an autodidact meets a dilettante…

I’m sorry I’ve not been as polyphiloprogenitive (yeah) in my posting lately, with health issues both mental and physical, and work commitments having an impact. So, now I’m going to mix the personal and the general in this glimpse into the complexities of public healthcare.

I’ve been trying for some time to get a proper diagnosis on lung and airways problems that have been plaguing me for some 30 years. Today, a young doctor summarising my condition after a blood test, an x-ray, a CT scan, a bronchoscopy, a biopsy, and a series of lung function tests, used (in passing) the term ‘bronchiectasis’, not for the first time. It was first used a few weeks ago, in the radiologist’s report on my CT scan, and that was the first time I’d heard the term.

Anyway, the analyses and the reports are now done with, and the only treatment offered is a three-month course of broad-spectrum antibiotics, a half-tab a day, to try to clear up some current bugs and give me a fighting chance for the future. The antibiotics may also act as anti-inflammatories, slightly and temporarily relieving the problem of my dilated airways, but there’s no permanent solution, no cure.

Here’s what the USA’s National Heart, Lung and Blood Institute has to say about bronchiectasis:

Bronchiectasis (brong-ke-EK-tah-sis) is a condition in which damage to the airways causes them to widen and become flabby and scarred. The airways are tubes that carry air in and out of your lungs. Bronchiectasis often is caused by an infection or other condition that injures the walls of the airways or prevents the airways from clearing mucus. Mucus is a slimy substance. It helps remove inhaled dust, bacteria, and other small particles from the airways. In bronchiectasis, your airways slowly lose their ability to clear out mucus. The mucus builds up, and bacteria begin to grow. This leads to repeated, serious lung infections. Each infection causes more damage to the airways. Over time, the airways can’t properly move air in and out of the lungs. As a result, the body’s vital organs might not get enough oxygen. Bronchiectasis can lead to serious health problems, such as respiratory failure, atelectasis (at-eh-LEK-tah-sis), and heart failure.

This makes for very grim reading. It sounds like a slow, overall decline is inevitable, though I’m not feeling too pessimistic, perhaps because it hasn’t sunk in yet. There’s little point in trying to pinpoint the initial infection or set of infections that set the ball rolling. My latest doctor, at the Adelaide Chest Clinic, suggested a series of infections when very young, most likely in my earliest childhood, set the stage for the present situation, but that surely is the wildest speculation, with no detailed medical history to go on. Or rather, no medical history at all really. I do remember my mother saying she was worried about my health as a young child because I was so skinny, but I don’t recall that I had any lung or airways problems.

This medical journey has been interesting. I don’t really have a regular doctor, and generally avoid regular visits, in my male way, but when I need to go I visit the Hindmarsh Medical Clinic nearby, and take whatever doctor’s available. So when chesty complications arose after I got what I think was a dose of the flu late last year, I took myself to this clinic to get what I usually get when this happens, a dose of antibiotics. It was the first time I’d been to a doctor about this in a few years. I’ve been on a bit of a health and fitness kick, losing a lot of weight and engaging in regular, if low level, exercise. I like to think these efforts have helped me even with my bronchiectasis, because before that I was having to take antibiotics at least once a year for quite a few years. And before that, I would just put up with what I called ‘the wet webs’, which would wax and wane in terms of hampering my life.

However, they always did hamper my life, affecting my self-confidence, increasing my self-consciousness. I’d avoid people and crowds, worried about my breath and my tendency to break into coughing fits, or have my voice caught in the webs mid-sentence, resulting in intense and embarrassing throat-clearing. But I was also worried about the effects on my throat, which would catch at the slightest hint of cigarette smoke, dust or ‘funny air’. My experience with food and drink, too, has sometimes been a problem. Nothing worse than having a cough explode out of you when your mouth is full of lamb korma (spicy food is a ticklish subject) or your host’s best French champagne. Also, any not-quite-right cuisine would give me a ‘furry tongue’ feeling, a tell-tale first sign of a full-blown, phlegmy infection.

Anyhow, it was only after some years of putting up with this that I betook myself to a doctor, on an occasion when the phlegminess wouldn’t clear up by itself and was clearly getting worse. That was my first experience of antibiotics, and they seemed to always do the trick, so I began to rely on them, all the while reflecting on tuberculosis and consumption and marvelling that the modern world of antibiotics had saved me from the fate of Keats, Balzac, the Brontës, Chekhov, Lawrence, Kafka, Orwell and so many others, known and unknown – that of more or less drowning in my own phlegm.

