Growing up, Larry Worfolk always felt he had an expiration date hanging over his head. Born in 1958 with cystic fibrosis (CF), Larry understood most children didn’t make it to adolescence before they succumbed to the disease, “I grew up believing that I was living the last five years of my life.” When Larry was in his early teens, he had a doctor tell him he would never see the age of 20.
Cystic fibrosis is a fatal genetic disease that affects the salt/chlorine channels between cells. This can have various effects on the body, but the digestive system and lungs are primarily affected. For Larry, CF translated to a buildup of sticky mucus in his lungs. This led to frequent hospitalizations and constant lung infections. He essentially missed all of second and third grade with bouts of pneumonia.
Not only did Larry defy the odds and survive adolescence, but his health improved. He took a job at a sheet metal plant where the work was grueling and physical. He met and married his wife and had two children. For the next two decades, life was pretty normal for Larry and his family, with only a few health issues along the way.
The fight for survival
Unfortunately, this period of stability would not last. By the time Larry was in in his 40s, recurrent lung infections were becoming more challenging to treat, requiring frequent hospitalizations for IV medication. Larry recalls an incident that made the gravity of the situation clear, “We had a little cabin out in the bush. It was at a mile-high elevation, which I could feel in in my lungs. Shortly after our arrival, one day my wife looked at me aghast. When I asked why, she told me to look at my fingers. They had turned blue past the first knuckles – my lungs weren’t pulling enough oxygen out of the air and into my bloodstream.”
Larry also had a severe episode of haemoptysis, which is bleeding from the lungs. Although he had experienced minor incidents before, this event was terrifying as blood was literally shooting from his mouth. Following this, he underwent an arterial embolization to treat the weakened areas of his lungs and prevent future bleeds. This was only a temporary solution – Larry was told it was time to consider a double lung transplant. The doctors cautioned him that transplant was not a cure, but for Larry there was no question, “A transplant was a no brainer. I was going to die from CF. I wanted to live! I wanted a chance at life and a lung transplant gave me that chance.” Before he could be placed on the waitlist, he had to undergo a rigorous assessment. The transplant team had concerns over Larry’s age. At 50 years old, he would be the oldest patient with CF to undergo a transplant in the province.
Thankfully, Larry passed all the required tests and began the wait. This is when the real battle began. The wait for a transplant can be described as a type of limbo teetering between life and death, possibility and reality. Time takes on a whole new meaning. The one-year mark came and went. Larry and his family remained hopeful, but it was obvious time was running out, “I couldn’t get off the couch and walk across the room without panting for breath. The effort of having a shower would leave me collapsed across the bed for half an hour while I recovered. My family was watching me die.” Twenty-two months and one false alarm later, Larry received the call that he was getting his transplant.
The joys of breathing
It has been eleven years since that fateful day when Larry received his second chance at life. In that time, he has made the most of his new lease on life – participating in the Vancouver Sun Run, racing dragon boats and holding his newly born grandson. Never far from Larry’s mind is his donor and their family, “It is very humbling to think that a stranger saved my life, and to this day it is difficult to reconcile the mourning that my donor’s family went through at the same time that my family was rejoicing.”
Life post-transplant is not without its challenges for Larry – stomach issues and tremors from the anti-rejection medications, and skin cancers to monitor and treat. He hopes that research will find newer and less potent medications and believes engaging patients in the research process will lead to advances that are more relevant and meaningful to patients.
Larry would not trade his new life for anything, “I can BREATHE! Despite all the challenges, it’s pretty hard to trump that!” The joy he feels for life can only be overshadowed by his desire for everyone on the waitlist to receive their second chance. Larry is pleased ICBC has taken an active role in raising awareness about organ donor registration by asking people when they renew their driver’s license. He says it not only sparks the important conversation, but it encourages people to talk to their families. After all, saving a life starts with a conversation.