Cystic Fibrosis Cornerman

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



Author, Engineer, Manager...

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.

No Longer Under Consideration

For a recent role I was told that the General Manager (GM) had no interest in my candidacy because they wanted a “manufacturing focused engineering leader.” The challenge is that I have 11 years in manufacturing focused engineering leadership, a patent in exactly that, and many years as a “high potential employee.” So basically, I did that AND was good at it. It’s up to me to decipher what I’m doing wrong.

I want to say I know my mistake. I want to say it’s because I tried pursuing a GM role while my wife Rebecca, due to cystic fibrosis, got sick at the wrong time. Now bear with me, this isn’t a “woe is me” type of article. Much of my early career was filled with advancements and plentiful opportunities to work in a variety of different roles. I continually became better-rounded by taking on new roles, learning new skills, and meeting a variety of different people. Most of these jobs were in and around engineering, manufacturing, and project management. My successes allowed me to move up in the organization as I earned my MBA and took on my first role as an engineering manager. This was not only exciting but a stepping stone to future opportunities.

With the goal of becoming a GM, I welcomed the opportunity to step into a Product Manager role and gain commercial experience. For years I had worked closely with product management on new product development projects and knew it was the right next step. I worked my way up from running a $60MM to a $200MM business P&L in 1 year. I was working so hard for this level of success so I could comfortably take care of my wife because she would ultimately be unable to work due to cystic fibrosis.

Then Rebecca declined too early. I phrase it this way because we expected to have two more years before she would have to stop working and consider a lung transplant. We had thought about it, talked about it, and saved for it. We were wrong. I remember sitting stunned in the hospital room while she lie there on a ventilator in a chemically-induced coma. A few weeks later I was having a conversation with HR about leaving my company. I knew I needed to be there with her in the hospital room, advocating for her. Even after she woke from the coma, her prognosis was grim and despite making improvements, the first five transplant programs declined to even evaluate her. I started writing a book about our journey called “Lessons from a CF Cornerman.” I didn’t know how the story was going to end. It ended well. In 2015 Rebecca received a lifesaving double lung transplant.

My career challenge at this point was that I only had a few years of product management experience and my engineering and operations experience was beginning to move further back in the rearview. As Rebecca required another surgery and was not yet ready to be on her own, I knew that more time would only make me less relevant. All of those great opportunities that helped me grow as a professional looked like disconnected snippets to a hiring manager that (if I was lucky) would skim through my resume looking for some dates and relevant phrases. My willingness to relocate had worn off but left me in Cincinnati where I had no professional network to speak of. I was out of a job and could not yet return to one.

I decided that if I started my own business I would continue to sharpen my skills. I would just consider it another rotation on my GM career path. Companies often say that they want a strong communicator, with an entrepreneurial spirit, and leadership skills. What better written communication is there than writing a book and getting your blogs and articles published? What better proof than it winning Book of the Year? What better verbal communication is there than joining toastmasters and delivering dozens of speeches at colleges, on radio, and to companies? What better proof than a TEDx talk? What better way to show entrepreneurial spirit than starting your own business with unique products? What better proof than doing so with your own money? And what better demonstration of leadership is there than serving on a leadership board, chairing a professional group, and serving as president for yet another organization?

After many months of networking, customizing my resume, and applying to different roles I’ve become a bit frustrated. For the engineering and operation roles, I have the most experience but it was a few years ago. For the product management roles which I have done fairly recently I’m just short of three years of experience. Like I said before, Rebecca got sick at just the wrong time. The business I started and continue to work diligently on seems to come across as irrelevant regardless of transferrable skills. In the end I’m only guessing because most companies are too busy to email me or have a conversation. The toughest part is that my conclusions are complete guesses since I get little actual feedback.Focus

So why did that GM have no interest in my candidacy and not consider me a “manufacturing focused engineering leader” despite 11 years doing just that? He did because my resume wasn’t good enough. I’m still figuring out how, but clearly it was not. As much as I’d like to focus on my wife’s illness, it happened and I made my choice. Now I have to focus on what’s next. I have to cut down my personal business successes because I’ve found hiring managers are not interested in a demonstration of good communication in this way. That’s just something to tell them, probably as an anecdote, like every other candidate. My accomplishments and transferrable skills are taking up too much space in the wrong place. I need to exercise will power by pulling some impressive accomplishments because even if a hiring manager might see it as relevant, it’s unlikely they will be able to in the 30 seconds that they scan my resume. Honesty is required for continuous improvement both in the workplace and outside of it. To be honest, I was lucky to have a GM read my resume. Unfortunately it did not communicate what I wanted it to.

In the end, I talk to former HR colleagues and read articles but this is all a guess. If I’m lucky enough to get my resume in front of an actual person, I probably won’t find out. If I do get feedback, it’s likely a relevant but canned statement about what they are looking for and I need to read between the lines. I have to figure out how I failed to show them that I was qualified for literally every line in the job description. Somehow a GM missed 11 years of my 18 year career and there’s only one thing I should do next…re-evaluate my resume, adjust accordingly, and try again.

The Path Between Hope and Pessimism

When my wife’s health declined and we didn’t know if she’d be able to undergo a lung transplant, I decided to reject blind optimism and pessimism and chose a third path.

I read so many Facebook comments that stated “things would work out” as I sat in my wife’s hospital room. I wished I believed them. What did they know about Rebecca’s condition and what comes with end-stage cystic fibrosis? It sounded like the blind optimism that you see in memes. You see the words “Just believe” in front of a rainbow or something.

Well, I didn’t believe that things would just work out simply because we hoped hard enough. When Rebecca suffered respiratory failure and was placed on a ventilator, I knew that her situation was dire. At the same time, I knew her drive and her strength would work in her favor. I wasn’t being pessimistic. The funny thing is, whether you’re talking to an optimist or a pessimist, they both think their predictions will come to pass. That’s because everyone thinks they are a realist.

The danger of being an optimist is that blind faith can lead to a terrible surprise because you haven’t prepared yourself for bad news. As a CF spouse, I am reminded every day of the risks to my wife’s health. I watched her on a ventilator for six months, hearing abysmal news about her deteriorating condition. Had I lost her then, it would have been devastating but I doubt that the surprise from it would have been the worst part. Expecting bad news would have not made the loss any easier.

The real danger of blind optimism is that you might fail to prepare for more than one scenario. Had I simply believed that Rebecca would recover, I wouldn’t have worked so hard to get her listed for a transplant. Had I simply believed that she would get listed, I wouldn’t have pushed her so hard during her physical therapy sessions. And had I simply believed that she would get a transplant in time, I may not have said the things I needed to say while she was so close to death. Knowing her declining chances for survival motivated me and provided direction. Hearing that bit of reality from the doctors allowed me to respond and affect the odds for the better.

Conversely, pessimism certainly has its pitfalls. It’s hard to put your all into working toward the best outcome if you’re already convinced it won’t come to pass. And after waking from a six-week coma and finding herself on a ventilator, the last thing Rebecca needed was to see me give up on her. When she was too weak to lift her arm, much less stand, it was my job to motivate her. That says nothing of the fact that thinking the worst (for lack of a better word) sucks. Some of the toughest nights of my life were spent sitting in my empty house imagining a future where Rebecca never came home. Looking back, I can say that fewer of those nights would have been inarguably better. Even if she lost her fight, experiencing those dismal nights beforehand would not have made mourning any easier. Those nights just made it harder for me to get up the next morning and keep trying.

I see the danger of pessimism as lost motivation. Had I simply believed that Rebecca would not recover, I wouldn’t have worked so hard to get her listed for a transplant. Had I simply believed that she would not get listed, I wouldn’t have pushed her so hard during physical therapy. And had I simply believed that she would not get a transplant in time, my negative outlook may have affected Rebecca when she most needed my support and her resolve.

