MPN specialist v hematologist
Hey MPN brothers and sisters. 58F Jak2ET. So after almost a year since dx I finally got to see an MPN specialist today. I requested a referral months ago but my hematologist asked me to give him 6 months. The hematologist prior to him told me to my face that she did not believe me when I described my symptoms. The specialist first scared the hell out of me when he explained how high risk I was for a stoke or heart attack and that the arterial clot I suffered in 2023 was a huge warning sign. He then pointed out that an interferon should have been my first line of treatment, not the HU and anagrelide that I could not tolerate. I will be starting Pegasys asap. He then outlined his intention to do everything he could to alleviate my symptoms not just lower my platelets, which have been climbing quickly since stopping anagrelide. There was a lot more conversation but bottom line is that if at all possible, insist on seeing an MPN specialist. This is the first time I have had hope and had my eyes opened all at the same time. And drink lots of water and do your cardio! Happy Fourth of July❤️