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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
I was just diagnosed two weeks ago. Am 46 years old. Jak2 positive. Have just started taking Hydrea and my platelets have gone from 594 to 498 in two weeks. I’m also a heart attack survivor which occurred (now I’m told) largely due to ET as I weigh 165 lbs and my cholesterol (and other indicators) are very good. I’d love to connect with you on your 30 years. I’m just reading this and it’s making me very happy to hear.
Replies to "I was just diagnosed two weeks ago. Am 46 years old. Jak2 positive. Have just started..."
Hi, John! Nice to hear from you. I guess I'm not clear on why docs thought the heart attack was due to ET. Clotting? Did you have blockage or anything? I had a nearly fatal brain aneurysm bleed when I was 54. I'd had the ET dx since I was 39. My neurologist said he didn't see why ET would cause the brain aneurysm hemorrhage, but I personally figured there must be some connection. Anyway, my kids were pretty young when I was dx with ET, but I never really had any side effects from HU or the disease, once I got the chronic anemia fatigue resolved and my blood count numbers stabilized. I worked full-time, was busy with all the 4 kids' activities and sports, etc. Honestly, I doubt anybody knew (knows) I had (have) ET, as I've done what I needed to do to keep track of my numbers and taken my meds, but it hasn't been something I've allowed to hijack my life. I was told not too long ago that I'd likely kick the bucket of something else before ET. I've chosen to go with that!
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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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