So, what are we left with? Since we already think we are realistic, I propose something slightly different: realistic optimism. The idea is that we can choose to be positive today while staying informed so we are prepared for tomorrow. We can accept harsh possibilities but resolve not to let it sap our motivation. We can contemplate the next steps yet remain present with our loved ones. We can believe in a plan, but not only believe in a positive result.


As CF families, we are constantly forced to walk a line between managing the bad news we receive while striving to remain hopeful for the future. After receiving our fifth consecutive transplant center rejection, I’d be lying if I told you I wasn’t crushed. But I had to choose how I would present it to my wife. “They may have turned us down but now we won’t waste precious time at a hospital that would have rejected us.” We faced a difficult reality but chose to be optimistic. For us, realistic optimism proved, through the toughest of circumstances, to be our best approach to living with this disease and the incredible challenges that it brings. Together, let’s stay realistic and be optimistic because our hard work puts us one step closer to a cure!

Finding Motivation from Short Term Successes

What gets you out of bed in the morning? A question we’ve all heard before that speaks to our motivations and our long term vision. It recognizes that each day takes us one step closer to a larger goal. The question also hints at a more immediate gratification. We could certainly be focused on something that is months or years away but aren’t we most excited about it when the impact is now? Can we recognize our progress in order to increase our motivation? If we can view our objectives as a series of short term goals rather than one large one, perhaps we can capitalize on our enthusiasm to get over the finish line.

In one form or another, I’ve led projects for eighteen years. I started with engineering problem solving, shifted to lean-six sigma, was brought in to manage large capital projects, and then focused on product development. As my responsibilities changed from engineering management to marketing, I began to view just about every ‘effort’ as a project of some sort. Whether the project required many resources or just a few, the focus was to achieve an objective. Project execution requires continuous effort for an extended period of time, along with coordination and cooperation. Above all, it requires motivation to change the status quo.

Leading these projects, I was always aware of the benefits of recognizing short term goals. Calling them out helped to show the team that their work was having an impact and management the progress that had been made. Most milestones were identified at the start of the project and then celebrated when they were achieved. Whether it was a new machine coming online, a product qualification that was approved, or a pilot run that was completed, it was progress to be recognized. These small celebrations were not about the end result, they were about that moment and the progress made thus far.

Coming from this perspective, I felt I understood the benefit but it took some real life experience to recognize the true value of this concept.

After my wife suffered respiratory failure due to end stage cystic fibrosis, effective motivation became a central focus of mine. She was not going to survive without a transplant and because she was so sick, the chances of her getting one were slim.
walk pic
Many project leaders will agree that one of the most discouraging things for a team is working on a project with a low chance of success. Add to that, a high level of urgency, emotional stakeholders, and dire consequences for failure, and it can quickly become overwhelming. Receiving that grim prognosis for my wife magnified all of those factors. The experiences that followed revealed some effective lessons that applied in both situations.

It was New Year’s Eve morning when my wife, Rebecca, went into respiratory failure and was placed on a ventilator in a chemically induced coma. She beat the odds simply by surviving the first few weeks. It was not long before her immobility brought with it severe muscle atrophy. She woke from the coma after six weeks, still on the ventilator and so weak that she could not even reach up and scratch her own cheek. We learned that her only option for survival was a double lung transplant but she needed to be much stronger, physically, to be considered for one. Not only did we need to find the motivation to get through the challenges of the day, we needed to find the motivation to continuously work to rebuild her strength. She needed to be stronger, not only to qualify for a transplant but simply be considered for evaluation.

One thing I’d learned from years of leading projects was that success was rarely about one surprise victory, but about chipping away at a goal. I felt the risk of being overwhelmed by this foreboding challenge in front of us. Henry Ford once said, “Obstacles are those frightful things you see when you take your eyes off your goal.” But what do you focus on when your goal is so far away? Both at work and in the hospital, there were many steps between where we were and where we wanted to be. If we could recognize each of those steps for what they were – successes – then the journey itself could provide motivation to keep us going. So when Rebecca was able to stand with the help of a walker, we recognized that as a victory. When she became strong enough to take a few steps, we saw that as a victory. When she walked 300 feet in one session, we knew that as a huge victory. Though it was unlikely that a transplant hospital would list someone in Rebecca’s condition, these short term successes motivated us to keep working.

I have to admit, in the beginning I was celebrating these milestones alone. Before she had gone into the coma, she could walk, talk, and breathe on her own. Now she could do none of this. One night after seeing all of the hard work she had done, I told her I was proud of her. She said,

“I believe you’re proud of me but I’m not proud of myself.”

It was hard hearing her compare herself to an impossible standard. I needed to address that ‘standard.’

At work, I had often seen the tracking of metrics as a necessary evil. A way to communicate with the team and with management that we were on track or to course correct if necessary. In the back of my mind, I feared it took time away from making more progress. My experience in the hospital changed that perspective. I found that tracking her metrics was motivating for us. It helped us recalibrate her expectations from the impossible standard she had for herself to the real world gains that she was making. I would highlight how many exercise sessions she had completed that week. I’d remind her of the number of sets and reps she was able to do of various exercises. I would also stress the walking distance improvements she had made. And as it turned out, walking wasn’t just an exercise; it was a demonstration of her strength. Much in the same way that our teams showed management our progress, she was showing potential transplant hospitals that she was driven. I witnessed firsthand as this new baseline, or expectation she had for herself, became a motivating factor.

Those little victories got us through some tough news. She experienced a partial collapse of her right lung…but soon after, became strong enough to pick things off her bedside table. The first five transplant hospitals that responded to us, all declined to evaluate her…but she had built up her strength enough that the sixth agreed to evaluate. After months on the ventilator, her condition declined sharply…but her hard work resulted in news that she was listed for transplant.

So often there is good mixed with the bad. And even if the bad outweighs the good, that is no reason not to celebrate the good. 

After six months on a ventilator, Rebecca received a double lung transplant that saved her life. She’s now 2.5 years post-transplant and breathing strong. During it all, we certainly couldn’t control all of the factors but we stayed motivated to influence what we could. When we walked ten feet, our next goal was to walk fifteen feet, not one hundred. We stayed motivated not because we were so close to transplant, but because we were close to the next step toward transplant. Recognizing short term successes helped us maintain a level of urgency and the feeling that we were having an impact. If this perspective could help us stay motivated through that ordeal, it has value when facing obstacles at work. The best thing we could do at the time was to wake up every morning and try. If it went badly, our best option was to wake up the next day and try again. 

Why My Wife and I Choose Laughter When It Comes to CF

As the husband of Rebecca, who has cystic fibrosis, I’ve been criticized more than once for joking too much throughout our journey with CF. But if there is one thing my wife has taught me, it’s that amazing courage is not improved by focusing on the imposing strength of the disease; it’s magnified by laughing in its face.

When two fighters square off in the octagon for a mixed martial arts (MMA) bout, serious determination rules the mood, concentration fills their eyes, and there is very little giggling. At least, that’s the case for fights I’ve watched. So if this is how the pros do it, then maybe a serious demeanor is the best “game face” for any opponent — even a disease like cystic fibrosis.


As the husband of Rebecca, who has CF, I’ve been criticized more than once for joking too much, although not by her. That was said by an in-law living 1,800 miles away. Meanwhile, Rebecca had been both laughing at my jokes and making a few of her own all along. So, what is the right amount of laughter to shoot for, if any at all?

About six weeks after my wife was placed on a ventilator due to end-stage CF resulting in respiratory failure, she began to emerge from her chemically induced coma. Her very first expression was a smile that broke out as soon as she recognized me. Sedation and bedrest had caused severe atrophy, so we gave her some rolled-up washcloths to squeeze to improve her grip. It was a serious exercise indeed, yet when she got those washcloths, she started shaking them like maracas. Did that make me smile? Yes — but was it strange that after a lifetime of fighting CF, she was doing the opposite of everything we had learned from the no-nonsense MMA fighting and Kung Fu movies I was kind enough to share with her over our 17 years together?

