The Beat Goes On

“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% 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

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