A Day In The Life: Cystic Fibrosis
There are approximately 70,000 people living with Cystic Fibrosis (CF) worldwide, an autosomal recessive genetic disorder that affects the lungs, pancreas, liver, intestine, and reproduction organs. Individuals living with CF have to take constant care and attention to their bodies through medications, treatments, nutrition, and often experience frequent hospital visits. With recent advancements in the care and treatment with people with CF life expectancy has risen from just 10 years of age to 37, although many people live to be much longer.
Diagnosed With Cystic Fibrosis As An Infant
Like most people with CF, Jonathan was diagnosed when he was an infant, when his doctor conducted a sweat test, which detects higher levels of salt in a person’s sweat which is a typical test to determine when some has CF. Growing up with CF wasn’t always easy. Jonathan was often in and out of the hospital with recurrent lung infections and intermittently needed a feeding tube to combat the malnutrition and dehydration which were complications from an inability to properly absorb nutrients.
His difficulty breathing with constant sinus infections made it hard to play with other kids, and his parents did the best they could to make sure he was able to go to school as often as he could. Puberty isn’t easy for anyone, but because of the digestive issues and complications of CF, it was hard to put on weight, so Jonathan was always smaller than the other boys, and therefore, he often felt socially isolated by his condition. Dating was always a challenge as well.
Active In CF Support Groups
Jonathan’s parents made sure the he had resources like counselling where he could talk through his issues. They were very active at CF support groups and events. Jonathan was able to get a computer programming degree and was able to work from home and manage his condition. When Jonathan was 25 he met Matthew, a shy and very kind man who was always very patient when it came to Jonathan’s condition and the two were married when Jonathan was 27 years old. They were even able to plan a trip to Rome for their honeymoon, something Jonathan couldn’t have fathomed doing alone, but the two worked together to ensure he had all the supports he needed like antibiotics on hand if he developed an infection and a detailed map of where washrooms were around the city in case he had problems with his digestion.
Jonathan's Routine Set Around Cystic Fibrosis
Now 30, Jonathan has a routine set around his CF. When he first gets up in the morning, he uses a chest clapper, a mechanical device that claps and cups his sides to clear mucus from his chest to avoid build ups. Jonathan always makes sure to drink lots of water to avoid dehydration. Because of his CF Jonathan keeps a food log to make sure he has the right nutrition. His husband likes to make breakfast for each of them before he goes to work. Jonathan needs a higher fat intake, probiotics, and lots of fruits and vegetables.
He Uses Clapping Device Daily
Jonathan works from home, and uses his clapping device three or four times a day. Because of all the water he drinks, he has to use the washroom quite frequently, and working from home makes it a lot easier. Jonathan also goes swimming three times a week at the local community centre. Physical exercise can sometimes be hard for him, but it really helps clear out his lungs and stay healthy, and the low impact swimming really helps.
He Enjoys Connecting With People Who Have CF
Jonathan’s also really loved photography and usually after dinner he and his husband go for a walk in a ravine near there home. When he was a kid in hospitals he was always looking out the window and watching the world go by, and taking photos is a kind of way to express how he sees the world. Jonathan’s also very active on a site called cysticlife.org. He enjoys connecting with other people with CF and instead of always feeling like a “patient” it’s a great way to talk to people who understand exactly what he’s going through, and he’s been able to connect with other people with CF in his community and often meets with friends.
Daily Realities Are Different From Others
For those living with CF, daily realities are a little different for others who don’t have to manage the symptoms. Jonathan knows he’ll most likely have to get a lung transplant or a bowel resection when he gets older, as CF tends to worsen as people age. He’s able to connect with others about what this process is like, and is planning with his husband about what their life will be when this may happen -- as well as plan their next visit to New Orleans!
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