“I don’t want to die!” screamed Robert at a decibel level that shook the entire ward.
Bob was now convinced that the doctors were trying to kill him through the air-conditioning and by not giving him the drugs (he thought) he needed.
I would have some sympathy for him but he woke me (and everyone else) up at 2am and to be frank, I had a much better chance of not making it through the night then he had.
Get Your Life In Order and Have Some Fun
At the age of 23 I was diagnosed with Hypertrophic Cardiomyopathy. It’s hereditary. It can’t be cured. And it kills. Mostly fit, young people who have no idea they have it.
Without putting a fine point on it whenever you hear of someone dropping face down dead doing something like jogging around a park it’s probably undiagnosed HOCM lurking in the background.
When my Cardiologist found out that my birth mother had died of it when she was in her early 20’s he, well, freaked out.
His response was “You’ll be dead before you’re 25 so get your life in order and have some fun”.
Fast Ferraris, Fast Boats, Fast Life
So I got on with it.
What a life it has been! I have been blessed to have done more, seen more, experienced more, lived more, breathed more, held more, felt more, learnt more, influenced more, enjoyed more, loved more than most people do in ten lifetimes.
I wanted to be able to say to death when it came, “F you death. Do what you will. For I have lived!”
And for a quarter of a century that certainly was the case. Sure I loved the things, but what I was doing was collecting experiences and, as much as possible, sharing those experiences with friends.
A broken heart
Fast forward 25 years and my heart decided to remind me of how important it is.
Right in the middle of film school, one of the most important endeavours in my life until that moment, my heart “failed”.
Heart failure is a weird disease. It sounds like your heart literally stops. It doesn’t. It just makes your life crap. Breathing is impossible, you’re literally drowning in your own fluid and forget about anything that resembles fun.
The Man who Refuses to Die
Straight in an Ambulance over to St Vincent’s and my Cardiologist calls me “the man who refuses to die” as if that’s a bad thing.
Lots of drugs follow and after a few weeks I’m back to normal. Another downside of Heart Failure is it comes with a lot of associated shit like Diabetes and Cellulitis, a potentially fatal skin infection (seeing any trends here?) that flares up from time to time.
So, once again I just decided to get on with life. To have as much fun as I can, to be me. To tell people what I want and need and leave it to them if they want to participate or not. To not care what people think of me. To avoid stress and keep happy.
To make my movies and try not to care too much what people thought of them (LOLz, as if?).
But also to be a nice as I can. To try to understand what’s going on for others and accepting everyone has stuff going on in life. You may never know.
Believe it or not, while this sounds like a pretty straight forward formula for life, many people, including some of my best friends, have found it challenging.
I’m just not engaging in people’s drama any more. And if I want something I simply say it. Everyone has the right to answer “no” but if we can’t say what we want how will we ever get it.
Stomach Pain Level: Childbirth*
*with apologies to those who have actually, you know, given birth.
Which brings us to today.
Prior to being admitted to hospital I had been to a Doctor complaining about stomach pain. It was excruciating. She said it was only a bug and to go home and wait it out. After a week with no improvement I went back. She ordered stool tests and a few days later they came back negative.
She then prescribed antibiotics and told me that if I hadn’t improved by Monday to start taking them. She also gave me a referral to a new Cardiologist.
This was a great lesson for me. With my health issues I need to be more forceful and insist I get the care I need.
GPs need to realise that they are our primary carers. They cannot just palm us off onto specialists for ongoing health issues. I mean have you ever tried to book into a decent Cardiologist? They will book you in sometime in the next 37 years between their trip to Europe and the drug company paid junket cruise to Alaska. And then you need to take out a mortgage to pay them!
So, “lucky” for me my cellulitis flared up on a trip to Sydney. And lucky my Sydney Doctor could see me urgently. She took one look at me and sent me immediately for scans. That’s two times they’ve saved my life.
On my way home I got a call from a number I didn’t recognise which I usually ignore but for some reason chose to answer.
The conversation went a little like this… “Hello Peter, this is Dr X from Mediscan. I wouldn’t normally do this but I can’t get onto your GP. You need to get straight to an emergency room. Can you do that right now?”
I did, obs.
Use “Life Threatening” in a Sentence
My GP called when I was driving to the hospital to make sure I was going. She had already called ahead, spoken to a specialist and had them on standby for when I arrived.
I had a thrombosis. More commonly known as a blood clot. If it let go, and it was looking like it could, I would almost certainly have had a stroke, a heart attack or a date with the grim reaper.
So yeah, that happened.
I love St Vincent’s – it’s a great hospital.
I was admitted immediately and taken up to the neurological ward with people who were in serious trouble. About this time I started to realise they weren’t joking when they used the term, “life threatening”.
It was also when I met Bob. Suffering from PTSD, an alcoholic and existing through numerous chronic illnesses he was very angry, very threatening and very disruptive. Another soul who’s fallen between the cracks of modern life.
The Best of Public Hospital Care
For the next week I experienced the best of public hospital care. And it’s good.
Downside for me is that I couldn’t sleep (mostly due to all the noise, complaints, threats, and abuse coming from Bob) and they have a very rigid timetable which didn’t necessarily suit me.
And it was cold. I have never been in a building (including one of my seminars) that was this cold. I was starting to think Bob might be right – maybe they were trying to kill us through the air-conditioning?
Other than that I cannot complain. The nurses were wonderful. They threw everything at it test wise and best of all it was free.
