Afib and heart failure

Posted by katiekateny @katiekateny, Dec 29, 2024

My EP as told me to stop taking Flecainide and metoprolol.

I have been reading over these last several months. It seems that my heart failure is because of the walls (muscle) thickening. Once this begins it is progressive.

My cardiologist has run me through every test/procedure that exists…no reason for heart failure has been found other than it seems that Afib was the original cause of the “remodeling”

So, it seems to me that stopping Afib (slowing it down, stop for a while, whatever) would be critical. Then, why does EP think it is ok for me to stop flecainide and metoprolol?

I have a watchman implant that was successful…so risk of stroke is no more….but…while stroke is the biggest short term risk…what about this on going remodeling?

Anyone shed some light on this?

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@sjm46

I found your story very informative and I am totally empathetic to your concerns. I am newly diagnosed with A-fib and am extremely concerned with the "well, a lot of people have A-fib" and "it won't kill you" and "lots of people live with it--don't even notice the symptoms." I, for one, do notice the symptoms--almost every skipped beat since cardioversion--makes me anxious that I will go back to arrhythmia. I think you have every right to be asking why more effort isn't being exerted to contain the A-fib. I have read on various resources that A-fib is like a forest fire and it can be small or spread and eventually be totally out of control. I intend to ask my cardiologist for Plan B with my next appointment. What do I do if it starts up again! I am not willing to just "live with it" since your experience tells me that it has definite long-term consequences. Thank you for sharing!

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I have not been diagnosed with afib, but know I have it because can feel it. It was worse until I cut out all caffeine. But lately have been having short episodes of a few seconds to a few minutes. I am not a run to the doctor person because have never experienced help from them and am 76 yrs old. But I have experienced much help from info and changing habits and diet. With this new year I hope to get rid of the afib and another issue I have had for about 4 years. I will be doing some things different and let all know if/when successful and details of what helped.

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@jc76

I have never heard HF referred to as systolic or diastolic. The ventricles are the source of HF and you have a RV and LV. The LV is what pumps blood to the body the RV pumps blood to lungs.

My diagnosis showed my EF was confined to LV and was in the 40s, then 30s. and that is when I got as second opinion at Mayo Jacksonville. I had consultations there with EP and HF specialists and changed my medications and had a ICD/Pacemaker implanted in 2006.

My EF had remained stable now for almost 20 years around 25. Since I do not have HF on right ventricle I do not get short of breath. I am able to have no restrictions on exercise. I am told by HF that my body compensated very well from lower EF.

I think making the choice of second opinion at Mayo changed my outcome. Even though my EF is very low it is stable and not gotten any worse in almost 20 years.

I think my HF was caused by high blood pressure over many many years of not getting it treated. I also had a LBBB caused by a virus in LV that screwed up my electrial signals and did not know it was contributing to HF in LV.

I have not been told have thickening just enlarged heart which is usually caused (I am told by my doctors) that heart was working harder and got bigger. That is why BP and electrial issues are addressed to keep heart from working so hard via my HF and EP.

I don't think I was able to address the Diastolic HF you mentioned but I did try to address what expereince I do have.

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Diastolic heart failure is when the heart muscle walls cannot relax so the chambers cannot fill properly which in turn means it's hard for the ventricle to fill. In essence, the walls are too stiff.

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@leara484

Diastolic heart failure is when the heart muscle walls cannot relax so the chambers cannot fill properly which in turn means it's hard for the ventricle to fill. In essence, the walls are too stiff.

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@leara484
Thanks
I did not know this.
77 and still learning.

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@lindy9

I have not been diagnosed with afib, but know I have it because can feel it. It was worse until I cut out all caffeine. But lately have been having short episodes of a few seconds to a few minutes. I am not a run to the doctor person because have never experienced help from them and am 76 yrs old. But I have experienced much help from info and changing habits and diet. With this new year I hope to get rid of the afib and another issue I have had for about 4 years. I will be doing some things different and let all know if/when successful and details of what helped.

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I am 78 and I have no intention of "tolerating" A-fib if it breaks out again. All that I have read tells me that it should not be ignored, especially in the early stages where, as you have noted, there are lifestyle changes that can help to control it. I, too, have given up caffeine, chocolate and alcohol. Good sleep is important too, as I have learned. But persistent A-fib does eventually do damage to the heart walls and that is what I want to prevent. We may be older but we don't have to accept deterioration of quality of life so I hope you will go to a good cardiologist and get answers to all your concerns. If the doc doesn't take you seriously, I suggest finding one who listens! You wouldn't accept a lousy mechanic for your car, so don't accept a less than excellent physician for your heart and health! 🙂

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Is it possible to get a 2nd opinion from Mayo Clinic with only sending test information (from another teaching hospital, Stanford)?
My husband had open heart surgery at Mayo in 2012 and is having shortness of breath, diagnosed as needing a new aortic valve. Stanford is moving at a snail's pace and he needs help right away.
I would appreciate any thoughts.

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@elewis203

Is it possible to get a 2nd opinion from Mayo Clinic with only sending test information (from another teaching hospital, Stanford)?
My husband had open heart surgery at Mayo in 2012 and is having shortness of breath, diagnosed as needing a new aortic valve. Stanford is moving at a snail's pace and he needs help right away.
I would appreciate any thoughts.

