• MARY

    Myelofibrosis (MF)
    Support Group Leader and MF Patient

    In 2012, Mary Grant joined a support group in Boise to help her navigate a primary myelofibrosis diagnosis. Today she leads that group, meeting with other patients for lunches and holiday get-togethers. Over the years, Mary has formed close friendships, grieved the losses of members, and welcomed new members. One patient is a SCT survivor, others are in clinical trials, but this group shares in common their mutual support and diverse knowledge of MPNs. Mary considers herself a rare patient in that with minimal intervention, she is doing better today than when she was first diagnosed with PMF.

    “The original diagnosis I received was not kind or encouraging. They made me feel like I was going to die, and it would be soon. When doctors said, ‘The only cure is a SCT, and you’re too old and have no siblings’ and ‘There’s a drug we can give you, but it makes you feel like you have the flu,’… it felt like a death sentence.”

    Mary’s diagnosis began with a startling phone call at midnight. She had been to the urgent care that day because she was having difficulty catching her breath, but everything checked out fine until her labs were finally read. The doctor on the other end of the line told her she was high risk for having a heart attack because her hemoglobin was dangerously low (6.1). She was advised to get to the hospital immediately. When she arrived, she was given three units of blood and underwent a colonoscopy and endoscopy to determine if she had internal bleeding; however, everything checked out fine. But it wasn’t long before her hemoglobin started dropping again. After meeting with an oncologist, Mary was told she had PMF and would be transfusion-dependent (she would need blood every 10-14 days.) However, Mary sought out a second opinion at the Mayo Clinic in Scottsdale, Arizona.

    “That is where I was given hope,” she says. “They said I could get a transplant into my early 70’s if I didn’t have other issues. I had just turned 65, but they wouldn’t do a transplant unless I were actually dying, so I called it my ‘Hail Mary pass’”.

    The Mayo Clinic also advised Mary to start with Procrit injections. Slowly Mary’s mindset shifted. She had spent forty years taking care of other family members and realized it was time to take care of herself. “When I was diagnosed, I had so much stress from caring for my mother and, ultimately, from her death. I tell people to be sure to take care of themselves when caring for others or they lose themselves, and that is what happened to me.” From September 2012 to September 2013, she had received 52 pints of blood, but then something unexpected happened. Mary’s hemoglobin slowly went up, so much so that she wasn’t transfusion dependent. So, what was it? In talking about her progress, Mary says, “I believe I am in remission, but the doctors say there is no such thing as remission. The only cure in a SCT. They say I’m stable.” Currently, Mary gets her blood checked every six months, and her hemoglobin is usually around 14. Mary adheres to 10mg of prednisone and has no other symptoms related to MF. Her doctor had tried to wean her off of prednisone five years ago, but her numbers plummeted. Mary is also a firm believer in the collective power of positive energy from her support group.

    “I continue to learn about MPNs, along with everyone in my group. We have had Zoom calls for the last two months, and it’s so nice to see how everyone is doing and what we learn from one another. I think it’s important to have fun. We laugh a lot and we’re always there for each other. When I first started, there wasn’t much information or help for us. Now there are so many resources that it is almost overwhelming. Today, I deal with things as they come up. I have many signs in my house that say things like ‘Joy.’ And I do choose joy now, every day.”

    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.

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