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.

To Uncle

Dear Uncle,

I am calling you this because honestly, until today, I never knew your name was Steve. This is always what Liz has called you - just Uncle. I only met you a couple of times so I never got to taste the fabulous ribs that your niece talked about this morning or hear your jazz collection. However, even though I didn't really know you, I certainly know the kind of man you were. And how your simple actions made such an impact in my life - a life that remained mostly unknown to you.

You did an amazing thing in the fall of 2006 by saying yes to a sick young woman - the daughter of your late brother. Liz's heart was failing and her life was falling apart. She needed a new heart and a home. You offered your home and a chance for that new heart.

When I met Liz on that mid-October night, about 10:00 pm, it was by chance. I was headed to the ice machine and happened to see that the patient in the room across the hall also had my cardiologist and my same ridiculous liquid restriction. There were plenty of liquid restrictions on the floor but currently there weren't any heart patients and certainly no young'uns.

Sitting on the bed was a woman, maybe my age? maybe a bit younger?, with long blond hair pulled up in a ponytail. She was bent over her meal tray coloring with crayons in a kids coloring book. There was a little dish of hard candy next to her crayons. Her room was empty, unlike my room crowded with hand-drawn banners and pictures. A Halloween movie was on the television.

I think I may have startled her when I poked my head in and asked, "hey, you get ever tired of hearing that you are too young for this?" She looked up, her blue eyes were guarded.

"Yeah," she was suspicious. Later I learned that she was thinking, who the hell is this all in my business? I don't blame her. I was, after all, very much in her business. I was a little nervous, a little scared and a little hopeful.

Until Liz, I'd spent all 18 years of my heart condition without ever meeting any other woman or person my age with cardiomyopathy. I had a cadre of old-man friends - Jim and Ray and the other cardiac rehab guys that were my comrades in low-sodium diets, lasix and beta blockers. But they all developed their conditions late in life. None of them had been told they couldn't have kids because of their heart. None of them worried about making lifetime commitments for fear that a future wouldn't be theirs.

Unbelievably (or maybe not, on second thought), there she was. In end-stage heart failure like me, bloated like me, out-of-breath like me, unsure like me, a little angry like me, and also, unfortunately, tiny like me. I couldn't believe it. Here, after being absent my whole life, I'd finally met a friend - a fellow patient - in for the same reason, the same thing. It was an instant and painful connection.

The next morning the doctors asked me if I had met the new patient yet. A young woman named Liz. I had - and despite the initial excitement of meeting someone else, there was another more pressing question in both our minds. Were we competing for a heart?

The doctors said no. But Liz and I knew better. We were both very very small - and as we quickly found out - we had the same blood type too. This relationship - on such fragile ground could go either way. I did the only thing I could do. I gave it up to God.

A wise friend of mine recently told me that God always puts what we need, not necessarily what we think we want, in front of us. God put Liz there, front and center. It was up to me to decide.

So we became friends. We liked to hang out together at night and walk with our IVs to the IMCU waiting room to sneak Doritos and Funyans from the vending machine. I learned of her hard life in California, her fresh start here and her struggle to find a family. We talked about our fears and the long roads already behind us. We talked about girl stuff. We played games in my room and we cried. A lot.

Eventually Liz left to go home. We were never again able hang out together on the floor. From then on, we were on our own but always so close. The doctors wouldn't tell us anything about each other, but the nurses kept us updated. There were times when we were rooms apart but couldn't walk to see each other and were too tired to call. Chris and my parents would shuttle info back and forth as they could.

And God's plan was His plan all along. The heart that was maybe, possibly supposed to be mine - but really never was - went to Liz on November 11th. When the news was broken to me, gently for fear I would respond in anger or jealousy, I cried with joy. I called her and in my voice, raspy from the ventilator, told her that she would blaze the trail for us both. She needed to tell me everything - she would forever be my sister-in-transplant.

Ironically enough, this northern California girl who came to Colorado for a heart, had her heart custom delivered from the Bay area. She may be the only person whose heart actually did leave San Francisco.

Uncle, you have no idea what bringing Liz out here has done for me. You've given me an awesome gift. A friend to walk with me on this hardest of paths. A sister to understand the frustrations, the struggles, the pain - someone with whom I can cry, laugh and above all, shout "I HATE BIOPSIES" and will totally understand. Someone who is ALWAYS on my side, no matter what.

For all of this, I say thank you. Thank you for opening your heart and your home to Liz. Thank you for giving me this wonderful friend whom I dearly love.

Rest in peace, Steve.