I
am really almost 42. But I like to think that today, my heart is one
year old.
I
am lucky – I get two birthdays, like most of you here. And my heart
will always be almost 41 years younger than my whole body.
A
year ago today I was not looking beyond that day. A year ago today, I
could see nothing but darkness beyond February 11, 2016. Just
uncertainty and darkness. It was a cold, foggy, quiet day and we
started the day early. The day before, I had gone to the hospital for
pre-op stuff and it scared me a little (yes, I am joking – it
scared me to my wits!) All the warnings about how I would feel
“after”, all the possibilities about infection, how I could not
sit up on my own, how I had to breathe even with a cracked chest, how
I won't be allowed to open my own doors for months; all the education
done by the surgeon about how difficult my circulatory arrest would
be. How it could render me stupid if my brain craved the oxygen. They
were unbelievable pieces of information that made me feel like an
experiment. I mean, how do you not fall apart when they tell you
they'll stop your heart, cut into it and freeze it?! Then, replace a
couple of its parts and rewire the rest?!
But
there was something in my heart (no pun intended) that was bigger
than all the warnings, larger than life itself. There was a
reassurance and a peace that I could not even believe myself. I was
serene, composed and calm (for those who know me, these are all
things I am not, on a regular day). I was confident
that this had to be done and I had the best team on my side to do it.
Somehow, from somewhere, I got this reassurance. I cannot teach it. I
cannot tell you that it comes in 2 lb packs at my grocery store, but
I know that somehow, through fear, and prayer, and family holding
hands together, and an incredible amount of hope, I found this peace.
So,
on that February 11th
day, I walked into the hospital on my own two feet, with husband by
my side, to have my chest cracked, my heart opened and frozen, and
eventually returned back to life.
I
sometimes sit and ponder upon all the bends in the road, all the
bumps, all the highs and the lows I have been through in this past
year. Even now, every day feels a little bit different than all of
the ones since February 11th
at 2 or 3 AM when I woke up from surgery, nurses hovering over me
telling me “Alina, you had a big operation!”. I remember those
few minutes right after I came to: I felt like a little kid, peering
from a small house out through a smokey window, with people looking
in. Very eerie.
Funny
how I got a new heart during Heart and Love Month. I went in for an
aortic valve replacement, to begin with, and possibly a double
by-pass. I walked away with my aortic valve and my ascending aorta
replaced with an aortic graft composite (which includes the valve),
with a repaired aortic arch and four bypasses. And just for safe
measure, I had a heart attack while I was in the hospital, after the
surgery.
And
the long road towards recovery started only after I stood up from all
that. Every day, I think back and I remember something
about this year's journey.
I
remember my first steps in the ICU – I thought they were smoking
dope when they told me the day after surgery that I must make an
effort to stand up and walk. Loopy as hell, with 100 machines hooked
up to me and tubes coming our from everywhere (one or two in my neck,
four in my abdomen, my catheter, IV), my first walk around the ward,
then my breathing exercises, and the pain from my tubes – that was
the worst of it, folks! The pain from those wretched tubes – I
thought it would kill me! But I must tell you one thing: do not argue
for the tubes to be taken out, no matter how bad it hurts! I had one
in me for about 18 days after surgery – they sent me home with it.
But they never had to do a puncture for built-up fluid, and my
effusions healed nicely. I am grateful to that painful tube and that
PA who talked me into keeping it in.
Then,
there were the long days of trying to figure out how in the heck to
sleep. I slept sitting up for months – definitely something to get
used to; but I eventually became so tired that I didn't care anymore.
Then, after several months, I slowly lowered myself down. Then, there
were the fights with the insurance company who wanted me back to work
in a month, even when the doctor recommended at least 3 months of
recovery. Then, there were the ups and downs of figuring out my
coumadin dose; then, the ups and downs of figuring up the dose of my
beta blocker. Then, the skewed BP and pulse numbers – which are
still skewed today.
Then,
the OCD I developed about being clean and not touching anything in
public. Seriously – I used to laugh at people who used hand
sanitizer, and now I practically drink it. There were the occasional
visits to the ER or Urgent Care, too. The sleepless nights when a
tooth hurt and I was thinking my infection will attack my valve. It
didn't.
