I've just joined and would like to know how many of you have experienced the massive deterioration in quality of life I have.
In 2005 I had my first pacemaker from when I experienced a steady deterioration. Before insertion I had ridden bike races, winning my last race in 2001, riding Paris - Brest - Paris 1999, Etapes du Tour (de France) 2000 and 2001. By 2004 I had stopped racing because I could not rely on my 'form'. I could still give others I rode with a 'hard time' but I could not rely on my ability to respond when racing.
From 2005 on I made repeated complaints about the settings and had numerous tests. Only when I consulted cardiologists who had no responsibility for my 'case' was I told that I had the 'wrong pacemaker for' me, that the pacemaker was set 130 bpm paced maximum 'inappropriate for any athletic performance'. They were recommending a CRT but realised that NICE would not sanction it.
Replacement 2012, pacemaker failing by 2015, EF >30 and a CRT-D in Oct. 2015. No improvement but I did manage the rehab. 12 week prog. April to July. However, I was told I had a heart attack in April and put on anti tachycardia Drugs (Apixaban) had a fall and find my pulse will not rise above 72 bpm even when 'exercising'. Over the year exercise has come down from 40 - 50 minutes of steady medium effort om a stationary bike to 5 mins. on a treadmill or bike after which O'm breathless.
My cardiologist's response is 'well I'll take it out then. For some time I have been refused information on my pacemaker clinic check-ups and decisions made about me have never been 'fully informed'.