hello you lovely peeps, I am now 15 months since mini maze and was over the moon this morning to be able to jump off a mountain and paraglide over Cape Town without even an ectopic. I’ve got to admit I had prepped myself that bigeminy may raise its head again but nope, it left me alone.
freedom from afib : hello you lovely... - Atrial Fibrillati...
freedom from afib
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MummyLuv
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Woooooah. Fair play!! 😁🙈
I am scared of heights so that was a real out of comfort zone experience 🤣🤣
Well if that don't do it, nothing will!!!I'm celebrating 11 weeks of NSR...with a cup of tea. Too scared to get excited!! 😆
Yay 11 weeks, when you get out blanking you can push the boundaries, will I see you being a dare devil 😈
I'm 8 months post ablation (3rd attempt). It took 5 months to "kick in". Being very, very careful. But really fancy a beer!!! 🤫 Think I might skip the paragliding!! 😆
Hope to hear you have a beer in hand soon
Wow , that's brilliant . What an experience for you, well done! 👏
Woohoo! Great to know there is life after AF! Sadly my 15 month 'anniversary' is the length of time in persistent AF awaiting cardioversion! (9mths before 1st DCCV 8mths in lovely NSR but 6mths since relapse with DCCV next month!) Carry on enjoying life and inspiring your (ex) fellow sufferers to look forward to the future!
Goodness, really hope you can get a more permanent solution (I know mine may not last for ever but I’m enjoying it whilst it is)
Curious why it takes so long to get the cardio version????? You need it NOW!??
2-3mth waiting list, 8-9mth for ablation..
Wow. How can this be? Something like a CV is a life changing event in my situation….I could wait a day or two. But I couldn’t make it much beyond that when I am out of NSR. I guess my location (US) has some benefits ? 🙏 (is this forum just for UK and European patients??? - if so, my apologies)
No, it’s for us in the US too.
Hi
Need a ECHO first.
Any structurally abnormally stops cardioversion, ablation or any anti-rhythmic meds.
It shouldn't be an automatic procedure.
I'm never in NSR. I have persistent. The rapid bit is under control with 60s Day and always 47 Night.
cheri JOY 74. (NZ)
Mini-maze cardiac recovery AFIB free and ‘over the moon’ and flyin free. Was your cardiac mini maze down in Cape Town?
No, mine was done in London by a surgeon normally based at the northern general in Sheffield
I’m hoping to have an appointment soon with an EP at Northern General. Are you able to give me the name of your surgeon who did the mini maze please?
Of course, it is Mr Steven Hunter, he is a cardio thoracic surgeon so a diff dept but I am sure they will know him. Good luck with your appointment
Many thanks for sharing your experience and your surgeons name. It's good to know. Best wishes.
BobDVolunteer
And there's me thinking you were sane!
you go girl, I’m only 12 months behind you and also intend to enjoy every minute.
Yay! Wonderful news!! Thank you for sharing xxx
Hope you are well
Feel great,had a bit of AF few days after coming down from 100mg flecanide to 50 ( on EP plan) so on list for possible touch up. He put me on as a precaution he said ,as at least months wait for RF here. Watchful waiting!Currently sporting a Holter only 24 hours though, for valve checkup.
Really so pleased for you xx
Hi, I want to tell how awesome I am feeling after the Wolf Mini Maze. Thank you for your posts.
Go for it and enjoy life. Lovely to see you with your life back. I am going to be joining your little club in September, but I think I will pass on paragliding🤣.
Wow, what a brilliant experience! You go for it girl😀 Mind you, I’ll just stick with waving to you from the ground if that’s ok - it’s making me dizzy just thinking about it😂
Brilliant news .. but just a reminder to all of us with persistent or permanent AF, is that we can still enjoy all of these activities and I was paragliding myself in Greece earlier this month listen to your body, eat healthier regular exercise plenty of water and don’t let this pesky thing control your life..Stay Well.
Wonderful Steve and great advice!
Seeing your post Steve I wonder if you have a drink now in persistent. I’m the same since last September but haven’t drunk alcohol yet as it was a trigger for PAF. I’m scared it would revert back??
