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Cystic Fibrosis Cornerman

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

Month

February 2017

Lessons from the Hospital Room that Apply in the Boardroom

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Like most professionals, I’ve read a lot of articles that provide business advice ranging from “Things Great Bosses Do Every day” to “Management Mistakes that will Drive Away Good Employees.” I’ve seen white boards displaying actions that take “zero talent” and drawings of icebergs that clarify what people don’t see. I get a little boost of confidence after reading them because on one level or another, I know those things intuitively.

Their messages are simple encouragement that my perspective makes sense and I am doing the right things. We tend to think that work is work and life is life and never the twain shall meet. However as a seasoned professional, when I found myself taken off-guard by the sudden decline in my wife’s health, I found little motivation in the side-by-side picture of “old vs. new thinking.” Conversely, I believe that there are lessons that we can learn through adversity that translate into the professional world.

Medical challenges and work motivations are two totally different things, right? One involves addressing the things you control…schedules, resources, teamwork…in an effort to achieve an objective. We see an issue and break it down, working systematically to resolve it. Medical issues…well, sometimes bad things just happen. We don’t control it, there’s nothing we can do about it, and no amount of brainstorming is going to cure your wife of cystic fibrosis or magically pull her out of respiratory failure. However, we do have control of some things and my sense is that we are not framing the issue correctly.

Why would you visit a loved one in the hospital? Sure, you are there for moral support. Yet when my wife was in a chemically-induced coma I could argue that she might not require as much of my time – she certainly did not notice me, thoughI still felt I needed to be there. So what value did I really add…? I knew my wife’s medical history. Not as well as she did but better than the new nurse that was randomly assigned. Like a mall security guard, I could observe and report, adding my comments during the morning rounds and providing a clear picture to her doctors. During the day, I could stretch her limbs and move her joints so that she would be more comfortable and in better physical condition when she awoke. When she emerged from the coma, I could help her with therapy so that she had a chance of qualifying for a double lung transplant. Add to that leg shaving, nail clipping, food cutting, and hair brushing, and I found myself having a pretty full day.

So if there are defined tasks, what is the challenge? I simply needed to be positive and encourage her. What stood in the way of completing such simple steps with a smile on my face? The challenge turned out to be dealing with my own emotions and ensuring my response was not the same as my gut reaction. After hearing the news that your wife may not survive the night, the most important “accomplishment” becomes the control of your response. Emotions will flood and initial reactions are involuntary, but the only thing you have a chance of controlling is your response. If you need to take a minute, stop and reflect, remember why you are there, and then suck it up and go brush her hair because nobody in this scenario has it easy.

Be it strangers in ICU waiting rooms or some of my wife’s relatives, I spoke with people who lashed out or acted selfishly. Change it up a bit and that person is the mid-level manager that yells at his employees because a test fails, it is the VP who “goes off” because the quarterly numbers were shy of his stretch goal, it is the plant manager that blames the welder on an issue caused by a bad process. Before you can control the situation, you must be able to control yourself. In a world where the majority of events are out of our control, we must constantly adapt to bad news.

We talk about adaptability all of the time in business but rarely on such a profound level. Continuous improvement, change management is often externally focused. Sure, a conservative engineer might want cringe when hearing about a change to a long-time process but imagine if the things that were changing were significantly more personal. Benjamin Franklin said, “When you’re finished changing, you’re finished.” In business, competitors become more efficient, costs change, and disruptive technology abounds. In the hospital, a committee’s decision to decline a transplant candidate can occur before you are mentally prepared. So when that happens two, three, or even five times in a row, you must decide whether to succumb to a gut “reaction” or to adapt. You adapt by reasoning that if those hospitals were not going to accept her, it was good that they did not waste your time. You adapt by letting it reinvigorate your drive to do physical therapy and get stronger. You adapt by doing more research into transplant hospitals and developing an excel spreadsheet that Bill Gates would be jealous of. My wife’s medical issues were the greatest challenges of adaptability I have had to overcome and they provided some hard learned lessons.

In the end, you cannot blame your response on the bad news. The bad news is out of your control but your response falls squarely on your shoulders. The way to distinguish yourself in life and in business is not to cut yourself off from your emotions – own them. But more importantly…own your response.

Ray Poole is married to Rebecca, who was born with cystic fibrosis. He became involved with the Cystic Fibrosis Foundation and was named “Milwaukee’s Finest.” He later became a member of the Wisconsin CFF leadership board. He holds a bachelor’s degree in mechanical and materials engineering and a master’s in business administration. Ray has recently worked as an engineering manager and product manager in the electrical industry. Ray’s book, Lessons from a CF Cornerman, is now available on Amazon.com in paperback and Kindle formats. To learn more, visit www.CFCornerman.com.

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Striving for the Impossible: Caring for My Wife With CF

How much are you willing to do for a loved one? The answer is simple: anything and everything, right? We advocate for them, make sacrifices to be with them and worry about them constantly. Last year I did all of this, but — somehow — still felt pangs of guilt.

