In June 2018, my Dad was diagnosed with refractory anemia with ring sideroblasts (RARS), a type of myelodysplastic syndrome (MDS). MDS-RARS constitutes about 3-11% of all myelodysplastic syndrome cases. For patients with RARS, red blood cells are unable to process the iron that is used for making hemoglobin, causing red cell dysfunction. Patients with RARS are at risk of the disease transforming into an acute leukemia. For a small number of patients, stem cell transplantation is the only current treatment that can produce long-term remission.
In the case of my Dad, blood and platelet transfusions and chemotherapy proved effective for a period of time. But eventually, the disease became unresponsive to treatment. Repeat bone marrow biopsies confirmed the disease had progressed. My Dad was presented with the option of a stem cell transplant. His age and cardiac history were a major concern, but he passed physical exam and full cardiac workup to qualify. The next step was finding a donor match.
After a global database search came up empty, my sisters and I were tested. I was selected as his donor. Transplant was scheduled for January 6, 2021.
With help from the Leukemia & Lymphoma Society, an AMAZING care team consisting of his Excela Health primary care physician, UPMC oncologists, cardiologists, pulmonologists, infectious disease physicians, fellows, residents, advanced practice providers, and more nurses and aides than I can count, medications, treatments and many generous blood donors, my Dad made it to and through transplant. From the date of diagnosis, he fought long and hard through severe fatigue, pneumonia, fluid overload, side effects from medications and treatments, multiple heart attacks, allergic reactions, infection, several cardiac procedures, an arterial bleed, physical pain, edema, shortness of breath and likely a million other things he never mentioned. The stem cell transplant was successful, but his body was tired.
In September 2021, he was hospitalized with a severe lung infection that never responded to treatment. He was put on a ventilator the afternoon of his 73rd birthday and passed away early the next morning. I am organizing an annual blood drive to pay it forward on his behalf and try and help others in need. For three years, my Dad relied on blood products. Without them, his life likely would have been cut much shorter. Please find time this month to donate blood in memory and honor of my Dad and support of patients who desperately need our help.