Sounds like Becky has been through quite a lot. I am looking at mitral valve repair, but am holding off until I can be sure insurance will pay for the transcath procedure instead of open heart surgery.

In dealing with a variety of co-morbidities along with ET, I've learned that a) most docs have never heard of ET, and b) the better you can get the platelets under control, the easier it is to deal with all the other stuff.

I would ask the doc if he thinks a bone marrow would be useful. And you can ask if other blood cancers have been ruled out. My guess is that the blood tests that detected the JAK2 included tests also ruled out leukemia or other cancers.

The good news is that hematologists are WAY more up on ET and other MPNs than they were 10 years ago. So diagnoses can be made better and faster.

Doctors still need to do better helping patients understand the disease.