It feels righteous, almost macho, to hold myself to a standard of excellence — to try to move mountains for my wife. There’s something fulfilling about striving to do the best — the impossible — for our loved ones, but caregiving is often a marathon and not a sprint. So, if I set an impossible standard as the minimum expectation when caring for my wife, isn’t it only a matter of time before I fall short?

For me, guilt came from a feeling of failure and I certainly felt it last year.

My wife Rebecca lived most of last year in the hospital due to end stage cystic fibrosis and resulting respiratory failure. The doctors made it clear that each day was not promised while she was in a chemically induced coma.

Years earlier, Rebecca told me she wanted me to be by her side in her final moments. It seemed simple enough and I was determined to follow through on this request. Right after she was intubated, I worried that if I stepped out of the room for a minute, I might miss those moments … so I did not budge. On day one, I felt guilty that I needed to use the restroom; on day three, I felt guilty that I needed to check on our cats; on day 105, I felt guilty that I needed a full night of sleep.

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That year, I spent New Year’s Eve in a recliner, sweating into a plastic gown, while tears and snot made my mask particularly gross as I sat in the corner of ICU room #8. Even in retrospect, I know I would do the same thing again. However, using the bathroom or going home to scoop our cats’ poop should not fill me with guilt as if I were a husband who bailed at the first sign of trouble.

When Rebecca came out of the coma six weeks later, it only got harder. She would not sleep very well without me nearby and — somehow — I seemed to miss the important moments. I left for lunch one day and returned to find that she’d experienced a panic attack. In the spring, I sat on a hospital bench enjoying a few minutes in the sun while her ventilator tubes popped off and she began suffocating. I had left my job to be with her in the hospital, yet I wasn’t there for all of these events.

It was easy to forget the times I was there for her but hard not to feel that I was leaving too early, returning too late and taking too many breaks. I felt guilty from the moment I stepped out of her room until the second I returned.

As time passed, I learned that there’s no way to do everything for someone else all of the time and that I needed to recognize when and how I was needed the most. So, I tried to balance my needs with hers. I generally went home to sleep and I waited until Rebecca was asleep to get my lunch or go for a run. I would discuss her care plan with her team, so I would be there for her therapy and procedures. The toughest part of this was deciding that things I did for myself were not selfish, but necessary.

The only way I could “move mountains” would be to never take a break. And after six months, it was clear that I needed a few breaks. As helpful as it made me feel, Rebecca didn’t need me watching her sleep; she needed me to help her with therapy. I was better able to lift her spirits if I took some time for myself. I was more engaged in our conversations if I exercised. I asked the doctors better questions if I got a good night’s sleep. I felt better overall if I did not hold myself to an impossible standard. And though the guilt never seemed to go away completely, I did a better job for Rebecca when I wasn’t busy kicking myself in the butt.

We may be willing to move mountains but we don’t need to move all of them. If we can give ourselves a break, maybe we’ll have a little more to give to our loved ones.

Changing Perspectives: Lessons of a CF Caregiver

Time after time, cystic fibrosis has shown me that what I thought was important could change with changing circumstances.

Eighteen years ago, I met Rebecca, the woman I would eventually marry. She told me early on that she had cystic fibrosis and although I pretended to know what it was, she still provided me with an eight-page technical paper explaining the CFTR protein. Like many things with CF, what I thought I knew changed with circumstances or new information.

Over the years, I came to terms with what I thought Rebecca’s CF meant as we built our life together. An argument disrupted by a coughing fit was often a stark reminder of what was truly important and the precious nature of time. Along with all of the medical challenges, her illness brought me perspective about what was — what is — truly important.

Roughly 17 years later, it seemed we had faced it all…CF-related diabetes, “tune-ups,” supplemental oxygen, and infertility. I was an expert in all of this — until I wasn’t. A weekend stay in Colorado turned a cold into altitude sickness, an oxygen saturation level of 52 percent, and ultimately, heart failure. This was a serious setback, and I worried that long hours at work and biweekly travel could exacerbate her declining health. It became clear to me that it was time for Rebecca to leave her job or, at minimum, reduce her hours.

The thing about perspective is that it is different for everyone. As convinced as I was, it was unlikely that Rebecca’s boss would accept her resignation if it came from me and unfortunately, Rebecca had promised only to “consider” my impressively argued case.

Two months later, this decision was made for us as her progressive decline landed her in the intensive care unit (ICU). Yet again, I was prepared for anything — just nothing new. It was New Year’s Eve, 2014, when they intubated her and placed her on a ventilator. Her lungs had declined so quickly during that year that we had not even spoken about lung transplantation yet. It was shocking.

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In an instant, my perspective shifted again. Vacation days were no longer for enjoyment; they were a critical resource allowing me to stay by Rebecca’s bedside every day. In the beginning, I was worried that I would use them all up, knowing that I might require some for a future transplant, if she could qualify. These days quickly trumped salary and title as the most important benefits of my job.

As the month progressed, my perspective shifted again. Her care team told us that she probably had “days to weeks” to live. As I ate through vacation and then sick days, all I wanted was enough vacation time until she awoke from a chemically induced coma. Although my perspective had been that I could not lose my job because I still had to pay the bills, I began to think that an unpaid leave of absence would be a gift.

