Please allow me to share with you the story of my journey and why I have two heroes.
In 1999, while working in corporate America as a research product development scientist, I began to experience symptoms of extreme fatigue and easy bruising. Almost two years and eight doctors later, I was diagnosed with Paroxysmal Nocturnal Hemoglobinuria (PHN). After battling the disease for approximately nine-and-a-half years, my doctor told me that my only chance for survival was to have a bone marrow transplant. Because I did not have a family member who was a match, I had only a 35 percent success rate for survival if a matched unrelated donor (MUD) was found. A gentleman in Germany was found as a MUD, and I decided to take a chance with the 35 percent success rate rather than to accept a zero percent chance of living. On September 11, 2008, I had a successful bone marrow transplant. I was alive because someone who did not know me was willing to help a stranger. He became my hero. Two years after my transplant, I learned the identity of my donor, and we have communicated frequently.
In 2018, while working in my second career as a hospice chaplain, I began planning a trip to Germany for the ten-year anniversary of my transplant. I had not yet met my donor in person, and this trip would be my opportunity to meet him personally. At the time I was planning the trip, I again began to experience symptoms of extreme fatigue and easy bruising. I attributed my fatigue to extra-long hours at work because a co-worker had quit without notice, and I had taken on his patient load. I attributed my bruising to yard work projects. After coming to the realization that my symptoms were rapidly becoming worse, I contacted my doctor. Two months later, I was diagnosed with Myelodysplastic Syndromes (MDS). I immediately started chemotherapy and approximately six months later entered the hospital for a second bone marrow transplant. A matched unrelated donor was found in England. On January 9, 2019, I received my new marrow from this donor – a gentleman from England. It was on this date that I received the gift of yet another hero. After two years, I have learned the identity of my second donor.
Since my two transplants, I am in contact with both of my hero donors. As soon as the COVID restrictions are lifted, I will plan a trip to Europe to visit both of my heroes. Be The Match is the organization that found both of these donors. For my first transplant, a courier had to pick up my hero’s marrow in Germany and fly it to me while I was in the hospital at the Ronald Reagan UCLA Medical Center. For my second transplant, a courier brought my hero’s marrow from England to me again at the Ronald Reagan UCLA Medical Center. Recently, I joined Be The Match as a volunteer bone marrow currier. This opportunity allows me to give back to the organization that found both of my match unrelated donors and to help other patients receive the second chance at life that I was given – twice. Also, I am planning a donor drive at my church after the COVID restrictions are lifted.
I believe that I am blessed to have these two true heroes in my life. I hope to soon meet them both in person.