Monthly Archives: May 2016

The Beat Goes On

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“So the soap opera is told and unfolds
I suppose it’s old partner, but the beat goes on
Da-da dum, da-dum da-da, da-da”

“Lose Yourself” Eminem

Over the past month I learned that sitting around hospital wards doing very little could be extremely tiring.

It took me less than 24 hours to remind me that sitting around home with a toddler for only a few days is absolutely exhausting!

It was fantastic to be back home, but my wife, Toddler in Frame and I were all passed out on the couch mid-afternoon the day after my return.

Having been sedentary and on a short leash for so long my fitness levels were a bit of a write-off, so I made a point of going for walks each day – usually down the road to the shops for groceries and even into town when I was feeling energetic / masochistic.

On one of my first flânerie I met a friend who lives nearby. Her first words upon seeing me were “AARRGGHH, the walking dead!!”

Thanks, Sarah, it was good to be back.

I was sitting the couch with Toddler in Frame watching the recycling men pick up our bins the Friday after my discharge when my phone rang. It was Dr Andrew Aitken – one of the Wellington cardiologists – They had just got the results of my biopsy back and he thought I should be the first to know the details.

The thing attached to my heart is a Cardiac Fibroma and it is pretty big.

It measures around 6cm x 4cm x 4cm.

Your heart is roughly the same size as your fist – Which makes my heart about 10cm x 9cm x 8cm, – which made the fibroma around half the size of my heart!

As it is presumably made of heart muscle tissue does that mean I essentially have a heart and a half?

Holy crap – I’m Doctor Who!!!

Fortunately (especially given its size) it is benign.

It didn’t just suddenly appear overnight at that size either, so had presumably been slowly, quietly growing there for some time.

So what will they do about it?

Aside from monitor it – Nothing.

• While attached to the heart, it isn’t impeding blood-flow or regular operation of the big cardiac muscle or anything nearby.

• Surgically removing the fibroma would only cause the body undue stress and given it’s partially in my left ventricle; this would also mean a decent sized hole in my heart that would need patching up pretty darn quickly and securely.

• While the tachycardia that put me in hospital and set this whole chain of events off had not made a return in over a month, I still might need an ICD, just in case.

There is a good chance the fibroma is part of a bigger picture too.

When combined with my history of Basal Cell Carcinomas, it looks like I may have something called “Gorlin-Goltz Syndrome” – an inherited medical condition that makes you more prone than usual to BCC’s and random cysts (sounds familiar…).

Interestingly, in Australia the incidence of Gorlin Syndrome (or “NBCCS” as it is also known) is around one in 500,000-150,000 and only 10{3919f50c199a8627c147b24d329ff0de8aa05e3a462fa3330e11cd9ea56ed948} of those develop cardiac fibroma, which means:

I’M ONE IN A MILLION!!!

And Dad always used to say I was “won in a raffle” – Ha!

I had an appointment with geneticists several weeks later to investigate things further. They took blood samples and we will find out in a few months what the story is, or if this is something I might have passed onto Toddler in Frame (although she shows none of the early signs).

So where does this leave us?

Other than a fast heartbeat, an electric shock, several weeks of upheaval and a biopsy scar that makes it look like I’ve had a boob job ( my daughter calls it “Smiley Face” 🙂 ) I am exactly the same as I was before all this started. So is the fibroma

I feel like I have kind of let you – my friends, family and readers – down a bit.

There is no big finale, no “Blaze of Glory” to go down in. No lifesaving transplant surgery, or radiation-induced superpowers to heroically finish this lengthy series of posts with.

Life “has returned to normal”.

There are subtle changes, though.

I sub/self-consciously notice my own heartbeat more.

I notice and enjoy the normality of, well, “normality” more.

Having been stuck inside for so long even little outdoorsy things like a warm breeze or rain on your face become wonderful, natural interactions.

I appreciate what awesome family and friends I have more – Even those I had (and some I still have) never met in person were so wonderfully supportive and helpful (and sent me chocolate too!).

I appreciate the work of our dedicated, caring medical staff.

And while I still “sweat the small stuff” occasionally, having faced such major uncertainty for such a length of time has certainly “levelled out” my life-view and doesn’t make major things seem so major.

And ultimately I am still here.

