Why I Am a Bone Marrow Donor and the Journey I’ll Never Forget
It was 17 years ago that ESSENCE.com Executive Editor Abby West decided to register as a bone-marrow donor. This summer she got a call to possibly save a life.
The day could not have been more ordinary. I’d just settled into my seat for the train ride home on a Thursday this June and pulled out my phone to check e-mails and scroll my social feeds. Before I got far I saw an e-mail title that took my breath away. Subject line: “Be The Match Registry Important Message ” First line: “You’ve been identified as a possible marrow match for a 50-year-old male in need of a transplant.”
I couldn’t believe it. It had been 17 years since I had registered with the National Marrow Donor Program and I never thought this day would come. I’d joined the registry while working at the Stamford Advocate newspaper in Connecticut and covering a donor drive for an African-American man in town. I’d only become aware of the need for bone marrow donors because of a dynamic young Advocate reporter by the name of Shannon Cross, who had died of sickle cell anemia the previous year. I didn’t know her but she’d left a lasting impact on the staff and community. The whole point of the drive was to get more African-Americans onto the registry so we would have more possible matches for those in need, something Shannon didn’t have. Seven out of 10 patients do not have a matching donor in their family and a match must be found among the registry. A bone marrow, stem cell or cord blood transplant may be the best treatment option or the only potential for a cure for patients with leukemia, lymphoma, sickle cell anemia and many other illnesses.
The moment I opened that e-mail, I knew I would go through with it. I am a journalist and raising my two teenagers on my own, so of course there would be a laundry list of questions I’d need answered first. But I knew enough about myself to know that if there was a chance I could save someone’s life and it had minimal and manageable risk to my own, I would absolutely choose to do it. And because I believed that many people, if not most, would feel the same way, I decided to share my journey on social media. I started that evening, when I posted my first Facebook update about it, documenting my tingly excitement. I had no sense of the time frame for this process. This seemed urgent, and while I was willing to do whatever it took I was bound for ESSENCE Festival in New Orleans in two weeks and feared this would become complicated.
But for the safety of the donor and the patient, the process is far more methodical than I thought. My wonderful Be The Match liaison laid it all out for me. There would be about seven weeks of blood testing and prep before I donated, none of it at any cost to me. Within a week of being notified I went in for the initial round of blood testing to determine if I were indeed a healthy, viable match. That confirmation came while I was in New Orleans—and the day before GMA anchor Robin Roberts and her sister-turned-donor Sally-Ann were set to speak at the Festival. I saw this all as part of a divine plan. I felt compelled to share my story with Robin when I saw her backstage. She lit up and called her sister over. The two of them enveloped me with their warmth and passion for this donor program. Sally-Ann shared some practical advice on being a donor, including, “Remember the Five P’s: Pray, Prepare, Proceed, Persevere and Praise Him!” Their faith shined through, and if I wasn’t resolved before I certainly was then.
For the next four weeks, there’d be more blood tests and an extensive physical scheduled around my work hours. By the end of it I had the cleanest bill of health I can ever remember getting. We decided I would do the nonsurgical donation procedure, and we set the date for my peripheral blood stem cell (PBSC) harvest: August 7. Four days out I would have to start Neupogen shots to stimulate stem cell growth in my blood. At the same time the recipient started a round of chemotherapy to prepare his body for the new stem cells. Those in the program make it clear that you can change your mind about donating at any point—it’s your body—but they simply ask that you do it before the recipient has begun chemo. Beyond fair.
I took my 13-year-old daughter with me for that first injection. I’d told my kids about it from the beginning. While they both expressed concern for my health during the process, they were excited I was doing it. I’d later noticed some reticence from my daughter and thought I’d involve her in the process. She held my hand for a bit and then took pictures of me getting my shots, which I posted on Instagram, because that’s how we bond these days.
I knew to expect aches and pains due to the shots but was very surprised by just how much it ached by the first night. It was flu-level aches that had me up the first night trying to get comfortable. But I started a regimen of pain relievers to help manage those feelings. The NDMP had a visiting nurse come to my office for the next three days to administer the daily injections of Neupogen. My clinical nurse manager, Allison Herriott, was an African-American woman who was pleasantly surprised to see me as the donor. Having worked a lot with the donor program, she could attest to the disparity in numbers of African-Americans being matched up on the registry. Her professionalism and encouragement to make it through the few days of discomfort went a really long way.
Because the donation would begin early in the morning, the program put a friend and me up at a hotel near the donation center. My dear friend Ansley accompanied me. We went out for dinner the night before my procedure and retired before it got late so we could be at the center bright and early. We were so eager we were actually there before anyone else, besides the security guard. Within minutes we met my apheresis nurse, Edward Pszeniczny, who took me through this day with a calm authority and eased all my discomfort.
The procedure itself involves having a rigid needle in one arm drawing blood into a machine, where it is spun, separating the components and extracting the stem cells. The remaining blood is then returned to your body, with extra fluids, via a needle in the other arm. The whole procedure took about five to six hours. I’d have stayed reclined for the duration but my bladder had other ideas. Ed disconnected and reconnected me twice for bathroom breaks, with the needles still in my arms. It was often uncomfortable and sometimes slightly painful. And the closer to the end I got, the more I was ready for it to stop. Even in the midst of the physical unease, there was immeasurable comfort in knowing not only would it end but it was for such a grand purpose.
When it was done, they discharged me and sent me home in a car to rest. I was achy until the next day, and feeling wiped-out for the next two days. By day three I was fine. It took only six days of discomfort to provide the chance for someone to live out a longer, fuller life.
So now I wait. I am so anxious to know how the recipient is doing. But that won’t be for a month from the start of his transplant, which began the day after my donation. I can receive periodic anonymous updates on his progress over the next year. At that point, if we both want to find out the other’s identity we can.
Of course I want the full story: to meet him and paint a complete picture of who he is, his family and his triumph over his illness. But I know that it really doesn’t matter if I ever know. What matters is that he has this shot. And that I was blessed to participate in this human experience to preserve a life and feel reaffirmed in life, love and humanity.
Abby West is the executive editor of Essence.com and mother of two teens. Follow her on Twitter @AbbyWestNYC