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Amanda Thorpe


How could you possibly fail me? You’re supposed to be good to go from beginning to end, at least that’s what you come to expect and it’s certainly what they promote and imply if you do what you’re told!


I did, I did! I went to the gym regularly, I was a jogger, I ate healthy, and I only smoked lightly for a couple of years. From the age of 30 I was acutely aware of Ma’s heart problems, first heart attack prior to 50 and to date 3 heart attacks and a dead artery (if I have to hear about the creepy dead artery that she’s walking around with in her chest so do you!) so I was always determined that I would NEVER have heart problems.


Hey Amanda, how’s that working out for ya?


Should have been determined never to have an autoimmune/ vascular disease instead but then I didn’t know they ran in the family prior to having scleroderma. Sometimes I feel like I didn’t know anything prior to scleroderma and now I know lots of things I don’t want to.


Thanks to scleroderma I have myocardial fibrosis which put me into serious heart failure with a 2 year life expectancy in 2010. My ejection fraction was 32% (normal being 55-60%) which went up slightly in 2011 and according to my latest ECHO is now back to normal thanks to implantation of the biventricular ICD in late 2010. Clearly a good ECHO outcome, improvement is a great relief as I figured things would be bad otherwise, real bad, like “What wood would Madam like, oak or maple?” bad. If my ejection fraction had gone down/goes down despite implantation then “Madam wants maple.”


So I was trying to think how do I actually feel about all this? About ending up with the one ailment I worked hard to avoid, heart failure, which I will forever be in because without the biventricular ICD my heart no longer works. About having tests every year, ECHO’s, pulmonary function test, gastroscopy and so forth, the results of which could indicate coming disaster, or that it’s actually arrived, or that, hooray for you, you’ve dodged the bullet...this time. How do you feel standing on shifting sand? In my early days I used to misquote that well known scholar F Gump saying, “scleroderma’s like a box of chocolates, you never know what you’re gonna get”. Turned out to be true. I still don’t know how I feel about all this after 5 years and the thing is it makes no difference. You’re gonna get what you’re gonna get, hazelnut caramel or coconut chew!


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