Unable to stand, they used a device called a Hoyer lift to place her in a chair, and she grinned from ear to ear the whole time. And when they set her up in the chair, she pointed her finger like a gun that shot imaginary bullets and began repeating “I’m a badass!” We had to read her lips because she had no voice with her tracheostomy inserted and ventilator running, but the smile on her face seemed to be the definition of a badass.

A tough person makes a tough face, but the toughest person laughs in the face of danger.

As she built up her strength and began to walk again, she would move down the hallway with the ventilator rolling alongside her, a walker in front, and caregivers all around. I joked that we should increase the challenge by placing cones for her to weave through and mini-hurdles for her to surmount. As she improved, I suggested lengthening the hallways because her walking game was TOO STRONG! Though we never hurdled and the hallway size was never modified, exaggerating her improvements was fun. To reiterate the story of her progress, I recounted her new personal records and accomplishments during hair-brushing or massage time (taking some occasional liberties to suggest that she could outrun her neighbor across the hall and suggesting they race for money).

We played music and tried to maintain a positive attitude. I chose to sing more loudly than the Bluetooth speaker so that she could appreciate my soothing (and in no way off-pitch) voice. Among those songs was “Eye of the Tiger” — because who better to inspire survival than Survivor. When I brought in her actual cats to visit her in the hospital, I had hoped that they would demonstrate this “eye of the tiger” and inspire Rebecca to new levels of intensity. However, her cat Paul — afraid of this new environment– stayed on her lap cuddling with her, bringing little intensity (if any) to the situation. Meanwhile, I spent most of this visit on the floor chasing her other cat, Priscilla, and pulling her out from underneath various shelving units. Although the days crawled by like me after a dusty cat, we were making the best of them.

Amazingly, Rebecca received her lifesaving double-lung transplant after 169 days on life support. I’m not aware of anyone who has survived longer on a ventilator after experiencing respiratory failure from end-stage CF.

In the time leading up to this, there were so many things we were forced to take seriously that it was nice to take as many moments as possible to smile. There is no question that my wife is a fighter, but her amazing courage was not improved by focusing on the imposing strength of this disease; it was magnified by laughing in its face. To her — even if CF won the battle — she was going to live her life and appreciate each day, because they belonged to her.

Perhaps that was the fight the whole time … to be present with our loved ones, smile when possible, and laugh in the faces of our opponents.

The 38 Lessons…from my Wife’s Cystic Fibrosis and Double Lung Transplant

To kick of cystic fibrosis awareness month I wanted to share the full 38 lessons I chronicled in my book “Lessons from a CF Cornerman.” Though they are from a very personal experience, I feel they are universally true. For more content visit


  1. Show up. (p. v)
  2. Sometimes you have to trust your instincts, take a risk, and not focus on the worst that could happen. (p. 6)
  3. Pick your battles but argue for the things that matter to you; it is better than holding a grudge. (p. 18)
  4. Be thankful. (p. 53)
  5. Ask a lot of questions and understand that you provide value even if you are not a medical expert. (p. 57)
  6. Sometimes the best way to take care of someone else is to also take care of yourself. (p. 62)
  7. Do not mourn for somebody that is alive. (p. 68)
  8. Two steps forward and one step back is still an improvement. (p. 69)
  9. Understand that things may not be as bad as they seem in the moment, give it time. (p. 76)
  10. Do not take the worries of others onto your own shoulders. (p. 81)
  11. There is nothing to be gained by comparing your pain with the intent to prove you are suffering more than others. You will only demonstrate that you lack empathy. (p. 97)
  12. You have to celebrate the small victories because they add up to big victories. (p. 106)
  13. Every day may not be a good day, but recognize that it is good to have that day. (p. 113)
  14. Listen to what your loved ones want, even if it is not what you want for them. (p. 119)
  15. Look for those things that bring joy and make them a part of your routine. (p. 124)
  16. If you have the opportunity, laugh. (p. 125)
  17. Writing down your thoughts can provide the impetus you need to move on. (p. 130)
  18. A full night’s sleep, whenever possible, must be a priority. (p. 133)
  19. Make the time to maintain an exercise routine. (p. 135)
  20. Plan for the worst, plan for the best, and plan for everything in between. (p. 143)
  21. Be aware that when you get something off your chest it could end up on someone else’s shoulders. Sometimes there is little value in setting the record straight. (p. 150)
  22. There is no way to do everything for someone else all of the time. Try to recognize when and how you are needed the most. (p. 166)
  23. People will respond to what you provide. If you want them to help you stay positive, show them how. (p. 179)
  24. Don’t be discouraged if you fall short. A failure today may be a blessing in disguise. (p. 182)
  25. Try not to complain. Somebody always has it worse. Particularly, try not to complain to them. (p. 185)
  26. Those who are not there do not need to know every detail in real time. Instead, just be present. (p. 196)
  27. There’s a thin line between telling nurses how to do their job and advocating for a loved one. Be aware of it, but know that you can dig your heels in. (p. 225)
  28. Do not hesitate to ask for help. (p. 242)
  29. The risk of being too hopeful then getting let down is a better option than expecting something miserable from the start. (p. 255)
  30. If you feel like you’re losing, keep fighting. You never know when something as simple as a single call can change everything. (p. 256)
  31. Be aware of the mood and try to affect it in a positive way. (p. 264)
  32. To stay motivated, maintain a vision of the future you want and try to imagine living it. (p.267 )
  33. When you realize that someone’s disrespectful actions will continue, address them head-on. (p. 278)
  34. Never underestimate the boost you can get from the support of others. (p. 314)
  35. Mental recovery, like physical recovery, takes time and requires a surprising amount of patience. (p. 318)
  36. The point is not to have a beautiful moment with your loved one on that last day. The point is to have a beautiful relationship. (p. 327)
  37. Even after a relationship is damaged, continue to look for diplomatic routes to resolve issues. Conflict should remain a last resort. (p. 352)
  38. We do not have control of much but we can decide how to interpret events, how we want to view the world, and how to respond to the situations we find ourselves in. (p. 359)

For more content visit

#CFawareness #CysticFibrosis #CF

Excerpt from CF Cornerman…First 3 Chapters (plus Preface and Intro)!!!

Click here to purchase Lessons from a CF Cornerman


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 them to do their 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 them. You dodge and move, get riled up, and suffer with every hit they receive, fully aware that they are 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 and her transplant journey 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, and like a cornerman watching his fighter face down an opponent, this 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.



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 rewarded myself with 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.




Homework for Dating


Rebecca and I had learned many lessons prior to this point as well. We had been together for almost seventeen years and, like any relationship, there was a learning curve. We had met at the University of Connecticut in January of 1998. Rebecca told me early on in our relationship that she had CF and asked me if I knew what it was. I told her of course I did…but…perhaps I didn’t remember all of the specific details so it would be fine if she wanted to refresh my memory. Okay, technically, I had no idea what the disease entailed but I had heard of it. Probably. I was certain that she could not see through my façade.

She saw fit to provide me with an eight-page technical article on the disease. This is the challenge with dating a cytogenetics major. I had not previously needed to do homework to date somebody, but she was worth it so I gave it a read. Being an experienced engineering student, I knew how to portray understanding and when I discussed the article with her, I was sure to mention the CFTR gene and its effect on protein production. She was quite impressed.

I learned that cystic fibrosis is a genetic disease caused by the body’s inability to correctly produce a certain protein. This protein, called the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR), is responsible for transporting sodium chloride across cell membranes. As a result, the mucus that the body produces is thicker in someone with CF and causes damage to several organs.

The pancreas for example, often does not release digestive enzymes with food so people with CF usually need to take these enzymes in pill form with their meals and snacks. Even with that support, their bodies often do not absorb enough nutrients from their food and they can be smaller and undernourished. In some cases, like Rebecca’s, they can develop CF-related diabetes (CFRD) as the pancreas can no longer secrete sufficient insulin to counter their carbohydrate intake. She developed this at sixteen years old and had to manage it closely every day.

