I
follow a number of forums and pages dedicated to FH and heart
disease. Let me just say first that I am grateful that they exist.
Back when I started this blog, there was no information out there
about our disease and no way to reach out and meet other people like
us. For this, I am deeply grateful. And I have spoken about this
before
(http://livingwithfh.blogspot.com/2018/09/from-obscure-past-into-bright-future-on.html)
Every
once in a while I see a new person on these platforms that was newly
diagnosed. One of their first questions is “if you do nothing about
FH, would you automatically have any symptoms or develop any
complications? Would you automatically get CAD or other arterial
diseases?” And to be honest, I never know the absolute answer to
these questions. I think doctors and other medical professionals
should answer those and should back up their answers with research.
If
I were to answer these questions for new patients myself, I can only
speak about my own story and about my family's history with FH. In
our
world, you do
get complications, symptoms, as well as CAD even when you do
things to control the disease. That is for certain. That is our
certain.
This
year's been an odd one for me, with trying to understand and manage
several complications. First, after two years since my heart surgery,
I went back to cardiac rehab this year, to try to build some strength
back into it. A stress test revealed that the bottom half of my heart
(the left ventricle, really) gets very little if any oxygen during
exercise. Because of this, I still have angina when I exercise which
prevents me from going for a longer amount of time on the treadmill
and from truly performing any cardio exercise. The idea is that with
more exercise (as much as I can tolerate) more young blood vessels
might appear to supplement the circulation of that part of the heart.
The story of my cardiac rehab is a long one and maybe one day I will
sit down to write it all. For now, I can only say I am trying hard to
exercise regularly, but there are still limitations that prevent me
from going so fast or so far.
Because
my heart is somewhat under control, I had some time this year to
address other complications that I have been living with for years
now. One of them is the elevated enzymes of my liver as well as pain
in the liver area. Two ultrasounds and a GI appointment later, they
are still working on a diagnosis, but preliminarily they think I have
something that they call tumefactive sludge in my gallbladder as well
as non-alcoholic fatty liver disease. There are more tests to be
done, but these are the first 'guesses' of the GI doctor. I asked him
what could have caused this (they both lead to scary things like
gallbladder cancer and liver cirrhosis) and the answer for both was
“I am not 100% sure, but I think your Homozygous FH makes the most
sense.” Like I said: we're still looking for a certain diagnosis,
but based on my symptoms and enzyme levels, this is the deal for now.
Also
after many years, I finally found the time to remove a lipoma from my
neck. I know that non-FH people could get lipomas, too, but the
amount of fat they removed from my neck is unnatural, in my opinion.
It was more like a quarter pound of fat than just the size of a mole.
I have had xanthomas removed twice before, and the contents of this
year's lipoma looked very close to those, although the look under the
skin was different than those. I cannot help but wonder if it would
have ever gotten this big without the FH.
These
are just some of the new things I have managed this year, alongside
my existing complications that I have managed for many years now: the
heart condition, the carotid stenosis, peripheral arterial disease.
And all these have happened with having been on Statins for 20 years,
Zetia for 10 and Praluent for two.
Like
I said before: this is my story. Every one of us has a
different kind of FH and a different body we're fighting it from. I
am sure there are some people out there who are lucky and never
experience any of these symptoms or complications, and are maybe
considering not doing anything to try to manage this disease.
However, from what I have seen myself and from what I have seen in my
family, I am not going to take any chances. Yes, my life is not very
easy even with treatment, but I cannot imagine how much different,
how much more difficult would it have been have I done nothing. Or
whether I would have been alive today.
In
the closing of this year I hope, as always, for much health for
everyone. I also wish everyone good doctors and teams to help them
understand their specific condition and navigate the murky waters in
compassion and tender care.
Happy
New Year, everyone!
