@marybird
Being a newbie is a good thing not a bad thing. I wish I was a newbie which would mean did not need the ICD/Pacemaker back in 2006. I was put on the ICD/Pacemaker as my EF had reached 30 and was having electrical issues with heart.
I was seeing a local cardiologist back then and decided to get a second opinion at Mayo Jacksonville. There I met Dr. Kusumoto (Director of EP and Pace Clinic) and he recommended both ICD and Pacemaker. The ICD because of the low EF and the Pacemaker due to helping my heart with it's electrical functions. He also referred me (same day) to heart failure specialist Dr. Yip (Director on Heart Failure and Transplant) who recommended I change my medications.
With the fantastic consultations and time spent with me I immediately change my care to Mayo Jacksonville. I have been seeing these 2 specialist at Mayo Jacksonville for over 20 years now. We have gotten old together.
I am fortunate to have a pace clinic and a portal system. Any test done, office visit, phone conversation is summarized and sent to patient via a portal system. You can sent portal message to your care givers and they can send messages to you.
Probably over the 20 years with ICD/Pacemaker got called at home at least dozen times. I even got called at home a couple of times by my heart failure doctor (over some questions I had sent him via portal) and same for my EP doctor for same reason.
I have posted many times with those having issues accepting their ICD/Pacemakers is that I was told to view it as having your EMS team waiting to help you.
For me that has really helped and having my ICD/Pacemaker on the job 24/7 probably means the reason I am still here to type this. I probably have had the ICD/Pacemakers shock me probably a half dozen times when the pacing me out does not work and I get a shock now over the 20 years. Every time it does my team goes over what may have caused it and try to mediate and correct the cause of happening again.
@jc76 It sounds as though you've gotten excellent care from your cardiologists at Mayo over the years.
I like your points about considering the ICD/pacemaker your own personal portable EMS team- for sure they can get you out of V-tach, dangerous cardiac pauses or arrests sooner than a real EMS team could be notified and the time it takes for them to get to you. Having those devices allows you to live a normal life, do what you want to do, at least for the most part.