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Family Ablations

Posted by LoisA 
Family Ablations
June 01, 2023 10:06PM
I thought I would share an update on ablations my family has had since I have written several times about the Afib genetic defect apparently that I and my siblings have ( and father, cousins and aunts and uncles…). Sadly, tragically, in April my older brother passed away 2 days after having a convergent ablation in Jacksonville FL. It was his sixth ablation, his first convergent. He was 76 and otherwise in excellent health. His previous ablation, 2 months,prior, never really kept him in NSR for very long. He was extremely frustrated and with his Dr, decided this was the answer .It shook my family to the core. It was so unexpected, he died in his sleep and and though he said this ablation was “rough” he was seemingly recovering. We are waiting for an autopsy report,
My ablation is now going on its 7th month, and while I have a few PACs here and there, I am living a life free of all drugs except Xarelto. It feels great, like my life is back for now and I hope for a long time. My cousin who is 70 is scheduled for Dr Reddy’s trial Pulse Field Ablation this Tuesday. In New York.She has been in and out of tachycardia Afib for months and is miserable, taking 300 mg Flecanide daily and up to 400 when her rate goes over 110 bpm. It’s a terrible way to live. I’m excited for her. Another brother, 70, is on year 4 of his 5th ablation and takes Tikosin twice a day religiously. He has been in NSR for 4 years. . His son, 30 has had one episode of Afib and keeps Flecanide handy as a pill in a pocket.
My EP ( Dr Weitz in Fort Lauderdale) promises that big money is being spent on Afib, looking for better drugs, better solutions. We can only hope.🙏
Re: Family Ablations
June 01, 2023 11:30PM
I'm very sorry to hear about your brother. That must have been shocking since the procedure is generally very safe.

And yeah, the afib gene seems strong in your family. (Mine too.) I've long been convinced that afib is primarily a genetic disease and the eventual cure will come from that arena, not drugs or procedures.
Re: Family Ablations
June 01, 2023 11:44PM
Condolences on the loss of your brother. Your cousin seems to be on the high end or even exceeds dosage guidelines for Flecainide. Carey did not comment on this so maybe it I am mistaken. Maybe the higher dosage, 400mg, is warranted during emergency-like situations. Take care, my friend.
Re: Family Ablations
June 02, 2023 12:05AM
Thank you. We live one day at a time and enjoy what we have. My cousin has been under her Dr. supervision to take 400 within 24 hours. It is the only thing that can convert her. And it exhausts her. The Reddy ablation can’t happen soon enough.🙏
Re: Family Ablations
June 02, 2023 12:09AM
Carry, I agree. Eventually they will find the “errant type ”gene. Until then improved drugs and ablations are all we have to deal with. Meditation, supplements, coconut water, breath work, etc can help but …..it’s bigger than that I’m convinced.
Re: Family Ablations
June 02, 2023 08:38AM
I am so sorry for your loss.
Please keep us posted on your cousin's Pulse Field Ablation trial with Dr Reddy’s. Wish her a successful procedure.
Re: Family Ablations
June 02, 2023 11:55AM
It would be a burden in life to accept that one's lineage is the single great determinant of one's health problems. It might make it more understandable, but not make it more easy to contend with. And I think the doctor is right, lots of cash being thrown at heart arrhythmias because the numbers are growing year by year.

I'm sorry to read that you have lost a brother, but I hope there's a miracle, and good science, that will help you to keep the other. Best of luck.
LLA
Re: Family Ablations
June 03, 2023 12:11AM
So sorry to hear about your brother, Lois. I also lost my older brother, due to an Afib related stroke. He was only 70 at the time and never had a chance to have an ablation. Since that was over eight years, I don't know if the newer anticoagulants were even widely used yet. It was before I developed Afib and I had very limited knowledge about Afib at the time. Looking back, if I only knew then what I have since learned on this forum, maybe it would have made a difference.
Best wishes for your good health.

~ Linda
Re: Family Ablations
June 04, 2023 01:39AM
Thank you Linda, I too have learned a lot on this forum. I am sorry to hear you lost a brother too. I urged my brother to read Carey’s post on how can you have multiple ablations and still have Afib before he made a decision.. My cousin had a stroke also but survived and has recovered -mostly, it was before she took Eliquis and was not considered high risk even though she had Afib for several years. She is going for her first ablation with Dr Reddy on June 6th.
Re: Family Ablations
June 07, 2023 11:04AM
Re: Family Ablations
June 07, 2023 05:10PM
Quote
PavanPharter
Genetics.
[www.ahajournals.org]

Prompted me to rerun Promethease on my 23andMe data to see if any updates.

SnP's:
2 bad
14 good (one of these says I have to lowest risk for afib - if I am a white woman ...)
17 not set

Years ago I was trying to see if my kids had inherited my risk (comparing my SnP's with theirs), and could not come to a conclusion. My daughter does have the low risk white woman variant. My dad's two brothers did have afib. I also saw it with my mom late in her life. I'd felt it in her pulse when I'd taken her up a steep (for her) hill, at the top. It had returned to normal after we got back to her dementia care group home. I threw a monitor on her and verified it with the monitor on another outing. I printed that out and showed it to her doc & we decided not to worry about treating it. All the relatives were older when they got it. My dad's brothers were pretty metabolically unfit - likely their path. I got it at age 49 (now 68) with a chronic fitness path that none of the older relatives pursued. My kids were active, but my son now is bedridden for a non-heart condition, so chronic fitness won't be his path. My daughter knows my story well and her husband has had afib for six or so years, so she moderates her activity. I've coached her husband and he's been able to keep his afib mostly in remission.
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