Facing The Facts

Here I am, back in hospital.

I have a room with a view yet again. It’s almost nine in the morning as I type this, and the sun gleams over the roof-tops and tall buildings outside. There are metallic blue windows, tiled roofs, and pale blue and coral-coloured sides of buildings lit up in the sun. There is a many-windowed building  folded up like a concertina. The Sydney Harbour bridge peeks out from behind a long, tall, serrated structure the colour of bone, and of-course there is good old Centerpoint Tower – now unfortunately emblazoned with the ubiquitous ‘Westfield’ logo, but standing tall and straight nonetheless; bringing back childhood memories of riding up in it’s elevators, peering out through the thick glass at the ant-like people below. These are memories mixed with kid-sized denim jackets, hair-scrunchies, the smell of hot chips, and made-in-China koala bears in the gift shop afterwards.

I have tried, over the past weeks, when things have been really tough, to retreat into memory. Despite years of a debilitating illness, I have some pretty damn good ones. However, I’ve found that it’s just not enough. Recalling the past only serves to melt it further out of existence. All we have is right now, and my ‘now’ is not all that I would like it to be.

Perhaps it won’t ever be. I’m starting to accept this. But it’s a process. Last week the head of the lung transplant team came into my hospital room and told me that I couldn’t be considered for the list because I my weight is still too low, and I have too much scar tissue from two previous surgeries as a child. If I get my weight up they might reconsider because, of-course, they don’t like to leave people with no hope whatsoever.

Sometimes, there really is no hope and you have to face up to facts. That is how I felt on the day the transplant surgeon talked to me. Flolan, the drug that was supposed to ‘keep me alive until transplant’ was clearly not working. I had experienced no improvement while on the drug, and actually seemed to be getting worse. For months I put up with intermittent severe shortness of breath, a side-effect that doctors said would eventually go away. Over the last few weeks it grew so chronic that one day I finally decided I’d had enough and went into St Vincent’s Emergency Department. It seemed there was something more than ‘side-effects’ going on.

There was something wrong with me, all the specialists agreed, but they didn’t know what. Blood tests, chest ex-rays, and a CT scan were ordered. The Hickman line that delivered the Flolan was removed because they thought it was infected, and the drug was administered through my arm, causing a snaking red line along my skin and a constant stinging sensation.

The Hickman line had a small contamination, but not enough to cause the kinds of problems I’d been experiencing. Bloods tests didn’t show up any viruses or bugs either. They would give me antibiotics just in case, and because I did have some kind of inflammation. Perhaps, they said, my condition was simply deteriorating. This is what Pulmonary Hypertension is – you get worse and worse. You stop being able to breathe.

So when the transplant surgeon told me I was no longer able to be on the transplant list, I had the realisation that I am going to die of this disease.

Really, I’ve known this for a long time. One way or another, I will end up gasping my last breaths, bloated and sick with heart-failure. This is how it is. I have a heart that cannot work properly for very much longer. How much longer, I don’t know. My lungs are becoming more and more constricted with Pulmonary Hypertension and they too, at some stage, will fail to give me enough oxygen to live. Even if I have a transplant and it goes wonderfully well, I will end up the same way. I will have, if I am lucky, ten or fifteen good years, and then the same thing will happen – those two very vital organs will fail and I will be back in this hospital ward  laboriously breathing – in- out – in – out – in – out – until one day I stop.

This is my fate and although it is impossible to accept, I can’t stop it from being so.

Since the transplant surgeon’s grim announcement several more things have happened. I was mistakenly given an iron infusion with way too much saline for someone already in heart failure. This caused a heap of fluid to go onto my lungs and I had a very scary night and then a following few days where I was really struggling and there were doubts that I would live. I don’t remember much about this time; mostly I was drugged out or completely fatigued. They gave me morphine, sub-cutaneously, to help open my airways. The sub-cut morphine hurt like hell but I do remember it giving me some relief. I also remember more conscious moments of angrily demanding of the stony-faced circle of doctors at morning rounds that they just figure out a way that I can breathe.

Then one of them came up with the idea of using a CPAP machine to force air into my lungs and clear off the fluid. This actually worked, and even more amazingly, gave my by now incredibly tired lung muscles a break and I was finally able to sleep properly. Wearing it makes me look and sound like Darth Vader, and it’s quite tight and uncomfortable, but, fuck, it’s so damn amazing to be able to breathe again that I simply don’t care. And as the fluid has cleared, my lungs have become stronger again, and I have been able to use it for less and less time each day.

I have also come off Flolan and gone back onto a much milder drug called Sildenafil. This is the drug that I used to be very stable on but that I had to stop taking after moving to NSW at a time when the government had decided it was a no-go as far as funding went.

The best thing that has happened is that my recovery has co-incided with being weaned off the Flolan. This could mean that my condition is not detiorating at all, but that Flolan caused me to deteriorate. My doctors do suspect this, and I really hope their suspicions are correct. Perhaps now that I am off it and back on the wonderfully stabilising combination of Bosentan and Sildenafil, I can get stronger, put on weight, and maybe even get some of my life back. Maybe.

And maybe, qualify for transplant and have a bit of a proper life. Maybe.

I have had so much time, lying in bed here, to think. I think about death, but I also think about what I want from the future, and what I want in the present. I think about my amazing family who have shown an unprecedented level of care and support through all of this. My mother constantly shops and cooks food for me, and stays with me all day, helping me with all the minute tasks I can no longer do. She hugs me or talks to me through the times when death becomes so real it makes me sob out loud with fear. My dad works hard all day and then uncomplainingly comes and sits by my bed, gives me back massages to help me breathe, gets me anything I ask for, and reads books out loud to me because holding them up and trying to read still makes me short of breath. For a few days after the accidental over-infusion, either he or my mother would stay until 3am sometimes, because I was scared of being left alone.

My Aunt, who is a GP flew down from Queensland to see me, as well as to talk with doctors and help us make sense of everything. Another of my Aunts visits regularly and gives me wonderful support, and has been incredibly generous and thoughtful in helping me get anything I need for recovery and/or distraction. My grandmother also flew down from Queensland for a few days, and, as her visit co-incided with the depressing announcement of Professor ‘No-Transplant-for-You’, comforted me through the worst of it and then distracted me from thoughts of death by playing cards with me on my Zombie-edition pack  (kind of an ironic choice of playing cards now that I think of it). My grandmother on my dad’s side, who is not well herself, has also given me heaps of support by calling and sending lovely packages. My always very supportive sister is so busy running the family business and keeping things going I haven’t seen her for ages it seems, but I know she does a lot to help keep everyone, particularly me, going.

