Active Mind: Failing Heart:: My Life and Health Debate

Active Mind:

Failing Heart:

My Life and Health Debate

Gerry Delwig

Copyright © 2012 by Gerry Delwig.

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Contents

Part 1: Think, Debate, and Act

Chapter 1 Life Throws Me a Curve Ball

Chapter 2 Heart Health Isn’t a Game

Chapter 3 Communication Has Many Faces

Chapter 4 Why Me?

Chapter 5 Working Together Creates Results

Chapter 6 Health: A Political Minefield

Chapter 7 United We Stand

Chapter 8 Life’s Greatest Teacher: History

Chapter 9 A Violent Past

Chapter 10 Assumptions: History’s Achilles Heal

Part 2: My Journey Begins

Chapter 11 A Shaky Start

Chapter 12 You Are What You Eat

Chapter 13 Technology: The New Frontier

Chapter 14 Small-Town Life

Chapter 15 Keep in Touch With Your Emotions

Chapter 16 Creature of Habit

Chapter 17 The Blame Game

Chapter 18 Intelligence vs Education

Chapter 19 A Glimpse of Hell

Chapter 20 A Student of Life

Chapter 21 Capitalism Is Out of Control

Chapter 22 Time to Go to Work

Part 3: The Past Determines the Future

Chapter 23 Listen to Your Body

Chapter 24 Never-Ending Change

Chapter 25 Don’t Be Too Quick to Judge

Chapter 26 Never Give Up

Chapter 27 Health Professionals Aren’t Slaves

Chapter 28 Rebuilding From the Ground Up

Chapter 29 Hard Work Pays Off

Acknowledgements

Many people helped me get to this stage in my life:

Mum and Bill: The twelve months I stayed with them in Terang were crucial to my rehabilitation. The help and support they gave me is the reason I am talking to you now.

My family for offering continual support and encouragement:

Special thanks go to my loyal friends who stood by me during the tough times: Marlene, Karen, Leon, Trevor, Bill, Bernie, Graham, and Don.

Dr. Bayley; and the Health professionals at the St. John of God Hospital; Warrnambool:

Dr. Richardson; Dr. Kaye; and the Health professionals at the Alfred hospital:

Dr. Quinn; Dr. Dunbar, and the Health professionals at the Cambourne Clinic; Warrnambool:

Pat Smart; and the crew of the Fitter Ticker program: The Health Professionals at South West Health Care:

And The Ambulance Officers, all of whom played a large part in helping me rebuild my life.

Introduction

Cast in the theatre of life allows me to be part of an amazing production created by the universe called evolution. Fate has led me in many directions: A journey of achievement, failure, happiness, sadness, emotional joy, fear, frustration, and continual learning. One important lesson learnt: When the going gets tough; the tough get going. The script I follow is determined by the decisions I make and a confused society focused on material possessions and power: Health only becomes a priority when the damage has been done.

I describe my story as the calm before the storm. My body was a volcano fuelled by damaging life experiences and a lack of preventative measures. It was a matter of when it would erupt. 1991; aged 35, I found out I had a heart condition called Dilated Cardiomyopathy. Six months of rehabilitation allowed me to resume my normal life. I assumed I was cured and didn’t think any more of it.

Not taking heart disease as seriously as I should led to my health declining in 2008: I had a serious relapse in 2002. Cardiologists at The Alfred Hospital in Melbourne said I would need a Heart transplant, and was placed on a Heart Transplant waiting list. Defying the odds; my body fought back for a second time and was able to be taken off the list eight months later.

The uncertainty; and not knowing what lies ahead is what makes life intriguing. How my life has turned out is totally different to what I imagined. Following the crowd, I did what society dictated. I often look back on life and ask myself; What would I change? I would do one thing differently: Communicate better with myself and the people in my life. Communication; or more importantly, how we communicate, is the key ingredient to a fulfilling life.

Being given a second chance allows me to share my story with you. It is not my place to tell you how to live your life: My aim is to: Create awareness, help you maintain your health, and bring attention to organ transplant and the need for donors.

Life is a wonderful gift we all take for granted at times. There aren’t any perfect solutions to maintaining health because there are so many variables: Hereditary for example. There are proven techniques that can help, and techniques being withheld by a political system with misplaced priorities. I discuss what works for me throughout my story.

