Wandering Thoughts

November 1, 2015

Flattened

Filed under: Aortic Valves,Reactive Arthritis — terence @ 2:17 pm
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The seizure meant more medicine. Both to reduce the risk of another one, and to try and eliminate the spells of confusion I’ve been having ever since surgery. That one fully fledged seizure had the neurologists more inclined, even if still uncertain, to classify the episodes of confusion as a type of epilepsy.

And so I started adding anti-epileptics on top of Warfarin, Losartan, and Humira. First came Sodium Valproate, smooth purple pills in soft plastic foil packaging. I was so worried about the side effects—hallucinations, depression, strange behaviour—that, because Jo was travelling, I asked a colleague to call Jo if I seemed weird, and asked a friend to check in on me.

There were no side effects. Nothing. And that was the problem with Sodium Valproate. I didn’t have any more tonic-clonic seizures, but I’d only ever had one in the eight years since surgery, so they weren’t frequent events. And the spells of confusion, which were the best yardstick of treatment efficacy, kept trundling through my life as they always had.

And so I added Kepra, starting on a low dose and slowly increasing it. Kepra did something, perhaps: about the time I got to a therapeutic dose I went six weeks without any spells of confusion. This was at least twice as long as I’d ever gone before. Jo and I started to hope intensely. I would be able to drive again. Jo wouldn’t have to accompany me every surf. Life would be normal in its unusual kind of way. But then the spells came back.

So I kept upping the dose of Kepra, but with this came a mild lethargy, and although the spells were less frequent they were still quite frequent.

Next I started Tegretol, increasing the dose while I weaned myself off Sodium Valproate. And now I’m on the full dose, with the useless Sodium Valproate no longer in my pill box. As I type this I’ve been about three weeks (and carefully counting) without any confused spells. This is long enough for the medicine to be promising me, but not yet making any guarantees—I’ve been three weeks often enough before. And I now know that even six weeks doesn’t necessarily mean problem solved.

Tegretol hasn’t been easy either. It impedes the absorption of Warfarin, so I’m on an ever increasing dose of Warfarin, wondering if my liver can cope (although there’s no medical reason to think it can’t). Worse, Tegretol is flattening me, in a slightly sad sort of way. It makes it hard to find the energy. It makes chores feel like a chore. It makes it harder to believe in things in the way you need to believe. This isn’t insufferable, or impenetrable: after surfing I still glow; and happy conversations still bounce along. Reading still works, more or less. And if I try I can push back against the effect.

So, here I am, mostly hoping the Tegretol works, but part of me hoping it doesn’t. Because if it doesn’t I will wean myself off it as-fast-as-I-can.

Disclaimer 1: I realise things could be worse.

Disclaimer 2: My medical situation is my medical situation. Yours will be different. Make your choices on the basis of what medical professionals tell you, not what you read here.

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August 17, 2014

Seizure

I turned up just after 2am. I found my self sitting on a bed. Sitting on our bed. Someone – Jo – was standing next to me. There was a woman at the end of the hall dressed in blue and white. I’d never seen her before but there wasn’t enough of me there yet for this to be unusual. For it to be anything.

Jo was speaking to me.

Do you know what’s happening?

No.

My neck was aching. One of the joints in my back hurt too.

You’ve had a seizure.

I was with it enough now to think first – driving – and then: shit, we were going surfing this weekend.

There were two women at the end of the corridor now.

They’re from the ambulance. They’re going to take you to hospital. I’ll drive our car.

How long did the seizure last?

You were convulsing for about two minutes. That was 15 minutes ago. I need to get you dressed.

I’d wet myself.

I was walked out to the ambulance, and then lay there as they put a needle into my arm and hooked me up to something. One of the nurses had worked in Solomon Islands; Jo was talking to her about that. Then we were driving.

I don’t recall much of the drive. Being wheeled into hospital was odd and upside down, but from then I found my way to a normal quite quickly.

I lay in a bed in A & E. Jo sat with me. And I felt sore ­­– my joints must have crunched convulsing – and sort of sick. Although once I was allowed to eat I felt less ill.

And that was me discovering I had epilepsy. A month ago now.

Ever since open heart surgery I have had spells of something akin to confusion. Deja vu, and a rush of memories of things which never happened.

Several years ago in Canberra I went and saw a neurologist: a chubby puffed-up man who thought way too much of himself, who told me I was suffering nothing more than anxiety.

I’ve suffered anxiety, and these spells were nothing like it. But while they weren’t pleasant, I couldn’t see the point of doing anything else after the dead end of that medical ‘professional’.

And so I went on, hoping I wouldn’t have an episode while giving a seminar, and not enjoying the spells when they occurred, but usually they were gone within 15 minutes. And I could live with that.

Then finally I had the tonic clonic seizure. And here I am now, struggling with not being able to drive. And wondering whether I can safely surf. And worrying about side effects of sodium valproate, and whether it will interact with warfarin. But at the same time better for having a proper diagnosis.

Some lessons:

As philosopher Havi Carel wrote, when you are ill, how you are treated makes a big difference. I’m very lucky to have the support of my wife and family. It would be very hard to navigate all this on my own. Also, two weeks ago I had my first neurology appointment at one of Canberra’s public hospitals. The appointment lasted over an hour. The registrar was incredibly thorough, and the consultant was considered and decent. And they went out of their way to explain, and to answer our questions. Which helped a lot. According to the consultant, the seizures probably stem from something akin to a small stroke, which I must have had shortly after open heart surgery.

Some advice:

If you end up with a serious chronic illness, address the illness itself as best you can, but also prepare for, and manage, non-biological changes to your life. There’s a lot more to it than your physical symptoms. Your relationships may change. Your career may be harder to maintain. Your goals may have to shift. You can’t cure any of this as such, but being aware and managing it helps. And hopefully you, like me, will find plenty of space to be happy, even if it’s a struggle at times.

And don’t worry (although always get symptoms checked by a medical professional): seizures in the wake of open heart surgery appear to be rare, and heart problems as a consequence of Reactive Arthritis or Ankylosing Spondylitis are not common.

And then:

Sometime around dawn they discharged me from A & E, and Jo and I decided to take the weekend we already had planned. We watched Brazil beat Chile in the soccer, then drove to Braidwood where we had coffee and food, and then made our way down to the coast, where we lay and read on the beach, under the winter sun, watching the sparkling sea.

July 19, 2010

Lost

Filed under: Aortic Valves — terence @ 7:24 pm
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Yesterday, and it’s fine with a cool nor-westerly carrying bunches of cloud out towards the sea. I’ve spent most of the morning in bed and decide I want to get out and amongst that weather. The best option is Mount Ainslie; the track starts not far from our flat; it’s steep enough to be good exercise; and the view from the top will be sweet I figure – cloud patterns over the sprawling land.