And friends – wonderful friends who keep calling and writing even though I am often to tired to respond.

I look out the window down at the park and wish I could be in the cool green grass with no shoes on. I wish I could be sitting the little Italian restaurant in the pergola eating something delicious, or having a coffee. Sometimes I think of what it would be like to have a successful transplant. I think about getting up early in the morning and slipping out and going jogging. Running through a strip of local bush perhaps, finishing up with a walk along Manly beach inhaling the ocean air. If I do get to have a transplant, I will appreciate my second-hand heart and lungs. I will be the fittest, healthiest transplant survivor I can be.

In the meantime, I’ve been getting better every day. I’ve given up thirty years of vegetarianism for a high-protein diet that will help me put on muscle and get stronger. I’m focusing on calories, carbs, and nutrition. Yesterday, hooked up to a walker and portable oxygen, I even went for a short walk around the nurse’s station – amazing, since I haven’t walked further than a few paces away from my bed for weeks.

Death will happen. I have to accept that. I guess I still want to hope that I can delay it for a good long while yet.

The Heart/Lung Drive

I have a confession to make. The concept of organ donation makes me squirm.

I know, I know. This is not a terrific attitude for someone who will probably need a heart and lung transplant in the near future.

But for some reason, the idea of it really irks me. I can’t help it. It’s not only the thought that someone has to die, it’s the pictures that form in my mind at the very phrase – thin-bladed scalpels and open-beaked artery forceps, metal bowls splattered with rust-like oxidised blood. I inwardly cringe when Facebook friends post status updates and links urging others to donate their organs. Isn’t it kind of like saying you want them to die?

Well alright, I know it’s not like that. I know that it’s important to raise awareness of the need for organ donation; that the number of people who choose to donate is critically low compared to the number of people in need. Nonetheless, I wince at the idea, and find myself reluctant to click ‘share’ on any of the links. Even though as someone who may die for lack of viable organs, I really, really, should.

Perhaps it’s also the confronting idea of death itself, the fact that after we die there is simply nothing left except a body; skin, tissues, bones, organs, and glands. We invest so much of our identity in our bodies, yet at our deaths, whatever it is that makes them ‘us’ is no longer present. Organ donation seems to re-enforce this concept; what was once human is now an object to be dissected, analysed and divided up into useable or non-useable parts.

And the language around organ donation is, well, rather yuck, for want of a better word. The word ‘harvest’ makes me think either of creepy Sci-fi laboratories lined with pods of cloned humans, or of giant fields of hearts beating away under a hot Australian sun while some farmer comes along with a scythe and a bucket. And ‘organ’  is a soft, squishy, dark-red kind of word. It’s a goopy, slimy, word. It’s a concept I don’t want in my head.

Oh, and then there’s this (admittedly hilarious) Monty Python skit which happened to be a family favourite when I was growing up. Er, a warning on this one, it’s slightly gory…

Um, yeah. I think that skit might have had something of an impact during my formative years. Oops.

However, a few days ago, a good friend pointed me in the direction of  a short film called ‘The Last Race’ that changed everything.

As the movie was part of last week’s Donate Life campaign, and funded by the Australian Government, I was a bit sceptical at first. I half-expected the usual oozingly sentimental docu-drama – you know, ‘True Medical Miracles’ narrated by a deep-voiced and therefore supposedly credulous host with an odd penchant for repeating perfectly obvious facts ad-nauseum. With heart-juddering dramatic music offset by inspirational pop-tunes when things go well. And they do, of-course, always go well. Because God, as Mr Deep-voiced will tell you, works in mighty mysterious ways.

Luckily, ‘The Last Race’ is entirely different. It’s well written, researched and directed, and features some top Australian acting talent. And rather than being overly sentimental, it’s unflinchingly realistic.

In fact, it was so close to my life it was kind of hard to watch. It was even set in St Vincent’s which is the same hospital that I attend. The main character was a young girl hooked up to oxygen, awaiting a lung transplant. She gets worse one day and winds up in Vinnies gasping and choking through what seem to be her final moments. Watching this was extremely confronting, and it was even more difficult to watch her Dad go through the ordeal as well. A bit too close to the bone for me.

The other patient is a slightly older woman similarly awaiting a lung transplant. She has no family at all and is getting sicker and sicker.

Then there is the young man who is killed in a cycling accident at the beginning of the film. His family are dealing with enormous shock and grief and the very mention of organ donation freaks them out. Will they come around to the idea in time to save a life? And how will the doctors choose which life to save?

The message of the film is the now-familiar concept of the Donate Life campaign – make sure your loved ones know your wishes about organ donation. Of course it also highlights how electing to be a donor can make something good come out of the tragedy of an early death  – but not in a cheesy ‘special gift of life’ kind of way. The viewer is allowed to experience any fears and concerns about organ donation through the families portrayed in the film. Watching this film was gruelling, but it definitely made me think about the process in a different way. Basically, I stopped being such an idiot about it.

I won’t give anything else away, because it’s better if you check this film out yourself. It’s called ‘The Last Race’ and is on the ABC Iview website. Have a look soon because it might not stay up for very long.

Oh, and if brutal realism aint your thing, you might prefer this oh so hip and groovy music video made by some hip and groovy young people for Donate Life in Louisianna, US of A. It reminds me of ‘Glee’, okay? You have been warned.

The Heart-Failure Version of Liposuction

When I first heard about the procedure it sounded just a tad unpleasant.

“A drain is placed in the patient’s stomach through which the abdominal fluid is slowly removed.”

Like, OMG. How totally ick.

Readers might remember a post a few months ago in which I wrote about how fashion and congestive heart failure really do not mix.

Unfortunately, large-scale fluid build-up also brings nagging, keep-you-awake-at-night back pain, a belly button that sticks out like the cherry on top of an over-large pudding, increased pressure on the lungs leading to (more than usual) shortness of breath and the annoyance of lugging around an extra six or seven kilos.

Dr More Dreadful said that I could have this procedure but that the fluid might come back quite soon. However,  as the whole process was said to be painless and required only a day and a night in that hellish place otherwise known as hospital I figured I had nothing to lose (except six of seven kilos, of-course) and decided to go ahead with it.

