Toucans, Souks and Saqqara

Toucans, Souks & Saqqara

Journeys with my hearts

Liz Wilson

SMASHWORDS EDITION

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Toucans, Souks & Saqqara

Copyright © 2011 Liz Wilson

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior written permission of the publisher.

The information, views, opinions and visuals expressed in this publication are solely those of the author(s) and do not reflect those of the publisher. The publisher disclaims any liabilities or responsibilities whatsoever for any damages, libel or liabilities arising directly or indirectly from the contents of this publication.

A copy of this publication can be found in the National Library of Australia.

ISBN:  978-1-742841-46-5 (pbk.)

Published by Book Pal

www.bookpal.com.au

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Foreword

My husband, Ray, died after a very short illness on 9 January 1996. Nine of his organs were transplanted; Liz received his heart.

Transplant patients are not allowed to have any information about their donor, but they are allowed to write, anonymously, to the donor’s family. I received four or five ‘thank you’ letters from organ recipients. Liz, I found out later, wrote one of those letters.

Two years later, I was still having difficulty coming to terms with Ray’s unexpected death and getting on with my life. Meeting Liz at a thanksgiving service at St Andrews Cathedral was, I believe, no accident. A force much stronger than both of us drew us together. She was able to give me peace and hope, things not even my loved ones could give me during this very dark period in my life. Through her, I was able to find the peace I so greatly desired and the hope that life goes on, even though, at times, we just want it to stop and set us free. I will be forever grateful for the friendship and peace I found through Liz.

This book is her story, from the time she was diagnosed as a diabetic at the tender age of eight years. How she has lived with diabetes, managing a career as a teacher and travelling overseas as much as possible. She has done nothing by halves. Although I did not meet her until 1998, her friends tell me she was an exceptional and dedicated teacher, influencing countless young lives. And she has travelled to places where most of us would hesitate to go, even without the complications of travelling with diabetes.

It is the story of a bright mind and an adventurous spirit – of courage, determination and survival, despite the odds. It’s a story that needed to be told and is a must to read. And woven into this story is a beautiful heart – the heart of a wonderful man, a son, a father, a brother, and a much loved husband, who chose that his heart would go on living through another when he could no longer use it. That heart belonged to Ray, and his gift continues to beat long after his departure from this world and the people who love him.

Carol

15 March 2011

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Acknowledgements

In writing this book, I am greatly indebted to the assistance given to me by the following people from St Vincent’s Hospital (Vinnies) – Professor Peter Macdonald, cardiologist; Dr Jerry Greenfield, diabetes specialist; and Frances Taylor, previously head of Social Work. Each has proofread the appropriate sections of the book and checked the accuracy of my medical comments.

I would like to thank Professor Anne Keogh, cardiologist; Associate Professor Chris Haywood; and diabetes specialist Professor Don Chisholm – all also from St Vincent’s Hospital – for keeping me alive throughout the last 15½ years. It has been quite a challenge for them and they are due every accolade.

I would especially like to thank my donor’s wife, Carol, and her daughters Emily and Katie. I value their friendship, encouragement and great support immensely, and particularly so during the writing of this book.

Also, I would like to thank my wonderful friends (especially Val, who has been willing to drop everything to get me to appointments) for their encouragement and support throughout my life and during the writing of this book; and Helen Grant, Val, Diana, Keg, Michelle, Saxon, Carol, Rosie Stevens and Cathy and Hans Beilharz for their ‘stories’, recollections and photographs.

I would like to acknowledge the encouragement and assistance of Alison Barnwell of the Australian Red Cross, who provided materials from previous transplant thanksgiving services.

Lastly, but certainly not least, I would like to thank Kerry Chater (Keg) who has been a friend for many years. She encouraged me to write this book, assisted me and solved many problems I have encountered along the way, and finally edited my efforts. We have worked on the book at my place, her place, her family’s beach house and even at Vinnies. I sincerely appreciate her enormous efforts.

Keg working with me on the book at Vinnies, April 2011

Although I have received much expert feedback and help along the way, I take full responsibility for the contents of this book. It is my story, and my interpretation of events. I have also used material available on the Internet, especially Wikipedia, to check and update my own information.

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Contents

Transplant surgery

Living with diabetes

My life changed when I was eight

The inspiring story of a remarkable Australian

Career knock-backs

Teaching becomes an option

My approach to teaching

My first overseas adventures

Leaving Australia

Disembarking at Panama

Theatres and volcanoes

Meeting and fleeing from the Waynes

Thumbing across Canada

Overland through Asia

Istanbul – bazaars and hamams

Ancient Persia and caravanserais

Tehran and the Shah’s birthday

Afghanistan and Kabul in 1976

Crossing the Khyber Pass

Starting to experience the side-effects of diabetes

Tendon damage

Stabbing nerve pains

Almost losing my sight

Gout

Tissue damage from injections

A non-diabetes related accident

Returning to the Middle East

Saqqara – tombs, pyramids and camels

En route to Petra

The rose-red city of Petra

My heart fails

An undiagnosed heart attack

Major heart attack

The chance of a new heart

Transplant criteria

My assessment process

Support of the heart transplant team at Vinnies

Near-death experiences

A new heart

Living with a new heart

Drug therapy following transplant

Medications

Side-effects of drugs

Lack of immunity

Regular out-patient hospital visits

Time spent in hospital as a patient

Adjusting to a new heart

A special occasion

Tutoring as a ‘fill-in’

Travelling with a new heart

My darling Eli

Choosing my puppy

The power of Eli

Like owner, like pet

Eli receives a carer’s award

Meeting my donor’s wife

Confidentiality of donor information

Thanking my donor’s family

Meeting my donor’s wife

A beautiful friendship develops

Back on the road again

Lost in the souk

Mardi Gras in Rio

Iguazú – the Devil’s Throat, toucans and macaws

Cruce de Lagos (Lakes Crossing)

Patagonia and the Andes Mountains

Transplanted heart failing

Another heart attack

A near fatal angiogram

Postponed trip to Canada

An amazing milestone

The future

Postscript

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Introduction

Today is the first day of the rest of your life.

