The View from Elsewhere

dropping the vascular bundle

Warning to anyone reading this post: this is material I wrote five years ago.  I posted it to keep the blog turning over while I prepared for studying overseas.  To read this story from the beginning, you need to go back to a post titled 'Adam's Rib' on 18 July 2007. 

**************

I returned several weeks later to the specialist's rooms for the proposed tests. The ultrasound revealed that damage to the veins had been minimal: only tiny specks of clot remained on their walls. My veins were patent: ‘They’re so open I could drive a truck through them!’ the ultrasound technician declared.

She put me through the karma sutra of unlikely overhead arm manoeuvres to test for thoracic outlet syndrome on both sides, then hooked me up to the arteriogram, a machine that looked like something out of an H G Wells novel. Although the vein was partially compressed when I raised my arms above shoulder height, this phenomenon was to be found in most people, the technician told me. Basically, there was no sign that I suffered from genuine thoracic outlet syndrome.

I asked the technician about the kink in the vein I had seen on the angiogram with my arm in the ’stick ’em up’ position. She said that there wasn’t any narrowing of the vein to be seen after the 'ballooning', though the ultrasound technology was not as sensitive as the angiogram, which might be more revealing.

‘But the vein would kink in that position anyway,' she told me. 'It would be stiff after having a thrombus in it.'

I went home and lay on my bed and shook for an hour. Perhaps the clot had been the cat's doing after all. I'd been told that I had a syndrome: where had it gone? If I had had the surgery, I would never have known these results were possible.

from pub drunk to paget schroetter syndrome

Out on the net I found an interesting subculture surrounding blood clots and thoracic outlet syndrome or ‘TOS’. There were thrombosis chatrooms (including 'blood clots under 40s') and an entire website dedicated to TOS, complete with colour photos of a rib removal operation and online discussions of surgical experiences by subscribers with names like 'ribless 1der'.

Turning to PubMed, I found my instincts about the controversial nature of treatment for subclavian vein thrombosis had been right. Apart from basic agreement that anti-coagulants should be used, there was dissension about the appropriate use of clotbusters and surgical intervention. The downside noted in using anti-coagulants alone was the development of venous hypertension in some cases - swelling, fatigue, aching and weakness of the arm after activity, and even significant disability. Clotbusters such as urokinase were promoted as a more effective means of quickly resolving the clot and reducing these symptoms. Others claimed that routine first rib resection should always be performed to correct any underlying structural causes in order to prevent venous compression, thus reducing the potential for hypertension to develop. Still others disputed these findings, claiming minimal symptoms with the use of anti-coagulants, and discouraging the use of thrombolysis and first rib resection as both pose significant risks. There were several cases recorded of patients re-thrombosing after rib resection, most notably in one instance of a major American league baseball player.

second opinion

About a fortnight after my discharge from hospital I went to see Mr Sykes. I waited with the assembled septuagenarians in reception before being summoned to his rooms.

I told Mr Sykes I was seeking a second opinion about treatment for a subclavian vein thrombosis and that a friend of a friend, Nicola Lee, had suggested I ask him for one. I said that while it had been recommended that I have first rib resection, I was uncertain of the necessity of this procedure.

Mr Sykes said nothing, taking notes fiercely while I spoke. Aware of the time restrictions I raced quickly through my story, from Emergency to the Crimean Building.

'I don't like having to clean up other people's messes,' he said finally. 'What's wrong with the hospital!'

in search of lost time

The nervous energy that had sustained me in my trench warfare-style approach to being a patient deserted me and I found myself trying not to cry in front of the other patients. All the cards sent to me featured red flowers and a vase of Sylvia Plath-esque red tulips strained towards my bed - were blood clots on everyone's mind? Friends tried to console me by telling me that if I had the operation I would be 'wasp-waisted' like a supermodel: I had to tell them they were counting ribs the wrong way. Thinking that hospital might be the place for epic feats of reading, I embarked on the second of volume of Proust's In Search of Lost Time.

