Don’s story of his MPN diagnosis began roughly twenty years ago in the spring of 2001 when he was hospitalized for stroke-like symptoms. It was discovered he had blood clots in his brain and was later diagnosed with polycythemia vera (PV). Or perhaps it began before that, in the mid-1990s when he joined the national bone marrow registry to help stem cell transplant patients. At the time, Don had no idea that he would be on the receiving end of a transplant some 20 years later.
For the 10 years following his diagnosis, Don had phlebotomies to treat his PV. By 2010 his diagnosis progressed to myelofibrosis and his medical team informed him that he would eventually need a stem cell transplant. Don was successfully treated with interferon for five years, and when it stopped being effective, he began a course of Jakafi. Jakafi worked at controlling Don’s spleen and counts for roughly five years, but when his spleen began to grow he knew the stem cell transplant couldn’t be put off much longer. By 2019 his doctors informed him within the next year or two he would need the transplant. Meanwhile, Don’s daughter Leah was planning to get married in the fall of 2020.
No one knew at the time how long the pandemic would wear on. Don’s daughter ended up postponing her wedding to the fall of 2021, and Don went through with his transplant in November of 2020 at Beth Israel Hospital in Boston.
Don spent four weeks in the hospital post-transplant and was able to go home the first night of Hanukkah. He was informed by his medical team throughout the process that he would most likely be hospitalized for routine complications after the transplant but, so far, he has successfully remained out of the hospital.
Don shared, “For the first 4-6 months post-transplant I was a little worried I would get GVHD bad, or an infection, but over the last few months, nothing has happened and my white counts are decent. I definitely feel a lot of that weight of what’s going to happen has been lifted.”
Don offers this advice for stem cell transplant candidates, “I found it helpful to talk with people who’ve been through the transplant because there are a lot of things you’re not going to think of, or questions you’ll want to ask. My doctor is great but he hasn’t gone through it. And be a little careful about crowdsourced advice.” While Don says myelofibrosis pages are great for emotional support, he warns that patients should be getting their medical advice from their medical team. He also encourages primary caregivers or spouses to connect with others who’ve cared for stem cell transplant patients.
At 59, Don decided to take an early retirement from his career as a patent attorney and has since been enjoying more time to read, golf, and learn new photography skills and photo editing. One of his favorite unexpected hobbies has been taking walks and hikes while catching up with friends. Don’s also grateful for the time he’s been able to spend with his grown children throughout his recovery.
In November of 2021, one year post-transplant, with the consent of his donor, Don will have the opportunity to meet the person who saved his life. Interestingly, this is something his son Ted has experienced. Don’s children felt compelled to join the bone marrow registry back in 2012 and, roughly four years later, Ted was selected to be a donor. “Knowing (at the time of his donation) that I would need a donor at some point made his gift especially nice. A bit of a ‘paying it forward’ moment,” Don says. Ted was recently informed he matched a second stem cell transplant candidate.
While Don quips the actual stem cell transplant itself was anticlimactic, having the opportunity to meet his donor someday surely won’t be.
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera, and Myelofibrosis. It does not represent the views or opinions of anyone associated with MPN Research Foundation. Please consult your doctor before taking any action to manage your health.