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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
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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That's amazing and so happy that you've been so active and just making it happen. I hope to emulate that as well as just keeping it to ourselves as I also don't want to be the "cancer person" and then have everything come up and ask "are you alright" every time they see me. A great book actually is "The mindful body" which basically agrees with your mindset and shows studies on how right you are.
For my heart attack the doctors say they can't ever know "for sure" but they say ET was "certainly a contributor" to the heart attack. I had a "widow maker" with a 98% block on my LDA which clearly "caused" the heart. The debate is what caused the blockage, how fast, etc. I had a calcium scan then and another ~3 weeks ago and have a 0 calcium score and my cholesterol is basically perfect according to the books/numbers...The going theory is that fibrous and fat can build up in arteries since you are 8 years old and even with healthy living it naturally occurs. Apparently stress (work, lack of sleep, etc) can make that worse. I worked 60-80+ hours weekly from ~2005-2020. So then add that I've had high platelets since 2012 and they think it just built up despite good numbers. So they say ET was a "contributor".... but if I was living a more balanced lifestyle it may never have happened.
Overall I'm very inspired by your experiences and have shared your story already with my wife, mom and friends. I hope to see more from you and others on this connect community as we go.