Salt Is the Cystic Fibrosis Version of Fairy Dust

Day 4: Salt, Salt Glorious Salt

Image by ac_bnphotos from Canva

Salty Squad

People with CF have 5 x more salt in their sweat than people who don’t have CF. Before discovering the CF gene, a sweat test chloride level of more than 60 millimoles per liter was a diagnostic indicator of CF.
In summer, you can see, and brush off, the salt crystals on my skin. You can often see salt ‘dust’ on my clothes if I wear black.

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.
Salt tablets.
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. In 2020, for the first time in years, high Tacro levels (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 shutdown, 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.

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Next in the 31 Days of Cystic Fibrosis series — Forget Five Feet Apart. People With Cystic Fibrosis are Family. 

Our shared experiences connected us, making an unlikely bunch of children with differing likes and dislikes firm friends.

31 Days of Cystic Fibrosis is an awareness-raising campaign to coincide with
the national Cystic Fibrosis (CF) awareness month in Australia.
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​If you’ve just joined the journey and want to start at the beginning, you’ll find the first post here: Your Daughter Has Cystic Fibrosis

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