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The New Life

Here on the Sunshine Coast life is… Sunny and coastal. What else would it be? Actually, more often these days, the clouds hang low and heavy and grey, wind shakes the shrubs and small trees, and rain hurls it’s self against the tall sliding glass doors of my Aunt and Uncle’s house. A cold summer has turned into a very rainy autumn. In nearby towns, rivers rise and creep over banks, flooding roads and causing many problems.

Here, I know nothing of this. For me there is the house, a small strip of lawn, and then a thicket of scrubby tea-trees that leads down to the ocean. I can’t see the ocean, but can hear it constantly, a churning white noise in the background. On sunny days, I try to get out of the house, which is much easier here where the land is flat, the streets wide, the amenities accessible.  I glide out of the garage on my scooter, along the path to the boardwalk that goes through the swamp.

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Once inside the swamp, it’s a different world. Leaves close over my head, creating a dark, green, dripping, space. There are mini-lakes of tea-coloured water between the trees.  Bush turkeys dart across the path and disappear into the scrub, muttering to themselves. Willy-wagtails hop cheerfully in the wiry branches of the trees, open their beaks and warble sweet high-pitched notes at each other. One can smell growth, life, decay; all of it contained in this tiny strip of ecosystem.

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Down the track a little ways, there is a wheel-chair ramp of sorts up a short slope to a ‘look-out point’ over the beach. Once I’ve navigated the twists and turns on the mobility scooter, there it is: the sea. This prized view that everyone seems to want to live so close to. I gaze out at it’s endlessness, stunned, as I always am, by this glimpse at infinity. Or I look down at the waves; roaring onto and crunching up the remaining strip of sand. The dunes, I’m told, have almost entirely disappeared. Now the ocean chomps at the coastline, eating out great chunks and leaving little behind.

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The first time I went to the lookout point, a family was down there. Two small children ran into the water, giggling as it swished around their feet and curled at their legs, tugging them further in. It made me wish I could run down the short steep hill and plunge into the surf, feel the salt spray on my face. I wanted to be cleansed by the ocean, scrubbed as clean as the bleached, bland, daylight.

During childhood, my sister and I would stay at my grandparent’s house nearby for summer holidays. We would often go to the beach; a different one to this one, but similar in many ways.

I was terrified of the surf, but loved paddling in the shallows, where the water was as clear as glass, sucking me out, then pushing me back in to shore on it’s foam-curled tide. I would find white shells, tiny and delicate as babies’ fingernails, or flamingo-pink spiral shells, or pale grey stones worn smooth in the sand. I loved exploring rock pools, poking at sea anemones, running my fingers through long strands of Neptune’s necklace. There were little crabs that scuttled sideways under rocks or dug little tunnels in the sand and there were schools of tiny little fish, swimming first one way then the other; seemingly for no reason at all.

Watching the kids play in the waves the other day made me think of those times and miss them. I thought; never again will I be able to enjoy such things with quite the same youthful vigour and innocence. Everyone has a moment like that, of-course. It’s part of growing older, part of dying. It’s just not supposed to happen to me just yet.

But why not? People die every day; many of them younger than me. Millions of people live out existences full of harsh deprivation, sorrow, and loss. Why should I be any different?

I can report however, that since I’ve been up here, my health has improved in many ways. On most days I feel stronger, and breathe easier. The house is large, so I walk a lot, and this helps my muscles rehabilitate. The sea-air suits me, and I have far less air-starved, oxygen gasping nights.

I’ve just had a new fluid-drain system fitted and although the recovery was far more painful than any of the doctors and nurses who talked me into it let on, I can already see that it will be a good thing. It is easier to access, and only takes forty-five minutes or an hour, as opposed to three days. The first two times the pain of having fluid drained from my abdomen was incredibly sharp and intense, but today it hurt a lot less. Each time will be less painful as I recover from the surgery- something that makes me very cheerful, as I am a total wimp about pain, and have no tolerance. The new system will mean I can drink a bit more, eat a bit more salt, and be less obsessive (and, let’s be honest, utterly neurotic) about keeping my fluid at a ridiculously low level.

Most exciting of all, there is the possibility of a stem cell trial. If I qualify. But I’m trying not to get my hopes up too much about that one.

So, here I am, on the Sunshine Coast. I’m very grateful for the welcome we have received here, but I’m looking forward to finding our own place. I’ve become a bit of a hermit here; I need to reach out to my friends again, check on how people are doing out there, in their various parts of the world. I’ll feel more myself with all of my things around me again, and my cacti to look after, with various art/craft projects on the go. My mum will plant a beautiful garden, and we might even get some chooks.

