@lindakay55 Hello!
I was diagnosed with PV/JAK2 about five years ago. I had my regular soot with my GP for blood work to check my thyroid levels. The nightmare before and morning of appt I had a terrible pain in my knee. They took blood and sent me for a knee X-ray.
My GP, looking quite shocked, told me my hematocrit level was very high and because I had suffered from severe anemia all through my 20-40’s, I asked if it had something to do with that. He explained it was pretty much the opposite. He also told me the pain in my knee was probably from gout because my uric acid level was way too high.
He sent me for a JAK2 blood test and it was positive. Then he told me to find a hematologist asap (I had just moved out of state). It was then I realized it was cancer because, duh, hematologist office was in the “Cancer Center”! My GP of over 40 years hadn’t mentioned it.
I was scared and then I started reading up on PV.
I changed hematologists because I wanted a doctor who listened to my questions and seemed interested in me.
I asked what the prognosis was and calmed down after that discussion. That was over 5 years ago.
I take 1000 mg of Hydroxyurea daily and my benchmark for a phlebotomy I’d my hematocrit at 42 or higher. I started seeing the hematologist every couple of months and having a phlebotomy every couple of months and now I see the doctor every 4 months and phlebotomy about every 4 months. I can feel it in my legs when my hematocrit is 42 or higher, get the blood tested and if I’m right (and I usually am) have the phlebotomy.
In my opinion, there are worse things than phlebotomy and I am horrible to draw blood from. But, it is what it is.
I’m 78. One of the most frustrating things about this, for me, is that they can’t tell me why the hematocrit sometimes stays low or why it will go up. It may have something to do with hydration. The exhaustion I felt (probably from the HU) is not as bad as it was and I’ve learned to rest when I’m tired (I worked for 47 years and I had to learn that).
So, the first thing I’ll say to you is, if you’re scared try to calm down and make a list of questions and ask your doctor for those answers. Hydrate. Exercise and eat healthy.
If you are not comfortable with your doctor or treatment plan, discuss it with your doctor and/or get a second opinion or find another doctor. You are in charge!
I love this forum because PV is rare enough that it’s a good thing to have others going through it and finding some similarities in symptoms and treatment.
So, please ask your questions and share all you want to because no doubt someone here can help.