Getting back to running

Before I was diagnosed, my wife and I ran 5Ks.

She started it, really. A bunch of her friends were into running and they convinced her to run a race. I volunteered to be her running buddy while training around the neighborhood.

Things went pretty smoothly for our first race. I think our first time was somewhere around the 39 minute mark. It was definitely less than 40 minutes, which was our goal for the first race.

As we ran, our times got better and better. Down to 36 minutes, then down to 33.

Our goal for the 2015 Labor Day race was to finally beat 30 minutes. Unfortunately, I went into the hospital the weekend before the race 🙁

I have tried to get back into it over the last year. I ran the Cupcake 5K back in February and that was awful. I half-assed trained for it. I probably would have finished faster if I walked it 🙂 I ran it with my son and he kept wanting to sprint ahead. I eventually let him and finished by myself.

After that, I tried to train, but ended up getting plantar fasciitis. That is no joke! It all started with a terrible pair of shoes and the weight I gained.

To fix the plantar fasciitis, I got inserts recommended by my doctor. The inserts changed my gait, which started bothering my right hamstring.

It was one thing after another. My foot and hamstring are finally feeling fine, so I’m starting off slowly again, Couch to 5K style.

I think the first race I’m going to target is the Cupcake 5K in Feb 2017. Even thought that was a fun race last year, it was a fun one. Maybe I’ll be able to keep up with my son better this time 🙂

Virtual walk!

I’m about to get really real, so you may want to pass on this post 🙂

It’s cool. I know this isn’t for everyone

It’s Alpha-1 awareness month! We’re getting ready to head out to the virtual walk. Before we do, I wanted to share a bit of my story.

When I was young, my mother died of bronchial pneumonia. I know this because I found and read the death certificate. I was in 7th or 8th grade when I found it in our attic.

It was bizarre. I had always thought that an autopsy would be hard to read because of all of the jargon, but I found it oddly readable. The only thing I can really remember reading were the words “bronchial pneumonia”.

For a long time, I thought of this as a freak occurrence. Sure, 60,000 people die of it each year, but those are mainly infants and the elderly. This shouldn’t happen to an otherwise healthy 30 year old.

I remember that my mom didn’t go to the doctor when she was feeling sick right before she died. Maybe we didn’t have health insurance and we were trying to save some money? I don’t know. I just remember that she wouldn’t go for some reason or another. For the longest time I blamed insurance and doctors for messing up.

Last year, I found a better explanation, but I didn’t find it by choice.

It was September of 2015, I was turning 40. I was in the best shape I had been in a long time.
I was on my way to a healthier weight.
I could deadlift and bench press more that my bodyweight.
I could run a 5k in under 35 minutes.

Shannon and I were going to break the 30 minutes mark in the Labor Day 5k.
It was going to be a great weekend!

Then, the week before Labor Day, I felt something weird in my chest on the right side.
Imagine a bubble level, except you’re the level and the bubble is floating around your chest, that’s about as close as I can describe it.

Into the hospital I go to get my lung re-inflated, huzzah! I came home the Friday before Labor Day.

Then over, the weekend, it happens again. Another collapsed lung!

This time, after the re-inflation I’m having surgery. They’re going to remove parts of my right lung (the very top and bottom to be specific) and perform
something called a pleurodesis where they get the lungs and the membrane surrounding the lungs to cling together to avoid another lung collapse.

Recovery takes a long time. I’m still recovering from this surgery.

It’s not just physical, it’s psychological too.

I feel helpless at times, out of control in others. Either way, there are things I can control and things I can’t.

I can avoid smoke most of the time. That’s the big thing for me. But I can’t avoid it all together when I go out. Things like that add up to where I feel like I have no control and this damn disorder will dictate my life and I HATE IT SOOOO MUCH!

What’s even worse is that this is a genetic disorder. But it’s not like the dominant/recessive genes we were taught where you needed 2 of these genes to have it. This is a bit more nuanced. With this, two normal genes is good, only one normal gene is ok as long as you live a certain way. Two non-normal genes can be awful.

