Steve was diagnosed at 42 and shares:
I’m now 46 years old and was diagnosed with polycythaemia rubra vera
(prv) just over 4 years ago. People used to say to me you have a nice
tanned complexion. 4 years on I now know it wasn’t a tan but it was my red blood count which was off the scale ( hct reading of 63 ). I had other symptoms; blood shot eyes , really bad dizzy spells and vomiting etc which was really scary. One moment you’re fine the next the whole world starts to spin,but what really made me seek help was a crippling pain in my right ankle which turned the joint black so off I went to the doctor who sent me to have a routine blood test. A week later I was at work when I got a phone call from the haematology dept of the hospital telling me to drop everything and get to the hospital because my red blood count was really very very high. So how am I feeling at this point?‘B….y scared and I don’t mind admitting this. By this point my partner had joined me and she is also scared! Anyway I wait to see the haematologist who sat me down and explained to me that my hct level was really very very high and that she will need to take a blood sample. A reading of 63 is what came back from the lab. Then she started talking about possible causes and the words polycythaemia rubra vera enter my head for the first time. I ask the question am I going to live, am I going to die what is my future, do I have one ????? The doctor looked me in the eye and said ‘you are very very lucky! You were a heart attack or major stroke waiting to happen but we’ve caught it and treatment will start straight away.’ So off I went to the day unit because they had to start taking blood off there and then which wasn’t great but it had to be done. Then followed a month of venesections every other day mixed with hydroxycarbamide because my veins got so hard they couldn’t get the dart in to draw the blood off. 2 months go by with countless venesections later and eventually my hct level was 45, which to this day is my target limit .
Life 4 years on and I’m doing really well although I have a lifelong condition with treatment every 6 weeks and weekly hydroxycarbamide capsules a week. I and my haematologist think we’ve found a nice balance but who knows how the condition will affect me as I get older? I do get fatigue but I work part time now for the Royal Mail which I love because I need to be free for hospital time. I do sometimes ask the question why me? but I do like to be different;( ha ha!). I have a wonderful doctor and all the staff at the hospital looking after me so I’m in good hands. Even so I do feel isolated at times despite my wonderful partner who is very supportive and who did so much for me in the early days but no one knows as I’m the one living with the condition. I do hope my story can bring some comfort to newly diagnosed people and remember you are not alone. As I continue into the next 4 years with my mpn I wonder what challenges await but I know one thing, I’m going to live my life to the full and enjoy every day. So be strong, stay positive. Having prv can be turned into a positive thing. God bless you all xx