A Small Way of Doing Good During Covid
This past week I was given the opportunity to donate my stems cells to a patient in need. I found out I was a stem cell match 2 months prior, but I’ve been on the bone marrow registry for ten years.
Back in college, The South Asian Student Association hosted a bone marrow drive through SAMAR called “Swab for Bevin.” SAMAR is a partner of the official National Bone Marrow registry, BeTheMatch but SAMAR’s focus is to increase the number South Asian and other minorities on the registry. A person’s HLA- or tissue typing is inherited from your ancestry. This is why patients are more likely to match someone of the same ethnic ancestry but not necessarily with their genetic relatives. The current national registry over indexes with white donors and is in dire need to diversify. According to BeTheMatch, a white cancer patient is 77% likely to find a stem cell or bone marrow match while it’s 23% if the patient is Black and 41% if the patient is Asian.
In 2007, there was a large push to find a match for South Asian leukemia patient, Bevin Varughese. SAMAR held bone marrow drives in densely populated South Asian towns, community centers and colleges. In 2008 however, after not finding a match, Bevin passed away at the age of 28. The foundation Swab4Bevin lived on and was led by the family with the goal to continue registering South Asians to increase the chances of a match for any other South Asian cancer patients.
In March 2010, Baruch College being a densely populated South Asian student population, held a Swab4Bevin drive through SAMAR. In between classes I stopped by the table that had a SAMAR banner, learned about the cause, answered a questionnaire and swabbed my cheek with a large q tip. That was it, I was on the registry. Quick and painless.
After that, I forgot about this completely. Then in 2018 I received a call from BeTheMatch about being a preliminary match for a cancer patient. I answered a few questions and agreed to a blood test for further testing. After the test results were in, the patient’s treatment plan changed and was not in need of bone marrow. This is common. According to BeTheMatch, 1 in 40 people will be called for additional testing, 1 in 300 will be selected as a possible match for a patient and 1 in 430 will actually donate.
Fast forward two more years, I received a call in August 2020. I was told my stem cells were a match for a little girl in England. I was told about the patient’s age, her disease and was given confirmation that I was a match due to being from the same ethnic ancestry. I can assume the little girl is either of Indian or Pakistani descent. I’m not scared of needles or blood, as I’m a multiple blood donor and one time platelet donor, so I didn’t need to think twice.
The next two months involved lots of phone calls from BeTheMatch from my designated case manager, multiple blood tests and consent forms. Note, this whole procedure was at no cost to me, it’s 100% covered by BeTheMatch.
Because of Covid, the process was a little different. In a non covid era, a donor undergoes the stem cell procedure and a patient would be prepped to receive the stem cells almost immediately. But since the risk of covid is high, the donor stem cells are tested, frozen and first confirmed to be healthy and safe. Only after does a patient prep to receive them. The prep usually involves the patient going through multiple days of chemotherapy.
The prep for a donor donating stems cells gets a little bit more aggressive five days leading up to the donation date. Your body needs to be prepared to generate additional stem cells. To do that, I was given injections of a drug called filgrastim to increase the number of blood-forming cells (also called blood stem cells) in my bloodstream. On day one of the injection, I was given them by a nurse at the hospital as well as a covid test. Days 2–4 a home health nurse came to my home to administer the injections. Day five was given at the hospital before the donation. The side effects of the drug were minimal but different. I had the most common symptoms listed- hip pain, sternum pain and other bone and joint fatigue. It didn’t alter my day but just kept me from joining a Peloton challenge with my coworkers. I stayed home those days because I was tired but also because I was waiting for a negative covid result as per Stony Brook Hospital policy.
The actual stem cell donation process is similar to a platelet donation. In almost all cases a donor is sitting comfortably in a stretcher or bed with a needle in each arm. On one side, blood is taken out and run through a machine that separates stem cells from whole blood. This process is called apheresis. After the separation, the blood is put back through a needle in your other arm. This process can take up to 8 hours. During this time you can sleep, read, eat or watch television to pass time. Beyond the stick of the needle, this is a painless process.
In one of the pre-donation health assessments, I was told the veins in my arms weren’t thick enough and that if I wanted to move forward with the stem cell donation, I’d have to consider donating from a thicker vein underneath my collar bone and above my heart. This is called a central line placement or a catheter. This scenario is rare, and I guess it was my luck of the draw. Again, I’m not scared of needles and I was told that donating from a thicker vein in my neck would make the process go quicker (less than 8 hours) and both of my arms would be free from needles and tubes.
My donation was set for October 20th at Stony Brook Hospital. On that day, I had to report to Stony Brook Hospital at 6:30am because I needed the central line placement done first by a surgeon. It took less than 15 minutes to place and it looked a lot worse than it actually was. After that was done, I was sent to the blood center ready for the donation. I started the apheresis process around 9:45am and was done by 2:30pm. It was a faster process because of the central line but also because my patient was young and needed less stem cells. I passed the time by taking a mandatory training for work while sipping coffee.
After the donation, all of my side effects from the filgrastim injections disappeared. Then the central line needle was pulled out of my neck. I drove myself home and rested the rest of the day. For the days that followed, I had some pain at the central line placement site in my neck but after 5 days, I was back to 100% range of motion.
Once the patient receives my stem cells, I’ll be told minimal details about how the treatment is going. I will not be put into contact with the patient till at least one year post donation. If the opportunity comes again, I’d donate again in a heartbeat. I consider what I’ve done a true fortunate opportunity. This year, the world has seen so much unnecessary and preventable death due to Covid-19. And with the focus on covid, other diseases and life saving procedures have been delayed. I feel so lucky I could have helped possibly save one persons life, when there is so much death around me in The United States. Programs like these give me hope. I would like to thank BeTheMatch, SAMAR and Swab4Bevin for giving me the opportunity to donate to this little girl in need.
Since the onset of the coronavirus pandemic, all in person bone marrow swab drives have been put on hold. These drives amount to adding hundreds of thousands new registrants each year. Until further notice you can only be put on the registry by registering online and swabbing your cheek with a mail home kit. It is imperative more people register on the national list as people age out as potential donors each year.
As a Call to Action for all of my South Asian people, please consider registering. Cancer doesn’t discriminate based on ethnicity, but finding a treatment is unequally balanced for all minorities. BeTheMatch made the whole process easy to understand and any pain was fully worth the benefit of saving someone’s life.
