Take the small win and wait or keep pushing for the big win?

So I'm not sure if settling for where I'm at now is good, or if I should keep pushing ahead and try to get in a better position. Currently, five months post ablation. I went into AFIB about 4 days after the ablation and gave it some time and then did a cardioversion. I am currently taking 3.125 carvedilol x2, diltiazem CD 240 mg x1, multaq 400 x2, and Eliquis 5 mg x2.

Prior to the ablation, I was in long-standing persistent AFIB my average resting HR was about 100 the addition of medications brought it down to 88-90 bpm. I have tried a slew of medications and the current regime is the best for me to this point. My resting HR post ablation is around 73 and my BP is around 120/70. The difference from before and after the ablation is an increase in diltiazem from 120 to 240 and the addition of the multaq. I am also in NSR for the majority of the time and will now convert on my own (at least so far). It does typically take between 4 and 5 days to convert. My routines are consistent and very little change from day to day.

My EP has suggested waiting this out and see what happens. We both believe I will be back for another cardioversion before long. I seem to be having 1–2 episodes a month right now, and just recently had a spell of tachycardia where my HR was at 145 BPM for about 30 minutes. I'm just not sure if I should push harder for another ablation, or take the small win and be happy with the NSR I enjoy most of the time. For me, I was hoping to get off some of the medications, as I would prefer to not have to take them long term if possible, I'm 58 currently.

I know the choice is mine, but I am looking for some insight on possible outcomes. Or just some reassurance that holding the course is best for now. My anxiety is possibly getting the best of me, and it is good to some other perspectives on things at times.

4-5 days is a long time to remain in afib. How symptomatic are you?

Very symptomatic, it is better since the ablation and the increase in meds, my HR stays around 90ish opposed to the 120 plus it would go to when in AFIB. It also seems to be getting worse as time goes on. I was in AFIB for about 10 days last month total over two separate occasions. I feel like there is room for improvement, but my QOL is so much better right now, I don't know if I want to poke the bear yet or not.

I can only speak for myself, but when I was symptomatic, it was awful for me. I couldn't live that way. I began to lose ground in mood and in general health, and I looked it according to my wife and acquaintances. They told me I looked gray.

What you describe is, and again, this is strictly how I look at what you are saying and relating it my own experience...the slow train wreck that some of us seem to have to ride out as our disorder progresses. Clearly something has changed, and you are the best person to judge if it's a reasonable step forward. I see this as a glass half empty. I don't know what your burden was like prior to the ablation, or what it felt like for you, and how long you had been waiting for the EP's call. However, you are still taking at least four routine meds PO or BID, This is well beyond the blanking period typical for the heavy majority of patients post ablation. However, there are always individuals whose recovery is atypical, and you might be one of those. Maybe you're going to wake up in three months, now eight months post ablation, and find that you haven't had a PAC or a ripple of any kind in about three weeks, and you may feel you have finally settled down. Maybe. Would that be because your heart likes the meds, or because the results of the ablation vote are finally tallied and it's all good? How will you and your EP know?

I would not call this a win. If I get PACs every other hour, or day, and especially if it includes 20 minutes of AF, then your ablation has not succeeded in isolating your PVO (pulmonary vein ostia) electrically from the rest of the atrial endothelium.

On last thought: the disorder does tend to progress.....for most/all of us. It may be train-wreck slow, it may get really worrying inside of a whole month for some. The point is that the disorder is always looking for a way out of its constraints. Many of us have successful ablations, but any time after a year they can fail, and they're still termed a 'success'. One day, we get a surprising ripple of AF, and we know that the ticket has expired on the last ablation, and we must return again for a re-do. I don't think yours is likely to ever be termed a success by an educated EP with both experience and integrity.

I hope my thinking helps you in some way, hopefully not to be alarming. The longer your heart is wonky, the more it likes to be that way. We always encourage people to pester their specialists and to get things nipped as early in the game as possible so that the progression, if it is to be persistent, is at least retarded to the extent possible. Get on top of this train now.

That's a lot of drugs. At only 58 I would want a little bit more. If things don't get better and especially if they start going south, you might consider a surgical ablation like the Wolf mini maze (WMM). They seem to have much better results than catheter ablations for difficult to treat conditions such as long-term persistent.

Jim



Edited 1 time(s). Last edit at 02/11/2024 03:42PM by mjamesone.

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gloaming
I can only speak for myself, but when I was symptomatic, it was awful for me. I couldn't live that way. I began to lose ground in mood and in general health, and I looked it according to my wife and acquaintances. They told me I looked gray.

I would not call this a win. If I get PACs every other hour, or day, and especially if it includes 20 minutes of AF, then your ablation has not succeeded in isolating your PVO (pulmonary vein ostia) electrically from the rest of the atrial endothelium.

On last thought: the disorder does tend to progress.....for most/all of us. It may be train-wreck slow, it may get really worrying inside of a whole month for some. The point is that the disorder is always looking for a way out of its constraints. Many of us have successful ablations, but any time after a year they can fail, and they're still termed a 'success'. One day, we get a surprising ripple of AF, and we know that the ticket has expired on the last ablation, and we must return again for a re-do. I don't think yours is likely to ever be termed a success by an educated EP with both experience and integrity.

if it is to be persistent, is at least retarded to the extent possible

I agree, this is a slow train wreck sitting at the front window waiting for it to happen. The ablation is pretty much a failure, but it is a small win in that prior to the ablation I was 100% of the time in AFIB and no medication would keep me in NSR, now guesstimating about 15-20% burden while keeping my heart rate around 90 when in AFIB. Before the ablation I had been in AFIB for about 2 years never going into NSR, the only difference between days was how fast my heart would be running. Unfortunately, I am about where I thought I would be after the ablation. I was hoping to get off of some of the medications, though not increasing one and adding another. That is why I am asking here, just making sure my thoughts are in the right direction. I am extremely fed up with AFIB right now and might not be thinking clearly on it. I also don't want to take a step back if it can be helped. I prefer to have blunt thoughts on it, and you can't make me any more concerned than I already am.

