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I Did it My Way!

By Isobel Watson

Reading the letters and articles in GUCH News has had a profound effect on me. Many of the traumas and frustrations echo with all of us with a congenital heart disease, as do the many side effects on the lives of both the GUCH and those that love and care for them.

During the war years, when life was hard for everyone, those of us born with a heart condition had no life expectancy. Surgery was almost unknown, and treatment nil. In those days without cars and conveniences how did our mothers cope I wonder? My own memories of this time are of rationing and queues, wondering all the time why my legs would not hold me up, calling 'Carry me' to my tiny mother, who always did. Sometimes it was too late, and unconsciousness occurred, then I remember the sips of brandy, which was the only reviver at that time. School was the next trial, but at least I had lived to get there. No games or gym, but books were a treasure, and any kind of board game or cards. A wheelchair was necessary to get about anywhere, and how I hated it, and was so ashamed. People shouted at you as if you were deaf, or behaved as if you were not there. Even worse, as if you were mentally disabled as well as physically.

Despite all of this, life was happy, with a loving family, and many outings and treats from grandparents, aunts, uncles and cousins. I had no idea I had a bad heart, these were the days when children were not informed, and it was thought better not to discuss these things. Hospital visits were a much-dreaded part of the routine, being undressed before strangers, handled and asked questions of which there was no understanding.

Then one day when I was nine years old, an ambulance came, took my parents and myself to Glasgow, where I was to be in hospital for a while. It was over 100 miles away and my parents could only visit once weekly. They were permitted to stay for an hour. The ward was huge and I was the only child. I screamed for my mother and fought the doctors and nurses till they despaired, but eventually I knew that it was in vain and became quite institutionalised over the 6 months stay. The treatment was by today's standard primitive, but the surgery by those dedicated people, without benefit of heart and lung machines, saved my life. It was not a cure though. I left the hospital a much-changed child, with buried traumas, which I told no one. I suffocated the memories, and have been all of my life a rebel against authority because of my experiences there.

As the years passed, I coped with school in spite of many absences. At 15 I refused to go there any more, and worked as a clerk in a local office. There were still fainting spells and lots of illness. All my teeth had to be removed because of infection. At 17 this was both humiliating and painful. However I still managed to attend local youth clubs and dances, and loved socialising more than anything else, except perhaps books. By the age of 22, in 1966, it was obvious that work was no longer possible and I knew I was fooling myself about my illness and life expectancy.

At this point I met my husband. He has been the rock, support and inspiration for the rest of my life. Without his optimism and refusal to believe that I could not be helped, I might have left it too late. After much thought I saw a specialist in Edinburgh who agreed that an operation to surgically repair Tetralogy of Fallot would save my life. I waited a year for this operation, during which time we were married so that whatever the outcome we had time together.

The surgery was a total success; I gloss over the details because those who may read this know what it entails for oneself and family. Compared to my childhood experiences it was easier anyway. The next two years were heaven, to walk as much as I liked, to go to dances and participate at last. We enjoyed touring holidays in the Highlands, and we just did everything. In 1970 we had a beautiful healthy baby daughter who has been the joy and focus of our lives.

Over the next years I suffered bouts of Paroxysmal Tachycardia, the second of which was near fatal. This was the start of life with medication. It took a year to stabilise, during which I was acutely depressed, and given tranquillisers and anti-depressants. These were my 'happy pills'. With those inside me I could cope. We had a nomadic life in the forces and I managed the travelling, the moves, and the constant adjustment with the aid of 'little red monsters in a bottle'. Nobody ever said that perhaps they could be stopped. When I asked they said, "No, just keep taking these, they will do no harm." Now I know that I was incapable of deciding for myself, as they take your will away. Life just went on. During these years, we lived in three countries, travelled everywhere we could during our holidays, and reared our daughter. We were very happy indeed.

However in 1986, after 13 years of drugs without change, I became ill with heart failure induced by the use of anti-depressant drugs. These were all taken away, and I underwent withdrawal. 'Cold turkey' is the term, but for me it was 'Hot burning rage'. I had trusted doctors all my life and the over prescription of drugs almost killed me, and made my family's life hell for the next three years. Suddenly I had a brain, a will and a judgement again. After 13 years of complete lassitude, it was hard to live with. I suffered severe panic attacks, shakes, shivering and insomnia. Sleeping pills were prescribed, but after a while these also had to be withdrawn. During this time I learned to play a musical keyboard which saved my sanity, and studied for the 'O' levels I had missed. My daughter was also studying, and we helped each other. She helped me so much during this time with her love and support.

Returning to England, I took up a new career in my forties. This gave me back the lost self-esteem, which is all part of depression and rage. I had been prescribed Cordarone X tablets to control the tachycardia, these in turn eventually caused Hypothyroidism, and I will require thyroxin tablets always. After seven years of trying to convince my cardiologist that Cordarone was not suiting me, she was persuaded by my husband to send me to see Dr Jo de Giovanni. He agreed with me and helped me to withdraw from those also. He is a man in whom I have faith, when I thought I would never trust anyone again.

At 56 years of age I am optimistic that there is much still to enjoy. My life has been adventurous given my condition, and I intend to continue to live life as fully as possible. Although camping in the backwoods is no longer feasible, a caravan is just as much fun. I cannot dance, but theatre, music, and above all, my family and friends are life's bread and wine. God Bless my family, and human dedication to science which has given me my life. Like Shirley Bassey, I did it my way!

Printed in GUCH News - Issue 26, September 2000

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