Day 18: Travelling with CF
Ventolin was my best friend on these trips. A portable pharmacy My carry-on luggage nearly always hit its weight limit as I had to carry my small pharmacy on the plane. Although I’d love to be able to be a spontaneous traveller and go on a holiday at the drop of a hat, as with everything else when it comes to CF, traveling requires careful planning. Letters from my medical team with details of my medical history along with the list of medications that I intend to carry through customs are essential. Insurance in a bottle Along with my regular medications, I would also carry oral antibiotics (so I could start treatment immediately if I experienced a problem) and tranexamic acid (which helps the blood clot quickly in case I had a bleed while overseas.) Travel Insurance companies have strange ideas regarding CF and travel. They place a lot of weight on hospitalizations or the administration of IV antibiotics in the last 12 months. Ticking those boxes increases the odds that rejection for cover for CF as a pre-existing condition will be the result. Ironically, right after a course of IV antibiotics is when a person with CF is most fit to travel.
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Day 17: I coughed up cups of blood, then drove myself to hospital
One night I went to bed feeling fine. I woke from a deep sleep in a coughing fit. In my dream, someone was spraying the back of my throat with a water pistol (everyone else has strange dreams too, right?). Eventually, I woke up enough to realise that there was no water pistol and that I was experiencing a massive bleed. I returned to bed, where my son lay sleeping, and continued to cough blood - this time spitting into a cup that could hold around 200mls. When I eventually stopped bleeding, I looked a mess. There was blood over the sheets and through my hair. I cleaned up, then sat upright in bed until dawn. With the dawn came my morning cough, and that sparked another round of bleeding — another another cupful of blood. Once Jarryn was awake, I got him ready for school. As I did, I was discreetly spitting blood into a plastic cup which I once again filled. I drove Jarryn to school before driving myself to hospital. I was hoping to talk my way into doing antibiotics at home, but my medical staff wouldn’t budge. It was the first time since Jarryn had been born that I was admitted to hospital. Snap, crackle, and pop For the next three years, I was a random bleeder. There is a particular sensation, hard to describe, but a hybrid feeling that manages to both push and pull at the same time. After that, you can both feel and hear the crackle of blood pooling in your lungs. So I call it, ‘snap, crackle and pop’. It would strike without warning, seemingly when I was feeling fine, however, an infection had been bubbling away in the background. It wasn't uncommon for me to yell "Cup!" while we were driving. Jarryn would pull a plastic cup out of the glove box and hold it out for me to spit into, until we could safely stop. Three years after my bleeds started, they stopped just as suddenly as they had started. 31 Days of Cystic Fibrosis Bonus Fact As I was collecting Jarryn from my Gran’s after school, I went snap, crackle, and pop, and blood filled my mouth. I never liked to worry my Gran, so I tried to hustle Jarryn out the door before she could notice. Jarryn wasn’t displaying any signs of moving in a hurry. So, as I am a delightful mother, I turned my back on Gran and gave Jarryn the full Gene Simmons — bloody mouth complete with waggling tongue. He moved pretty quickly after that, and my Gran was none the wiser! (And now the lead picture makes sense!)
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Written bySandi Parsons - Cystic Fibrosis Warrior. |