Breathing Issue Can Anyone Help

To make this as short as I can. I had PSVT ablation. The AV node was partially ablated due to someone not paying attention. I was in a complete block for a few weeks then eventually went back into a 1:1. I ran and exercised without issue prior to this injury and even after with ease. I even completed a half marathon about six months after this ablation without really training for it and had no problems. About a year and a half after the ablation, I started not feeling well my heart was throwing some scary fits and discovered I was in a second-degree block with a low heart rate at night. I was told I needed to have an emergency pacemaker implanted to prevent death in my sleep. I have had issues ever since. After the implant, I was swollen constantly and it took about 6 months to get the pacemaker adjusted to where I could breathe and feel as normal as possible resting. I have not been able to run or do any activity with more exertion than a walk. I can make it for about 15min. max if I try to increase exercise activity before I feel like I cannot breathe or that I am going to pass out of vomit. It is incredibly frustrating. I also now have extra atrial beats and have had four more ablations for tachycardia. I am still having the same symptoms. Frankly, I feel like I know my body better than anyone else, yet I feel like I get bounced from doctor to doctor and literally go through the same drill. It really upsets me when a medical professional does not listen to me and tells me, "Oh, you're just deconditioned" or "Swelling in your face, hands, and legs are normal". Mind you, I am in my 30's never had swelling until this stupid pacemaker was implanted. I look like someone shoved an air hose up my rear while I slept, that is how swollen I am when I wake up. I swell anytime I get up and move around too. This is not normal. Anyone with eyes in their head can see the swelling is not normal, yet it gets brushed off constantly. I have always thought it was a pumping issue, but keep being told it is not. So what is it? Does anyone have this problem? Also, is it normal to not be able to exercise? I was in the best shape of my life before this and now I am in the worst shape of my life. I don't get why I cannot handle exercise. I know how to push myself. Has anyone had issues exercising or swelling constantly? Is this really normal? If not, does anyone know what I should do to try and get to the bottom of this?

2 Comments

NOT normal

by AgentX86 - 2020-06-14 22:15:27

I know you've been bounced around from doctor to doctor but it's (past) time to fire them all and find someone who knows what they're doing. You're 37, not 97.  This is decidely not normal.  You need reasons and solutions, not dithering and excuses. I don't know what your insurance situation is but it's time for a major (perhaps teaching) hospital, not a rinky-dink meat processing plant. I see you're in Oklahoma but not where in OK.  Oklahoma Ciy and Norman seem to have hospitals with decent cardiac units but maybe that's where you are already.  If so, try another.  You can't put up with this.

Pacemaker settings?

by asully - 2020-06-19 22:34:38

So my situation is slightly different, but similar in some ways.  After getting sepsis from an infection, and going into Acute Respiratory Distress Syndrome (ARDS) I ended up needing open heart surgery and a valve replacement to remove vegitations (globs of infectious material) from my heart.  During the surgery some of the infectious tissue removed put me into complete heart block.  After this I continued to have CHF which is where I differ from you, and of course complete heart block.  I was first set up with a single chamber and only paced in my ventricular, this caused my atrium and ventrical to not be in sync and my heart failure continued to get worse, I could not exercise at all, and would have bouts of dizziness and vomiting.  Finally after a year I found a doctor who put an atrial lead in which significantly improved my CHF (which included swelling aka edema), and increased my exercise capacity.  Over the next two years I worked out 5-6 days a week doing cardio and heavy weights.  I still had major limitations though,  because the pacemaker has an upper limit set for heart rate I struggled with cardio, or doing weight lifting sets with 10 or more reps.  I went to the electropysiologist or pacer tech a number of times and we played with things like the sensitivity for the rate response, and my upper and lower rate limits.  Things improved some but never fully, I still to this day can not maintain any cardio beyond a brisk walk for more than a few minutes, I have come to the conclusion it is because my pacemaker can not get me up to the heart rate I need to maintain that level of activity.  I just experienced this today when I went in for a treadmill stress test, because of my age and relatively healthy BMI they wanted me to get up 90percent of 220BPM and no matter how hard they pushed me they couldn't get it to elevate lol so the test ended when I obviously wasn't getting enough blood to sustain the level of activity and got dizzy.  I know this all seems like a long answer that may have little to do with your situation.  I guess my thinking was maybe you need a different type of pacemaker like myself, or you need your settings adjusted.  And also to tell you that so far I haven't found a complete fix to the cardio problem unfortunately although I have a new electrophysilogist/pacer tech who knows her shit and maybe she can help me find a way to increase my upper heart rate limit.  The edema your expieriencing sounds more like congestive heart failure also, have any docs mentioned that as a diagnosis or suggested testing. CHF can be caused by all kinds of heart disorders like valve disease or arrhythmias not just from coronary artery disease.  The only thing that helps with my leg edema are diuretics and even then I always have cankles now. BTW I am a 33/yr old female.

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Since I got my pacemaker, I don't pass out anymore! That's a blessing in itself.