Growing Up With FH
Unlike many people with heterozygous FH, I have known I had FH for almost my entire life. My paternal grandfather died from a heart attack in his mid-30s and by the time I was born and my dad was 30 he had already been diagnosed with high cholesterol and it was assumed that it was a family trait that could be passed on to my brother and I. My parents decided to wait until we were out of elementary school to be tested since they had decided not to change our diets or medicate us while we were still actively growing. So right before I turned 12 I got tested and was, unsurprisingly, diagnosed with FH. My brother, by the way, tested normal. This was shortly after my dad had quadruple bypass surgery in his mid-40s.

Initially I was put on the horrible chalky drink that was the main medical treatment for high cholesterol in the mid-90’s. Rather than drink a tall glass of chalk before every meal I started skipping meals. That, combined with a new fear of cholesterol in even the smallest amounts and the usual hormonal and social brutalities of middle school led to a brief experimentation with eating disorders and, ultimately, a few years of relaxed dieting and no medication.

Once I was in high school, statins had become available and until I was out of college I was on high doses of a statin which mostly kept my levels in check. Once I was off my parents’ insurance, though, I couldn’t afford name brand medications and had to switch to a different statin since the one I had been taking wasn’t available in a generic version. On this regime my levels went back up to the levels they were at before treatment (287 total/258 LDL).

Now in my late 20’s I am off my statins once again as I try to get pregnant. It is recommended that you stop taking statins as soon as you start trying to get pregnant (or, ideally, a few months beforehand) and since I am also dealing with infertility that means that I’ve now been off my statins for three years.

Because I was diagnosed at a young age I don’t actually remember what it was like to *not* have FH. It’s always been a part of who I am and how I plan my life. I’m very lucky that my generation has so many options as far as medications which are relatively pleasant to take without too many side effects and surgical procedures which are increasingly safe and noninvasive. Everyone has to die of something, eventually, I’m just unusual in that I know that the most likely cause of my death will be heart-related (assuming a tragic accident doesn’t take me first!). But with the advantages of modern medicine I don’t have to worry about a heart attack claiming my life in my mid-30s like my grandfather or even having to have major heart surgery in my mid-40s like my dad. I very well may need surgical intervention at some point in my life but there are so many things that can go wrong as you get older, it would be foolish for anyone – irrespective of their cholesterol situation – to assume that they could make it to old age without some sort of health crisis. At least by being diagnosed early I’m able to prepare and plan, and use medications to delay heart disease if not completely prevent it.

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