The procedure itself was painless except for a tiny sting with the local anaesthetic. The doctors and nurses were friendly and efficient and it was over in twenty minutes. After waiting in recovery for a while I was lucky enough to score a bed by the window in the (by now very familiar) Cardiac Care Unit on the tenth floor of the hospital.

Heart patients who get a window bed can look over the park and watch tiny people clip-clopping to work on spindly legs, picnicking on the grass, or playing with their tiny, well groomed inner-city dogs. From one of the rooms you can even see miniature people drinking coffee at cute little miniature coffee tables. You feel as though you could just reach down, and, like a child with a doll’s house, pick up one of the people and move them to wherever you want to.

As night comes it’s even more entertaining. The whole city lights up in patterns of glowing dots of windows and neon signs like the circuit board of a huge computer.

Unfortunately, shortly after I was settled in the pain started. It was slight at first; like the stitch one gets after running. Then it became a round, fat, worm, wriggling around and gnawing at my insides. It was almost bearable except for the fact that every time I moved even one centimetre Mr Hungry Worm suddenly had vivid flashbacks to Vietnam and pulled a Swiss army knife on me.

I had already asked for painkillers but because my doctor hadn’t officially written them up they took a while to organise. Eventually, they brought me something that lulled Mr Worm into some kind of slumber but left him with enough awareness to snap into wakefulness and get all stabby about things every time I moved.

I lay in bed, staring alternately at the view, the turned off-television (the remote was out of my reach) and a sign on the television that read, ‘donated by the Curran Foundation’.

The fluid drained through a thin tube and into a bag that lay on the floor. It was a disgusting yellow colour but I was gratified to see that the bags filled up with it quite quickly. Every few hours a nurse would empty the bag into a measuring jug then write the amount on my chart.

I tried to distract myself from the pain by straining to remember exactly what E.M Forster had written about rooms with views in his lovely novel of that name. They represented an openness to new ideas and experiences, didn’t they? Well this was certainly a new experience. I also took regular peeks underneath my hospital gown to look at my steadily shrinking stomach and to remind myself exactly why I had chosen to torture myself in this way.

This did make me wonder; was this procedure really about feeling better or was it about me wanting to look ‘normal’? Was I going through this terrible pain for the sake of living up to ridiculous beauty ideals, or worse – for the sake of once again being able to pretend to the world that there was nothing wrong with me, that I was in perfect, ‘normal’, good health?

And did anyone look ‘normal’ anyway? Was anyone in continuous perfect health? Rare individuals, perhaps. I began to wonder if I was in the same category as those frivolous people who had breast implants, liposuction, and cheek-bone implants, undertook fad diets, or took expensive vitamin supplements they simply didn’t need.

If this procedure was more about improving my health than cosmetic factors it certainly wasn’t helping the back pain part yet. If anything, being so immobile for hours was making my back hurt more than ever.

This is when I asked for more painkillers and was told I’d had too many already. Oh dear. And so the hours crawled by as I stared out of the window, watched the generously donated television (someone finally brought the remote within reach), and edited a short-story I’ve been writing for a magazine submission. At least I had a few things (besides obsessive and pointless thoughts about society’s attitudes to beauty, that is) to keep my mind occupied.

They told me they would stop the drain at midnight, but when the hour came the nurse said they would keep it going because the fluid was still draining.

It continued to drain all night, all the next day and the night after that. A total of 6.5 L came off and to my delight my stomach became progressively smaller and flatter. I could breathe easier already. And I could pull my hospital gown tight across my middle and think about all the clothes I would now be able to fit. Huzzah!

The pain lessened as the draining slowed, but I still couldn’t move much. I had to use a bedpan for the first time in my life. I’m quite sure this is not the kind of ‘new experience’ Forster had in mind and it is not one I wish to repeat. This is partly because it was three in the morning and I had to rely on an unsympathetic and grumpy elderly male nurse to help me. To be fair, he was probably grumpy because I had been hassling him all night for painkillers.

By day two, thank-goodness, I was able to get up slowly and carefully and sit on a kind of wheeled toilet-seat thing and be pushed by a nurse into the bathroom. It’s amazing how quickly one comes to appreciate things like bathroom privacy. It seemed the height of luxury.

Finally, it was time remove the drain. My stomach, by this time, was as flat as the ocean on a clear calm day. It was like a frozen lake. It was Barbie’s perfect plastic midriff. It was – well, you get the idea. It was gobsmackingly amazing, obviously, and as far as one could get from my increasingly annoying and cringe-worthy ‘baby bump’.

Two nurses came in and told me they were going to take the drain out. Suddenly I was nervous. “Will it hurt?”

“Not at all,” they said reassuringly. “This part doesn’t hurt one bit.”

I wasn’t sure if  I should believe them as they had been wrong about everything else. However, as it had to come out, pain or none, I lay back and helpfully hiked up my gown. They told me to hold my breath while they pulled. I took a deep breath and they began pulling the long, thin, white, tube through the small hole in my skin.

Immediately, sharp pain darted thickly through my stomach. It was agonising. It was like being on a medieval torture rack and having my intestines pulled out slowly and sadistically by a malicious enemy.

“For the last time, will you give up your heathen ways, and acknowledge Catholicism as the one true faith?!!”

“Look, If you people want to argue about which imaginary friend you like best, it’s none of my business. Oooouuuuch!!!”

I begged the nurses to stop, and they did, genuinely distressed that I was having such a difficult time. But after giving me a moment’s break, there was nothing to be done but keep going. So keep going we did. The last part was the worst; the surgeon had made a little loop at the end of the drain, designed to stop it from being accidentally pulled out of my stomach during the draining process. As the nurses pulled the looped tubing through the tiny hole I gave an involuntary and quite loud scream of pain – something which I’ve never done before and which must have alarmed my hospital room-mates considerably.

Then it was over. The nurses – very sympathetic when I’d said it hurt –  were now puzzled because I wouldn’t stop crying. I would manage to stop for a minute or so and then I would start up again. They repeatedly asked me if it was painful and I kept saying no. It did hurt a bit when I moved, but mostly, the pain was gone.

Eventually I stopped crying and inspected the huge puffy bandage they’d put over the site. I felt lighter and could breathe so much easier than I’d been able to a few days ago. My belly-button had even tucked itself inwards again. I had to stay another hour or so for ‘observation’ but my family were coming to pick me up after that, which was wonderful. Soon I would be home.

