Genetic Afib and ablation

Good evening. I’m new to this forum and have found it very enlightening, there’s more information here than I’ve heard from my doctors.. My first question maybe there’s some thoughts here is with the success of ablation on genetic Afib. I’ve been told ablation is not as successful when the Afib is genetic which is certainly seems to be in my family.. My history? My father had Afib, had a pacemaker, (died of a heart attack at 79), his two sisters developed Afib late in life and lived into their 90’s, one of their daughters my cousin has Afib, 3 of my 4 brothers have Afib , one passed from Parkinson’s, but the other two have had Afib for a decade or more and have 10 ablations and countless- 40 + Cardioverisons between them. I developed Afib about 4 years ago, I’m 74 and in good health otherwise. I’ve been treated successfully with 150 of Flecanide, 50 in the morning and 100 at night and metropol with only a few breakthroughs each year [lasting 4-8 hrs]. Lately I’ve had more episodes and my EP is suggesting an ablation which I’m resisting based on my brothers’ experiences. Plus I realized that I switched Flecanide suppliers a few months ago, about when the breakthroughs started. The new supplier is a mail order pharmacy my Medicare company pushes and it was an entirely different pill. So I’ve gone back,to CVS for my Flecanide hoping that may be the answer.
Anyone here with a History of genetic Afib and ablation or thoughts on this? Thank you.

Shannon, one of our moderators, had a father who died of an afib related stroke and a sister with afib, where a botched ablation put her in nursing care for the rest of her life (Shannon had advised her to go to Dr. Natale, but Shannon was out of the country when she selected a different EP in another city). Shannon has had two ablations with Dr. Natale in Austin (one of the best, if not the best ablating EP's in the world in my opinion), the last one around 10 or more years ago and he's had no afib since.

The common advice here is to go to the very best EP you can, that is the ticket to a successful ablation. I'm sure others will chime in.

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LoisA
Good evening. I’m new to this forum and have found it very enlightening, there’s more information here than I’ve heard from my doctors.. My first question maybe there’s some thoughts here is with the success of ablation on genetic Afib. I’ve been told ablation is not as successful when the Afib is genetic… The new supplier is a mail order pharmacy my Medicare company pushes and it was an entirely different pill. So I’ve gone back,to CVS for my Flecanide hoping that may be the answer.
Anyone here with a History of genetic Afib and ablation or thoughts on this? Thank you.

Mail order in the hot summer diminishes the potency because drugs are at ultimate potency when stored between 68-77 degrees. Get it in person at a local pharmacy and see if you feel better.

On that note my AC broke Friday and it’s 90 degrees in the house and 110 outside. Maybe 112 today. I rented a hotel room to store my meds. We ended up staying there after I got tachycardia and dizziness at home. Yesterday I returned for a few hours and got tachycardia so I left to go back to the hotel. I brought a digital thermometer to the hotel and it’s blasting at 74. Cheaper than an admission to the hospital paying a copay and less wear and tear on my heart with questionable heated drugs. A bit of trivia- more women on birth control get unplanned pregnancies 9 months later in the east cost after a summer heat wave. Imagine how hot the truck delivering your meds gets?

I had multiple ablations. I’m told I have a genetic disposition to get them after ablations. Both my mom and I developed it spontaneously at the same time and were one bed apart in the ER. I got ablations. My mom didn’t get ablations and ended up with heart failure.

Interesting. The temperature yes, could have something to do with potency. I'm hopeful the meds from a retail pharmacy will kick in. But if not, ablation seems the only option. I read an article they are scrambling to find a gene therapy as more people are diagnosed. But may not be here anytime soon.

Thank you. There are not many options to consider but when you’ve tried everything, lifestyle, holistic, drugs, etc then ablation is the best and only option.

Lois, try retail pharmacy drugs (temperature controlled) instead of mail order and see if it buys you time to get on a pulse ablation trial

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susan.d
Lois, try retail pharmacy drugs (temperature controlled) instead of mail order and see if it buys you time to get on a pulse ablation trial

Or, better yet, time for pulse field ablation to be FDA approved. The trials are randomized so there is only a 50% chance of actually getting pulse field. Also, there are a lot of follow-up trips to the trial center.

I just spoke to Texas about pulse trial and it is definitely 50/50 at this time. I did inquire about the need to go back to Austin for followup visits due to the potential expenses (flight, hotel, etc). I was told only one followup had to be in person and it could be with a local doctor (PCP, Catdiologist, EP) as long as physical exam and EKG was done. All other visits could be done by telemed.

You may want to inquire about participating in the Admire PFA study; this is non randomized, all participants receive a PFA. Clinicaltrials .gov indicates that TCAI is currently recruiting; might be worth an inquiry.

They're excluding patients who've been previously diagnosed with persistent afib, which he has.

Your right, I hadn’t read the entire post.

Yes thank you. I am back on CVS. Fingers crossed.

I understand PFA can be a "safer" technology, but are there other benefits? May one hope the ablations being "better" because of this technology (other things being equal, of course)?

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LoisA
My first question maybe there’s some thoughts here is with the success of ablation on genetic Afib. I’ve been told ablation is not as successful when the Afib is genetic which is certainly seems to be in my family..

I don't know who told you that but they were wrong. The origins of the afib don't matter because however it started it's all the same once it does, and almost all afib has a genetic component. It may very well be the determining factor for all of us.

Read this post to understand why an ablation will be just as effective for "genetic afib" as any other kind of afib.