I can share my experiences with others, I can hear others’ experiences.

I can give my wife a kiss and my daughter a cuddle – Toddler in Frame has just started saying say “I Love you Daddy/Mummy” – I can’t get enough of that!

So I can’t complain –

There are people out there worse off than I am.

CODA

I really can’t say thank you enough to those who supported me physically, nutritionally, emotionally, intellectually, literally and even just with their company.

A special thank you goes to the staff of Hawke’s Bay Hospital’s Emergency Department who zapped me back to normality and the Coronary Care Unit who helped me see through those first days of dark uncertainty.

My biggest thanks goes to the staff of Wellington Heart and Lung Unit who had to pay the biggest price of putting up with me the longest and ultimately figuring out what was wrong with me (I know I’ve missed a few names – Sorry!):

Nurses: Wanda, Juliet, Rosanna, Sylvana, Mitch, Krystle, Whitney, Susan, Louisa, Neena, Kerri, Lorraine, Lisa, Nicola, Darly, Janette, Lyn, Mariska, Siobahn, Lou, Gemma, Tony, Alistair, Fiona, Zoe, Gina, Shan, Gemma, Anu, Anjalay, Wendy, Rosie, Leanne, Renaye & Stephy.

Student Nurses: Rachel, Emily and Samil.

Healthcare Assistants: Nemi, Mel & Ropeta

Food & tea/coffee ladies Deb, Bunny & Beth.

Administrator: Ilona

Physio: Daniel

House Surgeons / Registrars: Doug, Deanna, Alice, Natasha, Cassandra, Jessica & Davida

Cardiologists: Drs Webber, Wilkins & Aitken

Cardiothoracic Surgeon: Mr McGivern

These people help complete strangers survive life-threatening issues every single day and deserve all the help they can get.

If you would like to make a donation to help them buy more equipment, further their studies, support more patients and save more lives, you can make an online donation HERE

Rest, Recovery and Ryan Reynolds

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Bed

I’m cruising through Newtown and over the hill to Kilbirnie. Before I know it I’m launched into the air over Lyall Bay.
The rocks that surround Moa Point, jagged and sharpened by centuries of Cook Strait swells look like the teeth of an ancient, sleeping Taniwha.
I’m sure I see an eye wink amongst the windswept grass – the beast is threatening to rip me to shreds.
I climb higher and slowly turn. I see an unfamiliar, narrow inlet and wonder what it is, before realising it’s the inlet to Port Nicholson – Wellington Harbour.
Despite the channel’s width the choppy waves breaking on Barret Reef make it hard to believe two ships could pass each other through there without both vessels and crews holding their breath.
I soar on. Past Pencarrow Head and around Cape Palliser, heading north.
I’m going home!
I climb higher and before I know it am above the clouds. White, fluffy merengue below, bright blue and radiant sun above.
Is this what heaven looks like?
Should I be disappointed that it all seems a bit clichéd?

Anyway, where was I?

Oh, yes:

“The chief anaesthesiologist says “Right, Andrew, we’re going to start sending you off to sleep now, just relax and breathe.” I relax, breathe, blink and..”

I’m in “PACU” (Post Anaesthetic Care Unit) as it’s called in Wellington Hospital.

A couple hours have evaporated in the blink of an eye.

I don’t know what they’ve done to general anaesthetic these days, but it’s become a narcotic ninja!

I remember operations years ago, where you were aware you were going under – You’d feel woozy or your hearing would go all funny and then “zonk” – Not any more.

It takes a bit to regain full lucidity, but out the corner of my eye I see one of the head anaesthesiologists who visited me the yesterday before the operation, at least I think I see him – Things are still a bit ethereal and I imagine guardian spirits have learned to wear clothing to suit their surrounds by now.

His presence reminds me of something one of the doctors said and I touch my chest to make sure they haven’t had to crack me fully open – I can’t feel any bandages so breathe a little sigh of relief.

Instead I have a ten centimetre, curved scar just under my left breast, with a chest drain tube inserted into a hole just below that.

(Once the bandages are off it looks like I’ve had a boob-job and then been shot.)

He says the biopsy was a success – In fact, instead of getting three samples, they were able to get four!

I give a tired, even more relieved smile.

