Cystic Fibrosis Cornerman

The story of my wife's fight with cystic fibrosis, lung transplant, and what I learned from it all.


January 2020

Projecting confidence

It seemed like all the alarms in the world were going off at the same time. Rebecca’s Oxygen levels were plummeting despite being on a ventilator and ECMO (a machine directly oxygenating her blood). The ICU nurse was visibly rattled and I could see she was tearing up as her shaky voice yelled for a doctor. I stood just out of the way with Becca’s mother and sister watching helplessly as they worked to save her life. This was the scene in early June 2015 on a particularly challenging day leading up to transplant.

I remember watching the attending physician come in with a completely calm demeaner and serious expression. He spoke clearly and succinctly. He instructed the perfusionist controlling the ECMO machine to change some settings. He then ordered the nurse to give her a blood transfusion. As the nurse rushed around getting this together she continued to raise her concerns but he firmly told her again to give her the transfusion and then explained that the hemoglobin that she would be receiving would help to carry the oxygen in her blood. He also explained that it was not dropping as so quickly that they couldn’t respond.

His presence was calming because he was calm. His clarity and directness showed his knowledge and experience while none of us questioned whether he was doing the right thing. In retrospect, there were several things that projected his confidence which in turn inspired our confidence in him. The first was his presence. It was informed by his posture, tone, and purposeful movement which made it clear that he was not going to run around and panic like others were doing. The second was a clear expertise since he was decisive and direct. The third was that he came across as oddly optimistic. Perhaps it was his experience but it seemed as if he wasn’t panicked because he believed that she would be ok if there was a proper response. We also wanted to believe that the outcome would be positive so watching his assessment of the situation reinforced that belief and drove near immediate alignment.

Fortunately, we don’t all need to step into life or death situations every day but I took with me those three characteristics that he showed in those moments. He’d immediately calmed our already emotionally exhausted group huddled in the corner with his presence, expertise, and optimism. And in every demonstration of confidence that I’ve noticed since, those three elements were always front and center.

Emotional Intelligence in Practice

“Not education. Not experience. Not knowledge or intellectual horsepower. None of these serve as an adequate predictor as to why one person succeeds and another doesn’t.” This statement from Patrick Lencioni is referring to the idea that emotional intelligence (EQ) is the greatest predictor of success. The term EQ is relatively new in the past 30 years but the concept isn’t. It is the idea that by being aware of your own emotions and those of other people, we can interact more effectively and drive the results we want.

I learned this concept at work, but gained a much better understanding in the years that followed. On its face, it isn’t a major revelation. For instance, when someone is worked up that may not be the best time to present your new groundbreaking idea. However, I truly learned to appreciate it during our time in the hospital. On days when Rebecca was feeling down, I learned to focus on all the positive supportive gifts and cards she had received and that I had placed around her hospital room. Though I might have wanted to give her a pep talk and get her doing more physical therapy to improve her health and chances for transplant, I learned that maybe it would more productive if we focused on her comfort and state of mind.

Emotional intelligence consists of personal and social competencies. Personal competencies are both self-awareness and self-management.  So as I looked at the situation of Rebecca in her hospital bed I had to recognize that I was desperate to see her health improve and my tendency was to promote any efforts to build up her strength. The two things I REALLY wanted her to do consisted primarily of eating and physical therapy.

Social competencies on the other hand involves social awareness and relationship management skills. Much of the time what she wanted was to be more comfortable and to get some rest. With that context and 17 years together, I was in a decent position to recognize not only when she was growing concerned with something, but what might comfort her at the time. So, if she was emotionally exhausted and I wanted her to do PT I might make a deal that I’d rub her feet while she took a nap but then later that she would so some of her standing exercises. This recognition was key to developing a solution she would agree to.

As much as I wanted to, I couldn’t constantly push her to do her exercises or negotiate for them in every situation. If I did that she would have begun to see me primarily as that person. I also couldn’t only rub her feet if she would to PT in return, then every interaction would begin to become transactional. That is why the relationship management piece in my mind is the trickiest. The way we made it work was to put each other first and focus on all elements of the relationship. I needed to try to improve her day, better understand what she was feeling and going through, and even help her sort out her scattered sedation-impacted memory.