The mucus in the lungs is also thicker and more difficult to clear (cough out) resulting in an ever-present cough and frequent lung infections. This is the driving factor behind many of the hospitalizations and the need for IV antibiotics. I always felt like I could pick her out of a lineup blindfolded because I knew the sound of her cough so well. It had a base that kicked in about a half second after it started followed by a long exhale.

The sinuses are also impacted, often developing polyps and infection. For Rebecca, this has led to severe headaches and over a dozen painful sinus surgeries. As a result, she lost her sense of smell, requiring me to smell all of her leftovers (including nasty food that I do not like) to inform her if they are still good. This is a burden that I have to shoulder alone.

The life expectancy for someone with this disease has increased significantly over her lifetime, in a large part due to the efforts of the Cystic Fibrosis Foundation (CFF). When Rebecca was born, she wasn’t expected to survive until high school. Advances in care and development of new treatments and antibiotics have continued to prolong the life expectancy of people with CF. By the time we met, her life expectancy was around thirty.

To inherit cystic fibrosis, you must receive a mutated CFTR gene from each parent (the condition is recessive). Parents of someone with cystic fibrosis may not have CF themselves, but each carry at least one copy of the faulty gene. There are different severities along with various mutations of the disease. Rebecca has two copies of the most common mutation, Delta F508.

Becca was able to tell me her specific mutation because she had it tested. She had a strong interest in human biology driven by her own illness. She majored in cytogenetics and molecular biology, graduated Magna Cum Laude and was one of thirty University Scholars at the University of Connecticut (UConn). In other words, she was wicked smart, which explains why she wanted to date me.

We were halfway through our junior year when we met and had great chemistry from the start. We attended UConn and lived in a group of dorms affectionately called The Jungle. We met at a floor party on the day my niece Gabrielle was born. Apparently, Becca liked the fact that I was quite excited about this and bragging about my niece at the party.

This particular night, my friend Rui was “working on” Becca’s friend, Melissa, and his efforts resulted in a group of girls partying on our floor. Contrary to logic, our studly group of friends did not often have large groups of girls on the floor.

During that first night, Becca and I learned that we had matching 1990 Chevy Luminas (surprisingly the least stolen car in America), she learned that I was a bouncer at the Civic Pub (the coolest bar on campus), and I learned that she liked to drink White Russians and had CF.

Over the next weeks, we met for coffee, had a few dates, and came to know each other’s friends better. My favorite times were the meals. I distinctly remember going to brunch early on and thinking she would be surprised by the amount of food I had taken. I had two overloaded plates and four drinks (small glasses). But when we returned to our table, she had just as much food as I did! I looked at this girl who was 105 pounds (literally half my weight) and remember thinking, Who is she trying to impress?

I knew there was no way she could eat that much food and as I finished my first plate, she was only halfway through hers. She was just cutting tiny pieces, chatting, taking her time. I could not tell if she was slowing down, but it seemed like it. By the time I finished my second plate, she was finishing her first. So then I just sat there watching her chip away at it one little tiny piece at a time, just cutting, biting, and talking. When she was halfway done with her second plate, I was thoroughly impressed and began to wonder if she could actually finish it all. She just kept going! Before I knew it, she was sopping up the last remnant of syrup with her last piece of pancake, and it was done. Simply amazing.

Back in her room, I was surprised to find she had Slim Fast shakes. I learned that she used to drink them with meals for extra calories. She also had high-calorie Scandishakes that she would mix up with whole milk or cream. She gave some to our friend Big John when he broke his jaw during intramural softball and had it wired shut.

She began sitting at our table and my other friends got to know her. One morning, she came to the table with one plate of breakfast foods and a second filled exclusively with bacon. My friend, Norm, looked at it and asked so the rest of our group could hear, “Is that a full plate of bacon!?”

To which Bec replied without pause, “Shut up, Norm!”

“Hold on, that plate is piled with only bacon! You must really LOVE bacon.” Norm said as he poked at her some more.

“You shut up, Norm. So…I like bacon.”

“You must like it a lot.”

“I do, and I’m going to eat all of it.” And she did!

Yes, Becca fit into our group pretty well. Actually, that exchange became a running joke between her and Norm who always offered to make bacon for her when the opportunity arose.

It was greatly entertaining to be with a girl who was not sensitive when it came to food or her weight. Her strong love for Ben and Jerry’s New York Superfudge Chunk inspired my first nickname for her—Superchunk. Though she did not like it in the traditional sense, it did not seem to bother her. To me, she was this little superhero who could eat whatever she wanted, was stronger than she looked, and was smart and spunky to boot. We just clicked.

The fact that we got along so well made me worry that she was the one. Early on, I had to make the call whether or not I should go through with a relationship that if successful, could end in heartbreak too soon. Thirty years old seemed like a long time away from twenty…but not long enough. I imagined dealing with the pain of loss and becoming a middle aged widower having to start my life over. That seemed scary and tragic. At the time, I thought early thirties was middle aged…but regardless, it was a very hard decision for me.

Was I assuming too much? Maybe it would not last that long. However, after a few short months, we were spending all of our free time together and not dating other people. I imagined breaking up and feeling like she was the one who got away. That was the point when I figured out the first of many lessons. With a lot of introspection, I decided that a more serious relationship was worth the risk. I did not want to be plagued with regret. I had figured out what I wanted.


Lesson 2: Sometimes you have to trust your instincts, take a risk, and not focus on the worst that could happen.


Becca had previously expressed that she was not interested in a long-term relationship, but being an expert on women, I understood that she was sure to change her mind. I had come to the conclusion that we should move forward. I knew she was quite smart, so I felt that, logically, she would come to the same conclusion. Having sorted this all out, I had the conversation.

Couple1 98Unbelievable as it was, she turned me down. She had just come out of two back-to-back long-term relationships and would be leaving for Virginia at the end of the year. This would be a six-month clinical where she would work in a laboratory for some relevant real world experience. She was determined to not have the ties and complexities of a relationship when she left, so we continued to date, keeping the status quo.

As the spring semester came to a close, I knew that I did not want to commute ninety minutes up to Storrs if we were not serious. I could meet someone local, save gas, and take advantage of the fact that my license would soon tell the world I was twenty-one. So on spring weekend, instead of heading to a kill-a-keg party together like we had planned, I went there with my friends and gave her a call from the party. It wasn’t that far off campus and she could just meet me. She was…displeased. She did not come out that night and that was fine with me. The plan was in motion.

It was an easy way to start the breakup process. I decided that I was not going to drive up from Brookfield every weekend, so we might as well end it when the semester ended. I would be a little less agreeable, she would get annoyed with me, and then I could break it off nice and clean. It was a flawless plan.

Well, it was a nearly flawless plan. The next day, I felt guilty so I bought her a flower and apologized to her. My intentions had not changed, however. When we arrived at my place, I started “The Talk.” We were going to be living apart during the summer. We would both be busy with work and friends. She was leaving for a clinical shortly after that. Then we would be living at a distance for over six months and we had not even dated that long. It was all coming out so well until she said, “OK. Let’s do it.”

“Uhh…let’s do what?”

“Let’s be exclusive. Let’s agree not to date anyone else.”

I was confused and unprepared because I had not planned for her to throw a curveball halfway through my well-rehearsed, brilliantly executed breakup speech. I had intended to let her down nice and easy (and maybe stay in touch for when she returned from clinical). Needless to say, my nearly flawless plan failed. Or I suppose you could say that my original plan succeeded. Yes, let’s go with that.

Part of what I liked about her was her attitude. She had dealt with so many obstacles in her life yet she was unfazed. Once she left for college, she was on her own and self-sufficient (and had been since she was eighteen). She worked to pay her bills, earned scholarships with her academic performance, and still found time to hang out and enjoy life. She would get her college degree even though the math suggested that she would not live long enough to pay it back. She was determined to achieve her goals.

