Cardiomyopathy

My ablation for long standing Lone Afib was done 3 years ago. It was successful although I was never able to return to my preablation moderate exercise..

A month ago I was pulling in a King Salmon off the Alaska coast and developed chest pain. It wasn't that bad and I was able to continue fishing. Stupid maybe but that is what I did. Pain was behind my sternum and between shoulder blades and vomited once. Hoped it was sea sickness! The chest pain wasn't nearly as bad as what I had experienced the day after my ablation in Austin 3 yr ago. Then they told me to go home and take pain pills.

Now an echo and heart cath show cardiomyopathy. Coronary arteries are normal and there is no plaque. They are calling it Stressed Induced Cardiomyopathy for lack of a better term. I've been put on beta blocker and Eliquis until a TEE and appointment with Dr. Natale in a month. There are no other health problems.

Has anybody had any experience with this?

Hi Betty,

Im sorry to hear of your cardiomyopathy diagnosis. It's possible the long standing persistent AF may well have encouraged a degree of cardiomyopathy previously, even with good rate control ... assuming you have fairly decent rate control prior to your ablation when you were in LSPAF ... rate control only slows down the onset of AFIB-induced cardiomyopathy, not necessarily prevents it while you are still having AFIB.

Once NSR is restored though most folks mild to moderate cardiomyopathy will start to reverse to some degree. However, if one has a long history of fibrotic scarring in the heart from years of AFIB, that can reduce by a good amount the degree of recovery of such things as dilated cardiomyopathy even after NSR is restored. We all know AFIB can dilate not only the two atria but the overall heart can get enlarged some too.

If fibrosis/scaring of the atria has progressed beyond a certain extent, that can reduce the degree of reverse remodeling one experiences even after NSR has been reestablished. The NSR certainly is a huge plus in any event, but there can be a limit on what degree of reverse remodeling that occurs in folks with more extensive and longer term fibrosis that is very unlikely to undergo reverse structural remodeling beyond a certain degree of spread of the fibrosis and length of time in which the fibrotic scarring becomes irreversible regardless of what we do.

All the more incentive for others here who might still be having too much AFIB and are hemming and hawing around about getting an expert ablation if they objectively are a great candidate for one, for them to not procrastinate too much longer once they have tried all the natural and medical life style risk factor improvements for a year with real dedication and yet are still having even a modest degree of episodes of AFIB/Flutter.

Hopefully, in your case your added stress with the big fish just put a temporary overload on what might be a more prone to cardiomyopathy heart and hopefully it will settle down again and get better still with time and not overdoing it.

Many EPs and Cardio researchers even view AFIB as a signal and manifestation of an underlying kind of core cardiomyopathy as it is,

Im glad you will get the TEE with Dr Natale and he can fill you on the next best steps for you.

Take care Betty and take it easy too! At least until Dr N gives you the okay to resume wrestling King Salmon again.

Shannon



Edited 2 time(s). Last edit at 08/01/2016 01:37PM by Shannon.

BStevens:

I'm reading your post differently than Shannon. Sounds like your exercise capacity was reduced right after getting an Ablation. Is that so? or are you referring to your exercise capacity even before you had AFIB?

Who did the first Ablation? Sounds like the question of Ablation-induced Cardiomyopathy would be a good one to pose to Dr. Natale.

Cardiomyopathy can be caused by many things, or a combination of things, and could be caused by something else than your AFIB or Ablation. Having said that, my understanding based on my own personnel experience and research with Cardiomyopathy and Permanent/Persistent AFIB, is that rate control does prevent AFIB related Cardiomyopathy at least if its because of an uncontrolled HR, and also that rate control whether still in AFIB, or NSR can reverse TachyCardia-induced Cardiomyopathy after it occurs.

Hello Betty - So very sorry to read about your dilemma. Did they give you your ejection fraction number?

While you're waiting for answers regarding your heart function, you should be aware that supporting heart function with Coenzyme Q10 (ubiquinol) along with d-Ribose and L-carnitine (along with the key electrolytes) helps patients with Cardiomyopathy so they have better pumping action. As we age, it's common have lower CoQ10 levels and with the long-standing AF, as Shannon points out, that doesn't help either, but you certainly can help support nutritionally the various functions so you are able to enjoy better performance -- even a small improvement can make a difference.
There are encouraging reports and and studies confirming this important finding although you probably won't hear about it from the doctors so if you'd like some of the report links, let me know and I'll provide them.

