overview of new book

Book about transplantation and organ donation.

Table of Contents

1.    Prologue

2.    Childhood

3.    My Years In Entertainment Industry

4.    Illness And Death

5.    A Year Terminal

6.    Transplantation

7.    The first couple of years after Transplant

8.    Queensland Health, what a mess

9.    Reinventing Myself In The Broadcast Media

10. Organ Donation In Australia

11. Awareness Campaigns Vs Effective Change Of Legislation

12. The Problems We Face Dealing With Religion And Misinformation

13. Artificial Hearts. Are they the answer?

14.  The Case For An Opt Out System

15.  A Case Study: Spain And The Roman Catholic Church

16.  A Case Study: Former All Black Jonah Lomu

17.  The Solution To Saving Lives 

18.  A List Of Australian Legislators And Their Beliefs

 Bibliography

chapter 2 abridged

well here it is the very abridged version of chapter 2. this is only a couple of pages of what will probably be the hardest chapter of the book to finish writing. i was tempted to keep going as once i started this chapter the memories came flooding back but i decided to take it easy and will write more later. smile emoticon DM

Chapter 2

Childhood

I would like to say childhood was wonderful and a breeze but that is simply not the case. It is a tribute to my mother’s courage and strength that she raised me with the right values and at no stage did I turn to drugs or crime despite rollercoaster ride that was “childhood”.

My father did all the things he needed to do as a Dad when I was a child but he forgot how to be a husband. To put it bluntly he became a violent alcoholic and took it all out on my mother. Towards the end he started to take it out on me as well as I transitioned to a teenager.

Mum used to say that after coming back from the Malayan Emergency he was never the same. Mum and dad were not together during that time but she sure as hell had to deal with the aftermath when they became a couple. Unfortunately the Australian defence forces have had a dismal record down through the years of looking after our returned servicemen.

The Malayan emergency like so many conflicts was a war in every way but name. By that I mean there were combatants fighting for a cause and those combatants were required to do terrible things including killing each other. As any soldier will tell you, once you start having to kill people you are participating in a war no matter what the politicians of the day decide to call it.

It was quite common when dad was in one of his drunken stupors for him to start speaking Malay. When that happened we knew that we were in for a rough time until the drinking stopped.

The worst day each year was Anzac Day. Down through the years it became more and more horrific to the point that I hated it. It has only been in my mid forties that I have been able to finally embrace it. The day would start early and as usual so would the drinking. By the time the sun was setting it was not unusual to have the police around or dad fighting with the next door neighbours. I really hated Anzac Day all those years.

Many times over the years we would simply not be able to go back home and mum, my sister Tracey and myself would end up in domestic violence shelters throughout Queensland, each time going progressively further north after using what must have been every available shelter in south east Queenslander.

As I grew older I started to feel underlying guilt that I wasn’t big enough to protect my mum however I was starting at the age of twelve to thirteen becoming braver when it came to talking back to my father. I think mum started to realise this when she decided to leave for good. She knew that dad would end up killing her and probably me as well. This may also have played a part in the extraordinarily close relationship we had. Despite a few hiccups in my later teenage years I loved my mum more than anything in the world and there is nothing that I would not have done for her. She was and always will be the first and most important love of my life and there isn't a day that goes by that I would give literally anything for her to still be here.

By fourteen years of age I was starting to grow and always playing football and cricket two years above my normal age group. I think mum could see a clash was coming and I was nowhere near big enough to take on my father despite my teenage hormones telling me otherwise. Early in 1983 mum decided enough was enough. With the help of close friends she packed and one day we came home from school and she was ready to get us out of there. After some time in another shelter in Brisbane she finally knew where to take us. Townsville.

Well as you can imagine at 14 years of age and leaving all my friends without saying goodbye including a girl that I was hoping would be my first girlfriend, I was less than impressed. How wrong I turned out to be. I can think of no better place to grow up than the Townsville of the early 1980’s. a beautiful tropical city with what was at the time probably the most appealing city frontage on the east coast of Australia. A town with all the amenities of a big city but with a beach frontage looking over a glass like body of water to a beautiful island that also doubled as a suburb. It was paradise.

At the end of 1983 mum and dad made one last attempt at reconciliation. In hindsight I don’t know what mum was thinking other than despite everything she did love my father. I guess there is also the classic problem of victims of abuse somehow trying to justify reconciliation with their abusers. It was a disaster after re enrolling in my old high school in Shailer Park in Brisbane and rejoining my team mates at my old cricket club, within a couple of weeks my father was back to his old tricks and after a stop at yet another shelter in Brisbane we headed back to Townsville.

My father managed to make contact again over the next couple of years and I even went down for a visit but he was to die of a massive heart attack in 1985 halfway through my final year in high school. I didn’t realise it at the time but I would spend many years looking for a father figure after he was gone.

prologue of my book

Prologue

What you are about to read is a story of an ordinary person who has been lucky enough to experience an extraordinary life. A life of re-invention. A life of extremes both mentally and physically and how a man coped with them and came through the other side.

This book will also look at the current situation here in Australia in terms of organ donation awareness, the pitiful organ donor rates and how we can learn from other countries how to do it so much better.

To put it simply there is no excuse to have a situation in a country that has such an amazing standard of living as the Commonwealth of Australia to also see people dying of diseases that can effectively be “cured” through organ transplantation.

We will take a look at why so many people die when they simply do not have too.

We will offer solutions to the problem and with your help maybe even get our legislators to make the changes that will save thousands of lives.

So I invite you to turn the page and join me on not only my journey but what will hopefully be the first step in winning the war against the bureaucracy of health and politicians that aid them through their procrastination.

a brief overview after the latest heart attacks in September 2014

Well here we go. The time has come to put it out there. For many years I have kept the details of a 12 year ordeal to myself and just a few close to me. My need and want for privacy had meaning when there was genuine hope and real chance of certain procedures and medications working to save my life. Unfortunately this is no longer the case.

