Hi everyone, I’m new to this forum and have been reading through a number of post and comments - which has been super helpful! I’m hoping someone can comment on my situation below - wondering if anyone else has been really struggling with getting their activity levels back up to “normal” before the pacemaker?
I am 30 years old and had my pacemaker implant early September 2019. I was very active until the several months leading up to the surgery, where I struggled with severe fatigue and low sleep quality, as well as digestive issues. I was told to not modify my activities unless I felt it necessary, so I was still active but limited due to feeling tired all the time. I’ve known I had heart issues since I was 22, when I found out I had a type 2 AV heart block, which was meant my heart was pausing for up to 5.2 seconds between beats. This was was responsible for serious dizzy spells I’d had since I was 12. Spring of 2019 we discovered the pauses were getting longer, and I was told I’d need to consider a pacemaker, or I may not legally be permitted to drive anymore. They thought the decline in my heart function was responsible for the other issues I was having, and I was told I’d be “good as new” in no time. Now in March, 6 months later, I’m still struggling with fatigue, and I can only walk about 30 minutes before I feel faint and shaky and have to sit down. This was not the case or normal before the pacemaker. My resting heart rate before the pacemaker is normally very low, 45 bpm, and initially the pm was set to 60bpm resting hr. I felt like total garbage with it set at the resting hr of 60 bpm, with my upper chamber pacing 47% of the time to keep it at 60bpm. I asked them to lower it to 55bpm, still felt like total garbage, and I was being paced 46% of the time to keep it there. I only wanted to stop my heart from pausing so long between beats, not affect my resting heart rate!!! Now they’ve lowered it to 50bpm and they say there’s nothing more they can do until I’m more active....but my heart rate shoots up to 150 bpm just from walking!!! I’m a former competitive swimmer and swim coach, and after 6 months I still can’t swim more than a few lengths without my heart rate skyrocketing past 180. Help!!! Is this normal??? I’m on a medical leave right now to just rest and let my nervous system settle down, because I was so stressed out :( I am seeing a great therapist for trauma recovery, she’s been extremely helpful. I just want to know it won’t be like this forever....I don’t have children yet, but when I do I want to know I can run around with them and be ok. Sorry for the rant - appreciate any words of wisdom :)