I posted this by mistake in Debi's link. After all that work, I'm afraid not many people would see it there, so here goes again.

Debbi's inquiry promted me to get off of my duff and weigh in. I have enjoyed this board so much and have, of course, learned a ton. I think I've asked a couple of minor questions, but want to see if anyone has any advice or encouragement to offer.

I have had LAF for more than 10 years (it took a while to make myself find out what was wrong - good old denial!). Episodes weren't very frequent, but fairly dramatic. I was started on lanozin, then went to rhythmol, then, about two years ago, the dreaded amioderone. This caused not only fear on my part, but tingling in my extremeties, halos around lights, and skin sensitivity. I was also on coumadin for three months prior to a scheduled cardioversion. It took all that time to get into the therapeutic range. Then I managed to convert myself, so no caardioversion and I got to stop coumadin. I have since stopped the amioderone because it really wasn't that effective and was put on atenolol for rate control. This helped in that I don't feel my episodes as much. The bad news is that I have slipped into more or less constant afib.

I have seen Dr. Chung at the CCF and am scheduled for pulmonary vein ablation in February. While there in October, a stress echo showed mitral valve regurgitation at a level 3 (out of 4, I believe). I had been diagnosed with a very minor mitral valve prolapse long ago. Dr. Chung thought that the increased level might be due to the fact that I was in afib at the time of the stress echo. If I need mitral valve repair I can have a maze at the same time.

I was started again on coumadin. At the end of three weeks in the therapeutic range I am to start flecanide. Despite all that I have learned on this board, I have never heard anyone mention being hospitalized for THREE days to get going on this drug! I go in this Saturday for that. When in NSR, either due to the drug or a cardioversion, I am to repeat the stress echo to see if the valve has gone flooey.

My goal, of course, is to get this monkey off of my back. I want NSR, to not feel tired ( I don't know if this is due to the AF, atenolol, or the valve), and to get rid of these drugs. I am resigned to mitral valve/maze surgery if needed. People have had great results from this. I tell myself that I am resigned to valve replacement, but really I want repair. CCF has done great things in that department, too.

I really value all of your advice. I have gotten so much out of the reports of Char, Sammy, Jackie, and Newman (my husband wants to invite you over for dinner, Newman) concerning ablations. I knew exactly what questions to ask, answers to listen for, etc. when I went for my consultation.

It is time for me to get my information out there and become a more active member of this wonderful forum.
Judy

Hi Judy,
I am not sure that this is relevant for you, but last November I was diagnosed with severe mitral valve regurgitation as well as with moderate regurgitation of the pulmonary and tricuspid valves. After several months on atenolol and cozaar (an Ace inhibitor) most of the valves stopped regurgitating entirely and there is only a trace of mitral valve regurgitation. My understanding is that the valvular problem is due to atrial fib and I am therefore scheduled for surgery with Dr. Natale in February.
Best,
Lynn

Judy,

I was put in the hospital for 3 days, when going on flecainide. There is a certain portion of the population that does not have the cytochrome P4502D6 enzyme in the liver that is used to metabolize flec. It's better safe than sorry.

Richard

Thanks, Richard
I didn't know exactly why the three days. You are absolutely right that it is a small price to pay to be safe. I'm just worried about my sanity being stuck there while feeling fine.

Lynn,
Interesting. I always thougt that some afib is caused by the valve problem. The doctors did not think that was the case for me. I had never heard that it could be the other way around.

I'm so glad I finally posted all of my story; already I have received several really good bits of information that will help me.
Thanks,
Judy

Judy:
I answered on your other post, but forgot to mention that seeing halos around lights is more a symptom of Dig toxicity. If you take Digoxin or Lanoxin you might see if your doc wants to check your Dig level.

Pam

Pam,
I haven't been on digoxin in many, many years. My eye doctor thought the halos were due to the amioderone; they coincided perfectly with the time I was on it and went away after stopping.
Judy

Judy

You are lucky that your Dr's want to put you in hospital to start the anti arrhythmics. It shows that your Dr's are taking the side effects of these meds seriously. I wish mine had.

Good luck with the path you decide to choose.

Fran

After 15 years of paf with little sucess with all the known af drugs. I am now concidering ablation. Would appreciate any names of centers recommended for that process. Where or what is CCF refered in earlier posting. At this time am on Dofetilide (does not seem to be doing the job) and Inderol. These drugs have left me weak and feeling unwell, still have paf once a month.

Thanks for any information
LWD

Judy - As you know by reading, I go to the CCF and was recently ablated there by Dr. Natale.

When I was placed on Flecanide, I was indeed, hospitalized for three days and I even had to learn how to give myself injections in the stomach with heparin until coumadin levels could be reached. In the hospital, I was on heparin and but the transition to coumadin required the injections.
It was not bad at all - the injection thing.

Dr. Chung enjoys a good reputation at the CCF and you are in very good t hands.

Be sure to keep posting.

I live in the Cleveland area and if I can offer any support to you, I'll be happy to do so. Feel free to email me privately.

Regards, Jackie

Jackie,
Thanks for your words of encouragement. I have, indeed, been following all of your posts with great interest. I will have my ablation (if that's the route I end up taking) with both Dr. Chung (who was VERY impressive at my consultaion) and Dr. Tchou. I feel good about both of them. The fact that you are from the Cleveland area and have had so much contact with the Cleveland Clinic really makes you a wonderful source. Thanks so much.
Judy

Hi, LWD,
The CCF referred to is the Cleveland Clinic Foundation. It has a wonderful reputation in the treatment of atrial fibrillation (as well as many other heart issues). If you read back through other peoples' posts you will find many references to the clinic and Dr. Natale (the big name there). My research led me to them because of the number of ablations they had performed and the success rate. Newman, Jackie and Char, to name a few, are people who have gone there for ablations. Look back for posts from them. They are very helpful.
Judy

Hi Judy,

Thank you for the id of CCF. We live in Florida and I am desperate to find relief from constant pafib. Is the Cleveland clinic the choice of most people
with these problems? My elect phy has recomended The University of Gainsville hospital as the place of choice for ablation. So far unable to find any information on this location.

Thanks again, LWD

It is really helpful finding this site.

Hi LWD,
I don't know anything about the University of Gainsville hospital but if you post a question on its own about it, you might get some input from others. I gather there are several excellent hospitals for ablation procedures but the Cleveland Clinic is the best, or right up there. My husbands cousin who is a cardiac surgeon said I could not be in better hands than there.

Good luck in making your decision.
Judy