We’ll soon know just what this thing is.

I’m kept in PACU for around two hours – Which would feel like a long time if not for the drugs, comfy bed and numerous cups of tea and sandwiches.

I tell the nurses it appears the Wellington real estate market has followed Auckland’s maniacal lead and the bed space I left in the Heart Unit that morning has been bought and sold three times while I have been in theatre and recovery – hence the delay.

Sadly I get no share of the profits, but it provides entertainment.

Throughout my stay I’m reminded of the “Deadpool” movie trailer I’ve seen numerous times (it’s all I’ll get to see until its DVD release as the movie’s run in theatres coincides almost perfectly with my enforced hospital stay) where one of the baddies say “The one thing that never survives this place is a sense of humour” and our eponymous protagonist played by someone as equally chiselled, charming and um… Commonwealthean(?) as yours truly, Ryan Reynolds (he’s a year older than me, but I’m six inches taller than him), replies “We’ll see about that”.

Stay positive, make jokes.

There’s someone out there worse off than you.

I have a couple of the bigger IV lines removed which I am grateful for as they looked big, uncomfortable and, well, “icky” and am eventually wheeled back to the Heart Unit, but put in “Step Down” which is an open-plan room where the nurses can closely monitor six beds at once rather than a more widely spread “pod” of individual rooms.

Having had nothing other than tea and sandwiches since the night before, lunch and dinner are well received and quickly vaporised.

As I eat, though, I keep bending my right arm, which in turn makes an IV line in my arm move and sets off the alarm on the line’s pump. After an hour of sporadic beeping (and accompanied quiet cussing from me) one of the nurses jury rigs the line to my arm with a cotton swab and some sticky tape.

The pain-relieving epidural they put in before the operation has numbed me from roughly armpit to thigh level, so I’m confined to bed for the rest of the day and night.

This numbing poses some extra challenges:

As this this large area under anaesthetic includes my heart, it means the heart doesn’t pump as much as it usually does. So to make up for this they hook me up to a saline drip and basically substitute blood pressure with water pressure – Around ten litres of fluid goes into (and out of) me in roughly 24 hours to try and make up for the depleted pumping.

But this, the nurses tell me, can have a side effect –If your body has too much fluid going through it, it can have the same result as getting too little fluid (dehydration) and cause an electrolyte imbalance and can send your heart into dysrhythmia and TACHYCARDIA!

You must be freaking kidding me!

After all the hoopla of hospital and tests and weeks of waiting – the tachycardia, to my thinking at least, WAS CAUSED BY DEHYDRATION?!

This means the discovery of the growth on my heart was basically just happenstance?

Oh, come on!

I suffer through a night of broken sleep due to the nurses constantly monitoring (and worrying about) my low blood pressure. This is compounded by a lamp on the nurses’ station deciding to join in on my irritable insomnia by somehow positioning itself to shine right at my bed. It isn’t until early morning that one of the nurses moves a curtain and curtails its caustic candle power.

Breakfast the next morning is accompanied by a physiotherapist named Daniel who gets me to get up out of bed and take my first cautious steps in 24 hours.

The movement, breakfast and change from horizontal to vertical planes is just what my blood pressure needs and it miraculously returns to normal straight away (or maybe it was just bored).

That morning my wife also arrives for her second visit of my Wellington stay. This time her trip is funded by wonderful friends of ours (thanks Kim and Reza!)

The next three days are devoted to rest and recovery.

I have my last two major lines (the epidural and a catheter that has been looking after, um, “water flow” removed a day or so after the operation and the freedom it provides (despite having only been in place for a few days) is remarkable.

Mrs Frame goes on supply gathering missions (she is even stricter about me leaving the ward, let alone hospital grounds than the medical staff!) and more Wellington Twitter friends come to visit us (thanks Jim, Morgan and Mike).

As I’ve said, the Wellington nurses are great – and just to prove it, on the day I go home all the ones I have had contact with over my stay come to say goodbye and give me a hug – Four of them line up to do so as I’m leaving, much to the chagrin of my wife and the orderly who is supposed to escort me down to the transport centre.