About halfway up the track, and puffing heavily, I have one of my ‘memory spells’ – a sense of deja vu and then my memories aren’t my own. Or they are, but they’re not of things that happened. I think they come from dreams. It’s not an overpowering sensation: my conscious mind knows the memories aren’t real, even as my sub-conscious keeps sending them up out of the depths of wherever. It’s not an overpowering sensation: I can function while it’s happening – can hold down conversations. It’s not an overpowering sensation: but it’s troubling. Troubling to be deceived by my mind like that. Also, while the spell is occurring, my own real world memory becomes thoroughly patchy. I could hold a conversation with you, but I probably won’t remember what you said.

Generally, the spells have been less frequent over the last month or so, although they’d been particularly prevalent last week – a response to being tired. So I wasn’t happy to discover I was having one as I walked. But I kept walking, and waited to weather it out.

Except this spell didn’t go – or it went but then came back and went again. Waves of clarity and uncertainty which lasted for the next couple of hours. Only slowly ebbing away in the late afternoon.

No calamity. Like I said I could still function. But frightening at the time: what was happening? why were the rules of unwell being changed? would the spell ever stop? had I forgotten something important?

I don’t want to bang on about this side-effect of the surgery that saved my life. But it’s hard not to fixate on it. Memories, I’ve discovered, however, imperfect, are like maps. Tracing paths from where you were to where you are. And, in doing this, giving you a sense of where you’re going. Lose them and you’re  lost. Or that’s how it feels for me – for the conscious planning part of my brain – that struggles on in their intermittent absence.

And maybe that’s the heart of the problem. Of my worry. Simply that being lost is unnerving – especially when it’s within yourself.

Anyhow, I’m feeling much better today – albeit tired. Off home to rest.

May 3, 2010

Dreamt

Filed under: Aortic Valves — terence @ 3:34 pm
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“Nothing real can be threatened. Nothing unreal exists. Herein lies the peace of God.”

Years ago, in a new-age book, I read that quote. Like a lot of what I read in new age books, it sounded profound but never really made sense.

Now it sort of does, although I can’t imagine my understanding is the same as the author’s. I’ve written about my post-perfusion confusion before. Deja vu, dreams recalled, memory loss, and a feeling I could never describe other than to say it was unpleasant. The good news then was that the episodes were slowly becoming less frequent. By the time I finished work in February they’d almost stopped, I was untroubled by them as we prepared to move. And deeply relieved to be untroubled.

But no – on arrival in Australia they returned. On a frequency of one sometimes two a day.  I have no idea why they’re back, but they’re back. Slightly different, maybe milder, and as unpleasant as ever.

Anyhow, there’s nothing much to be said of this, other than that the quote at the beginning of this post makes sense to me now, in a personalised way. Having the recollection of dreams, or other things that never happened, exist in in the place of my memories is disturbing. Threatening. And absolutely unconducive to the peace of anything.

I really, really hope the episodes go away.

April 25, 2010

The Arthritis Diary (updated)

Filed under: Aortic Valves,Reactive Arthritis — terence @ 1:01 pm
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Feb 1999 – Catch dysentery in the Cape Verde Islands. Unpleasant but, as these things go, mild enough. So mild that I wait until I’m back in Portugal to see a doctor.

March 1999 – See a doctor in Figeira da Faz but, seeing as my stomach now seems settle, don’t both taking the antibiotics he prescribes.

March/April 1999 – Now back in London and my body starts doing very strange things. The baseball size knees being the most quantitatively disturbing. See a number of doctors before diagnosed correctly with Reactive Arthritis (ReA), but then receive excellent care. Have a frightening run in with what I think is Iritis but what the ophthalmologists decide is cold sore virus in my eyes. Iritis can damage your sight and my symptoms were textbook. It’s also a common complication of  ReA. Over this time the most inflamed joints are my knees and parts of my spine.

April 1999 – December 1999 – Taking nothing more than Ibuprofen (and a short course of antibiotics to clear the initial dysenteric infection; along with a couple of knee drains and steroid injections early on in the piece which only provide short term assistance) I slowly but surely get better. I notice that the rate of improvement increases as I reduce the Ibuprofen dose.

December 1999 – early 2002 – Effectively in remission, with only the mildest of symptoms. Able to travel to Greenland, trek in Patagonia and surf my socks off.

Early 2002 – a quick, two or three day, and relatively mild flare-up. Gone as quick as it came.

Mid 2002 – start to get more arthritic during the busy final month or so of my work. I’m also partying quite a lot and dealing with insomnia. No new infections though. The return, as is often the case with ReA is spontaneous – maybe triggered by lifestyle/fatigue. Worst joints – lower spine and knees.

Mid 2002 – Away for a week’s surf trip up the NSW north coast arthritis abates quickly but then returns upon return to Sydney and back to work.

Mid 2002 – I quit my job and go backpacking round Australia. At first the arthritis seems to be improving but then a long tramp around Mungo National park brings it back with a bang. Rightly or wrongly, and increasing pain, I continue my planned travels around Australia. Worst Joints – lower spine and feet. Knees now more or less fine.

Late 2002 – return to New Zealand. See a Rheumatologist at Hutt Hospital who proscribes Methotrexate. Frightened by he potential side effects of the drug, deterred by the lack of consultation around this decision, and not keen to admit my condition might be chronic, I don’t take the methotrexate. Instead I seek out another Rheumatologist who prescribes minocyline.

Early 2003 – Shortly after starting the minocycline begin a steady improvement. And start surfing again.

Early 2003 – Probably surfing too much in fact. I notice after long surfs the arthritis gets worse for a few days. Keep surfing though until…

About June 2003 – Relapse in the space of about an hour one evening. Literally I sit down to watch TV and then struggle shortly afterwards to get back up again. The arthritis had never fully gone away but now it was severe enough to stop me from surfing again and make life generally pretty difficult. Worst joints: feet and lower back.

June 2003 – September 2003 Rheumatologist adds clarithromycine (sorry I’m spelling the med names wrong) into the mix. Once again start getting better. Am surfing again by November.

December 2003 – Another relapse, this time overnight. Sometime around now try adding Cipro into the antibiotic mix -doesn’t help. Worst joints: back and feet. Particularly my plant-fasha (sorry also spelt wrong) muscle in the base of my right(?) foot. Spend time on crutches.

October 2004 (I think) – Start Sulphasalazine. Well enough to surf within a couple of months although definitely not rid of symptoms. I have to surf wearing a shoe to ease the pain in the base of my feet.

June or July 2005 – Another relapse – this time maybe actually the result of ear infections caught surfing. The worst relapse to date. Back on crutches, taking prednisone and close to being immobilised.

July 2005 – March 2006 – Some improvement but it is very slow. Definitely not well enough to surf. Struggle to hold down a 3 day a week job.

March 2006 – visit doctor and naturopath in Melbourne. They tell me to cut all grains but rice from my diet and also to eliminate dairy too. Prescribe different antibiotics.

October 2006 – I surf again. I can still remember how happy it felt to stand on that first wave at Titahi Bay. The naturopath and doctor’s advice/prescriptions seem to have worked. Certainly from March to October got much more quickly better than I had been.

October/November 2006 – Notice that I am very easily puffed surfing (and doing other exercise). Figure that I am just unfit.

