I am an active 82 yr old female. For 10 years I had an elevated platelet count between 500-700. My hemotologist took a “let’s monitor with no treatment”. Then my new hemotologist, after high platelets for 10 yrs, had tests done for the JAK 2 mutation and it was positive. About the same time I began to become short of breath and it became progressively worse. I had a CT scan with contrast of my lungs. I immediately ended up in the ER with both a significant allergic reaction to the dye and multiple pulmonary embolisms, one quite large. I was put on a heparin drip for 3 days and then transitioned to Xarelto. Other tests showed an enlarged right heart with both heart and lung hypertension.

Several weeks later my platelets were over 800 and my hemotologist put me on 500 mg of hydroxyurea daily. The platelet numbers came down to under 400 within several weeks and now, six months later, they are staying under in the 300s. I continue daily HU.

A recent radioactive tracer test showed evidence of small clots in both lungs. I have pulmonary hypertension and still get short of breath but nothing like with my original crisis. My right heart has returned to normal size. I remain on Xarelto and HU daily.

I wonder if there is something we are missing or if we are on the right track.