Meet the patients: Peter Herrington
Living with Tetralogy of Fallot
I was born in 1966 with a congenital heart defect known as Tetralogy of Fallot, however it was not diagnosed until 1968. In 1969 I underwent my first procedure on the long path to correct the heart condition. This procedure involved surgery through the back of my chest to connect my ascending aorta to my pulmonary artery, via a ‘Waterston Shunt’. This was to increase pulmonary circulation, and would see me through until the next procedure.
In 1972 I underwent what was said at the time to be ‘the full correction’ of my heart condition. This involved open heart surgery, to repair some of the defects. A transannular patch was used to close up the whole between the two ventricles, and the correction of the pulmonary artery stenosis. Both procedures were performed at Killingbeck Hospital in Leeds.
At the age of thirteen in 1979 I moved with my parents to south Hampshire. I was in very good health, and doing all the things that healthy children do. I would go on very long cycle rides with my friends, and would also enjoy lots of swimming both in the local pool and in the Solent. During these teenage years my parents would take me back up to Leeds, for my bi-annual checkups. Every year would be the same; I was A1 fit and healthy. Eventually, in the late 1980’s it was decided to switch from Leeds to Southampton General Hospital.
At Southampton I was introduced to Dr Keaton, who then performed my very first ever ultra sound scan. The information he gave me from the results of the scan was to me, devastating! My whole life was turned upside down with the news that there was still something wrong. I was told that there was stenosis of the pulmonary artery, which was increasing the pressure in the right ventricle. At the time I believed they had it all wrong, how could I have been A1 for all those years and now this! After a few months in a depressive state, I realised that a new battle had to be won.
1992 saw the beginning of further, ongoing treatment to rectify the heart. First up was ‘Balloon Dilatation’ of the right pulmonary artery, with some degree of improvement. Over the next few years, I had further investigations which included MRI Scan, Nuclear Medicine, Angiogram and Stress Tests. However the stenosis was to slowly return.
In 2003 I started to become aware of some rather disturbing irregular heartbeats, to the point I took my self to A&E at my local hospital. They observed me over night, and advised me to get in touch with Southampton.
During my next appointment at Southampton I was introduced to Dr Veldtman as well as Lynda and Mel (cardiac liaison nurses) I was made aware that my heart condition had finally caught up with me. I needed a new ‘pulmonary valve’ as the stenosis was now affecting the dynamics of the heart, which in turn was causing the irregularities. The irregular heartbeats are known as ‘Premature Ventricular Ectopics’ I had days where I struggled to walk up the stairs without feeling breathless. My lowest point however came whilst I was walking home from work at such a slow pace, that an old man with a walking stick walked past me with ease.
So, in 2004 I underwent ‘Pulmonary Valve Replacement’ using a ‘Contegra Pulmonary Valve Conduit’ I had researched this valve prior to the operation, and decided I would prefer this instead of a mechanical valve. The reason for this choice of valve was because I had read of research into replacing tissue valves via a catheter, and I had a feeling this would not be my last valve replacement.
I have to be honest, I was very worried about been opened up again. I still have memories of my surgery at the age of six. Now, at the time I was in my late 30’s with a wife and two children to be concerned about, how would this affect them?
The surgery was carried out by Mr Haw who I was told to be one of the best. I was in hospital for seven days, as I made good progress. I then spent three months rehabilitating at home. Everything seemed fine, but this was not the case. I still had some narrowing of the pulmonary artery, which required the insertion of a stent in 2005 I was also still having regular ventricular ectopic beats, and it was decided that I should have an ICD implant as a precaution, after having a positive ventricular tachycardia stimulation test in 2006
Now, some five years later in outpatient clinic something was seen around the area of my pulmonary valve during my scan, by Dr Carroll. Unsure what it was I was told that to get a better image, I would need to have a Transoesophageal echocardiogram (TOE) I had no idea what this was until I researched it on the internet.
It was at this point any past fears of open heart surgery became insignificant. I was more fearful of this procedure than any other I had ever encountered. I don’t know why, but the thought of a tube down my throat scared the hell out of me! Immediately I sent an e-mail to Lynda and Mel expressing my fear, they replied with some very reassuring words but it didn’t really help me. I knew that I had to have this done, and so with lots of support from my family Lynda and Mel I reluctantly agreed.
The procedure was carried out by Dr Carroll herself, with assistance from three other team members. They could see how I was feeling towards the procedure, and talked me through every step of the way. The worst parts for me were having the anaesthetic spray on the throat, which made me feel that it was closing up. However this was explained to me, and I was advised to just breath normally and slowly through my nose. This worked a treat, and kept me relaxed and calm before sending me off to sleep with the sedation. The only other issue I had was near the end when coming around from the sedation I felt the tube coming out, but this was just a slight sensation.
All told, I have to commend the fantastic professionalism shown by all involved. This procedure is very simple, and I will never fear it again.
I believe that my future treatments may include ‘Percutaneous Valve Replacement’ but I will have to wait and see.
For now, I lead a normal life. I work as a lighting engineer, travelling across the south east of the UK. Medical advice tells me not work at height because of my ICD, however it is only advice! I have had several holidays to the Greek Islands, and sat in temperatures of 40oC. I enjoy swimming and cycling when time allows and I also enjoy doing DIY projects around the house. I believe life is for living, I just wish it could be a little better, but then it could be worse. I also wish that people like me were not discriminated by insurance companies, but they never see the positives.
On a brighter note I do need to say however, that all the staff within Southampton General Hospital cardiothoracic unit are just fantastic. It goes without saying that their honesty and integrity together with their absolute professionalism always leaves me feeling overwhelmed with my upmost respect for each and every member of the team. I feel so honourable and proud to be a patient in a unit which makes me feel like a friend. Thank you.