Hi @katrink

I was diagnosed with PV in July 2024. I had been feeling a bit “off” for about a year, but my annual physicals had not revealed anything out of the ordinary. I usually live and work in New York City, but have houses in southern Indiana and northern Minnesota. My regular primary care doctor is in Southern Indiana just cause it’s easier. I went into a local clinic up in Minnesota while I was doing some work on my cabin up there, and that’s when I found out that I had polycythemia vera from a routine blood draw. Looking back over my test results from my primary care physician in southern Indiana, I found that I had alarmingly elevated WBC, RBC, platelets, and hematocrit for at least the previous three years. That particular, and now former, primary care physician never said anything about any of that. He prescribed Blood pressure control medication….
So in July 2024, after my PV diagnosis I started hydroxyurea, and phlebotomy. The first couple of phlebotomies were like you describe, blood very thick and barely flowing. Luckily, in the small town hospital in two harbors, Minnesota, there was a great nurse who managed to get complete blood draws despite the difficulty. I was on 500 mg of HU, and had a phlebotomy every week for 11 weeks until things finally started getting under control. The hematology oncology doctor that I was working with in Duluth Minnesota did a pretty good job, all things considered. PV is a pretty rare disease and I’m sure that he’d probably never seen a case of it before, as the population of the greater Duluth area is only about 180,000 people. After things were controlled, I went back down to southern Indiana and found a hematology oncology person at the University of Louisville Hospital. He is a clinician and a researcher at the university there. In going over the treatment plan that the doctor from Duluth had initiated, he noticed that I was also being given an iron supplement. The doctor from Duluth saw that my iron was very low, which it turns out is a result of the hydroxyurea doing the job that it’s supposed to do. So giving me iron was interfering with the hydroxyurea, which was why I was having so many phlebotomies. As soon as that excess iron was out of my system, which was in about November 2024, things got a lot better and I have not had a phlebotomy since.
It’s taken some time, but I have educated myself enough about the disease to be able to deal with it on the day to day and live more or less normally. I’m 72 years old, still teaching architecture in New York City, walking about a mile to the subway three days a week to go in for classes. I end up walking about 4 miles on each of my teaching days. And sometimes I’m a bit tired other times perfectly fine. Drink a lot of water, I do about 3 quarts today. Stay with the meds, get some iron through the food you’re eating like dark green vegetables and beets, etc. Try to get out and walk a bit if you can. This whole thing is manageable.