I agree with "welcome to your new world" @cmcj and this forum has been a game changer for me. Eases any anxiety I may have over different symptoms or just the need for moral support from others going through the same thing. I consider myself a young 60, very healthy with my diet (I'm GF & DF to reduce any inflammation which causes autoimmune diseases, rampant in my family) and pretty high level of activity.
The hardest part for me so far is the extreme fatigue, I don't do resting well. I have found I have to manage my activity and have had to reduce it greatly. However my goal is to find my "new norm" with what hemoglobin # makes me feel the best. I was brought down to 11 (I'm 5'2" 125) and it's definitely too low for me and my guess is I'm now anemic which is causing the fatigue. I'm really hoping that is it when I get my CBC done this Tues.

I've read and seen from this group that getting a Saline infusion after each phlebotomy helps with the down days that can occur after it.
I'm only on one low dose aspirin daily, no other meds and both my HemoOnc doc & GP both don't feel I need any meds now. I'm not even getting a bone biopsy for a couple years from my first evaluation with the HemoOnc doc.
I've been reading as much as possible, I'm ignoring all references to once diagnosed you have 14 or 20 years to live. It has got to ve different for everyone and I'm in the best shape and healthiest I've been my whole life besides the stupid PV 🙃
Stay strong and ask lots of questions like you're doing!

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