I’ve been vacationing in the Pacific Northwest over the last several weeks, and in the midst of family joys got this additional great news. A drug specifically designed to treat my type of cardiomyopathy, has just been released on the market.

Tafamidis (Vyndaqel) prevents the continued accumulation of amyloid in the heart muscle. It doesn’t undo the damage already done but it seems to stop its continued production. Like most new drugs for serious diseases this one is also prohibitively expensive ($250,000 a year). 

I don’t personally know anyone who can afford even the co-pay, that insurance doesn’t cover. Fortunately, there are myriad Foundations established to assist patients, and with their help, I just started taking it. Who knows how much longer it will allow me to live, but longevity is less important to me than the quality of my life still remaining. My heart is failing, but I’m coming to every day engaged in the moment, and for the most part joyful. 

A friend said to me, that I seemed to be handling my situation with aplomb. I don’t hear that word used much anymore), it means to be poised, collected and composed. I’m not sure that’s the right adjective to describe my current status; I mean there are surely times when I’m collected and composed, but there are also times when I am filled with uncertainty, and the awareness of my gradual losses. I don’t hang on to those lamentations, not because I’m cool and/or self-assured, it’s more because I’m growing reconciled with my fate, and moving down a path I was always meant to follow.

I am writing, learning, teaching, and playing, and surrounded by a loving family and community who keep me grounded in the present. I got this pink slip, but I’m still punching my time card every day.