On Not Going Gently

So, what happened in there, the night of my biVAD surgery?

I was sitting with my surgeon, Dr. Awesome, almost a year after my transplant. He was late to the appointment by almost 90 minutes - his last of the day -  but had called ahead to his nurse to ask if I would mind waiting. We were there, ostensibly, to talk about my wiring.

My chest wires to be specific. The ones that sort of look like twist ties wrapping around my sternum were poking me from the inside. None of the options were worth the inconvenience of living with being poked so we continued on to other subjects. 

I actually knew full well what had happened on the night of November 7, 2006. I'd managed to get my hands on my medical records and had pored over them with the help of Google to translate the medical terminology. I'd read the timeline of events and frankly, there in the stark black and white of the doctors' messy handwriting, it hadn't seemed nearly as dire as I had heard. 

He told me the surgery had started out well, especially for someone who was hanging by a thread, in multiple organ failure and on a balloon pump with a heart beat that was as steady as a popcorn machine. Once the biVAD was in, by all accounts, the operation was a success. 

And that's when something bad happened. My blood wouldn't clot. I wouldn't stop bleeding. They did everything, he said. I was loaded with as many clotting agents as probably exist. They talked about just leaving me open to monitor, but in the end decided to close me up and hope for the best. All in all, I received enough transfusions to replace my body's blood at least three times over. He stopped talking for a second. It was out of our hands, he finally said.

It was your will to live.

Even now, I still have a hard time finding the words to describe what happened that day. The day where everything bad that can happen to a heart happened. The day that my family (and friends) pulled together around me like a sweater. The day that God did something that I can never deny.

When you pass through the waters, I will be with you;
and when you pass through the rivers, they will not sweep over you.
When you walk through the fire, you will not be burned; the flames will not set you ablaze.
- Isaiah 43:2 (NIV)

Going Back

This week I had my annual heart transplant tests - a right heart cath, a left heart cath (aka, I believe, an angiogram), an echo, a VO2 max treadmill stress test and a kabillion labs. The only thing missing from this day of fun was a biopsy, aka the rejection test. Unbeknownst to me, the clinic has stopped doing biopsies for everyone over two years out providing that 1) you are not presenting any rejection symptoms, 2) there have been no med changes, and 3) you have a good history. So no neck poke. Hooray!

Annual test day, in a word, is tough. The tests span two opposite ends of the spectrum - running on a treadmill with snorkel gear in your kisser to flat on your back, stoned on the "juice," and keeping your leg still for four hours. And in between, there are EKGs (at least two), blood draws, IV insertion (three attempts this year) and multiple exposures of any and all body parts. Including the ones that have nothing to do at all with your heart. AT ALL.

I can't help think when I'm doing all this that for 3 1/2 months - and really for the first two years post transplant - that this was my life. I'd automatically extend an arm to a nurse for a draw, it was second nature to rattle off my extensive drug list (including dosages) and I could give you a medical history so fast and complete it would make your head spin.

And I can still do those things (and did) but these year was different. This year, I RAN on my treadmill test for almost a minute - at an 18% grade. That is like running up Mount Massive (okay, for a minute, but still!) I exceeded my age potential by 103% - most heart transplants, due to our physiological differences, don't get to 75%. When I commented that I'd been doing interval training, the doctor warned, "but the test has an incline." To which I responded, "yeah, when I'm not doing intervals, I'm nearly at the machine's incline potential." 'Nuff said.

This year, the number one question was if "I'd gone back to work yet." There were actual looks of surprise when I answered, "Um, yeah...I've been working since five months post-transplant. And yes, I am back full-time. More than full-time some days."

And when the X-ray technician asked me if I "was a good walker" for one second, I wanted to throw that 103% in her face and then sprint to the machine, although despite the fact that I am a GREAT walker, I would've fallen on my doped up ass.

And then I remember that I could've run into the hospital straight from an Ironman competition and that wouldn't change a thing. To them I am a patient, the girl who survived one of the last of the old school bi-VADs, the girl who had her blood replaced three times in twelve hours, the girl who could barely walk when she left the hospital. And I was all those things - without those things, I wouldn't be who I am now. I am so grateful for that experience which gave me my life.

So even if the hospital never sees me as more than my patient number, I know that I am the woman who hiked nine miles in one afternoon on the Colorado trail, who indeed works a full schedule (plus extracurriculars), who dreamed of scrapbooking (literally) while on the cath table instead of grilling the doctors and happily left with her wonderful husband late Tuesday night to go her home with her pets - back to this incredible life.

The Voice of God

The first few hours coming out of a major surgery rank up there as the some of the worst hours of life. I don't think this is common to just open-heart surgery patients. It seems the longer and more intense the surgery, the harder the journey is back to your brain.

You who have had this experience are already nodding. It's like those old anti-drug commercials depicting a smashed up egg as your brain on drugs. When I first started coming back - after a 9-hour surgery, thirteen hours and 34 units of blood later, I was barely alive. I would open heavy eyes enough to see myself bend my arm and wiggle my fingers. It was fascinating to me to watch my pale arm weave through the air for a brief second. Duuuuuuude.

I couldn't speak. I was on a ventilator. The pain sat right outside of my mind's reach. My body burned from behind the drug mask and pain seeped out through my closed eyes in silent fat tears. The cocktail dripping into my veins hid the pain then, but not from my memories now.

Throughout those early hours were the constants in my journey. My sister rubbing my feet. My husband kissing my forehead. My dad sitting quietly in the dark. And, of course, my mother's voice. I recall nothing of what was said, only those brief images and sounds coming from the room and the recesses of my numbed mind.

As the edges of the world began to form, I turned my head to the side. Where I later learned there was a counter, sink and a wall, at that time I saw a curtain over a sliding glass door. The door was partially open and the curtain pulled back. The British nurse was barking, her accent coarse, something about me. The cult. She was reaching over the other nurses at the workstation - she was telling them that I hadn't been initiated yet.

I panicked, my eyes widening. I was trapped in this bed. In this cursed body, by the central line out my neck, by the hot blankets. My waving hand lost its magic. There was a yellowish light from above me - was that the lamp by my bed at my parents home that I used only as an adult? My cheeks were wet. I could still hear that harsh British voice urging the nurses to hurry.

At that moment, my mother came into the room. I called out to her. "Help me!" I was crying harder now. "They're going to hurt me! Put me into a cult!"

My mom brushed my cheek with her hand. She told me that everything was going to be okay. That she would pray with me. I looked at her and she held my hot hands in her cool ones. "God is in this room, Sarah," she said. I could see her face and her hair silloutted against the yellow light. "Just remember that God is in this room."

I closed my eyes. Reassured by her voice and her prayer.

A long time later, when I was out of the hospital, when I heard about a family friend having a hard time post-surgery, I asked my mom if she remembered when she came in and helped me through my hallucinations. She said no. She never did anything like that. I pressed her. Was she sure?

That's when I knew. God had been in the room with me. God had been there all the time. A shrewd move - when a voice and visage were too powerful to come to a girl fresh from the shock of survival, instead came as one of his humble servants. In the voice and visage of the one I trusted more than any other, He came to remind me that I wasn't alone.

I'm so fortunate to have the mother that I do. She's been there through marriages, moves, surgeries, graduations and Super Bowls. Nearly every momentous occasion in my life, has a corresponding memory of my mother. I look up to her as I look up to few people. Maybe anyone, actually.

On this, her birthday (three days late notwithstanding), I wish her an amazing year full of growth, love and life anew.

I love you, Mom!