Two months post ablation

My ablation was two months ago today at the Cleveland Clinic. Dr. Natale was my EP. The first 15 days I was in normal sinus rhythm (NSR) except for some occasional pauses, or skipped beats. I transmitted the beats with my wristbands and little machine the CCF sent home with me, and they said the pauses were PACs. On days 16 and 17 I had on and off bigeminy and a few afibs lasting minutes and one lasted an hour. Then my heart seemed to settle down for another week or two or three.

During the second month, I have had some short bouts of afib on average about every other day. They last from minutes to maybe half an hour, and at times I go in and out and in and out of NSR and afib repeatedly. Actually, I am in afib now. I also every day or two get bouts of bunches of PAC's, with my heart seeming to stop multiple times for two or three seconds. When I start doing this, I do not feel good. I feel as bad or worse than in my old afib days. I have transmitted several of these episodes to CCF, and the answer always seems to be NSR with multiple PACs. I do have several documented episodes of afib at the CCF that I was able to transmit.

There have been a number of times when I called the CCF to transmit some abnormal heart rhythms, and I don't like their procedure. Often they put me on hold, and then when they come back on the line, they have to put me on hold again to change phones, for some reason. Then they ask me many questions, name, doctor, how do I feel, how's the weather, etc. and then finally they have me transmit my pulse. By then, about half the time my short bout of abnormal beats is over and I am in NSR. A missed opportunity. They should answer the phone and let me transmit. Then we can start conversing. CCF are you listening?

To quote the information sheet that CCF gives ablation patients before they go home: "After undergoing ablation, it is very common for patients to experience skipped beats or the feeling that their heart may race or return to short episodes of atrial fibrillation. This period of 'heart beat irritability' is normal and usually occurs during the first 2 to 6 weeks post ablation."

I am now almost 9 weeks post ablation and I am still having all of the above. I have also heard that patients may have these symptoms for three months post ablation. The information sheet is more official than hearsay, so I am beginning to think I am not 100% cured. What I do know is that before the ablation I was in afib 25% of the time, usually for hours or days at a time once afib was triggered. Now I estimate I am in afib less than 1% of the time, so should that continue forever into the future, I would be almost cured, and could probably stop taking coumadin. I might elect not to get a touch up ablation, and just live with afib 1% of the time. I am doing a lot of speculating now. I suspect that my symptoms in the future will be different than they are now. Maybe better and maybe worse.

After the ablation, Dr. Natale took me off of digoxin, which I had been taking before the ablation for years. He also said to stop taking Toprol XL after two months. So today is the day. I had been taking 50MG daily for years for rate control. Today I took only 25MG and will go to zero in a week or two if no problems. I feel better weaning myself off of that drug, after having read the PDR. If I get off of Toprol, coumadin will be my only remaining heart associated drug (except for one more month of Lipitor). If I continue to be in afib 1% of the time, I may need to abort stopping Toprol XL if my heart rate gets too fast without it.

Overall, I am much better than before the ablation. Am I a success story? It is beginning to appear to me that I may not be a 100% success story, but maybe much better. Time will tell. My mental state is good and I am fatalistic. Let's wait another month and see what happens. Until then, I am continuing to enjoy life.

Newman

Newman,

Thank you for checking in and letting us know how you are doing. I would have to agree, that 1% is a heck of a lot better than 25%, but you could definitely still see more improvement. Just keep enjoying life, and keep us posted about how you do, when dropping Toprol. I'd be very interested to know.

Richard

Newman,

I think the information sheet given out by the CCF may be correct for a number of patients; however Michelle has always stated two months, then at that time, depending on your symptoms, they would have a better idea as to how things might go. Since you are only in AF 1% of the time now I would guess that in another month things will smooth out. I have noticed on the maze board that some patients still have bouts of AF(maze surgery) after 5-6 months, but go on to become AF free. It will be interesting to see how you do.

Maybe if you stayed away from those beautiful, young, skinny, tan, Costa Rican women your heart wouldn't jump around so much, but, hey, you do gotta enjoy life don't you? What's a fella to do? Have fun and carry on.

Good luck to you & take care,

Jim

Newman,

I bet you get better, and make the 100% club. The PAC's last longer but for me they too have diminished greatly. My money is on you updateing us and saying its gone, hang in there!!!

Newman - I have to agree with your assessment of the CCF and their handling of the transmission of rhythm. I am constantly annoyed at how I am "processed" and each time I am handled differently. Only once was I able to transmit immediately. The other times were as you say - on hold, change phones, etc.

