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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Day 16: My son’s perspective When I attended my regular clinic visits which, for the most part, were at three monthly intervals, I referred to the visit as going to the hospital. Other people, including himself, occasionally went to see a doctor. And although he had not seen anything happen during a ‘hospital’ visit compared to what he saw when he himself when to the doctor, Jarryn noticed the difference in the word — and the fact that I went regularly. I thought it would be interesting to ask him some other questions. I know what it’s like to have a chronic illness, but I don’t know what it was like to grow up with a chronically ill mother. Here are his thoughts: Do you feel you missed out on anything in your childhood because your mum was sick? Mum wasn’t sick when I was little but she coughed a lot. So, no, I don’t feel as though I missed out on anything. I was always busy, riding bikes or my Green Machine, jumping on the trampoline, playing with the dogs, or games with my friends. Mum was always there. Sometimes she rode the Green Machine or jumped on the trampoline with me, and other times she would read while she watched me play. Looking back now, I realize that the times she read instead of joining in were the times she was sick and needed to rest more. Back then, however, I had no clue. She was just Mum who liked to read a lot. Were you ever scared/worried? I knew I had to be more careful and I felt I had to stay away from my friends if they were sick in case I brought something home that could make Mum sick. I guess the first time I really worried, was in Year 3 when Mum had to stay in the hospital for a week, mainly because it hadn’t happened before. I was told she had had a bleed, but she didn’t look hurt. I didn’t understand at the time that it was her lungs bleeding. After that when Mum coughed up blood it made me nervous in case she had to stay at the hospital again. Your Mum never hid the fact that she had CF. Do you think it might have been easier for you if you hadn’t known? No, otherwise I wouldn’t have known why Mum was sick and it would have been easy to invent things that were worse. Did you ever find it embarrassing that your mum would cough a lot? It wasn’t that Mum was embarrassing, she was just coughing. But people would stare at me sometimes as if they thought I should have been doing something to help her. I didn’t like that. What was I supposed to do anyway? It’s not like I could cough for her. Jarryn wrote an updated version in 2020 for CF Strong 31 Days of Cystic Fibrosis Bonus Fact After Flame, my CFWA homecare physio, would finish percussion, I would always thank her for beating me. Which was all fun and games until Jarryn told his pre-primary teacher he had to go home early because Flame was coming around to beat me up. 31 Days of Cystic Fibrosis Extra Bonus Fact I’d always taught Jarryn that when having a new playmate over, he should show them around the house, so they know where important things like bathrooms are. We had recently moved, and Jarryn had started a new school, and his first friend had arrived. I was pre-preparing my IV medications for the next dose, as Jarryn took his friend through the house saying, “This is my room, this is the bathroom, here’s the fridge and that’s my mum shooting up her drugs.”
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Written bySandi Parsons - Cystic Fibrosis Warrior. |