Two
years ago, right before Christmas, my cardiologist at the time called
me to share with me the results of my latest yearly echo. Things were
starting to get worse. My aortic valve was still shrinking, and it
was 1.1 cm2 in area now. I remember his words: “I am not sure when
you're going to have surgery, but if it dips below 0.9 cm2, it will
be time. You're very close to that.”
My
aortic valve was born healthy, but years of calcification from FH
caused it to collapse and shrink and become dysfunctional.
A year
went by, my cardiologist then retired and referred me to a new one.
So, last Christmas, the new cardiologist calls me with the yearly
echo results, around December 20th
and says: ”It's time. Your aortic valve is now 0.4cm2, and we must
operate to replace it as soon as you can. Don't wait for longer than
3 months. Tops.” I requested a repeat of the echo just to make sure
they measured right. The repeat echo was done on Christmas Eve of
last year. The second echo confirmed the findings: the area of the
aortic valve was too small to be deemed safe, so surgery was
imminent.
I am
sure a lot of you who have been faced with heart surgery can relate
to what was going on in my heart (literally and figuratively) around
Christmas last year. I was scared. I was in a lot of ways hopeless
and very, very afraid. I live in a small state (barely 2 million
people), with very rare good medical care. I didn't know where to go
and how to ensure I'd have the best surgeon, the best nurses, the
best care possible. I didn't want to travel for this surgery, because
I wanted the people who operated on me to be close by, during my
recovery. I was terrified. How I didn't go into the abyss of some
sort of depression is beyond me. Christmas and New Year were bleak
last year. I know I was supposed to be hopeful, and part of me knew
this was coming for most of my life, but this was right in front of
me, staring and in the way – I could not divert it or go around it
any longer. This was it.
When it
was finally time for surgery, they found out from an angiogram that
my heart was even in rougher shape than they initially thought: on
top of replacing my aortic valve, they have repaired my aortic arch
as well as replaced my ascending aorta. And if that was not enough,
they also did a quadruple bypass on the left side of my heart. It
felt, for a while, like my heart was hit by a Mack truck. In essence,
it was! But the name of the truck was 'cholesterol' instead.
This is an X-ray of my heart, in a lateral pose. You can see the artificial parts inside the heart, as well as the steel wires that helped my sternum heal.
I won't
go into the details of my past year – you can always read my past
blog posts to find out how it went down. But I am sitting here today,
typing this and, for the first time in a long time (2 years) I feel
like the monkey on my back has taken a hike.
I can
now make plans, and actually enjoy Christmas and New Year's without
wondering what the monkey will do to me if I don't 'feed' it. It's an
incredible feeling of peace and gratitude.
The tech
from my last year's echo said: “It's pretty bad, but you have to
wrap your head around this huge surgery a little bit, and then,
you'll bounce back after a short time. I see people do it all the
time.” I honestly thought she was on crack: how the heck do you
'wrap your head' around your heart being stopped and being cut in
two, and parts of it being removed and replaced with God knows what?
And how the double heck do you 'bounce back' from that?! Looking back
at this year shows me that she was mostly right.
What
cholesterol does to us in unequivocally bad. When I hear people say
that watching your cholesterol and how it can affect your heart and
brain is a myth, I just want to jump right out of my skin and give
them a good shake. Cholesterol damage is
real and I have this past year to prove it. Send me a note and I'll
ask my surgeon to call you and tell you what state my heart and aorta
were in at only 41 years of age. And this is also after
20 years of medication for lowering cholesterol. I am not sure what
state they would have been in without medication.
I
visited with my surgeon this past week. He got together with my
cardiologist and they both read my latest echo together. The surgeon
called me this week with his interpretation of my results, which, he
said, agree with the cardiologist's opinion, too, for the most part:
my replaced On-x aortic valve is doing great and he said “it will
last you for the rest of your life, as long as you don't clog it.”
It does still have a leak, more than what he normally sees on these
types of valves, but the leak is trivial. He is not concerned about
it. He said it all comes down to how I feel, and I feel great. My
left ventricle (on which he placed 4 bypasses and which had an MI
while I was recovering in the hospital right after surgery) is
“incredibly strong” and my ejection fraction is back to around
70% which he says it's almost the number for a “healthy heart”.
I still
have a very low systolic BP, which he cannot positively diagnose. He
says as long as I am not dizzy and otherwise feel OK, the number
won't matter much. I know the cardiologist is concerned about the
number, but I have felt great, too. I do have occasional spikes in BP
which I also had before the surgery, but they are short lasting.
