I didn’t realise anything was wrong until I tried to lie down to sleep. Every time I approached horizontal, something squelched in my chest. I could feel the gunk and goo moving around as I tried desperately to cough it away. My breathing sounded odd, like something was blocking the windpipe. That night, I tossed and turned, coughed and spluttered… barely sleeping, as I struggled to find a position that I could breathe easy in. I’d never experienced anything like it. Eventually at dawn, I drifted off, propped up on pillows. Colds and flu and infections and viruses are rife in the world of chronic illness. Despite having yearly flu jabs, carrying antibacterial hand-wash, avoiding poorly friends… at this time of year, my PH Facebook group is full of posts about illness. It is unsurprising really. We regularly take immune-suppressant drugs; sabotaging our own body’s army each day, leaving just a few feeble squaddies to defend us against attacking viruses! We are regularly forced to sit in GP waiting rooms full of germs, stand in pharmacy queues behind ill people, and wander hospital corridors filled with bugs! Therefore I am incredibly thankful and surprised that during these past five years of PH, I’ve only succumbed to one mere cold! Amazingly, I’ve managed to avoid all of the other day-to-day illnesses circulating in society. Until now that is. Thirty-six hours after a routine GP visit, it seemed my body was under attack. An early Christmas present from a fellow patient! 😉
After my worrying night of barely sleeping and breathing struggles, I booked myself an emergency GP appointment. But despite being able to clearly feel and hear the gunk myself when I breathed, he couldn’t hear any crackling on the lungs! Frustrating! Normally I’m confident and happy to defend my view during consultations, but he slightly intimidated me. An old-school, authoritarian type (thankfully a locum); he told me off for panicking and coming in, and sent me packing. I timidly left the surgery with my tail between my legs, awash with guilt for wasting his time! 😛
But it turns out it was a chest infection. After five days of plodding along and trying to get on with it. After five days of inhaling steam, overdosing on vitamin C, smothering myself in Vicks vapour rub. After five days of deterioration and feeling worse. After barely sleeping, a laryngospasm during the night, a worsening cough, my oxygen saturations falling. After not moving off the sofa, being looked after and waited on by my Mum and Phil. Finally I plucked up the confidence to go back and be re-seen by one of my usual kinder doctors. I left with antibiotics, and a renewed belief that I know my body well enough to recognise when something is amiss. Lesson re-learnt.
I remember remarking to Phil, how novel it was to have an illness where a simple pill was going to quickly cure it! With my track record, I should have known better. 😛 Turns out I’m one of the 1-in-a-100 whose body hates antibiotics so vomits for the first twenty four hours after taking it! Turns out the simple pill that cures most people’s chest infection, didn’t cure mine… or help at all. There followed five horrid, scary days of increasing symptoms and increasing panic!
I know chest infections are unpleasant for everyone, but I hadn’t realised how frightening they are when your lungs don’t work very well to start with! I felt breathless all day, every day. My lungs which were already only working at 30%, were now working at a much lower level. My lungs that normally struggle to extract oxygen from the air, were now facing the added double demons of infection and mucus. At points it was truly scary. I’d focus on breathing in and out, trying to quell the raising panic threatening to explode from my tummy. I could constantly feel and hear the gunk in my chest bubbling around, squelching inside me. Clogging up my chest, clogging up my airway, clogging up my throat. Every breathe in would feel rattled or wheezy as it pushed past the goo blocking its path. Coughing was exhausting, whole body rattling, hacking and barking. But there’d be elation with every tissue of coughed up sticky, clingy, yellow mucus. Relief for a while, breathe easy for a while, catch up on rest for a while. My throat was itchy and dry, constantly craving water. My body couldn’t maintain my oxygen levels as was fighting the infection, and with a blocked nose I struggled to inhale my supplementary oxygen. In the end, I barely moved, but just spent time resting and breathing, resting and breathing. Phil worked from home during the week to look after me, and every weekend my Mum took over my charge whilst Phil was away training for an upcoming fundraising epic.
And whilst all of this was going on, at the back of my mind was a little niggling thought, that this could kill me. I know of people with PH who have dramatically deteriorated after a chest infection. I know of people on the transplant waiting list who have died after a chest infection. 1 in 4 people waiting for new lungs, will not live to see the day that they receive their call- some of those will succumb to a seemingly simple illness that overwhelms their body. Like this. It was scary to think about. So during the day I pushed away the worry, instead focusing on anything and everything else. But it would often creep in to my head at 4am, when I could barely breathe with the gunk rolling around in my lungs. As soon as the GP surgery opened on the Monday after that awful weekend, I re-booked another emergency home visit! This time I’d regained my spunk; so asked for blood and sputum tests to analysis which strain I was harbouring. The Brompton were informed, and were on standby to see me in a few days if there was no improvement. And different antibiotics were prescribed. Happily, after a couple of days I started to feel better. After a few more days I started to breathe easier. After a week I stopped coughing up gunk. And after two weeks I had the strength to leave the house for the first time in a month. It was -and is- such a relief to be getting better! Such a relief! 🙂But although I’m on the home straight, I’m not yet completely hunky-dory. A common and normally harmless after-illness symptom (mucus dripping down the throat), has caused me to have a few laryngospasms. Utterly terrifying episodes where my throat closes up completely. Yep completely. I cannot take a breath in at all, or the throat further tightens, and produces an awful stridor sound. Incredibly frightening! Experiencing full laryngospasms are the scariest moments of my life. Normally I suffer maybe one a year… but in the past week, I have had five episodes. And for the first time, some have occurred whilst I’ve been sleeping! Utterly terrifying! I can’t describe how scary it is to wake up and realise that my body needs to breath, but can’t. Thankfully, each time I’ve remembered to blow out- the only way to loosen the grip on the throat. But I’ve been nervous all week of suffering another episode. I’m constantly drinking water to wash away any excess mucus before it tickles my throat. I’ve now lasted four days without one, so fingers crossed it is stopping. So although it’s been a month of breathing issues, it’s a wonderful time of year to be forced to stay in and keep warm. Enjoying films, eating chocolates and watching the fairy lights on the tree! And as I’ve been unable to move off my sofa, I’ve instead got super organised for the 25th! Presents have been bought and wrapped, Christmas cards written, and the tree covered in baubles.
And I’ve asked Santa for a medical face mask, so I don’t get any unexpected presents from fellow patients when I next go to the doctors for a blood test!