My Journey with FH and Heart Disease

Four Year Anniversary

Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

In some ways, 4 years seems like yesterday. And in most of others, the past 4 years since my open-heart surgery feel like a lifetime. I am not the same person I left on the other edge of that precipice. I never will be. That person is in my past, maybe even dead, and this new metamorphosed person is here now, scars and all, to tell the story of what was and what is here today. I do know one thing for sure: if it were not for that open-heart surgery that old person would not have made it alive to today. And there would not have been a new one.

Every year, I recap what happened: the aortic arch was repaired and cleaned out from the multiple levels of calcification; the ascending aorta was replaced with a Dacron graft; the aortic valve was replaced with a mechanical On-X valve; four coronary arteries (including the LAD and OMB, some of the larger ones) underwent endarterectomy (this is plaque removal) and bypasses. A week after the big surgery, the heart attack followed.

Three months of cardiac therapy and pretty much bed rest followed. Three more months of not being myself, tired all the time, having visions, tinnitus, speech lapses, left arm and left leg neuropathy, labored shallow breathing and sleeping sitting up followed after that. After about a year, I started getting used to my new normal which still involved some degree of all these. Also after about a year, I started flying again. After about another year, I started flying by myself. One baby step after another, I made it to today. I never count the days that passed except on my anniversaries. I am just glad I am here and I get to write this. I am grateful for every breath, every tic-toc, every full minute that slips in the past.

New symptoms every so often, old symptoms getting better or disappearing, old drugs and new ones are my every-day routine, but then again – they were part of my old life, too, so not much to get used to there. Some old issues disappeared but I traded them with new ones.

New and old tests show that my valve is doing great. Most of my bypasses are closed because the cleared arteries are working fine on their own. The bottom part of the heart is a little weaker than the rest of the heart but with an ejection fraction of up to 65% I am almost as close to the old ejection fraction as ever (it was 70% before the surgery). The blood pressure continues to be very atypical, in various ways, but there are yet more tests for that to follow. Some of the neuropathy still exists in my left hand but my leg is 100% better.

My breathing is mostly better, except with exertion. All in all, I am lucky. I work full time; I travel anywhere and any time I can. I really cannot ask for more. The best present I was ever given in my life was these full years after that surgery! Every single minute of every one of them.

Every year, on this date, I read my operative report and beyond the awe of what a body can get through and survive I find at least one thing that makes me chuckle.

This year, I found these statements which refer to a type of surgical clamp. But if you’re not in the know … they sound hysterical, I think: “The bulldog was released and hemostasis was satisfactory. The bulldog was reapplied.” That just made me laugh out loud. Just the visual of the bulldog, the dog … who “was released …” Must have been a friendly bulldog, since it didn’t kill me.

Looking forward to tomorrow and every day after, but I have no expectations. Just enjoying every minute of every breath and being filled with gratitude.

One baby step after the other – the only way I know how to do it …

This blog is reprinted with permission from A. Wilson. To view original post visit:

Blog Post by A.W.

FH Advocate for Awareness - Alina W. About this Blog

In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.

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