Our stories will be alike in many ways, and then totally different. My gift to you is a heart felt story proving one man/ woman can make a difference. Like my dad would say; It doesn’t hurt to listen; you don’t have to agree with what is said. If I can help encourage you to make healthy changes to your lifestyle to help maintain your health, that is a bonus. I want to scream from the roof top; Your health is your most important asset: Enjoy it and look after it.

Part 1

Think, Debate, and Act

Chapter 1

Life Throws Me a Curve Ball

A human being is a part of the whole, called by us universe, a part limited in time and space. He experiences himself, his thoughts and feelings as something separated from the rest—a kind of optical delusion of his consciousness. This delusion is kind of a prison for us, restricting us to our personal desires and to affection for a few persons nearest to us. Our task must be to free ourselves from this prison by widening our circle of compassion to embrace all living creatures and the whole of nature in its beauty. Nobody is able to achieve this completely, but the striving for such achievement is in itself a part of the liberation and a foundation for inner security.

(Albert Einstein)

The destiny of the universe is influenced by factors human exploration and science can only debate and will never totally understand; however, humanity, embarking on the pursuit of knowledge, has opened doors to evolution and limitless potential. Evolution is a chain reaction of events being in harmony with the universe. Every action creates a reaction; every event, planned or random, fulfils our destiny.

Life is a three-act play:

1. The past: History has guided you to where you are now.

2. The present controls the direction life travels.

3. The future, a journey guided by the universe, is determined by decisions from the past and present, reliant on strength of mind and body. When the mind or body fails, a life filled with hope and promise becomes a life wondering what might have been.

History is the foundation on which all decisions are made, and it will determine the decisions you make today and every day in the future. Every decision will have consequences no matter how trivial. I call it ‘the risk versus reward factor’. You are running late for work and don’t slow down at a school crossing: The risk is running over a small child, and the reward is getting to work on time. History determines why you were running late. You slept in—lost track of time talking on the phone.

Constructive debate, making decisions, and taking action when needed light the pathway to the future. Many decisions are detrimental to our health, forcing us to question our decisions: What if I had lived life differently? If only I had listened? Why me? Why did my heart fail? Why not me? is what I should be asking. Why is a powerful word. It allows us to question decisions that created life’s path. When my health failed, questioning why dominated my thoughts.

A universe, conducting the symphony of life, orchestrates every moment we live and breathe. Individual overtures enrich the rhythm and melody of the symphony. They echo harmoniously through the infinite spaces of the universe while travelling through time. The gift of life is the most amazing gift anyone can receive from the universe. Taking this wonderful gift for granted is something we are all guilty of, and it can lead to major health issues. When the body fails, the ability to maintain a chosen lifestyle is taken. That might sound like stating the obvious. I will continue stating the obvious to get the message across. Health is your most important asset and deserves to be treated with more respect.

Everyone is a candidate for health issues. Are your decisions leading you down the path of destruction?

Is the thirst for knowledge helping sustain human life or creating our demise?

Why do people rarely seek advice on health issues until it is too late? There are two reasons.

1. Fear of the Unknown

Not knowing reasons why holds us back in all aspects of life. There was a time when I feared how readers would respond to my story. I had critics before I began writing. Negative vibes, invading my thoughts, were overpowered by the reward of sharing what I wanted to say—I momentarily lost sight of why I am sharing my story: to create awareness and debate health and life, offering a perspective from the inside looking out. Creating awareness has been used for years with moderate success. Not finding out the reasons for my failing health has left my body in a vulnerable state. Had I confronted the fear and acted immediately, life would have been different.

The imagination in many ways controls our thinking and creates feelings and images that hide the truth and procreate fear. Facing fear means acknowledging the challenge and accepting the outcome. The mind spends a lot of time analysing a thought. If we fear the outcome, the tendency is to run and hide.

Fear of the unknown is what separates great achievers from average beings. History is blessed with achievements that words rarely do justice. Astronauts are sent into space. Overcoming fear of the unknown with his or her bravery and foresight is creating a path leading far and beyond our planet.

Fear of the unknown is relevant to health. Medical science has made enormous leaps because scientists and medical professionals put fear aside, leading medical exploration into the world of the unknown. Medical science has opened doors for patients facing life-threatening health issues. Many of these cases could have been prevented if people had acted when symptoms first appeared. Fear of the unknown is why people don’t act immediately when symptoms are first encountered.

