To me Cystic fibrosis is a chronic condition that requires a lot of attention and maintenance. But before I dive in too deep with an overwhelming array of scientific doctor talk, I would like to share my personal reality that will make the information more understandable to you if your reading out of complete curiosity.
The routine of maintaining such a condition relates closely to those of you who are religious gym fanatics. Think about it this way, you’ve been going to the gym everyday for the last 12 weeks and it becomes part of your daily routine. You then decide to go on a months holiday in Paris, where let’s face it you couldn’t say no to every patisserie shop that you passed and you’ve over indulged in cheese and wine. You then come back home and begin your daily routine of working out, and you mentally curl up in to a little ball as you realise you can no longer perform the same way as you once did a month ago. You’ve had some time off and you’ve now found out how ‘hard’ it is to come back to training and being as healthy as you once were. Well, the same goes with medication and medical physiotherapy for any CF sufferer.
*WARNING! OVERWHELMING ARRAY OF SCIENTIFIC DOCTOR TALK AHEAD*
Please take in to account that my ideals and explanations are subjective to my own experiences and understandings, however through thorough research for my own personal benefit I have learnt that the most accurate and understandable explanation of Cystic Fibrosis comes from The Better Health Channel Victoria. They describe CF as:
Cystic fibrosis (CF) is a life-threatening genetic disorder. It severely affects the lungs and digestive system. There is currently no cure. However, with improved medication and treatment to manage symptoms, life expectancy has been extended considerably.
Cystic fibrosis (CF) is the most common life-threatening genetic disorder among Caucasians. It primarily affects the respiratory system (lungs), the digestive system (pancreas and sometimes liver) and the reproductive system.
When a person has CF, their mucus glands secrete very thick sticky mucus. In the lungs, the mucus clogs the tiny air passages and traps bacteria. Repeated infections and blockages can cause irreversible lung damage and a shortened life.
The pancreas is also affected, preventing the release of enzymes needed to digest food. This means that people with CF can have problems with nutrition and must consume a diet high in kilo-joules, fats, sugar and salts.
People with CF have difficulty clearing mucous from their lungs and have recurrent respiratory infections, which can result in lung damage over time. The thick mucous also stops digestive enzymes in the pancreas from reaching the small intestine, which leads to difficulty with digesting fats and absorbing some nutrients. Some people with CF also experience liver disease.
Find more info through the link below:
Okay, so that wasn’t as completely overwhelming as what you may have thought it would be, so kudos to the Better Health Channel with this description of CF. The way this is written describes direct and factual information about the condition. But as someone who lives daily with CF, I can offer the information health professionals can’t, an internal sense of how it physically feels to live with Cystic fibrosis.
*WARNING! OVERWHELMING (but not really) ARRAY OF RORY MORGAN TALK AHEAD*
I got abs and the ‘V’, not from sit-ups, well maybe a few sit-ups, but from coughing and hacking up phlegm for 24 years. Not like those abs you see in magazines or on models but just a good foundation you can appreciate. I have next to no body fat at the standing weight of 80kg, my last bio scan in summer showed 12.5% body fat. In accordance to builtlean.com (American) and fitnessart.com.au (Australian) that is like athlete level (8-13% Body fat). I can hold my breath under water for the length of an Olympic swimming pool, I run the 10km gold coast marathon in under 50 minutes every year. (Okay, enough boasting Rory!) Don’t read this as a cocky arrogance because what follows explains the feats and accomplishments above.
Now this is not something I like to think about, but a terminal disease makes you an underdog from day one and man I love an underdog story (dont we all). Though, in reality me being an underdog is not something I tend to believe in, I favour towards the idea that the rich get richer (in my case I’m healthy, so all I need to do is maintain this to get healthier). My parents built me a phenomenal bill of health and it is my responsibility to maintain that abundance of health wealth and continue to grow it.