Rehab
was in there somewhere too. I thought I was going to throw up on my
first day there, when they made me walk very slowly on a treadmill
for 5 minutes! When I graduated, a couple of months later, I was
walking 45 minutes and hardly breaking a sweat. But that could have
been the coumadin – that thing makes me cold, to this day.
Then,
the going back to work with people smiling and politely telling me I
looked great, when I knew I didn't. I got down to 95lbs and I looked
like a pole with stuff on when I went back. Plus, my skin was gray. I
learned from a heart book I read this year that OHS patients have a
gray complexion, because the heart pumps oxygen weakly right after
surgery, and the main organs (liver, kidneys and brain) get the
oxygen first with the skin being last. I was gray for a long while
after the surgery.
There
are literally hundreds of things I have been through this year that
come to mind every day that make me wonder how in the heck do I still
stand on my feet?! Things I never felt before that now I am used to
as part of who I am: the dizzy spells, the weird double vision
spells, the forgetful pump head and the stuttering, the hoarse voice,
the wild dreams on pain killers, the permanent “Charlie horse”
feeling on my numb left arm, the shallow breathing, the tightness in
my chest, like a shirt two sizes too small … the blood popped
vessels in my eye, the bruises right after surgery, the weirder than
weird BP values …the fear of bleeding to death from coumadin, and
the even greater, more horrid, overpowering and permanent fear of
blood clots interfering with my new valve ... and I could go on for a
whole day …
It's
also been a year of trying to get back to normal. My normal is my
work, my husband, my travels. I remember the travels this past year,
full of fear and emotion, but also more vivid, more acute, filled
with life, because every one of them was another achievement towards
that elusive “normal. The mountains, the rivers, and people I met
feel more real than before. I take them in and internalize them all
more acutely than ever. This is what is important, for me, that,
crutches or not, I get out there and live life. I smile at precious
things, I frown at ugly ones, I walk, I see the sky, I love, I hate,
I do what makes me human. I owe it to my doctor and to God who both
put me back together to do my part and show them that their work was
not in vain; that there is still life in this beating heart and
curiosity in my brain, and a drive to discover.
It's
really been a guessing game, every second of every day since February
12th
of 2016, when I started my life on this “other side”. Every day,
I discover a new feeling in my body, a new pain, or numbness, or
betterment, even. Every day, I am amazed at what medicine, but mostly
at what very brave people can do to mend hearts. Every day, I
visualize what went on in my chest and how these bionic pieces are
now working with my heart to keep me alive.
It's
amazing how much you learn about yourself and your body when you're
listening. This past year has been a journey into that, for sure –
into listening and paying attention closely and re-learning my body
and who I am to some extent. I took all the freedom and symptoms from
before for granted. But now, every single thing means something and
it gets me closer to my core.
I
don't hear my valve click, but I do hear my heart beat very strongly
(stronger and louder than before) when it's quiet at night. With
every beat I am walking closer and closer to my end, and I am aware
now more of that end than ever before. I don't want any of these
beats wasted. I want them full of meaning. Every precious beat is a
gift. I want to sign a 'thank you' note to God for every beat I hear
in my ear every night.
I
still think of what happened every second of every day. I asked an
OHS friend how long it took him to just never think about what
happened in his chest, after having his aortic valve replaced. He
said about 3 years. It's a long time, I say, but in a way, I never
want to be forgetting it. I do hope that one day I will surprise
myself with “Ha! I did not think of my bionic heart at
all
today.” but I am not rushing that day … Just like this year has
taught me: one step at a time, in due time.
Today
also ends my self-imposed ban on air travel. My first flight since
before the surgery will be in a couple of weeks and we're shooting
for a warm cruise. A little shy and nervous about it, but I am
willing to let go a bit. I am ready to pack up with what I've got,
the good and the bad, and head on to living life. It's the reason why
I was given a second chance: the show must go on.