I'm sure this is very distressing and I certainly have the very best wishes for you.

Kind regards,
Jackie

Anti- AFIB,

Rate control can indeed help prevent and in most cases reverse AFIB induced cardiomyopathy, but not always. It is my understanding that Betty at some point prior to her ablation procedure was symptomatic and with less than perfect rate control (80bpm or less). For most people with ongoing AFIB maintaining ideal rate control is not so successful long term.

It still tends to vary up and down often ranging from 80 to 110 or at times a bit higher even when taking a fixed regime of rate control. many others find a good working dose of BB or Calcium channel blocker that does keep things pumping well with rarely going above 80bpm resting HR ( exercise of course is another matter and not a real issue here unless intense exercise leads to excessive periods of higher speed tachycardia before slowing down again).

But when the long standing persistent afibber has less than stable rate control, or just get complacent over time and fails to pay attention to it any longer and they wind up having excessive periods in the 110 to even 120 range and more or less accept that as okay and they don't work to keep a tighter control over their rate (a situation that not infrequently happens as additional remodeling occurs and the average AFIB baseline rate changes and then requires higher doses or change of meds) then a much slower onset cardiomyopathy can still occur.

In Betty's case, my reference was more to the possible influence of any progressive fibrosis she 'may have' (I don't know to what degree, if any, she has fibrosis but typically progression and spread of fibrosis is more common the longer term one has had AFIB and the greater the accumulated AFIB burden, though this is not invariably the case). The point being that should, as an LSPAF patient with a high odds of having moderate to significant fibrotic changes, such scaring if good amounts in her case can indeed reduce the degree that her heart can undergo complete reverse remodeling even after regaining pure NSR.

In other words, undergoing a more complete reverse remodeling as might well be expected if NSR had been restored when fibrosis has not progressed beyond the 'tipping point' (as discussed in a study by the Intermountain group in Utah in a 2014 AFIB Report issue) beyond which its no longer possible to reverse those structural fibrotic changes ... such a scenario could leave one more prone toward even a 'stress induced cardiomyopathy' as she was initially diagnosed with after her recent fishing incident.

Certainly, this possible association is mostly conjecture of what might have contributed to her cardiomyopathy and her follow up with Dr Natale will no doubt bring more clarity to her situation and we all hope this is a temporary event as it is.

But when it comes to rate control, it is still a compromise and for some folks when weighing their overall healthy status, age, life-style, preferences etc, it may well be a reasonable choice for a good number of folks, but it is not a black and white panacea for all possible issues that can arise from living with ongoing AFIB, by any means! In spite of what some cardio's and even clinical only EPs might say.

Without question, rate control is a huge plus over uncontrolled persistent AFIB, but it also often takes real work too and not getting complacent and letting the heart drift up above 100bpm too often etc which a lot of people do once they have been comfortable in the 70 bpm to 90 bpm range and then just don't pay much attention when those numbers move up by 20 or so points which can allow a very gradual onset of classic cardiomyopathy changes to occur even when on a fixed dose of rate control.

In Betty's case too, it is also possible her recent first experience with cardiomyopathy may not have been related to AFIB or previous fibrotic changes in the atria at all ... And on the other hand, a number of core AFIB scientific researchers including Drs. Stanley Nattel, Jose Jalife and others have posited that AFIB may well be a kind of canary in the coal mine signaling the onset of an underlying fundamental form of cardiomyopathy, that is largely subclinical for many years. Much more research is being done along this avenue as just one of many branches of investigation into true core causes of AFIB.

Shannon



Edited 1 time(s). Last edit at 08/01/2016 07:14AM by Shannon.

My ablation in June, 2013 was for long standing paroxysmal a-fib, vagal type. Episodes were highly symptomatic with rate of over 200. However episodes resolved within 18 hours. My resting rate was around 40 when not in a-fib. At the time of the ablation by Dr. Natale, my echo was normal. Dr. Natale said he did not find any fibrosis. The ablation stopped the A-fib and reset my heart rate to 80-100, sometimes higher. Natale's office offered me a beta blocker if the higher rate bothered me. Since it didn't bother me, I didn't take it. Maybe I should have and it would have slowed the cardiomyopathy.