December 2006 – surfing a lot.

December 2006 – November 2007 – Arthritis very close to being in remission. Am well enough to surf and hike (my feet are absolutely rid of inflammation – which is amazing). This period of remission is longer and stronger than all those preceding it other than the 1999-2002 remission. The only evidence of continuing disease is that if I surf too much I’m sore and inflamed for several days afterwards.

November 2007 – the doctor in Melbourne notices a funny pulse on my neck, sticks a stethoscope on me and informs me I have aortic regurgitation. Arthritis still fine. I’m worried about this and, on return to Wellington, hop in the queue to see the cardiologist at the local hospital, but I’m not that worried. My symptoms seem so mild (just a bit of breathlessness).

February 2008 (I think) – see cardiologist who informs me I’ll need open heart surgery to replace my aortic valve and ascending aorta.

May 2008 – cardiologist tells me I need to stop surfing. And that I must go easy on my heart. Arthritis still fine.

August 2008 – have surgery. Make a pretty good recovery. Worst lingering side-effects being to do with my memory.

November 2008 – Bang. Overnight. From being just a little stiff one day to unable to dress myself. Arthritis is back and I’m broken. No new infection.. No obvious cause. Maybe frustrations and stress at work plus a delayed response to the shock of surgery? Worst joints back as always; right knee; left hip; right ankle. The worst my arthritis has ever been.

November 2008 – May(ish) 2009 thanks first to Ibuprofen, panadol and tramadol, and then prednisone I manage to keep working somehow. Not a fund period of time. I try a large infusion of methlyprednisolone (spelt wrong of course). Helps but only for a few days.

May 2009 – finally take the plunge with Methotrexate. Something I should have done months earlier. It helps almost straight away and, in the absence of significant side-effects Rheumatologist increases dose to 25mg/week.

August 2009 – I surf again but it’s not like previous returns to the water. I’m very, very fragile. And the improvement doesn’t continue.

August 2009 – December 2009 I’m just well enough to surf and that’s about as good as I get, with fluctuations as described in this blog.

December 2009 – doctor/naturopath team in Melbourne (who I’ve still been seeing but who haven’t been able to repeat the magic of 2007) advise me that I’m actually a lot better and can try reducing my methotrexate dose. This seems like very bad advice but, out of interest, and because 25 mg a week is starting to knock me around a bit I reduce my does to 20mg (with the consent of my Rheumatologist in Wellington). To my surprise I seem to get a little bit better.

Feb 2009 – Quit my job. Flat tack busy preparing for shift to Australia. Manage to longboard (surf) quite a bit. I’m still very fragile but doing better than on previous efforts. Maybe only because I’m riding easier boards though.

March 2010 – To Australia. Maybe a little better here. Have tried lowering Methotrexate to 15mg per week. So far I haven’t gotten any worse for it. Will see what happens over next month and a bit. If still no worse will try lowering again and if this doesn’t cause problems will return to people in Melbourne for another try. Suffering from vertigo a bit and still struggling with post-surgery memory issues. On the other hand: enjoying longboarding down the South Coast.

January 25, 2010

Vertigo

Filed under: Aortic Valves,Reactive Arthritis — terence @ 8:05 pm
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Sometime petty early Sunday morning I rolled over in bed. And I kept rolling: welcome back vertigo.

I’ve had vertigo before. A very few times before surgery and more regularly since. There was week about this time last year when I lolled around walking like I was on the deck of a ship at sea. But yesterday’s encounter was by far the worst. If I lay on my side and didn’t move I felt ok. But if I sat up or, heaven forbid, tried to stand the room swum and made me nauseous real quick.

Jo’s away and I couldn’t even think about driving, so the medevac involved my father coming to collect me and an embarrassing retreat back to my parents’. With a stop on the way to throw up and another one at the after hours medical centre in Lower Hutt.

Today I’m feeling a fair bit better; either because the Stematol is working or the vertigo passing. More than anything else though I really want a break. A year, a few months even, with less pain, no heart worries and no new symptoms to try and work my life around. I know I shouldn’t moan as things could be much, much worse but this evening I’m just a little tired of it all.

December 6, 2009

Questions

Filed under: Aortic Valves,Reactive Arthritis — terence @ 12:31 pm
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Sometimes life with a chronic disease feels as much as anything else like being attacked by a flock of questions.

Is the problem with my liver function going to get worse?

If it does, will I have to stop the methotrexate?

If I stop the methotrexate will I be able to get TNF inhibitors?

If I go on TNF inhibitors will I be able to travel overseas?

Does the fact I feel sore this week, mean the methotrexate’s stopping working?

Or maybe it’s just a bad week and maybe I could lower the methotrexate dose and that would help with my liver?

Do the people I see in Australia know what they’re talking about? Does my rheumatologist?

Could I find a new antibiotic to try? Could I find a doctor who would prescribe it to me?

Is work making my arthritis worse?

Would it help if I eliminated all starch from my diet? If I did that, what would I eat?

Why do I still get breathless?

Is the ongoing inflammation damaging my ascending aorta? If it is, would I survive surgery to have it replaced?

Questions.

September 27, 2009

Windows

Filed under: Aortic Valves,Reactive Arthritis,Surfing — terence @ 6:55 pm
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I woke from a God-awful dream. For a little while I just lay there, letting it melt away; leaving the place where anxieties shape reality and returning to the world where they only reflect it. The Southerly was blowing. Listening, I started to go over the plan, born of a mid-week weather map and argued ever since. A Tasman low, a west swell and a reef tucked in out of the wind. My doubts moved across the wind (too strong?), the swell (already gone?) the crowds (everyone knew), before settling on the real issue – my body.

I’d tried surfing three times since surgery and since the arthritis came back. Each effort a mixture of failure and success. In the water, (in the water!), but in aching joints, meaning I could only just get up, slow and awkward, often as not too late to my feet.  This time though, I figured I had an almost solution, I’d started taking Methotrexate on Wednesdays, so as that the full force of the drug would be felt over the weekend. The difference wasn’t huge but it might be the enough to allow me to surf properly.

“Get up and give it a try,” I told myself.

Written now, after the fact, it seems simple enough. Give it a try, and if it doesn’t work, oh well. But as I drove along the weaving road the sea, with nervous internal chatter I managed to pull the problem apart and look at it a hundred ways.

At the ocean’s edge, my doubts were answered one at a time. The swell: small but a perfect size for me. The crowd, mostly just guys milling around in the car-park complaining that the swell wasn’t bigger. And the wind, strong, but ok.

I paddled out on my own, in the channel that ran between the point and the reef itself. Out the back, heart hammering and breathless as ever, I waited for a wave. Behind me, at the head of the valley that tilted down into the bay, a giant white windmill spun, turning the Southerly into electricity with patient sweeps of circling arms. Beyond it, the hurrying sky carried clouds and blue off into the north.

