Uncertain about the future

Will, a 62 year old self-employed architect lives in Somerset.

I was diagnosed with PV in 2010 when a swelling came up on my arm which was recognised by my GP as a haematoma or  internal bleeding.  A blood test showed that my haematocrit level was 50% higher than it should be. At the time I felt fine but with hindsight realised that I had suffered serious fatigue throughout the preceding year which I had put down to an exceptionally demanding work schedule.

The only treatment I’ve had from the outset has been venesections although their frequency has varied enormously. Last year I went for several months without a venesection because my platelet count was low (around 50) but ultimately a registrar said that my haematocrit count was too high to risk not having one. Then earlier this year I needed more than anticipated because my haematocrit level soared again.

I now suffer from migraines about once a week, for which I take tablets, but I’m generally free of side effects. I get less night sweats than I used to and itching skin only bothers me in cold weather. I try to plan my work so that any busy day with meetings and travel is followed by a quiet day in my office at home to avoid fatigue and migraines.

For me the biggest issue is how will the disease progress? I have fibrous bone marrow but there is no way of knowing how long progression to MF will take. My consultants tell me I must stay young and fit to hold off the inevitable, but of course it worries me constantly as I have a family and need to work. Actually I’d say the worry and uncertainty is one of the most serious side effects of this disease.

Keeping fit is the only way I know to stay young. We have a large and demanding garden, I do a lot of construction work on my own house and cycle or walk when I have time. 

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