← Return to People living with ET and taking Hydrea: Anybody setting records?

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@johngrudnowski

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.

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Replies to "That's amazing and so happy that you've been so active and just making it happen. I..."

I think you were just working too dang hard!!! 🙂 Slow down, chill a bit, lie back in the grass and study the clouds, balance that lifestyle as much as you can. I used to be a Type A busy person, but the brain aneurysm pretty much put a stop to that. Since you've survived a widow maker, hang around with your wife and have fun as much as possible!!!! No sense tempting fate twice! ET....forget about it (within reason :)!

My husband and I had a great trip to Norway in the fall, meeting a lot of my DNA relatives I met through MyHeritage (I got a free 23andMe DNA test and membership because of donating a lot of my ET blood to Mayo for research) and became penpals during COVID. Now THAT was a great time. There are always silver linings to having rare blood!