And perhaps somewhere I’ll find one of those ocean-side pools where I can at least dip my legs in; feel the salty breeze in my hair. Those old-fashioned lap pools with barnacled concrete sides and corroded metal steps to climb down with. Seaweed will sway in long strands; tiny fish will dart through the water brought in by the waves that so often surge up and wash over the sides, blurring the boundary between pool and sea.

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Same Old, and Then Some New

For about a month, I’ve been stuck inside, flattened by the humidity , heat, fatigue, and other wonderful Pulmonary Hypertension related things such as abdominal fluid drains. And because of the humidity I’ve been using the portable air-conditioner almost 24/7. It is huge and very noisy.

Today I have no drain in, and it is raining in a steady stream. We’re getting a small taste of the chaotic weather as it is up north. I like the rain, it makes the trees look wet and bright and glistening. And the air, for the first time in days, is cool and actually breathable.  The silence, after switching off the air-con, is shocking. And wonderful.

I’ve just been in the outside world. Up to the shopping mall. I used to hate shopping malls. But in boring old suburbia it’s better than rattling around on the scooter looking at houses and lawns and security doors; even the houses whose yards are all tall trees with snaky trunks and long dark green leaves hanging down like curtains, and wild shrubs hunched over sagging fences or sticking out through metal railings.  Unfortunately I’ve seen them all before on other outings.

It’s Sunday, and my dad is here, so we go to the mall together. He hates shopping. But he’ll put up with it for me, and help me carry my bags and get the oxygen concentrator ready and bring down the scooter from the garage so that I can drive it up the steep path. He really should win Australian ‘Father of the Year’ or something. Both my parents deserve medals. I don’t know why they always seem to give ‘Australian of the Year’ to already famous and rich people, because there are people out there who work just as hard and do just as much good, but don’t happen to have rich friends to invite to their charity luncheons at $5000 a head. Or whatever.

My shopping is a boring and lengthy process of scouring shelves for ingredients with low-salt. When I realise they’re out of stock of the only low-salt crackers in the entire universe, I almost throw a temper tantrum. But I console myself by buying some delicious fruit. A mango, some limes, and some grapes. Fruit is my best friend.

Then we take an ice-cream break. This is something I always do when I come to the mall – I simply can’t help myself. I always buy a small cup of lemon sorbet and allow myself three or four delicious spoonfuls. It’s basically frozen water and sugar, so I can’t have too much. But it’s a good sugar hit to keep me going and of-course it helps the endless thirst. My dad eats an entire cup of dark chocolate gelato. Yum. I have a taste – it’s pretty damn good, but I still prefer the sharpness of the lemon.

Then I go to a cosmetics shop and buy a present for a friend – something which I think is beautiful and indulgent and perfectly delightful, and hopefully she will agree. While I’m there I also buy some deep red tinted lip-gloss.

This is the closest thing to make-up that I’ve bought in about two years. When you’re so skinny that wearing an oxygen mask for a couple of days rubs the skin off your nose and leaves you with a red scab thing, you don’t feel like going to the mirror and applying lashes of mascara, sparkly eye-shadow and a pink-peony lip-stick. Or who knows – maybe a bit of artful concealer, some blush, and one of those big powder puff things, would create a ‘healthy glow’ and stop the children from staring?

Last stop is the book shop. Going in here and browsing feels somewhat unethical as I have no intention of actually buying a book. I would like to support my local struggling book-store but my evil plan is to peruse what’s new in the land of literary fiction,  and then go home and buy one of them on my Kindle, hopefully in audio form. It’s nice, in the afternoons, to lie on my sun-lounge on the back deck and listen to audiobooks and watch the sun in trees, or the kookaburras flapping down onto the neighbour’s roof where they poke around for beetles and worms with their long sharp beaks.

It’s wet and even almost cold on the ride home. My fingers don’t seem to work properly. They cramp up. And my feet too. Ouch. Foot cramps are no fun. Bad circulation. And I haven’t used those particular muscles in a while, I guess.

By the time we get home, I’m very tired. Three hours, that’s all it takes these days. Was it worth it? On one hand, I feel lucky to have the opportunity to go out, and to for once have the energy for it. But on the other, I’m getting a bit sick of the suburbia thing. Seeing the same old streets all the time. The same shops, and the same crowds, their vapid, hurried, talk, and their restless children who wander away and gawp at me, or are apt to stumble blearily into the path of my scooter so that I have to remain constantly on guard.

