Uschi K-R aged 69
I was born in Germany but have been living in the UK for the last 45 years, where I raised my family and worked as a teacher of Modern Foreign Languages. In 2013, after a routine blood test with my GP, I was told that I had a slightly elevated haematocrit and platelet count, and that my blood was “sticky” but that no further action was needed at that stage.
In 2019, I was diagnosed with Mitral Valve Insufficiency, resulting in a number of blood tests which showed consistently raised haematocrit and platelet values. After a year, with some symptoms such as headaches, itching, and visual disturbances developing, my cardiologist urged my GP to refer me to a haematologist. Tests led to the diagnosis of Polycythaemia Vera (PV), JAK2 positive, and I was prescribed daily Clopidogrel and Hydroxycarbamide.
I had always considered myself very healthy, rarely saw a doctor and took no medication, so learning I had an incurable blood cancer, especially so soon after the diagnosis of my heart problem, came as quite a shock.
My PV is managed jointly by my local haematologist and the MPN team at Guy’s. I ensure that I keep a close eye on my blood counts, appointments and prescriptions and keep myself informed via MPN Voice, MPN forums and HealthUnlocked.
I am doing very well, with normal and stable blood count values, with no more PV symptoms or bothersome side effects from my medications so far, apart from occasional headaches and tiredness.
I do yoga every morning, walk with friends four times a week, cycle and look after the house and large garden on my own. I also try to eat a healthy and balanced diet, but don’t deny myself treats like a glass of wine or some chocolate most days.
My biggest concern currently is around the possible diminished efficiency of Covid vaccines for PV patients on Hydroxycarbamide. Since “Freedom Day“, I have decided to wear FFP2 face masks in necessary indoor settings, but haven’t yet begun to socialise indoors or travel to see family overseas. I consider myself a positive person, but am feeling the negative effect of not having seen my mother, children and grandchildren for two years. I have not told them of my PV; when I see them, I will let them know and reassure them that I am treated professionally and intend to stay as well as possible for a long time to come!