The body, through symptoms, relays a message to the brain that a problem exists. The brain determines what should be done. If the brain fears the diagnoses, it can choose to hide from the problem rather than face it. When the problem becomes serious, the brain takes steps to deal with it. By that time, the situation can be critical and life-threatening.

Throughout the journey, I will debate issues that have directly or indirectly influenced my life and impacted my health. Read my thoughts with an open mind. Explore and analyse my thoughts. Criticise and question what I have written. What you do with the information is your decision. I can’t tell you what to think, how to act, and what to believe. Freedom of speech and the privilege of making choices are priceless possessions. I failed to speak up loud enough or often enough until it was too late. My inability to speak up contributed to my declining health and created issues where none existed. This scenario can be summed up in one word: communication.

2. Failure to Communicate Effectively

Talking about my health is the biggest challenge I faced when it failed. Not speaking out created many unwanted issues. I am in the trenches daily fighting a battle against an enemy I can’t see or hear. The enemy attacks without warning, turning my body into a war zone. Health has plagued me since I was born. Years were spent going through my daily routine, not knowing what was brewing inside. Two words ‘dilated cardiomyopathy’ reinvented my life.

Read my story, then step inside my shoes, and try and imagine your life being taken over by poor health. How will it affect your life? Understanding my story means imagining what it would be like having a carefree life stolen and replaced with a life wondering, ‘Will I wake up in the morning? Will I drop dead on the street today? My heart can stop beating at any moment.’ You don’t get told you need a heart transplant for no reason. The more I learn about my condition, the more frightening it becomes. The more I learn about the research being conducted and options available to me, the more at ease I am.

Scientists and researchers, using courage and an open mind, have transformed medicine by pushing boundaries. Their persistence has developed cures for conditions that were considered incurable for centuries. The day will come when dilated cardiomyopathy and many other life-threatening conditions can be cured. For any of these advancements to evolve, it is important to trust and believe in those doing the research.

I place my life and trust in the hands of strangers daily, for example, health professionals. For many years, I took every word they spoke as gospel. Being naive and gullible, my trusting nature led to my deteriorating health. I was misdiagnosed four times. The lesson to be learnt: trust isn’t given, it has to be earned. Trust is governed by a dependence on others and is essential in all forms of human interaction. Building trust means the following:

1. Being open and honest

2. Being accountable for your actions

3. Being willing to compromise

4. Sharing achievements

5. Accepting responsibility for failure as well as success

6. Being a team player

7. Being punctual

8. Accepting the opinion of others.

Respect the Opinion of Others

Communication creates havoc with our emotions, putting a strain on the heart and other parts of our body. Communication creates unwanted issues with others because we don’t listen to what is said. In 2005, I joined a support group called ‘The Cardiomyopathy Association of Australia’. I spoke to a lady named Joan. Joan was helpful early on in the conversation. When I mentioned I was writing a book about my experiences with cardiomyopathy, her attitude changed. Joan became defensive and made it clear that the cardiomyopathy association may not endorse my book. I felt like I was invading her territory or domain. This is how the conversation went:

Joan: ‘Is the book about cardiomyopathy specifically or heart disease in general?’

Gerry: ‘Heart disease and health in general.’

Joan: ‘Any endorsement from the cardiomyopathy association would depend on the content of the book.’

My reaction to the conversation: ‘Why does the cardiomyopathy association bother to exist if that is their attitude? . . . I couldn’t care less if the cardiomyopathy association endorses my book… I don’t expect everyone who reads my story to agree with everything I write.’

Joan explained: ‘Another lady wrote a book on her experiences with cardiomyopathy. She used some unconventional methods to help with her rehabilitation. The association didn’t endorse the book.’

My silent response: ‘If that is the case, the cardiomyopathy association has a narrow-minded attitude.’ I couldn’t help thinking, ‘This is the attitude that kept us in the Dark Ages for centuries.’

My conversation with Joan is an example of jumping to conclusions without knowing the facts, sending me on a roller coaster ride of deep thought and changing emotion. An innocent comment was taken personally. The values of the cardiomyopathy association were criticised without understanding the facts. Hindsight tells me that I should have asked about the book to see why it wasn’t endorsed. My outlook may have been different.