Hi Fibber223.. Yes I do enjoy a social drink a pint of beer a couple of glasses of wine with dinner and the occasional G&T or Scotch with a dash of cola and I find it has no affect whatsoever and of course everything in moderation.I never have been a heavy drinker because I enjoy it and have witnessed the effects of alcohol..Never smoked and eat what I consider a balanced healthy diet and live my life to the full still riding my motorcycle and regular exercise fast approaching 70..our condition affects a hundred people a hundred different ways but I am determined it does not control my life and prevent me from doing the things I want to do..all of course with moderation.
Stay Well.
Did you ever have PAF & did you drink then? I’m asking because it was a trigger for PAF for me.
I was completely unaware of my PAF until I was having a knee procedure probably some 10 years ago I woke up to find everyone in a panic and then the awareness of AF began.. i have had several leg procedures due to racing motorcycles but was completely unaware of any previous episodes of AF..I have always enjoyed drinking socially but would never consider myself a committed regular drinker I can go months without any alcohol. I have had 3 attempts at Cardioversion the first being successful then Covid hit and the follow ups were delayed for 2 years so I have no idea how long the first Cardioversion lasted.my medication is Edoxaban Bisoprolol and Losartan.. I have made enquiries with both my EP Cardiologist and GP about the MiniMaze procedure and if this is possibly an option but I might as well have speaking a different language as none we’re willing to discuss the procedure due to lack of awareness..
Well done, it made me wonder where Mr Hunter learned the technique,seeing as it's such a rare operation ?
It was created by Dr Cox in the US as an open heart technique, very brutal as was originally cut and sew but worked and only done with other heart surgery. This was then developed to use RF. another US surgeon working with Dr Cox developed a minimally invasive technique. This is the one which has been learnt throughout the world with local adaptions made depending on that surgeons belief. Mr Hunter trained in the technique back in 2003 and has been adapting it to be less and less invasive since then. Dr Wolf believes that afib is vagal and so has his own adaption which does not include the maze itself on the back of the heart. Hope helpful.
Impressive knowledge 👍Its amazing,I'm only 10 miles from the northern general & until you posted about your operation,i & most people on here had never heard of Mr Hunter 👍👌
An inspiration to many people, well done!
Your pic & smile will give people hope 😁
I was actually quite amazed, I did expect to feel a bit dizzy from the adrenaline triggering ectopics but happy that never happened
The ultimate test and you passed with flying colours 😁
Fantastic, you’re an inspiration.
Awe shucks, hope you are well
Thanks! I’m fine. Stuck in AFib, but apart from daytime sleepiness and being a bit slow on hills I’m ok really. Grandchildren keeping me busy.
Congratulations!
I have been free from Afib for over 8 months due to self-imposed changes in behavior (diet, exercise and other), but I have yet to feel the urge to jump off of a mountain!
I hope you continue to be Afib free and have all safe landings.
Sounds inspiring. Would be good to hear a bit more about your story.
Sorry for the length of this repost!
Cardiologists and EPs ignored me when I explained that every onset of Afib was set up by a build up of trapped gas over a couple of days. They murmured uh-huh's while more-or-less rolling their eyes. I went to several GI's who had no interest in the Afib-gut connection, but I finally got tested and diagnosed with celiac disease, which set me on a path of sorting out foods I could eat with less gastric distress.
I am carefully following a gluten-free diet, and I avoid vegetables and fruit that tend to cause gas or be hard to digest (cucumber, broccoli, brown rice, peaches and more). I also am careful to avoid constipation, which traps gas. I found on this forum a recommendation of prune juice with a table spoon of chia seed/ flax seed combined which helps digestion, which I take when needed. The goal is to reduce the buildup of trapped gas which tends to irritate the vagus nerve, especially when I lie down. I still sleep with my upper back elevated and my head up and to the side to reduce chest gas and sleep apnea issues.
