Mark R – aged 50
Using the bucket of energy wisely.
I was diagnosed with polycythaemia rubra vera in 1999, which progressed to myelofibrosis in 2019. This was confirmed by a bone marrow biopsy which showed I am JAK2 positive.
When I was first diagnosed in 1999, I was devastated! My wife and I had two young children, and I felt very unsure of what the future would hold for all of us. However, I continued to carry on with normal life, working, going on family holidays, fishing, doing a building project on our home – and enjoying life to the full.
My MPN was initially treated with venesections by my GP, but my platelet count continued to rise, so I was prescribed interferon (self injections 3 times a week). Side effects meant that this form of treatment couldn’t continue, so I was switched to taking anagrelide orally, and this was managed by telephone appointments for over a decade.
In late 2017 into early 2018, I started to feel unwell with heart palpitations and severe fatigue, and when I attended a haematology clinic I was told to stop taking anagrelide immediately. I went on a planned road trip to New Zealand, with a plan to have another bone marrow biopsy in January 2019. In February I was diagnosed with myelofibrosis, which was a massive blow to me and my incredibly close family.
At the start, I was prescribed ruxolitinib and to continue with aspirin, as I’d done since 1999. Unfortunately ruxolitinib gave me high blood pressure, and so I take ramipril to control this. I have had a consultation for a stem cell transplant, and an amazing 90 matches were found, but the decision was made that the transplant is not necessary at the present moment.
Since my diagnosis of myelofibrosis, I have had to reduce my working hours to help with my fatigue. Shielding at home during the pandemic has made me realise that my fatigue is manageable, but that I need to be thoughtful on how I use the “bucket of energy” that I wake up with every morning.
Throughout the last two and a half years since my diagnosis, my employers and work colleagues have been incredibly supportive, as have my family and friends. My wife is my rock! My motto is to keep being positive each and every day and try to avoid any negative situations, as I realise this uses too much of my precious energy.