I didn't get very far. Hospital is a place of constant distraction. People – staff, patients and (worst of all) their visitors – are always coming and going. A fellow patient had a loud and abrasive husband who visited everyday and asked all of us when we would be available for housework again. From time to time, specialists - bow-tied gentlemen who looked like they'd escaped from a meeting of the Royal Society with Darwin - might come wandering between the beds. At night it was like trying to sleep in a youth hostel except with old people and bed pans, and moans and groans that weren’t caused by excessive bonking. Or a railway station: I was reminded of waiting for train connections in the dead of night while backpacking. New patients might be wheeled in at any time, and even more disruptively, existing patients might be wheeled away for operations and returned in the wee hours of the morning. My heparin drip rattled away beside my bed like a restive triffid, ringing an hour before it was due to be re-filled and then another hour later. If you weren't woken by your drip ringing it was likely that someone else's would wake you. After a while I took to wearing a pair of (clean) underpants over my head at night as well as ear plugs.

too much information

Two days later, on the eighth day of my hospital stay, I finally received the information booklet along with a pamphlet comfortingly titled ‘acute pain management system’. For the first time, I learned that I'd been diagnosed with 'thoracic outlet syndrome', the obstruction of any or all of the blood vessels and nerves running between the clavicle and the first rib, as well as details of the surgical procedure and its potential complications. Intriguingly, the rib was removed through an incision at the base of the armpit: tricky, I would have thought.

The team had seemed keener about taking me to see the young man on the ward with the same condition, post-rib resection (because of course something emotional like 'fear of pain' rather than something rational like 'desire for adequate information' must be my problem). When I’d first asked to see him the message had come back that he was still in some pain - ‘but not as much as he thought he’d be in’ – and that he might see me the next day.

The afternoon when I visited the first rib resection patient he was playing computer games on his laptop. No, he wasn’t in as much pain as he’d expected but his arm was still swollen – it was about four times the size of the other, and looked more grossly swollen than mine had been. He’d had a swollen arm for about two months and had only had it checked out because his chiropractor had suggested it was unusual.

‘Don’t worry,’ I told him. ‘They’ll shoot you up with urokinase like me and you’ll be fine. They’ll put a catheter in your arm – or maybe your groin – it’s like a bike cable, about 25 cm long…’

‘Oh, too much information!’ he said.

girlyswot subterfuge

And to resort to subterfuge. I began to text as many of my friends as possible about my situation. I was particularly interested to find out if my medical friends could tell me anything about the necessity of the proposed rib operation. I had no intention of agreeing to surgery on the basis of what sounded like conjecture. I suspected that (unless there was something about the Garden of Eden story I didn't know) the operation had not always been the standard treatment for my condition. I wanted to find out the circumstances in which patients had done well without it - and also someone who could give me a second opinion. I felt as though I had been catapulted into some strange labyrinth and that I had to find the threads to lead me out. In the meantime I would wear the team down with my questions.

strange planet

Back in the Emergency Department, I was put on a heparin drip and sent away for a scan, which indicated there was a ‘high probability’ that I had a pulmonary embolism. I felt as though a vice was being slowly tightened on my chest, and I had to keep on catching my breath while talking. I was only allowed to leave my bed to go to the loo.

That evening, I was moved to a ward in a hospital block I'll call the Crimean Building, a towering edifice of concrete, decorated by decaying prefab tiles, peeling paint, mildewed ceilings with fans hanging from loose bolts, cheerless narrow corridors with brown mouldings, and austere shower rooms with heaters at coo-ee distance. Some of my friends were surprised to hear the building was still standing; they thought it had been bulldozed long ago. Indeed, the first thing I was told by the nurses on my arrival at the ward was that it was a shame I hadn't been admitted three months later, when the building was due to be demolished.

I was halfway through my vegemite toast next morning when a swarm of a dozen young men and one woman with clipboards appeared at the foot of my bed. A young man with the smooth good looks and forced bonhomie of a career politician stepped forward and introduced himself as the senior registrar for the vascular team before running through the names of the smiling young people. Dr Grant, as I'll call him, told me that I was on heparin, and that they planned to give me urokinase either that day (Friday) or the following Monday. He rattled off a list of possible complications (the only one of which I now remember was a ‘1 in 10,000 chance of a stroke’) then gave me some papers to sign.

‘And after that,’ he announced jovially, ‘we’ll see about removing your first rib.’

a virus and an aspirin

My left arm remained cool, bluish, leaden and slightly inflated, like that of a corpse. Once elevated, the swelling usually diminished, but the inside of my hand remained blue.

