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Just a routine check-up?

Many GUCHs experience the best of health, with only annual check-ups reminding them of their heart condition. So it can come as a shock when a routine ECG reveals the need for surgery. When this happened to lawyer Alex Perkin, he found talking to fellow GUCHs immensely helpful - and that being in denial about his surgery was not unusual.

As I type at my laptop, basking in the summer sunshine, the events of last year seem a distant memory and I am now yet another GUCH who has benefited from 'elective' surgery -- i.e. I succumbed to the scalpel, rather than allow the situation to reach an unpleasant conclusion.

I'd had a couple of holes closed and my pulmonary valve widened at London's Great Ormond Street Hospital when I was six. But the only reminders were the faded scar on my chest -- so no showing off, unlike when I was a child and the scar guaranteed me 'celebrity' status in the playground! -- and annual check-ups at London's Middlesex Hospital. The check-ups provided an excuse for a day of window shopping in the West End. I never gave them a second thought, as I was too busy enjoying my life and pursuing a legal career. Until May 2003 the appointment that left me feeling as if I had been hit by a bus!

As I was undergoing an ECG the man monitoring the machine became rather excited. Five minutes later I was undergoing an echo scan. I was then told that my pulmonary valve was leaking and my heart had become enlarged due to the strain involved in beating harder to compensate for the leak. I was advised I would have to undergo surgery to replace the valve and that a human donor (homograft) would be the most suitable match, as opposed to a mechanical valve. If I allowed the condition to remain my heart would continue to increase in size until it would no longer function.

Although my original surgery had been successful, the pulmonary valve had always been susceptible to further 'wear and tear'. Until last May I hadn't appreciated that I may require further surgery. Whilst valve replacement surgery is not unusual I was still shocked to realise that I had a reasonably serious heart condition which required open-heart surgery. I could not see beyond the operation. Other GUCHs I have spoken to describe the experience as being in 'Limbo'. Literally speaking, that's the borderland of Hell!

I worried about waking up during the operation, not waking up after the operation (!) and whether or not my memory would survive. The thought of having to relearn all those cases and statutes that I had been taught 20 odd years ago at law school did not appeal (no pun intended). My overriding concern was whether or not, after surgery, I would be able to pick up my life where it had left off.

At work. I decided that honesty was the best policy, albeit on the understanding that only my boss and the personnel department were made aware of the situation. I told my Mother and Stepfather, but nobody else until I had an admission date. With the benefit of hindsight (which can be a cruel friend), and having spoken to other GUCHs, I think that during my period in limbo, I was also in denial. After all, so far as my friends and colleagues were concerned. I was healthy and relatively successful. It was not easy to admit to my heart problem, which I perceived as a weakness.

When I got my admission date (December 1st), I felt incredibly relieved that the waiting was over and I could tell my friends about the upcoming surgery -- though it came as a shock when several female friends burst into tears on hearing the news! If you're a fan of Sex & the City, you will know that Carrie did the same thing when Big announced his heart op - I just didn't expect it to happen to me!

The last week of November was bedlam. There was so much to organise -- cover for my caseload at the office; cleaners for the house (difficult to push a vacuum cleaner when your sternum has been cut in half and is healing!); a new Will to write (ever the optimist!); trips to the supermarket to purchase every conceivable household item (no driving for a couple of months after surgery and no internet supermarket delivers to my village in Wiltshire); Christmas presents to buy and wrap (limited mobility for the first month after surgery); a DVD player to buy (and endeavour to operate!) so friends could send DVDs for me to watch during my convalescence (they fit easily through the letterbox), books to buy etc.

The operation was successful and I only spent eight days in hospital. Although London's Heart Hospital is a world leader in coronary care, and the expertise quite incredible, it was a relief to leave. Six months after surgery I am fit and well and have resumed a 'normal' life. I am driving, cycling, socialising, running the house etc. I returned to work in mid-March (three days a week for the first couple of weeks, but now full-time) and am planning my first holiday in over a year (hooray!).

The new pulmonary valve is expected to last for 'at least 10 years' (fingers crossed, a great deal longer). I admit that I have not fully come to terms with the fact that I will require further surgery in the future, but I have returned to a regime of annual check-ups; so it will be window shopping followed by, hopefully. a healthy ECG!

One area of great support has been this website. It makes a world of difference being able to speak to somebody about your condition/predicament who understands and, perhaps, has first-hand knowledge of your concerns and fears. Friends who have not undergone open-heart surgery, or who do not have a congenital heart condition, cannot be expected to understand the problems you're facing. I certainly benefited from contacting a couple of people via the Message Board who had undergone similar surgery. Their guidance, support and suggestions were invaluable, both during my time in limbo and my convalescence.

In my experience, GUCHs are very happy to share their thoughts and feelings, and offer constructive guidance. I can't thank them enough for that.

Printed in GUCH News - Issue 40, Summer 2004

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