Read the first pages | Lessons from a CF Cornerman

Preface

The lives of members of a Cystic Fibrosis (CF) family are hard, whether you are talking about the person who suffers from this debilitating disease or someone who simply supports a loved one in the fight. As the husband of a woman with CF, the coughing keeps me up at night, but I do not wake with a sore throat. I have to plan around the breathing treatments, but I do not have to do them. I’m worried during the ER visits, but I do not get poked with any needles. I spend hours in the hospital room, but I can leave to grab a snack. I do not have cystic fibrosis and I cannot take away her pain, so the best I can do is to support her and be in her corner.

My nearly thirty years of experience with martial arts has led to national championship matches, full contact bouts, and a focus on continual improvement. Throughout all of this, I learned that nobody can do it alone. I always had someone in my corner. Whether they were encouraging me, coaching me, or simply being present, their support was critical. A good cornerman offers tactical instruction, but more importantly, knows his fighter. He knows the fighter’s strengths and weaknesses and how to motivate her to do her best. He looks at the fight from a unique perspective and helps the fighter refocus when necessary. But the one thing the cornerman cannot do is fight the fight for her. You dodge and move, get riled up, and suffer with every hit she receives, fully aware that she is the one taking every shot.

I wanted to write this book because I believe that the lessons I learned throughout my wife’s battle with cystic fibrosis can help others. It is meant for those who love and care for a person with CF and those who are caregivers; those who fight CF with the determined attitude that they are known for, those who fight any uphill battle when it comes to their health, and those who dedicate themselves to healthcare. This book is from my point of view, but like a cornerman watching his fighter face down an opponent, that perspective is unique. It is my hope that this book will provide valuable insights to those with any debilitating disease, their families, their friends, their medical team, and their caregivers.

Introduction

It was December 31, 2014, New Year’s Eve morning, and I woke up with an optimistic attitude. I had completed the self-assessment portion of my job performance review the previous afternoon and gave myself stellar marks. With a few days off for the holiday, I had the morning all to myself and planned to be productive. I was going to watch and delete several shows from our ever-growing DVR hard drive. I even planned to do some dishes while I watched. Maybe I would hit the gym then pack some supplies for our New Year’s celebration in the hospital. Also, my wife was in the hospital.

It’s not that I was unconcerned about her current situation, but we had dealt with this so many times before. Rebecca suffered from cystic fibrosis (CF), and when she started to feel sick, the standard treatment was hospitalization and intravenous (IV) antibiotics. This was so common for someone with CF that it was called a “tune-up.” During the past few years, Becca was averaging two tune-ups per year. But 2014 had been a bit more challenging, and this was tune-up number six.

Rebecca was not rebounding as well as she used to, but that was the progressive nature of the disease. We also attributed some of it to the busy year we had—living apart for several months and ultimately moving to the greater Cincinnati area where I had accepted a new position. It seemed like she would bounce back as she always did, if she could just get a minute to rest. We knew that one day she would need a lung transplant, but that was probably not for another couple of years.

In the meantime, it was hard to break from our routine. We both worked full time and made great money. In fact we both had more success in our careers than either of us had expected. She was a Clinical Research Associate (clinical drug trials monitor) with the opportunity to travel to support testing and approval of new pharmaceutical drugs. I had recently changed from engineering management to product management and worked mostly with utility companies in the electrical sector.

Actually, a major factor in the decision to accept the new position was to position myself for a general manager (GM) role and transition Rebecca to a non-working role. For about a year, I had actually been trying to convince her to shift to part time but had experienced a significant lack of success. Becca loved her job and she was good at it.

One day earlier, Becca had been working from her hospital room and I was working at home. We had both finished around the same time and she had told me not to come in because she was tired and planned to catch up on some sleep. This was a bit unusual but it would be good for her to rest. Besides, she would then be ready for our big New Year’s Eve celebration, which would most likely consist of tapioca pudding and a movie on the laptop that we would pause every twenty-five minutes when the nurse came in.

Scanning the DVR recordings, it was clear we were way behind on our shows, and that I had recorded a large collection of movies that I had little interest in watching. Unfortunately, a day of moderately interesting movies and some minor cleaning was not in the cards. My phone rang and I saw it was Rebecca calling.

To my surprise, it was not Rebecca—it was the doctor. I knew immediately that something was wrong because the doctors never called me. Rebecca knew her condition inside and out, knew her medical history, and knew her treatment plans and medications. I couldn’t add anything of value. The only reason for the doctor to call me was because Rebecca could not.

Becca had a very bad night. The oxygen saturation levels (sats) in her blood had declined overnight, despite increasing the level of her supplemental oxygen. This meant that her lung function had diminished significantly. To counter this, they had placed her on BiPAP and brought her to the MICU. I did not know what those unusual words meant, but I knew that things were bad. When the doctor is clearly uncomfortable giving you news, it is bad news. He asked if I was coming in and I said I was. There was something to his tone that suggested that this could be the last time I would see Rebecca. It hit me right in the chest. There was nothing at all ‘routine’ about this tune-up.

I went upstairs to get dressed. I came downstairs without my pants. I went back upstairs to find a different shirt. I came back down to look for my backpack. After what seemed like an eternity (but was probably closer to five minutes) I was marginally closer to being ready to leave. This was when I made myself stop. In that moment I realized that all I had to do was show up. I did not have to bring a bunch of supplies. I did not need to perform any kind of surgery. In fact, I did not need to know what to do. This was the first of many major lessons I learned as this nightmare began:

Lesson 1: Show up.