Eventually, a wave came my way and I set my own arms circling, trying to build speed to tap into the steepening slope. Paddling, paddling and then in an instant I had it and reflex took over. To my feet and this time, in time. Slow. Sore. But fast enough and free enough to have me up and off down the line. The swell steepened and walled up and I sped along the face, around the bend of the reef and into the bay, where I coasted over the shoulder and into deeper water.

Hah!

Behind me, the windmill kept spiralling away. And out to sea another set of waves lifted the shimmering water, and I took protesting arms and constricted lungs and paddled out the back just as fast as I could. So I could catch another. So I could catch as many as possible. Making the most of the window I had.

August 27, 2009

Don’t Worry

Filed under: Aortic Valves,Reactive Arthritis — terence @ 7:44 pm

To the person who found my blog by googling “reiter’s syndrome will it kill me”. If you’re reading this, and if you’ve read my blog – do not worry. Complications of reactive arthritis as severe as those I have experienced are very, very rare.

August 23, 2009

A Year and two days

Filed under: Aortic Valves,Reactive Arthritis,Surfing — terence @ 9:08 pm

Yesterday, a year and two days after open heart surgery, on a day when the nor’easter spilled out over the sea and a small South West groundswell curled over the sandbanks, my wife, her friend and I went for a surf.

With the white V’s of snow covered mountains behind us, and the sun dodging licks of high cloud, we waded into the sea. I managed to pilot my big, blue learners’ board beyond the whitewater. Out back I waited until a small clean right hander rolled my way. As the wave picked me up I attempted to jump to my feet – back, knees and ankle all protesting the contortion. Ankle especially – the sharp shock of pain cleaving through it almost toppled me. But it didn’t. And the friendly little swell forgave my clumsy start, leaving me time to turn down the line. I swept across a couple of sections adjusting, trimming, turning – sailing – sploshing down eventually in the shallows.

It was a very shaky return, each wave hurt my ankle more, my heart felt funny, and I struggled for breath worse than I ever did before surgery. And, when I paddled down the beach to try and surf some of the steeper lefts, I failed, more or less.

But I made it. Nothing so certain as a come back, my body feels too fragile to try it again for a while. But I rode a few waves. I surfed again. And that was pretty sweet.

February 10, 2009

Illness

Filed under: Aortic Valves,Reactive Arthritis — terence @ 6:50 pm
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Jeremy at Scoop Review of Books has very kindly published my review of Havi Carel’s book Illness on the SRB website. It’s also below.

As an alternative to the review you could read this article by Carel in the Independent.

Illness – Havi Carel

“Empty,” the ancient Greek philosopher Epicurus once wrote, “is the argument…by which no human suffering is healed; for just as there is no benefit in medicine that does not drive out bodily diseases, so there is no benefit in philosophy if it does not drive out the suffering of the soul”.

Havi Carel understands this better than most. A philosophy lecturer at the University of the West of England she was diagnosed in 2006 with lymphangioleiomyomatosis (LAM), a rare, degenerative, terminal illness present most acutely in the lungs. A transplant might extend the span of her years, but donors are scarce, and even then it only buys time. In the end, either way, short of a miracle she can expect the steady loss of lung capacity and, eventually, death. Lymphangioleiomyomatosis is an illness for which medical science has no cure.

Illness is Carel’s attempt, in the face of this, to muster the tools of her own trade in search of a cure of sorts. Philosophy may not be able to arrest the cell over-growth and cysts in her airways, but the story of an illness is never a purely physical tale. How we think about illness and, equally importantly, how society around us thinks about it, matters. And it is to this that Carel directs her attention.

Philosophically speaking, medical science has been anchored in a form of naturalism that describes and deciphers diseases as physical processes. To this way of thinking arthritis, for example, is an illness of the joints (and depending on the type possibly other body parts). It can be described in terms of physical symptoms (pain, swelling…), causes (in the case of the arthritis I suffer from complex microbiological interactions between a trigger organism and my immune system) and treatments (anything from Ibuprofen to immunosuppressants and steroids). In a naturalistic, sense it is an illness of physical cause and effect which begins and ends with the body.

There is much to be said for such an approach to thinking about ill-health. Built upon it is an understanding of disease that has rid the world of smallpox and nearly rid it of polio, and which has transformed the Black Death from a civilisation shattering plague to something that can be treated with antibiotics. Medical science based on naturalistic thinking has lengthened life and improved lives. Yet, as Carel explains, it remains insufficient.

Insufficient because, for the sufferer, illness is much more than its physical symptoms alone. In a series of examples from her own life that are both moving and illuminating Carel illustrates this. Illness has reshaped the geography of the world she lives within: hills she used to cycle up become insurmountable as her lung capacity diminishes. Stairs are now climbed as hills once were. Illness has reshaped her sociology: unsure how to react, friends avoid her; strangers in the street laugh cruelly at her oxygen tubes; the staff at medical facilities have a huge impact on how she feels through acts as simple as offering a warm, caring greeting (or not). Most of all, illness has reshaped her self: it has driven a wedge between her mind and body. Actions once automatic and taken for granted have become difficult or impossible. Her mind struggles to keep up with the changes; at night she dreams of running but will never run again.

Using these examples Carel contends that we can better tackle illness by augmenting naturalism with phenomenology. Phenomenology is an approach to philosophy which seeks to understand life as it is experienced by those living it. In the case of illness, phenomenology emphases the importance of understanding illness as it is experienced by those who are ill. The physical processes of disease will, of course, play an important role in such experiences (and it’s important to note that Carel isn’t suggesting that we discard naturalistic understandings of health, but rather that we augment them) but so will factors stemming from outside one’s body.

Influenced phenomenology, medical professionals and society more generally would seek to treat the sick not just through medicine but also through the way we treat them; how we interact with them in our day-to-day lives, how we shape the world to ensure that their physical limitations do not lead to their exclusion, how we provide them with space to adapt to their newly acquired circumstances. It is easy to sympathise with someone who is sick; it’s a lot harder, unless you’ve been there yourself, to empathise, but if we’re willing to try and at least understand how being ill makes people feel, and how our interactions with those who are ill make them feel, we will do a much better job of helping them feel better.

Of course, these arguments aren’t entirely novel. They have been advanced by disability and illness advocates for some time and to varying degrees have already impacted on the medical profession and society at large. But, as Carel’s own experiences show, there is still much to be done. And Illness’s strength is to place these arguments into a coherent whole which draws a line all the way from the philosopher to the patient.

In the book’s later chapters Carel shifts her gaze away from society and inwards in an attempt to see if phenomenology has answers to two personal questions that loom large for the seriously or terminally ill: how to face one’s fear of death. and how to approach the rest of one’s life.

On the issue of death Carel makes use of two guides – Epicurus and Heidegger – who at first glance appear to have beliefs about mortality so profoundly at odds with each other as to be irreconcilable. On one hand, Epicurus’ advice for those who fear death is simple: don’t. Get over it. Rationally, he argued, there is nothing to fear in death as being dead is not something we’ll ever experience. We’re right to fear suffering, Epicurus believes, but in death we won’t suffer for the simple reason that we won’t be there. Heidegger, on the other hand, argues that all human existence is “being towards death” and as such there is no escaping the presence of death in our lives. Indeed, life can only properly be lived once we understand it as finite.

