Cystic Fibrosis and “The Fault in Our Stars”

About a year ago CNN brought us the story of Dalton and Katie Prager, two young adults with cystic fibrosis who met on the Internet and went on to get married.

Their story, drawing plenty of similarities from the book and movie The Fault in Our Stars, has captivated a nationwide audience thanks to several different media outlets and the creation of a Facebook page with thousands of followers.

Unfortunately, that story came to an end today.

Katie Prager passed away from complications due to CF early this morning, while Dalton passed away only a few days ago after just as long of a fight with CF. From CNN:

Katie Prager, the wife in the real “Fault in Our Stars” couple, died Thursday after complications from cystic fibrosis and a lung transplant. She was 26 years old…Her husband, Dalton Prager, died just days earlier, on Saturday, after suffering from the same disease. He was 25.

Their story is one of courage, love and tragedy. Here’s a little summary from CNN:

Katie and Dalton met on Facebook in 2009, when they were both 18. Katie noticed that Dalton’s mother had posted a photo of Dalton in the hospital…Messages between the two flew back and forth. They realized they were falling in love, but Katie’s doctor urged her not to meet with him in person, because Dalton had an infection called Burkholderia cepacia, which can be deadly for people with cystic fibrosis.

Katie ignored her doctor’s warning and decided to meet Dalton in person. Their love for each other was validated the moment they laid eyes on each other with a kiss. From there, things moved pretty quickly:

Katie caught Dalton’s Burkholderia cepacia infection immediately, she said…

The couple wed less than two years later, and despite their infections, they were relatively healthy for the next few years…In 2014, the infection got the best of their lungs, and both Katie and Dalton entered the University of Pittsburgh Medical Center together to wait for new lungs. Dalton’s came first, and on November 17, he had his transplant. In July 2015, after a long fight with Medicare, Medicaid and her hospital, Katie got her transplant, too.

From there, things started to complicate and spiral downward. Dalton faced post-transplant lymphoma, beat it and then succumbed to pneumonia and a viral infection. Katie on the other hand seemingly struggled as soon as she was transplanted. After months of suffering and then returning to the care of their respective families, CF finally took them.

Their story is one of true sacrifice.

It’s also one that is incredibly complex and makes me question some of the motives behind it.

I know exactly how they felt when they first met each other. I can totally put myself into that situation. If I talk to someone with CF for the first time, regardless of who it is, I feel like I’ve known that person for 15 years. I’ve connected with dozens (if not hundreds) of people with CF through Facebook. There’s something inherent in the struggle of CF that creates the instant connection, but I always go out of my way never to meet these connections in person.

I look at my podcast with the wonderful Julia Rae. Julia and I met on Facebook in January and have become fast friends who talk nearly every day, yet we’ve never actually met in person. Hell, I’ve even set her up on a date with one of my college roommates (God knows how that worked out). The reason we’ve never met, though, is because of the threat of cross infection.

I’ve explained what cross infection is before in a blog post, but I want to revisit it.

Cross infection in cystic fibrosis is when two people with CF share a bacterial strain with each other, much like two random people can give each other the common cold on the subway. That’s a simplified definition, but the science is similar.

It is a very serious problem, one that is very scary for people with CF in an age when antibiotics are losing their effectiveness by the day.

Now I know I am going to have an unpopular opinion here, but I feel obligated to share it to at least create a conversation. Dalton and Katie’s relationship created a really dangerous precedent for people with CF. I wholeheartedly believe that people with CF should not be near each other, nor should patients follow in Katie and Dalton’s example. The risk that comes with cross infection is too great, and it is one that is not talked about enough in the cystic fibrosis community.

I’m not one to say that what Katie and Dalton did was wrong; they are entitled to their own choices and decisions as any Americans are. In a lot of ways, love is blind to anything else going on in the world. I’m sure what they had was incredibly special and not something that could be replicated anywhere else.

In fact on a personal note, I know that I probably never will be closer to anyone than I am with my friends who have CF. The bond that I share with those friends is incredibly tight and truly unique because our lives are not of the norm. People with CF have extreme feelings of loneliness, stress, anxiety, and concern. Those emotions can weigh heavily on a person, and sometimes it’s easier to share them with someone who just gets it.

The problem that I have here, though, is twofold. First it’s a clear case of irresponsibility that has been romanticized. When I first read the original article on CNN last year my heart sank. I could not believe what I was reading, and because of that, this story has been eating at me for almost an entire year now. Through the course of my entire life, I have been told that cross-infection can be a killer. Unfortunately, Dalton and Katie’s relationship proved that.

My parents and doctors have drilled into me the importance of steering clear of other people with CF since I was a child. Because of my line of work, there are situations when I do have to interact in person with other people who have CF, (with the maximum amount of precautions are taken, including chemical level surgical masks), but I make sure those times are few and far between. In cystic fibrosis we deal with some of the most dangerous bacteria on the face of the earth (with B. Cepacia being at the top of that list), and it has to be of the highest priority for people with CF to make sure these infections do not spread.

I have a really close friend with CF who is getting married next week – we’ve known each other for over a decade and I can’t go to her wedding. I would never put her in a situation that would be dangerous for her on her wedding day. I just can’t do it. I have been using antibiotics for nearly 26 years, and quite frankly, that complicates the way I treat my CF, and it would complicate her life if she contracted the bacteria harbored inside my lungs. For that same reason, too frequently do I find myself telling parents of newly diagnosed kids that I cannot meet them in person and act as a mentor. I can’t imagine being the reason for someone else getting sick as a result of the spread of my personal infection.

My second problem with this entire story is that it is a public health concern. It is my responsibility as a cystic fibrosis patient to do everything within my power to play a role in the elimination of antibiotic resistant bacteria. That means taking antibiotics in a responsible and effective way. Life with CF may not seem fair at times, and I’ll be the first to tell you that there are times when it is incredibly difficult, but that doesn’t mean I (along with every other patient) can’t live up to the challenge. Interaction between people with CF creates a breeding ground for infection to spread.

As I have said a bunch of times on this blog, antibiotic resistance is the single most important crisis facing mankind.

The science behind this, while complicated, is pretty straightforward (The Cystic Fibrosis Foundation has a pretty detailed look at the science).

I think it’s important for people to live in such a way that provides the maximum amount of opportunity for prolonged success in life. The risk inherent in cross infection between people with CF does not promote success in life.

I have the utmost respect for Dalton and Katie as they had to know what their lives surely would have in store for them after they made the decision to be together. Their relationship is quite the example of love trumping any other feeling, thought or emotion in the human body. In my opinion, their courage is unrivaled. You can learn more about their journey on their Facebook page.

I totally understand the importance of two people with CF developing a friendship – in fact I encourage it 100% – Facebook is great medium for it to happen. There is so much that patients can learn from each other, perhaps more than any textbook could ever hope to teach. Please, though, do not take it to a physical extreme. That is for your own safety and that of other people around you.

I plead with the cystic fibrosis community to play its role in the fight against the spread of infectious disease. It is your responsibility to do your part.

Main image: oliver.dodd spills pills pills (antibiotics)/flickr