I contacted the cardiomyopathy association to use it as an avenue to improve my health and better understand dilated cardiomyopathy, and am interested in the opinions they offer. I am also interested in other opinions that may help. It doesn’t bother me if the methods are conventional or not.

A Face in the Crowd

There are those who are born to greatness: Sir Donald Bradman, the greatest cricketer of all time; Elvis Presley, the king of rock and roll. Then there is me; but for a select few who know me, will go through life unnoticed. Like the majority, I am Mr Average and a face in the crowd who stands, applauds, and is inspired by the extraordinary achievements of others.

I can’t teach you how to reach the pinnacle of sport, music, or any chosen talent. Or I cannot motivate you to become an Olympic athlete or a heart surgeon. What I can do is help prevent your dreams from evaporating when chronic illness takes control of your body. Using my experience as tools, I will help prevent you making the same mistakes I did. My story is about survival, the will to live, and what can be achieved when faced with the greatest challenge of all—cheating death.

Let me introduce myself. My name is Gerry Delwig. In October 1991, aged thirty-five, I discovered that a heart condition called dilated cardiomyopathy had ruthlessly invaded my body. The three symptoms I noticed were mild chest pain, acute shortness of breath, and constant fatigue.

What is dilated cardiomyopathy?

Dilated cardiomyopathy is a condition that enlarges the heart making it weak and thin. The heart isn’t able to pump blood through the body properly. Fluid builds up in the lungs and they become congested, causing breathlessness. This is called left heart failure. There is also right heart failure. Right heart failure allows fluid to accumulate in tissues and organs, for example, the legs, ankles, liver, and abdomen. The heart loses the strength needed to pump blood through the body, resulting in more blood remaining in the heart after each beat. The excess blood remains in the heart’s lower chambers (ventricles). The ventricles expand; over time, the heart muscle stretches out of shape (dilates) and becomes weaker.

My internal organs were drowning because of the dilated cardiomyopathy. This is when problems start. That’s the bad news. The good news is that, in many case, dilated cardiomyopathy can be treated with medication and lifestyle changes. A heart transplant will be an option if this method of treatment is unsuccessful.

When broken down, cardiomyopathy means:

CARDIO—heart; MYO—muscle; PATHY—disease.

In January 2002, doctors told me I needed a heart transplant, and I was placed on a heart transplant waiting list. It was suggested I would only live 12-18 months without it. With the help of medical intervention and hard work on my part, my body showed significant improvement. Eight months into my rehabilitation, and defying the odds, my health improved enough to be taken off the transplant list—an enormous achievement given the state of my health.

Heart transplant became an option 3 December 1967. The first transplant was performed in Cape Town, South Africa, and was performed by Dr Christiaan Barnard (1922-2001)—Louis Washkansky (1913-1967), a fifty-three-year-old dentist, was the patient. Washkansky had incurable heart disease and diabetes. He faced certain death without the transplant. The transplant operation lasted five hours. Washkansky survived eighteen days. Life expectancy after a heart transplant is increasing. People are now living over ten years—Denise Darvall (1943-1967) was the heart donor. Denise died in a car accident when she was in her mid-twenties. Her heart wasn’t damaged.

A heart transplant is an option when a heart is irreversibly damaged by long-lasting heart disease or viral infection. People with long-term heart failure, heart muscle disease, and heart injury, who are at risk of dying and cannot be treated by any other medical or surgical means, can be candidates for a heart transplant.

In 2011, organ donation is a topic people have a tendency to run and hide from. Australia has one of the lowest organ donation rates in the world. 25,000+ Australians have received organ transplants during the last sixty years. Survival rates have improved dramatically, offering recipients a high quality of life. The transplant option is supported by the majority, yet a lack of donors takes the option away.

Time is the crucial factor when placed on a transplant list. Transplant only becomes an option when all else fails. The decision to donate organs is a difficult one. Discuss it thoroughly with your family. If you are having difficulty, look at it this way: If you or someone close should one day need a transplant, would you like to believe other people have offered to donate their organs to help you?

Organs that can be donated: the heart, kidneys, liver, lungs, and pancreas.

Tissues that can be donated are corneas, skin, bone, and heart valves.

Everyone fights a personal war with health. The only variable is the type of health condition. Inner health is being attacked by cigarettes, alcohol, junk food, drugs, lack of exercise, stress, and family gene. The body will defend the attacks for a short time. The