So it was a bit of a surprise when, back in December and January, I found that the little magic pills didn’t work any more. I was prescribed two separate, different batches, both ineffectual. So the doctor organised a blood test and an x-ray. The blood test indicated that I was becoming anaemic, and the x-ray indicated a cloudy, indeterminate patch in my upper right lung. The Hindmarsh doctors were now slightly more animated about my condition. I was questioned closely about my medical history, especially my smoking history. I was a light smoker in my youth and gave up in my mid-twenties, over thirty years ago. The doctor sent me for a CT scan, which, depending on what resulted from it, might be followed by a colonoscopy. He was particularly concerned about the anaemia, which was unlikely to be caused by poor diet.

To over-simplify, there are 3 main types, or causes of, anaemia. First, there’s blood loss, either of the rapid kind (haemorrhaging caused by an accident or major trauma) or the slowly leaking kind, which can have a variety of causes, including cancer. Second, there’s destruction of the red blood cells (hemolysis), which also has many causes, such as bacterial infections. The third is deficient red blood cell production. I now presume my anaemia was of the hemolytic type, but my doctor probably worried about blood loss as a result of bowel or colon cancer, though I didn’t have much in the way of gastrointestinal symptoms.

So I went off for my first ever CT scan, a fascinating experience in itself, and a few days later, once Hindmarsh had received the radiologist’s report, I made an appointment to discuss the findings. When I arrived the receptionist gave me a copy of my CT scan and the radiologist’s report, which I read in the waiting room. It was pretty hard to digest. First it reiterated the finding of the x-ray – ‘ill-defined shadow right upper lobe on recent chest x-ray – pulmonary mass’. Then the radiologist, a Dr Ron Edwards, presented his own findings:

There is extensive abnormality in the right lung more marked in the upper lobe with dilated, thick walled bronchi consistent with bronchiectasis, evidence of mucus plugging and areas of confluent parenchymal density, the appearance is thought to be that of inflammatory change most probably allergic bronchopulmonary aspergillosis. The left lung is fully expanded and clear. No pleural abnormality is seen on either side. There is no hilar or mediastinal mass or lymphadenopathy. No abnormality is seen in visualised upper abdominal organs.

Conclusion: Extensive abnormality in the right lung particularly the upper lobe consistent with inflammatory change most probably allergic bronchopulmonary aspergillosis although correlation with history and clinical findings is suggested.

At first I thought this doctor just liked parading his polysyllables, but then I was prepared to give him the benefit. I’d try to tease it all out and look up the key terms on the net when I got home, and meanwhile my Hindmarsh doctor might further enlighten me.

The doctor in this consultation wasn’t my usual one, and his response to the radiologist’s report was ‘eh? I can’t make head nor tail of this’, which was kind of reassuring, but after a few minutes of examining it and looking up other references, he recovered enough to say that the next step was a visit to the Adelaide Chest Clinic for a probable bronchoscopy to try to get clarification or confirmation of the finding. He told me that aspergillosis was a fungal infection which generally required long-term antibiotic, or rather antifungal medication to clear it up. The good thing, though, was that there was no sign of cancer. I asked whether the aspergillosis, if that’s what I had, might be the cause of the anaemia, and he said, ‘oh yes, most definitely’.

So I went home, looked up as much as I could on the net, and waited to hear from the chest clinic. I soon received a letter which gave me an appointment time for six weeks later, and which pointed out that this was a consultation only. I was annoyed at the long delay, especially as my cough and my phlegm problems weren’t getting any better. Yet somehow the idea that I might have a fungal infection (and I now imagined I could feel the spores in there when I sucked air into my lungs) gave me a strange hope, as if shifting this gunk, with whatever difficulty, would solve all my bronchial problems once and for all. I read, too, about bronchiectasis, but preferred to banish it from my mind.

Eventually, consultation day at the chest clinic arrived. The doctor, a brisk young fellow of Asian appearance but with an Aussie accent, immediately asked to see the CT scans I’d brought with me. He pronounced them ‘rather alarming’ and proclaimed that I wouldn’t have been kept waiting for six weeks like this had he seen them before. The doctor’s note hadn’t prepared him for this. He beckoned me over to look at the scans pegged to the screen – ‘no, no, closer, look… This cloudy mass here, most unusual, and only in one lung. See this lung? That’s how a lung should look. But this, this… Mmmm, I don’t know… we’ll have to have some further tests.’

I already knew this, but again I was somehow reassured. If this cloudy stuff could be removed, my lungs, or rather, my lung, might be returned to its pristine state and I’d be cured.

But it seemed to me that he wasn’t aware of the radiologist’s report. I had it with me, and I mentioned the possibility of aspergillosis. To my surprise the doctor waved away the report as I started rummaging in my bag for it. He looked quite disdainful in fact. ‘We can’t tell what it is, that’s why we’ll need to do a bronchoscopy, and take some material out of the lung..’

