Jean's Profile

Updating my story because it has changed a lot since I first got on here, when I was looking at repair for moderate/severe mitral valve regurg. Since then, I've been diagnosed with essential thrombocytosis (aka thrombocythemia), a very rare blood cancer that raises clotting risks. Thanks to the generosity of the people on this site, Adam's book (and having cared for my mother during and after AVR), I have a pretty good handle on how recovery after heart surgery might go, though the cancer complicates things. Whether surgery would help me live longer or (at my age, more importantly) improve my quality of life is still to be answered by my cardiologist working with my hematologist. My main symptoms are fatigue and lethargy. Both the cancer and wonky valve cause this. So fixing the heart problem may not make me feel much better. I started exercising more and watching my diet in 2014, when I got the word my MV was approaching severe levels. Turns out that's good for ET, too. And I've been able to keep my BP and glucose levels normal. That helped me lose a little weight which got rid of a lot of back pain (I have severe scoliosis.) So yay that! I also take low-dose aspirin for clot risks. My blood gets checked every three months to determine if/when it's time for me to start oral chemo. There's no cure for ET and no predicting it, either, though on average I have three to six more years before I'd need to start taking lifelong oral chemo. (Inspired by how much this blog has helped me as a heart patient, I write about and report on ET at ethrombo.blogspot.com) So it's one day at a time for me.