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The Fall and Rise of a GUCH

By Diana Sanders

What does a GUCH call herself when the congenitally offending parts are in a jar of formalin? An GOBNULCH - Grown Up but No Longer Congenital Heart; a TRANSGUCH? More to the point, how does such a creature celebrate one year following a heart and lung transplant? Jetting off to the sun for a week of pampering? Throwing a big party? No, my year's anniversary found me and my husband, Mo, sweating around London with a bunch of GUCHs (PONGGUCHs?) on the annual sponsored walk from the Brompton Hospital to the Heart Hospital and back to the Brompton, walking with ease, arriving back with little more than achy legs and a great sense of pride. One year ago walking across a room was almost beyond me and my idea of a workout was making a cup of tea. Here's how I got from there to here.

I was born with Eisenmenger's syndrome - anatomically corrected transposition of the great vessels with a ventricular septal defect and pulmonary hypertension. Like many other people with such heart conditions, I was also born stubborn, and refused to 'give in' to it. I preferred to find ways of quietly managing my limitations, mainly expressed as difficulties with hills and stairs, breathlessness, tasteful pink-blue tinge to the lips and extremities (the Biba years were a delight to me - could achieve the look without bothering with the lipstick). I simply got on with my life, and generally refused to believe anything the medics told me. Having been born in the 1950s rather than the 1990s, no surgery was available. I was assessed for surgery in my 'teens, but it was thought to be too risky. Luckily, neither family nor school made too much of a 'fuss' of me or wrapped me in cotton wool, so I was able to enter into most of the rough and tumble of life. I was very committed to looking after myself, and took up regular yoga and swimming, which I think helped me to keep going as long as I did.

In my late 30s and early 40s, I began to slow down but still managing to work as a psychologist in the NHS, and enjoy a busy life. In 1995, I began to have the first real problems associated with my heart, developing atrial fibrillation, and having several emergency admissions for cardioversions. The arrhythmia's were generally well controlled with amiodarone, and life went on, albeit at a slower pace. I was assessed for a heart and lung transplant at Papworth hospital in September 2000, but thought at that stage I might have another five years before I needed surgery - I was still working, swimming four times a week and generally 'too well'.

It turned out to be more like five months. At the beginning of 2001, I had the usual run of colds and coughs, but sadly did not pick up as usual afterwards, and started to experience extreme breathlessness and exhaustion. I was then recommended to stay on oxygen all the time, and have the transplant as soon as possible. I took some time to come to terms with all this, and to decide when to go on the active list for a transplant. Unlike some people waiting for transplants, Eisenmenger's syndrome is not necessarily an immediate threat, so I had some time to make up my mind - balancing the risks of surgery (one year survival rates of between 75 - 90 percent), with the risks of waiting longer.

I finally went on the active list for a donor in October 2001, and then my husband Mo and I had to sit back and wait for the call. It was a very strange time. I was very limited, and had to have oxygen most of the time - we had concentrators in the house and small cylinders when we went out. I felt pretty exhausted, but was determined to keep going - friends and family came to visit and took me out in my wheelchair, I did exercises to try and maintain some fitness, and I continued with a small amount of work, finishing writing a psychology book I'd been working on, and learning Greek to keep my mind busy.

I always wondered what I would do and feel once 'The Call' arrived. Would I be terrified, see my life flash before me, phone everyone to say goodbye and wish me luck? Would I feel prepared, bags at the ready? The phone went at ten to nine on Saturday evening, 8th June 2002, just before the end of Casualty. All I felt was annoyance at having to miss the end of my programme in order to get my instructions from Helen, the transplant co-ordinator. I know as a psychologist that, facing a trauma, it is important to keep on 'processing' what is going on, use active coping strategies and so on. All that went out of the window as I settled into a state of blissful dissociation and denial, everything happening in a dream around me. I did not feel anxious at all. That came later. I did, however, phone Jacky, a dear friend who lives near a wishing well, asking her to throw in some coins for me. She cycled up there at midnight and said her wishes, which obviously worked.

The next few weeks and months were a long, slow haul through the operation and the process of recovery. The operation took 8 hours or so, and was a complete success - the donor was a very good match for me and I did not experience any problems with rejection. I spent two days in intensive care, which I have some brief memories of, and just over two weeks on the ward. Then, back home to start to rebuild my new life. For the first three months, I had to take a huge amount of medication - about 39 pills a day at its maximum. I've never been one to take much medication, preferring to use homeopathy and acupuncture, and I have a terrible tolerance of medication - so experienced terrible sickness and nausea for about four months after the operation, requiring two further admissions. How I got through that time I do not know, but somehow Mo and I crawled through, with a lot of help and support from friends and family. Although I'd been very prepared for the transplant I was unable to feel pleased or grateful for several months, indeed regretted it at times. But, however bad I felt or how difficult I was finding the recovery, I was always aware that I was alive, whereas my donor was not. Last summer, someone, somewhere, who had been thoughtful enough to stop and sign a donor card, and get put on the register, had died suddenly, tragically and unexpectedly. That person gave me a new life, and did not have a choice of keeping theirs. The gift of a new heart and lungs is an amazing responsibility, and one that I intend to take seriously.

It is now one year later. I am able to do things I've never been able to do in my life, walking, running, managing hills and stairs, and generally zooming around. I am getting a taste of what it is to be 'normal' with the added bonus of appreciating all the things that GUNOHs (Grown Up Normal Hearts) take for granted. It really is a true transformation. But high maintenance. There is the medication regime to take care of - down to a mere 21 pills a day now, 12 different medications, in two doses a day. And regular visits to Papworth to check all is running smoothly. No hardship, since the shopping mecca of Milton Keynes is on our way home from Cambridge.

When I was on the waiting list for the transplant, I would dream of all the great things I would do after the operation. Run the marathon; climb mountains; work full time again and have a brilliant career; travel the world. Now, I realise what the transplant means is all much simpler. It means each day my great plans are to wake up, to breathe, to enjoy posting a letter, popping to the shops, being able to do a day's work. Sit in the garden with Mo, and watch our garden grow, knowing that I've done the digging and weeding. Being able to walk eight miles was a miracle. So is running up the stairs to collect something I've forgotten before going out. Maybe the future will find me doing serious training, entering fun runs and going for long hikes in the mountains. But, for now, having been through the transplant and come out the other side, younger and wiser, I've done the marathon.

Printed in GUCH News - Issue 39, Spring 2004

Diana's Book "Will I still be me?", is available from Amazon
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