I still remember the day back when I
was in college when one of my medical school friends exclaimed “That
is SUCH a cool disease!!” when I told him I had FH. He was studying
to be a general practitioner, and he just thought this disease was so
complex, that allowed him to know the human body like no other
disease. He saw me as an opportunity to learn medicine and see the
dependencies in the body as a whole, not just in a slice of reality.
Unfortunately, there are less and less
people in the medical world that I come across with that find this
disease “interesting” if they even bother to learn anything about
it at all.
It's been years (at least 12 if not
more) that I have found a general practitioner (PCP, family doctor,
internist – call it what you will) that truly understands FH and
tries to keep me healthy in its context. As of late, they take a step
back and say “oh, you gotta see a cardiologist” and that is that.
They don't even read my list of medications and they seldom ask about
other problems. They treat me, at that point, as “whatever is wrong
with me must be FH and they're not qualified to fix it”, or so it
feels.
I say this because after about 3 years
with the same PCP that never did one physical on me, or did any blood
tests other than lipids and liver panels at my request, I have
decided to switch my main doctor again. I asked around in the clinic
that I go to for my heart and other specialists and they sent me to
this other practice in town – huge inconvenience, because I wanted
all my doctors to be in one clinic, and I chose the biggest one in
town, but I failed to find a good internist or family doc there. So,
I took the plunge and went to the recommended practice.
To the new doctor's defense, he did
order a huge amount of blood tests, even before he saw me, for my
physical. During my visit, he gave me a hard copy of the results and
of course all my cholesterol numbers are high, so he had written a
note next to them: “Tried diet? Exercise? If yes, what RX?”. Now,
if he had bothered to read through the 10 page form I filled out, he
would have seen my health history (it contains FH, as you'd expect),
my family history (you guessed it again!), the complete list of
medications I am on and the amounts for each, so he would have known
right off the bat (I hope!!) that he's dealing with an FH patient.
But that's about all they are trained to see for a high cholesterol
patient: diet and exercise - which is fair, but for the love of life,
read the whole profile on the patient before you walk
in. With as many doctor's appointments as I have, I rarely understand
the purpose of us filling out so many forms, and spending hours with
the nurse going over our history. The doctor never uses those notes
for anything at all.
He asked the same questions of me, as
he scribbled on the blood results paper, and when I told him I have
FH, he cut me off with “well, I am going to leave you be in the
care of your cardiologist then”.
I had questions about other conditions,
for him, like my low vitamin D, whether I should take CoQ10 or not,
whether I should take any other supplements for my heart to stay
healthy, also about my continuous hives – but I felt, just like I
felt before, many a times with many a general practitioners, that
since I uttered the words “FH”, he was going to screen save me
and listen to nothing else. When you tell them about this disease,
it's like the kiss of death to them – they stop having any other
professional opinion about anything else. He had no opinion on the
vitamin D nor anything else I asked. I had other concerns, but I
decided to drop it.
Like I said: I did have, in the past,
generalist practitioners that questioned my medications, they added
more, they changed doses, and they were also checking for other
potential risks of my medicine, they recommended tests, to see how
much damage has been done from my cholesterol, etc. But I have not
had this experience as of late. What's more, they never want to treat
anything else, because … who knows, maybe everything else that is
wrong with me is because of the FH and they let the cardiologist
figure that out?! I have no answers here. Just a bitter taste.
So, it makes me wonder: what changed in
the medical world for the general practitioner to be so terrified (or
dare I say, unprepared) of treating a patient as a “full
spectrum” of health concerns? I know they teach the whole body and
its various afflictions in medical school, and I know some general
doctors paid attention and have the ability to treat everything under
the umbrella of an existent disease. But why are these people so rare
nowadays?!
My cardiologists have always been top
notch about FH and about the effects it has on my body as a whole,
and my heart in particular. The fact that I got great heart doctors
happened simply by luck, I had no personal referrals to them. I have
always been pleased with the care I received from them. But they
don't know everything, as their specialty is
the heart. The generalist doctor, in my mind, is the “everything”
doctor. But those have been a disappointment in my recent past.
I told my husband I'll give this new
doctor a chance for at least another year, but I feel like that is
even generous given the first visit. His goal at the end of my
physical was to “recover from heart surgery and report back in 3
months”. Hmm... yes, that is the goal for my cardiologist, too, and
for my surgeon, but … I exhaust my arguments.
I (and we) have no choice but to be
tied to medical professionals to maintain my (our) health. But if I
have one wish, one request from the medical “gods” out there, is
more education. More education, and info sharing between all the
specialties out there, about all the diseases (at least basic
knowledge). I wish when they all get together for their yearly
conferences, there was one forum where they would all share and get a
deep understanding of drugs, lifestyle, family history as a composite
spectrum of facts for each patient, and I wish this would render them
to not be afraid to come to the healing chair with us, the patients,
and share what they have learned. It would help us so.
On another note … like I mentioned,
he did do a very extensive list of blood tests. When he did these
tests, I was after a week from my first shot of Praluent. I have read
in many articles and even my cardiologist said that you can usually
(he said it with caution) tell that the Praluent is working even
after the first shot, “in most patients”. Well, here are the
numbers from April (after Praluent – last column), and the before
last column will show you the numbers from March (before Praluent).
Evidently, it was not working for me, yet.
I have since taken a second shot of the
drug, and I am getting my values checked again in a week, prior to my
appointment with the cardiologist, who of course was the one who put
me on this therapy. I will report back with that finding, then. For
now, insert your own disappointing tune here …
Hope everyone is finding true
compassionate care and knowledgeable help out there. It makes all the
difference in the world!
No comments:
Post a Comment