Since then, I’ve been investigating why the procedure was so painful when everyone – from doctors to patients who had been through it – told me it wouldn’t be.

My Aunt who is a doctor told me that people have a thin protective layer of fat over their internal organs and that because I am very underweight I might not have this any more. Having a drain sitting loosely in ones’ stomach with no protective coating would be pretty agonising.

Looping the tube is also a factor that could have contributed to the pain. Some surgeons stitch the tube to the outside of the stomach instead of looping on the inside (at least I think that’s the case) but for some reason my surgeon didn’t go with that option. Perhaps the loop method is considered more up to date, and I imagine it would be less painful for a patient if they had enough fat covering their organs.

Whatever happened,  having the fluid gone is fantastic and almost makes the pain worthwhile. Honestly though, I don’t think I would go through with this procedure again if it were going to be as painful. I may have a low pain threshold or I may just be a total wimp – or perhaps the procedure really was far more painful than it’s meant to be and I experienced a level of pain that normally would be controlled with much stronger drugs. I have no idea.

Typically for me, I am now paranoid about it coming back and religiously apply a tape-measure every morning. So far, it has stayed the same, a perfect 72 cm. Oh Barbie, you would be so proud.

I am of-course going to try very hard to put on proper weight – actual fat, that is. This is means eating a lot of (low salt of-course) cheese, butter, and foods with carbohydrates like rice, potatoes and pasta – guzzling them as much as possible, in fact. Hopefully now I will have more room in my stomach for food to digest properly.

In the mean-time I’ve become re-acquainted with clothes that I haven’t been able to wear for months. I’ve also been feeling way more energetic. I have less weight to lug around and sleeping has become something I can actually enjoy. The Flolan mixing has continued to go well and I’m hoping that it will start working soon and increase my level of energy.

Favourite Cat Cardigan Lives Again

I woke up early this-morning and instead of having to sit up, struggle to get more air into my lungs and try to recover from the exhausting chore of sleeping, I blinked at the pale sunlight coming in the window, rolled over into a slightly more comfortable position and happily dozed for another hour or so.

It reminded me that it really is the small things that count – wearing clothes you like, breathing easily, and being able to lie in bed on a pleasant sunny morning.

Flolan Preparation or, How to be More like Rambo

Finally, after weeks of waiting for paperwork to be finalised, it happened. I went into hospital and had a Hickman line placed leading from a vein in my heart right out into my wonderful new world of Epoprostenal dependence.

Hickman Line

The line is attached to a small pump in a black bag with a shoulder strap. I have been encouraged to accept and ‘bond’ with my pump by giving it a name. The bonding part is fairly redundant as we are definitively joined by a meter or so of clear tubing, whether I like it or not.

“Heartlungthing, do you take this pump to be your constant companion? In sickness and health, in good times and bad, until death do you part?”

A dutiful, and compliant patient, I stand at the altar of Medical Science and solemnly declare, “I do.” But inside, it’s a grudging consent. More like, “Well I bloody well have to, don’t I?”

Dr Most Dreadful was the one who told me I had to. He also thought I could stay on this medication for years and have a much better quality of life. However, last week the head of the transplant team informed me that the Flolan is only intended to “hopefully” get me through time on the transplant waiting list to when I get the surgery. I am to go on the list ASAP, and if I am somehow chosen for a transplant in a matter of weeks, before we even know if the Flolan will work, I am advised to have the transplant regardless.

I don’t know who I should believe right now.

So rather than dwelling on the multifarious frustrations of life in a confused and often disorganised medical system, let’s turn to something new, exciting, inspiring, and most importantly, educational… Well, not really. But here it is:

The Daily Flolan Routine

Washing Hands

"Wearing a 'Rambo' style headband is absolutely necessary for correct hygiene procedure" (Florence Nightingale, 1855).

Setting Up the Tray...

Drawing Up Diluent

The Flolan is Mixed with 10ml of Diulent.

Mixing Flolan with Remaining Diluent... (*Sigh*... Are we finished yet?)

Golly Gosh! Don't Forget to Clean Your Hands Regularly with Alcohol Gel.

Pushing the Mixture Through the Filter into the Cassette (this part requires pure brute strength as well as a helpful assistant to raise the cassette).

Removing Air from the Cassette

Attaching the Cassette to the Pump (locking it in place with a coin. Evidently, a most solemn moment...)

Putting the Line Through the Air Bubble Detector

Getting Rid of Air in the Line (you really don't want air.)

Checking the Settings...

Clamping both lines and attaching to Hickman line (use alcohol gel and wipes to maintain hygiene of incredibly scary line that leads right into heart).

Viola! Zee Final Product!

So there you go. The exciting world of habitual drug use. I haven’t photographed every single stage, so if you’re using this as a guide; well, don’t.

Most difficult for me, will be organising items such as back-up batteries for the pump, methylated spirits, syringes, needles, and all the other necessary paraphernalia. For folks at home who might not know about this drug, if you aren’t able to mix and administer the dose in time, you can become ill very quickly (I’ve been told three minutes, but I think it’s more like twenty minutes to half an hour) and you are advised to get to a hospital as soon as possible. So I’m pretty nervous about making sure I have everything I need to make it happen on time, every day.

As for a name for the pump, I remain undecided. I know of a patient who refers to their pump as ‘Flo’, and I’ve considered calling mine after Florence Nightingale (who, as well as a pioneer female nurse, was a formidable organiser). In the end though, I’m not really into giving names to inanimate objects, especially this one.

It’s not like other gadgets people have. It is not an ‘iPump 4′ and there are no ‘awesome’ aps you can buy for it. It doesn’t come in an array of ‘hip modern colours’ or have a touch screen. It’s grey and blue colour evokes aged care homes,  hospital waiting rooms, and boring office carpet. It makes weird clicky-winding noises every time it injects medication into the line (at least I think that’s what it’s doing). It does have some potentially interesting functions, but as yet I’m too terrified of accidentally locking it in the wrong mode to investigate very far.

In normal operation mode, the screen displays how much of the drug is left and spells out the letters ‘RUN’. Should I take this as a sign that I should ditch the pump and sprint as far away from it as possible? Doing so might make me a bit out of breath.

Rambo Would Never Run Away from Flolan... Would He?

Supersalt Me

There is a terribly trashy reality television show on cable TV called ‘Supersize vs Superskinny’. On this show, people who are unhealthily overweight swap eating habits with people who are dangerously skinny.

