Thursday 5th May 2016
Guy was only 35 when diagnosed with heart valve disease after experiencing dizzy spells and breathlessness. After 6 years of regular monitoring, his mild stenosis developed into a severe condition and he received a mechanical valve. Below, he tells us about his experience of heart valve disease and how early diagnosis helped him regain his busy life back.
I was diagnosed with heart valve disease after visiting my GP seven years ago. I’d been having occasional dizzy spells, shortness of breath and blurred vision over a period of around a year. These occurrences were weeks apart and most only lasted a few minutes. My son was a baby, turning into a toddler, so I just put the symptoms down to the perpetual tiredness of being a new parent, and the excess caffeine I was drinking! I knew nothing about heart valve disease and I felt too young to put anything down to ageing as my health was otherwise all good.
On one occasion I had a particularly bad dizzy spell where I couldn’t stand. It took about 20 minutes to subside; that was my prompt to book an appointment with my GP. After a quick stethoscope check, I was diagnosed with a heart murmur and referred to a cardiologist. A number of the cardiologists have since praised my GP for spotting the murmur.
The diagnosis of heart valve disease was a complete surprise, but I was relieved to have an explanation for my symptoms. The cardiologist explained that my bicuspid aortic valve would need replacing at some point within the next 10 years.
I carefully researched my valve replacement options and discussed this with my surgeon; it was reassuring to hear how well practiced valve replacement treatment is and that there is support for patients. The process was explained at various times through my six-year surveillance period by both my cardiologist and Prof Bridgewater, my surgeon. I understood that my mild symptoms would inevitably become severe over time. For information, I turned to internet articles and YouTube – I stomached watching a YouTube surgery video a few weeks before my procedure! I wanted to be informed.
Although in many ways I was pretty healthy right up to the day of the operation, my condition was life-limiting. I was only going to get slower, more tired and career development opportunities felt limited until my valve was replaced, so I was very positive about the prospect of surgery.
I stayed in hospital for five days after my surgery and saw my surgeon every other day during that time. The nurses were also very caring and attentive. I slept a lot and didn't have any desire to be anywhere other than hospital, which felt a safe place to be. It was great to see my wife each day but lots of visitors would have been exhausting. I experienced less pain than I had anticipated, but sleeping was uncomfortable and it was difficult to move so I rarely slept for more than 3 hours straight. Watching my pacing wires being removed was the most nerve-wracking memory from that week but I felt much less restricted afterwards.
The day after I came home I noticed that I could bend down and stand up again (mostly picking up children’s toys!) without feeling nearly as light-headed. My blood pressure had risen as an effect of having a more efficient aortic valve so I wasn’t experiencing my previous low blood pressure symptoms. One month after my surgery I was still sleeping an extra two or three hours per day but I was walking up to three miles, and had regained upper body mobility and flexibility.
I have two pieces of advice for patients; wear an activity tracker, it was really useful and interesting to gauge my progress in terms of daily walks (an important part of rehabilitation), distance and ascent, and sleep. The wrist-based HR tracking may not always be precise so also consider getting a cheststrap-based monitor specifically for rehab walks.
Secondly, join an online heart surgery group and the Heart Valve Voice community, the support you get is wonderful and it is important that you share your story to help others.
The early diagnosis of my heart valve disease was massively important. I experienced a gentle decline in energy levels and aerobic performance plus restrictions on career and life decisions knowing that at some point I would need several months off work and steady recovery. My new mechanical heart valve feels like the start of a new chapter in my life. I am no longer short of breath and my aerobic performance and fitness is improving week on week, albeit from a very low starting point in hospital. One huge plus of having the surgery is that I can now go on roundabouts in the playground with my daughter! Before surgery even watching her spin on a roundabout left me feeling dizzy.