Afib and heart failure

@katiekateny
Do you have access to a heart failure specialist? I have heart failure and see a HF specialist at Mayo Clinic Jacksonville along with seeing a EP for my electrical issues and my ICD/Pacemaker.

I know at Mayo Jacksonville anything that comes up about electrical my HF refers me back to EP. And EP will refer me back to HF with HF issues. But they both work as a team along with my PCP to ensure all concur with medications and treatments.

I was told by my EP (not my medical expertise) that the most serious risk of AFIB is stroke.
A HF specialist does go through additional training. I am lucky to have the Director of Mayo Jacksoville Heart Failure and Transplant as my HF doctor. Again not sure where you live but my suggestion maybe seeking opinion from a HF specialist regarding your questions.

Yes, I have both EP and HF specialists.
I am not sure they do talk to each other. Like I said, I have been run thru every test there is.

Yes, the immediate danger with Afib is risk of stroke, but once that is no longer n the table….there is still good reasons to reduce the Afib as much as possible. Namely, heart failure

This is also my understanding. There is some modestly strong evidence in the literature that the heart's size can reduce somewhat, even a lot in a few cases, once the arrhythmia is stopped and/or moderated a great deal. That was my thinking behind insisting upon an ablation, which I'm so very grateful worked on the second go. I have read numerous people claim that their atria have shrunk some, back to a near-normal size, while others insist it won't happen...and doesn't.

If I were you, I would have asked for clarification for his/her recommendation to cease the flec and metoprolol. But, it all depends on whether or not you are frequently in arrhythmia. If you're rarely in arrhythmia, then there won't be much remodeling going on, even if some is extant already. So, no need for medication. Keep the potency of the medication foremost for when you DO need it. But, if you're in arrhythmia two or three times each week, for years now, then I don't understand why the instruction you received.

@katiekateny
I think it is important that your EP and HF are talking to each other. Their treatments are so important to each other.

I am not familiar with watchman. Does it stop AFIB? Or does it just react to it. I am not sure how if removes stroke danger. AFIB means Atrials are not beating in sequence and not pumping like they should. My HF and EP says that can cause blood clotting.

Do you exercise? Has your HF advised of the importance of that to your heart health. I was able to keep my heart failure from getting worse (my heart was getting bigger and my EF was going down and down). Medications and exercise routine stopped the progression and had remained stable (but still very low at 25-30) but heart has stopped enlargement and EF remains stable. I am quite active and think that has played a big role in my HF treatment.

I have been told there are two types of heart failure: systolic and diastolic. When EF is low, the HF is systolic.

In my case, I have adequate EF, but I have been told that my heart is "thickening" and I have diastolic HF.

To circle back to the original question by katieketeny (who also has thickening), I am taking both Flecainide and metoprolol; both of which are prescribed by my EP and my cardiologist. I do not have a HF specialist.

While I have had AFib several times in the past (currently in NSR), no one has told me that AF could have caused this thickening, so I find that very interesting. FYI... I have been on Xarelto since my first instance of AF.

I have been wondering about this diagnosis of diastolic heart failure and what could have caused it since my EF is over 60. I am also concerned that it could be progressive.

Any information on Diastolic Heart Failure would be helpful. Thanks!

What is the status of your Afib? Are you still having events of Afib? I have read this a couple of times and it leaves us guessing as to what your status is?

@gloaming
"If you're rarely in arrhythmia, then there won't be much remodeling going on, even if some is extant already. So, no need for medication. Keep the potency of the medication foremost for when you DO need it. But, if you're in arrhythmia two or three times each week, for years now, then I don't understand why the instruction you received."
I think you are way out of your league making these kind of significate recommendation to a person in HR with a history of Afib. This is disturbing.

It's not a recommendation...it is an expression of reasoning. This is for the poster to consider, and is what the science currently supports. It's what the patient ought to be told by a cardiologist or EP who wishes to explain what they're doing, and why they're advising it.

Really, this isn't hard.... It also follows the procedures we use at affibers.org all the time....asking if they understand what they've been told, or to challenge the prescribing authority as to their rationale. Knowledge is power. Nowhere have I said, 'Do this and not that.'

My purpose is to coach people to advocate for themselves, and to be a major component in their own healing and treatment. Nobody can do that with poor understanding.

I will leave this discussion now permanently.

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.

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!