Alcohol seems to cause this sometimes, too. But that is something
easy to live without, or with very little of. It is a miracle to me
to not have angina anymore. I believe my first bout of angina was
when I was in college at 21 and it was happening weekly, sometimes
daily (depending on what I did) for 20 years now, before my surgery.
I have not had that since surgery. This tells me my heart is now on
the mend and has been freed to work as it should.
I have
been lucky beyond belief that I have managed to go back to work after
3 months of medical absence and I have not taken many sick days since
(7 months ago). Ironically, the only sick leave I took after the
surgery was for stomach flu. I have had only one ER visit (for low BP
and dizziness), and only one Urgent Care visit to stop a bleeding
finger which I chopped while cutting up onions. I have been
incredibly blessed with not only good doctors, but a great family and
husband who has done pretty much everything around the house so I can
rest and take it easy.
I have
taken this past year “off” from traveling which I love, just so I
will be gentle to my heart. We did take road trips but I have now
flown. Being 'grounded' was not all bad. I have gotten more in touch
with my crafts and they have helped me lift my spirit. I have also
spent some time learning and finding new beautiful places around our
home, which I never would have made time for otherwise.
My
surgeon was shocked that I have not flown yet. He said: “Go out
there, and live your life! This is why we did this, so you can have a
good, happy, meaningful life. Go and enjoy!”.
It felt
so freeing to hear him say that. And as a good patient that I am, I
am about to follow orders.
As you
all know, I have a new life and new routine after this surgery. I
watch what I eat constantly, and I am hooked up with apps that tell
me how much Vitamin K is in anything. Both my doctors always tell me
that the only ONE thing that I must ensure I do to protect the valve
is to 'not clog it.' I have other food allergies, too, and watching
what I eat and where I eat it is almost second nature now. I don't
think about having to think about it. It just happens as routine. I
have 10 medications I have to take every day, for the rest of my
life. This includes prescription and non-prescription drugs and
supplements. I have one shot I take for cholesterol, every two weeks.
I go to the clinic for my INR check every month now, and I check it
at home about every week. I have a cardiologist appointment every 3
months (for now), and I meet with the surgeon after every echo (about
6 months now). It's all in my planner and every “thing” I have to
do is just part of my daily routine, like brushing your teeth or
doing your laundry.
My
regimen of drugs and doctor's appointments include a double focus
nowadays: the cholesterol numbers as well as how the 'repaired' heart
is doing. Cholesterol has always been in the front and center focus,
but now, the heart is very much there, too, as you can imagine. We're
no longer trying to prevent affecting the heart with what the
cholesterol is doing. That's already happened and has had some
mending. Now, we're watching how the mending is doing as well as
whether there is further injury to it from the still slightly
elevated cholesterol. My new numbers
(http://livingwithfh.blogspot.com/2016/09/numbers-come-back-to-their-normal.html)
look pretty close to normal, however, and I am hoping that I can
keep taking the new PCSK9 drug I am on. Its affordability, though, is
a huge challenge at this time. As long as my cardiologist can supply
me with samples, I pray that this will help the numbers stay low.
One
thing that still worries me about caring for my heart, are
infections, because we have so little control over those. I have had
an infected tooth for a while (doctor doesn't know how long, because
it has not really hurt, so I didn't complain about it). They have
treated it for now, to let me go through the holidays, but I must
have the tooth pulled to prevent the infection for really drilling
into my sinus and spreading in my body. I am more vigilant now, when
it comes to my teeth – I go to the dentist for every new throb, or
pain, or sore gum. I just don't want to risk some pesky bug going
into my blood stream.
But
outside of all these, which are truthfully my new normal, I am happy
and I feel complete, and so lucky. I thank God every day for giving
me such a challenge. I never knew I could do these things before I
had to do them, and coming out on the other side of it is like being
born again, truly. You know how a puppy scared of water feels like
when you throw him in the lake and he realizes he can swim and he'll
be fine, after all?! That's exactly how I feel.
For
Christmas this year, I feel peaceful and healthy, despite all the
limitations that I was left with after surgery (consult previous
posts here, too). I feel ready to enjoy my family, my memories and my
foods and to plan for what it is ahead. After all, planning the rest
of my life is quite a chore.
Merry
Christmas to all and much health and strength in the new year!
And
lastly, I am sharing with you my “Open Heart Surgery Year” album
– there are pictures in here when I am at my worst (not awake yet
from surgery) all the way to the newest picture which I took about 2
weeks ago, with our Christmas tree. If you hate bruises and cuts,
maybe it's not for you: https://wanderworldpics.shutterfly.com/22602
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