Day 4: Salt, Salt Glorious Salt
A lack of salt can be dangerous
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.
Nasty, nasty things!
To avoid taking salt tablets, I now eat a lot of salt. Usually, my first symptom of low salt begins with a craving for salted potato chips or peanuts. When my salt is low, I crave Vegemite — and will suck on a spoonful of Vegemite.
Hyponatremia: when the concentration of sodium in your blood is abnormally low.Last year, for the first time in years, high Tacro (an immunosuppressant medication) blocked my craving for salt. My levels plummeted without warning and ended up dangerously low without the usual symptoms.
Severe hyponatremia occurs when levels drop below 125 mEq/L. Health issues arising from extremely low sodium levels may be fatal. — Medical News Today
My sodium level clocked in at 119mEq/L. Severe hyponatremia. For the next few days, I needed to take six salt tablets a day — and everything I ate contained salt.
Like most CF-related things, despite my sodium levels bordering on organ shut down, I looked healthy.
From the outside, no one could tell I was dangerously ill.
31 Days of Cystic Fibrosis Bonus Fact
All this extra salt on my skin makes me extremely attractive to the animal population. In summer, Mum’s horses would pin me to the rails and use my legs as a personal salt lick. My dogs have a blissful look on their faces when they lick my legs.
Day 3: Physio & Nebs
I had more questions than answers, and with all the curiosity of a five-year-old, I needed to know. As I lay upside down, propped up by cushions, my Gran’s hands thumped rhythmically on my chest as she did my physio, I asked the question.
Am I going to die from Cystic Fibrosis?
My Gran’s hands stopped, and there was an awkward pause before she answered, “Of course not.”
But my Gran’s pause spoke louder than the words, and I had my answer.
Physio is a necessary evil
Until my transplant in 2011, both physio and nebs were constant in my life. A twice-daily grind that often felt like punishment.
A neb first, then physio. As a child, physio was always percussion — where I would get tipped upside down, and a family member would clap their hands on my chest rapidly. After each bout of clapping, it was time for a vibe — a gentle shake of the chest as you breathe out. It’s a technique designed to help shake the mucus loose, making it easier to cough up the gunk filling my lungs.
I found percussion so effective that I continued it as an adult even when other choices became available. My next go-to choice was a flutter — a device that, when used correctly, creates a fluttering sensation throughout your lungs.
During active infections, an antibiotic neb would follow physio. A later advancement was Pulmozyme — yet another neb — this one designed to help thin out the lung gunk to making it easier to cough up.
Physio is the last thing you feel like doing with lungs filled with gunk when your ribs & headache from coughing all day, but it’s a necessary evil.
The day my Gran was accused of child abuse
My Gran was doing my physio. This time I was on her bed, partway upside down with Gran’s hands rhythmically thumping away at my chest. I whinged, and I whined.
“Stop hitting me. You’re hurting me.”
And the thumping and the sounds of my petulant voice carried out the open window and were heard by two passing salesmen.
They thumped on the door.
“What’s going on in there?” they demanded.
For the next five minutes, my Gran patiently explained the airway clearance technique and what she was doing. I even gave my own demonstration, clapping my hands on the side of my chest.
Reluctantly they left. But they stood at the top of our driveway for a long time as if they were trying to decide what to do next. Their belief that I was being abused still strong.
31 Days of Cystic Fibrosis Bonus Fact
My first book The Mystery of the Sixty-Five Roses is based around a child who sneaks and spies and gets the wrong idea after peeking through a window and witnessing a physio session.
Sandi Parsons - Cystic Fibrosis Warrior.