Obviously every person has their dark days (the struggle is real), and people tend to find strength from this. For me, I find my strength from stepping up and having the mindset of success. So, without further adieu let’s discuss the physical setbacks (the dark days) of this disease.
My definition of CF is that it is primarily a terminal lung condition that disallows the body to stop mucus from developing. So with the technology of medication and physical therapy such as prescribed therapy and physical exertion, it is a constant battle to secrete the mucus through coughing up which suppresses bacteria and lowers infection chances. People sometimes ask me if it’s like breathing through a straw, but it’s hard to justify that when you’re born with CF and assume breathing is normal considering it is a passive trait. So I describe it as tightness on the lungs as if there was a rubber band on your airways, however not constant, tightness varies with humidity and seasons. When unwell I develop like a crackling sound when exhaling hard and for long durations. Sounds like popcorn popping but it’s just the air escaping the mucus bubbles and popping in my airways. Infection also gives me a bad breath, which is a common indication for me to start working harder on therapy.
The biggest set back of CF is coughing, which has many forms and levels. A change of seasons usually encourages a dry cough, where there is no phlegm but a tickle in my throat that can last all night with no sleep and my voice sounding like a seal by morning. Also assisted by asthma is the dry cough but within a few days a build up of infection, suppressing the immune system following is a ‘wet cough’. This is when the crackling and phlegm is produced, coughing is less consistent but more spasmodic because for me once the phlegm is shaken I must get it out, a coughing fit usually sounds like a smokers cough and the reason I know this is because some of the guys at work will ask me for a light 5 minutes later or tell me I need to ‘give it up’ (the smoking). This will last usually until I defeat the infection whether it is a couple of days through hard physical exertion or prescribed antibiotics. Considering I haven’t been admitted to hospital because I refuse to, that’s as bad as my lungs will get on a quarterly basis I’d say. But I know for some of my friends who are sufferers that a quick 2-week trip to hospital on antibiotics and isolation from further common cold and other infections helps them back to the norms of life.
Cystic fibrosis also affects the digestive system dramatically and for me this is the frustrating part besides coughing. Taking medication every time before you eat something with carbohydrates in it. Like every time, because if you don’t I’m preparing for one heck of a stomachache and a short date with the toilet because nobody wants a stinky friend. When talking about these tablets I’m talking like 3 enzymes, 1 anti inflammatory, 4 inhaled capsules and a 10-minute nebulizer for breakfast. That’s at 4am before I get to work at 5am(well try). From then on its approx. 2 enzymes with every snack and approx. 3 with main meals, Therefore I’m racking up like 15 plus enzymes a day, without the added extras for breakfast and salt tablets to replenish my sweat at the end of the day. It’s not hard to remember, just a pain in the arse when I forget.
On a serious note its not just stomachaches and physical pain, without enzymes I cannot gain weight because the pancreas is dependent on these pills to secrete the nutrients from the food I eat.
Another set back can be gaining weight. It is a critical factor for people with CF as it creates a safety net for when infection sets in, for example, I can weigh 80kg now as stated earlier, but 2 weeks of infection can have me down to approximately 73kg. Now a lot of people will read this and go “hell yeah” this guy is saying he can lose 6kg in 2 weeks, I want me some of this cystic fibrosis. I know this because people did ask to swap with me in high school, mainly women, well girls because of lack of maturity back then. However I failed to explain the terms and conditions to them because I’d shake hands on the deal without the disclaimer. The fact that at the end of 2 weeks of not eating properly leaves you feeling lethargic and incompetent to go about life’s tasks without mass amount of energy foods. The further risk of a catastrophic development of infection resulting admittance to hospital and the possible long path to organ transplants and mass drug intakes to get you back on your feet.
So if your thinking “well what a piece of shit disease that is, poor guy” DON’T! Regardless of the physical set backs that my condition attaches to my daily life, I would not change it for the world, because it encourages me to live a fulfilled, happy and healthy life.