It was 3:00 a.m. and my family and I had just returned from our New Year’s Eve Midnight Mass. Right before going to bed, I checked my email. That’s when I saw the message identifying me as a potential match for a patient. I told my wife Sarah and we were both in disbelief.
Every single person associated with the Be The Match Registry dreams of receiving the message that they are a match. I began my association with Be The Match as a volunteer through the South Asian Marrow Association of Recruiters (SAMAR) in 2007. My good friend Bevin was diagnosed with acute lymphoblastic leukemia (ALL) a few years before and after relapsing, all his friends rallied together to conduct registry drives all over the country. Unfortunately, Bevin passed away in 2008, but I stayed with SAMAR as the Secondary Medical Director and then eventually as a full-time Medical Coordinator and Recruiter.
It was Bevin I thought of initially. Then I thought of my two friends Shaun and Anila who had suffered similar illnesses. With the complete support of my wife, there was absolutely no hesitation from my end and within five minutes, I responded. I tried my best to contain my excitement, especially since I knew exactly what the odds were of being able to donate. I was thrilled that 2014 had begun in such a great way.
In a couple of days, I received the call with the same information I had so often provided to many donors over the past seven years. It was definitely a surreal experience being on the other end of the conversation. I completed the Health History Questionnaire, sent back my Consent Forms and scheduled my blood work. The blood work was quick and easy. I was out of the lab within 20 minutes.
I informed Mr. and Mrs. Khan, the founders of SAMAR, about the situation. They were both ecstatic for me. One of their own employees who spends his days working on behalf of patients now had the opportunity to potentially save a life.
Almost two months later, I was informed that I was an acceptable match and could proceed. The wonderful staff at the New York Blood Center sent me the official documents to review, sign and mail back, and scheduled my physical exam, which consisted of more blood work and a chest x-ray. A preliminary date was scheduled for my first shot of Filgrastim and the subsequent donation. It was then that I told my parents and in-laws about the match. I was blessed that my wife and family were extremely supportive of the donation.
Unfortunately, some further follow up blood work was needed, which delayed the donation process by almost two weeks. That was in-a-way good because it allowed me to see the other side of things. We often forget how fragile the process is and although it may seem like simple issues, they can cause delays that are frustrating on many levels.
Day 1—First day of Filgrastim injections. I left work in the middle of the day and headed to the NYBC for my shots. I was very curious to experience the “pain of the injections” that is often mentioned when recruiting new registry members. To me, the pain was a non-issue. It was less pain than a flu shot. I went back to work and continued my day. I was a little fatigued, but that was it.
Day 2— That Saturday, my mother, a retired registered nurse agreed to give me my injections for days two and four. My only “side effect” that day was fatigue.
Day 3— First day of initial bone pain. I kept in mind what we tell our donors. “Pain is good because you know the Filgrastim is working.” I was at church and noticed that I couldn’t sit in any position without discomfort. I took the pain medicine before it got worse. I received my third dose of Filgrastim and took the pain medicine as needed throughout the day. That night I started feeling more pain in my hips and lower back but slept extremely well.
Day 4—Definitely the day I felt the most pain. I felt it in my hips, lower back, and tailbone. A few times I felt it in my sternum and ribs as well. The pain was bearable and never prolonged. I went into work, but since I could not sit in one place for a prolonged period of time, I took a half day. I went home and decided to stay in bed since that alleviated the pain. I received my fourth dose of the Filgrastim.
Donation Day— I slept very well the night before. Sarah accompanied me to the NYBC and I received my final injections of the Filgrastim. We enjoyed a nice breakfast and after an hour, it was finally time to begin. The donation process began and there was no pain at all. Whenever I felt my calcium levels drop, I let the nurse know and he supplemented me with some calcium. I received a nice visit from Mr. and Mrs. Khan along with our staff member Pooja Shah. They were so happy and supportive of me and mentioned how this must be a rarity for a recruiter to donate. The process took five-and-a-half hours. Sitting in one place for that long was probably tougher than any of the injections or the process itself. My wife and I watched a movie on our tablet and the NYBC staff made sure to keep me entertained. After the necessary amount of product was collected, I was ready to go home. That evening, I just relaxed at home with my family. I had some pain still, but the meds alleviated any discomfort.
Day 1 after the donation— I had been given the day off so I could stay home to recover from any residual effects. I still had some slight pain, but again it wasn’t anything overbearing.
Day 2 after the donation— I felt 95 percent and was back at work. I did not have to take any pain meds and went about my day as I would normally.
Day 3 after the donation—I had a scheduled day off and was 100 percent recovered. My only restriction was a recommendation to not do any physical or strenuous activity for two weeks after donation.
I can honestly say this was one of the greatest experiences in my life. There was a certain level of discomfort, but whenever I felt any pain, I simply thought about the recipient. I kept thinking about one specific moment in the recipient’s life; the moment he/she was informed of the diagnosis. I kept telling myself if the recipient was able to cope and deal with that particular moment, the slight discomfort I am experiencing is nothing.
I hope to meet the recipient one day, but if it doesn’t work out I’ll always know that I have a “sibling” in the world that fought hard till a match was found. I am proud the recipient never gave up hope and allowed me the opportunity to help and experience the full circle.
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