Welcome

Thank you for stopping by on LivingWithFH.blogspot.com. I intend to keep this blog updated with notes on my personal journey into living with familial hypercholesterolemia. The blog will provide my first hand report on what this disease can bring about, what the doctors tell me, and how life is different, in my case. Although other sufferers of hypercholesterolemia might find helpful information on this blog, it addresses only the familial, or the inherited kind.

I also would like to keep the blog updated with links to researches that are constantly being done on cholesterol, atherosclerosis, and heart disease, new findings in this disorder, as well as other support forums (chat rooms, other blogs, etc) for people like me. I have been looking for a place that offers all this, and there are not many.

I also encourage you, the reader, to post comments, questions, and your own links to what you find on this topic. Due to unwelcome spam and other unwanted traffic, I will need to approve all the comments, but please post them nonetheless.

In the first few blogs, I will talk mostly about my history, how the disease was diagnosed, when I was 8, what my cholesterol levels were at the time, and how I managed it during the following 17 years while living in Romania. The drugs but mostly the research were scarce there, and every doctor visit was a disappointment – there was no hope.

Once I moved to The States, the roller-coaster of trying any drug therapy known to the medical world began. In a lot of ways it was a blessing, and in a lot others, a curse, as well.

As the name of the disease suggests, this is a “familial”, or “inherited”, or “genetic” disorder. In this particular case, lifestyle choices have little to no effect on how the cholesterol level and its consequences behave. And because it is genetic, there is no cure for it. So, whatever treatment you’re on, it will have to last for as long as you live. I will address all these statements in the blogs to come. There are controversies in the patient world that suggest that heredity has little to do with how this disease behaves. I will give you my own account.

I will get more into the details of what the cholesterol levels mean in the following posts, but just for this brief intro: according to the American Heart Association, the “desirable level of total cholesterol should be up to 200 mg/dl. My total cholesterol was over 700 mg/dl when I was 8. It is over 300 mg/dl when this blog was started in 2011.

Because of progress in research, a new kind of medication has been good for me, the PCSK9 drugs, and that has brought my numbers down to 198 mg/dl, when used in conjunction with statins and zetia. 

I found out in 2017 (36 years after the first diagnosis) that I have HoFH, the more rare and more severe type of FH. Up to that point, the information you find here will be on FH, generally. From that point on, I have included my journey with HoFH here, given the new diagnosis and I am following some of the research and resources available for this specific type of FH, as well. 

But despite all the grim blood test results, and all the prognoses that a heart attack or a stroke might be around the corner, in months, not years, I have managed to live for almost 36 years free of any major coronary or brain events.

It has been a journey of hope, a celebration of life, and a lesson in self knowledge, as well. It’s been a trip that has made me, in a way, the person I am today – there is not one day in my life that my condition is not on my mind, and yet, I believe I have had a full and “normal” life, in many wonderful ways.

I thank you all, in advance, for your presence here, and I encourage you to please send me all your thoughts, ideas, suggestions on how I can improve this site, over time. As I tell my doctors: I am in this for the long haul.