WHAT IT MEANS TO BREATH

WHAT IT MEANS TO BREATH
October 7, 2019 Justin Steven Lane
In Blog

February wind ripped across the road as we headed back to Raytown, and Reuben was hurting. Scrunched in the back seat of the borrowed Dodge Dakota with his portable breathing apparatus, he had gone quiet as the night set in, while Collins and I blabbed away about our group purchase— a 1987 Toyota Supra from a guy about two hours away, and the workshops in our brains were already modifying it as we towed it home. But Reuben was just trying to make it through the trip.

After 33 years of living with the specter of Cystic Fibrosis, a genetic disease that affects many of the body’s systems, especially the lungs, Reuben’s hospital visits had become more frequent. There is no cure for CF, and a cutting edge hopeful lifeline drug  had left him in bad shape over the course of the last year.

Collins, our friend Stephen, and I wanted a way to hang out with Reuben when he couldn’t really leave the house, something we could all do together, even if Reuben didn’t have much energy. So we bought something we were all passionate about, a sports car, and hauled it to Reuben’s place.

But the rusty heap had barely oil-stained Reuben’s driveway when he and his wife Bridget got the call: It was transplant time. They grabbed their “go” bags, jumped in the car, and blasted off to Barnes Jewish Hospital in St. Louis, which specializes in transplants.

More than 30,000 Americans suffer from CF, and there is no cure. But about 200 of them a year receive a lung transplant, which can drastically prolong their lives.

Now, months after his successful double lung transplant, I sat down with Reuben to talk about complications, hope for the future, and the importance of becoming a donor.

Most people think that post-transplant, the issues are over. Has that been your experience?

I know alot of peers who have complications. I’ve had some goofiness. But I went into this process eyes wide open. You have to take classes. You’re vetted. It’s not like, “Hey you need a new organ. Sign the dotted line, and we’ll call you when one shows up.” Especially with thoracic surgery, a heart or lung transplant, you can’t even take care of yourself for a while after. So they test everything. Psych eval. Social evaluation. Financial evaluation. My wife had to go through the same evaluations to be a care provider. They won’t even list you for transplant unless you have a dedicated care provider for at least three months post-transplant.

But there are patients, even, who go through this process, who assume that life’s gonna be dope afterwards and all their issues will be solved. But often you’re trading one set of symptoms for another. Even with the meds, there are long term side-effects. Hand tremors. Mood swings from the steroids you’re on. Your skin changes. Your hair changes. All kinds of weird stuff.

For years, Reuben has been mentoring other CF patients, and often younger people don’t understand the importance of living healthy pre-transplant.

Patients think, “Yeah, my lungs are crappy. They’re just gonna be crappy. I’ll just get a lung transplant and it will be fine.” But it doesn’t work that way. It absolutely has to be your last resort. If there are other options on the table, no doctor will ever recommend you for transplant.

The averages are still too low. People die all the time. Even now the median survival rate for one year is something like 87%. If my facility did 100 transplants this year, that means 13 patients, on average, will die within a year of that surgery. Two years is about 70%, three is about 55%, it continues to decrease. So if you can get five more years on your own lungs, that’s what you want to do.

Even healthy, successful transplants like Reuben’s come with complications.

This is all in the hope that your new organs get in line and do their job. It’s not like you bolt the new organ up and you’re good to go. Your body wants to punch your new organ in the face.

And long term, the drugs are super toxic. So if you got new lungs or something, down the line, you end up needing a kidney transplant because they’ll start to shut down. You can eventually get diabetes due to the steroids over time.

That sounds super negative, but it’s not. It’s just real data. The positive is that, yes, there are patients who are twenty, thirty years out from a transplant now, and that’s what you want to have happen.

Reuben touched on the problem of disability support. Patients with a long-term health issue like CF are seen by the government as ready to work post-transplant, and that’s often not the case.

Some people never had a career prior to transplant. They were so sick for so long that it just wasn’t possible. There’s been no process to plug them back into the system. It’s almost like getting out of prison after a long sentence. No marketable skills. Nothing on their resume. And they have a strike against them— a bad health history. A potential employer is still going to look at them as a burden. Some companies are accommodating, but let’s be honest, in the blue-collar industries, they’re often not.

What’s your favorite thing that you can do now that you couldn’t before the transplant?

There are some extreme things that I haven’t been able to do for years. But some of the biggest impacts have been the little things. Things most people take for granted. That I’ve never been able to take for granted.

When we came back to KC, the first time I backed into my garage… My car’s a bit of a bear to drive, so even backing it into the garage, turning in my seat and fighting the heavy steering, I used to have to hold my breath. Everybody does that when they’re backing up quickly. They don’t think about it. But before, if it took too long to back into my garage, I would have to stop with the car halfway in to catch my breath.

Backing the car into the garage, getting out, unloading my trunk. I did all that without thinking about it. Carrying gear down to my studio in the basement. It wasn’t until I set the stuff down, came back upstairs, and stood at the trunk of my car that I realized that I hadn’t paused once.

I’d get ready for a shoot or to go meet a client, and I would have to carry my gear up the night before and leave it sitting on the garage floor so I could recover overnight, and in the morning I would have the energy to put the gear into my trunk. If I tried to do it all at once the day of, I’d be exhausted and have no energy for the actual shoot. Going to my basement office was like commuting to work.

That seems like a little thing, but in the moment that was a huge deal. It’s exciting to be able to take that stuff for granted.