Epicurus advises us not to worry about death, Heidegger would have us constantly reminded of it – Carel tries to negotiate between the two. With Epicurus she agrees that there is little to be gained by worrying about death itself. But, at the same time, she also agrees with Heidegger that we do have to understand the presence and inevitability of death in our lives, as it inescapably shapes them. What is needed is not to come to terms with death itself but rather the fact that our lives are finite and then to learn to live them in light of this.

Following from this, Carel has two pieces of advice for the seriously ill wondering how to live the rest of their lives. First, adapt to the constraints of your illness and do so in a manner that enables you to best do those things you are still able and want to do. (Carel has a motorised bike, which takes her along the routes she used to cycle; she no longer goes to the gym but still attends yoga). Second, learn to live in the present – don’t let the quality of the life you have now be dampened by fears of the future nor yearning for those things which you are no longer able to do.

Once again, this advice won’t necessarily be news to some readers. Similar suggestions can be found in any number of books written in the ‘self help based loosely on Eastern philosophy’ genre. But what is interesting in Illness is to see Carel teasing such conclusions out of Western philosophy. Illness also benefits from a no bullshit approach to its arguments: they’re all the more convincing for being constructed succinctly and logically, and without wide-eyed appeals to things that can’t be true or can’t be known.

One potential criticism of Carel’s advice on how to deal with the personal challenges of life and death when ill is that it’s all much easier said than done. Of course, just because something is difficult doesn’t mean that it’s impossible, and Carel’s own life as detailed in the book shows how much can be achieved. But if you can find such a work, Illness would be well complimented by a similarly intellectually rigorous book that discussed techniques for coming to terms with death and ill health in greater detail.

I’m not a philosopher so ultimately I can’t vouch for the strength of Carel’s arguments on philosophical grounds (although I can attest to the accessibility of her writing to those who aren’t philosophically trained). I do, however, have some experience with illness. I read Carel’s book during a year in which I underwent open heart surgery to replace a damaged aortic valve and part of my ascending aorta. I also had to deal with a severe relapse of the reactive arthritis that I suffer from (and which caused my heart problems in the first place). While neither of these events are of the magnitude of a diagnosis of LAM, they certainly left me with plenty of reasons to dwell on death and being unwell. It was only a relatively minor risk, but the chance of dying during surgery was something I couldn’t dodge in the lead up to the operation. And, courtesy of the arthritis, I know all about the way illness changes one’s geography and the relationship with one’s body – there are days when my toes seem like a long way away, let alone the hill my wife and used to walk up regularly for our evening exercise. So for me Illness had a particular personal resonance. But it’s also a book I would recommend for anyone – healthy and non-philosophically inclined included – because inevitably, directly or indirectly, sooner or later, the way you yourself and society around you thinks about illness will have a major impact on your life. Think about it.

February 4, 2009

Decisions, decisions…

Filed under: Aortic Valves,Reactive Arthritis — terence @ 6:38 pm
Tags: ,

It’s been almost three months since the relapse. And question of the moment is, “am I getting better?”

I have to be getting better. I can’t afford for the arthritis to last too long. I can’t risk more damage round my heart.

And so, if my current treatment regime of diet and antibiotics isn’t working I need to try an alternative approach. This will mean a heftier set of side-effects, which I’d rather avoid. I’d rather avoid an even further broken heart too, though.

Am I getting better?

I am definitely better than when the relapse first hit. Mostly I can get by without crutches. Which counts as an improvement as I’m no longer taking Prednisone, Ibuprofen or Panamax.

But am I still improving? Because I’m not well enough – I’m still severely arthritic.

Am I still improving?

I don’t know.

It’s the questions you can’t answer that keep coming back – of course.

January 21, 2009

Post Perfusion Confusion

Filed under: Aortic Valves — terence @ 8:10 pm
Tags: ,

Yuck.

I keep meaning to write about this side-effect of surgery but never do. When it’s happening I’d rather not write; when it’s not, I’d rather not think about it.

Anyhow, just twice in my life before surgery, many years apart, I had a strange and distressing thing happen to me. In the middle of two otherwise normal days I was king hit by a feeling of déjà vu and then all of a sudden, unbidden, memories of dreams followed, crowding into my head. (I don’t know how I know they were memories of dreams. I’m not even 100% sure that they were, but that’s what they seemed like.) As this was happening my short term memory evaporated. Oddly enough, this didn’t render me entirely, helpless; I could still function from moment to moment, I just had to struggle like heck to remember what happened the moment before (beleive it or not I gave a lecture at the tail end of one of these events). Anyhow, after an hour or so the memory loss would ease away and I’d feel shaken up but normal.

The same sensation was there at the beginning of my post surgery memory loss. Except this time my short term memory was muddled for much longer and only slowly returned. As my mother and I rediscovered, memory loss after open heart surgery is pretty normal and normally transient. And my memory did slowly return. So the only thing unusual in my case was the déjà vu and dreams that came at the beginning of it.

Hhhmmmm…well not quite the only thing. Ever since then, at the rate of about one a day, I’ve continued to have very minor memory loss episodes. The routine is one I’m now familiar with: a sense of déjà vu (or sometimes just funny thinking), then the sense of dreams returning, then my memory goes. Accompanying this usually is a sensation which I’m never going to be able to describe to you – simply because it’s unusual beyond the grasp of metaphors. It’s almost like a taste or a smell – an unpleasant one – being sensed in a part of my brain which senses neither taste nor smell. It’s distinct and does definitely feel like a sense (i.e. taste, smell, etc), just no normal one. What ever it is, to be honest I hate it.

The good news though is that the memory loss that follows is very short and mild (it’s a nuisance in meetings mind you). And through out I’m compos mentis enough to continue functioning and conversing and the like. A minute or so later I’m okish again.

Anyhow, the even better news is that these episodes seem to becoming fewer and fainter. But I’d be lying if I said I didn’t find them disconcerting and discomforting.

January 17, 2009

Not Bullet Proof

Filed under: Aortic Valves — terence @ 10:06 am

Prior to surgery I was lucky enough to have the chance to speak to a couple of people who had been through similar procedures. One of them, a lecturer I knew through work, said something that didn’t really make sense at the time:

Some people suffer from depression after surgery. I didn’t, but it was hard not to feel somewhat shaken up. You realise that you’re not bulletproof after all

‘Not bulletproof?’ I thought. ‘No worries about that. I’m two weeks away from open heart surgery. I’m aware how mortal I am’.

I understand what he meant now, though.

If I stop to think about what happened to me while I was under the anesthetic, and how much I rely on the tiny piece of ticking titanium, the Dacron sheath above it and the warfarin, I feel very very shaky and fragile about it all.

I’ve never felt bullet-proof but I am so much more aware now, I think, of all the bullets that have to be dodged in my quest to stay well.

October 13, 2008

Two!

I’m no fan of blood tests.