When Rebecca finally awoke in February, we had a whole new situation in front of us. Her body was atrophied. She was unable to walk, confused and unable to remember, on a ventilator and unable to qualify for a transplant. But … she was awake. All of the things I had wanted to tell her in January, I could tell her. Anything unfinished or unsaid could be resolved. I knew I would not be staying with my company for much longer, but suddenly, I did not care. My priorities shifted from holding onto my career as it was, to accepting that I could get another job. Perspective had shown that the most important thing was being there with her. I was either going to help her qualify for a transplant or enjoy our last days together as much as possible.

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I have found that prioritizing another person’s need over my own is usually not about making some dramatic sacrifice … but is often about making several smaller ones. I could not give up my lungs for Rebecca, but I could give up my job. There was no fantastic meal that would improve her week, but preparing a cooler with snacks and alternative meals could improve her day. It was not about running a half-marathon to support her … It was about finishing one and ignoring my wish to rest, so I could climb out of my seat to help her with physical therapy. By consistently remembering why I was there, I was forced to maintain perspective on these little things that actually make all of the difference. It may be impossible to be fully prepared, but a changing perspective can allow something that once sounded terrible to be acceptable. It can also take something that was expected, like another day together, and make it exceptional.

A Caregiver’s Learning Curve

While my wife Rebecca lay in her hospital bed, the sterile feel of the hospital room and the alarms from her ventilator had become all too familiar. The shock had worn off from New Year’s Eve, when they placed her in a chemically induced coma due to respiratory failure. I would sit by her bed and hold her hand for most of the day singing songs, texting her pictures, and chatting with her as if she were awake and aware of what I was saying. All the while there was a big question in my mind as to whether or not this provided value. With less than a year at my job in a new city, should I be at work to ensure that we could pay the mortgage and imminent medical bills? Was I caregiving‑ or just incapable of doing what was necessary?pillow-queen

At 8 a.m. every morning, the ICU staff would begin rounds. I could listen in, raise questions, and make comments. As a former engineering and marketing manager, I had an appreciation for problem solving and for their openness to include me in these discussions. My 17 year relationship with Rebecca allowed me to provide a better medical history. Because of the sheer amount of time I spent in the room I could provide more details about her condition the prior day or week (since they apparently allowed the staff to take days off). I came to recognize that even though I was not a medical expert, I could provide value and if that value improved my wife’s chances, I was going to remain there.

Fast forward a couple of months and Rebecca was in a long term acute care center across town. The tracheotomy (trach) they had done and the fact that she had beaten multiple pneumonias, allowed them to wake her up. Still on the ventilator and suffering from severe atrophy, she was able to move around in her bed and communicate. Though she didn’t have a voice (due to the trach) she could mouth words and write down her requests. She would walk with a physical therapist and a respiratory therapist about three times a week in an attempt to reach 500 ft. and qualify for a double lung transplant. Even with the help of the walker, she never made it much more than half that distance and we were turned down by five consecutive programs because they felt she was too sick and too weak to survive the transplant.

Meanwhile, I had assigned myself more to do. Every day, I would prepare high calorie yogurts with fresh fruit and coconut oil, bring her snacks, maintain a cooler with milk so she could have it on demand, and go to Wendy’s to get Frosties as needed. We would go through a variety of exercises to prepare for her walks, I would stretch her out, and I’d give her massages to keep her comfortable. I would shave her legs, cut her nails, brush her hair…I did everything I could to make her comfortable because regardless of the outcome, we were lucky to have another day together. I was not a nutritionist but I could help her gain weight. I was not a therapist but I could help her gain muscle. I was not her girlfriend but I could help her feel pretty. As I set up her tray with her phone, snacks, drinks, and some magazines positioned so that she could reach it all…I was learning what a family caregiver was.

Caregiving does not require you be an expert but you have to be willing to try. It sometimes means sorting through tons of data to determine the next transplant hospital to contact, getting tough with your loved one and demanding compliance, calling medical transports alongside the social worker, negotiating to get a staff member to bring her outside on a sunny day, and sleeping in the hospital when ICU delirium has her scared of her nurses. It also means accepting that even though we don’t have control of the things that happen, we’re doing something critically important for those we love.

When I started writing Lessons from a CF Cornerman: 38 Lessons I Learned During my Wife’s Illness and Lung Transplant, I thought it would be about Rebecca’s journey, but it turned out to be more about my own. After being on a ventilator for 171 days and in the hospital for 218, Rebecca came home. As everyone cheered for our happy ending, we began the next battle…recovery, emotional distress, and complications. I certainly felt blessed and overjoyed by the transplant, but I also felt responsibility, worry, and concern that few understand.

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In January 2015, Rebecca was given days to live by her doctors. Perhaps leaving my job to be by her side did not make the difference, but had I lost her I would have been glad I took that extra time. So when I sometimes find myself chatting with others in a waiting room outside an ICU, I try to instill hope because nobody knows what comes next, that’s not in our control…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. That’s why I wrote the book and that is the message I want to share with other family caregivers.

Lessons from a CF Cornerman is available on paperback and kindle at Amazon.com with more content available at www.cfcornerman.com.

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