Good morning, @nohrt4me I hope you won’t take too long of a break! ☺️ I think I can speak for all of us in the group with how much we truly value you sharing your life experiences with ET and well, just life!

I’ve said it before here in Connect, but I like to think of us all sitting around a kitchen table having our morning beverages, snacking on coffee cake, hashing out the good, the bad and the ugly of whatever life is tossing at us. I grew up with my mom, auntie and grammy talking about everything under the sun around that table... Some days it was nothing but whining and blue smoke. LOL. Other days, there’d be resolution or commiseration or a 3 tissue box discussion over loss. And just like the kitchen table the conversations in some of the discussions do veer off topic.

I know you are hoping to get responses from other ‘members who have ET with the CALR mutations and the impact long term. To get a better understanding on the potential progression of the disease. Give it time, they will find you.
In the meantime, this discussion, even though it zigs and zags, is valuable to the other members who maybe are new to the site or to ET and will appreciate the openness, honesty and vulnerability of the conversations here.

I hope you’ll rejoin the table soon…I’ll bring the coffee cake. ☺️