The underweight people cringe and look rather nauseated when suddenly faced with plates piled high with meat, cheesy pasta, creamy potato bakes, and huge slices of pizza dripping with oily cheese. Meanwhile, the overweight people stare in stupefied horror at the miniscule portions of tasteless boiled vegetables, lean meat, and salads without dressing.

It’s entertaining enough when it’s three a.m. in the morning and you can’t sleep, and haven’t been able to do so for the last two nights. For that matter, it’s also entertaining enough at three p.m. in the afternoon when you’ve been housebound for weeks and all you really want to do is sneak off to the nearest highway, hitch a ride, and make a new anonymous life in some overpopulated sprawling city (you know, open a second-hand book shop and fall in love with the flower seller around the corner; that sort of thing).

‘Supersize vs Superskinny’ varies in it’s usefulness to the contestants. Some of them make real changes while others slowly revert back to their former habits.

The way you eat is hard to change. I have always relied on food as an emotional safety net. If I felt stressed out, sad, or angry, I could go into the kitchen and whip up something comforting and delicious and feel like I could cope with the world again. It’s not just the factor of eating nice-tasting food, but the whole cooking process that does it. Chopping up ridiculously huge amounts of garlic and throwing it into a pan sizzling with good quality olive oil. Quickly running out to the garden, picking fresh herbs and chucking them straight in so that you can smell the delicious aromas wafting around your kitchen. Making soups, pasta sauces, fresh salads with feta cheese and olives and lovely salad dressing. It’s all pretty good. It gives you a sense of control, meaning, and fulfilment. And yes, it tastes pretty damn good too.

What I’m finding most difficult about my life right now, is that I’ve been placed on a fluid and salt restricted diet. This is because I have congestive heart failure, and too much fluid and salt would mean a further build up of fluid in my abdomen. Having a skinny frame and looking five months pregnant is bad enough already and, of-course, has dire consequences for my health, so the last thing I want to do is make it worse. I can only have 1.5 L of fluid per day, and no more than 93 mg of salt per 100 g of food.

Well. That’s how it would be if I followed Dr More Dreadful’s advice on this. Actually, he would probably tell me not to eat any salt what-so-ever. Even when it occurs naturally in some foods, like celery. However, there is also a diet sheet for heart failure patients from a nutritionist at the hospital, that says it is acceptable for patients to sometimes have up to 300 mg of sodium per 100 g of food. It also says that if you are out one day and have to buy food from a take-away shop, it is okay to have a sandwich on normally salted bread as long as you don’t have other salty things with it- ie, cheese, mustard, pickles, etc (all the nice things, basically).

Bread is pretty salty. It usually has over 600 mg of sodium per 100 g of bread. It seems strange to me that this is allowable, when so many other things aren’t.

Mostly, I try to find the middle path between Dr More Dreadful’s hardline approach and the part of the nutritionist’s diet sheet that says 300 mg of sodium is acceptable. This is difficult, however, and lately, I have been eating more and more of the 300 mg range, and even adding tiny pinches of salt to things like rice, pasta, and potatoes.

And yesterday I was very bad. We’re talking major deviancy here. I had to go to Manly Vale to have a blood test, and we went to a cafe for breakfast before-hand. I had ricotta cheese - not a salty cheese, but the amount of salt in ricotta varies considerably, so I really had no idea what was in it (not good!) on actual normal white bread with who knows how much sodium in it (dastardly!). And on this abominable salt-laden cheese-fest, I had grilled tomatoes. I asked if the chef could leave off the salt while cooking the tomatoes, but the waiter said that they were pre-made and they already had salt in them. And now dear Reader, prepare to be shocked. I shrugged and said I would have them anyway.

Truly, truly, evil. And today, when I weighed myself, I was 300 g heavier than yesterday. Was it really the bread and tomatoes? Or was it the extra pinch of salt I put on my popcorn the other night? Or is it actually related to some other factor that is beyond my control?

My friends and family have been wonderfully helpful in tracking down low-salt products in supermarkets and cooking elaborate low-salt dishes. The problem, however, is not that there are not enough low-salt foods that I can eat, it is simply that I like salt. I really just want to eat food with salt in it. There’s no getting around it.

So I sympathise with the contestants on ‘Supersize vs Superskinny’. Food is important. It’s hard to break habits. I’m going to have to learn to live with this diet until I start the Flolan, and probably for a few months afterwards before it starts working properly.

Months and months without brie, Camembert, fetta, haloumi, even good old tasty cheese. Without dolmades and olives. Without potato chips or nachos, without my delicious tomato and basil soup, or my hearty potato and leek soup. Without plain old lovely toast and butter. Without San Remo spinach fettuccine with butter and soy sauce (trust me, it’s damn good). Without roast vegetables, mashed potato, and mushroom gravy. Without (shock, horror) proper pasta sauce with actual parmesan cheese. 

Oh the hardship.

This morning after having a mini nervous breakdown over my 300g of weight gain (yes, I’m becoming incredibly neurotic) I made a fairly okayish crepes Suzette. It had no salt at all, which made me feel like I was making a good choice for once, and it was also pretty darn fantastic to actually cook something, as lately I’ve been too tired to do much cooking.

While I do seem to be getting better – no more temperatures and an iron infusion has lifted my energy a little – I’m really just waiting to start taking Flolan. When this happens my life will be a lot worse for a little while then maybe it will get better.

The Strange Case of Dr Less and Dr More

Things with me have been a little weird lately. I don’t seem to be getting better. Every night, my temperature suddenly spikes over 38C and I feel strange. Even my eyeballs feel hot. My mother brings me Panadol and an icy pole, and it goes away after a few hours. The next day I feel the same as I always do; which is tired.

Tired, tired, tired.

Yesterday we went back to the hospital to run tests to find out what the temperatures mean, and for a general check up. We waited for two hours to see one of the specialists who was looking after me in hospital; Dr Less-Dreadful.

Dr Less-Dreadful says things like, ‘You don’t seem to have quite so much fluid on your stomach so maybe your putting on a bit of weight.’ This makes me think I might be getting better, and feel happy; hence the ‘less dread’.

Unfortunately, another specialist, Dr More-Dreadful-Than-Anyone popped in a few times during the consult, shook his head sadly, and said things like, ‘You’re just not getting better. You might not even make it to transplant. We’re going to start you on Flolan as soon as we can.’

