I was diagnosed earlier this year and, on the advice of my haematologist, came straight to this website for some further information. I really hoped to read about other people with the condition but there were no personal accounts of polycythaemia vera on here so I thought I would add one!
I am 33 and have just been diagnosed with polycythaemia vera (September 2014). My husband and I were trying for a baby (not very successfully) and went to our doctor who did some routine blood tests. He found that my haemaglobin was a little higher than normal and referred me to a haematologist.
I googled ‘high haemaglobin’ and came to the conclusion that I must be a bit dehydrated and that I must have overdone the wine the week of my blood test! My haematologist did some further tests which confirmed that I am JAK positive. He advised me that I have polycythaemia vera which was very much a shock! I really wasn't expecting it and I thought all these appointments were a bit of fuss about nothing.
In hindsight, I have had symptoms for years. I have struggled with migraine with aura since I was a teenager and I’ve had constant headaches for years. In more recent years, they were centred behind my right ear but I thought it was just a tension headache brought on by a stressful job. I have been taking ibruprofen on an almost daily basis for years.
Since my diagnosis, I have had several venesections and take low dose aspirin every day. I can’t tell you how much this has improved my headaches! It’s so refreshing not to have to struggle through a day of work in pain. I am very grateful to my doctor and haematologist.
As for starting a family, my haematologist says there’s no reason why we shouldn’t have children and we have been referred to a fertility specialist. She thinks that taking ibruprofen on a daily basis has possibly given me polycystic ovaries and has prescribed clomid.....so fingers crossed....