How the heck did I get here?

Baby Face

Look at that adorable baby! Who could have known that even then I had this condition that would slowly destroy my lungs? Alpha 1 Anti-Trypsin Deficiency had only been discovered the year before I was born, and nobody truly understood it, let alone diagnosed for it. And see that little gal next to me? That's my older sister, Sue. She has Alpha 1, too.

That's Sue, who has Alpha 1, too

That's me, the cute one

Little Guy Adventure Time

Yep, that handsome little guy is me. I was pretty cute, don't you think? I had what you would call a pretty typical childhood. I rode my bike too fast, jumped off the garage roof with a cape made out of a dish towel to see if I could fly, and loved to play with my toy cars (Matchbox were a favorite). Little did we know that anything was wrong with me. Well, other than the obvious little brother getting-in-trouble type things.

Lean, Mean Teen Years

I was on the swim team in high school, and even played the trombone in the high school band. Football? Basketball? Yep, played them all. Sports were my life - well, except for the girls, of course - and it wasn't unsual to find me on the court or the field most days. I seemed like any other young guy in my neighborhood; active, athletic, and full of energy.

My Roaring Twenties

These were the years....the mid-80's were awesome for a young, good looking guy like myself. It was the time of big hair, loud music, and rock and roll. I hung out at the clubs, played my music way too loud, and partied hard. I even took up smoking cigarettes - a disgusting habit that ended up ruling my life for the next twenty-some years.

When I was 26, during the height of my partying days, I met a young lady through a mutual friend who turned out to be my undoing. No, really. She was the exact oppositive of most of the girls I'd been dating. She was quiet, kind of shy, a churchgoer, and absolutely not a party girl. I didn't know what to make of this creature. I was mesmerized by how different she was compared to everybody else I hung out with. Within just a few weeks, we were a solid couple. I attended c hurch with her and her parents and was baptized and confirmed in their church. Within three and a half years, we were married. Twenty-two years later, and Krystn is still my wife, soulmate, and best friend.

By marrying me, Krystn had changed my life. Little did I know then just how dedicated of a wife she would turn out to be.

Thirty-Somethings

My thirties held ups and downs for us both. I had a great job, Krystn went to college then became a special education teacher, and life was good. We had family and friends we loved and who loved us back, great jobs, and everything seemed to be perfect.

Then, a year after we got married, we lost my mom to lung cancer. She had suffered from emphysema for years. We were devastated. My mom was my world. Two short years later, we lost my dad to lung cancer, too. I'd lost both of my parents to the same terrible disease within a two year period. It shook me to my core. Little did we know then that my sister, Sue, and I had both received the gene from each parent that would mean we have Alpha 1 Anti-Trypsin Deficiency. At the very least, mom and dad were carriers. And looking back now, we realize that Alpha 1 probably led to their cancers.

We rallied, moved on, and talked about starting a family. Then Krystn lost her dad unexpectedly. Being a Daddy's Girl, this turned her world upside down.

But we were there for one another.

Lordy, Look Who's Forty

The start of my forties were looking good. I had started a new career with the State of Michigan - which I loved - and we had bought a home in Mason, Michigan.

Then came the winter of 2007. Krystn and I were out shoveling the snow in our driveway and I was so out of breath that I had to keep taking a break. Never one to miss an opportunity out that I was still smoking, Krystn pointed out that if I'd only quit, my breathing would improve. I grudgingly agreed. I knew that my breathing wasn't good at all that day, but attributed it to the bitter cold weather.

Then, in the summer of 2008, my sister Sue was diagnosed as having Alpha 1. Because it's a genetic (hereditary) condition, our other sister and I were urged to also be tested. That's when I got the news...

I had Alpha 1.

We had no idea what Alpha 1 was, or the ramifications of having it, at that time. As we learned more about the condition, our concern grew. We began to realize that this was SERIOUS. So serious, in fact, that my lung doctor refused to release me to return to my job with the State because it required me to be around exhaust, brake dust, and other contaminants that were dangerous to my lungs. I was forced to go on medical disability.

My last day of work was January 2, 2009. I've missed it ever since.

I immediately began working with my lung doctor. He put me on a weekly infusion that replaces the enzyme my liver does not produce. That seemed to keep my lung function steady for many years.

And remember when I said that marrying Krystn changed my life and I had no idea how dedicated she would be? This was when I saw what a great wife she is.

She didn't leave me.

She didn't walk away. She didn't say, "I didn't sign up for this." She didn't flinch.

She just straightened her shoulders, looked me in the eyes, and said, "WE got this."

The Nifty Fifties

I began working with Henry Ford Hospital in Detroit to get listed for a double lung transplant. My main issue? My weight. Sitting at home day in and day out - and not being able to really breathe well enough to work out - can lead to a little weight gain.

Then, in December 2015, something terrible happened. I caught RSV. Wait, that sounds familiar, you say? Well, if you have kids, you've heard of RSV, because it's a serious respiratory virus that usually hits children under the age of two or people with compromised immune systems.

Yep, the latter part was me.

The RSV knocked me off my feet and landed me in the ICU on a venilator for 4 1/2 weeks, with another three weeks of recovery time in the hospital before I was released.

The good news from all of this? I lost nearly 40 pounds! I call it the "Sparrow Hospital ICU Weight Loss Plan." Actually, it was from being on a stomach tube while I was on the ventilator.

I'm here to tell you that liquid diets really DO work, although I'd recommend avoiding the whole being-on-a-ventilator part.

I immediately followed up with Henry Ford Hospital and we began working in earnest to get me on the transplant list.

Finally, after MANY tests and procedures and visits to Detroit for appointments, I got the call.

On July 22, 2016, at 3:09 PM, my transplant coordinator called to tell me that I was officially on the transplant list!

And you know what? Krystn has stood by me every step of the way.

Through thick and thin, in sickness and in health, for better for worse.

Yep, I'm a lucky guy.

And like she said when I was first diagnosed..."WE got this."

Welcome to

Jim's Transplant Journey

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