It’s not a rational thing. I know they won’t hurt. I know the needle is tiny. And I know I need to have them – both to monitor the progress of my arthritis and to make sure that the Warfarin has my blood clotting rates within a safe range.

I know all this.

But none of it can shake that feeling. The suspicion that the thirsty, nasty, little needle-sword is really up to no good.

So why then was so I happy this morning despite discovering that I got the wrong blood tests done last week? After all, wouldn’t this just mean that I had go back to the bleeding room again?

It did, but the mix up which took place was that I got my arthritis tests done instead of my INR (blood clotting). It’s my blood clotting that I need to monitor regularly and frequently at present, while I wasn’t planning to have my inflammatory markers tested for a few more weeks.

And so, had the mix up not occurred, I wouldn’t have learned this morning that my CRP is currently two.

Yes, people, you read that correctly – two. One more than one and so damn normal it makes Karori look edgy (normal range for CRP is 1-7). The last time I got tested my CRP was in the high forties which, we hoped at the time, simply reflected the shock of surgery. We worried though that it might be a sign that my arthritis was returning in the wake of the trauma that my body had just been through.

In the land of chronic illness there is little that can be said for certain and without crossed fingers. But learning that my CRP is normal is good news – it certainly seems much less likely now that I will be revisited by bad arthritis any time soon.

[applause]

October 9, 2008

What makes me tick…

It was always going to happen and yesterday it did.

In a quiet meeting room, something was distracting my colleague, eventually she told me what.

“That watch of your is loud isn’t it?”

It wasn’t my watch.

Not all artificial aortic valves make a noise. Mine was silent for the first few days but overnight a couple of days after surgery that changed – to the consternation of my surgeon.

Anyhow, now I tick – like Peter Pan’s alligator. Like an over-loud wristwatch. Like a time bomb in a movie.

Like a turning car; driving today I caught myself checking my indicators, mistaking my valve for the tap they make when on.

The good news is that it is amazing how quickly I’ve gotten used to the sound.

I am thinking, though, that it might lead to some interesting times in airports…

September 27, 2008

Warfarin Humour

One of the consequences of my new artificial valve is that I will have to take Warfarin for the rest of my life. With all that foreign material now so near my heart I run the risk of blood clots forming. Clots which could lead to a stroke or something similarly nasty. So I take Warfarin – it’s an anti coagulant, which means that it slows my blood’s clotting, and that reduces the risk.

The side effect though, is that blood that clots less readily also bleeds more heavily. And it’s harder to get the bleeding to stop.

Now I’ve never been the most accurate shaver, nor the most coordinated of men. Like a raft in rapids my traverse of our flat involves swerves, stumbles, bangs and bumps.

Aware of this, and wondering what it might all mean for a man taking something to stop his bleeding from stopping, I found myself in my doctor’s surgery a couple of weeks ago. Interrogating him about Warfarin and what would happen if I cut myself.

“Warfarin,” his sentences are always rapid-fire, smart and thorough, “slows the speed that your blood clots but, so long as your INR is in the target range, your blood will still clot just fine. Slower but fine.”

“So if I cut myself shaving or surfing…”

“…You’ll be ok. Just make sure that you stem the bleeding if you need to.” He must be used to my worrying nature by now but, if he is, he never shows it.

“So what do I need to worry about?”

“Well I’d definitely advise you not to get into any serious car crashes…”

He paused, a hint of a smile began to curve his face.

“…but then again, I give that advice to all my patients.”

==

Ok – so I’m aware that footnotes kill jokes but I do feel the need to add two things:

1. That’s not quite how the conversation played out but, between the two of us, we did discover that punchline.

2. Please, I’m no medical professional, and this is just my memories shaped into a blog post – if you are taking Warfarin always get your own specialist advice and follow it.  An excellent resource (although still no substitute for professional advice) is Valve Replacement Forum’s anti-coagulation section:

http://valvereplacement.com/forums/forumdisplay.php?f=5

September 15, 2008

The Month So Far

Filed under: Aortic Valves,Reactive Arthritis — terence @ 12:56 pm
Tags: ,

“Here we go. Think of something pleasant.”

I closed my eyes and pictured myself riding waves – skimming across the glassy surface of the sea. Only for a moment though, then darkness crowded in, overwhelming first the periphery of my imagination and then the rest of my thoughts.

An instant later, or so it seemed, I was at work. Labouring on a never quite achievable task in the jumbled office space of a dream.

I did not, I think, dream for long before something else caught my attention – sound. Talk and the noises of the intensive care unit pulled me into the waking world, where at least 8 hours had elapsed.  I was aware, then unaware, lapsing back into sleep, then waking again for sometime before things steadied. People arrived – my parents and wife. I tried to scrawl a message on a piece of paper. I fell back to sleep – letters and words never quite formed. I woke up again and had the intubation pulled out of me. I can’t remember what my first words were but, drugged and happy to be alive, I was jubilant in the gently clearing fog. I gave the thumbs up to my parents, to my wife, to the semi-comatose complete stranger in the bed opposite me. As I found my voice, I cracked jokes and spoke to my sister on the phone.

For someone who’d just spent seven hours in surgery (four of them on the heart lung machine) and who had his aortic valve and a long chunk of his ascending arota replaced, I felt remarkably chirpy.

Inevitably, this didn’t last. My first night in ICU was horrid. Minutes dragged past like hours. I ached and couldn’t get comfortable, let alone sleep. The nurses were wonderful though. Kind. Helpful. Patient (I am, as my wife can attest, an utter wimp when I’m ill). One of them mixed me some diluted fruit juice. I don’t think I can even begin to tell you how nice this tasted.

After that first night things got steadily better. Winter sun spilled in through the windows of my ICU ward and I lapped it up. I stared at pictures in the Surfer’s Journal and, starting with captions, slowly found the strength to read.

After two days I moved back into the ward, which was to be my home for the next three. My reading skills advanced so that I could read magazine articles and a children’s history of Great Britain that my mother dug out of an old bookshelf. Friends came to visit and I started teetering along hospital corridors under my own steam.

I was released from hospital two days early only to return home to my most ill 48 hours since surgery. The first day I spent vomiting, on the second my memory collapsed. It’s slowly returning, but for the last few weeks I’ve really struggled to recall my immediate past. Other than that, recuperation so far has been pretty kind. My energy levels are low, and now I have a cold. Sometimes my newly ticking aorta keeps me awake at night and my upper spine aches. But I am getting better. And endlessly relieved to have surgery behind me.

Update: my wife informs me that I didn’t vomit all day; just once, after eating. Well it felt like I vomited all day. See, I told you I was a wimp when ill.

August 31, 2008

Life as a goldfish

Filed under: Aortic Valves,Reactive Arthritis — terence @ 1:42 pm
Tags: ,

Terence: “Mum read through the list of common side affects of surgery today. Apparently, temporary memory loss is quite normal. Boy is that a relief to hear.”

Jo: pained look

Terence: “Oh, we’ve had this conversation before, haven’t we?”

Jo: sustains look

Terence: “And you’ve read that booklet before too?”

