I have been interested to read everyones varying views and opinions on how well they feel their condition is managed, it would be interesting to know if their is a minimum criteria we can expect for example:-
Bone marrow biopsy - should we have one at time of diagnosis and how frequent thereafter?
Physical examination - how often should we reasonably expect out spleen to be examined?
What information can we expect to be given at each appointment?
I have to ask for my blood results every time otherwise I am just told if venesection is required or not and when my haem would like to see me again.
Any feedback would be interesting to read, after being diagnosed with PV for 18 months now it still amazes me to read about our differing experiences, I know each patient can be quite different in symptoms and treatment but surely there should be minimum standards that we can all expect.
I make sure now that I see the same heamotologist at every appointment and as a result I am developing a good relationship with her now and feel better about my care than I have in the past. I feel more comfortable about asking questions and I am more trusting in her answers than I have been when I have asked questions to others in the past. I have never had a bmb and although I don't particularly want one as I understand saying they are unpleasant is an understatement, if this had a positive effect on the monitoring of my condition I would obviously have one. I have had my spleen examined twice, once at the time of diagnosis but I was 38 wks pregnant and therefore baby was in the way and I have had one since.
Take care everyone - hope you are all enjoying the sunshine.