Any one else here have polycythemia vera?
I received an email from Kaiser that I have a JAK2 mutation that means I have PV 3 1/2 weeks ago. I haven't spoken to anyway yet as they move like slugs I guess, but finally have an appointment this coming Thursday. I thought I'd come on here and introduce myself. I'm Susan and live in Concord, CA.
Good Day, Susan!
Welcome to the community of many when we speak about the various blood conditions. I would say come prepared for your appointment on Thursday:
*Ask for clear layman's terms on the condition Polycythemia Vera.
*Ask if the disease is active and if treatment is needed now or later.
Bring a notebook to write down important points they mention and give yourself grace if you feel overwhelmed in the moment. Here are a few helpful links with some perspectives on PV as well as a general overview, perhaps you can use these thoughts to help stir the conversation on your doctor visit this week.
Hoping all goes well and if you'd like, let us know how it goes. Best!
Yolanda (Team Member)
https://blood-cancer.com/stories/pv
https://blood-cancer.com/clinical/polycythemia-veraYolalnda, thank you so much for your reply and for suggesting these resources. I have read quite a bit about it and am actually looking forward to my first doctor visit tomorrow. Thank you again. I will be checking back here regularly!! Thanks again.
I'm so happy you find the suggestions as a start. I hope all went well at your doctor's visit, and our eagerness helps build a positive experience with your health team despite everything; as you chime in to your patient advocate shield. Wishing you the very best!
Yolanda (Team Member)
