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People living with ET and taking Hydrea: Anybody setting records?
Blood Cancers & Disorders | Last Active: Mar 28 11:40am | Replies (63)Comment receiving replies
Welcome to Connect, @johngrudnowski. I’m a little envious to see you’re in Costa Rica…sunshine and warmth! I’m in the cold north of Wisconsin and Mother Nature is giving us the cold shoulder
It sounds like you’re responding very well to being on Hydrea for your ET. It’s one of those blood conditions that can go undetected until there is an event. In your case it was a heart attack at an early age. I know from experience that it can be unsettling to receive a diagnosis that may impact you for the rest of your life. So it’s really encouraging when you see positive experiences like @lefsequeen having had ET for 30 years and doing well!
Was it the heart attack that brought on all the testing and the discovery of the JAK2 mutation?
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No actually it was not the heart attack. The heart attack was diagnosed as stress related due to my crazy work schedule and near constant travel. But in July 2023 I noticed the high platelet count and in my Mayo physical in December discussed with my internist who got me to hematology. I’ve had platelets at 570 after my heart attack, in the 500s since 2019 and high 400s since 2015 but it apparently wasn’t high enough to get to hematology. It’s all good I’m just happy to have a potential reason for it and a path for treatment. I’d love to continue to learn from this group and connect with others. I am nervous about the Hydrea but hey if it’s possible to go 30+ years I’m hopeful.