When I was in hospital Dr More-Dreadful-Than-Anyone always seemed to be the one who would give me the worst news. These doctors all seem to have differing opinions, and his were consistently the most depressing to hear.

And yesterday, Dr More-Dreadful followed up his usual statement of doom and gloom with, ‘You might do really well on Flolan and not need a transplant.’

Hang on – is this depressing news? The possibility of avoiding big scary monster under the bed transplant? Isn’t this what I wanted? Isn’t this what any normal person would want? You would think that this news would have made me declare my specialist ‘Dr More-Wonderful-Than-Any-Other-Doctor-Living’ and campaign for a national day in his honour.

But it didn’t.

You see, I have kind of been getting used to the idea of transplant. I’ve been thinking that although it’s scary as hell, and painful, and involves a mind-boggling amount of medication just to stay alive, and although there are all kinds of risks and different diseases to deal with afterwards that it might just be okay. I’ve been thinking of how many people recover very quickly, have few problems, and go on to lead almost normal lives, often for more than twenty years.

I’ve been thinking things such as, ‘After I have a transplant I’ll be (almost) like a normal proper person again. I’ll be able to work, travel, wear the clothes that I want to wear. I’ll even be able to fit into my lovely vintage woolen skirts that I miss wearing so much. I’ll actually be able to wear my favourite black knit stockings with little cats printed on them again (yes, I’m a crazy old cat lady; it happens). And if I wanted to, I could get up early every morning and go jogging. I could randomly break into a run and just keep running. I would be able to live in a house that has stairs. I wouldn’t even notice stairs any more. There will be many, many, things that are such huge obstacles now that I just won’t notice any more.

But the aspect of post-transplant life that I felt most strongly about is that I wouldn’t have pulmonary hypertension any more.

I am so phenomenally sick and tired of having pulmonary hypertension. It’s boring and depressing and exhausting and I would love to just not have it any more. I want it gone from my body. It is not welcome, and never was. After transplant, I may well have a host of other lovely diseases, who knows – but I won’t have pulmonary hypertension.

In any case, the entrance of Flolan into my life has snapped me out of all of these rather idealistic thoughts. Flolan is an intravenous drug that is fed directly into your heart via a central line. This means you have a thing sticking out of your neck all the time attached to a pump which you have to re-fill with medication once a day. You have to maintain the site and prevent infection, which could be life-threatening. You have to keep the medication below a certain temperature, so the pump is kept in a little bag surrounded by icy-cold gel packs. It’s a very strong drug, and side effects include bad headaches, jaw pain, and various other lovely symptoms.

It’s a scary, scary, drug.

On the up-side, people on Flolan do pretty well. If the drug agrees with me, I could even be doing many of the things I hoped to do post-transplant.

Dr Less-Dreadful still thinks transplant is the best option for me. He thinks it would give me a proper life, one where I wouldn’t be hooked up to a pump. This could be true, but then I also might have a longer, and nearly as fulfilling, life on Flolan than I would with a transplant.

Both doctors, however, agree that I have to go onto this drug very soon. Whether or not I have a transplant later down the track will depend on how well I do on it, and also on what I feel about my quality of life. So in a few weeks, I will go into hospital again (something I am not looking forward to), have the line placed, then the nurses will teach me how to use this drug without killing myself.

I’ve known about this drug as a possibility in my life for many years, so it’s not a total shock. I’m sick of being sick, and tired of being tired, and even if this drug is difficult to live with, it at least represents some kind of change. Hopefully a good one.

“The horror! The horror!”

I’m out of the hospital now. Life is much better.

When I first went home, I was still using oxygen 24/7, but the long tubing on my oxygen concentrator allowed me to actually walk around the house at will.

Amazing.

At St Vincent’s I’d been literally tethered to the bed by several meters of tubing on a canula coming out of the wall. I also had portable oxygen on a heavy, stiff-wheeled, trolley; but these seemed to run out very quickly, and busy nursing staff were not always available to scrounge up new ones for me. So being at home and suddenly being able to walk up and down the corridor, in and out of my bedroom, into the bathroom, kitchen, and even go sit on our sunny little front porch, seemed an awful lot like freedom.

Exhilarating stuff.

But then, of-course, I got used to it, and started to take it for granted. And then I began to perceive it the way I had before I went into hospital – that is,  as a very long, annoying piece of tubing that becomes tangled up all the time, is always in the way of other people, and always, always becomes stuck underneath a particular corner of the fridge whenever I go in and out of the kitchen.

Not freedom after all.

However, there is another, far more unpleasant aspect of being on oxygen all the time: coughing up blood.

When you have a high level of oxygen flowing into your nose all the time, the blood vessels can burst, and then blood either comes out your nose, or, as happens in my case, runs down the back of your throat and accumulates in a weird kind of rattly cough.

Picture this; it’s night-time and the hospital ward is dark and almost quiet. You’re lying in bed, trying to ignore the beeping of the alarm on your bed-neighbor’s IV pump, so that you can drift off to sleep. Suddenly, you feel this strange rattly sensation in your throat. You open your eyes. “Ahem. Ahem.” Clearing your throat doesn’t seem to help, because there’s immediately more of it. And then more. You sit up. If you don’t sit up, you feel like you might drown.

You fumble for the tissues, for a napkin left over from dinner, for anything. Cough, cough, cough, and you spit it out. It tastes weird. It’s hard to see in the dark, but there’s a dark, shadowy shape in the tissue, a weird blackness to whatever you coughed up. You switch on your mobile phone and use it as a light source (the hospital’s bedside light doesn’t work) and you see that it’s not black after all, but…

Blood! Auuugh! What the hell?

And then you feel the rattle in your throat again, and you have to quickly grab more tissues because there’s a heap more still to come up.

Ugh.

This is not like Nicole Kidman’s character in Baz Lhurman’s Moulin Rouge who tragically coughs up a tiny spot of blood and then dies of TB in the middle of a song about how wonderful love is. Or poor insipid Beth from Little Women, who in between lady-like and restrained coughing fits into a snow-white, beautifully embroidered, handkerchief, tells Marmee and the girls how glad she will be to get to heaven and be with the angels.

This is more like Stephen King’s Carrie. Or HBO’s True Blood. Unfortunately, telekenisis and vampire superpowers are not part of the deal.

One of the handy things about being in hospital, however, is that you can push a buzzer next to your bed and (eventually) a nurse will come, and then you can hysterically demand to see a doctor, NOW, even if it’s in the middle of the night.