In the end, it tied into the idea that each day mattered, whether in the hospital or outside of it. That we weren’t looking for Rebecca to get better so we could live our lives, we were living them right then and there. The hospital can be an emotional place so there is no better place to practice emotional intelligence then right there in your room. Of course, none of this is groundbreaking, it’s kind of common sense. But some people get so caught up in achieving a goal that they lose that connection with the people involved. The investment of others is what makes the most challenging goals possible and why it’s no surprise that EQ is such a powerful predictor of success.

How do you prepare for the unpredictable?

When Rebecca went into respiratory failure it was not a surprise and it was DEFINITELY a surprise. What I mean by that is that someone with cystic fibrosis that has a lung function in the 30-40 percentage range is at high risk however up until even a few days before this, we felt like she had more time. Though our assessment of the specific date was off, our understanding of what was to come was unfortunately not. So as much as we could have or maybe should have predicted this, it was unpredictable.

At 37 years old, Rebecca was on the older side of people with CF. Months before her decline we discussed her cutting back her hours at work so not to push herself too hard. The fact that we even had this conversation suggests that we knew there was a looming risk. Fortunately, since we knew this we gave more thought to preparing for an eventual outcome.

When given the option through her company to purchase an added insurance if she became unable to work, we gave it serious consideration. We decided to opt in to their disability insurance (DI) policy even though Rebecca was healthy when we signed up. We had no idea of the decline we could expect in the coming year.

Over the first weeks of her time in the coma, I don’t think I thought about it once. However, when I began to realize that I might need to leave my job, I was thankful that we had it. It didn’t solve our biggest problems but it was definitely a relief when I remembered we had it. And when we moved up to Pittsburgh for Rebecca’s transplant, I’d already had to leave my job. The income from her DI helped us pay for medical care, a mortgage in Cincinnati, and our rent in Pittsburgh.

I’ve realized that I don’t need to be perfect at predicting things but it’s worth taking the time to think through what is to come and what may possibly help us through. If we can do that then we might be more prepared than we realize.

On which date do you mention cystic fibrosis?

As the longtime spouse of someone with cystic fibrosis I try to share my experience with those earlier in their journey. One question that has come up repeatedly from young people with CF is the best time to tell someone about the disease. This is one of the hardest questions to answer but I’ll do my best to explain my logic.

The reason why this is such a challenging question is that I don’t know what scares people away. I only know my reasoning for making the decision that I made to date (and eventually marry) someone with such a devastating disease. Much of it boiled down to the fact that we don’t know what tomorrow brings. I’ve heard gut wrenching stories about people dying on their wedding day or other freak accidents occurring that nobody could have predicted. It’s almost egotistical to think that you know how and when things will end for yourself or anybody else. So, if I get hit by a train tomorrow, I want to feel like I lived life fully in my time leading up to it.

That leads me to the second lesson from Lessons from a CF Cornerman. “Sometimes you have to trust your instincts, take a risk, and not focus on the worst that could happen.” Since we don’t know what will happen, why assume the worst? There could be improved treatments, new surgeries, or even a cure. When I met Rebecca at 20 years old, the life expectancy was 30. When we were 36, it was 38. We’re now 42 and it’s in the early forties. This increase is due to improvements in care and treatment options that has been driven by so many dedicated doctors, scientists, and volunteers. We are closer to a cure than we have ever been. There are now CFTR modulators that can improve the lives of 90% of the CF population as well as the recently announced CF Foundation’s Path to a Cure which promises to bring us ever closer to curing this disease. There was no way of knowing any of this in 1998 when we met. I had to take the first step without knowing where the stairway would lead and I’m glad that I did.

And though I know how important every relationship can feel, if someone can’t handle it, it just might be better off if they left before things get bad. I spent so much time in the hospital with my wife and sometimes it is routine while other times it’s the furthest from that. If I couldn’t handle it and left my wife on her toughest day, there would have been nobody there to advocate for her. At the risk of sounding self-important, if I did that she may not still be alive. To me that is a powerful message about who you surround yourself with. So in my opinion, if someone can’t handle your particular issue or disease, you’re probably better off without them.

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