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

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.

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!

I hope that somehow turns around. I just moved to 2x500mg three days a week and today I was really tired. Muscles felt like there was just nothing there It’s only been a week on this dosage but it’s definitely heavier the days after the two pills. I’m waiting still for my body to figure it out.

The bruising and bleeding seems scary I’ve not had that happen…. I’m just hopeful this or something else works and thinking about you to send some positive thoughts.

I have passed the 30 year mark now. Honestly, I feel really good at 69, so I don't stress about keeping myself alive forever and just enjoy the present. I stay somewhat active (when I have things I really want to do 🙂 ), I eat pretty much what I want to within reason and don't fuss about the bathroom scale at all. I read a lot and travel a lot. I retired from cooking because it's so time-consuming and messy, coexist happily with dust on my furniture, spend lots of time finding relatives via genealogy MyHeritage, laugh a lot, watch BritBox series, fiddle with my Nordic folk music group, etc. Why obsess about health? Worrying gains me nothing! But that's me!!!!

A year later now, how are you doing?

Mini-strokes, in simple terms. My left hand started feeling tingly and numb and sort of floppy. I had that a few times, so I had some brain scans. I fairly quickly went back on HU.

I also went through a period worrying about the safety of HU. However, once I tried going off and had a series of TIAs while off HU, it didn't take me long to realize I'd be better off taking the HU and not risk a debilitating stroke. That's been 30 years taking HU, and I rarely even think of it--my life is pretty normal for a 69-yr-old.

I've only been on HU for a year, 2x 500 mg. Gives me a lot of fatigue. I can't function until the afternoon. I take it for ET. I had no symptoms other than high platelets coming into this. Now, I am tired most of the time. I also have dry skin, dry eyes, bruising, and bleeding gums. I was an active 69 year old when diagnosed a year ago. Now, I am a tired 70 year old.

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.

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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