Ebstein's Anomaly + afib

Posted by soph @soph, Jul 7, 2019

Does anyone have experience with afib in 70s or 80s possibly caused by the rare genetic disease Ebstein's Anomaly? I'm 85 and have a lot of responsibilities and am wondering about mortality with this condition. Ebstein's pulls the atrium out of shape as it affects the tricuspid valve and probably causes the afib. I'm wondering if I'll slowly notice that I'm functioning worse or if I might die suddenly. I just went from one afib attack a year to one attack a week – still while feeling okay, exercising, etc.

Hi @soph that must be a frightening. I wanted to share a link to the Congenital Heart Disease page here on Connect as you may be able to find information on treatment options for and the latest info on Congenital Heart Disease: https://connect.mayoclinic.org/page/congenital-heart-disease/

I wanted to tag @rubywitch67 and @nene22 as they have experience with afib and may be able to offer you support.

Back to you @soph, how many weeks has this been happening? How long are the afib attacks?

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Hello, Mr. McConkey, yes, I've listened to the videos on Ebstein's by Mayo Clinic. Once I asked for a consult but Mayo only does this with doctors. It certainly sounds as if Mayo has more information by specializing and studying this. I'm not frightened as I go to exercise class, breathe well with no dizziness, often walk a few miles. For 3 weeks, I've had one afib attack each, lasting 7, 12, and 14 hours. Very conveniently, this was at night and I slept through a lot of this. Much more pleasant at home than as in the hospital where I've been 3 times for afib in the last 4 years.
I have no money to come to Mayo, I am hoping to get more information to share with my fine doctors at University of Vermont Medical Center. I'm a disciplined person and would do as advised. I take Dofetilide, Diltiazem and Warfarin, and have for 4 years. I've had one tiny heart attack with afib.
When I first knew I had Ebstein's, I read a lot, finally found a book that said we could live to our ninth decade if a mild case. So now, 85, I want more info about life with Ebstein's in that ninth decade! I don't think surgery is considered at 85. thanks!

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You are an inspiration! And I am sure you WILL live well into your nineties in relatively good health. My only piece of advice would be to avoid stimulants of any kind; alcohol, coffee, tea, chocolate, stress… Get plenty of sleep including a daily siesta. And keep doing whatever you are doing. I think your positive attitude is a huge plus. All the best!

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Thanks! Do you have any personal experience with Ebstein's?

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Hi soph…….I'm not sure why the moderator wanted to tag me in regards to your post about Ebstein's Anomaly. I don't have it, had never heard of it and didn't know what it was until I read your post. I was diagnosed with paroxysmal AFIB in August of 2018 and was put on Xarelto. My cardiologist and I decided that antiarrhythmics would not be a good choice for me, so in March of 2019, I had an ablation, and now, a little over 3 months post the procedure, I am happy with the results and hope I'm one of the lucky ones who don't need to go in for any "fine tuning." I am still on the Xarelto……my EP said in three months, if everything is still going well, we'll discuss taking me off that and going to aspirin therapy. That really is the long and short version of my AFIB history and experience, and as I said, never was there a mention of Ebstein's Anomaly, which I can only surmise WOULD have been discussed if it was present. I'm sorry there seems to be a mix up about who had what and that I am unable to offer any support or advice for this condition. I wish you the very best and hope you find a resolution. RubyWitch

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Thanks, Rubywitch67, I'm wondering how old you are. I'm 85 and few people over 80 have done ablations so far. Great that yours is working. An acquaintance in her 50s feels like a new wonderful person since her 2nd ablation.

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Not sure if I can help since I haven't been diagnosed for very long and I have never heard about Ebstein's. Maybe AFRobin's info can help but I have never followed any dietary restrictions. Everyone is different…..

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Hi @soph,

I thought you might be interested in viewing these discussions and Video Q&As where Mayo Clinic experts talk about congenital heart disorders, and you can also meet members like @uconn @rachelghaymond @michelle39 @lauragreyna @caleynkids who’ve talked about Ebstein's anomaly
https://connect.mayoclinic.org/webinar/webinar-topic-challenges-in-adult-congenital-heart-disease-what-the-patient-needs/

According to this information from Mayo Clinic,"If you have heart rhythm disturbances, medications may help control your heart rate and maintain normal heart rhythm. Your doctor may recommend surgery when your symptoms are affecting your quality of life. Surgery may also be recommended if you have mild symptoms but your heart is beginning to enlarge and your overall heart function is beginning to decrease.”
https://www.mayoclinic.org/diseases-conditions/ebsteins-anomaly/care-at-mayo-clinic/mac-20352135
Mayo Clinic doctors have extensive experience treating Ebstein anomaly. In fact, The Center for Congenital Heart Disease is an international referral center for people with Ebstein anomaly. https://www.mayoclinic.org/departments-centers/center-congenital-heart-disease/overview/ovc-20442398

May I ask if your doctor has suggested any treatment, @soph?

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@soph

Thanks, Rubywitch67, I'm wondering how old you are. I'm 85 and few people over 80 have done ablations so far. Great that yours is working. An acquaintance in her 50s feels like a new wonderful person since her 2nd ablation.

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Hi again soph…..I'm 68 years old. I HAVE noticed on this board that there aren't many people in the 80+ age range having ablations but I assumed that was mainly because their AFIB was under control. Is there a "cut off" age when EP's don't recommend the procedure? From the time I was diagnosed with AFIB until now, a little over 3 months post procedure has been less than a year. Needless to say it's been rather a whirlwind for me. There is SO much I don't know. Thank you for your kind words. I DO feel so much better now as the AFIB had pretty much destroyed the quality of my life. As I said, I hope I'm one of the lucky ones who don't need a second or even third ablation, but reading this board HAS prepared me for the likely possibility of needing another one down the road. At least I won't be as scared if I do! May I ask how long it was before your friend required her second ablation? I hope that you will soon get the answers you're seeking and any help you need to live to 105!
RubyWitch

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Hi, it was a few months between my friend's ablations. The 1st one worked for a short while. Now it's been over a year that she hasn't had afib and has felt great. Apparently they are beginning to give ablations to people in their 80s, but for the most part, any kind of surgery is more complicated as we age. Good luck!!

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Hi soph……yikes! Only a few months before your friend needed a second ablation! That's disheartening. (Pun not intended) But, on the other hand, her second one obviously fixed the missed spots and I hope that will be her last one. With the medical/surgical advances that have been made just in the last decade, I have read that it is becoming ever safer for older people to undergo procedures. You're only 85 and I'm sure you're not the only one with Ebstein's Anomaly. I would think they are working on a way to deal with that. Please don't give up hope. There was some hesitation regarding my ablation as I've got CAD (coronary artery disease) and two stents. I wasn't in on the decision making, but I'm very glad they decided to go ahead with it. My friend who just turned 91 recently had surgery for some bowel issues and she came through with flying colors even though she has pretty severe COPD and some other health issues. I wish ALL of us dealing with AFIB the very best outcome.

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Now I've found an interesting article about an 87 year old with Ebstein's. It makes me wonder-does Mayo ever operate on people in their 80's for EA? What is the Mayo experience with older people? Do we die slowly by getting weaker and weaker or is there a sudden collapse of the tricuspid valve. This is helpful information for getting affairs in order. I still feel like going to working and going to exercise class.

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