I exercise at night a few hours before bed in order to further relieve gas and keep my heart and body fit. My exercise is an hour or more of walking every night interspersed with alternating weight lifting one night and squats the next. I don't want to try to guide your exercise choice because it depends on your own physical conditioning and needs.
I lost a lot of weight on my new diet and from eating smaller meals to ease digestion.
I was able to get off of or sharply reduce my BP meds (beta and channel blockers) which I suspect helped my heart be more stable.
On advice of my doctors, I would be deeply into risky meds and ablations by now rather than making dietary and lifestyle changes (e.g. losing weight and exercising regularly, no alcohol...) which have, thus far, been very successful in alleviating Afib.
The identification and elimination of irritants of the vagus nerve as triggers for Afib seems to be only recently recognized by some studies and doctors as a treatment for Afib. No doctor ever referenced it to me. One EP told me 9 months ago that I could "try changing my diet to reduce gas, but it will not reduce your Afib." I went from 12-24 hour episodes every two weeks, to one 5-hour episode in 8 1/2 months. I have been operating on the idea that a preventive beats a cure, and that if we don't understand the cause of an ailment, the meds and treatments are "shooting in the dark" to a large extent.
I know each of us is different, and that I am one case, but from reading comments from others on here, it is clear that the possibility of an Afib-gut connection should be front and center in the diagnosing and, in many cases, treatment of Afib.
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Thank you. Really inspiring. I am beginning of journey but good to hear you can make a difference.
HI fibnum, I am struggling with food choices, everything seems to trigger me lately, so I would love to know what changes you made to diet. And what kind of exercise? Walking used to help me but not so much now. Thanks so much! Diane
Cardiologists and EPs ignored me when I explained that every onset of Afib was set up by a build up of trapped gas over a couple of days. They murmured uh-huh's while more-or-less rolling their eyes. I went to several GI's who had no interest in the Afib-gut connection, but I finally got tested and diagnosed with celiac disease, which set me on a path of sorting out foods I could eat with less gastric distress.
I am carefully following a gluten-free diet, and I avoid vegetables and fruit that tend to cause gas or be hard to digest (cucumber, broccoli, brown rice, peaches and more). I also am careful to avoid constipation, which traps gas. I found on this forum a recommendation of prune juice with a table spoon of chia seed/ flax seed combined which helps digestion, which I take when needed. The goal is to reduce the buildup of trapped gas which tends to irritate the vagus nerve, especially when I lie down. I still sleep with my upper back elevated and my head up and to the side to reduce chest gas and sleep apnea issues.
I exercise at night a few hours before bed in order to further relieve gas and keep my heart and body fit. My exercise is an hour or more of walking every night interspersed with alternating weight lifting one night and squats the next. I don't want to try to guide your exercise choice because it depends on your own physical conditioning and needs.
I lost a lot of weight on my new diet and from eating smaller meals to ease digestion.
I was able to get off of or sharply reduce my BP meds (beta and channel blockers) which I suspect helped my heart be more stable.
On advice of my doctors, I would be deeply into risky meds and ablations by now rather than making dietary and lifestyle changes (e.g. losing weight and exercising regularly, no alcohol...) which have, thus far, been very successful in alleviating Afib.
The identification and elimination of irritants of the vagus nerve as triggers for Afib seems to be only recently recognized by some studies and doctors as a treatment for Afib. No doctor ever referenced it to me. One EP told me 9 months ago that I could "try changing my diet to reduce gas, but it will not reduce your Afib." I went from 12-24 hour episodes every two weeks, to one 5-hour episode in 8 1/2 months. I have been operating on the idea that a preventive beats a cure, and that if we don't understand the cause of an ailment, the meds and treatments are "shooting in the dark" to a large extent.
I know each of us is different, and that I am one case, but from reading comments from others on here, it is clear that the possibility of an Afib-gut connection should be front and center in the diagnosing and, in many cases, treatment of Afib.