I always used to get frustrated with people who would tell others dealing with anxiety, “Just breathe.” Because in our case, the anxiety of being unable to breathe is not resolved by trying to breathe. Even in church. “Just take a moment and breathe. Stay in that worship place.” That would cause me anxiety. Being unable to breathe permeates every part of your existence. Now, when breathing just…happens, it impacts every single part of your life.

Has your stress level reduced since transplant?

I’m in a better mood the vast majority of time. I used to hang out with friends, and even when I was having a good time, enjoying myself around people, it was 60%. Because in the back of my mind, I’m thinking, “Okay, I have maybe another hour before I feel terrible.” Or, “Okay, everybody parked in the back of the parking lot. Now I have to take my time to get to the front of the lot to get to the restaurant.” Or, “I should probably only eat half of this, because if I eat the whole thing I’m not gonna be able to breathe properly.”

And you feel guilty. Friends would tell me they missed me, and it wasn’t that I didn’t want to come hang out. It was survival. It was deciding if I had enough energy to go leave the house and pick up prescriptions and do a little bit of light exercise, or I could go out for two hours with friends. I had to decide to give up the social side. It wasn’t even that I wasn’t feeling well that day. I just knew my energy was limited.

Now I don’t have to energy manage this much. Instead of dinner or a movie, it’s dinner and a movie, and what else after? It’s even relearning how to enjoy life.

Over Labor Day weekend we went to hang out with friends. I hadn’t been to their house in probably a year and a half, and the last time I was there I was just miserable the whole time. This time we just sat and played cards and talked about nothing. And I couldn’t stop smiling.

But the meds and the trauma have created their own monster. PTSD is very real. I used to understand it from an intellectual standpoint. Now I have real empathy for people who suffer from it. I experience the nightmares, the flashbacks, the weird reactions, nerve twitches, anxiety. That’s a whole new thing to deal with.

But yeah, the good stuff is really good.

And you just got a sponsorship with Bodybuilding.com.

I’ve been with them probably 14 years, leaning on them not just as a hobby, but for life. I was brought up in fitness with my dad, but I didn’t adopt it as my own until later. I got really sick after college, crashed really hard, and had a realization that I needed to take my health seriously.

I found Bodybuilding.com. There’s a misconception that bodybuilding is only for Mr. Olympia. Huge dudes who compete on a stage. But bodybuilding is building a body. They adopt anybody who wants to be healthier.

Reuben dove into the world of fitness and nutrition science, eventually becoming a certified personal trainer while networking with the community at Bodybuilding.com.

All that work laid the foundation of longevity I should never have had. Even seven years ago, when I started the transplant evaluation, they told me I’d need a transplant in a year. Six years later, I was still maintaining. All my strength training and conditioning leading up to transplant put me in the absolute best possible scenario. And I’ve recovered at a record pace.

I’ve been with Bodybuilding.com through all of that. After the transplant I entered a little contest, and they found out that I’d just had a lung transplant. Their editor reached out to me, and now I’m an official sponsored athlete.

It’s really cool because I’m not what you would typically imagine a sponsored athlete to look like. I’m 5’3″, working my way up to 130 lbs. I’m not a stage bodybuilder or a heavyweight boxer. They accepted me based on my own story. Because of the transplant and motorsports, they wanted me as an advocate.

Yes, motorsports. Reuben is an active rallycrosser, which is how I know him best. In the sport of rallycross, we set up cones in a field, then race around them, one car at a time. The fastest time wins. It’s a cheap, easy entry into the world of racing, but it comes with its own set of challenges for someone with CF. Many rallycross cars are just daily drivers with special tires. So competitors like Reuben (and me) have to switch wheels before the race. For me, it’s just a chore. For Reuben, before the transplant, it was an ordeal.

Then there’s the dust. On dry days we’ll kick up enough dust to paint our cars beige. It’s a dangerous environment for Reuben, even inside his sealed car, so he races with a mask on.

Even the schedule can be a challenge. Reuben has gained several sponsors throughout the years, and he honors their agreements, showing up to races. That’s why he competed one event last year in the middle of a treatment. He took a break from his hospital visit to rip his Hyundai around the track— with an IV stuck in his arm.

Now, after the transplant, he’s back out and racing every event. Thanks to his swift recovery, he was even able to volunteer at an event during his rehab in St. Louis.

What would you want to tell your donor?

I have rewritten that letter in my brain so many times. What do you say to encompass so many areas of your life?

I think people think of organ donation as this lofty, existential, good karma idea. But in reality, it’s very gritty. Very painful on both sides. There’s emotion. There’s life. There’s death. And in the midst of all that grit and pain is the ability to pass on, not just to one person, but up to nine people, the gift of years.

When you start to think about not just checking a box on your license or registering on line, but the fact that my donor was only 15 or 20 minutes away from where I was supposed to get my transplant… There was another family a few minutes away that made that decision…

Here Reuben paused for a long moment, holding back tears.

…It becomes real very quickly.

If you’re looking at becoming a donor, if you have signed up, the other side of the coin that you’ll never see is the years put in by your recipient trying to survive. And the network around them raising money and support to get that person to the point of receiving your gift. You aren’t impacting just one life. If it was just one life, it would be enough.

And that’s what I would thank my donor for. Not just impacting me, but all of you guys. All my friends, my family, the people who have sweat and cried with me and for me. That I’m able to come back and say, “I’m home.”

Since coming home, Reuben’s energy levels have skyrocketed. He’s more upbeat and high spirited than he has been the whole time I’ve known him. The Supra isn’t running yet, but we recently moved it to Collins’s house, with his bigger garage and every tool ever sold. Because now Reuben can leave the house whenever he wants.

Visit registerme.org today and sign up to be an organ donor.

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