JAK2 negative...now what?
Hi all. I’m a 60 y/o female. I have had consistently above normal RBC, HCT, and. hemoglobin for at least 10 years. I saw a hematologist in 2011 who sent me for a sleep study and never saw me again. I started seeing a different Dr this past January because my HCT was 59.8%. Note that since diagnosis I’ve read everything I can get my hands on regarding polycythemia/erythrocytosis and have had at one time or another every symptom listed (and have been to various specialist to resolves some of these symptoms to no avail). After 5 phlebotomies my HCT is at 46.9% but my WBC is raising to nearly above normal. Since my JAK2 test was negative, lowering HCT to <48% is the doctor’s only focus. He will do no more testing—arterial O2, EPO, BMB—even though I have no history of cardiac or pulmonary disease. As long as my HCT is below the magic 48%, no more phlebotomist. He says my complaints of itching can’t be due to blood counts since I not only itch after bathing, but also at bedtime. He says my fatigue, shortness of breath, bleeding gums, and headaches aren’t symptoms of polycythemia. I don’t even have a follow up with him until the end of May! Basically he’s leaving me on my own.
I’ve had my records sent to Mayo Clinic to see if they are willing to see me. I haven’t heard back yet and I have no idea how long it will be before I do hear back. I’m terrified that they’ll say no because I have no where else to turn. There are no MPN specialists in my state. The hematologist I’m seeing now is the head of the Hem/Onc department at the hospital here.
In the meantime, does anyone have any suggestions on what I should do? How do I advocate for myself when my Dr won’t even see me? I’m especially worried because this has been going on as long as it has without treatment. I have no idea what it means for my WBC to suddenly jump up. Quite frankly, I’m feeling so lost right now.