Meet the patients: Eamonn Bayes

Cardiac patient Eamonn BayesI was born in 1976. I was diagnosed at birth with a congenital heart condition called VSD (Ventricular Septal Defect or hole between the ventricles of the heart) and subaortic stenosis with aortic root dilation. Since my birth I’ve undergone open-heart surgery four times. Below I’ve listed more details of the procedures and information about my condition and life which I hope will be helpful to others facing or who’ve undergone open-heart surgery:

The first open-heart surgery: June 1979

I was three years old and my first surgery was performed to repair the initial VSD. This surgery was performed at the Western Hospital in Shirley, Southampton. I can’t remember much about it but I always remember my parents saying I had a great team of surgeons and doctors: Mr. James Monro (Consultant Cardiac Surgeon), Dr. Barry Keeton (Consultant Congenital Cardiologist), and all the other doctors and nurses who looked after me whilst I was in hospital. Growing up with this condition was normal for me, but for my parents it was a worrying time. I just got on with my life and enjoyed it to the full. I loved playing sports and riding bikes with my friend’s and all the normal stuff that kids do. Sometimes I didn’t understand why I got tired quicker than my friends, which was frustrating at times as I couldn’t do some of the things my friends did.

When I was in my teens I loved playing football and played for my middle school, my condition would never stop me trying and I think it made me even more determined to do my best at sports which I played in.

My second open-heart surgery: November 1990

At the age of 14 I underwent a second open-heart surgery to resect the sub-aortic stenosis. I was admitted to Southampton General Hospital for this operation and was on Ward E1 (also known as Ocean Ward). The ward was great and the nurses and doctors were all very friendly and fun too. I even had my own room with a TV and video! Having these things really did help pass the time, which made my stay less stressful. My operation was another success due to the amazing work of Mr. Monro and his team of surgeons. However unfortunately I suffered a collapsed vein in my leg, which made my recovery slightly harder this time which was a bit of a set-back as it was painful to walk for a while following the surgery. I went back to school after three months and started doing sports again, I can say it was hard at times but my parents and friends were always helpful and understanding with my condition. I made it through school and got my G.C.S.E’s. After leaving school I went to college and did a Y.T. (Youth Training) course in bricklaying. At the weekend I played football for my local football club, like I mentioned earlier I never allowed my heart condition to stop me enjoying life to the full.

I’ve lived an active life and enjoyed most outdoor sports and going out with friends as normal teens do. Whilst growing up I’ve tried a few different jobs including forestry worker, bricklaying, and chairlift operator. I found I enjoy gardening the most and love working outside. Being stuck behind a desk was never really my thing. Working outdoors has the benefit of keeping me fit and healthy, which is good.

My third open-heart surgery: March 1999

I was 21 when I needed further open-heart surgery to replace my aortic valve with a tissue valve. I didn’t really understand why I needed this operation because I felt ok in myself. I did get tired but just thought this was normal for my busy day-to-day routine, I didn’t connect it with my heart condition. When the doctors at Southampton General Hospital explained that I needed an operation and why I realised that something wasn’t right – as a patient you don’t argue with yours doctors, they know what they are talking about. I was admitted to Southampton General Hospital for major heart surgery again, but this time was quite different for me as I was in the adult ward. I felt pretty apprehensive about this as I was the youngest in ward but as usual Southampton General Hospital has great staff and they all made my stay as comfortable as possible. This was my last operation by Mr. James Monro and his team of surgeons before he retired. The operation went well and was successful. I now appreciated why my parents had so much respect for Mr. Monro and his team as he had performed an amazing operation on me and given me a better quality of life. So many people are alive today thanks to the skill of Mr. Monro. I will always be grateful to him and all those who have cared for me over the years; I can never truly thank them enough. After the operation I was put on aspirin to help thin the blood, which I got used to after a while, as I had never taken tablets before for my condition.

In November 2010 I had a routine check-up at Southampton General Hospital. It was at this appointment that the cardiologists decided that it was time for my 4th open-heart surgery. This news initially came as a bit of a shock to me and my family as I now have children - it was a completely different ball game now! I was also halfway through my college course in horticulture that I was doing alongside my gardening job and I was desperate to complete it. Luckily for me after consultation with Mr. Maarku Kaarne (Consultant Cardiac Surgeon) he decided that I had enough time to finish my course, which I did so in July with a distinction and I even won an outstanding achievement award for being an inspiration to others!!!