Yes, my exercise capacity was reduced from the time of the ablation. Preablation, when not in a-fib, I had excellent tolerance for exercise. If an ablation can cause cardiomyopathy or precipitate it, I may be an example. Pulling in the 10 pound salmon on vacation must have put an overload on my more prone to a cardiomyopathy heart, like Shannon suggested. It will be a question for Dr. Natale.

Jackie, my ejection fraction is 40% now. Thank-you for your suggestions. Am willing to try most anything. I have an AliveCor/Kardia monitor and take readings most days. Occasionally it says A-fib. It showed afib the day I was reeling in the salmon with chest pain. I showed the tracing to my local EP and he said he couldn't be sure if it was or not. On occasion the monitor says A-fib briefly but I am asymptomatic. At the doctor's office these days, it says sinus rhythm.

The local cardiologist has started Carvedilol, a beta Blocker, and doubling the dose every 2 weeks until I get to 25 mg twice a day. It is helping to slow my rate down and I feel better. Dr. Natale wanted me to stop the baby ASA and take Eliquis until he sees me after the TEE and of course I'm following his instructions. I hope he can put the pieces of this puzzle together.

Betty - Definitely, consider that regimen. A number of years ago an member here had severe cardiomyopathy with an EF in the teens. He was able to enjoy some improvement in ability to function ..... but his case was long-standing and very serious. However, he did notice some relief which he called a blessing. Send me a PM and I can help you with more detail and offer suggestions on the form of CoQ, etc. I'm so very pleased you will be in Dr. Natale's care.

Jackie

Betty:

Sorry to hear about your diagnosis. If I'm reading your story correctly you had the ablation 3 years ago by Dr. Natale and afterwards he said everything was fine - no fibrosis, no afib, and your heart was perfectly normal. You spend the next 3 years in NSR and now suddenly out of the blue you have cardiomyopathy??

Stressed induced cardiomyopathy is usually temporary and is usually caused by a sudden stressful event - death in the family, divorce, car accident, etc.

Did you experience any kind of stressful event(s) in the past 3 years? Was there anything else going on in the past 3 years that might have caused this? I just think it's kind of scary to think that someone can be totally normal after an ablation and then bam, three years later for no reason at all you have cardiomyopathy.

Does cardiomyopathy run in your family by chance?

I hope you keep us posted on what Dr. Natale has to say after you meet with him and I wish you the very best!!

Travis

Travis,
Yes, I've been fine, I thought, since my ablation 6/2013. Saw Dr. Natale a year ago for a recheck appointment and he thought I was doing great and so did I. The only difference I noticed between myself and others who post here is that I never was able to run after the ablation without getting short of breath. I never complained about it as it seemed a small price to pay to get rid of the A-fib and rid of the bradycardia too. I thought life was great once again. Yes, suddenly out of the blue I learned I have cardiomyopathy.

The cardiologist thought the stressful event was reeling in a salmon while on vacation since that is when the chest pain occurred. There have been no stressful events in the last three years which might have caused this. Cardiomyopathy does not run in my family but other family members have had a-fib. It is my understanding that happy events can trigger cardiomyopathy also.

Yes, it is scary to think that someone can be totally normal after an ablation and then bam, three years later learn they have cardiomyopathy. The local cardiologists don't think it is associated with a-fib since I don't have a-fib now. I'm not so sure there isnt a connection so asked for help from this forum. Shannon has pointed out that some researchers think AFIB may signal the onset of cardiomyopathy.

I appreciate the comments, questions, and support from people here. Thank-you.
Betty

Was very nice catching up with you on the phone today Betty,

I had thought I remembered when prior to your 2013 ablation you were having some fast and very symptomatic episodes .. glad to see my memory is still somewhat intact :-).

Am passing along the info as we discussed and I look forward to hearing what Dr Natale says after reviewing your full record. You cardiologist is right for sure in that whatever the etiology of your stress-induced cardiomyopathy, it is unusual and not a common outcome of either typical AFIB alone that is reasonably managed and not common at all after ablations.

I'm hoping too that this is a temporary occurrence and before long you will return from the 40 ejection fraction your cardio measured to at least above the 50 EF marker and well into normal territory again.

Its good to hear you are feeling some improvement too Betty.

Take care,
Shannon

Thanks Shannon for your help. You are a valuable resource for us.
Betty