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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?


8 responses »

  1. It is so amazing to read this. I doubt many people can put these feelings into words so powerfully. Thank you.

  2. Hey Leela, thanks for sharing this- much love
    Maude xx

  3. As someone who’s been the recipient of a pair of lungs for 15 years now, I will offer these observations:

    – You talk about ‘facing a life in the medical system’ as some kind of new, horrible prospect, and yet you then admit you’re already chained to it. So my question is, why do you consider a post-transplant commitment any worse than your pulmonary hypertension commitment? Consider the case of ‘average Joe’, with perfect health. They all should go to the GP and have regular checkups, but most don’t. Those people end up with heart disease that went undetected, diabetes that could’ve been avoided, and various unpleasant disorders that might’ve been prevented by some simple lifestyle changes. What was required of them to have avoided these things? Going to the doctor, i.e. being ‘chained’ to a healthcare system. We all need to see the dentist, too. We all need to see a physiotherapist once in a while, when we sprain our wrists, or get a bung knee from running too much. What’s the real difference between average Joe and us? Well, our visits to the doctor are mandated. If we don’t see the doctor, we’ll probably die alot sooner. To me, that’s a small price to pay for the privilege of getting to experience all that life has to offer, despite being burdened with a genetic defect that, had I been born even as little as 60 years ago, would’ve resulted in my death as a young child. Here I am, 38 years old, I’ve almost got my PhD, I’m married, have a child, have toured the world, and am looking forward to the future. I could never have had any of that without a transplant.

    – I think your graph is fundamentally flawed. You talk about the post-transplant experience as though the future is predetermined. The post-transplant experience is as much at the mercy of medical advances, new drugs, new management strategies and good old fashioned luck as your pre-transplant experience. The big difference here is, and without knowing your current state of health intimately (mind you from what you’ve written it doesn’t sound flash), that the best you can be pre-transplant now is, as you’ve stated ‘half healthy’. And that, assuming you improve substantially from your current position. What’s the ‘best you can be’ post transplant? Perfectly healthy, that’s what. Now before you make any claims about my own experiences, let me give you some insights. I’ve not been “perfectly healthy’ since I had my transplant, not once. Well, I might’ve been for about 2 months, but then I got lymphoma because of a viral infection. Ok, so I got over that but my lung function was whittled down to about 45% of normal. So I’ve lived as a ‘half healthy’ person for over 10 years now, and now have recently had a bad run that means I’m now sitting at 32%. In short, my experience has been much less than perfect. In that time however, I’ve seen and known people at all ends of the transplant spectrum. Lungs, hearts, heart-lungs, etc. I’ve known people that died within months, and I know people that have lived for 20 years or more, and continue to remain well. I’ve known people who, like me, have had to remain close to the doctors the entire time, and those who have had their transplants, done their rehab, and have then been lucky enough to say ‘ta-ta’ to the sytem for all intents and purposes, returning only once or twice a year to get the tick of approval.

    How did I decide to ‘go for it’? My doctors told me I had a 50% chance of living for 2 years. At that time, my lung function was about 22% of what it should be. I was crippled by a lack of oxygen and an excess of carbon dioxide building up in my blood. Then I considered the post-transplant possibilities. I had an (at that time) 80% chance of living for 1 year, and a roughly 70% chance of living for 2. So the odds were better. Then I considered what my quality of life would be like in that time. I could breathe, I could enjoy life, even if it was for a short period of time. For me, it was an open and shut case. Statistically, I had a better chance of living, and my life would be better, even if I died in the end. There was no question!

    As I see it, unless you know something the doctors don’t, then when they tell you it’s time to get transplanted, then you have to listen. In my mind, the only real reasons that exist for rejecting their suggestions are:

    – Mistrust. Is there a commercial imperative? Unlikely… Do they dislike you enough to put you through it unnecessarily? Unlikely… Do they make mistakes? Yes, but not on purpose. The chances of medical negligence causing surgical or medical misfortune in such cases is, I would suggest, on par with getting hit by a car, or even making a mistake in your own medical management, such as.. deciding not to take Sildenafil without consulting your doctors.

    – Religious reasons. Are you a Jehovah’s Witness? Are you the follower of some other religious faith that would preclude a transplant? Not being a religious scholar myself, I can’t argue on those terms.