Before I know it (and, as it turns out, several hours before my wife’s return flight home is due to leave) I find myself cruising through Newtown and over the hill to Kilbirnie in yet another Wellington Free Ambulance with another patient and her daughter, before launching into the air over Lyall Bay (see what I did there?) and flying home in the Hawke’s Bay Air Ambulance.

It will be a week before I find out the results of my biopsy, so what better place to recover and wait than at home?

Operation

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One thing I have been unable to evade throughout my Adventures in Tachycardia is my heartbeat.

That sounds odd, but it’s a mixed blessing.

You can hear and feel it, so you know you’re still alive (which is a good thing, obviously), but it’s also a constant reminder that there, right next to the thing making that “thump-thump, thump-thump!” sound is something that shouldn’t be there – And not even the highly trained medical professionals looking after you appear to have the first clue what that thing is.

Before they let me go home for Easter I was told the hospital would be in touch on “Easter Tuesday” to let me know my travel, admission and surgery details, as I was scheduled to come back down to Wellington on Wednesday for surgery on Thursday.

When I hadn’t heard from anyone by 2pm on Tuesday I called the hospital and was told I had to make my own way down to Wellington on Wednesday – the next day – when I can’t drive and all the busses were booked out.

A frantic hour and a few phone calls secured an Air New Zealand flight down to Wellington the next morning and I made it to the hospital with time to spare, but the $333 one-way price-tag not only gored our bank account, but it galled me personally and reinforced my previously held opinion that we here in Hawke’s Bay are getting absolutely screwed over on airfares.

On readmission I am sent down for a chest X-ray and yet another blood test.

I’ve lost count of the number of blood tests, lines and needles that have been poked into me in the time I’ve been in hospital, but I’m pretty sure there’s a voodoo doll out there somewhere in a great deal of pain screaming “WHAT THE HELL DID I DO?!”

The surgeon who will be performing my biopsy (they have decided to go between my fifth and sixth ribs and take needle biopsies – kind of a medical core sample) visits and runs through how things will go.

He’s part reassuring – It all sounds very clinical and reasonably straight forward..

Part concerning – “As we don’t actually know what this thing is or how solid it is, we may not be able to take a biopsy..”

And part straight out scary – “If things go wrong, we will have the bypass machine there ready to hook you up to…”

He is followed by the anaesthetic team who let me know just what sorts of drugs I will be given for the operation and how many lines and tubes I will be hooked up to for the procedure.

As an aside they brightly inform me just how easy it is to deflate a human lung to provide easier access to the heart – charming!

The day wears on and I eventually make my way to bed, staring down the barrel of the impending unknown early the next morning, with the ever-present “Thump-thump, thump-thump!” quietly chugging away and its silent buddy right next to it.
.

My room is at the southern end of the hospital, right above the hospital’s Emergency Department and a short distance from Wellington Free Ambulance’s headquarters, so every once and a while the “thump-thump, thump-thump!” is interrupted by ambulance sirens as they leave or arrive. It reminds me of the line from Don Henley’s glorious “New York Minute”:

“Lying here in the darkness
I hear the sirens wail.
Somebody’s going to emergency,
Somebody’s going to jail.”

There is someone out there worse off than I am.

I wake early the next morning, go through pre-op cleaning rituals and before most of my fellow patients are even awake, I’m being wheeled down to theatre.

I’m beginning to get scared.

They wheel me into the theatre itself and I shuffle over onto the operating table where the poking and prodding of intravenous lines begins – some of these lines are quite big and local anaesthetic is used to numb the areas, but a lot of pushing and shoving is still evident.

I’m given a few drugs to take the edge off things and they get me to sit up so an epidural line can be inserted into my spine. There isn’t as much pain or discomfort as they tell me to expect, but the twinges as the line hits a nerve or two certainly makes for an interesting experience.

While I am having the epidural inserted a very nice, large, bearded English anaesthesiologist has his arm around my shoulder talking me through it.

It is very comforting and it feels like he is giving me a hug, but he is no doubt just making sure I don’t fall face-first off the operating table and onto the floor.

He tells me guys much bigger and tougher than I am have fainted during this stage.

I don’t faint.

They lay me down and start to ramp up preparations.

I’m getting a bit more scared.

I’m scared that I might not survive this.

I’m scared that this growth thing might pop, or start leaking and leave a large hole in my heart, requiring massive surgery.

