Polycythemia Vera (PV)

    Age: N/A

    "Completing a 200-mile bike ride in one day may not be for everyone. The training would be hard on healthy people. As an MPN patient, I have a few more obstacles to overcome. Even with the PV diagnosis, I am not going to give up on my passion."

    Kenny Sipes is keeping his passion alive despite PV

    My name is Kenny Sipes, I’m from a little town in Kentucky. In September of 2009, I was diagnosed with Polycythemia Vera and Hemochromatosis. I have been riding and racing bicycles for about 20 years. I race road, mountain, cyclocross and crit bicycles. My family is known for its two-wheeled competiveness. My older and younger brothers have raced motocross and two of my nephews race motocross professionally. I get cold easy and my hands and nose will hurt even in 80º degree temperatures. It is almost impossible to train thru the winter months, even thou I own about every kind of warm clothing for cycling

    My diagnosis came a month before the start of Cyclocross season. Immediately, I started on 500mg of HU with monthly phlebs. Within one month, I was up to 1500mg HU and weekly phlebs. I kept on racing and finished 2009 with the most points of anyone in the USA in my category and age bracket. My results have ever gotten near that since.

    I have kept my racing up and I try to train 3 – 4 days a week. Since 2009, I have been on several big name teams in this area. I have raced at the national level several times, even thou I am not that competitive anymore. My Hematologist knows how important cycling is to me and he plans my treatments around it. I cannot train the way I want to after phlebotomies, so unless it is an emergency I try not to get any phlebotomies until after the season in the winter months.

    For 2015, I will be racing on the road for a new team, Be Real Sports. I have raced cyclocross for 2 years for BRS, but this year they want to get a road team together. To train for the road season, several of us have started training on gravel roads. It’s a slower pace than paved roads, but since the winter is hard on me, it suits me fine. Im 53 yo and weigh 210 in the winter and 190 in the summer. Keeping my weight below 200 in the winter is a struggle.

    This year I will face a new challenge. Along with a couple of riding buddies, I’m going to attempt a 200 mile Race/Ride in Emporia, Kansas on May 30. This ride is a test against yourself and the elements. Most of the race is on gravel roads and is in wide-open farm country in the middle of the state. There will be approximately 1,500 other riders starting all at 6am. The goal is to finish before sunset. Of course, if you are brave enough and have good enough lights, you ride until you finish. The event is broken into 50-mile sections. Every rider is required to have at least one support person, who travels on a different path to each stop and helps to keep the riders going. There will be no support people between the 50-mile stops. I will have to carry my own water, several spare inner tubes, extra parts, food, an extra tire, a couple communication devices, my own maps and GPS.

    I think it will take me 14 hours to complete the ride before sunset. How do you train for something like this? I start out by just riding when work and the weather allows. As I said earlier, my body hurts in the cold. I have had the varicose veins stripped twice in one leg. This is the leg that my friends refer to as my bad leg. This leg does not like the cold either. This winter, I am really struggling with getting outside to ride. I hate with a passion to ride indoors and for the most part, will not do it. I have to toughen up my BUTT, my hands and my feet. The constant jar of the gravel will bounce apart the best arms and legs. The neck muscles ach from holding your head at one angle for 14+ hours. Did I mention the wind on the flat prairies of Kansas?

    Completing a 200-mile bike ride in one day may not be for everyone. The training would be hard on healthy people. As an MPN patient, I have a few more obstacles to overcome. Even with the PV diagnosis, I am not going to give up on my passion.

    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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