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My heart transplant

By Kieran Sandwell

There was never going to be a good time to get the call but this one was particularly poorly timed as we were due to move house that day. I was to have a new heart and a new house on the same day.

My consultant at the Brompton first mentioned that I would need a transplant in 2005, as previous surgery for Transposition of the Great Arteries (1974), a bout of Endocarditis (1977) and a subsequent heart attack (1984) had left my heart so damaged that no more surgery could be considered. My right ventricle had become severely dilated and he told me that it would continue to deteriorate over time. After a year of various tests at the Brompton to see if I was a suitable candidate for transplantation, I was referred to Papworth Hospital in November 2007 for a transplant assessment.

The assessment lasted for three days and consisted of a cardiac catheterisation, a blood test, an X-ray, ECG, echo and an exercise test. After all these results were back, I saw the consultant and the surgeon and with my overall cardiac output at 20%, I was offered a place on the transplant list. I decided to decline the offer as I needed some more time to think about it.

Was I ready to put my body through surgery? How long could I carry on with my current heart? Was my quality of life so bad? It was such a tough decision if I was ill in hospital it would have been an easy decision to make but I was still able to potter around and that made it harder to decide.

It was soon becoming very noticeable that my heart failure was getting worse. Everyday activities like showering and dressing were making me so tired and breathless. At Papworth, both the surgeon and consultant informed me that I probably had five years to live but with a reducing quality of life and frequent stays in hospital. By having the transplant, they could give me a greater quality of life. It started to become an easier decision to make.

It was six months later, in July 2008 that I went on the active transplant list. Whilst waiting, I was fortunate to remain fairly well and tried to stay as fit as possible. 'The fitter you are going into an operation will help the recovery time', I was told. So I made myself go for a small walk everyday and eat healthily. After a few weeks on the list, I got used to the phone ringing and not jumping. It was only ever the late night calls that made me think of Papworth. During my time on the list I had two false alarms where the donor heart ended up not being good enough and both these occasions left me feeling initially numb but ultimately relieved that it would only ever go ahead when a good one arrived.

On the morning of the third call, I had a five hour wait at Papworth while they tested the donated heart, took blood from me for testing compatibility and checked to see if I was well enough to get through the operation. When I was told that it was to go ahead I had less than ten minutes for phone calls and hugs. I remember a big grin coming over my face as they wheeled me to theatre and a wave of calmness came out of nowhere as I lay on the table. This was not how I had expected to feel at that time. Maybe it was relief that all the problems of the last ten years, when my heart had been deteriorating, were finally about to be sorted out.

Apparently my first words after coming round were "I don't feel very well". A bit of an understatement if ever there was one. "What's for dinner?" and frequent food enquires followed over the next twenty-four hours. It was then that complications followed where my left lung was not inflating properly. For nearly forty-eight hours, I had a pressurised mask fitted to my face to force air into my lungs. This was the darkest part of my recovery because I couldn't see very well; I couldn't hear anything over the noise of the machine; I couldn't sleep and worst of all, I couldn't speak. During the night, I needed some positivity so I thought of some of the wonderful, inspiring people I have met through GUCH PA and questioned, "How would they react to this?" The answer was simple. They would grit their teeth and get on with it - so I did.

After two days the 'Hannibal Lecter' mask came off and things started to look better for me (and everyone looking at me!). Each day saw an improvement and my lungs soon made a complete recovery. Two and a half weeks after the operation, I left Papworth to begin the long process of getting fit again. It was only then that I realised how ill I had actually got with heart failure. I was amazed that after just four weeks after the operation I went on a five mile walk and after seven weeks I went for my first run in over twenty years! The difference was incredible and I am so grateful to the magnificent team at Papworth for their skill and expertise and also to my donor for their amazing gift.

I donated my old heart to the Brompton Hospital for research into GUCH medicine. My consultant told me afterwards that it is fairly rare for a GUCH to have a transplant in this country but that it's likely that more and more GUCHs will need a transplant in the future. With a limited number of organs available and an increasing GUCH population, I feel it is so important that we try to promote the Organ Donor register as best we can by talking to friends and family and anyone else we know about joining the register. With thirteen units of blood and one donated heart, I feel very humble that fourteen strangers saved my life that day and I will try to live my 'second life' as best as I can.

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