As in any relationship, the longer we were together, the more I learned about her motivations and who she was. For most of her life through college, Becca had stayed relatively healthy. She dealt with mealtime pills (digestive enzymes), insulin injections, breathing treatments, and coughing fits, but she managed to live an active life. She was incredibly motivated and focused on her academics. This was even more impressive after hearing her story.

Rebecca was born in Milford, Massachusetts, in 1977 to her mother Brenda, who was sixteen years old. Becca’s father Scott was only three years older. In her first months, Rebecca was diagnosed with “failure to thrive.” She almost died and was diagnosed with cystic fibrosis at six months old. At ten months old she weighed 11 pounds and was 24 inches tall (the size of an average two- or three-month-old). At less than a year old, she had experienced pneumonia, a pneumothorax (collapsed lung), and sepsis (organ injury from infection).

By two years old, her parents had divorced and she moved to Florida with her mom. It was there where her mom married Pete and her sister Jessica was born. Becca grew very close to him and he treated her like his own daughter. She always reflected on this time of her life with affection—except for the heat and sweating. Florida is damn hot.

She described herself as precocious and explained that she would always carry a purse around filled with “proper things.” She would make her sister play school and office and was convinced that she was the reason why her sister hated school.

When Becca was seven, Brenda and Pete divorced, which was tough on her. Fortunately, visitations with Pete continued for both her and her sister which helped to ease the transition and provide some stability. She had grown extremely close to him and thought of him like a dad (rather than as a stepdad).

At ten, Rebecca was given the choice to stay with her mother in Florida or move in with her biological father Scott and Viola, her stepmother, in Maine. She chose Maine, partly because the situation was more stable. She remained there through high school. During the summers, she would often visit her mother, who had remarried and moved to Idaho.

Living in Maine was a major change from Florida. Her father and Vi were very religious and often strict. Scott was a quiet man who had learned the farrier trade (shoeing horses). This is tough work in the cold winters and he often put in many hours. Vi stayed home and was very involved with Becca’s upbringing.

Becca was a good kid but often butted heads with Vi. She had come from a much less rigid environment and now she was not allowed to listen to her favorite Kenny Rogers and Heart cassettes–only Christian music. She had many chores maintaining the house along with taking care of the horses. In school she managed to maintain all As and, despite her lung disease, excelled on the cross country team.

From a young age, Becca developed a strong focus and the character that would shape her into the woman she became. In addition to all of her medical issues, Becca had a speech impediment. She had worked to overcome her stutter since childhood but still had good days and bad. Then at sixteen, she was diagnosed with cystic fibrosis related diabetes (CFRD). She became insulin dependent. She now had another daily challenge to face.

She struggled with the fact that she did not have the same social freedoms that other kids her age enjoyed. At one point, Vi told her she could not attend her senior prom with her boyfriend. She was relieved when her father stepped in and allowed it.

When describing her upbringing, Rebecca was always sure to mention that the stability of her home in Maine was good for her. She never regretted taking the steady route because she knew it was what she needed most at that time.

While Bec was in high school, her mother had two more children, Jordan and Hannah. Rebecca was thrilled at the idea of a little brother and another little sister. Though Brenda divorced again a few years later, Bec made sure to call them and send gifts on every birthday. She had a sense of responsibility that was impressive. By the time of her high school graduation, Becca was more mature than most others her age. She was determined to pay her way through college, and was completely independent once she arrived at the University of Connecticut. She had received several scholarships and student loans. She also got a part-time work-study job during the semester and worked full time over the summers. She was taking care of herself at eighteen years old while taking a tough course load and excelling. She was a force to be reckoned with.

At the same time, Brenda struggled through several failed relationships, turbulence at home, and the subsequent loss of custody of Jordan and Hannah. This created a challenging environment for Rebecca’s teenaged sister Jessica. After hearing some concerning stories from Jessica about their living situation, Rebecca did not want to cross her mother, but felt she needed to do something to watch out for her sister. She knew that Jessica should not stay in that environment and required something more safe and stable.

Though they had lived apart for several years, Rebecca adored her sister. They were different in many ways because Jessica was relaxed and more of a free spirit while Bec was very goal-oriented and focused. They were like a mini female Odd Couple.

Knowing that it would risk her relationship with her mother, she told her stepdad Pete about the situation. He immediately stepped up and took Jessica in to live with him in St. Louis. It took a lot of courage for Becca to stand up for Jessica and to involve her dad, but she saw it as black and white. Even though she was young and barely on her own, she was resolute and knew what she had to do. As a repercussion, her mother did not talk to her for about a year. Becca dealt with this in her typical, realistic fashion. She missed her interaction with Brenda, but knew that her actions were necessary. It was soon after that I met Rebecca. We did not talk about it much since Bec knew she had done nothing wrong and was so focused on what she needed to do at college. Meanwhile, she continued her efforts to stay in touch with Jordan and Hannah and was even able to plan occasional visits with them. I remember learning her story and being surprised that she was so well grounded.

Just before our one year anniversary, she left for her clinical in Virginia. It seemed unfair that she needed to pay full tuition (even though she was not taking traditional classes), work a forty-hour-per-week clinical for no pay, and then get a part-time job on top of that to cover room and board. She managed it by pushing herself past her limit. Up to that point, I knew her signature cough but I had not really seen her sick. Her body was tired from working so many hours while getting too little sleep. As the spring arrived, I listened over the phone while she coughed so much more and had almost no voice. I tried to convince her to work less but as I would come to learn over the years, I am less convincing than I give myself credit for.

Pushing past limits makes for great inspirational posters, but loses its luster when your girlfriend ends up in the hospital with pneumonia 400 miles away. I traveled down to visit her in the hospital and was surprised to see how truly sick she had become. I remember walking toward her room and seeing an incredibly skinny arm reach up toward a nurse. As I got closer, I realized it was Becca. She was petite to begin with, but the weight loss from pneumonia made a significant impact on how she looked. I realized that I could not leave her there. She would work out the details of the final weeks of her clinical with UConn and the institution, but her health was first and foremost.

She was discharged with home IVs and I asked my parents if she could come and stay with us for the last weeks of the summer. They had only met Rebecca a few times at that point but they were happy to help. They knew her story, clicked with her personality, and had a great deal of respect for her. As soon as she was healthy enough, I loaded up our two Chevy Luminas (mine being the Eurosport edition) with all of her things. We set up Bec with her IV antibiotics and I duct taped her insulin pen to the AC vent (which I later learned was unnecessary) and we started the drive back to my parents’ house in Danbury.

Typical expectations would be that a twenty-one-year-old college student renting a pre-furnished apartment would not have a lot of things. This was not the case. Rebecca had THINGS. She loved to shop and get discounts and introduced me to the term “retail therapy.” Needless to say, the packing of our Luminas was an amazing engineering feat, only possibly rivaled by Edison or Da Vinci. We could even see out of the car windows!

That whole experience drove the point home that getting enough rest was essential to her staying healthy. Over the years, I would see it occur again and again. Her CF exacerbations would often be preceded by a period of insufficient sleep and too much stress.

It was back at my family’s house in Danbury that Rebecca saw her mother for the first time in several years. They had never really settled what had happened, and they had just started talking again. She did not have much money, so my parents said she could stay with us as well.

A peek into Becca’s closet triggered a lecture from Brenda who told her that she was too materialistic and should spend less on her clothes. She compared Bec’s budget to her own, which she suggested was better managed. By this time, Becca had been paying for both her college tuition and living expenses for three years with very little financial help from anyone. Her father Scott helped as much as he could with tuition, but for the most part Becca managed on her own. Brenda was not completely wrong, Rebecca had a few too many sundresses from T.J. Maxx, but it came across as a parent scolding a reckless teenager. Rebecca was an adult who had handled everything life threw at her, and this lady who had not played a prominent role for eleven years was preaching at her.