I have one good gene and one non-normal gene. Shannon has two normal genes. We have 4 children, you do the math. This doesn’t just affect me.

Recently I went to Denver, Colorado. Sure I went there to regain the 40th birthday celebration, but more importantly, I went to prove to myself that I could. It was a really cool trip.

It sounds silly, but I really did need to get my groove back. I need to know that I’m not helpless in this and it’s not left up to chance.

While it feels like I have no control in the end, I do have some control. Sure it’s not much and I need to assert it more often to keep myself sane, but it’s what I have to do.

If you’re still reading, thanks.

if you’re ready to kick this disorder’s ass, more power to you.

Aside from me offering my body to science, you can help by donating and raising awareness.

If you can donate, join us on the virtual walk this month

If not, feel free to share this post with anyone to raise awareness.



Another collapse

I started wroting this post a while ago, but never finished it.

Mainly because I’m just so tired of having to think about Alpha-1.

Anyway, here it is in it’s unfinished form. Maybe I’ll get around to the rest of the story sometime, but i doubt it.


In the spring of 2015, my wife and I started running. We started off using a couch to 5K program and ran our first 5K on the 4th of July. We did pretty well for our first race. Our time was just under 39 minutes.

Over the summer we trained some more and got our time down to a littler over 33 minutes. Things were looking good. We were having fun and getting into shape. Our next race would be in September, Labor Day weekend. We were going to try to get our time down closer to 30 minutes.

The Friday before labor day and 3 days before next race, I woke up with a familiar feeling. I felt another bubble in my chest on my right side. I knew what happened. Another lung collapse. Luckily, the collapses I’ve had haven’t been too bad. My lung collapsed a bit, about 30% or so. It’s not the worst feeling in the world, but it certainly isn’t pleasant 🙂

I had quit smoking after the last lung collapse, but soon returned to the habit. You know, all of the same lame excuses. Work was really busy, etc, etc. I wasn’t smoking all of the time, but any smoking is too much.

I let Shannon know what I suspected. I headed off to the emergency room while she arranged for someone to watch the kids for the rest of the day.

I arrived at the emergency room and went up to check in. I told them that I’m pretty sure my right lung had collapsed. I’m pretty sure no one actually believed me, “Sure it collapsed, “ they said sarcastically. I told them that it had happened before and it feels the exact same way, but I’m sure they just thought I was nuts.

Once I got back into a room, they took and x-ray and sure enough, it was collapsed. The nurses were pretty shocked and were all “Wow! It really is collapsed.” Not like I told them or anything 🙂

The last time this happened, I got the small tube in my chest. This time, I was just as lucky.

I remembered how out of it I felt the last time the ER docs put in a chest tube. Whatever they had given me for the pain certainly did a number on me. I was wary about feeling like that again, so this time, I declined anything but a topical anesthetic. The doctor looked at me funny. “Are you sure?” he asked. “Yes,” I replied.

Wow, was that a mistake.

Before, when they put in the tube, it felt like someone was pushing their finger hard against my chest. It wasn’t really painful, but it was definitely felt. This one was completely different. It hurt like hell going in and didn’t get much better after that. Anytime I shifted or moved a tiny bit, I would feel the tube inside and it would hurt.



First signs of trouble

This is the story of my first lung collapse. While it was scary, unexpected and weird for someone my age, 38 at the time, we didn’t think it was going to be life changing.

At the time, I smoked off and on. I had smoked off and on since I was about 18 or so. There were periods where I’d go years not smoking, then start again for dumb reasons, just like most smokers I’ve known.

Back in spring of 2014, there was a team-building weekend for work. We were headed for Charleston, SC.

On the way there, I felt fine. When we arrived, we went out for dinner, then back to the house we had rented to hang out. While we were hanging out, I started feeling like I was getting sick.

I didn’t think anything of it. I tended to come down with a chest cold twice a year, one in the winter and one in the spring/summer, almost like clockwork. Since I didn’t think it was anything major, I did what I always did, hunkered down in a bed and tried to sleep my way through it.