Aside from that, thanks for your very complete history of your progress. I think a report in this detail is important for anyone contemplating ablation so they know the possible quirks that can and do arise.

I feel as Jim W does that you are headed in the right direction and that ultimately, you will remain in constant NSR. I've mentioned before that my neighbor had ablation a few years back (most likely a slightly different technique and definitely a different EP) and she experienced a variety of pac's and ectopy for at least six months....it didn't unnerve her at all and she is now fine...so again - since we are all different, we undoubtedly will heal differently and in different time spans.

As long as your mental attitude is good, I can see nothing standing in your way of a complete and successful recovery.

I send you good wishes toward that goal.

Be well, have fun, enjoy life. Jackie

Newman: Thanks so much for keeping us all updated. I have a question: Have you tested yourself with increased exercise levels? If so how have you responded? Thanks!
Gary

Newman,

My guess is that if you forget about transmitting the "abnormal"
events to CCF and just live your life, that the 1% will go to zero
without you even realizing it.

thanks for the posts and good luck, althought I don't think you will need it.
you are almost there already.

Thanks, Newman,

Your posts are always very insightful and complete. I'm two days (17th) away from my one month anniversary of a PVA at CCF with Natale. I've been watching your progress and comparing it with mine. (and Jackie's - she was five days before me) I was in NSR, blessed NSR, for three weeks. Then, on the 21st day, I went into afib with chest pain...the pain was something new for me. Rate was in 150's. (Like pre-PVA) I knew I was in afib, but it felt different. The pain subsided, and the rate came down with Diltiazem and Flec.

Since then, I've had a trip to the hospital ER (rate and rhythm problems), had paroxysmal afib (50% of the time), been in bigeminy frequently, and only had a few brief periods of NSR. I've been a little discouraged, to say the least.

I agree with you on the follow-up with the arrhythmia clinic. Today, after two unsuccessful attempts to transmit, the lady handed me off to some "guy" who did get my reading. Since I was afibbing in the 130's, he asked if I was "walking around" while sending the tranmission. WHAT? Not only that, he didn't seem to know that I had a PVA THERE in November. It wasn't a horrible contact, but it was not particularly professional. I think this may be a weak link in the CCF process.

I'm convinced (again) that we're all different, and everyone responds differently to the procedure. I enjoyed NSR so much...after five years of paroxysmal, and then nearly persistent afib for most of 2003. Three weeks of NSR made me think it "worked." Maybe it still will. Let's both hope for "non-afib" existence! Thanks again for your exhaustive reporting - you've been an inspiration to me and many others.

Yours for N-O M-O-R-E A-F-I-B!

Billo

Garry,

I exercise little to none, and have not changed that pattern for 20 years. I get lectures from my doctors, friends, kids and myself that I should exercise. I do like to walk, but can't seem to get out the door. Once out the door, I enjoy long walks. My response is that I lead a very healthy life otherwise. Excellent diet, don't smoke, same weight as 40 years ago (160 pounds at 5'11"), no heart disease in my family, and cholesterol is O.K.


All others,

Thanks for your responses and encouragement.

Newman

Billo - I'm really sorry to see this latest development. What can I say?

I think that after our 3 month checkback, though, that we should all write a comment to the CCF ombudsman about the monitoring lab. I'm always in NSR when I call, but if I were in afib and received the typical run-around, I'd be really upset. You nailed it - definitely a weak link.

While I can see how you would be discouraged, I'm urging you to just go with the flow. There is a man here in my town who had the procedure and several others procedures at the same time...he was really in a bad way...and said it took the full 90 days to get rid of the intermittant afib...he said that on day 91 - no afib...92, no afib.... and continues several years later to be afib free. His lifelong dream was to climb Mt. Kilimanjaro - and after the ablation, he trained for a year and then was able to make the climb and plant his flag. I saw a video tape of his story. It was quite an accomplishment. He says to be patient.... I guess I have to believe him.... in the meantime, I'm sure for you, it is disheartening (no pun intended), but I know and understand how you must feel.

Hang in there - keep us posted - share your concerns. We all want to lend support.

Kind regards, Jackie

Newman: As Wayne and others posted, I predict that you will probably be posting in another 2 months (or a little longer, perhaps) that you suddenly realized that these unusual episodes have disappeared, and you cannot remember when you had the last one. Don't worry about transmitting those isolated incidents unless they are happening more frequently after 4-6 months. Then, you might need a "touch-up" which is usually a much quicker procedure at the CC.