Sunday, November 27, 2011

Packing a Bag

I've been really slack.

Five weeks have passed and I still haven't packed a bag.

I have made progress though - I bought nice new undies (I figure I'll be flashing my bum a lot in the first couple of weeks), and a nice new dressing gown. Hopefully that'll cover the gaping back in those lovely hospital gowns that I'll be forced to wear.

I'm still not prepared for the complete lack of modesty that goes along with being cut open from side to side right under my boobs. Ouch.... makes me shudder just thinking about it.

Anyway, I definitely need to pack a bag tomorrow.

My sister is off on holidays for a week, so if the phone rings in the middle of the night, my brother will need to take me to hospital. I don't particularly want him rifling through my underwear drawer trying to pack a bag while I'm showering in preparation to leave!

I think he'd be just as embarrassed as me!

Wednesday, November 16, 2011

Going to Rehab with Alfred - A Guest Post by Leela Rottman

I've been meaning to share this blog post for weeks. I'd asked Leela about it the day before I received that phone call.... but I digress.

One of the best things about being online is being able to connect with others who are facing a similar situation.

I discovered Leela and her Heart Lung Thing Blog via an article that she'd written for the ABC Ramp Up website. Then via chatting on twitter, I realised that I'd seen also her seen her on QandA, when she'd asked a question from the audience.

Leela has Pulmonary Hypertension and is currently stuck in hospital. Even though we have completely different medical conditions, we're both facing very similar futures.

I really wanted to share one of Leela's articles because she's a fantastic writer. The way that she can put this crazy medical situation into words astounds me.... especially considering the effect that low oxygen levels have on our brains!

Anyway, thankyou Leela for letting me share your article here...



Going to Rehab with Alfred


Recently, I’ve been going to pulmonary rehabilitation.

I’m getting fit and taking charge. I’m becoming an active, engaged sick lady; doing my bit for our staggering health system by comandeering my own wellness program and revitalising my… Er, vitals, I suppose.

But pulmonary rehabilitation is not as thrilling as it sounds. It takes place in a huge echoey gymnasium in a building next to the Royal Prince Alfred Hospital. People, most of them in advanced years, shuffle around, coughing with the pathos of consumptives in 19th Century novels.

Some of them slump in chairs and tell me sad tales of How They Ended Up in This Place. Some of them are on walking frames hooked up to oxygen, and are urged on by sporty-looking physiotherapists with stopwatches. The physiotherapists call out encouraging phrases such as, “Looking super Meryl!” or, “Just one more lap, Bernie!”

Even worse, is the fact that when I’m similarly hooked up to an oxygen hose and walking frame, the oldies seem to overtake me at astonishing speeds. They can really rip around that gymnasium when they want to.
But it’s not all bad. For example, on my first visit I watched in awe as a tiny little old lady with huge owl-like plastic glasses (the envy, I’m sure, of many a Sydney hipster) sat down at a weights machine and proceeded to lift incredibly large and heavy looking weights many times.

Impressive.

And the physiotherapists are actually pretty nice. And I have to admit that when I’m walking in endless circles, being overtaken by numerous old folks, and a physiotherapist yells something encouraging, it actually helps.

The physiotherapy itself is relatively easy; they don’t work you too hard in-case you get too tired and end up worse-off than when you started. But progress is slow. And it’s difficult to get there.

Because there is an odd lack of disabled parking near the hospital, I drive my car to a nearby bus stop and catch a bus that wends its way through Lewisham, Petersham, and Newtown before letting me off at Camperdown. For the first few times, I assumed it would be incredibly boring and took a book to read. I had, however, forgotten the endlessly fascinating soap-opera of inner-city public transport.

Old ladies with brittle mauve-coloured perms who sit straight-backed and vigilant, handbags perched on their knees like well-behaved lap-dogs, murmuring to each other about poor Ethel who finally went into the home last week.

The large woman who, breathing heavily, staggers in on crutches then heaves herself down across two seats and proceeds to tell anyone listening graphic and rather gory details about her latest knee surgery.

The woman with brown-stained teeth and rather a lot of plastic bags who keeps a stash of pressies for a little girl who embarks two stops later. Every week the little girl lets out a shrill scream at the sight of Santa Clause Lady and imperiously demands that she hand over the goods. Last week’s present was a long rectangular box of smokey grey and blue eye-shadow.

I do have to be careful. I can’t get too distracted pondering the age-appropriateness of eye-shadow for five-year olds, because it is vital to keep an eye out for my bus stop. Missing my stop means walking up several long hills and alternating between cursing myself for my stupidity and wishing the disability pension could stretch to a Sherpa Guide and donkey.

Finally, the bus pulls up outside the Royal Prince Alfred Hospital. I then walk fifty meters or so downhill to the building containing the physiotherapy department, which happens to be right next to the Alfred Hotel.

This Prince Alfred must have been a top bloke. Imagine that; being commemorated by a hospital and a pub. Here is a picture of old Alfie. Didn’t he have splendid whiskers?


Sometimes, making my slow ‘walk, walk, stop, catch-breath’ way up the steep disabled ramp outside the building, I imagine his Highness cheering me on with impeccible British aplomb, “You can do it old gel, by Jove!”

After rehab, perhaps he would shout me a celebratory schooner of lemonade at his pub and apologise for the lack of a disabled lift. “So sorry old gel. We hadn’t invented elevators when we built that place. ‘Twas a positively brill effort on your part, however.”

Friday, November 4, 2011

Two Weeks

I'm not quite sure what I should be counting now.

Two weeks since that near transplant experience, or nine weeks and two days on the waiting list.

The bruising on my neck, arms and wrists is subsiding, but I get a really achey back each night from the ten epidural attempts. My back is itchy, but when I scratch it, it's numb. It's very bizarre.

After ten days, that horrible nauseous anxious feeling finally went away. I've been able to start eating properly again this week, but the waiting feels different now.

It's made it even harder to make plans, or committments to anything, because now I know for sure that when that phone call comes, I have to just drop everything and go. Some people face years of this. It doesn't bode so well with my control freak / always maintain committments and promises type personality.

I've had lots of weird and wonderful comments over the last couple of weeks. Some people really don't understand how organ donation and transplants occur.

Hmmmm it's been interesting to say the least....