Hey. First time poster here. 2004 I was diagnosed w PV. So far I've not taken any meds for this, but do have phlebotomies. In the beginning I had them twice a week but as of this year - only a couple of times a year and my oncologist is very pleased. I'm wondering, tho, what are the chances that my blood will thicken again and the symptoms return?
Thank you for the opportunity to post and I'm eager to look around and learn what I can from everyone's posts.
Hi lifeootes, just curious, do you have PV or Haemochromatosis? Or both?
Seems to be PV only
Hello again, i have PV also litefootes. Diagnosed last September. My last venesection (phlebotomy) was about 21 weeks ago, prior to that it was much more frequent until they had 1) shrunk my cells?! & 2) depleted my iron reserves & made me anaemic. Anaemia slows down the production of redblood cells and so i am finding my HCT has gone from .48 before my last treatment and continues to decline 20 weeks later. My HCT is now .38. I expect this to rise again at some point. Of course, my blood thickens as my HCT rises & then will thin again following a venesection. I have regular blood tests to check & prevent my HCT rising above .45. I hope this helps xx
Thanks for posting, Johoho. The first 2 or so years I had at least 1 phlebotomy a month with the intent of keeping me anemic. Slowly as years went by, it seemed to work as my HCT took longer to raise the count. For the longest, my hematologist kept my HCT below 35. Its been keeping just at 45 for almost a year now. I guess I'm just wondering if it will stay at this level or start creeping up again. I'll be (shhhh....) 60 this fall and I'm guessing the aging process will thicken it naturally a bit. I found it odd that when my primary Doc discovered my extra thick blood 12 yrs ago, she also discovered I have high BP, rapid heartbeat, diabetes and high cholesterol. Not sure if I've read that all this is a normal thing? w PV? Anyone else have these too?
Thanks, and what a lovely forum!
Thanks for posting! We are so happy you found this community 
My bone marrow biopsy showed 70% infiltrated. What does this really mean. Cll and ET and now on Hydurea
