Monday, September 26, 2016

Local Man Writes Book About Wife's CF Fight, Helps Others in Similar Situations


Raymond and Rebecca Poole. Provided.

Two years ago, December 31, 2014, Fort Thomas couple Raymond and Rebecca Poole were not cheering in the New Year with party hats and champagne. Instead, Rebecca was going through respiratory failure from cystic fibrosis (CF), and she was placed on a ventilator in a chemically induced coma. For the next six months she remained on life support, in hopes of qualifying for a lung transplant.

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Rebecca and Ray were new to Fort Thomas, having relocated from Wisconsin only a few months prior. Ray says while they also knew she would eventually need a transplant one day, they were both surprised by her rapid decline at the end of 2014.

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"Even before I got over the shock of seeing her in that condition, my concerns spanned the full spectrum," Ray says. "I wondered if I would have enough vacation from my new job to spend my days at the hospital. With no family living nearby, I needed to keep everyone informed yet calm and be ready to receive them if they chose to visit. Beyond the medical worries, our house was not yet unpacked, I still had to register our cars in KY, her insurance company wouldn't talk to me and I had no idea where she put the checkbook. It was overwhelming, to say the least."


Ray says cystic fibrosis is a genetic condition caused by the body's inability to produce a certain protein called CFTR. "This protein is responsible for transporting sodium chloride across cell membranes," he says. "As a result, the mucus that the body produces is thicker in someone with CF and causes damage to several organs. The pancreas often does not release digestive enzymes, requiring pills with every meal or snack. CF-related diabetes, which Rebecca developed at 16, is also common. The sinuses often develop polyps and infection, which can require painful sinus surgeries." 

With CF, Ray says the mucus in the lungs is also thicker and more difficult to cough out resulting in an ever-present cough and frequent lung infections. "This degrades the lungs over time and can ultimately result in respiratory failure," he says. "At 37, Rebecca was about three years short of the life expectancy for someone with the disease. It was when they first referred to her condition as 'end stage cystic fibrosis' that it really hit home."

Prior to moving to Fort Thomas, Rebecca and Ray had researched CF care in two cities where Ray also was entertaining job offers. Ray says it was the University of Cincinnati Medical Center's Cystic Fibrosis Clinic that ultimately drove their decision to move to Fort Thomas. "It was their expertise in understanding the disease that helped keep her alive long enough to be considered for a double lung transplant," Ray says.

While in the chemically induced coma, doctors told Ray that his wife probably only had a few days left to live, and that she might not ever wake up. "I was also told that she would not likely get off the ventilator with her natural lungs and that she was too sick and weak to qualify for a transplant," Ray says.

Although the situation seemed dire, Ray says a lesson emerged: Be thankful and appreciate the time they've had. "When fear and dread started to kick in, as they invariably did, I reminded myself of another lesson," Ray says. "Not mourning someone who is still alive. There would be plenty of time for that if the worst happened and I needed to focus on being there, asking good questions, and advocating for her."


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When Rebecca finally woke up in February 2015, her muscles had atrophied to the point that she wasn't strong enough to lift her hand to her face to scratch an itch. Through hard work she eventually began walking again, giving hope to finding a transplant hospital that would accept her. Because the University of Cincinnati Medical Center doesn't do lung transplants, Rebecca had to apply to various hospitals around the country. Five times she applied, and five times she was rejected. "It was becoming really discouraging until the University of Pittsburgh Medical Center (UPMC) agreed to evaluate her," Ray says.

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On May 12, 2015, Rebecca was flown on a medical flight from Cincinnati to Pittsburgh. And on June 18, 2015, she received a lifesaving double lung transplant.

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Rebecca spent months recovering both in her hospital and in an apartment the couple rented in Pittsburg. "We got the green light to return home to Fort Thomas just before Thanksgiving," Ray says. "Kind of appropriate. I learned something every step of the way."

After seeing so many other families struggling through similar challenging medical situations in ICU waiting rooms, Ray decided that he wanted to share the lessons he learned with others.

In October Ray's self-published book, Lessons from a CF Cornerman: 38 Lessons I Learned During my Wife's Illness and Lung Transplant, will be released.

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"I wanted to share what I learned and how I helped her while staying motivated through the toughest time of our lives," Ray says. "So many families go through this sort of thing and I hope that the lessons that helped me can help others."

To learn more about Rebecca and Ray's story, and order a copy of the book, go here. You can also find more information on Facebook and on Twitter.

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