Saw the haemo today and officially diagnosed ET Jak2+. In a way I’m glad there is a reason for the way I have been feeling for the last four years but in another way I felt rather deflated and upset. The consultant I was supposed to see had left and had been replaced with a locum, who said he probably wouldn’t be around by the time I go back in 8 weeks.
Having read a lot of posts here I was armed with quite a few questions but after he said the widespread pain and fatigue I experience was definately not related to ET I rather switched off. I also asked if it was advisable to keep taking HRT pills (Premarin) as I had read on patient power that most haemos weren’t keen on the idea and recommended stopping it. He said there was no reason not to keep taking it and didn’t seem at all bothered. Now I’m confused! Any advice on that one?
The nurse was really nice but said I would have difficulty having my request for free prescriptions accepted as ET was a pre-cancerous condition. Not what I’ve read here!
I am booked in for a bone marrow biopsy in a week so the hospital have a base line assessment of everything - what fun!
The main reason I think I felt the way I did was the thought that every time I go for an appointment I am going to get another locum and won’t get any continuity. Can I request a referral to another consultant? I am only 45 minutes from Addenbrookes in Cambridge which seem to have a good MPN team - does anyone go there, and if so, would you recommend them?
Thanks for reading