The “En Garde” Life of an FH Patient

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Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

Happy New Year to all and here’s to much health, first. Here’s to everything else, second!

If you have read my blog before and if you are an FH patient yourself, you already heard me say this and you already know yourself that life with this disease is a constant checking in with your doctors, and a constant changing, adjusting of diet, medication, exercise, routine, etc … We always have some value to check, some artery to scan to see the progress of disease, a blood pressure, a calcium score to follow, or even new tests that we didn’t even start with when we started this journey.

Now, if you’re one of the “lucky” ones, like me, who has seen this disease affect other parts of your body, if you are a heart patient, or a fatty liver patient, or a kidney patient, then you have a full time second job to keep up with. But we all know this. I am just reiterating it for those who are new to it and might be wondering what it looks like.

But there is good news, you all! The good news is – if we do stay on top of these checks and appointments and scans and what not, we have a big change to a pretty regular life, otherwise. We live in a time where there is more and more known about FH and about what it can bring about if left untreated. We have places to research, we have The FH Foundation, and we have more and more medical professionals who recognize, understand and can manage it. Just remember this, too. The power is in the knowing, and there are infinite more places to find out information about it today than there were when I started 33 years ago in communist Romania!

Now, I’ll turn the focus on me and what the latest check-up has revealed. I saw my cardiologist in December. I did get the results to my blood tests shortly after that, but the rest of the tests that he ordered took a while. So I am posting this now so I can cover all the findings. I will have to give you a fair warning though and tell you that this might be boring. But, if you want to know the details of my every-day life, I hope you find something helpful here.

Before I saw my doctor in December, I had had a couple of months of really weird dizzy spells. I could be sitting at my desk, working, or on the couch, reading, and all of a sudden my head weighed 1000 lbs and the room started spinning. It is not like vertigo, it’s more in a heaviness and my knees sort of turn to jell-o. I mentioned this to him and he did several things:

  • he hooked me up to a holter monitor for 48 hours;
  • he also ordered a ultrasound of my carotid arteries (which we know have narrowings of about 50-69%);
  • he ordered an ultrasound of my abdominal aorta;
  • he reduced my beta blocker drug (Atenolol) to 37.5 instead of 50/ day.
He figured that if there is an increased narrowing somewhere I guess it could cause the symptoms (hence the ultrasounds), and if there is anything “electric” wrong with my heart, the monitor would tell him. The atenolol could be slowing down my heart rate too much which could also cause the dizziness … I guess that was the reasoning behind all those.

Well, the carotids are stable – still at 50-69%, which they consider not yet bad enough to do anything about. I am really happy about the fact that they seem to be stable for the past 4 years or so. Ever since my LDL dipped under 200 (which is still nor normal, but incredibly better for me), my carotids seemed to have slowed down the shrinking. Until then, every year they showed to be a little bit worse.

The distal abdominal aorta came back as narrowed as the last MRI showed – with a cross section of around 0.7 x 0.6 x 0.9 cm this time (I believe the normal diameter for a woman is around 1.7 cm). The abdominal aorta came out as less conclusive than the MRI showed it 7 months earlier, so because of this he is ordering an MRI next (but more about why that is needed in a second).

I reduced the Atenolol but for some odd reason, although my dizzy spells didn’t stop at all, my blood pressure started climbing right after I did that. I consistently got numbers like 167 over 59 and 165 over 55 and I felt even more dizzy and felt more heart palpitations than ever before. So, I had to take the Atenolol back to 50 mg/ day.

The holter didn’t show anything worth mentioning. Historically, though, the electrical function of my heart has been great. I have never had a-fib, and have never needed a pacemaker, or defibrillator, for a change!

Because of my blood pressure being so high lately, he is ordering this MRI of my abdominal aorta again. He wants to eliminate any suspicion of a severe stenosis before he does a nuclear stress test to look at my heart and before he medicates my blood pressure. So, those steps are next.

He also checked my cholesterol and my liver in December. My total cholesterol is up, slightly, as you can see in the picture below, but that is because my HDL is actually up, for the very first time in 5 years! I never quite buy the “eat nuts, they’re good for your HDL” talk, because I always think that fat is fat and your body doesn’t know the difference, but … I am here to tell you that the only thing I changed about my diet is the fact that now, I eat a handful of (very) dark chocolate – covered almonds once a day, almost every day (5-6 times a week). Now, the size of my hand is very small so don’t think that I am eating like a pound of chocolate almonds. It comes out at around 6-8/ day. This is the only change I made to my diet. Coincidence?! Not sure, but whatever it is, I’ll take it. I believe there is some research that says if you already have coronary heart disease and atherosclerosis the HDL does little to protect you against disease but I am pleased that the pesky LDL was not the one on the rise this time around.

In addition to all this, he checked the level of my lipoprotein (a) for the first time which is slightly high, although he commented that “not high enough to be an issue.” I have included my level below along with the normal range. As I am learning about this new fraction, this value does not change during your lifetime (except it can increase with menopause for women), and does not respond to diet, exercise or medication. So, it is what it is, I guess, for the rest of your life. Here’s what the wiki says about it: https://en.wikipedia.org/wiki/Lipoprotein(a).

I also like to know things like these just for my own education. Right now, there are no medications that affect this protein but it has been studied that it is one of the fractions that does contribute to CVD and atherosclerotic diseases. Maybe in the future there will be research that you could qualify for if you are one of the people with a higher value of the lipoprotein (a). All it takes is a blood test and you never know why it would be important to know.



My liver values all came back normal, thank goodness! I always encourage everyone who is on any medication for cholesterol to demand that doctors check their liver values, because you just never know how these medications affect the liver and you do want to stay informed about what is happening in the liver before it’s too late.

I went back to see my cardiologist this week because I am truly concerned with my blood pressure lately. We will follow up with an MRI of my abdominal aorta, like I said, and we’ll go from there. He wants to see my heart next but not if I have some sort of a severe stenosis in my abdomen. He believes my carotids look “clean enough” at 50-69% blockage, and he repeats what pretty much every other cardiologist has ever told me “when you are this young doing less too early is better than doing too much.” So, stents are not recommended for my age (almost 45) unless the stenosis is more severe than 90%.

He also checked my kidney values because the narrowest portion of my abdominal aorta is my infrarenal aorta. The kidney functions are fine except my BUN and Creatinine which are incredibly low. He did not comment on that at all (and from experience none of my other doctors do), but I researched this and one of the reasons they can be low is lack of protein in the diet. This would make sense, because I am almost 100% vegan and I eat about 1-2 servings of fish weekly. I do eat beans and nuts, but possibly not enough?! So, my next step is to incorporate more protein in my diet somehow. This will be a tricky business because protein messes up my INR level which is important to stay between 1.5 to 2 for my mechanical valve to be happy. Like I said: constant checking, adjusting, tweaking … and …

Onward we’ll go. I will probably follow up with one update after all the other tests are settled and we have stabilized or are on the way to stabilize that naughty blood pressure.

As they say in the heart patient world, folks: the best to you all, and keep ticking!

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https://livingwithfh.blogspot.com/2020/01/the-en-garde-life-of-fh-patient.html

Blog Post by A.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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