Fibnum, I can't tell you how amazed (and grateful) I was at your reply. 2 days ago I had a terrible & odd day of indigestion & "trapped gas" (exactly your words!) which wd not go up or down, & I went into afib yesterday. Had been eating quite a lot of watermelon for as week, which I learned is hard to digest/very gaseous; and I've had 3 AF episodes in about 8 days, ridiculous. My EP & cardio stated "NO idea where to refer you for food testing, etc."--this is in a very big city w/ scads of sophisticated tertiary care of all kinds, yet basic, simple approaches seem to escape them. Like you, I keep telling them, "This is digestion & food related." They nod and say "have you thought of an ablation?"
I am seeing a new older, experienced GI dr. Sept. 7 in hopes he'll have more experience from "the old days". I am trying to get food/allergy testing done. I have a long history of ulcerative colitis for which I'm on mesalamine, but IBD symptoms are also heavily food related. Have never had tests done. I've gone weeks to a month without AF, but 8 mths wd be a dream. My GP says "Gas-X and omeprazole"; I think the GasX is helping, omep takes longer.
These symptoms are making me so distraught, I thank you sincerely because your words were calming & gave me some hope. I can start with a low-gas diet & even a gluten-free diet wouldn't hurt. Maybe I'll hit the jackpot w/ the new doc--hope springs eternal! Please keep my search in your prayers, fibnum. Grateful. D.
Dear healingharpist,
Thank you, I hope your investigation into your digestive issues can lead to eliminating most gas buildup and eventually any Afib.
I learned that have celiac disease by being tested by a GI. I immediately sought to avoid gluten and also studied the Fodmat diet guide to try to see what to avoid beyond gluten. It is a bit research and a bit learning by trial and error, unfortunately. I also take a dose or two every evening of Pepto-Bismol before bed and use Gas-X a couple of times a day, if needed. I I often take a 10 mg Pepcid pill before lunch and or dinner. I am suspicious of the safety of Omeprazole. I take an Align probiotic once a day. For me, staying on top of the gas buildup and avoiding sleep apnea at night or while napping in a chair have been the keys to staying Afib free.
Don't forget to use good breaths through the nose and stay well hydrated to help head off the heart unease that can lead to Afib.
There is a good video by Dr. Sanjay Gupta (not the one on cable news) on YouTube discussing digestive issues triggering Afib. I had already worked out my own plan for preventing Afib before I saw it, but it gave me good support and affirmation for what I was doing.
All I can offer is what, to this point, has been successful for me. I hope you will find your answers.
p.s. I gather you are a harpist. I was an orchestral trumpet player and professor for over 40 years, so I am glad to try to help a fellow musician!
Wonderful, a fellow musician! Yes, I'm a professional harpist as a long part-time side career. Thank you again for all of these helpful details. I just came across a functional med. dr., Amy Myers' program for healing autoimmune disease, and it starts with excluding gluten & healing the gut, treating SIBO, etc. Wondered if you had heard of her. I am also one who sleeps either sitting up or very close, mainly to help digestion and prevent acid reflux/indigestion. I also try to stay hydrated but I admire your exercise regimen, as I need to stick to daily walking at least. I work full-time which makes some routines hard to establish. I will also ask the new GI to test me for celiac. Fibnum, you have given me a wealth of detailed and very important tips to use. I will send you a report after trying some of your pointers for awhile! Many thanks and blessings, Diane (PS--Is your "name" in re fibonacci numbers? just curious)
You have found me out!
Yes, I memorize Fibonacci numbers as a mental exercise. After years of pursuing it off and on, I know the first 135. Believe me, I am no savant! I go through them once a day.
I use that body of memorized material for practical purposes sometimes - to take my mind off of the dentist or a recent angiogram (non-Afib related) at which I was wide awake and feeling the scope going up my arm, for example. I also used it as something to go through mentally to distract from the nerves one gets in that last 10 minutes before going out for a solo with a band or orchestra. It really gave me a calm feeling the last time (10 years ago or so) that I played a solo with a concert band. (At 79, I no longer play.)
Too much information, but thanks for being interested in the name!
Al Moore (fibnum)
I will agree with you, these doctors have no clue to the gut connection what so ever. My last visit to the ER (I don’t have many) but I had sudden onset of dizziness and wanted to rule out stroke) the doctor said everything was fine and I was really healthy, he asked how did I keep myself so healthy and my reply to him was I stay away from doctors. he laughed and said I don’t blame you.
