Don

Don’s journey with myeloproliferative neoplasms (MPNs) began in spring 2001 when a sudden hospitalization for stroke-like symptoms revealed blood clots in his brain. He was later diagnosed with polycythemia vera (PV). However, his connection to stem cell transplants started even earlier when he joined the national bone marrow registry in the mid-1990s to help others. At the time, Don never would have imagined that nearly 2 decades later, he would one day be on the receiving end of a transplant himself.

For the next 10 years, Don managed his PV with phlebotomies. By 2010, his disease progressed to myelofibrosis (MF), a prognosis that would eventually require a stem cell transplant. His medical team began preparing him for that possibility. Interferon helped stabilize his condition for 5 years, until its effectiveness waned. He then transitioned to Jakafi, which kept his spleen and blood counts in check for another 5 years. However, by 2019 his doctors informed him that the stem cell transplant could no longer wait. At the same time, Don’s daughter, Leah was planning her wedding — a milestone that added both joy and urgency to Don’s journey.  

When the pandemic hit, no one could have predicted how long it would last. For Don’s family, it meant postponing his daughter’s wedding for a year and helping Don prepare for his own life-changing event. In November 2020, at Beth Israel Hospital in Boston, he underwent a stem cell transplant. 

Don spent 4 weeks in the hospital recovering post-transplant and was able to go home the first night of Hanukkah. Although his medical team warned him to expect routine complications and possible rehospitalization, Don defied the odds.  

He shared, “For the first 4-6 months post-transplant I was a little worried I would get GVHD [Graft versus host disease] bad, or an infection, but over the last few months, nothing has happened, and my white counts are decent. I definitely feel that a lot of the weight of what’s going to happen has lifted.” 

He has remained healthy and out of the hospital since, a testament to both his resilience and the care he received. He was able to not only attend his daughter Leah’s wedding, but also his other daughter Deborah’s wedding a few months later. 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. He has become a grandfather to sweet Myles and has taken up pickleball. 

“Overall, I’ve had a very good life since the transplant and I feel extremely lucky. My doctor (Matt Weinstock) and the entire staff at the Beth Israel Hospital in Boston were and continue to be fantastic.” 

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 MF webpages are great for emotional support, he warns that patients should be getting their medical advice from their doctors and specialists. He also encourages primary caregivers or spouses to connect with others who’ve cared for stem cell transplant patients.  

Don’s journey is more than a story of survival — it’s a reflection of what it means to live with purpose, humility, and heart. From his early decision to help others through the bone marrow registry to his own experience as a transplant recipient, Don has come full circle. His advice to patients and caregivers alike speaks to the power of connection, preparation, and trust in the medical team. Through it all, Don has embraced life’s milestones with gratitude and grace, reminding us that resilience isn’t just about enduring — it’s about growing, giving back, and cherishing every moment along the way.