Sometimes
I wonder: “What is purpose of seeking to feel better? Have I not
learned that I will never ever feel like I am running
on 100% capacity, firing on all cylinders?! My HoFH will continue to
do damage, my heart has had a major overhaul AND a heart attack.
There is never hope for really feeling truly healthy and truly at
full potential, as if I were a healthy person. So what is the point
of all the tests and all the interventions that doctors still want to
pursue?!”
And
then there is this other little voice inside my head that says “Why
not?! Medicine is so much more advanced than even 10 years ago. If
there are ways, and procedures, and meds, why not seek the best life
possible? Why not trust a doctor or two that do believe in the silver
lining?!” The trouble with that is all the risks involved, and all
the doubt, that despite all the advancement, I still have an
unbelievably broken body, which is irremediably damaged for good, and
forever, which will never ever run at 100% capacity,
even with the best care.
Let
me bring this in focus: I met with the second cardiologist since I
moved to NC. He struck me as somewhat of a bully, a rushed maniac
with a weird passion for treating hearts and somewhat of a bull in
the China shop. Definitely not a boring guy! He initially was
“guessing” based on what he has heard about my history (mostly
from my previous cardiologist's notes) that the biggest problem with
my heart is my AI (aortic insufficiency), caused by my (still)
leaking aortic valve. Although, just like my previous cardiologist,
he could not hear my AI (the leaking), he said the reason my blood
pressure sometimes has “no bottom” (or a very low one) is because
of the AI. He also guessed that my heart probably has fluid in it
because of this and this is why my legs swell up sometimes. He also
chalked the shortness of breath, the dizziness and other symptoms of
fatigue and slowness to the AI as well.
He
recommended a heart echo and then a nuclear stress test. After both
were done, he called me and the conversation went into a completely
different direction that before. He said “according to your echo,
your heart is good.” That's it! He didn't say why, and he did not
mention one word about my AI (which he believed to be severe before
the echo, just based on the notes he read and on my symptoms). He
said nothing about how badly my valve might be leaking, if at all,
and whether there is a concern even about the leakage at all.
He,
however, spoke a lot about the results of my nuclear stress
test: he said when at rest, my heart gets an adequate amount of blood
(and oxygen), and the vascularization is appropriate in my entire
heart muscle. However, when my pulse raises to even as little as 120
(my goal was to hit 150 beats per minute, but I started getting short
of breath and dizzy around 120, so they stopped the test), there is a
corner in my heart (lower left ventricle to be exact) that does not
receive blood at all. He said it's either a scar from an old heart
attack (my MI was localized in the same area he saw on the test), or
there is a blockage there that needs to be opened up.
So,
his number one concern now is to get to the bottom of this mystery:
he now believes that my shortness of breath, my dizziness, and all my
other symptoms of fatigue come because of this area of my heart is
struggling to work without proper oxygen.
He
wants to do a cath next to understand which is the cause: if the
cause of the lack of blood in that area of my heart is an old scar
from the MI, I am not sure what he can do for that, really. But if
the cause if a blockage, he wants to put a stent in to open it up.
After which, he wants me (like he said the first time he saw me)
“back in rehab”, because the heart has to start working better
after the blood flow is opened up. The first time he mentioned rehab
to me it sounded bogus, but this makes sense. Not sure what the
course of action will be if we're not talking about stenosis but
rather some other traumatic damage from my heart attack. He seems to
be pretty certain that it's a stenotic spot where maybe a bypass was
not done before, or where it was done and it didn't take. (have I
mentioned that this doctor guesses a lot?! He does.)
I
am, of course, not crazy about a stent, because that can also be a
liability (stents can clog, too, with scar tissue). A little voice
inside tells me also: “what is the point of all this? Can a stent
really make you feel like a normal person? Can any procedure ever
make you feel like a normal person? Of course not! So why add more
side effects and worries, when you can just cope, like you have done
for two years now, since surgery, and for 20+ years now since the
first sign of cardiac problems?!” But not doing anything to help
beaten heart (no pun intended) sounds just as crazy.
The
doctor wants me to come up to the 150 bpm pulse and keep going with
no symptoms for at least 15 minutes. But I have had angina before my
surgery for years. Now, I have had early fatigue and shortness of
breath after just a little bit of walking. Is the goal (for my age
and weight, height, etc) of 150 bmp really realistic?!
With everything that went on in my heart and with the constant abuse
of high cholesterol (which will continue), is it really possible to
hit the targets of a normal person?!
The
one thing that motivates me to really look for answers and for a
possible solution for getting my whole heart irrigated properly is
that my symptoms kick in even without extensive exercise. They kick
in after speaking for a longer period of time, or when I am nervous
about a seminar I am presenting, or speaking in front of a crowd. So,
simple things like these make me symptomatic. And to me symptoms
means more damage to the heart, inherently. The heart cannot be
healthy when it's struggling for air like this, when I do the
simplest things. And I don't want it to quit on me when, say, I need to
run across an airport dragging luggage during a short layover.
He
wanted to do the cath within a week from my test (it's passed
already), but personal conflicts for both me and the doctor have
postponed this till a month from now. He wants me to increase my Atenolol to ensure my pulse rate stays low. In the meantime, he told
me “not to go crazy: no jogging, no hiking steep hills, no pushing
heavy carts. Just keep the pulse under 100, he said, or lower, as low
as I can.
I
am planning to have at least one more office visit with the doc
before I go in for the cath, just to ask him all the questions I
still have about all the tests he has done and about his overall
opinion about my heart: some things that I knew I had from before
(like the AI) – how severe are they? Should we worry about them?
And also: is my heart ready for a stent?! What is the maintenance we
need to consider when that will be implanted? What are the steps to
take if I don't need a stent? If my heart is damaged otherwise from
the MI, is there any remedy for that? If yes, what is it?! Lots of
questions, still, as you can see …
I
feel sometimes like trying to see this doctor is worse than trying to
get approval for Praluent. You cannot get an appointment sooner than
6 months ahead. Now, because I am somewhat of an acute patient, I had
to beg his office assistant (his nurse told me she cannot schedule
anyone sooner than what the public calendar shows, and I have to work
with his personal assistant) to schedule the appointment at least 2
months after my previous one. When we do meet, he is incredibly
rushed and off to the next patient, so I have to really
come prepared every time, with written questions to ensure I don't
miss anything from what I want to know.
But we do what we have to do to get our answers, don't we?! A busy schedule, a rushed physician, or an inflexible insurance company should not stop us. Here's to resilience!
I
am very worried about what's in my heart, and I am doubly worried
that he has little time to really know what's going on. Maybe he's
used to this rushed schedule and to him is second nature to run off
from one acute case to another … We can only hope …
I
wish everyone smooth rides and easy questions. Much health and a
beautiful spring, everyone!