Eamonn and fellow cardiac patients on ward E2My fourth open-heart surgery: August 2010

I was admitted to Southampton General on the Young Adult Cardiac Unit ward (E2) for an aortic valve and root replacement operation. I felt more scared this time round due to not really knowing the surgeons and being away from my partner and children. The doctors explained things clearly and reassured my fear about the operation. My heart surgeon Mr. Maarku Kaarne was amazing and repaired my heart. All the CICU (Cardiac Intensive Care Unit) nurses and doctors were superb and looked after me very well. Back on Ward E2 my surgeon Mr. Kaarne came round to check on me, he handed me a drawing he’d done for me illustrating how he’d repaired my heart – he’s a great artist too! His illustration helped me understand what my surgery involved. All the surgeons, cardiologists, nurses and technicians at Southampton General Hospital are ‘world class’ in my opinion. I really can’t sing their praises enough and will always be thankful to them all.

My stay on ward E2 was good not only because of the great medical and nursing team, but also because of the other patients who were mostly young adults like me and were all so friendly. There were about six of us in at the time. I got to make friends with each one of them and there was a real comradeship between us. This was great as we made the most of our stay in the ward with lots of laughs and good humour which helped us with our recovery and made the time pass a lot quicker. One of the patients on my ward had had the exact same operation as me, but ten years earlier (and was the same age as me now at the time of his op. He even had the exact same valve as me: manufacturer and size valve!!). Like him I’m now on Warfarin for my mechanical valve. It was really helpful comparing notes on recovery times, physical activity and management of Warfarin etc. These are things that only another patient in the same situation can truly identify with. It’s great to hear from the doctors and receive written/published information, but to talk face to face with another young adult in the same or similar situation is the best medicine.

Eamonn in the YACU day roomOn this ward they had a day room for other congenital heart patients to use. This room was invaluable as far as I’m concerned and I’m sure my comrades would agree.... as we would often meet up in there and chat and share our experiences. Once the door was shut it felt like we were totally away from the ward. The room had a lovely new flat screen TV, two computers, Nintendo Wii and Xbox, plus all the current games – for us it truly felt as though we were at home or at least away from the hospital environment. It really made being in hospital a more bearable experience.

Back Home and Recovery

It’s now 6 months since my open-heart surgery. After coming home from hospital I was referred to cardiac rehabilitation which I found very helpful. Most of the folk on the program were much older than me and their conditions were quite different, many having suffered heart-attacks or coronary bypass surgery, also their level of fitness and goals were quite different to mine. I was assigned a personal trainer for 2-4 weeks who helped me regain my fitness through things such as using the rowing machine, treadmill etc. Cardiac rehab really helped build me up and regain my confidence. It also helped my level of fitness which I’d lost during my surgery. The exercise was specially tailored to me, which was great.

Following cardiac rehab I returned to work as a gardener on light duties working part-time (Mon-Fri, 8:30-12noon) for a period. Initially I was very wary of lifting anything heavy or over stretching. Soon I noticed my energy levels had increased. It’s strange you don’t really notice it day by day, but as you look back a week, the recovery process is quite noticeable.

Having a mechanical valve has taken a bit of getting use to also. Initially I found the ‘ticking’ sound quite noticeable and to be honest it’s taken a while to get used to it. Now I find it quite calming actually and my partner Kerry likes the sound of it – it helps her sleep, so that’s good!!

Eamonn Bayes and familyBeing on Warfarin to thin my blood means I have to have regular blood-tests to check that my blood is thin enough to prevent blood clots on the valve. Keeping the levels or INR (International Normalised Ratio) within the normal range has been a little difficult at times. There are so many things that can affect a person’s INR e.g. alcohol, certain foods, medications etc.  I only drink moderately and watch my diet, this combined with regular monitoring at my GP surgery means my INR is closely followed and remains within range.

I used to really love football, but I’ve now given this up as it’s a ‘contact sport’ and not advisable for someone on Warfarin. I still enjoy life to the full though and have recently bought a new Specialized mountain bike which I ride regularly. I also love fishing, which sometimes involves climbing up and down cliffs! I also keep fit and busy with my gardening job.

I hope my experience has been helpful to you and that you can gain confidence that having a congenital heart condition doesn’t mean your life has to stop. I’ve had multiple heart surgeries and have come through each one very well and my quality of life has been greatly improved. I have a lovely family and my life is good thanks to the cardiac surgeons, cardiologists, nurses and everyone at Southampton General Hospital. My family and I really can’t thank the specialist team enough! As far as we are concerned Southampton has the best centre in the UK for treating children and adults born with a congenital heart condition!