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My Troubled Heart

By Jonathan Upton

I was born in 1967 with two congenital heart defects: Coarctation of Aorta (which is narrowing to the main artery from the heart) and a Bi-cuspid Aortic Valve (two-leaflet valve instead of the usual three). My CHD (Congenital Heart Disease) was not diagnosed at birth. During my childhood I was healthy and active. My parents had no reason to suspect that there was anything amiss with my heart.

To most people I appeared like any other fit and healthy teenager. I enjoyed swimming, cycling and walking. The only clue to there being a problem with my heart was that I would tire quickly and for this reason I disliked competitive sport. I remember finding school sports lessons very tough going and often used to get nagged at for not pushing myself. All this time I did not have a clue that there was a problem with my heart and neither did my parents. The only thing my parents did notice was that I would come home from school and rest a lot.

Then in the summer of 1984 at the age of 16, without warning I suffered my first blackout whilst out with a friend. I was rather frightened and embarrassed by the experience as this had never happened to me before and I did not understand what it meant. My GP saw me and checked me over and discovered I had an unusually high blood pressure for my age. Within a couple of hours I was admitted to my local hospital for tests. My heart condition nearly went undiagnosed even at this stage as most of the doctors put the symptoms down to exam stress. However, one of the doctors on the team, a senior registrar, heard a heart murmur and after some more tests it was confirmed that I had a Coarctation of Aorta and a Bi-cuspid Aortic Valve. I was referred to the regional centre for cardiac surgery for the area I live. When I was under the care of a Cardiologist I had an Angiogram and ECHO which revealed the details of the narrowing. I was seen by a Consultant Cardiac Surgeon and my name was put on the waiting list for heart surgery. Three months later in January 1985 I underwent successful surgery to repair my Coarctation. I did have a few problems whilst in hospital requiring further surgery and therefore my stay was longer than expected. Soon after being discharged from hospital I began swimming and was soon back on my mountain bike. I thought all my heart troubles were over!

Since that first operation I have remained very well and physically fit. I have even completed the London - Brighton cycle ride twice in aid of the British Heart Foundation. The ride was great not only from the point that I was able to raise a lot of money for charity, but it also gave me a personal sense of accomplishment. In 1993 whilst on holiday in the Caribbean I learnt to scuba dive and that too has made me feel great that I am able to enjoy such activities. I was approached by some other ex-heart surgery patients and asked if I would like to help set up a Cardiac Support Group at the Hospital - I happily accepted. In 1995 we launched the 'Heart Support Group' which is still running strong today. I had the privilege of being Chairman of the group for 2 years and made many friends.

It was not until about May 1998 that I really became concerned about my heart again. I was aware that I was getting breathless when using the stairs at my place of work. Also, I would become very fatigued doing gardening, and all the physical things that I was so used to doing, were now much more of an effort. I assumed it was simply that I had put on some weight and was just less active. How wrong I was. In August 1998 I was admitted to hospital and an angiogram showed my aortic valve to be severely leaky and that I also had two large aneurysms in my aorta! One was located directly above the leaky aortic valve and the other where my coarctation had been repaired 13 years previously. My cardiologist told me that the aneurysm to the coarctation repair did not need touching at this time and that it simply required an annual CT scan to check for growth (this was later to become a problem). I was told that I would need open-heart surgery soon for my leaky aortic valve and I cannot begin to describe how low and anxious I felt about the whole thing. I was very fortunate in that I did not have to wait long for the surgery as my employer provides PPP medical insurance.

On the 15th October 1998 I underwent a 5-hour open-heart operation in London. The surgery involved replacing my aortic valve with a mechanical one and removing the aneurysm located above the valve and replacing that section with a graft made from Dacron material. The whole experience was not as bad as I had imagined. I was in ICU (Intensive Care Unit) for 24 hours and then moved to the HDU (High Dependency Unit). I was in hospital 7 days in total. I have a neat scar down the front of my chest and a 'ticking' noise, which did take some getting use to. You would be surprised how many people have thought it was my watch! Within a few weeks I noticed an improvement in my health. Climbing stairs was easier and I would not be out of breath. I am taking a drug called Warfarin that thins my blood to prevent blood clots from forming around the valve, as it is man-made. I will be on Warfarin for the rest of my life, but it's no big deal - I simply take them at 6pm each day and go for my regular blood test to check the clotting time and required dosage.