Everyone urges me to get out of the house: “You’re depressed, you need a change of scenery, you need some fresh air in your lungs” and etc… But in some ways going out doesn’t make a lot of difference. Trapped in this house, trapped in this body – not much of a distinction. It’s not like I can leave the house and leave my disease behind, like a forgotten scarf or coat.

However, I am in for a big change of scenery, whether I like it or not. We are moving interstate, up to the Sunshine Coast. More family support up there, affordable housing. That ever sought after ‘beach life-style’ (not by me, you understand; if anything, I’m more of a city person. And I like the bush. The Tasmanian or Victorian wilderness; huge tall trees, streams and river banks crowded with fern trees. The lash-curl sound of bell-bird calls).  But more on that another time. Next time I write in here, some things will be different, and others exactly the same.

An Eight Month Summary

Far too much has gone down over the months I’ve shamefully neglected this blog; especially for one post. So I’ll just summarise as best I can:

Death, death, death, despair, a skerrick of hope, crushed hope, despair again. Loud wrenching sobs; don’t care who hears me or thinks I’m a nutcase. My specialist’s regretful tone, “ There is no more we can do for you. Your quality of life will never improve, you will get worse and worse and then you will die.”

Anxiety, moments of pure panic and hyperventilation. Which are, by the way, super-good for heart-lung disease.

“Palliative Care,” says the specialist. The words enter my brain like the black screen and finishing titles of a movie that’s weirdly short and unresolved.  Palliative Care means hospice, oxygen masks, white sheets, wilting flowers in vases, nurses with drugs in syringes. Scrawling last requests on a notepad. Family hovering, then receding. Higher and higher doses of morphine. Gasping, chasing that illusive next breath. The patches of dark that come with low oxygen. Then letting go. It’s this part I have the most trouble with.

Sometimes I make myself not just think about it, but feel it. Look at it up close. Death is a red neon sign flashing through my body, with letters that make no sense. I’m stunned, confounded, and trapped. How can I be here the entirety of my personality, living, breathing, feeling, eating, thinking; my past and memories, the people I love, the places I remember; and then switch it all off, like a light bulb?

But Palliative Care, that final knife-twist in the ribs from the specialist, turns out to be different to how I had envisioned (at least, so far). When I stop wailing, a nurse tells me that using their services doesn’t automatically mean I will die. “You can use them for a while, then stop if you get better”, she says. I still believe I won’t get better, but somehow the nurse’s kind patience bolsters me to ask to for a referral.

And after that, everything is better.

Now, when my breathing is difficult, I take oral morphine. I have a dark brown bottle and a syringe with which I carefully measure the correct dose, and then I squeeze it into my mouth, swallow, and wrinkle my nose against the bitterness. The morphine usually works. When it doesn’t, I take more, and if it still doesn’t work, I can get panicky and tearful. Anxiety, caused by months of long and severe episodes of difficult breathing, persists beyond good results.

And counter to the specialist’s grim prediction about my quality of life, I now have more good days than bad days. Things are definitely on the up, with blood tests showing this clinically, as well as in my quality of life.

I have a very kindly donated mobility scooter on which I rattle down to the mall, the local shops, the op-shop, or (more recently) go to the Art Gallery of NSW to see the Francis Bacon Exhibition. There is also a cycle track along the rivulet. Here, there is graffiti, rampant weeds, and floating coke cans. Persisting past the whoosh and roar of the highway rewards you with quiet, the scent of eucalyptus; tall gum trees, bark, leaf decay, and bush flowers. Ducks bob around in the rivulet, diving and splashing about, or sunbaking on little islands of gravel… In short, it’s lovely.

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At home, good days are painting on my craft table – efforts of varying success in acrylics on bits of paper, or wooden ornaments from the op-shop, decoupage, paper-making, a fairy garden ornament on which I replaced the *ahem* ‘Eurocentric, heteronormalised’ features – i.e., anything pink, blonde, and ‘princessy’ (in the pic I hadn’t yet removed that silly silver crown thing) – with a red dress, dark skin, and red dancing shoes. Okay, so she still looks a bit like she’s about to go traipsing off to get her nails done for the ball, but there is only so much once can do.

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Or I look after my ever-growing cacti-succulent family, which is in full spring/summer flowering mode. Pink trumpets, puffy yellow and orange clusters, tiny, pink, flowers that look as though they are carefully crafted in crystallised sugar, white trumpets with delicate curled ends, and many others.

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So that’s the summary of the last eight months. Or some of it. More to come.

 

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?