The past few weeks have seen my health do very bad things. Unfortunately my worst nightmare has happened and what I thought was just a serious case of Cytomegalovirus (deadly to heart transplant patients but can be treated with antivirals) has also turned out to be multiple heart attacks.

The prognosis is simple. Further confirmation on a diagnosis from back in February 2011. Terminal Transplant Vasculopathy. It used to be called Chronic Organ Rejection years ago. Unfortunately the blockages have worsened and there is nothing that can be done except re-transplantation and that has all but been ruled out unless certain extremely unlikely parameters concerning my lungs and kidneys are met.

I have been dealing with failing health for the past 3 years and have kept it mostly to myself. There are things I haven’t been able to hide and have had to live with everyone seeing them which obviously doesn’t help when you are trying to somehow earn an income. Below is a highlight reel without putting everything down as I really am writing a book and have to keep something for that.

I also hope after reading this some of you will realise why my posts have become more and more cranky and less tolerant of people bitching and moaning about their terrible day or how they are feeling sick or even the automatic horror when the word cancer is used when I know first hand there are worse things to die from and live with. I do not have the luxury of the possibility of remission.

January 2002 massive cellulitis infection in right leg. Couple of weeks in hospital very ill.

July 7 2002 Massive Heart attack. Dead for twenty minutes. Hypoxic brain injury.

July 12 2002 massive heart attack more damage heart stuffed.

Christmas 2002 right leg starts to bleed out after bad angiogram which included SVT attack which needed defibrillation after heart stopped one again. This was a common occurrence before my transplant. Nearly lose right leg after bleeding continues through to New Years Eve.

Jan 2003 minor heart attack. Placed on heart transplant waiting list.

May 2003 acute renal failure. Kidneys completely shut down body drying out.
Pulmonary pressures rise looking at probable heart and double lungs transplant.

June 2003 heart transplant. Operation takes 3 days to close chest after reaction to drug used in operation. Mother has heart attack at my bedside when told bad news.

January 2004 Cytomegalovirus infection. Nerve damage to spine, chest wall. Agony.

March 2004 Staph infection picked up in chemotherapy unit while fighting viral infection.

August 2004 thyroid removed after side effect from amiodorone.

2005 Abdominal hernia can’t be fixed due to transplant drugs .

2011 angiogram shows transplant vasculopathy with so surgical option. Only hope a drug called everolimus.

September 2012 eight teeth removed under general to take care of huge infection around wisdom teeth.

May 2014 Specialist advises it is time to get a wheelchair.

September 2014 Cytomegalovirus and multiple heart attacks. Airlifted by RFDS from Mareeba to Brisbane. Angiogram and Biopsy confirm heart attacks and that everolimus has failed. Condition now terminal.

Plus gout, tenosynavitus , rheumatism and over 35 cardiac catheter procedures through the groin, neck and wrist along with countless hospitalisations that I don’t bother counting anymore.

I am writing this after many sleepless nights weighing up all the possible consequences of going public so to speak with details of what has been a mental and physical ordeal. I have gone through most of this alone with no girlfriend or wife to ease the pain and now with mum’s passing three years ago, no family either.

I cannot express the difference that a simple cuddle and a talk can make. Yes it can even mean the difference between life and death. I don’t think I need to elaborate on that last sentence.

I am a 46 year old very single man alone and have nowhere near yet reached his potential or achieved the many things he still wants to do in life.

I have spent my life doing everything I can to help others and have tried to make things right when they have been unfair. I was lucky enough for many years to be able to use my forum (radio) to give people a say when they otherwise would not have been able too.

The joy that I saw on people’s faces when they realised there was someone in the media who was prepared to put his own job on the line to stick up for them made it all worthwhile. The tears that I shed for people at the Nathan evac centre when I realised that I didn’t have the heart to go and shove a microphone in front of their faces after their homes had been destroyed in the flood. The red cross girls who I am happy to say I still keep in touch with on Facebook (not enough) who realised I was having an awful crisis of conscience and started to bring me people to interview as I couldn’t bring myself to intrude on them

Apart from the suffering of those people I wouldn’t change any of those things.

Whilst my body is failing my mind is still working well as evidenced by the top quality of my reporting and anchoring roles on the radio. There are people in the business who still believe in me and I would like to think I haven’t let them down.

I am now angry at the unfairness of it all. So much left to do and bugger all time to do it. I was worried what people would think seeing me angry upset and cheated but right now I don’t give a damn and if your offended once again go be falsely outraged with somebody else because one thing I don’t have is the time or tolerance to debate the subject with you. Its time I finally let it all hang out..

My goal is to be alive for next years Townsville State High School reunion for class of 1985 and to make it the night of my life. If anyone thinks they are going to get their hands on that microphone you are going to have to wait as I am not ready to hand those duties over. After that everything is a bonus.

To those of you who have stuck by me through all of this I love you dearly. To those who couldn’t be bothered so be it. Just remember what goes around comes around eventually.

As I have said above, there is so much more to tell and it is only a highlight reel so to speak. I’ll leave the rest for the book.

For now I believe I have more than paid my dues in life and have more than earnt the right to blow my top occasionally. I am immensely proud of my 31 years in the entertainment industry and media and 41 years in sport and would like to think I have given back far more than I received. That is the most enjoyable part of it after all.

I will never stop fighting to stay alive as I believe we only have one shot at this thing called life and we better make our mark while we are here.

Eatem alive Tigers! Bring on 2015!

Lost & Found: What People with Brain Injury Want You to Know

Lost & Found: What People with Brain Injury Want You to Know

From Healthcaresolutionsplus.org. author unknown

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.