My EP had urged me to try Tikosyn, a medication that has to be administered in the hospital because it can be dangerous. 10 months ago, I was in the hospital for something other than Afib, and she sent over a colleague to pressure me to try the med "since I was in the hospital already". I took it and was informed the next day that it had created a worrisome lapse between the firing of the two heart chambers. I had 3 days of intravenous magnesium drip and ended up getting too much of that. I was in 5 days in all.
I have not seen the EP since!
So far, it is amateur doctor 1, trained MD -1.
So sorry, we tend to think they are the experts. But I do rethink that because in reality they are practicing. I hope you are better.
I just want to add that I have had some wonderful doctors, but there is a need to figure out whom to trust.
Hi there
I’m interested in what changes you have made to allow you to be off meds. I am really keen to do the same thankyou
I had surgical ablation (mini maze). I am in NSR now so no rate or rhythm control drugs and had my Left Appendage stapled so no blood thinners. I blogged my journey on here if you look at my posts you’ll get more info
Three years ago, I was 6' tall and 232 pounds. I lost 10 pounds during the covid isolation and then, once I found out last fall that I have celiac disease, I eschewed gluten and ate smaller meals and lost much more. I am now 195 pounds.(and shrunk to 5'11"!) I think that weight loss must have been the key factor in lowering and stabilizing my BP. My cardiologist also decided I was trying to keep my BP too low for 79 years old, so that was another reason to try reducing the meds.
I was on 100 mg of metoprolol, 30 mg of lisinopril and 5 mg of amlodipine. Currently, I take only 12.5 mg of metoprolol twice daily, so it was a huge reduction. I also exercise for an hour each evening. My BP has been ideal since the change about 9 months ago. (and no Afib!) I have clearer thinking, better balance, more energy, and consequently, a more positive outlook since dropping the BP meds.
I have wondered whether the BP meds contributed to my Afib by destabilizing my heart function in some way. I don't know that they did. I hope more research will sort these aspects of Afib treatment out more.
I don't know whether any of this fits your situation, so please don't do any changes without checking with your doctor.
Wishing you well!
Thank you, I don’t take any medication at all post surgery.
Thanks for the explanation and sounds like you’ve done great with the weight loss and reducing your meds. I went on BP meds after my first AFib attack . I’m hoping a healthier lifestyle will help with my heart generally so only time will tell
I hope you can find a combination of diet, meds, sleep, exercise and positivity that relieves you of Afib. I don't want my testimony to discourage you from consulting with your doctors. I can only relate that these things have worked for me.
I want to clarify that not eating large meals, hydrating well and not eating after 7:00 p.m. , followed by exercise an hour or two before bedtime, plus a dose of Pepto-bismol and a gas-X pill before bed seems to be a successful formula for my avoidance of trapped gas. Gas and bloating was my primary trigger.
Best wishes
Alison you’re so brave! It’s lovely to hear your heart has behaved during that jump! It’s great to see you doing so well and enjoying life so much.
That is so good to hear, now you're able to live life to the full again. What a brave thing to do! Would you do it again?
Jean
In a heartbeat!! I am scared of heights so the take off was the bit that made me nervous. Once in the air it was amazing! I did it with an experienced paragliding pilot as a tandem though, could never do it on my own. How are you my love?
I'm glad to hear that you enjoyed the paragliding. I'd have a go at it too, sounds a wonderful experience. I have been up in a hot air balloon, but that was when I was so much younger. Have also ridden in a few small private aeroplanes, one I'm not sure now if it was a two or 4 seater and another about an 8 seater.
I've had a bit of a rough week since having quite a lot of alcohol to drink last Sunday - you may have read my post. That'll teach me not to do that again! My heart rate was fine sitting but as soon as I dared move from one room to another it would shoot up to 146bpm. It made me feel totally drained of energy. So far today I'm feeling so much better.