The
toughest question I get asked is “are you feeling better?” Or
“Are you 100% yet?”. If this year has taught me anything is that
“100%” is an elusive number. I don't care who you are and what
your life or health looks like, but none of us is ever 100%. But this
does not stop us from living, does it?! I just want to scream at the
top of my lungs that I am alive. Anything else is just bonus. I don't
judge the way I feel anymore. When people ask how I am, or if I have
a good day, I now always say that “Any day when I am alive is a
good day”. And really, I mean that. From the wholeness of my heart.
People look at me weird. But OHS has shaken me up to the point that
my frame of reference is completely changed than before – I am more
grateful and more aware. If I had to pick two words to
describe me now, these would be them.
Just
like river water, we are never the same person we were even a second
ago. We are just different. But nonetheless, we owe ourselves to move
on, eager to meet the next “different” us.
I
heard it for years in yoga that we just inhabit this body, it's not
ours, we just happen to find this host to carry us through this life.
We're responsible to keep it clean and safe and sane, just like we
would any abode. But I have not truly believed that till my heart
stopped and got rebooted and I came out of it and read my surgery
report and really bowed down in humility that this body indeed does
not belong to me. And I am grateful it was given to me to care for …
I hope I do it proud!
You
will go through this and you will learn so much about you, first and
foremost. About what makes you tick (literally). About how strong you
are and how fragile and emotional you are, too. My dad always told me
that heart patients are emotional – I have found this to be true.
This site is proof of that – you all have big hearts and juggle big
emotions. I have learned so much from you all. I also have learned
that I am more emotional than I like to admit. I blame the heart for
that.
You
will also learn a lot about so many of the things that we cannot
control. Especially, you will learn to trust: trust in God, trust in
your doctors, your nurses, your family (even when they don't do the
dishes just the way you like it, they are there for you, make your
recovery easier, and keep you alive).
You
will learn a lot about people, in general. About compassion or lack
thereof, about caring and about science.
I
have tried to live every second of the last year very much present
and very much aware. I listen to my body more now. I know what it
wants and when it wants it. I never ever
put anything first before my body: if my body says I am tired, I
stop. I left a job I loved because I was not able to close the door
at 5 and just relax and give my body a break. I did not know how to
relax before a year ago. Well I am glad to tell you – I love this
relaxing stuff now. Some days, I am a total sloth – I just read, or
paint, or knit, and let the dishes or the laundry wait another day.
Some weekends are just lazy cat weekends with lots of comfort food
and naps. Whatever I need, I give it to myself.
I
have finally learned what the airlines tell us in every flight: put
your own oxygen mask first, before you help someone else with theirs.
In other words: you have to care for you, first, before you can be of
any help to others.
I
cannot believe this day has come. I cannot believe I have truly lived
for 366 days (it was a leap year, last year) and muddled through this
new me and have lived to tell you the tale. I was hoping that after
all these days that big fog would be lifted and I would see the
future more clearly. But it's not true. We can never see into the
future, no matter how perfect we think our lives are. We can only see
the now and here, and what we can touch in arm's reach. It's up to us
whether we make this perfect, or wait for the fog to lift.
The
now is the only guarantee I have, so I am permanently living inside
it, cherishing it, loving it, as if it were all I got. And it is. I
know you think this is a cliché, but there is no tomorrow without
exhausting the now and today. This year turned this cliché into just
fact, for me. The quality of tomorrow is measured only by what I put
into the quality of today. So, I am trying my damnest to make it
worth it.
I
wish every single one of you much courage and faith. There is peace
to be found and you will find it, right before your big day. And
after that, there are amazing resources within your own self that
will carry you through every day that follows. Trust in yourself, and
trust in the power of medicine. We live in a fortunate age which is
truly amazing and we are given all the ammunition to use that
medicine to be whole. Not necessarily better (that's
judgment), but whole and full.
And
for those of you who can hear that click-clack of your valves, enjoy
them! If that does not spell quite clearly “life”, I don't know
what does. And isn't the sound of life the sweetest sound of all?!
Much
health and strength to all of you, on my first second birthday!
What a difference a year makes: February 11, 2016 and 2017
Congratulations, Alina! It has been a journey. I am SO proud of you!
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