The title needed quotation marks because it was suggested by
my husband after my latest appointment with my cardiologist. I hope after
reading this post you will concur with its appropriateness.
As we all know, managing FH is a journey of discovery. You have
the condition, and then you have the complications. You have some treatment and
then you have some side effects that also need to be managed. Some drugs work,
some don’t, some drugs work for a while and then stop. And then they need other
drugs to help them up and then their little helpers stop working … After 20+
years of managing this disease with drugs I am still puzzled about what does
work and why. And about what makes drugs (or other things, like diet, my body
and its hormones and its natural disposition) stop working with me to keep the
numbers low. I am always learning and always starting over, it seems.
I know that a lot of people who are just now being diagnosed
want to know the magic trick or cocktail they need to be on that will ensure
they can manage the numbers and prevent events. But the truth is, as I have
found it: there is no silver bullet. It’s what works for you, and that answer
can take a while to figure out. Just make sure you get good doctors that
understand the disease and why and how it should be managed differently than
regular “high cholesterol” and try what is available out there (there are lots
of options now!), and learn your body along the way and know what works for you.
That would be my advice.
And with that, yes, I am myself still looking for that magic
trick that would make my numbers normal – which has happened just once since I
was first diagnosed 36 years ago. As you can see below, somehow, and we don’t
know why, my total cholesterol and my LDL (which is more important) were within
normal ranges once in September 2018. But since they, they have been going back
up. Since January of this year, we have been trying to figure out why this is.
In the words of my cardiologist, “I wanna know what happened to those 60 mgs of
LDL! I wanna give them back!” – but we have not managed to find a reason for
this.
We know that the numbers dipped to normal levels only after
we added the Praluent. So, naturally, we think the Praluent might also be
responsible for the numbers going back up, somehow. We went as far as
contacting the Praluent manufacturer, but we have not gotten very far with them.
In the beginning they said there is no known evidence that a patient could
build resistance to the drug, but the second time (more recently) when we
contacted them, they said there is a very small margin for resistance (I cannot
remember if they said there is 0.3 or a 0.03% chance of building resistance –
is what their research shows. They said “it is not zero, but it is very small”.)
The course of action now is to go to the clinic and have the nurse inject the Praluent
instead of me doing it on my own, just to ensure that I am administering it
correctly. They also asked me where and how I inject the drug, and I told them:
I have been doing it the same way, in the side of my thigh, alternating legs
every 2 weeks about the same time of the day for 3 years now. Now, the
manufacturer rep said it needs to be injected in the top (not side) of the
thigh, so we will try that for a while and see if the numbers change. Again, a
word of caution for folks out there: the cardiologist and the manufacturer both
told me again that the drugs work best when injected in a muscle and not in a fat
tissue; so, not in your stomach, but in your thigh or upper arm, where there is
more muscle. At least, this is the advice they gave me.
I am not aware of any other changes that could trigger these
numbers to go the other direction for me, and the cardiologist did not suspect
anything else to be the culprit. So, we will see. Maybe it’s time to try
Repatha instead?! Not sure …
In addition to this journey, there is the parallel journey
of making sure that my heart and my arteries stay healthy, or whatever “healthy”
means to me. So, to ensure that, the cardiologist ordered for the first time
ever a complete body scan (with contrast) of all my arteries. I say “all”, but
I mean only the arteries in the trunk of my body, if you will: from my neck to
my pelvis – so, no brain, and no legs.
His idea was that if the damage in the arteries in my heart
was so severe three years ago when I had my surgery, then he is wondering about
the status of the rest of my arteries in my body – is there an aneurism
anywhere else like I had in my aortic arch? Are there any blockages that need
to be opened up like the four that needed bypassing in my heart?! What exactly
is going on?!
The test showed, as you would suspect, atherosclerotic
disease of various severities pretty much in every artery scanned. Very few had
mild disease, but most of them had moderate, or moderate-to-severe disease. The
worst (moderate to severe) are my thoracic and my abdominal branches of my aorta,
where “the infrarenal abdominal aorta in particular is severely narrowed down
to a minimum cross sectional diameter of 0.6 x 0.6 cm just above the takeoff of the
inferior mesenteric artery.” I am told that this diameter would be equal to
about a 70% blockage. The severity seems to match the one in my carotids, which
is between 65-75%. Just like the carotids, the course of action here is to do
nothing right now, and just to repeat with an ultrasound every year and ensure
that the blockage does not become bigger. If it gets closer to 90% then surgery
for a graft or a stent might be recommended.
The doctor said that if this blockage would cause symptoms, because
of where it is located (right after the aorta leaves the kidney area and before
it splits to go to my legs), I would notice a sharp pain in my buttocks. I don’t
notice that, but I do have pain in my calves when I exercise – he said he doesn’t
think that pain is related to this, because my buttocks would also hurt in this
case. Hence, the title of this blog.
So, as of right now, these are the things I need to watch pretty
much every year for as long as I live:
- Cholesterol numbers (every 3-6 months, typically, but we’re doing them more often now because we’re trying to figure out why they have gone back up)
- Liver enzymes (every 3-6 months)
- INR (weekly) for the health of my mechanical aortic valve
- Heart echo (yearly)
- Carotid ultrasound (every 2 years)
- Thoracic and abdominal aorta ultrasound (every 1-2 years – this is new and the cardiologist will confer with a vascular surgeon before he sets a definite schedule).
Of course, at any given time when a new symptom comes up, he
orders other tests, as well.
Some might say that FH and all the complications that come
from it is a full time job. I prefer to look at it as a life style: it is part
of our bodies just as much as the color of our eyes. We, people who have it, learn
to incorporate all this knowledge and all the tests in our daily routine. We
need to know that along with vacation once a year, we need to make time for a
couple or three echos and 3-5 blood tests. Plus, daily medicine and a healthier
than average lifestyle. Knowledge is power and knowledge and taking advantage
of the medical developments out there will give us a healthier and fuller life.
None of us have control over the length of our lives, but I at least try to
have some control over the quality of what I have left.
I am grateful that we have the tools that allow us to know
and manage this disease. We can be mobile, aware, and do pretty much everything
we want to do in and with our lives. There are millions of patients out there
suffering from so many other afflictions that do not get this lucky.
Onward, all! It’s the only way …
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