Earlier I mentioned that the Angiogram in August showed two aneurysms and that the second one, located at the site of my Coarctation repair, did not need touching. Well, it did in fact need touching and had it not been for the internet and getting 'expert' advice I would not be here to tell the tale. At my last appointment with my cardiologist I again raised the question 'Will the aneurysm need surgery?' the answer came back 'No. You do not need further heart surgery - just monitoring'. I was not satisfied with what I had been told as I knew how large the aneurysm was and just had a feeling that my current cardiologist was not being truthful with me about my condition. So, I set about doing some research and began using the internet at home and soon located a website in Canada for Adults with CHD (Congenital Heart Disease), I came across some information that actually related to my condition and the formation of aneurysms. I was quite concerned to say the least. I emailed the webmaster who is a very respected GUCH Cardiologist in Toronto. I explained in some detail about my condition and what surgery I had recently undergone and about the other aneurysm and the advice given by my cardiologist. The next morning I received an email from the Canadian Cardiologist strongly advising me to get a second opinion and recommending Dr. Somerville at the Royal Brompton Hospital, London. A few days later Dr. Jane Somerville saw me. I was told by Dr. Somerville that I did indeed have an aneurysm and that it was serious and that I would need an MRI scan. Two days later I returned to the Royal Brompton Hospital for my MRI scan. I was seen again a week later by Dr. Somerville and told that I needed further heart surgery to save my life. The aneurysm had actually been there for about 4 years and was steadily getting larger. You can imagine how I felt - shock, anger, sadness, fear. All these emotions flooded in on me. Some days I would manage pretty well and other days I felt so down. I would frequently lay awake at night worrying about the whole thing. The nights seemed so very long and I just wished the operation could be over with. It was less than 3 months since my open-heart surgery to replace the defective valve and now I was facing more major heart surgery! I have to say the thing that really hurt deep and still hurts is not having been told the truth by former Cardiologist. I would have died with this condition. Thankfully I arrived in the expert hands of a team of surgeons, doctors, nurses and others experienced and skilled in treating GUCH patients.

In January 1999, Prof. Sir Magdi Yacoub saw me as an outpatient and confirmed that I did need a 3rd heart operation. I was more scared than ever about this operation as it would be a redo operation, carrying a high risk. However, I knew that my best possible chance of survival was with Prof. Yacoub and that gave me the confidence to face the surgery. A date was given for the operation. I will never forget the worry on my parent's faces as we sat there in Prof. Yacoub's office that evening being told the seriousness of my heart condition and what needed to take place.

It is now 9 weeks since Prof. Yacoub performed a successful resection of my aneurysm. I survived again! It was a tough time with the surgery lasting 6 hours. Thanks to the skill and experience of Prof. Yacoub and his team I pulled through. Dr. Somerville and all the doctors and nurses at the Brompton were great. I was not by any means easy and I am so happy to be alive and here to relate the experience. I was in ICU about 4 days and in hospital 2 weeks in total. On the day of my discharge home I had the unexpected privilege of being interviewed for the BBC TV 'Newsnight' programme and an item about the lack of specialist care in the UK for GUCH patients.

Since my two latest heart surgeries I have come to appreciate more than ever the skill and dedication of all those wonderful heart surgeons, cardiologists and nurses who cared for me. I am also so very appreciative of GUCH PA (the former name of The Somerville Foundation) and the help and encouragement everyone has given. Now that my surgery is over I want to give something back to those who have helped me. I am focusing my mind on helping others with CHD in any way I can. One way is through GUCH PA and I am planning a sponsored walk across Dartmoor next May. The walk is called the 'Two Moors Way' and starts in South Devon, just outside Plymouth and ends in the picturesque fishing village of Lynmouth, North Devon. The walk crosses both Dartmoor and Exmoor hence it's name and covers a total of 103 miles. I am also looking forward to going on the 'Outward Bound Course' at Ullswater this August. It will be a great opportunity to meet other GUCHs and I am sure will help me regain some of the confidence I have lost.

One of the many positive things that has come out of my heart surgery experiences is the strength and encouragement that can be gained from others who have been through similar experiences. I have found inspiration from talking with other GUCHs and hope that my story will go some way towards helping others.

Since this most recent heart operation I have learnt not be so complacent about the life I have. I'm a lot more grateful for each day I have and intend to live each day to the full. My message to those undergoing heart surgery is not to give up on yourself. Try to get back to what you were doing before.

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