The following Sunday I noticed I was breathless and dizzy after carrying some bags of groceries home. Scared that a clot was still there and that a piece of it had flicked into my lungs, I asked my sister to take me back to the hospital that night.

When I arrived at Emergency, the triage nurse processed me promptly. After some basic tests had been run, a doctor came over to examine me where I was lying on trolley inside the department. His face looked pale and unlined in the dim lighting. He said there was nothing out of the ordinary in the observations they'd made so far and that he could not see much difference between my arms.

‘But this one’s bluer and more swollen than the other,’ my sister pointed out.

adam's rib

As I'm about to press the blogging pause button for a while as I gear up for going overseas, I thought I might run a bit of a serial here over the next week or so instead. The following series of posts is taken from a longish piece of creative non-fiction I wrote (probably the first piece, in fact) five years ago, following a serious blood clot and adverse hospital drama I experienced.  It's actually the anniversary of this episode about now; it's certainly quite bizarre to think I was in hospital five years ago with tubes coming out both my arms, whereas now I'm contemplating international travel.

I wrote this account within a month of leaving hospital; I sat outside my flat each day in the sun, leant against a brick wall and wrote this story longhand into a notebook from Woolies. It was based in part on notes I wrote in my filofax while in hospital, emails and other correspondence.  The original version was twice the length of what appears here. In the shorter version, I tried to stick to the basic narrative and get away from a lot of the repetitive detail and cogitations ('I felt this, I thought that', etc) in the original. Consequently, it may seem a little detached at times. (I also kinda hope my writing's improved since then.)

I used to rise to any occasion to tell this story; it was a great number for dinner parties.  It's a funny thing, but as time passes, the more reluctant I've become to tell it, partly because it just takes too long to tell in all its fine detail.  I also suspect there's a role that 'narrative therapy' plays in re-ordering one's world and re-gaining a sense of equilibrium. I've read that people who experience PTSD for long periods are unable to narrativise their trauma and tend to continue to experience it as a series of images, sensations and impressions, etc.

In posting this account, I wish to emphasise that it is a patient's perspective rather than an attempt to give an even-handed account of hospital life (tho lord knows, the patient is hardly in a position of power).  My story is also one in which things went wrong at a number of levels. And I had an unusual condition.  But all the same, I doubt some things should ever have happened. And the increasing passage of time shows that I was right to trust my instincts, stick to my guns and all those sorts of cliches.

All names of people and places have been changed in this account, but I'm a little nervous about posting it so I'll probably pull it in a couple of weeks, rather than leaving it round on the net.

Warning: if you don‘t like ‘things with needles’, this may not be the story for you. Mind you, if you were a patient, you wouldn’t have much choice.

Depressed

I wasn't going to blog today, but I'm depressed...I just discovered from yahoo news that Kylie has breast cancer!  (No need to provide a link for this news, I reckon.)  And that Roman Blanchett has been rushed to London for treatment of a minor burn...I'm afraid I found the Kylie thing more upsetting.  I feel like there's been almost too many reminders of mortality recently.  In fact, Kylie having breast cancer makes me feel about 75.

God, only the other day, Kylie's holey, golden hotpants were being memorialised in some museum of contemporary art somewhere.  And it hardly seems like any time since the days of Scott and Charlene.

Kylie is only 36.  But then, Princess Diana died when she was 36.  I had my own encounter with morbidity and mortality at the same age (and I'm right up there with Di & Kyles!)

Totally bizarre & irreverent thought: perhaps Jason Donovan will be able to give Kylie some bedside advice, based on his role in MDA.

In other bad news today:  I read that Princess Mary is the third most trusted Australian.

P.S. Discussing Kyles with a friend, she said, 'I found myself singing Kylie songs round the house today, then thought, fuck, why am I doing this?  There are lots women who end up with breast cancer.  At least Kylie's got the dosh to afford good treatment.'

Only too true -- found myself looking in wonder at Kylie's (parent's) stack in what looked like Toorak (on the teev).  Why do rich people buy such boring looking places (and think of all the cleaning and lawn-mowing, tho evidently not for the likes of them).

We both agreed, meanly, that drs would require a microscope to operate on Kylie.

The good news about the Kylie bombshell: it will take Princess Mary and her bump off the covers of the women's glossies for a while.

Oddspot: breast cancer was virtually unheard of in remote Aboriginal communities until they adopted elements of a western lifestyle.