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?