Patient Story: Andy

Andy Age: 65 Essential Thromobocythemia (ET)

"While riding I keep thinking how my blood, thick with platelets, needs a strong heart. So, I keep riding."

How Cycling Gives a Daily Read Out to Andy's Health

In October 2002, at the age of 50, I took part in a cross country bicycle tour. In one month our group of 25 riders cycled from Los Angeles to Savannah, GA, averaging 110 miles each day. When I got home to Albuquerque NM, I was feeling extremely fit and healthy. Soon after, I visited my regular doctor for an annual lipid profile. Some days later when I asked him how my cholesterol was, he mentioned that suddenly I had an overabundance of platelets and scheduled an appointment for me at a hematologist’s office. That was a total surprise to me. After all, I was feeling truly fine from the long bike ride.

In January 2003 I went to a hematologist who did a bone marrow biopsy on me and told me I had essential thrombocythemia, or ET. He put me on Agrylin which I used for two years. I had no difficulty with Agrylin, compared to many users who report side effects. I looked online and read as much as I could on ET. I began attending patient conferences. One thing the hematologist told me was to continue exercising, especially at high altitudes.

In 2006, still feeling good, I went to visit Dr. Tefferi at the Mayo Clinic in Rochester MN. He looked at my peripheral blood and told me I did not have ET, but myelofibrosis. Again I read a lot on MF and felt that my condition had somehow changed for the worse.

My wife and sister also read up on MF and learned of its poor outcome in most patients.

In 2006 at a patient conference in Arizona I met a woman in her 50’s who said she’d been diagnosed with MF in her 20’s. Seeing her gave me hope that some MF people seem to live a normal life. At that same conference I met a man who in his first year post-diagnosis with MF could not walk up a few stairs. He reported his hemoglobin had dropped to around 7.

I opted to give up on the Agrylin and since 2006 have been taking nothing more than a baby aspirin every other day, plus supplements. I currently take niacin for cholesterol, also folic acid, flax oil, CoQ10, and vitamin D (every other day). I feel the supplements are helping, though my hematologist disagrees.

I am retired and continue cycling, but slower. Albuquerque is at 5000 feet and I do appreciate the extra effort needed to climb hills and mountains. While riding I keep thinking how my blood, thick with platelets, needs a strong heart. So I keep riding. My HG level has remained around 11 or 12. Riding the bike gives me a daily a readout of my health status.

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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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