this luncheon, there happened to be a representative there from the NMPD, which was “Be the Match” at the time. When I went home, I immediately went to register online.”
Initially, Caroline was told that matches occur very rarely. “To match, you have to be a really close genetic match. However, they emphasized that, regardless of this, simply registering and adding to the database expands the likelihood of additional research and additional matches being added every day,” she said.
A Near Identical Match
A few years and months went by, and Caroline had thought nothing about joining the registry since then. Until, early fall of 2023, Caroline had not only received an email, but also a text message and a phone call – all at the same time.
“That’s when I knew this was potentially something very serious,” she said. “And it was a coordinator from the NMDP saying that I had been a match for a recipient and that we needed to move fast.”
From going years without matching, to now being identified as a possible donor to a recipient with a terminal illness, Caroline was overwhelmed with the swift support and coordination from the National Marrow Donor Program.
“To say I was shocked was an understatement. I never had any family who were recipients or went through a process like this, so this was incredible.” Caroline went through multiple phases of comprehensive questionnaires, primary and secondary blood testing, infectious disease tests, and more. “It came back that I was not only a match, but I was also considered to be an ideal match, which means I was a near identical match.”
Caroline was not only the primary donor – she was the sole donor. “Typically, in these cases, you have a backup donor. In my scenario, there was not a backup match that was a close enough match to the recipient, aside from myself. Once your recipient starts the process of essentially removing their original copy of their immune system and a donor backs out, the results can be fatal. So, I had to ensure my understanding of that, and the NMDP did a great job in preparing me for that reality with their counseling and guidance.”
“Essentially, I knew that recipients of this program could be acutely and even terminally ill. There may be a substantial chance that they will pass during or after this whole donation process. I was assessed whether or not I was emotionally equipped to handle that potential outcome as well.”
A Life-Saving Donation
There are two donation pathways to donate within the National Marrow Donor Program. One pathway is to donate bone marrow, while the other pathway that Caroline went through was the donation of peripheral blood stem cells (PBSC).
In preparation for the transplant, Caroline went through five days of Filgrastim injections through her abdomen. Filgrastim injections cause the body to hyperproduce stem cells. “You are essentially duplicating and removing your own immune system to donate it to your recipient,” she said.
The NMPD has donation centers all over the country. When it was time for the transplant to occur, Caroline and her husband, Tim, traveled to Washington D.C. to the Georgetown University Hospital. “It was similar to a blood or plasma donation center,” Caroline told the NCAPA. “At the end of the process, your immune system essentially is handed to you in a bag, and I remember it being such a strange sensation of holding my own immune system of stem cells. It was so cool.”
Caroline was labeled a “hyperproducer,” capable of producing a large amount of PBSCs. “That’s why the color of my donation is red-orange!”
A Christmas Gift
The transplant ended up being successful.
Caroline shared the news of recently being notified that her recipient had an incredible outcome. “My recipient was told before matching, that this past Christmas may have been her last Christmas. Today, she is alive to see her next holiday season, nearly a year after I donated.”
On reflecting on the entire journey, Caroline smiled. “The entire process was slightly uncomfortable, but this is what got me through: I was undergoing these injections and treatment while I was in the best picture of health in my adult life. Recipients and those in need of donations are also taking Filgrastim injections, while at the same time undergoing cancer treatments. So, the week of discomfort that I had was nothing compared to what my recipient was going through, while also undergoing chemotherapy. That perspective truly kept me going through, just thinking of what my recipient was going through at the same time.”
Caroline credits her journey to the support of her family, friends, and NCAPA family. “In those times when I felt scared or in pain, I reflected on the support that I was surrounded with and that support definitely got me through.”
“If I could summarize it in one word?” Caroline repeated the NCAPA’s last question. “Blessing – but not in the way you might think. The donor is blessed just as much as the recipient, and it has been the best thing I have ever done in my life. I continue to feel incredible lucky to have done something like this in my lifetime.”