    – Philosophical reasons. Do you disagree with using someone else’s organs to further your own life? That’s a tough one. The system supports it, the public largely support it, and, depending on your religious leanings, even your priest would support it. I don’t deny anyone the right to reject the premise of recycling body parts, particularly when it’s the person who’s going to receive them doing the rejecting. It’s completely your call.

    Obviously I’m very much supportive of transplant as a therapeutic option. Of course I would’ve preferred to have seen my own lungs rehabilitated, but there simply was no other course of action if I wanted to live. If your opinion is that there IS another course of action to remain alive, and with some measure of a quality of life, then go for it. If the doctors are telling you that the risk of dying is such that transplant is your better option right now and you choose to ignore them (which I’ve done plenty of times in the past), then you’d better have good reasons for doing so. Hopefully some of the things I’ve said will be useful. Best of luck, whatever happens.

  4. It’s one of the toughest decisions of all time. Weighing up the risks and the benefits and the fact that you’re tied to a hospital forevermore. I wish I had some words of wisdom, but I don’t.

  5. It seems to me that quality outweighs quantity. Were I in your position I would think long and hard about what quality meant to me. Would simply observing life be considered quality or would living it be a better definition? It seems to me that you see duration as being the ultimate definition of quality life.

    If in the end I decided to stay the course but was constantly wishing to be in others shoes as I watched them living, I would only have myself to blame.

    I have nothing but hope that there will be a cure found for such a debilitating disease. I hope that you are able to live a long and “optimally healthy” life.

  6. Leela
    I do not know you personally and have not spoken to you before.
    My name is Trehna and I am Treasurer for PHA AUST.
    I am sorry you find yourself in hospital and hope that you are soon a little
    ‘more stable’ than today. I think your comments are normal weighing up the pros and cons of transplant. Yes it is a hard road, the drugs, the tests are relentless but HOPEFULLY
    you will have many better months/years before the line on the graph trends downhill. This HOPE is what most people have, we would all be better off without any medications – but the truth, the reality is that you, I and all the other people with you with these awful rare diseases have to be brave and face the day, use whatever you can to live life to the fullest – when it is gone that is Final.

    Leela – I have Pulmonary Sarcoidosis and secondary PH and now many other things all interlinked to this auto-immune rarity – I am on oxygen, I am confined by my 4 walls but also because my disease is even rarer than PH there are no proper medications for it, we hang off the back of other diseases, trialling meds to see if they work. 2 years ago things got so bad for me that a transplant workup was done – result was a yes but too well at the moment, the teams advice to carry on with Meds that I was on and am back on now. Those Meds combined with a few others robbed me of all my white cells earlier this year, I also got Sepsis and a bug that went to my brain. I recovered from it, I had to learn to walk and talk again. But now I am battling massive fluid retention, I also seem to now have a S.F.N. Sarcoid, which is taking away my short term memory bit by bit, I have lost touch sensation in left face and neck, and the lastest seems to be that i can no longer walk on right leg(whether this is related or not I do not know). Yet I carry on, I certainly have bad days when I too ponder on whether the world is not the place for me to be any longer and that this is too much or too cruel. However I still keep trying because i would like to help others with this as much as possible,
    I was born for a reason, I have skills I can use, I have boundary’s I can push. The option for Transplant for me I suspect has been taken away because of the ‘Neuro Sarc’ issue, I would fail their health requirements and in 70-80% of people Sarcoid comes back into the transplanted organs after 3 years. only 1 patient in WA ever transplanted, hence their initial reservations!

    Life is an uphill battle for everyone, and perhaps your path is going to take a different path than you expected, but don’t give-in, do not stop fighting this disease because it will not stop fighting you(yet). You are young and should have a good life ahead of you after this.

  7. a very honest & candid entry Leela.
    sending you a firm & warming e-mbrace.

  8. I am living with a congenital heart defect & secondary PH. At the moment medication is keeping me stable enough to avoid transplant. The thought of transplant absolutely terrifies me but the thought of giving up when things get to that point scares me even more. I am 43 now & have lived my whole life with doctors & medications & hospitals & I would love to just be “normal” but these are the cards I have been dealt & so I intend to make the most of what I have. I can totally understand that feeling of wondering if all the rubbish we have to deal with is worth it in the end but for me I have decided that I will fight with everything I’ve got for as long as I can. I always have been stubborn 😉
    I see the doctors at St Vincents & so far they have managed to keep me plodding along ok.


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