I prepared myself for the intense Becca response that I had come to know, but it never came. If anyone else had done that she would have told them where they could stick it. Nobody was helping her with her bills and she was clearly capable of managing them. She did not come back with the bold confidence that I had come to expect, she only acknowledged that Brenda was probably right.

Perhaps it was because she had seen her mother so infrequently since she was ten, maybe it was the year of Brenda’s silence, but it seemed that Becca was willing to deal with it to maintain the relationship. Perhaps I was an engineering student and Psych 101 did not give me a full enough arsenal to psychoanalyze their relationship over one long weekend. Ultimately, it was their relationship and I was not about to pry.

In any case, we would only see Brenda one more time before we graduated. She had just gotten married again, and was passing through with her new husband. I cannot remember his name; just that they seemed like a poor match on so many levels. It was clear to me that Brenda was very driven by emotion and impulse. I think this had been good for Rebecca years earlier, when Brenda kept pushing until the doctors diagnosed what was wrong. I did not need to understand Brenda to know that without her, Becca would not be here. Beyond that, she was fun to hang out and have some drinks with. She was quite a character and it was nice to feel that I could talk freely and did not have to watch what I said. We got along well. Interestingly, her actions drew a sharp contrast with those of Rebecca’s. I found it impressive that Rebecca turned out as grounded as she did in the face of such an unusual personality.

Couple2 00Graduation came faster than we could imagine. More time together had meant more time to see how this progressive disease worked. Fortunately, it worked slowly during that time. I saw her through several sinus surgeries, but that was typically less than once per year. It was still tough to hear her coughing fits but I became more used to it with time. Early on, she would comment, “I’m dying.” I knew she meant nothing by it, but her mortality was so much on my mind that the comment was piercing. My mind would instantly flash forward to this perceived future loss. This feeling gradually decreased with time as her situation became part of the norm for us.





Getting Serious


As with any relationship, it is natural to get into arguments or have disagreements over each person’s roles and responsibilities. In that respect, our relationship was no different. We both had very strong opinions but we also did a good job in finding common ground. “Pick your battles” became our unofficial mantra in this area. I felt that in many ways, Rebecca’s illness gave me perspective through these times, helping me to keep my eye on the bigger picture. However, there was still a learning curve.

Initially, empathy for someone you care about makes you want to give them everything they want. The logic is that time is precious and there is no need to waste it arguing about the little things. In the end, it is all little things. As bad as it sounds, I would often try view it from the perspective of myself looking back after she was gone. Would this have mattered? Was it worth arguing about the fact that she wanted to try some new, expensive wine with dinner? It was better to just agree with her and let it go.

That logic would work for a little while, then the feelings of resentment would kick in. When I reasoned that it was not worth an argument, I was also reasoning that it was not worth arguing for my opinion. During times that I took that stance out of guilt or to avoid regret, frustration would build. That feeling could continue for only so long before I found myself re-starting an argument on the subject because I needed to have my side understood. The feeling that I had to withhold my words because she was a delicate flower did not hold water. She did not present herself that way nor did she argue that way. In fact, she prided herself on being tough, as do so many people with CF. She was half of a partnership but I was the other half.


Lesson 3: Pick your battles but argue for the things that matter to you; it is better than holding a grudge.


The perspective that CF brought was that there was little time. We needed to approach each other with respect for the other’s perspective. Maybe we would never see eye-to-eye but if we could develop a running rule, we would be fine. For example, we could try to find new, good wines at the store but when we were out for dinner, we would just find a good pairing. That way it doesn’t have to ruin the next date night.

There is a possibility that these were not groundbreaking relationship developments, but it worked because we worked on it. Ultimately, I wanted to look back at our time together and feel I had given it my best shot and had no major regrets. This may be a morbid way to look at a relationship but whenever I did, I could use reason to guide me toward the best path. It seemed to work for me.

When it came to her health, the most immediate issue was often her blood sugar. Bec put a lot of effort into managing this and she would try to keep her blood sugars in a tight range—80 to 120 mg/dl. She was also very small with little body fat. As I would later learn, this would contribute to her being a brittle diabetic, which meant that her blood sugar could change quickly. Seemingly minor mistakes could have fast and severe effects. She carried a glucometer to test her blood sugar and over the years, used needles, an insulin pen, and finally an insulin pump to manage her injections. Every three months, she would have a blood test called hemoglobin A1c that would indicate how well her blood sugar was controlled.

Low blood sugar was risky and could cause someone to slip into a coma with the worst case being death. If her blood sugar fell too low (hypoglycemia), she would get disoriented or find it hard to concentrate. She would typically know if it was going low but not every time. This was a scary reality and became scarier when considering that it could happen when she was driving. I could sometimes tell it was low when we were talking. If she had a tough time trying to understand a simple concept, we would stop and test.

Going high meant that she was experiencing hyperglycemia (not marijuana). It did not lead to the same immediate concern as a low blood sugar but over time, it could lead to neuropathy (nerve damage) or even amputation of the extremities. Not taking enough insulin with meals was the major cause, but sickness and certain medications—like prednisone or other steroids—would also drive her blood sugar high. High levels made it difficult to gain weight as well. She could usually tell if her blood sugar was high when she had extreme thirst that she could not seem to quench. Though she would do her best to manage it, sometimes she would get focused on work and forget to eat or occasionally eat and forget to take insulin. Forgetting insulin is one thing but I never understood how she could forget to eat. I often remembered to eat hours before I even required food.

When she would go low, she would get to go through the cabinet and find the junkiest, most sugary deliciousness and eat it in front of me. In a show of support, I would also eat whatever junky delight she would discover. Since I attempted to eat healthy most of the time, this was clearly a selfless act on my part.

She had one instance of low blood sugar when I was driving. She argued she would just have some candy when we got home in ten minutes. I stopped anyway and dropped her at the door of the grocery store to quickly grab some snacks while I parked. In my rearview mirror, I could see her walking with an odd limp. I hopped out of the jeep and raced into the store to find her sitting on a bench at the entrance. She had forgotten why she was there. I bought some skittles and as she ate them she slowly came back to reality. I imagined what could have happened if she was driving and decided to go home. She could be in an accident somewhere and even if it was just a fender bender, her blood sugar would just continue to drop. We needed a better plan.

The next day, we went to Costco and bought a case of skittles. We put them everywhere: her pocketbook, night stand, both of our cars. We always had skittles with us and we would bring them out at the slightest sign of a low blood sugar. She came to hate skittles. We eventually switched to juice boxes, but from then on we had a plan.

With college behind us and over three years as a couple, there was a new challenge on the horizon: marriage. I still held one main concern as I made this decision. I knew that with CF, there was a strong chance that she would not be able to have children. I had always wanted kids. Of course if we had problems, there was always in vitro fertilization (IVF). Additionally, if we had kids and she passed away when they were young, I knew it would be tough on them and I would be left alone to raise them. In the end, I knew I had no guarantees that this would not be the case even with somebody else. The only difference was that here I knew the odds. Knowing that we could not plan for everything, we would just have to figure that out when the time came. She was worth it to me, so it was just a matter of when to pop the question.

We both had our plans as far as the timing. I was going to give it a little time and enjoy going out with my friends since we had just graduated. Rebecca had moved into a nice place up in Branford with a roommate, buying me plenty of time to make my decision. When I was ready, I would find the right moment and ask. It was a solid plan.

Rebecca’s plan was similar but had several more specifics. She decided that she wanted a fall wedding. She also determined that she needed eighteen months to plan appropriately, and then presented me with a date by which time I should propose. She had also made it clear that she wanted a princess cut diamond with two smaller stones on the side and a platinum ring. The carat weight was not important, but ideally, it would look “antique-ish.” She said the rest was up to me, though it did not seem like there was much else. She provided me with the specifications frequently and would even quiz me to ensure I remembered the details. Her ring size, however, was provided only once. As the time came closer for me to propose I could not ruin the surprise and ask.