Jo: “Yip”.

So, I’m recovering fine so far, but very forgetful. It’s getting better though – I’ll try and post an update later in the week. Thanks to those of you who’ve emailed or posted comments

August 21, 2008

Medical notes, 2023 hours, 21 Aug 2008

Filed under: Aortic Valves — terence @ 8:18 pm
Tags: , ,

It is only 8pm at night and I am struggling to keep my eyes open. But that is nothing. Terence was having problems with his lids at about 3pm this afternoon. All pretty normal for someone who has experienced one of medical science’s many wonders – the replacement of part of your heart?

For those of you who regularly read Terence’s blog, you will know that yesterday he was scheduled for aortic valve replacement +/- replacement of ascending aorta. And you will know many of the details around it. I’ll let him fill you in fully, in his own eloquent and articulate way, in his own time. But for now, he has asked me to give you a brief update.

After seven hours of surgery Terence emerged with a new valve and a new portion of his ascending aorta. Luckily, the surgeon was able to replace the ascending section without having to put Terence into full circulatory arrest. What a relief that was! By this time last night, he was awake and cracking jokes.

He continues to do well today, including beginning to sleep properly (not the hazy, half-sleep where you drift off into a misty underworld only to jolt awake every few moments to some worrisome sensation or noise). Tomorrow he will be heading out of ICU, back to his own room.

In the meantime, I am off to sink into my own deep sleep. Many thanks to those of you who have sent messages and been so supportive.

August 16, 2008

Things I Wanna do After Surgery

Re-read Comet in Moominland.

August 7, 2008

Update, a date, and gratuitous surfing

Ok, PET scan results are in and there doesn’t seem to be any active inflammation near my heart. So, barring the unexpected, it’s full steam ahead for the 20th of August for surgery.

The PET scan seemed to indicate that my aorta is less dilated than it appeared, too. So I’m hopeful – though no one can be sure until the actual surgery starts – that I may only need the valve replacement.

The only actual ‘bad news’ as such from today’s trip to the surgeon is that my previous understanding of the risks involved in the surgery was a little on the positive side. In reality it’s more like approximately 1% risk of death for simple valve replacement, 5% for valve and lower root, and 10% for valve and arch up to vicinity of arch.

[Warning, if you are reading this and in a similar situation as me, these numbers are not exact – they are just my surgeon’s educated guesses based on my own particular set of circumstances. You need to ask your own surgeon.]

So there we go.

Now, time for the surfing bit.

July 29, 2008

Radioactive Blogging

In the early hours of this morning, on the edge of an industrial estate, amongst the worn-out outer suburbs of Melbourne a mule stood waiting, shrouded in drizzle; his leather jacket barely keeping him warm in the pre-dawn chill. Behind him a gate opened and a man wearing a lab coat walked out to meet him.

“You are the man for the Wellington job”, his accent was foreign but unplaceable.
“Yes”
“You understand this is radioactive”
“Yes”
“So be careful, we need for him to receive the full dose”.
“Yes”
“Now get to the airport!”

On the other side of the Tasman at the other end of the day, the delivery found its destination – me. Inside a bare concrete cell that someone had once tried to cheer up with pictures from an old calendar, I lay helpless on a bed as another man with another unplaceable accent injected me with the contents from the flask: radioactive sugar. There was nowhere to run. A stern nurse watched from the door. Her accent suggested she was from the East – maybe Seatoun.

Such are the wonders of medical technology. In Wellington we have a PET scanner (at Wakefield hospital). This machine may tell my surgeon whether there is active inflammation around my aorta. And so today I had my scan. They can’t make the radioactive sugar needed for the scan (or at least my scan) in New Zealand though. So it has to be brewed up in Melbourne and flown across the Tasman. All this has to be done in a hurry as the radioactive sugar has a very short half-life.

As for the Pet Scan, it was fine – obviously there were no stern people with unplaceable accents (and the calendar pictures on the wall really weren’t that old). And I only wanted to run ’cause needles still scare the corpuscles out of me.

Pet Scans are way easier than angiograms, more like MRIs in the big scheme of things, although there was the radioactive sugar and then another injection of a radioactive contrast (the same warm flush I experienced during the angiogram – I’m actually quite starting to enjoy the sensation.)

Anyhow, the main point of this post is to gloat: I’m still radioactive. Which, surely makes this New Zealand’s first ever radioactive blog post.

First.

Results in a few days.

July 27, 2008

Update

Here’s the run down.

There is no question that my aortic valve needs to be replaced. And there is no question that sooner rather than later would be preferable.

The two questions remaining are:

1. Is there active inflammation in the area at present.

and

2. Will my ascending aorta need to be replaced.

Active inflammation is an issue because actively inflamed tissue is harder to operate on.

Click here to read more…

June 22, 2008

She’ll be Right

Filed under: Aortic Valves,Reactive Arthritis — terence @ 12:27 pm
Tags: ,

They call him the Professor, although he’s not an academic as far as I’m aware. In the world of Wellington surfing even something as simple as the ability to read a weather map can garner you a reputation for bookishness and a moniker to match.

He’s a slightly portly, balding middle aged man who rides a boogie board and the first time we met we didn’t get off to a great start. We were surfing my regular spot when a wave came through. In all fairness it was probably his, but I hadn’t had a wave for a while so I tried to nab it off him. I was the regular, I figured it was mine. He figured it was his. And quite some grumpiness and nasty stares ensued.

Did I ever tell you that I can be a dork in the surf?

It could have been the beginning of an ongoing enmity – the sort that spoils numerous surfs – but the ocean had other plans for us. A few days later the two of us ended up surfing alone in very good waves at another nearby spot. Now I’m a dork but I’m not that much of one. Neither was he and, rather than wreck the best surf we were both going to have in a while pretending not to notice each other, to our credit we both did the sensible thing. We smiled and talked.

And since then, we’ve done our best to be cordial in and amongst the desperately scare resource that is good Wellington waves.

Sometime last year I was driving to my favourite local spot, when I saw him walking along the road. The last section of that drive is on private property and he took the “No Driving Beyond This Point” signs seriously. No one else did. I stopped and offered him a lift.

“Sure. Thanks”
“Looks like that wind’s swung round to the north”
“Yeah, real clean. I think it was westerly earlier so we’ve got lucky”
“Swells a bit small though.”
“But hey”
“There’s waves.”

By that stage we’d parked the car and were walking to the beach. And I thought I’d broaden the discussion. “So, how’s things been otherwise”, I asked.

“Oh, not so good, I’ve been diagnosed with cancer. I start chemo next week”
“Sh#t. That’s not good. What’s the prognosis?”
“There’s about an 80% survival rate.”

In my defense, it wasn’t the sort of conversation I was planning on having that afternoon. And, really, I’m much wiser if I have a chance to jot down a few speech notes ahead of time. So my reply was pretty much stock standard.

“Oh well. 80 percent’s pretty good. She be fine I’m sure mate.”

At 80% the odds are in your favour. They’re even better at 95%. And better still at 99%.

