I am 56 years old, single parent with 4 children ,two of which are still at home, I was diagnosed with Jak2 Mutation in January following a year and a half of constant admissions into Hospital with Kidney stones and Urinary sepsis.
then told i had Polycythaemia Vera in Feb and a week later stage 1 Myleofibrosis.
Currently waiting for a consultant to return from holiday so i can sign consent form to start Ruxolitiinb.
I am having my first venesection tomorrow and am taking Asprin,
NHS would not approve funding for Ruxolitinib so i had to use my Bupa Healthcare which fortunately is funded by my employers.
I am slowly working my way through all the information, but my consultant asked me if i had any questions, I feel so very dumb because my mind went blank and i had not got a clue what to ask
can anyone with any experience of this condition please advise what i should be asking him?
I would appreciate any help at all at this early stage, thanks in anticipation