PWCF* use some everyday objects in unexpected ways. I have whittled down a very long list of examples to my top 10 picks.
1. Makeup remover pads
Somewhat surprisingly, makeup remover pads are not just for removing makeup. Three or more stacked together make a great filter for our nebulisers. When we nebulise antibiotics we need to try to prevent the mist from being breathed in by our dogs or landing on surfaces and creating extra, super-duper resistant bacteria. If we bought the actual filters designed for such a purpose we would swiftly go broke. Makeup removal pads are a much more affordable option and they have the tick of approval from RPA’s senior physiotherapist.
2. Baby bottle steriliser
Although we don’t have any kiddies I would really like to have a baby bottle steriliser. Why I hear you ask? So we can pop our nebulisers in for sterilisation and forget about them. At the moment we boil them on the stove. When we inevitably get sidetracked with real life we end up with $1000 of melted plastic, a destroyed saucepan, toxic fumes and a near death experience.
3. A timer
A belated addition to this list. We now use a timer to alert us when our nebulisers have boiled for long enough to prevent future meltdowns.
4. Plastic cups
We buy enough plastic cups to water an army. They are great for collecting superfluous phlegm during airway clearance. Admittedly, it’s a pretty gross concept but we honestly can’t think of a better way to dispose of the biologically hazardous material. On the plus side, keeping the gunk in a cup also gives us an idea of how much we’re clearing to help us gauge how our lungs are faring.
We cook with it and we sprinkle it on our food – no surprises there! We also swallow salt tablets, inhale salty mist to hydrate our airways, squirt salty water in our sinuses to stave off pesky nasal polyps, inject saline into our ports to flush them and dilute our nebulised antibiotics in saline. (To understand more about the salt crisis which underpins CF symptoms see my previous post: Salt.)
When you have CFRD* and your blood sugar levels are nosediving south into hypo territory what do you need? Sugar! STAT! Just this morning Dave failed to bring enough snacks or cash with him on an outing and had to beg for a free glass of apple juice from a cafe to avoid falling into a coma. Dave went back later and gave the owner a big tip to say thank you for coming to the rescue. (To understand more about CFRD see my previous post: Sugar.)
5. Rolling suitcases
Suitcases on wheels are great for holidays…. at the Hilton. We cart a considerable number of our possessions up to the hospital for an admission in these suitcases. They also help us trundle home a ridiculous amount of medication from the hospital pharmacy.
Everyone needs a fridge. Not everyone stores insulin in their egg compartment or a week’s worth of intravenous antibiotics in their veggie crisper. On occasion, a bar fridge has accompanied PWCF to hospital admissions. They’re perfect for storing left over takeaway Thai and other edible food stuffs in the culinary challenged hospital environment.
7. A cheap ball point pen
If we’ve set off for a weekend away without a PEP* to do chest clearance and are freaking out about impending suffocation… we have one last resort. In a pinch, we can dismantle a ballpoint pen so we are left with the plastic shell. The hole on the end just might give enough resistance to approximate the PEP effect until we are happily reunited with our device. Fingers crossed.
We have eight pillows on our bed. Dave uses two. I use six. Six seems rather extravagant at first. However, my pillows come in various shapes, sizes and firmness so I can create the perfect incline to prop me up and stop my coughing each night. Sleeping horizontally eluded me for years. Happily, since K+, more and more of my pillows are now being flung onto the floor instead.
9. Express Post bags
These bags are fantastic for sending urgent meds interstate to friends who accidentally, but disastrously, leave their daily meds at home when they set off on holidays.
PWCF who have a PICC line* need to keep their arm clean and dry. But they also need to bathe to remain socially acceptable. Using Gladwrap liberally to seal the PICC line site and dressing is a winner!
That’s all folks! Feel free to comment on the Capturing CF Facebook page to share your everyday items which you hijack for CF related purposes.
* PWCF = people with CF.
* CFRD = CF related diabetes: an entirely different version to type 1 or type 2 diabetes to spice our lives up.
* PEP = positive expiratory pressure: a device that we blow through which has different sized holes to create positive air pressure behind the mucus secretions in our lungs to help us move them up and out.
* PICC line = a plastic catheter entering a vein at the elbow and travelling along that vein to end at the heart through which intravenous antibiotics can be administered.