So after a bit more waiting, a lot more coughing, and a lot more blood, and using up a whole box of tissues which probably constituted an entire old-growth rainforest, a doctor showed up and told me the thing about blood vessels in your nose and being on oxygen all the time. And the vasodilator drugs I’m taking don’t help. Nor does the fact that I have low platelets, which mean my blood is slow to clot.

Well goody for me.

Since I’ve been home, it’s happened a few more times, meaning that both my parents are now irrevocably traumatised. If it keeps happening, they’ll probably develop post-traumatic stress syndrome and start having gory flashbacks.

“The horror! The horror!”

That is a quote from Joseph Conrad’s Heart of Darkness, by the way, which is perhaps a rather hyperbolic point to make about this situation. Sorry about that.

In any case, since I’ve been out of hospital, I’ve been able to stop being on supplemental oxygen all the time and go back to only using it at night. I haven’t had any incidents for an entire four days, which is wonderful.

So I’m hopeful that I’m getting better; that things are improving. The doctors have given me three months to put on some weight and do some physiotherapy and then they will put me onto the transplant list. I’m still hoping that now that I’m back on the wonderdrug my condition will improve and I won’t need to go on the list.

The list is a scary place to be.

But I’ll write more about that another time.

 

Hospital Life Continues… and Continues…

I’ve been here for just over two weeks now. It’s getting old fast.

Whenever I have the energy, I take one of the portable oxygen cylinders and make my way down to the end of the corridor, where there is a foyer, a view, and a tropical fish tank. Walk, walk, walk, stop. Catch breath. Occasionally I lean against a wall to have a rest. Sometimes I see someone I know; a nurse, a social worker, a nutritionist, and then I have to talk to them, say things like, “Oh yes, feeling much better, thanks. Trying to get some exercise.” A big part of hospital life is constant social interaction.

The fish tank is lit up with ghostly lights and contains several species of fish. The largest ones have fan-like red tails and glide sedately in and out of thick pillars of seaweed , while others are tiny and dart quickly from one place to another. There are round shelled snails stuck to the glass walls, and tiny wizened creatures with six legs and large eyes and thin little feelers that crawl through stringy tangles of seaweed.

After gazing at this fascinating part of the expedition for some time, I go to a room off the foyer that has chairs, tables and huge windows looking out over the green circle of the park and the tall grey buildings all around.

I stand behind one of the chairs and do some exercises, lifting up and down on my heels. Five times, then rest, then another five times. Then I sit down and do breathing exercises. Breath in, breath in, breath in, hold, hold, hold hold, breath out. Cough. Five of those. Five of lifting my arms up and down, five of lifting my arms up and down in a slightly different way.

Mostly, when I’m not attempting what I suspect is woefully inadequate physiotherapy, I watch movies, or sleep. I’m tired pretty much all of the time. I’ve even had to ask friends and family, who have all been wonderfully and amazingly supportive and helpful, not to come in as much because I’ve been so tired.

The day before yesterday they told me I had pneumonia and I thought that explained the tiredness. Then yesterday they told me I didn’t have pneumonia, but another kind of chest infection. They are still trying to work out what it is. I thought I might go home tomorrow, but last night my temperature spiked again and my oxygen saturation was low so I’m doubtful of that now. But you never know with these doctors; they might decide I’ve been languishing on the state dollar long enough, and it’s time to kick me out and see how I go at home. One can only hope.

This week I met another post-transplant patient who happened to be in the bed next to mine for a few days. Out in the real world she works as a secondary-school Drama teacher. Her small and skinny frame is somewhat at odds with her face, which is large and rounded from Prednisone, one of the main anti-rejection drugs. She has what I could only call large suffering eyes and a rather wicked sense of humour. She was very talkative, and didn’t mind me asking questions about her life after transplant. She is going well, usually works almost full-time, enjoys life, and has had only a small amount of hospital visits over the three years since her lung transplant.

While she was here, however, she underwent a particularly horrible procedure called plasmapherisis during which her blood was cleansed of excess antibodies.  Having the line put in was the worst, she said. The doctor put it in the wrong place the first time and had to pull it out again and she could feel it ripping painfully through her heart. She said the actual plasma exchange part, a separate procedure to be done at intervals during the week, wouldn’t be so bad. However, when she came back from the first one she seemed pretty low. She said the procedure had made her feel so nauseous that she couldn’t even look at the walls. The doctors had to stop half way through.

Life after transplant, I suspect, is like this. In and out of hospital. Up and down emotionally. One procedure after another to grit ones’ teeth through. One health crisis follows the next – rejection, anaemia, various types of aggressive cancer. Your teeth can crumble and fall out. Your bones succumb to osteoporosis. Many patients get diabetes permantently.

And it’s not just about the patient. The patient’s family and friends have to go through this as well – endless hospital visits and driving to and from procedures. Endless medical check-ups for a variety of heightened risk factors. Constant emotional support that must be sustained for years and years.

I know there are good sides to transplant. I’m trying to focus on them as well. The other day when my dad was visiting he said, “After your transplant we’ll go mountain climbing,” which I have to admit sounds pretty awesome. Hiking, travelling, going back to uni and actually finishing a degree, getting a job like a proper normal person. These are all things that could happen.

However, hospital life is not exactly conducive of such thoughts. Currently, my world is sterile surfaces, flickering yellow lights, cannulas and needles, portable oxygen cylinders on heavy wobbly-wheeled trolleys and long stretches of linoleum with nothing more exciting at the end of them than eighties-patterned lounge chairs and a fish tank.

Perhaps hospital is the wrong place in which to be coming to terms with all of this. This is where all the bad parts of transplant life happen. This is the place you try to forget in between the other parts of your life. Your busy, proper, normal life – where perhaps, for a few moments every day, you are able to forget you are even sick at all.

Facing a Life in the Medical System

I’m lying in a bed in the Cardiac Care Unit of St Vincent’s Hospital, Sydney. Today is Wednesday, which means that I’ve been here for a week.

It’s 5:30 am and a light is on at the nurses’ station, but my room, which has six other beds, is dark and quiet. I can hear the low whooshing of the air-conditioner and the more urgent hissing of oxygen in the cannula that goes into my nose.

The sounds remind me somehow of the ocean; of being at the beach with the water rushing in and out around my ankles. There’s a dull, hot, itching sensation in the part of my arm where the IV catheter goes into my vein. Yesterday, during a CT scan, radioactive dye was injected there and burned the surrounding area of my skin. I don’t like thinking about these things, so I close my eyes again and see the sun rising pink and yellow over the glassy waves. I feel the cold wetness of sand under my feet and the shock of the freezing water on my skin. The smell of salt and seaweed.

