“I experience more joy since my transplant, and have a second chance that many others don’t get. I’ve worked hard on my recovery and gained back my strength. In many respects, I feel better than I have in years. It’s a life-changing, but also a life-giving procedure, so I feel very blessed."
Back in the Saddle
Heidi Cascarano’s diagnosis of polycythemia vera in 2008, at 40 years old, coincided with the week she lost her health insurance. At the time Heidi was considered a watch and wait category, but for the next four years felt terrible. She eventually did her own research and read about the signs of progression, even though her doctors told her everything was fine. Yet Heidi couldn’t ignore the fact that things were changing, for the worse. She was increasingly out of breath, appeared to have muscle wasting, and noticed an ever-growing spleen. Heidi wanted a bone marrow biopsy and was told she didn’t need one. She also wanted to know if Pegasys was an option as well, but was told insurance wouldn't cover it, and the side effects would be worse than her symptoms. By 2012 Heidi decided to meet with an MPN specialist and learned that her gut feeling was correct, something more was going on, she was progressing to Myelofibrosis, rather quickly, in fact.
Today Heidi will tell anyone who will listen, “Get yourself to a real MPN expert. Someone on the cutting edge of research at a major hospital. They can work with your local doctor to guide your treatment decisions. They are also much more capable in processing appeals when your request for a special medication gets denied, as it almost always does.”
It wasn’t long after Heidi progressed to MF that something else was happening too. By 2017 Heidi had another rare mutation that indicated Myelodysplastic Syndrome and knew she would need a stem cell transplant before long. At the end of 2018, Heidi requested a third bone marrow biopsy and it was discovered she had a third chromosomal mutation and would need a stem cell transplant. Heidi was fortunate that her brother Carl was a 7/10 match for her, and at 50 years old she underwent a haploidentical transplant, roughly ten years after her diagnosis of Polycythemia Vera.
Life post-transplant has had its share of challenges, but Heidi was extremely grateful that four weeks post-transplant she had 100% engraftment and complications she could handle. (Heidi suffers from mild GVHD, the worst of it in her eyes.) “I give some credit to the fact that my bone marrow was more healthy than it had been six years before. I was 50 and in good shape from having had a house cleaning business the previous seven years” she says.
While Heidi is still on immunosuppressants and preventative drugs and is cautious about germ exposure, she considers herself very blessed. “I was extremely fortunate to not need much help after my transplant. My husband only had to take off a week from work, though he did become quite skilled at flushing my PICC line and giving me infusions for the first few months at home” she says.
Heidi also credits her faith as a major factor in her recovery. “I leaned on God tremendously through the very painful four weeks in the hospital and emotionally difficult first six weeks at home.”
Today Heidi isn’t letting her limitations stop her from living the life she wants to. While cancer took the spotlight for the past decade, Heidi has many passions she is rediscovering: photography, writing, hiking, jewelry designing, playing tennis and perhaps most impressively Heidi is back in the saddle, literally. Heidi is enjoying horseback riding after a fifteen-year hiatus from the sport, is learning to jump post-transplant, and has recently competed in a show. As a precaution, she wears a mask in the barn and arena, but it having fun doing what she loves. “I experience more joy since my transplant, and have a second chance that many others don’t get. I’ve worked hard on my recovery and gained back my strength. In many respects, I feel better than I have in years. It’s a life-changing, but also a life-giving procedure, so I feel very blessed.”
Contributed by: Jennifer Acker
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 the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.