Essential Thrombocythemia (ET)


    “I realize I have to do things now and not put things off until tomorrow."
    Meet Jay Potter ET patient of Charlotte, North Carolina
     A retired Campus Dean at Central Piedmont Community College, and ET patient who attributes a healthy diet and physical activity to feeling well

    Jay Potter, a former campus dean at Central Piedmont Community College, decided an early retirement was a wise idea. Jay lost his two older brothers at ages 62 and 68 and perhaps that gave him the nudge to make a change. He adds, “I realize I have to do things now and not put things off until tomorrow. Of course that’s also a function of my age. I know that even without an ET diagnosis, you will not be able to do things in your seventies that you could do in your sixties.”

    And Jay has plans for his retirement; he is looking forward to international travel, volunteering for causes he has an affinity for, exercising, cooking healthy dishes, attending plays and sporting events to name a few.  Jay also enjoys playing the piano by ear and spending time with a core group of friends he keeps in contact with weekly.

    But being diagnosed with a rare blood disease has its challenges. Jay’s biggest obstacle has been learning to navigate the healthcare system.  “I have to be my own advocate especially as it relates to care options.”  When pressed to stop his current treatment because it might have been the cause of his ankle ulcers, Jay challenged his healthcare team to not make a quick decision to put him on another drug that may have more serious side effects and be a more expensive treatment.

    It’s also been beneficial to Jay to do some of his own research. “I’ve really dived into the internet to learn as much as possible about my condition and how it can be helped or hurt by stressors, exercise, diet or even maybe environmental conditions.”  And finding the support of the MPN foundation has been a bonus for Jay as well.  Being a lifelong learner, he notes, “I can learn from other people’s experiences.”

    Jay also believes an improved diet has helped his energy levels. He eats oatmeal for breakfast regularly, has cut down on red meat and fried foods, and enjoys more home cooked meals.  Exercise is also important to Jay, as a former runner, now an avid walker he aims to walk fifteen to twenty miles a week which he finds helps him to feel and sleep better.

    His advice to the newly diagnosed MPN patient is to learn all you can about the disease and be willing to question and challenge your doctor if you have concerns.  “If your doctor won’t listen or dismisses your concerns, find a new one.”  Take it from Jay, eat well, rest when you need to, get outside, and don’t settle for mediocrity from your healthcare team.

    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.

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