I was diagnosed with PV about five years ago just after moving to another state. I had been with my internist for over 49 years and had great care from him and any MD he referred me to. He told me to find a hematologist quickly and not knowing anyone in my new state, I went with local cancer center. I got off on wrong foot when I refused a weigh in (that’s not the first time that’s happened). I was obese (still am after losing 67 lbs) so I don’t like the fairly obvious confirmation Im fat. Move on I say unless I need an anesthesiologist.
The hematologist there didn’t seem very interested in more than prescribing HU and it was obvious she did not like me asking questions. So, I asked my new neighbors on a neighborhood blog and found the doctor I have now.
I like her, she answered all my questions and she doubled dose of HU and I felt better and now I see her PA more often and she too listens and answers questions.
I know when my hematocrit hits 42. My legs tell me. I had a nurse at the Infusion Center tell me I didn’t need a phlebotomy because my hematocrit wasnt high enough! I told her to get the doctor on the phone. I had the phlebotomy. You have to advocate for yourself!
I complain of exhaustion, pain in my calves primarily. Things got better when I was referred to an internist who prescribed less TV news (really) and physical therapy. He too listened to me and didn’t make me feel like I was only having trouble because of my weight.
May I ask what complications have you in a wheelchair? Have you had PT?
I blame, maybe or maybe not appropriately, as much on my age as I do on the PV and HU. My nails and hair aren’t what they were, I have neuropathy in both feet (no, not diabetic), my eyes aren’t as good as they were, my grip isn’t as good as it was, but I know it’s more old age or it’s a major contributing factor.
Maybe it’s the PV/HU? This week my leg and knee are killing me. Ive diagnosed tendinitis and have taken some pain med and am icing it with pretty good results but I suppose it could be the PV…to me it doesn’t matter.
Everyone needs to vent now and again. And, my experience is that a lot of people like to share their ailments but shut down when it’s your turn to share yours. So, this forum works except for the lack of coffee and snacks while we “talk”😉
I have a lot of respect and affection for the doctors I had/have that listen to me and explain what they are thinking and why a particular course of treatment but I always remember something my mother used to say, with deference to doctors everywhere, “There’s a reason they call them PRACTICING physicians…”
Feel better and feel free to bellyache!