How could one of the richest countries in the world not want a system like this? I have never been able to have anyone in the US explain to me why universal healthcare is bad but BOY do they get fired up by it.
So I get my diagnosis and yup, it’s serious
You don’t get much good news in hospital but one reward of paying my health insurance for 30 years is I do get free private hospital cover and when a room became available and I was deemed “stable” I was transferred.
I said goodbye and made my peace with Bob and I hope he’s ok. To be honest, I don’t think he will be and that’s sad.
It was so quiet in my Private Room I had to turn on the TV show “Ambulance” for a little extra hospital drama!
St Vincent’s Private is going through renovations and I had one of the new rooms. It a bit Novotel circa 2005 but sorta Scandinavian practical and pleasant. No complaints.
In terms of care the primary difference is all my specialists came to see me rather than sending their registrars.
Oh and the food was a little better.
It was a weird experience as they worked through my long list of complaints deciding which to deal with and how to deal with it.
Fast forward 3 weeks and they have just let me out. There is a lot to be said about the convenience of having all the needed test, scans, specialists and carers in the one place but it’s good to be free.
I have never been happier to see blue sky and breathe fresh air.
Let’s talk about the elephant in the room.
Ok, so those of you who know me well have already gone to my weight. My heart condition is hereditary and cannot be cured. Being overweight (or anything in fact) does not cause the conditions I had so I was able to justify not paying attention to it.
But I have recently started to get a much better understanding of how my weight interacts with my health and places biochemical strain on my system and I now understand how important it is to act on that.
ALL of my specialists are insisting I lose weight. And it’s not going to be easy. First I have a very specific diet to follow and at least for the time being I’m hardly going to argue with all those doctors.
Secondly, and before all you exercise junkies get excited, I can’t really exercise a lot. I can gently walk or swim and that’s about it.
But I get it. If I am going to have any quality of life going forward it’s got to be a massive high priority for me.
The good news is I have already lost 14kg. Now my goal is another 30kg. In the end I have to get my BMI under 30. It’s a magic threshold. It’s only been 5 years since I was that weight so I think that’s achievable even with the constraints I have.
And then the BMI goal is 25 – 85kg. It’s been well over 20 years since I’ve been that weight but I’ll get a plan for that when I get there.
Frankly, my alternative is death. You know the old cake or death conundrum.
And one of the “best” things about being in public hospital is I got a lot of exposure to people with long term chronic health conditions and I can tell you for sure, that is a life not worth living.
Let’s get real about obesity
Obesity is probably the number one health issue facing the western world today.
In 2017-18, the Australian Bureau of Statistics’ National Health Survey showed that two thirds (67.0%) of Australian adults were overweight or obese (12.5 million people), an increase from 63.4% in 2014-15. The National Health Survey also indicated that almost one quarter (24.9%) of children aged 5-17 years were overweight or obese in 2017-18 (17% overweight and 8.1% obese).
And fact is when we are young we can get away with it. I had no real negative effects from being overweight until about 5 years ago. But now it is having a compounding effect.
Fat is dangerous. And we need to make that known. It’s not about body shaming. It’s about being realistic about what’s going on. Telling a kid (or an adult) it’s ok to be fat to make them feel better about themselves is symptomatic of how our society is afraid that any bad news to their kids will disempower them.
But having a go at them for being fat (like many people in the fitness industry did to me) won’t work either.
Like many contemporary issues we have to find a way to TALK about this. In a way that gets action.
Do them a favour and figure out how to have a talk with them. It might not work. Let’s face it my friends have been at me for 20 years but then again it just might.
First and foremost I have to say thank you to all the nurses at St Vincent’s who put up with me for so long with a smile on their face and care in their heart.
Not for one second did I think any one of them was less than 100% committed and they carried out their role with aplomb and professionalism despite all the drama going on around them, the abuse and threats, the long hours and the stress.
To me, these underpaid marvels of healthcare are real heroes.
And thank you again to my close friends who visited, brought things, called, texted, entertained and cared.
Being locked in as long as I was this was my lifeline and I am incredibly grateful to them for looking after me.
And thank you, my digital (and real) friends for following and caring.
So, as I stepped into the sunshine today after weeks being sick, in hospital, having up to 700ml of blood extracted from me and 9 needles in a day, and being convinced the air-conditioning was killing me I can say absolutely it’s great to be alive.
Life will never be the same but it can be better and I’m determined to make it so.
What I Have Learned
- Get that bucket list out and do it. No excuses. Find a way.
- If you’ve been given a 2nd chance don’t push your luck and ask for a 3rd
- Be you. There’s no one else. Accept who you are, ask for what you want and don’t be upset if someone says no. You just need one yes.
- There is never another now. So take the opportunity that is presented to you. Hug that person. Say sorry (believe it or not no one ever died from apologising but a lot of people have been made whole because of it). Don’t compromise, or do. But do it deliberately and without fear or resentment.
- Stay away from opioids. Bloody hell those things are good. No wonder it’s so easy to become a heroin addict.
- Some people, situations, moments and actions are toxic. They always will be. And this toxicity will kill you faster than any disease. Stay away.
- Nurses are heroes. But so are a lot of grossly underpaid people doing tough jobs under difficult circumstances probably to make your life better. Say thank you.
To Infinity and Beyond
Really, and I said this in all my seminars, the clock is ticking on all our lives. And we don’t know when the alarm will ring.
For however long I have my goal remains the same. To make dreams come true.
Love you all.