I slept pretty much the whole team-building weekend and still wasn’t feeling any better on the ride home. I probably should have hit up a doc-in-a-box or something while I was in Charlston, but I didn’t think what I had was serious.

Once I was home, I fell right back into bed. The next morning, while I was coughing and sneezing, all of a sudden, it felt weird when I moved. Like painful weird. Whenever I rolled over or sat up in bed there would be a pain in my right chest. I stayed in bed the whole day and slept on it.

The next morning, the pain was still there, so I went to see a doctor. They said I had a wicked chest infection and since I had chest pain, they thought we should do an x-ray.

Lo and behold, my right lung had collapsed about 30%. They said I should get to an ER right away. The local hospital was only 5 minutes away, so I drove myself against their advice. I had driven myself to the doctor’s already, another short trip would be fine. The doctor called ahead to the ER and sent over the x-rays they had taken. I got in the car, called my wife, Shannon, and headed over.

Once I got to the ER, no one really believed that my right lung had collapsed. I was only 38 so it seemed crazy, even with whatever the doctor had sent over. To be honest, I don’t think they even looked at what was sent over. While I was in the ER, they took me to get another x-ray.

Shannon found one of our friends watch our four kids. She arrived while I was waiting for the results. I can’t even imagine what must have been going through her mind at the time.

The fun thing about the ER is that you can sit around and wait a looooong time, but as soon as they see you as the highest priority, things are a blur. Once the results came back, the ER doc took Shannon out to look at the x-ray. When they came back in, the ER doc said they were going to put a small tube in my chest. Luckily, I didn’t need the one that goes in your side, that’s way bigger than the one I got. I got the small one that they can put in your upper chest.

I say I was lucky because I got the small one. It still hurt like crazy going in. Sure, I was on some pain medication that, according to Shannon, made me imagine “onion bunnies diving into a flower,” but there’s just no way that someone pushing a small tube into your upper chest isn’t going to hurt.

Once that was done, we waited around a bit before we got a room at the hospital. While the collapsed lung was the worst of my issues at the time, I also still had a raging chest infection that wasn’t getting better.

We finally went upstairs after about an hour or so where they started me on broad spectrum antibiotics since they didn’t know what the infection was and it wasn’t getting better. They expected me to be in the hospital for about two or three days to get rid of the infection and make sure my lung would stay re-inflated.

I asked the doctor why my lung had collapsed. Her best guess at the time was that the infection weakened the lung and it just popped. Sure it was uncommon in someone my age, but not unheard of. Stop smoking and don’t exert yourself too much for eight weeks were the take home instructions. Of course I stopped smoking for a while, but eventually started again down the road.

I had a follow up visit with the doctor that took care of me in the hospital after 8 weeks and thought that was that. But of course it wasn’t. It would be a little over a year later that the lung collapse would recur. But that’s a story for next time

Welcome to our lives!

Matt was diagnosed with Alpha-1 Antitrypsin Deficiency in the fall of 2015.  But it has affected our lives for far longer, starting with the loss of Matt’s mom to bronchial pneumonia when he was eight years old.  When we learned of his diagnosis, of course we turned to the internet for answers. There are lots of answers out there.  So many, many answers.  Answers that contradict or mislead, cookie cutter answers to questions that require specifics.  We were told that Matt, as a carrier, could expect to live a relatively symptom-free life.  Why, then, had his lung collapsed twice by 39?  We were told not to bother testing our kids unless they showed lung symptoms.  But if we don’t know, how do we know to avoid seemingly innocuous things like bonfires that people can comfortably trust their lungs to breathe through?  The intent of this blog is not necessarily to answer questions, but to share our story of having questions, seeking answers, and maybe sharing experiences that others can learn from.  We will begin sharing the details of our journey, from onset and diagnosis, testing our kids, and dealing with every new twist as it happens.  We hope to make this a forum where people who are living with Alpha-1 can share their journeys and we can learn from one another, or at least feel a little less alone.