Diagnosed with the lungs of a 126-year-old man from years of smoking and a rare genetic lung disorder, Ryan Taylor moved home from Alberta this past Christmas to die.
But a news report his father saw on Memorial’s School of Pharmacy’s Smoking Cessation Program became Mr. Taylor’s springboard for newfound hope, at home in Newfoundland and Labrador.
“I’ll never forget the look on the doctor’s face after that last lung test,” said the Chamberlains, N.L., native, his shoulders slumped. “He thought the machine was broken. He tried the test a second time and then he just sat back in his chair and he said, ‘Kid, you’ll never work another day in your life.’ I had just turned 30.”
Wanting to work, eager to contribute, he felt like a waste of space. A burden to those around him.
A rare and dismal diagnosis
Mr. Taylor was diagnosed with severe chronic obstructive pulmonary disorder (COPD) and was forced to go on disability insurance. It took a year-and-a-half to receive payment.
He lost his home and his truck. He had a breakdown. Luckily, a friend let Mr. Taylor stay on his couch, but it took a toll on the friendship.
Despite ongoing medical followup and testing, his symptoms worsened and his health continued to deteriorate.
“I was in and out of the hospital, trying different puffers and medications,” he said. “I could barely breathe, I was spacing out. COPD is supposed to level out, but it kept getting worse. They couldn’t figure out what was wrong with me.”
Mr. Taylor was diagnosed with alpha-1 antitrypsin deficiency – a rare genetic disorder that results in reduced production of alpha-1 antitrypsin, a protein that helps protect the lungs.
“I couldn’t even bring groceries into the house. That’s hard for a 32-year-old man.”
Individuals with the disorder are at increased risk for developing COPD/emphysema, and tend to develop it earlier in life.
“I was given a lung specialist in Calgary and I continued to work with the doctors on finding the right combination of puffers. It was all very draining. I was in a bad relationship, I couldn’t pay for much, I couldn’t work, I couldn’t even bring groceries into the house. That’s hard for a 32-year-old man.”
The power of nicotine addiction
Dr. Leslie Phillips is the director of the Smoking Cessation Program (part of the Medication Therapy Services [MTS] Clinic) and associate dean of undergraduate studies in the School of Pharmacy.
She says cases like Mr. Taylor’s speak to the strong hold nicotine addiction has over common sense.
“Nicotine is the most addictive substance affecting society today,” said Dr. Phillips. “It’s not realistic for us to advise smokers they need to quit for medical reasons and expect them to just go do it. They already know smoking is bad for you and all the reasons why they should quit. And two-thirds of them want to quit.”
Many smokers make a few attempts to quit on their own each year. The majority of them are not successful.
“Smoking is an addiction, not a habit.”
The MTS clinic practises a research-based approach to smoking cessation. Pharmacists work with patients to develop personalized quit plans. Considerations include a person’s quit and medical history, their current medications, lifestyle and their ability to pay for various medications.
“Smoking is an addiction, not a habit,” said Dr. Phillips. “Advising someone to quit gets the conversation going, but it’s usually not enough. We know that offering more assistance increases the likelihood of a quit attempt by 40-60 per cent and doubles or triples the likelihood of that attempt being successful.”
Mr. Taylor couldn’t bear the thought of saying goodbye to the one thing in his life that provided comfort: smoking.
“My doctor had told me six months before the alpha-1 diagnosis that if I didn’t quit, I would die of respiratory failure,” he said. “She even wrote it on a piece of paper right in front of me and printed it and put it in my file.”
Despite the comfort he craved so desperately, he tried to kick his nicotine addiction.
He took quit medication that helped, but around six months into treatment he developed a rare side effect: intensely painful blistering on the roof of his mouth. He couldn’t swallow, let alone eat or drink. His doctor took him off the prescription.
Discouraged and beaten, he began smoking again. Finally, he worked up the courage to call his mother to tell her he was moving home to die.
“How do you tell your mom that she’s going to have to bury you?” he said, pausing to wipe away tears.
“I didn’t want to come home. I didn’t want my son to see me dying.”
Newfound hope, longing for the list
Since becoming a patient at the Smoking Cessation Program in January 2017, and with the help of Dr. Phillips, Mr. Taylor has altered his course.
He has found the right combination of quit medications to ease his pain of withdrawal and cravings. Counselling has proved to be an effective tool for recognizing and managing his triggers.
“My life was over, and since I’ve come home and started coming to this smoking clinic, my life has changed.”
“Dr. Leslie”, as Mr. Taylor affectionately calls her, “has just helped me so much.”
“Since I’ve come home and started coming to this smoking clinic, my life has changed.”
He now spends his days watching the water at Topsail Beach or Cape Spear, walking his 11-year-old son, Gavin, to the bus stop, and attending his medical appointments.
“He makes sure I do my daily walk down to the stop sign and we touch the sign together,” he said, bursting with pride.
Mr. Taylor knows there are rough seas ahead, with continued treatments, medical appointments and no doubt, temptations. But his perseverance and tenacity has helped him weather many storms in his life already.
His hope is to eventually make it onto a lung transplant list and to, finally, breathe easy.