Yes, difficult choice, but for me, your level of arrhythmia would not be acceptable and I would seek another ablation from another EP—one of the top tier bunch.

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mjamesone
That's a lot of drugs. At only 58 I would want a little bit more. If things don't get better and especially if they start going south, you might consider a surgical ablation like the Wolf mini maze (WMM). They seem to have much better results than catheter ablations for difficult to treat conditions such as long-term persistent.

Jim

This pretty much what I was thinking as well. I have looked into my insurance and I think it would cover Dr. Natale doing a second ablation. I need to do a little research on it, though. While I have started to look at the WMM, I haven't looked into it enough to make a decision yet.

It takes time for me to do the research and make up my mind if I think it is good for me. I will be looking into more as time goes on. Currently, I am better off than what I was before the ablation, but I guess I would like a bit more. I don't like the idea of being on medications that for years that could stop working at any time. At least that has been my experience thus far. New medications start out ok, but in a couple of weeks they seem to stop working for me.

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Daisy
Yes, difficult choice, but for me, your level of arrhythmia would not be acceptable and I would seek another ablation from another EP—one of the top tier bunch.

What Daisy said.

This isn't going to get better with drugs, and I don't see any gains in waiting. Afib lasting as long as yours does can cause electrical remodeling of your heart, which over time means you're more and more likely to experience afib. Hence the old saying "Afib begets afib." Since your afib was at one time persistent, that makes you a challenging case so a top tier EP is really who you need to do the procedure. I suspect that does not describe your current EP since the first ablation failed and he doesn't seem eager to try again.

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Daisy
Yes, difficult choice, but for me, your level of arrhythmia would not be acceptable and I would seek another ablation from another EP—one of the top tier bunch.

I have been looking into it and feel confident that my insurance would cover it. Just might have to reach out and see if it is possible. It is a difficult choice, my QOL is so much better right now, I don't want to mess it up. But I also know that I will have to have another procedure as time goes on, either way.

I think either an in person or video consultation with both Natale and Wolf might be helpful making up your mind. WMM, like catheter ablation, is widely covered by insurance.

Jim

Carey, I have to agree with you on this. My EP is very good and has worked/mentored with best. But in this case, going with the best is probably a better choice in the long run. I knew before the ablation that my odds of true success were slim, but I also knew the odds of coming in a better situation were good. I was at the point that I couldn't go on much longer. I also suspect that if I stop the medication, I would be back to persistent fairly quickly.

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mjamesone
I think either an in person or video consultation with both Natale and Wolf might be helpful making up your mind. WMM, like catheter ablation, is widely covered by insurance.

Jim

Still working up the fortitude to continue my pursuit and coming to the conclusion that this is not a long term solution. I already know that it is not, now working through the acceptance of the facts. Also, just wanting some other opinions to make sure I am not over reaching in what I would like.

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kliving
I have looked into my insurance and I think it would cover Dr. Natale doing a second ablation.

It takes time for me to do the research and make up my mind if I think it is good for me. I will be looking into more as time goes on. Currently, I am better off than what I was before the ablation, but I guess I would like a bit more. I don't like the idea of being on medications that for years that could stop working at any time. At least that has been my experience thus far. New medications start out ok, but in a couple of weeks they seem to stop working for me....Still working up the fortitude to continue my pursuit and coming to the conclusion that this is not a long term solution. I already know that it is not, now working through the acceptance of the facts.

Yes, as well as "wanting a bit more," being on medications like the ones you are on now, is not a long-term solution. You are right to do research and it does take time, but in that time you call call Dr. Natale's office (we can give you direct contact information) and you could start an enquiry as it would take several months before you could actually be scheduled for an ablation with him in any case. Meanwhile you could continue with your research.

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Daisy

Yes, as well as "wanting a bit more," being on medications like the ones you are on now, is not a long-term solution. You are right to do research and it does take time, but in that time you call call Dr. Natale's office (we can give you direct contact information) and you could start an enquiry as it would take several months before you could actually be scheduled for an ablation with him in any case. Meanwhile you could continue with your research.

I would appreciate the contact information. I have looked, and he does accept my insurance, but I have to work the insurance part to make sure they will cover it as he is outside my coverage area. It should be a matter of just getting approval first to make it happen, this is not usually a problem to see a specialist. While I understand my situation, I really wanted to make sure my expectations were in line with reality, so to speak. I don't even think my EP thinks this is a long term solution, pretty sure he is putting it off to see how much it changes or to see if it will stabilize more.

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kliving
I don't even think my EP thinks this is a long term solution, pretty sure he is putting it off to see how much it changes or to see if it will stabilize more.

I think he's engaging in wishful thinking. If it changes much, it probably won't be for the better, and it's not going to stabilize more. I think what you have now is the best you can hope for.

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I would appreciate the contact information.

Call:
Norma Bazerghi RN, MSN, MBA

Single Trip Procedure Coordinator forAndrea Natale M.D.

Texas Cardiac Arrhythmia

3000 N. IH 35, Suite 700, Austin TX 78705

Direct Line: 512-615-6205

Fax: 512-776-1978 Attn: Norma

Daisy, thank you for the contact information. I will call in a few days. I also want to thank every one for their comments. They are all inline with what I have been thinking. I guess I just needed some confirmation to what I thought.