Cholesterol and Heart Health Update

Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

My cardiologist is a funny dude. He keeps telling himself that I only need to see him every 6 months now, and then he can’t make himself do it: he rescheduled me for 4 months again. I guess some of my symptoms and the recent test results made him nervous?! But let’s not get ahead of myself.

This past week, I went in to see him after 6 months (since last November), which was the longest hiatus between two visits since my surgery. For the next appointment, he wants to see me in 4 months.

We looked over the new cholesterol numbers which are overall good, as shown below.


You will notice that a couple of things are still off, though: the LDL (“bad” cholesterol) is a little high the HDL (“good” cholesterol) is too low as a result of the latter one, the cholesterol/ HDL ratio is still high He is not thrilled with these numbers, although I am over the moon with them. If you don’t remember, my LDL used to hang out in the 400’s for years. To see the total cholesterol at NORMAL values is something I have not hoped to see in my life. But here it is.

If you want to see what drug and exercise regimen I currently am on, please visit this page:

He talked to me about this new drug (also an injection, like Praluent) which is now in clinical research. It has not been approved yet, but he wants me to do the trial, to get that little bit of LDL down and that HDL up. I told him I would like to read about this new drug, but I made no commitments so far.

We also talked about my heart health. My blood pressure is still on its own internal roller-coaster. It can be as high as 150 over 50 one day, and as low as 110 over 35, another. Either way, the gap between the two numbers is what worries me. And the cardiologist. He still thinks that I have aortic insufficiency which is what he believes causes the weird blood pressure. This could also be worsened by the new aortic valve which is still a bit leaking (‘mildly’).

I have a couple of new symptoms, too.

I feel what I call a “claw” in my chest, over my heart almost daily. I think it might be in the chest wall, but I cannot be sure 100%. It feels like a sharp claw that just grabs hold of my chest. No idea where it’s coming from. It does not feel anything like my angina which I had often right before the surgery. This is very different.

I still wonder if over a year from surgery now, my nerves are just now coming back into my chest wall, and I can feel more what went on in there. It just feels weird. The doctor did not seem concerned about this symptom and he said he could say positively that it is not heart related. He said it could be surgery related, but not heart related.

Another newer symptom is that my feet and legs seem to swell quite badly some days, especially in the evenings. I had swelling before, but it was very rare. Now it seems to be a pretty regular event. The swelling is painful, and I cannot quite pinpoint what causes it. He did a blood test for this, which is supposed to see if your heart is under stress, or to indicate whether you are in heart failure. The test is called a BNP ( The normal levels for the BNP are between 50 and 100. Mine came back as 285. Always the overachiever, of course.

I am really worried about this, because coupled with the weird blood pressure and the fact that I tire easily when I exercise even a little bit, I am wondering if my heart is working right.

He did not seem to worry about this number, either. He said the value of 285 is “in no man’s land”, and if the number would have been higher than 400, then, he would have known for sure that the heart is under severe stress. This number just shows, to him, that I have either aortic insufficiency, which he already suspected, or that my heart is still under the stress from the surgery last year. Either way, this is not why my feet swell up and this is not high enough to indicate heart failure.

I am trying to learn more about this test just because it puzzles me that it’s so (seemingly, to me), high. If they give you a range, it must mean something, right?!

I have read that severe infections can also elevate the BNP, and I am currently trying to heal a stubborn UTI which seems to resist antibiotics, so I wonder if this threw off the number some, too. I have no baseline for this number, so I am not sure what it was before my surgery, or right after it. He said he will repeat this test in four months, when he sees me next.

Till then, continue with life as usual, I guess.

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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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