"Lack of pace-maker aftercare"

Long awaited and much needed pacemaker fitted January 2021, operative  care was great but after that you are basically on your own. As a younger patient with no other limitations and wanting an active lifestyle I am supposed to have the Closed Loop Stimulation function activated which gives a more responsive and physiological heart rate than just a flat 60 which is the minimal default setting it leaves the factory with.

On my first clinic visit to get this turned on they were unfamiliar with this function and said they don't normally activate it, which is a ridiculous waste of an expensive device when a much cheaper basic model could be used, rather like having a porsche and just driving it around in first gear.

After this was sorted out with the consultant, I excitedly went back to get it switched on. As is fairly common as these devices often need some initial fine tuning to suit the individual, the first setting tried was a bit too aggressive, amazing during the day but kept me up all night with a too high a heart rate. They could only fit me in as an emergency the following day to disable the CLS, but I was supposed to be given the next available appointment to have it reactivated to a slightly lower setting. I was told about 3 weeks. That was at the end of March. I am still waiting and have been given an appointment for October, as if it is just a routine check up I am waiting for, not a device that is only semi functional.

I am truly grateful to have a heart rate of 60 rather than the 40 or so I had untreated, but feel so frustrated to be missing out on what this amazing device could do for me if programmed properly. Clinic seem scared of it, inexperienced and as if they don't want to touch it.