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Thank you for reaching out and sharing your story. Before the diagnosis, I’d never even heard of the disorder. I truly hope my hematologist is on top of things as I would hate to have to switch that many times, BUT I have no problem doing so if I feel I’m not getting the care I deserve. How long did you have symptoms before you were actually diagnosed? I’ve only had one bleed and am scheduled for 5 more in the next 5 weeks to get my levels down. Not sure how long my levels have been elevated so I’m really hoping my organs are not damaged from pumping thick blood over that time. How are you feeling now?? Hopefully you are doing well.
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Say something to you my doctor put me on eliquis which is a button it had worked Wonder keep my blood thin. When I first was diagnosed with it pv my blood was so thick that they we're having a hard time getting at the blood out of me with the big needle
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I hadn't heard of it either. Looking back I think I had symptoms for many years but they just prescribed antibiotics for my white counts being elevated. Did they check your spleen? I have to go in every couple of months to get them checked and usually need a phlebotomy everytime. The reason I'm on my fifth hematologist is 3 moved out of state and then my insurance changed to provider specific so her to change.