Jan (left) with the County Chairman of the Norfolk Guiding Guild
Tuesday 21st June 2016
Jan’s treatment pathway for her mitral and tricuspid valve disease was delayed due to misdiagnosis. Her poignant story demonstrates why Heart Valve Voice works tirelessly to raise awareness of heart valve disease, and the improved quality of life that treatment can offer.
At the age of 40, I was diagnosed with Myalgic Encephalopathy (ME), and my life came to a halt. I was no longer able to work as a teacher, or continue as a Guiding and Brownies leader. Over the next 20 years my mobility deteriorated, and became so poor that I was eventually forced to use a mobility scooter and wheelchair to get around. My lifestyle was very restricted.
In 2007, I was diagnosed with a heart problem after a persistent cough. My GP, who had tried a variety of options, sent me to a respiratory specialist, who in turn sent me for an ECG. When seen by a cardiologist I was told I had mitral and tricuspid valvular disease. It was a complete surprise, as I had never heard of heart valve disease!
I had lived with the frustration of my symptoms for many years, and put all ill health down to the ME diagnosis 25 years ago. To be told that some of my symptoms were due to valve disease came as a huge relief as this condition it is treatable. I don’t remember being nervous before my surgery; I was simply glad that something was going to make a difference to my life.
In 2008 I had open heart surgery, receiving a mechanical mitral valve and a tricuspid valve replacement. Due to a minor issue during surgery, the surgeon also decided to fit a pacemaker. I remained in hospital for three weeks, slowly regaining my mobility and ability to move. The staff wanted to ensure I was able to climb the stairs before returning home. Once discharged, I was very happy to go home, and really felt like a new chapter was beginning for me. I recovered at a good pace, and soon noticed improvements in my mobility and energy levels.
Having used a mobility scooter for 10 years prior to my operation, I am pleased to say that it has been parked in my garage since my procedure 8 years ago! Locals who see me in town now still comment on how good it is to see me out of my scooter. The valve disease treatment has changed my life! I am now able to attend Guiding events. Had I not being diagnosed, the cardiologist said I would have died within 2 years.
My advice to anyone with heart valve disease would be to take up the offer for rehabilitation after treatment. Sadly, I missed out on this, but I feel it would have been incredibly helpful and would recommend asking about these options before surgery. I’d also stress that the treatment really can restore your quality of life.