Jean
Wow, alcohol, the devil!! Glad you are on the mend. Stay well 😘
You sound a daredevil too, love it!!
I think I would have passed out trying that, though not quite as bad as hubby, who gets a nose bleed looking out of the bedroom window 😁. Good on ya!!! Lovely to see you living your best life!!! Enjoy every minute lass. 😊👏 x
😂😂😂 my hubby was cool as a cucumber, I was definitely nervous though! Hoping to hear you have a date, any news?
No date as yet as I had to have eye surgery and elected to have that first, surgeon not entirely happy about that. That was June. They have to wait a minimum of 8 weeks in between any surgery before they'd be able to do the valve.Had to have a laser eye surgery last Friday and dental surgery 2 days ago and apparently, they count as well, so it would be at least October now.
Fortunately, I feel really well and wouldn't know there was an issue 95% of the time and no AF, that I'm aware of, since last DCCV 16 months ago.
I may have to have laser on the other eye, but won't know until end of next week.
I just go with the flow and keep fingers and toes crossed.x
Goodness you are collecting surgeries! Hopefully both your eye and dental have been successful?
I like to keep the NHS busy, although dentist private 😁. One eye good after surgery. Have to wait another week or so to find out if the laser has worked (it's a pressure rather than vision thing) and mouth feels like I've been smacked by Tyson ☹️. Still, I get to eat ice cream so every cloud. 😁.x
Woohoooo! I think that’s great Alison and it looks like a lot of fun. Keep going 💃🏽
52 years young, I had to try something new, hope you are keeping well?
It's so lovely to see you are enjoying the highlights in life mummyluv very brave of you I really don't like hights myself at all. I got my date for the mini-maze with Mr Hunter, which would have been on the 14 th August, I'm gutted I was let down by a company that was taking on my work while having my mini-maze, so now I'm having to wait for a later date 😢.
I don’t know whether to say yay!! To you having your mini maze very soon or No!! To the company letting you down, I hope you don’t have to wait too long for a new date so you can start your journey to recovery 😍
Thank you Mummyluv, it was quite upsetting having to say I can't have it done this month after waiting eagerly for quite a while now. I'm praying it will be November/ December when I'm much less busy 🙏 x
I was going to say “break a leg” but decided that might not be appropriate! Now you have safely landed, I guess it’s OK 👍😂👍
MummyLuv in reply to
Lol, now safely landed back in London Heathrow too 😂😂
Weyhey, that’s fantastic! Well done! Rather you than me though 😊😳😊
Enjoy the rest of your trip xx
It was certainly a highlight! How are you?
Well my AF is irritating but they can’t tell me when I might get a cardio appointment.
We’ve been doing quite a bit of traveling - much less adventurous than you! I’m going to Mont Blanc soon but I only intend looking at it!
So please keep up the news of your adventures - and may you have many more!!!
Wow, just look at you 👏 congratulations 🎉 on being AFib free but then to literally jump off a mountain is really singing the praises freedom (and your consultant! So pleased for you xx
PS when I had my ablation they touched up previous areas and added the back wall & roof of mine - wonder if this is similar to yours when you talk ‘back of the heart?!’ Xx
Yes it is. The back wall you refer to will be the box maze pattern 
Ok thanks I’ll look that up - we’ll it’s worked so far xx
Woow !!!you so brave !!!congratulation on you success !!!well done!
Marvellous news. Good luck to you
What a brave girl!!! Never in a million years could I do that. Well done you. 👍👍
~Wow MummyLuv- well done and what a confidence builder achieving yet another milestone
well done! Forget the AF I’m scared of heights so probably would have a heart attack! 😆
Hi
Hooray!
You look soooo happpppy!
You are one big skite .... so keep praying for us lot.
cheri JOY. 74. (NZ)
You bet Joy. I really do hope everyone manages afib in a way that is best for them, I stick around because surgical ablation is so little known and I want others to add it to their considerations when making their decisions as EPs don’t tell you 🥲
How great! Lovely to hear of your adventures and long may they continue
Blooming fantastic, thank you for posting such an amazing experience. There is hope out there ❤️
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