He then began to question me on my medical history, especially my history of smoking, just as my Hindmarsh doctor had. When he asked me about how long I’d been having these throaty infections, I talked about my term ‘the wet webs’, which I’d been using since the eighties, but he cut me off, seemingly bored or irritated by this flight of fancy. He asked me about exposure to chemicals or any other potentially damaging agents, but I couldn’t enlighten him. In fact, when I began to tell him about a dodgy, salt-damp-ridden flat I’d rented more than 20 years ago, and which I’d since considered might be a factor in my ill-health, he again cut me off as if it was obviously irrelevant. Finally, he took me through the process of a bronchoscopy and a lung function test, scheduled for a week and a fortnight’s time respectively.

At the end I had to ask, ‘so do you have any real idea what this infection or blockage of the lung might be?’ He shrugged, ‘It could be one of many things. It could be aspergillus. It could be cancer – but I don’t think it’s cancer. The biopsy should clear this up for us.’

It wasn’t really until after this consultation was finished that I looked back on it with some irritation. I was particularly annoyed that this doctor had waved away the radiologist’s report. Why? Was there some rivalry between radiologists and chest clinicians as to the reading and interpretation of CT scans? If so, should there be? Surely radiologists look at these scans day in day out, perhaps over many years. Or – who knows? – maybe this report was by a young radiologist keen to impress, and the clinician had seen too many over-ambitious reports that missed the mark completely. In any case, I’d taken the report seriously, enough to familiarise myself a little more with bronchiectasis, aspergillosis, hilar and mediastinal mass, parenchymal density, and lymphadenopathy. And I don’t think these efforts were wasted. Even after a brief perusal of this report, my Hindmarsh doctor was able to assure me that I didn’t have cancer. But the clinician, having dismissed the report sight unseen, had again raised the cancer spectre. Surely this was highly irresponsible – though I was quite confident that cancer was a non-issue.

So next on the agenda was the bronchoscopy, which from my perspective was a non-event. I arrived at the hospital at about 8.30 and was released around midday. This was my first experience as a hospital patient since an ear operation as an eight-year-old, nearly fifty years ago. I’d been told of the risks, of course, which included pneumothorax or a collapsed lung as the worst case scenario, and I was nervous of hospital infections and the like, but all seemed to go well. In fact I was amazed at the magic of modern anaesthesia, because at one instant I was on an operating table with three medicos about me chatting and faffing about with tubes, and in another instant I was back in the ward, coughing and spluttering just as before, and it seemed only half an hour or so had passed. So I’d both lost and recovered consciousness instantaneously, and surely a whole book could be written about the science involved in this, and if one has been written I’d love to read it.

The aftermath was interesting though. I felt quite chirpy on being given the all clear at about midday, and we had a pleasant meal in the hospital canteen, on a balcony overlooking the botanical gardens. But by the time I got home I was feeling quite drained, and I slept on and off for the next 24 hours. I took several days to recover the old circadian rhythm. Nine days later I was back at the hospital’s thoracic unit having a lung function test, and later in the afternoon I had another consultation at the chest clinic. It was another doctor this time, a tall kindly-seeming young man who appeared to be an intern, from his general sense of unease and uncertainty. He clearly knew nothing about my case, and sat staring at some records on his computer while I waited faux-patiently. Finally he excused himself, saying he needed to consult with his boss. He returned, seemingly a little more sure of himself. He told me, as I’ve already related, that I had damaged airways, probably incurred as a very young child, and this has led to me having regular infections over the years. This would likely continue, because bronchiectasis was a difficult, essentially untreatable condition. I pulled him up on the term, saying I’d done some research on it, to which he replied, ‘Well then you’ll understand that there’s nothing more we can really do.’  I asked then about the white cloudiness in my lung, which I’d hoped could be particularly targeted. He just shrugged, as if to say it was just another one of my regular infections. I took from this that there was no sign of aspergillus after all. ‘What we can do, which should help in the short run, is prescribe for you some’ – and here he mentioned a drug of some sort, which I didn’t catch – ‘which you should take at a half-tab a day for the next three months, and that should clear up any existing bugs in your system. I’ll arrange that with your doctor, and you won’t need to come back here again.’

I felt that I’d been politely, if rather awkwardly, dismissed, and I left the consulting room in something of a daze. I took a wrong turning, and after walking down a winding corridor I found myself suddenly at the entrance to the clinic, having by-passed the reception area where I came in. I stepped outside, vaguely wondering if I was supposed to have paid some money or signed some forms, but I had no desire to turn back.

