Planning Ahead the Key to Living With Cystic Fibrosis

Planning Ahead the Key to Living With Cystic Fibrosis

Cystic Fibrosis is a recessive genetic disorder that affects organs like the lungs, pancreas, and liver – gradually deteriorating the body over time – and those living with the condition must take constant care of their bodies through medications, treatments, nutrition, and frequent hospital visits.  

One of our more recent clients, Scott, now 32, was only an infant when a sweat test conducted by his doctor detected a higher level of salt in his sweat – an early indicator of Cystic Fibrosis. Growing up, Scott was one of the more fortunate cases. His ability to cope with his condition seldom prevented him from enjoying his life, and he eventually managed to follow his dream to become an IT Specialist with a local tech company. Lately, however, his body has been giving him more difficulty and Scott hasn’t been able to work. 

Of course, some days are easier than others. Cystic Fibrosis is a genetic disorder that tends to worsen as people age, and Scott has needed constant vigilance to prevent his body from deteriorating. Every step of his daily routine is designed to mitigate his symptoms – from his diet to the chest clapper that he uses to drain the excess mucus from his lungs. Scott was kind enough to give us a glimpse into his daily life as a young man with Cystic Fibrosis whose cheerful demeanor refuses to let the disease bring him down. 

7:00 a.m.

When I first wake up in the morning, I use my chest clapper which clears the mucus from my chest to avoid build-ups. I always make sure to drink lots of water before breakfast to avoid dehydration. My body has difficulty absorbing nutrients so breakfast is always loaded with fruits, vegetables, and healthy fats – and I never forget to fill out my food log to make sure I stay on track with the right nutrition. Planning is so important for me in this regard.

8:00 a.m.

I’m very fortunate that I live just down the street from my community pool, so before COVID-19, this was my go-to spot for morning exercise. Until the pool opens back up, I’m just going for walks around the neighborhood. Getting regular exercise helps me clear more of the mucus out of my lungs, and low impact exercises like swimming are great because they take less of a toll on my body.      

11:30 a.m.

By this point in the day, I’ve probably gone to the bathroom a thousand times – as my frequent intake of water necessitates as much. I always carry my chest clapper with me in case I’m having a bad day and need to use it again. It’s around now that I also like to take my probiotics for the day. I’ll usually eat lunch at home- only rarely going out with neighbours and not before confirming that our destination has washroom facilities just in case. I never go anywhere without confirming the availability of washrooms beforehand. 

7:00 p.m.

Depending on how my body is feeling, I’ll either be in a great mood or much more tired by this point. I’ll use the Chest Clapper again if I need to, then I’ll spend some downtime on the computer. I’m very active on a site called cysticlife.org and enjoy connecting with other people with CF to help maintain a positive perspective. Sometimes feelings of depression and envy can kind of sneak up on you, but with these support groups, it keeps what matters most in clear focus. It’s great to talk to people who understand exactly what I’m going through, and I’ve made a lot of amazing friends there. 

For those living with CF, daily realities are a little different than for others who don’t have to manage the symptoms. Scott has worked with a therapist to help maintain his sunny outlook over the years and is grateful for the support structure he’s managed to cultivate through his online and offline groups. Though he is aware that he may need an organ transplant in the future, until then, Scott is trying to live life to the fullest. By embracing all the tools at his disposal, he’s given himself the best opportunity to succeed!

Has your long-term disability claim been denied? Contact Share Lawyers and put our experience to work for you. We have recently settled cases against Great-West Life, Desjardins, Manulife, RBC Insurance, Sun Life, and many more. We offer free consultations and there are no fees unless we win your case. Find out if you have a disability case.