Cathy, thanks for sharing your experience, and I can sympathize with your condition, even if I am not in it. There is a member calling herself SusanD on affibbers.org forum who has a truly horrendous history, and she's still kickin'. In fact, I think she just moved from the USA to Great Britian...but not certain. Anyway, after literally umpteen interventions, and living at an ER for weeks at a time over the past four years, she is home with a permanently destroyed AV node and SA node and she has a pacemaker.

As Carey, the moderator on that forum warns people repeatedly, and he had six ablations over about four years, you MUST find the very best EP around and get on that person's schedule. There are scores of good EPS here and there, but the more difficult cases must get on the lists of the best in the business, even if it means travel.

And yes, pulmonary vein hypertension is a problem with some patients, especially after heavy catheterization. This is why the Pulsed Field Trials are under way, and newer methods are being tested all the time to avoid damaging the aesophagus and the Vagus nerve.

I can't tell you how many excellent EPs there are in the USA, quite a few, but the one we urge people to contact is Dr. Andrea Natale at the Texas Cardiac Arrhythmia Institute in Austin. He was trained by the vaunted Dr. Pierre Jais in France, and he continues to train many highly competent EPs.

Cathy, I was fit all my adult life. I don't know how well I 'lived', but I think I ate reasonably, don't smoke, don't drink much at all, and I was a competitive runner with a rest heart rate of about 42 BPM. One day, at the end of a 10Km 'garbage' run, meaning just getting a run in, no goal or training in mind, I felt weak and my legs felt like lead. Turns out I had commenced a history of AF. After multiple tests of all kinds, all that was left was to go to an overnight sleep lab. Bingo! I had apnea....and not just mild or moderate, but severe! My heart had finally thrown up its hands and said, 'Fine, if that's the way it has to be, I'll stop playing nice.'

Again, thanks for your informative post, and for sharing what must be a worrisome existence. I hope you find relief.

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