I think about how only a few years ago I went away for a weekend to a friend’s shack on Bruny Island, Tasmania. One night we camped out on the tiny, deserted, beach in swags and woolen jumpers and woke in the blue early morning light. Even though I’d had to sleep propped up with all kind of pillows because I didn’t have supplemental oxygen, and even though it had been annoying and tedious getting back up the steep hill to the cabin afterwards, even though that day I sat by the campfire, watching with muted envy as everyone but me went for a long bush walk, and even though, driving home, I sat silent and afraid in the passenger seat of my friend’s car, noticing my breathing become mysteriously more and more difficult ( the after-effects of a weekend without supplemental oxygen), it had been worth it just to wake up outside, in the midst of that sunrise.

At least I think it was. That is a hell of a lot of ‘even thoughs’.

So now I’m here, in this hospital bed, weighing up many things. What makes something worthwhile? I came in here with an accumulation of fluid from heart failure, which is getting worse. Even with IV diuretics I can’t say with certainty that the fluid is staying off. Everyone here is pushing me to have a transplant, but I’m hesitating. The social worker thinks I’m delusional because I have this idea that if I go back on one of my drugs for a while, I will stabilise, my heart failure will improve at least slightly, and might not need a transplant for years, or even at all.

I probably am delusional. And I don’t know if I even want a life with Pulmonary Hypertension where I am ‘stable’ but can’t do the things I want to do. But transplant is no picnic either. There is a woman in the bed next to me who had a heart transplant seventeen years ago. She is currently sitting in her bed, concealed by curtains, making the most horrific retching and vomiting sounds. Her borrowed heart is failing, and she knows she is likely to die. Her eyes are like dark bruises but her voice is always pretend-cheerful; she likes to joke with the nurses, boss the other patients around, and complain about her slacker ex-husband. After having met her for only a few minutes yesterday, I could see she was somewhat unhinged from reality. Perhaps it’s the only way to cope with having a transplanted heart for that long.

Transplant could let me have a better life for a little while; perhaps a longer while. Once I get over the horrors of surgery and recovery, once I get used to the many drugs I’ll have to swallow, and the many unpleasant procedures I will have to regularly undertake, I probably would get some good years out of it. If things went well, I would be able to go camping all night and not worry about supplemental oxygen. A short hill from the beach back up to the camp-site would be nothing. I’d be able to go on that long bush-walk; I’d feel the fresh air in my lungs and the ground beneath my feet and feel healthy and confident. I could travel, I could have a career. I could go back to uni and study Journalism. I could do heaps of things that I’ve long since ruled out in my current state of health.

But will I get used to the drugs? And the medical procedures? Heart biopsies, every six months at least. You lie conscious, on a table, passive and inert, while a surgeon threads a needle down through a vein in your neck to pull some tissue from your heart so that they can analyse how healthy it is. You can actually feel the heart tissue being cut away. That is not something I want to experience. Then there are lung function tests, CT scans, echocardiograms, six-minute walk tests and bossy nurses who make you cough up sputum into little yellow-capped sample containers.

For the rest of my life I will be at the mercy of the medical profession. This is how it is for me, already, of-course, although this week things have been rather extreme.

All week I have been here, lying in bed, weak and tired. All kinds of people come into this room – I have no control and I can’t stop them. They might take eight vials of blood in one sitting, or give me an injection of icy cold IV diuretics that makes my heart beat erratically. Or they might change the dressing on the cannula in my arm, painfully ripping the strong adhesive away from my sensitive skin. It might be a dermatologist from the transplant work-up team who wants to check my whole body for potentially cancerous moles. Or I might be put in a wheelchair and wheeled by an anonymous and silent orderly down long corridors and into elevators full well-dressed professionals who avoid eye contact with me, to be left in a room to wait for some test or other. And then sometimes my troupe of specialists will come into my room and range themselves in a semi-circle around the end of my bed. Staring down with an uneasy mixture of professionalism and compassion, they will give me the latest bad news. Heart failure. Liver failure. Transplant the best option. Small chance of stabilising, but in the long-term, and most likely in the short-term; transplant of the heart and lungs.

Worst of all is the fact that all of this is my fault. I am guilty. I did it to myself. If I hadn’t stopped taking Sildenafil I never would have ended up here. I could have continued my disabled half-life: sick, but stable, pushing myself through exhaustion and fatigue while trying to appreciate the things I can still enjoy. But I stopped taking the drug. Too expensive. Couldn’t fit it into my welfare-scum budget. Stupid, I know. My family, who have always been extremely supportive, would have paid for it. We could have taken out a loan, if necessary. I know this. I deliberately didn’t tell them. I thought I would try going off the drug. I was still taking the other main PH drug, Traclear, and I thought maybe the Sildenafil wasn’t doing anything anyway.

Also, in the back of my mind, was a small voice of protest. It seemed wrong that I should have to live like this. ‘Stable’ but never, ever, healthy. Never able to do anything. Always tired, always trying so hard to focus on the positive, always telling myself about people whose lives were worse than mine, trying to be grateful for what I had. Always having to shut out how scared and sick I felt a lot of the time. It seemed wrong that anyone would have to pay that much money to sustain such a barely livable life.

In the face of what has happened this week, my protest seems rather trivial. However, I still haven’t made up my mind. How does anyone make a decision like this? Unless my doctors are right and it’s not really a decision at all.

Last night I found a pen, and on the back of a physiotherapy booklet, drew a very messy line graph illustrating my likely prospects with and without transplant.

The first line – the transplant line – goes upwards – heading towards, but not quite reaching ‘optimum health’. Then, after some years, it curves sharply downwards towards ‘serious complications’ and then ‘death’. The non-transplant line is different. It assumes that my health stabilises on Sildenafil, and goes up slightly. Then it continues along in a horizontal line, a fair distance from ‘optimum health’, but also far away from ‘serious complications’ and ‘death’. It continues well beyond the junction where the transplant line turns downwards. Then, at some point in the future, the line curves sharply upwards at a junction marked ‘new drugs and/or treatment’ and continues along for many years at almost optimum health.

I wonder what my specialists will say when I show them my graph. Will they think I am delusional, or will they think I have a fair point?

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.”