thirty two years afibber

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Posted by Glenn Camp on December 27, 2003 at 18:08:14:

I never heard of Pulmonary Vein Ablation or Cox-Maze procedures until a couple weeks ago when my oldest daughter told me about MAZE. A regular MD at a small hospital where my daughter is medical records director told her about some websites about PVA and MAZE.
I know this is the same old song, just a different verse from another longtime afibber and will be boring to read from most folks point of view. But only those of you who have suffered from this dastardly affliction can relate.

However, here goes..........

I have had atrial fibrillation and Premature Ventricular Contractions for over thirty two years. Cardiologists and Electrophysiologists still can't determine which precipitates the other. I have taken 'all' the antiarrythmic medications through the years with the exception of Tikosyn. I've had cardioversions and the longest lasting of NSR following CV was a little less than two days. I don't recommend wasting time and money with CV to anyone. However, I'm aware that for a few people it may work.
I have my third twin-lead pacemaker, the last being one with the 'overdrive' thingy that's supposed to 'kick-in' so I can't feel afib happening. That only worked for about ten months. I might add that the first pacemaker was implanted because of bradycardia where my heartbeat would drop down to 26-27 beats a minute when sleeping. I was told by my cardiologist that I would eventually go to sleep and not wake up again. Needless to say, I told him to implant one.
The present pacemaker with 'overdrive' hasn't been controlling afib since the first of 2003, and afib has progressively worsened more severely and frequently. Betapace, Lanoxin, Vasotec, ZBeta, etc., are not controlling afib, only putting me in a toxic stooper most of the time. (I could list all the different antiarrhythmic meds I've taken over the eyars but there wouldn't be enough space). All my present Electrophysiologist and Cardiologist recommeds is taking higher doses of medicine and more often. None have ever mentioned to me about procedure that can possibly cure afib, only having an a/v ablation suggested four years ago. I never had it done either.

I have daily attacks, some more severe than others.
I have become completely debilitated by this mess. I'm afraid to try to go anywhere by myself for fear of having an attack and need someone who knows the score to help me. Believe me, it's not much of a life in this condition. I would go anywhere right now to have MAZE or PVA's performed if I could just travel without 'hitting the floor' because of an attack and having to urinate every two, three, or four minutes. Would be kind of difficult to fly on an airplane like that. Guess I could wear a diaper huh? No diapers made that would hold that much I'm afraid.

By the way, how do you all travel any distances, either by plane or car and feeling like passing out or dying, difficulty breathing, etc., during afib attacks? I don't know how it's done.

I live in central East Texas 125 miles due east of Dallas. It's approximately an eithteen or twenty hours drive from me to one of the clinics that specializes in these procedures in the northeastern part of the country. A few places in Texas does PVA's, but not any with experience as I've read about such as Cleveland Clinic or Michigan. Dallas, Houston, Austin, Tyler, and Galveston all toot their horns about having great medical centers, etc., but I have heard none are experienced and equipped as well as facilities talked about on this board. I know a lady in Dallas whose EP does PVA's, recommended she have PVA done at a clinic in Indiana instead of there in Dallas. So having it done closer to home is out of the question right now.

I hope I don't have any more attacks today after the one before noon that lasted over five hours. It was one of the lighter ones.

Oh well, I warned y'all this was same old song.

But the beat goes on and on and on and on even though it's irregular. I'm just thankful it's still beating.

Regards,
Glenn Camp

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