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@elewis203
I know many other health facilities will give second opinions after sending medical information to them. I did this with UFHPTI. I am a Mayo patient but wanted a second opinion. Mayo sent my medical information to UFHPTI (must sign consent forms but UFHPTI handled it).

I then got a second opinion from them in person.

Not sure which Mayo Clinic you live closest to but call them. Also consider Cleveland Clinic another outstanding heart specialty clinic.

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@lindy9

I have not been diagnosed with afib, but know I have it because can feel it. It was worse until I cut out all caffeine. But lately have been having short episodes of a few seconds to a few minutes. I am not a run to the doctor person because have never experienced help from them and am 76 yrs old. But I have experienced much help from info and changing habits and diet. With this new year I hope to get rid of the afib and another issue I have had for about 4 years. I will be doing some things different and let all know if/when successful and details of what helped.

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@lindy9
To self diagnose whether you have AFIB or not is not something I would do. I respect your right to your body and thus your decisions so I am just speaking for me.

Do you know if AFIB or PVCs. Without at cardiologist running a ECG would be hard to diagnose. These days great medications out there to help with both AFIB and VFIB and PVCs.

I think if you went to a outstanding facility like Mayo or Cleveland Clinic your opinion of medical institutions may change. I can only tell you my expereience at Mayo Jacksonville has been outstanding and all my doctors and specialist work as a team.

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@elewis203

Is it possible to get a 2nd opinion from Mayo Clinic with only sending test information (from another teaching hospital, Stanford)?
My husband had open heart surgery at Mayo in 2012 and is having shortness of breath, diagnosed as needing a new aortic valve. Stanford is moving at a snail's pace and he needs help right away.
I would appreciate any thoughts.

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My humble opinion is to fight like the devil to get his treatment as soon as possible. Raise the roof, go get a second opinion and find someone who will take this seriously. This is your life and your loved one! Don't take no for an answer! You can not be passive and survive in the current healthcare system! I told the last doc that I wouldn't leave until I got "fixed" with a plan. I am a former nurse and I can tell you, there are A+ docs and C- docs and you need to find one who listens and is empathetic! Best of luck to you!

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@jc76

@lindy9
To self diagnose whether you have AFIB or not is not something I would do. I respect your right to your body and thus your decisions so I am just speaking for me.

Do you know if AFIB or PVCs. Without at cardiologist running a ECG would be hard to diagnose. These days great medications out there to help with both AFIB and VFIB and PVCs.

I think if you went to a outstanding facility like Mayo or Cleveland Clinic your opinion of medical institutions may change. I can only tell you my expereience at Mayo Jacksonville has been outstanding and all my doctors and specialist work as a team.

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Thank you for your concern, however.... 1 I have been reading for months the comments on this blog, what people experience with the meds and treatments. Some work, some for awhile, and the side effects of the meds. What goes on with the treatments, and no thanks. 2 I now live in another country for over 10 years, and they have what are considered excellent docs etc.

Although there are different names for the heart beat problems, I had serious episodes for 7 years from age 14=21, and learned some people are extremely sensitive to caffeine. I quit and did not have problems until age 75 when I was eating coffee ice cream made in the US, and realized that was the problem. Since then have had minor issues.

I will make some add'l changes and see what happens. Was talking to my sister last night and she and her husband had gone to docs and they did umpteen tests and said they could find nothing. That is why I don't go. Been there and done that.

I am not interested in spending the rest of my life having tests, reactions to meds which I always have, and yucky treatments. I know how they do in the US surrounded by teams. If I would have something done it would be here. Nine years ago, I had a cancer on my cheek. He examined it, opened a book and showed me the type I had, and dug a small hole to remove all the same time, and was healed and cannot tell I had a problem. The whole procedure with antibiotics cost equal to $140. In the US there would have been visits and team of doctors and bills and stress.

I could write a book on the ridiculous experiences I have had with docs that did not help. We are all different, but for me, knowledge, habit and diet changes to get rid of the root of the problem, and prayer work for me. We will all die of something, but for me it will not be because of drug reactions, icky treatments, teams of doctors, or in the hospital, and I have seen what occurs there in the US and here.

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@jc76

@lindy9
To self diagnose whether you have AFIB or not is not something I would do. I respect your right to your body and thus your decisions so I am just speaking for me.

Do you know if AFIB or PVCs. Without at cardiologist running a ECG would be hard to diagnose. These days great medications out there to help with both AFIB and VFIB and PVCs.

I think if you went to a outstanding facility like Mayo or Cleveland Clinic your opinion of medical institutions may change. I can only tell you my expereience at Mayo Jacksonville has been outstanding and all my doctors and specialist work as a team.

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Add to my post, and I apologize for the length. My friends aunt was diagnosed with stomach cancer at age 80. She was told that she needed an operation, chemo and radiation. She said No!

They told her it was her only hope or she would die soon. She lived 12 more years. A friend had breast cancer. She did it all, lost her hair, and spent the last year of her life in doc office, hospital, etc. until she died. She like many others I know ended up saying, if they could do it over again, she would not have gone that route.

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