Finding New Purpose After Getting New Lungs

Not having a roadmap for life wasn't a problem when I thought I wouldn't be around long enough to take the trip. A double lung-transplant has me rethinking this belief.

| 5 min read
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Eirik Gumeny
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Growing up with cystic fibrosis, I was told that I would die young a lot more than most other children. At age 10, I was supposed to be dead by 17; at 17, it was 25 ... then 30, then 34. I'm currently pushing 40 and still not dead, so maybe you can see the problem here.

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Eirik hiking into the Grand Canyon.

Before my double lung-transplant 2 1/2 years ago, I didn't believe in a future, much less plan for one. I never gave much thought to “living my life to the fullest,” because struggling to live was a full-time position. No backpacking through Europe for me, thanks, but you can send a postcard to my hospital room.

Jobs were jobs, not careers. I needed to pay for rent and ramen and not much else. I worked whatever was easiest -- at Blockbuster, call centers, a ton of terrible temp jobs. I didn't need a 401(k) or a retirement plan, just a job somewhere with half-decent insurance that was cool with me taking a lot of sick days. Invariably, these kinds of jobs ended up being of the high-turnover, customer-service variety, with little room for advancement. And the more I worked them, the more my chances of working anything else disappeared. While other folks were spinning out over this, all I could do was shrug. What's the point in worrying about 20 years down the road when I might not make it 20 days?

As I continued to not die, however, I began to have fleeting thoughts that maybe this wasn't the right approach. Something like hope glimmered on the horizon, and I began wondering if maybe I should have tried a little harder, been a little pickier; maybe I was the exception when it came to CF?

Then I ended up on 10 liters of oxygen and listed for a transplant, and planning for anything other than a funeral seemed like a waste of my rapidly dwindling time.

But now, post-transplant, all that stupid hope is crashing down over me again. I know I'm not guaranteed a future, but reaching age 50, maybe even 60, suddenly seems like a very real possibility. I need to reconsider all those things I brushed off before, including my place in the world.

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Eirik and his wife Monica at his 2nd Transplantiversary party.

Ironically, the part I spent the most time worrying about -- my career -- is now the least of my problems. For the moment, I've managed to cobble together a moderately successful series of freelance writing jobs. But with that hurdle cleared, it makes the other, much larger issue abundantly obvious ...

I have no idea what to do with my life.

Turns out, there is more to life than just covering your mortgage and staying fed. Now that I'm not struggling to stay alive all the time, I feel like I need to do something; something that makes a difference in the world. Because it's not really just my life anymore, is it? Someone died for me to be here; what do I owe him? How do I pay back my wife and family for all the sacrifices they have made? Is it enough to lead a good life, to be happy, or do I need to take all of the pain and suffering and turn it into something tangible, something that helps others?

I'm learning there are no easy answers to these questions. And there's certainly no universal catch-all.

The biggest struggle I've had with all of this is fighting the feeling that I'm being selfish, stalling and wasting everyone's time with something I should have figured out by now. Why do I get to go on nature walks and road trips, trying to “find myself,” while everyone else is busting their butts behind desks or climbing up telephone poles or wrangling kids or slinging coffee? As a very angry cop once asked me when I tried to pull into a handicapped parking spot, pre-transplant: “You think you're special?”

Well, officer, yes.

I came to terms with the fact that I would die young a long time ago. That was all I heard, so that became who I was, and I found a way to make my peace with that. But that's not normal. Most people don't have to deal with that kind of burden, much less its sudden and drastic removal. After a lot of time -- and a couple of therapists -- I see that now.

I'm not young anymore. No one's telling me I'm going to die anymore. I've got a second chance now, a second life -- and I'm realizing that life might actually have value. So, yeah, it's all right if I take a little while to come to terms with that, if I need a second to rethink some things. After all, you're only supposed to get the one life, right? I don't want to screw this up.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Topics
Lung Transplantation | Emotional Wellness
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Eirik Gumeny is a freelance writer and the author of the Exponential Apocalypse sci-fi series. His work has appeared in publications ranging from Cracked to The New York Times. Diagnosed with cystic fibrosis at age 3, Eirik had a double lung transplant in 2014. He lives in Albuquerque, New Mexico, with his wife and their two terrier terrors. His website is egumeny.com, and you can follow him on Twitter and Facebook @egumeny.

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