And it’s these latter two numbers that are following me round at present. For someone young and fit like myself the risk of dieing in a simple aortic valve-replacement operation is probably under one in one hundred. If my aortic root needs to be replaced it’s more like 5 in 100. The risk of a stroke or some sort of brain damage, or other unpleasant complications, is somewhat higher but the numbers are still on my side.

Which is good. But not good enough to stop me from feeling frightened. When it’s you contemplating lying on the operating table, even a small risk of disaster starts to feel uncomfortably large.

Hhhhmmm…so what was my point? Oh, yeah, I figured I wanted to blog about open heart surgery honestly. And being honest – I have to admit I worry. And I suspect that, over the coming weeks, my ongoing battle with this worry will be unavoidable. Something I need to get on top of. And I imagine this is the case for most people in my situation.

And my other point: being on the other end of those stats now, I’m pretty sure that my “she’ll be right mate” response to the Professor wasn’t the right one.” I’ve had people say the same to me, and I really appreciate them trying to be reassuring, but I think if I were in the same situation again I’d say something like “oh, how do you feel about that?”

And maybe I would have, that afternoon, with the Professor, if given more time. But right at that moment a particularly good wave came through. And we were both racing to get into our wetsuits and out into the water before the sun started to set behind the Kaikouras.

June 15, 2008

The Butterfly Effect

Filed under: Aortic Valves,Reactive Arthritis — terence @ 12:29 pm
Tags: ,

If a butterfly hadn’t flapped its wings on a warm autumn morning somewhere in New South Wales, then that small low pressure system floating in the Tasman might have never picked up extra water.

And if it hadn’t picked up the water, maybe it wouldn’t have rained so hard as it crossed the lower North Island.

And if it hadn’t rained so hard. I mightn’t have driven my car slushing over the melted gravel roads to a river mouth in southern Wairarapa hoping to catch waves at a spot that never breaks.

And if I hadn’t found those waves, I might never have surfed in the gritty water around the bar as the storm run off mixed into the sea.

And if I hadn’t surfed in that water I might have never picked up that ear infection.

And if I hadn’t got the infection maybe my arthritis wouldn’t have come back so bad.

And if it hadn’t, maybe it wouldn’t have damaged my aorta.

And if my valve wasn’t damaged then I wouldn’t be worrying about open heart surgery.

And if I ever find that butterfly, trust me, there are going to be some strong words.

June 5, 2008

MRI, where am I

Filed under: Aortic Valves,Reactive Arthritis — terence @ 12:33 pm
Tags: ,

[Note: some of the info. in this post is out of date; I misunderstood – see here]

Last week I had an MRI scan. Nothing near as dramatic as an angiogram, but claustrophobic enough to make me glad I’m not a vampire and don’t sleep in a coffin.

Anyhow, the purpose of the MRI was to determine whether my aortic root was stretched sufficiently to warrant having it replaced as well as my aortic valve. It was, and this means I’m in for more complicated surgery although, according to the cardiologist, it shouldn’t make for a worse prognosis or longer recovery time.

The other thing the MRI picked up though was the fact that the walls of my aorta are thickened. Which probably means that there is still active inflammation there.

Now this is a problem, as inflamed tissue is harder to perform surgery on. So we need to find some way of reducing the inflammation before surgery. The trouble is that the three top candidates for doing this – steroids, methotrexate and TNF inhibitors – all have side effects that aren’t particularly desirable if recovering from open heart surgery is your thing.

So it’s a bit of a worry. Although – and this I need to bear in mind – not too much of a worry. People on steroids, for example, are subjected to major surgery all the time and do just fine.

Summary: a bit less ok, but still ok. Sigh.

April 24, 2008

An Angiogram

Filed under: Aortic Valves,Reactive Arthritis — terence @ 12:51 pm
Tags: ,

Monday was angiogram day. That mean having a hole snipped into an artery in my groin. Through that hole a tiny wire and catheter were poked up into my heart. From the catheter radioactive liquid was squirted. And from that liquid an image of my heart was picked up by x-ray(?) and shown on a TV.

From what he saw the cardiologist determined that I don’t have coronary problems to accompany my aortic ones. Hooray! What he did find though was that my aorta has been stretched. So that might have to be replaced with the valve too. Not so hooray.

Anyhow, I’m one step closer to surgery and you’re wondering just what it’s like to have your heart squirted with radioactive stuff.

Well…the actual squirting was odd, but not that bad . First I felt a warmth in my chest a bit like that caused by a shot of whiskey. Traveling at the remarkable speed of my blood, the heat then raced to my head and my feet. It happened in a moment. Your blood really, really doesn’t mess about in its trip around your body.

I’d be lying if I said that the angiogram as a whole wasn’t a little unpleasant. But it was bearable. Easily bearable.

It was my first time in an operating theatre too – and that was kind of surreal. In the background they played reggae music (I’m not really a fan of Wellington reggae but it did help me relax). And at one point I swear that both the nurse and cardiologist were humming and swaying too it. I half expected them to break out into song. And for a moment, I was lying there on the edge of the musical of my heart problems. “His heat is bad, it’s very sad…”

Musical or not, the cardiologist, nurses and assorted medical personal were all professional, friendly and kind. It really helped.

As I left the theatre, two other people were queued up behind be waiting for similar procedures. For a whole morning, at least one day a week, the doctors and nurses in that unit perform angiograms and similar operations. One after the other. I can’t imagine how stressful this must be. I’m in awe of people who do this for a living.

April 1, 2008

Valve-broken

Filed under: Aortic Valves,Reactive Arthritis — terence @ 12:52 pm
Tags: ,

It wasn’t that long ago that I wrote a post on how good it was to be largely free of the symptoms of Reactive Arthritis. I spoke to soon, I guess. Some time over the last few years, inflammation has damaged the aortic valve from my heart. It is now leaking, causing my heart to stretch. And I need the valve replaced before my heart itself is damaged. Valve replacement is open heart surgery but the risk of serious complications is small. If things go ok I can expect a 1-3 month recuperation period and a more or less normal life afterwards. If I stay within the public system I can expect to wait between 6 and 9 months for surgery.

I’d be lying if I said I wasn’t anxious, or disappointed – the need for surgery has derailed what were looking to be exciting plans for the year. But, of course, things could be worse.

Anyhow, I intend to write more here about events as they unfold. I do get the odd person coming through to this site who has Reactive Arthritis, so maybe my experiences might be useful. You can reciprocate too. Any experiences of open heart surgery (doesn’t have to be stemming from arthritis, or even valve replacement) are much appreciated in the comments box below.

[Update: If you do read this and have Reactive Arthritis – don’t worry. Heart problems are a very, very rare complication of Reactive Arthritis. A rheumatologist friend of mine described my situation as a ‘textbook complication that you only ever see in textbooks’. So the odds of you encountering similar problems to me are small.]

Oh – and I think there may be a couple of people from work and the immediate surrounds who read this blog. My need for surgery isn’t a secret, but it isn’t public knowledge yet either (partially because I can’t really figure a way of telling people…)

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