May 1st – May 5th
31 Days of Cystic Fibrosis. May 1
After months of being told she was ‘just a nervous new mum’, my mum finally received confirmation that something was indeed wrong with her child.
A diagnosis that came with initial relief and hope for answers rapidly turned to being told her daughter only had a 50% chance of making it to 13.
31 Days of Cystic Fibrosis. May 2
I take 112 Creon 10,000U per week – that’s if I don’t eat any snacks. Every snack requires an extra Creon or two. (And not many days go by that I don’t eat snacks!!)
I’ve taken enzymes all my life, and without them, I can’t digest food. I can still remember the transition from the enzymes I took as a small child, a powder that needed to be sprinkled on my food, to tablet form. Each enzyme was in its own foil wrapped packaging. It took longer to open them than it did to swallow them!
As a teenager, I used Cotazyme, which was in a capsule form and contains hundreds of beads, like Creon is today. I took 20 with a standard meal and 25 if I was eating fast food.
Now with the advancements in medical technology, I only need 4 Creon for each meal. If you’re a math-based person and do the calculations, you’ll realise that 4 Creon taken with three meals a day, for seven days falls short of the 112 total. The extra tablets are because I take Creon with my immunosuppressant medications to aid their absorption.
Bonus Fact: I can take up to 27 tablets with 1 sip of water. It’s a CF Camp record that I’m rather proud of and can still achieve 33 years later.
31 Days of Cystic Fibrosis. May 3
Until my transplant in 2011, physio was a constant in my life. A twice-daily grind that often felt like punishment. When your lungs are filled with gunk, and your ribs & head ache from coughing all day, it’s the last thing you feel like doing, but physio is a necessary evil.
As a child, percussion was the method of choice, and as an adult, I used a mix of the percussion technique along with a handheld device called a Flutter.
The day my Gran was accused of child abuse has made two appearances in my writing to date. It was fictionalised in my picture book, ‘The Mystery of the Sixty-Five Roses’ (published by Cystic Fibrosis WA and it also starts off my essay ‘Breathing Life into a Dream’ which was published in the Serenity Press anthology ‘Writing the Dream’.
Bonus fact: Always one to be polite, I would always thank Flame (my CFWA Homecare Worker) or the hospital Physios with “Thanks for beating me,” after a percussion session. Which was all fun and games until Jarryn told his teacher that he had to go straight home that afternoon because Flame was coming around to beat his Mum.
31 Days of Cystic Fibrosis. May 4
Cystic Fibrosis WA Part 1 Camps.
CF Camps run by CFWA were a highlight of my childhood. It was a place where I was no longer different. I wasn’t the only child taking handfuls of tablets, nor was I the child who had to go home early to have physio, or the only skinny child with a pot belly (the enzymes weren’t always the best back then!)
These things that marked us a different, at camp we all did together.
I forged lifelong friendships at these camps, friendships that spilt out of camp, out of the hospital and into our regular lives.
Apart from the friendships, the socialisation I had with other people with CF gave me something else immensely valuable. I saw all the stages of CF progression, and although my CF stagnated without progression for many many years, I was never under any delusion that it would stay that way. I knew that at some point I too would progress. CF didn’t throw me any surprises (except for how quickly I declined during end-stage respiratory failure) because I had watched my friends go through everything before me.
I knew about PICC lines, and ports well before I needed them. I knew about all about hemoptysis before I had to deal with it and I was very aware of the possibility of a pneumothorax (although fortunately I never had one). I held my friend’s hands as they were dying and I’ve been to more funerals than I care to remember. But rather than feeling anxious or scared, this knowledge was powerful, it educated me on the steps I need to take with my health and the things I would need to fight for. It made me a stronger person.
Bonus Fact: Mitch – I know I gave you terrible trouble during FLOB (Flat on Back – which was occasionally enforced between 1pm and 2pm so the adults could have some rest time to compensate for us staying up talking most of the night) time. However, now, nothing beats a good FLOB in the middle of the day
Horrible Fact: Due to cross-infection guidelines, people with CF are not encouraged to meet in person, there are no more camps or social activities. Some people with CF have never met another person who also has CF.
Picture from The West Australian, 28th April 1980. Front to Back: Julie, Melinda, Sandi and Shannon.
Salt, salt, glorious salt.
People with CF have 5 x more salt in their sweat than people who don’t have CF. (Not to be confused with sweating 5 x more!!) Essentially, the salt travels to the skin surface with the sweat but is not reabsorbed.
In summer you can see, and brush off, the salt crystals on my skin.
When salt stores are low, symptoms can include fatigue, fever, muscle cramps, stomach pain, vomiting, dehydration and heatstroke. As a child, I had several admissions to hospital due to low salt and dehydration. Then the fun started. Salt tablets.
Nasty, nasty things!
To be clear, I’ve taken various and numerous medications over the years, and there is NOTHING worse than salt tablets.
Most days I have vegemite for breakfast, and in my early twenties, after a little experimentation, I was able to stop taking salt tablets. Now, my first warning that my salt is getting low starts before all the symptoms mentioned above, instead, I start to crave salted potato chips and salted nuts. By crave, I mean think about them constantly. And if my salt starts getting extra low, I start thinking about vegemite on cheese.
It’s a snack I’ve named for obvious reasons, “Would you like some cheese with your vegemite?”
Bonus Fact: All this extra salt makes me extremely attractive to the animal population. The horses used to pin me to the rails and use my legs as a personal salt lick. Pepsi, who enjoys licking without any incentive, has the same blissful look on her face when I’m salty as she does when she has to clean up spilt food.