Strangely I’m not scared about potentially leaving my wife and daughter behind, because I know they are both wonderful, smart and capable.

My work provides a level of life insurance, so I know they will be financially looked after for a while at least.

But I am scared that I will miss out watching my daughter grow up. It’s cheesy as hell, but when it comes to that: “I Don’t Want to Miss a Thing”.

I’ve been told that no matter how big or tough you are everyone cries when they are going in for heart surgery.

And it’s true – I shed a tear.

The chief anaesthesiologist says “Right, Andrew, we’re going to start sending you off to sleep now, just relax and breathe.”

I relax, breathe, blink and..

I’m Radioactive, Radioactive!

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tyj

Apparently I snore.

It’s the day of my PET scan and I’ve been chauffeured (via ambulance) to a private hospital (la-de-dah!) in the hills of Wellington.

I get undressed and into the standard sort of hospital gown you wear for all sorts of procedures, lie down on a bed in one of the ante rooms and relax while being prepared for the scan.

The sugary, radioactive substance they inject you with for a PET scan is attracted to muscle movement, so lying down and resting ensures the liquid is attracted to major moving organs like, in my case, the heart rather than moving arms and legs. They actually prefer it if you have a bit of a sleep, so I oblige.

The transit nurses who accompany me to and from the scan tell me later I snored. Not obtrusively, but just enough to show I was happily out to it.

The scan itself is all rather standard and anticlimactic, in fact I just about doze off again!

I’m zipped and zapped and rolled in and out of what appears to be a giant, multimillion dollar, electromagnetic donut.

The most unusual part comes after the scan when I’m ushered into a (lead-lined) changing room (the doors in this place are all incredibly heavy) and told to wait in there for a while, as “You’re still a bit radioactive”.

Riiiight…

A Wellington Free Ambulance takes us back to Wellington Hospital and I spend the rest of the afternoon sitting around, trying to ensure any temporary, radioactive-induced superpowers I may have acquired don’t irradiate anyone, make anything explode or accidentally microwave food by staring at it too hard.

We get there, sadly, without incident.

The day before the PET scan I was just about ready to start climbing the walls – Not through cabin fever (I was allowed to go for a wander into Newtown and get a shave and haircut at a barber shop a few days before), but just the lack of general exercise.

I want to run, I want to bowl, I’m feigning on and off-drives in the corridors because my arms and legs are getting bored from inactivity, but the ever-present fear of tachycardia returning limits what I can do.

I’m just about to ask the Cardiologist what exercises I can do when he notes there hadn’t been any sign of the VT for at least two weeks, so he’s sending me down to do a fitness test on a treadmill to see if the tachycardia returns under stress / exertion (of which there is sod all in daily ward life).

If I can survive the treadmill test without any arrhythmia it also helps make a good case for letting me go back home to Napier for Easter Weekend! The doctors are aware I’m far from home and missing my family, so every little bit helps.

So later that morning I’m wired up to heart rate monitors and put on a treadmill with a technician and a House surgeon keeping a close eye on me. The test is set to last about 15 minutes, with the treadmill‘s speed and incline increasing every few minutes.

I only make it to about six and a half minutes before my legs give up on me – Nothing heart related, just a lack of fitness and condition after spending the majority of two weeks sitting and lying around being inactive, which annoys me.

The up-side of the exercise, um, exercise is despite pushing the heart rate higher than it had been in weeks, there is no sign of tachycardia! This is a very good sign and gets me closer to home, if only for a while.

“Easter Thursday” arrives and, despite being told the results for the PET scan would take up to ten days, my Cardiologist is able to give me the results right away.

They are: Nothing.

We had been hoping that there was another, far more accessible growth like the one on my heart in me somewhere.

There isn’t.

Back to the cardio-thoracic drawing board.

On the upside PET scans are primarily used to detect cancer and the scan has detected nothing cancerous either, which is a good thing.

The heart surgeons will have another get together and figure out how they are going to do a biopsy on me, but that will take a few days and it’s a long weekend…

So they’re sending me home for Easter!

The Hawke’s Bay Air Ambulance is bringing someone down that afternoon, so I and three other HB patients get to hitch a lift back home on it.

Home at last!

Albeit for only a few days…