Her proposal target date came and went. When her birthday arrived in June, I thought a mountain bike would be the perfect gift. We could spend time together riding on the trails and it would be a great workout. Surprisingly, she was not as excited about my gift as I had expected. Perhaps it was because she was expecting something else.

Not long afterward, I was ready to buy a ring. The challenge was that I did not know her ring size and could not ask her without arousing suspicion. Like a good engineer, I snuck into her jewelry box with my digital calipers and measured the inside diameters of several of her rings, averaged them together, calculated the circumference, then used an online chart to determine the size. The result did not feel right because the standard deviation was too large and the average was quite far from what I had anticipated. It turned out that they were rings worn on all different fingers. So in the end, I guessed. I went to New Jersey with my brother-in-law Michael, to where he had purchased my sister’s ring. I found the perfect one.

I decided to propose at a party she was hosting with her work friends one Friday night. I had the ring shipped to my sister Rachel’s house and had to pick it up before arriving. She had given me a rose from her garden, some champagne, and two flutes for the big moment. It was going to be a big night with a private proposal and a party afterward to make it public. It was another perfect plan.

Traveling on I-95 on Friday at rush hour was not exactly ideal and I showed up late to an annoyed girlfriend. As I got dressed, she came into her room and started cleaning up after me. She grabbed my shirt and went to put it in my duffel bag. The ring, rose, and all of the goodies were on the top of the bag and she was seconds away from ruining her surprise. As she reached for the zipper, I had to act quickly. I stopped her with, “Why do you always have to clean up? I’ll pick up my own stuff, just leave me alone and let me get ready!”

Success and failure. She tossed my shirt down with a, “Fine!” and stomped out. Good job, me.

The night went on and I knew the time was not right. Between getting a subtle sense of the mood and feel of the event coupled with the fact that she got super drunk, I brilliantly determined that it would be best to delay the proposal and focus on catching up to her buzz level.

The next morning while she was cleaning downstairs, I laid out a rose on the bed and set the champagne and flutes on her night stand. At this point, the champagne was just for show because we were both way too hungover to partake. I called her up and she ignored me, still unhappy about my lateness and attitude the night before.

I asked her roommate to call her and she came right up. She stopped in the doorway, squinting at the bed in disbelief. I pulled her into the room and closed the door. I intended to get down on one knee, but she was so stunned that she was shaky on her feet and looked like she might tip over. As I stood there holding her up, I asked her to marry me, she just cried. I knew that meant yes even though I did not get my answer for a minute or two.

The next year flew by. Even though Rebecca did not have eighteen months to plan the wedding, it was a success. The day came and Rebecca looked beautiful. My best man Norm gave an amazing wedding speech that nobody could forget. The slideshow I put together was a hit. Not a detail was missed and everybody was there. Rebecca danced with her dad and her stepdad. I danced with my mom and had a dance off with my dad. It was perfect.
Couple3 03




False-Starting a Family


We had an amazing honeymoon in Aruba, but not long after we returned, it was announced that the Remington Shaver plant in Bridgeport, Connecticut, where I worked, was being shut down. This meant I would either have to accept a corporate relocation to Wisconsin, or join my recently laid off wife on the couch. We opted for the move.

Becca found a job quickly. She had decided that lab work was not for her and set her sights on becoming a clinical drug trials monitor. She was able to get an entry level position at a company in Madison and after a year and a half, she was offered the position she had wanted.

The University of Wisconsin (UW) hospital provided great CF care and Rebecca was a compliant patient. She did all of her breathing treatments, managed her blood sugar, paid close attention to sinus issues, took her digestive enzymes, while at the same time working full time. It was around this time when she started with her tune-ups. UW focused on prevention and when she would start to feel sick, they would act quickly to put her on IV antibiotics.

At the time, this would happen about once per year. She would go in the hospital for about two weeks and come out much healthier. The only problem was that it is tough to get good rest in the hospital because the nurses come in the room around the clock for a variety of reasons. She would occasionally do these IVs at home. This was much more work on our end (mostly Rebecca’s end) depending on the timing of her meds. She would often have to wake up in the middle of the night to infuse a dose. The benefit was that she was in the comfort of her own home.

My biggest complaint was the fact that she could not slow down. She was supposed to be home resting and she would be puttering around the kitchen, cleaning her office, checking emails, basically trying to check things off of her to-do list. I found myself chasing her back to bed ALL the time. She recovered the quickest when she was getting her sleep and not overexerting herself, but she had a busy mind.

During these tune-ups, they would typically place something called a Peripherally Inserted Central Catheter, or a PICC line. This is a long catheter placed intravenously that allows for infusions for a prolonged period of time. It would be placed in her arm and the catheter, which was about two feet long, would extend to just over her heart.

Toward the end of one tune-up, Becca had to leave for a business trip the morning after her last infusion. She was done with her regimen of antibiotics and ready to get the PICC line out. If she kept it, she would have to flush it daily with saline and heparin (anti-clotting medication). She decided that this was too much of a hassle and that we could pull it out ourselves.

I am not sure where she got this idea but she proposed it to me with a great deal of confidence. “You just have to put pressure on the insertion point and pull it out at a slow consistent rate,” she told me. It took some convincing but I finally agreed to help her with it. She sat on the toilet and I positioned myself in front of her. First I removed the dressing and clipped the stitches holding the end in place. Becca was such a seasoned patient and do-it-yourselfer that she sat there with all of the confidence in the world. I put pressure on the site then started to slowly pull. Then things went bad.

When a little of her warm blood dripped onto her leg, she started to get light headed. She tipped forward toward me with her eyes still open, beginning a slow moaning exhale. I had one hand holding gauze at the insertion, and the other hand pulling the PICC out (at a slow steady pace) so I was forced to catch her between my neck and shoulder. I still had to keep pulling but now in this new position, I loosened my grip on the gauze and more blood started flowing out. Had The Walking Dead begun to air, I would have been more cautious about exposing my neck to her, but her moans were unnerving regardless. I finally got the rest of the line out and increased pressure on the site. I waited and watched while she slowly stopped moaning and started blinking a little more. As she was looking at me I could see her slowly reappear behind her eyes. She was confused, wondering what had happened. There was blood in her lap and all over the toilet. Her PICC line was on the floor as I knelt in front of her in our bathroom waiting for her to be alert enough to tell her, “NEVER AGAIN! I WILL NEVER DO THAT AGAIN!!! EVER.”

“That was weird.” she told me.

“WEIRD?! That was weird!?! Do you know what happened? I will never, ever, ever do that again. That was awful!”

“I’ve turned into a weenie.” She told me.

“You’ve missed my point entirely. If the apocalypse comes and you have a PICC line, we will roam the earth looking for saline, heparin, and alcohol pads because I am never pulling one of these again.” I was stuck in a precarious situation with nobody else around performing a pseudo-medical procedure that SHE had talked me into…and she was reflecting on how she used to be tougher!?!

From that point forward, I stuck to my no PICC line removal stance and have never compromised. Some days when I would think of it, often when she got a new PICC placed, I would proactively remind her of my uncompromising position and that she would never convince me to remove it. She would roll her eyes at me unfazed by my bold stance. I would later learn that she had experienced a panic attack. This info would do me no good but at least I had an explanation.

It was not long after we moved to Wisconsin that we decided to start a family. Rebecca was the first to say she wanted a baby, though she worried about her fertility as a result of CF. She figured the sooner the better while she was still healthy enough. Our main concern was her well-being. Would she be healthy enough to carry a baby and if so, would the pregnancy cause any negative long-term ramifications?

My other concern was her life expectancy. I had to be ready to take on full responsibility of this child at any time. We were twenty‑six and the average life expectancy for someone with CF was in the early to mid-thirties. I needed to determine why I wanted a child. It could not be about appeasing Rebecca because I would ultimately be a single father with all of this responsibility on my shoulders.

