I am 53 and was diagnosed last week with ET caused by a CALR mutation and with a platelet count of 1250.
I have an appointment in 2 weeks to see a consultant at the MPN clinic at my local hospital. I had a heart valve replaced 15 years ago and have been on Warfarin, Simvastatin and more recently on Aspirin. I don't know what meds they will put me on but have a feeling it'll he Hydroxycarbomide.
The thing is I feel OK and am apprehensive about taking meds that will make me feel bad. I understand the reasons why I need to take something and am nervous about taking a toxic drug over a long period.
I know I should have a million things to ask but it's all a bit daunting right now.
What questions do you think I should be asking the consultant ?
Are there any tips you can throw my way on dealing with this illness ?