- Polycythemia Vera
- Interviews
Roly's interview
How did all start?
Following a routine blood test in August 2015 with my GP he flagged up a problem as my hemoglobin level was high at just over 200. While cell count was also high. I was referred to a haematologist who diagnosed polycythemia RV and started weekly venesections which continued for the next 10 weeks. During that time he did a bone marrow aspiration which confirmed the diagnosis of a Jak2 abnormality. Prior to the diagnosis I suffered from gout for a short period and my uric acid level was high and I was prescribed Allopurinal. After the venesections my haemoglobin was stable for a while after which I started to attend a hospital haematology clinic that better understood the condition. I was prescribed hydroxycarbamide, but it took a while to arrive at the correct dose; too little allowed by blood count to increase and too much my platelets went very low. I ended up on one 500mg capsule a day which seems to be the correct level to maintain a stable count. One year after initial diagnosis I suffered a dvt in my calf. This was dealt with by daily injections of Clexane which was replaced with Rivaroxaban tablets which I'll need to take permanently. Within three months of initial diagnosis my weight decreased by 20lb and remained at that level since.
Do you already have a diagnosis? How long did it take you to get it?
After my GP's initial diagnosis I was referred to the haematology and oncology department of one of the main Bristol hospitals. The wait time for my first appointment was several months so I opted to see a private consultant, as I had medical insurance. My diagnosis was made within two weeks of being referred and I continued with private consultations and venesections for six months, at which time I opted to change to NHS hospital treatment. The treatment and care I have received from the hospital has been exceptional.
What things have you stopped doing?
Eating high purine foods.
What do you think about the future?
I have no doubt that the future is good.
What would you like to do if you didn’t have your condition?
Eat plenty of shellfish.
If you had to describe your life in a sentence, what would it be?
Contentment, particularly after taking early retirement from my job.
Finally, what advice would you give to a person in a similar situation?
Take it in your stride and don't let it impact on your daily life.
