Day 122: 28 September – Escape from the ICU

Author: Mrs A

Location: Perth – St John of God Subiaco Hospital to Forrestfield

Distance walked: 500 metres (ha ha!)

Well, to be honest I had hoped that all this airway dilation malarkey was behind me, but apparently my body has other ideas, and once again scarring has appeared in my trachea (I suffer from rare disease Idiopathic Subglottic Stenosis*). So frustrating, but what can you do? I am so fortunate to have forged good relationships with the expert doctors in this field, and was able to call on one here in Perth to help me. I have to admit yesterday was a bit of a whirlwind, with a post breakfast text message from Dr Shyan Vijayasekaran (Dr Vijay for ease!) letting me know the disappointing result from Tuesday’s CT scan (for those who missed it – my trachea a healthy 1.5cm wide most the way, narrowing to 6mm – think drinking straw – with scar tissue in one area. Explains my breathing issues), and followed by a call letting me know he could pull some strings to get me into surgery that evening. Just incredible. My head was spinning all morning, questions about how the scar tissue could be back, anxiety about more surgery on my airway, what this means for my long term future, and what it means for our trip.

I was wheeled down to theatre around 6pm and was next aware of being in recovery about 8.30pm. I was told I was allowed water, but no food due to the drugs they had given me during the surgery. I didn’t mind though, my throat was so swollen I could barely sip water, let alone imagine anything else.

I was moved into the intensive care unit for the night. The nurses were absolutely lovely. I could speak no louder than a whisper and they were extremely patient and caring with me. On the flip side, the ICU means no sleep. I managed a couple of broken hours, but the inflatable leg warmers which massaged my calves to negate blood clots inflated and deflated every ten seconds and the half hourly blood pressure test also kept waking me up. But I was kept safe and well all night.

The very patient Mr A arrived around 10am this morning to break me out, and brought me back to nurse Tassie. Soup was duly heated up for lunch, and multiple cups of tea provided. He also rushed around Perth picking up the CDs of my CT scan to send to the UK, back to the hospital to pick up the before and after photos of my airway that I had forgotten (doh! – don’t worry, won’t share them here – if you want to see, please message me!), and organising a take out dinner from a local highly rated Chinese restaurant.

Miss Tassie of course was a fabulous hot water cat, snuggling up with me and keeping me warm as I caught up on sleep.

Breathing is not great yet due to the swelling, however I anticipate it will improve over the weekend. Both Mr A and I have our fingers crossed this is just a one off blip in the scheme of things, and we can go back to our adventuring with a nice big airway and no more breathing worries.

*Definition of Idiopathic Subglottic Stenosis – Idiopathic – ‘We don’t know the cause’, Subglottic – ‘Below the vocal chords’, Stenosis – ‘Narrowing’. It’s a rare disease impacting mostly adult women over the age of 25 – in Australia it is estimated around 40 women per year are diagnosed. For more information see here: Beginners Guide to iSGS

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