Make the most of it.

For years people have been telling me that I should tell my story, that it would be inspirational for people like me who have to live with serious health complications such as diabetes, transplantation, or any other serious illness.

Until now I have always found reasons not to document my life, not least of which is that I am not a skilled writer. But last year it all changed. It became clear to me that my transplanted heart was failing and the doctors were running out of options, while at the same time a friend (Keg), who is a writer, offered to help me put my story together.

The journeys through my life fall into two distinct categories. Some I yearned to do. Others I had to do because diabetes and all its complications was the lot I was handed in life.

My life was normal until I was eight, whatever normal is. But from the time I was diagnosed with type 1 diabetes, my life changed dramatically. From that time on, my everyday existence was monitored and restricted. Daily injections of insulin were a dreaded early morning ritual. My food intake was controlled. Even my daily activities were supervised and controlled. All this is difficult enough for an adult to cope with. For a child it is horrific. And things did not improve as I grew into my teens. I did not cope well with all the limitations placed on my life. I felt shackled, and yearned for freedom.

The problem was that I could, and still can, suddenly lose consciousness. I needed to learn how to cope with and manage my diabetes, and live with all the difficulties it presented.

At the age of 12, even though I knew there would always be restrictions on what I could do, I made a conscious decision to live life to the full and to do as much as I could in my life. I felt it was far better to have a shorter life, full of adventure, than to have a longer life, taking no chances. I didn’t want to just ‘exist’. I felt then, and still feel today, that life is to be lived. I wanted, and still want, to make the most of every moment.

I found this quote from the film Steel Magnolias recently, which sums up my philosophy of life perfectly:

‘I would rather have 30 minutes of a wonderful life than a lifetime of nothing special.’

Because I had been so restricted when I was young, always being told I couldn’t do this and couldn’t do that, I decided to prove them wrong. I immersed myself in history, and planned things to do and places to go in the future. I wanted to travel the world and see and learn as much as I could.

Some of my travels are included in this story to show that it is possible to have wonderful adventures, even though your life is restricted in many ways. The key is knowing yourself and exercising careful management and self-discipline.

The side-effects of diabetes gradually became apparent. Firstly tenosynovitis, followed by neuropathy. I nearly lost my sight through retinopathy in 1978 and then in 1994 my heart failed. My life was saved at this point through a heart transplant operation. This story tracks some of these forced journeys, including living with transplantation.

The wonderful support I have received from the doctors at St Vincent’s Hospital, Sydney (Vinnies), has been amazing. The transplant cardiologists, Professor Anne Keogh, Professor Peter Macdonald and Associate Professor Chris Haywood; and the diabetes specialists, firstly Professor Don Chisholm and then Dr Jerry Greenfield, have saved my sanity and my life on many occasions. Without them, I would not be here and I am greatly indebted to them.

My other saviour has been Eli, my toy poodle pup. She forces me to walk and to stay fit; she insists I eat at regular times; and she can always make me smile, no matter how down I feel. She entertains everyone at my regular visits to the heart transplant and diabetes clinics, and is loved by all who meet her.

I am also greatly indebted to my donor’s wife, Carol, who gave me the wonderful gifts of life and friendship, keeps my spirits up, and has given me the opportunity to share in her life.

The title of my book reflects three (of the many) things I’ve experienced and loved in my travels – the toucans (birds) of South America, the bazaars or souks of the Middle East and Northern Africa, and the step pyramid at Saqqara. Each of these has enchanted me and inspired me to continue adventuring and searching out new experiences.

The cover represents my Smarties. I have added one Smartie each day to my collection since reaching the five-year mark with my transplanted heart. Believing I would have no life past 5 years of transplantations, each Smartie represents an extra day of my life.

This book is dedicated to my mother and all the other saviours in my life. I also hope that, by sharing some of my journeys through life, it will reassure, encourage and perhaps even inspire others who are forced to live their lives, like me, with the added complications of illnesses like diabetes, organ failure or any other serious health issues.

I would particularly like to assure those who become afflicted with diabetes that it does not cancel out their future. Yes, diabetes makes it much harder, and the challenges are huge, but most worthwhile things take longer, and the joy of living your dreams is immeasurable.

I firmly believe that we can achieve anything we really want to. So go for it. See and try and feel and do as much as you can in your life, and make the most of it.

Liz Wilson

10 March 2011

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Transplant surgery

The phone rang as I walked in the door. It was 7 p.m. on 9 January, 1996, and I had been at White City all day, watching the NSW tennis championships with a friend, Val.

Keg, my friend and my carer over the past few months, picked up the phone. She listened briefly, then passed it to me, saying ‘It’s the Red Cross for you’. I put the phone to my ear and said ‘Liz Wilson here.’

‘We think we have the perfect heart for you.’ The caller – I never knew her name – told me to go to the Emergency Department of St Vincent’s Hospital (Vinnies), and to be there by 9 p.m.

No more was said.

I was speechless. This was the call I had been waiting for. Strangely, it had come to the home phone, not to the pager I had been wearing every day since I was placed on the transplant list the previous October. I knew that a call could come at any time of the night or day. There is a limited time frame to remove, transport and transplant a donor heart, so time is critical.

I had been on the transplant list for less than four months. I was one of the lucky ones. Some people wait for years; some never make it. But I also knew that transplant wasn’t a golden bullet. Even after transplant, the risk factor remains great, and many recipients don’t survive for long.

This was the end of one stage of