I wondered if it was fair to bring a child into the world knowing that its mother might not be around to see it off to school. I reasoned that life is a blessing and that we would do our best for this child. I remembered that they thought Becca would not make it to high school and here we were in our mid-twenties. I also remembered my reasoning from when I decided to get together with Rebecca. It is impossible to predict the future so I did not want that to paralyze myself in the present. Anyone can get hit by a car tomorrow but that should not stop you from living today. We had heard that there were people with CF who were in their fifties and some who had children. We needed to live our lives. I was ready.

We went to her CF doctor and discussed this with him. He told us that there was not any major risk to Rebecca at the time. She was healthy, and as long as she continued to be compliant, he would expect her to do well. He commented on how much help she would need from me which was something I had expected and would gladly provide. He eased our fears about the process but stressed that she would need to let others help her. She was accepting of this and we even talked about the potential of asking her mother to stay with us for a few months after the birth.

We were aware that many women with CF had trouble getting pregnant but we were going to give it our best shot. Rebecca and I were excited about the possibility of a child. As always, she did her research—lots and lots of research. She took temperature measurements to know when she was ovulating, she took prenatal vitamins, went to an acupuncturist…whatever we could do to make this happen, we were going to try. My job was pretty simple but being a good husband, I was willing to “help” when called upon. In fact I had a standing offer of “help.”

At the same time, her mom and sister were trying to convince her not to do it. Despite what the doctor said, they worried that this was going to weaken her and shorten her life. Brenda told her it was selfish of me to push her toward this and Jessica worried she would not accept anyone else’s help. Technically, it was Rebecca pulling me toward this but I suppose the in-law is always going to be the bad guy.

After trying for several months, we recognized that we would need the support of a fertility doctor. The issue appeared to be CF related. We decided to start with a process called intrauterine insemination (IUI). The process itself was simple but waiting two weeks to see of it had worked was draining. They told us that if it did not work by the third try, we would need to try something else.

Then on the first try, it worked! We were so thrilled at the possibility of having a baby. It all seemed so surreal. We started to really imagine what it would be like and we were anxious for the first trimester to be over so we could start to tell people. Unfortunately, our celebration would be short-lived. We lost it soon after, and Rebecca was heartbroken. We tried to focus on the positive side: it had worked. If it worked so easily this time, we were bound to succeed eventually. We went back for a second and third round but to our disappointment, nothing came of it. At this point the doctors told us that our best option was in vitro fertilization (IVF).

We went for two rounds of IVF with no results. We planned on doing a third round, but our insurance would no longer cover the procedure so we didn’t go through with it. It felt like we were so close, but positive results were elusive. Time between procedures had stretched longer and longer because of the time it took to recover emotionally from each failure. We began to realize that we had two real options left—surrogacy or adoption.

I had considered adoption several times and struggled with a final decision. Do I want children? was not the right question. It was WHY do I want children? It took a lot of reflection, but I decided that I wanted children because I wanted a part of us to live on. I also wanted to always have a part of Rebecca with me. I admired those loving parents who chose adoption, but it did not line up with the reason why I wanted a child. Maybe one day those feelings would change, but at that point and in our situation, I did not want to adopt.

The other option was surrogacy. To our excitement Jessica agreed to be our surrogate. We still had some embryos in storage from the IVF sessions and once we were ready, we could pull the trigger. Jessica already had a son Cole, who was now a few years old. She was getting married and told us that she would want to wait until after she had a child with her husband. A few months later, she told us that she had changed her mind. It was tough news to take.

She had conflicting feelings as to the reasons for her decision which included the concern that Rebecca would wear herself out with a child. Rebecca knew that she needed a lot of support with this child but that was something that would have to be taken at her word. I also knew that she would do better as a stay-at-home mom rather than continuing to travel and work crazy hours, particularly because we could help her with a child. On the contrary, when she had to get a report filed by midnight then pack a suitcase for the next day, she was on her own.

Jessica also felt that I should be willing to adopt first. She changed her mind a few more times but ultimately she decided not to do it. This was an emotional roller coaster for the two of us as we switched back and forth from having a plan to not knowing what was next. Our friend Meg also offered and so did Rebecca’s other sister Hannah. It was incredibly selfless for Jessica, Meg, and Hannah to offer to make one of the biggest sacrifices someone could make for someone else. But as time passed we questioned whether this was what we still wanted.

Rebecca had become so much more involved in a career that she loved and I started to worry about our chances of success with the procedure. A surrogate could cost tens of thousands of dollars and after paying for IVF medications, I was in no hurry to gamble on another “chance.” Time passed and Rebecca had more frequent exacerbations and tune-ups. She had little energy outside of work, which consumed so much of her time. We spoke about it less and less as her health began to decline.


Hope you enjoyed the first 3 chapters! Click here to purchase Lessons from a CF Cornerman.

Your Pain Is Not Like Mine

During a health crisis, we can focus on our pain so much that we don’t take time to acknowledge the pain of others.IMG_0702

We walked out of the intensive care unit (ICU) and turned the corner to walk toward the elevator. After too many days of watching my wife on a ventilator in a chemically induced coma from end-stage cystic fibrosis, I had learned that it was necessary to break for lunch.

The lobby was filled with quiet sobs and red eyes, and one voice rang out: “YOU can’t be here!” We were soon blocked by a red-faced man, angrily telling us that this area was closed. He definitely wasn’t a staff member and looked like he was ready to throw down. As someone with a lifetime in the martial arts — as a competitor and an instructor — I was not about to be intimidated by his antics.

I told him, “We are going to the elevator,” and he directed us to walk around. I asked him why and he told me that his sister had been admitted the day before. She had seemed perfectly healthy days earlier and now the ICU doctors were suddenly saying that she would not likely survive the week. As he calmed a bit, he told us again to “Go around …,” and that his family was in mourning.

I thought that this guy was going to have a tough day if he thought he could stop every person walking through the lobby to visit someone in the ICU, but I told him that we would do so if he showed us the way. As we walked, I mentioned that everybody has a tough story in the ICU. Nobody was there because things were going particularly well, and there would be a lot more family members coming to visit their loved ones that day.

I never told him my story because that didn’t matter. His tone started to change as he thanked us and then followed it shortly with an apology. By the time we got to the elevator, he was apologizing, almost profusely. I felt for him even though my wife’s prognosis at the time was no better.

In his world, his and his family’s pain was worse than any other visitor’s. They had the right to the waiting area because they were suffering the most. As the weeks passed, I witnessed this same sentiment at the core of so many conflicts. And nothing good ever resulted when someone compared their pain to the pain of those around them.

Don’t get me wrong, it is good to tell stories in an effort to relate to those going through a challenging situation, but a one-up type of discussion misses the entire point, empathy. And, trying to listen with pure empathy is tougher than it sounds.

Months later, my wife Rebecca had beaten the odds and received a life-saving transplant. Back in the ICU because of complications from stomach surgery, she was again on a ventilator, with me worried for her life.

In a nearby housing facility for patients and family, I found myself chatting with an older lady who had asked why I was there. She related quickly because she had experienced ten stomach surgeries. She began to go on and on about how tough hers had been, and she seemed to ask me questions the only intent of which was to frame her story. As she glossed over my explanation of Rebecca’s internal bleeding, I began getting frustrated, so I mentioned that the surgery was needed to protect her newly transplanted lungs, which had come just in time to save her life after six months on life support.

With a few quick sentences, I had “won,” she didn’t know what to say, and it got a little weird. We were both guilty of trying to one up each other, and suddenly it wasn’t about empathy or learning each other’s stories; it was a competition to see who suffered more. The reality is that nobody wins any of these competitions and when we let it get to that point, we’re expressing that we cannot empathize because we have experienced worse.

The value of these conversations during tough times is to share knowledge and support, and empathize with one another.

We can provide encouragement and support for those dealing with the impacts of medical challenges because we can relate to them on a level that few others can. However, before sharing those experiences, stop to listen and understand first. Even if your experience is worse, that’s not the point. During countless months of interacting with caregivers, in-laws, and strangers, I found one approach always works the best — empathy.

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