I felt something like futility, that these past few weeks had taken me nowhere. I had a diagnosis of sorts, but bronchiectasis, I knew, was an often undiagnosed and somewhat neglected condition. There was nothing sexy about it. It wasn’t life-threatening like tuberculosis or pneumonia, though it would probably be the death of me in the long run. It wasn’t of course a disease in itself, rather a facilitator of disease and infection. What frustrated me, as I reflected on the situation over the next few days, was that nobody had been straight enough with me to say ‘you have bronchiectasis, this is your prognosis – within broad parameters – and this is how you might manage your condition in future…’

I’d spoiled myself. I’d been reading one of Oliver Sacks’s recent works, The Mind’s Eye. I’d read Sacks before, and I’d been very impressed with his manner and his reflections on seeing him at Adelaide Writers Week a few years back. But I couldn’t help but notice the difference between his medical practice in good old New York City and my experience in good old Adelaide. It seems that most of Sacks’s patients not only have unusual and trend-setting neurological conditions, they also seem to be overwhelmingly talented musicians, writers, artists or fellow physicians, most of whom seem to end up becoming his BFFs and regular swimming partners. Filthy lucre never gets mentioned, of course, but it’s all a long way from my experience as a nonentity on the national health scheme, where I have to deal with an array of medicos none of whom even know me by name.

Of course I’m lucky that I get to have highly trained doctors anaesthetising me, pulling bits out of my lungs, and using sophisticated machines to light up my chest cavity or to measure my lungs’ functionality, all at very little cost to myself, but in the end there’s a condition I have, barely referred to by my doctors, with is untreatable and largely uninteresting, and I just have to live with it. Of course I should get my flu shots regularly, but no doctor has given me this advice.  The fact is, I’ve learned much more about my condition through the internet than through the medical system, and that suggests my future direction. Go to reliable websites, obtain all my own medical records as far as I’m able, and become as self-reliant as is medically possible.

I’m lucky, too, that I don’t feel sick. I have the occasional coughing fit, and a more or less regular cough, but it isn’t painful and it isn’t getting appreciably worse. My situation seems to have stabilised, and I’m able to go to work regularly and do a reasonable job. I do feel tired more than I would like to, but that might be age, or it might be a psychosomatic reaction to the knowledge that I have some kind of blood-loss (i.e. not iron-deficiency) anaemia. In his book The Heretics, Will Storr summarises recent findings about the placebo effect:

A 1998 study by researchers at the University of Hull found that up to 75% of the effect of brand-name antidepressants such as Prozac might be down to placebo; Professor David Wootton of the University of York has written of one estimate that indicates that ‘a third of the good done by modern medicine is attributable to the placebo effect’; while an acknowledged world expert, the University of Turin’s Professor Fabrizio Benedetti, has gone so far as to say that ‘Placebo is ruining the credibility of medicine’.

To me, this is all more fascinating than disturbing, but it’s obvious to me that these psychological effects work both ways – if you’re told that you’re anaemic, and that physical fatigue is one of the symptoms, you’ll surely slow down more than if your anaemia is unknown to you. What’s more I have no idea how anaemic I currently am, just as I have no idea whether my bronchiectasis is severe or mild.

I saw my original Hindmarsh doctor a few days ago, almost two weeks after my final visit to the chest clinic. He hadn’t received any word from the clinic about antibiotic medication, but he had received some kind of interim report from them. To my surprise, there were signs of mycology in the lung, and it seemed they were still in the process of analysing the data, or at least that’s what my doctor surmised from the lack of communication about treatment. On this occasion I grumbled a bit more than I usually do about the slowness of the process towards treatment, and the lack of clear communication about my condition. I asked about medical records, and the doctor was quite happy to facilitate that, though I sense that I’ll have to keep on about it to make it happen. I also mentioned my anaemia, and whether I could have a blood test to see if it was improving or worsening. I also complained of slightly darker and strong-smelling urine, so blood and urine tests were arranged on site immediately. Interestingly, after the blood was taken (and I was surprised by how much was taken out) I walked home – a 15 minute walk – and immediately conked out, falling asleep at about 4pm and waking up at about 11.30 the same night, which again disrupted my sleeping patterns for a while. Yesterday I received a call from reception at Hindmarsh. Apparently some word has been received from the chest clinic, so at last I’m to have some medication, I hope.

So that’s the story so far. Interesting thoughts on perception and reality, though. Having only recently learned about mycology and aspergillus, I became more or less convinced that I was indeed suffering from a fungal infection. I could feel it in my lung. Hard to describe the sensation, but something cold and vaguely furry, spore-like. Of course I knew that the information about aspergillus was infecting my perception, and yet…

And then, at my final consultation at the chest clinic, I was led to believe that there was no aspergillus. I was to take a broad-spectrum antibiotic, not an anti-fungal, and that might or might not clear up the bugs in my system. So what was I to make of my perceptions?

Enough, though, for now, as this blog post has gone on long enough, and I’ve not posted in a long time. There will be more though on this subject, as I’ve been to the doctor again, and have obtained some interesting medical records, and the mycology question is still unresolved.