In responding to someone’s comment on here I’ve asked myself a very interesting question, well I find it interesting anyway 🤣
Has anyone in their MANY interactions with doctors/cardios/Eps ever come across one that has afib themselves or seen of any in their many hours of research and time spent watching YouTube videos.
I’m yet to come across one but would be very interested to know how many of them there are. It would make sense that they would develop it themselves right? Stressful jobs, long hours, lack of sleep, probably not eating too well due to this etc . All the hallmarks for afib I would think?
I’d be interested to know if anyone knows of any and if so how this changes their approach to treating their patients. If there isn’t anybody that does know of any then I’d be interested in peoples opinions as to why this is the case? 🤔
Look forward to hearing from people ✌️
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Elli86
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Yes of course though I can't recall the name. A presenter at one of our early Patient's days was actually an EP with AF and commented that on at least one occasion he went into AF whilst performing an ablation. One gained the opinion that he regarded this as not uncommon and nothing much to worry about which hardened my own resolve not to let AF rule my own life.
I did at a meeting - permanent asymptomatic AF for 30 years. Bob knew him - Prof ? European Cardiology & AFA? Maybe the same guy - perhaps the fact he was asymptomatic skewed his perspective.
Dr Rupy developed AF whilst a medical student & F1 - how he got into Food as Medicine - Doctor’s Kitchen - Lifestyle Doctor - has weekly Podcasts on all sorts of health issues.
I follow Dr John Day & Drs Sinatra (US) more than Mandrola - his book is The AFib Cure but not sure he himself has AF but very knowledgeable and down to earth.
My EP in Devon was wonderful, very understanding and skilled - he fought for me to get the funding for my Pacemaker - you need someone like that on your side!
I have read Dr Rupy Aujla’s books and I’m a regular listener to his Doctors Kitchen podcast. He was a young doctor when he was diagnosed with AF and was waiting for an ablation but found that when he focused on his diet and lifestyle, he managed to put his AF into remission.
It wasn’t his doctors or any procedures which reversed his AF but listening to the advice of his mother. There is also a podcast about the journey on Dr Chatterjee’s podcast.
He developed it soon after qualifying- all those hours and the stress of a young intern in A and E. I'm guessing that's 10-15 years ago. And no, he doesn't get it. Listen to how he talks about lifestyle changes as CDreamer suggests. It's what set me on my path. And, also what set me on a path of interacting differently with medical advisors- we gave a choice. We need to be informed, so that means doing our homework, and that includes joining communities like this one 😉, and then decisions are made together WITH medics. There's a number of excellent medical professional podcasts. Dr Ayan Panja - a career GP - is another. Saving Lives in Slow Motion.
I think we both saw him when he chaired the AFA function at the Houses of Parliament. I was chatting to him and said BobD had sent his regards, he replied “Who”
I jest, he thanked me 😂 I think he’s semi-retired but he was Head Honcho for tickers at St George’s Hospital
You are correct. I had a go at him for the dire lack of services for AF in the South West - at that time no EPs at all in Devon and Cornwall. His reply was that it was known to be a ‘Red Spot’ on the European map, which didn’t please me. Thankfully things improved a few years later.
Is that where your from dreamer? No wonder your so level headed and calm about everything 🤣
I’d love to live down there but there’s not much work from what I hear. Nearly bought a beautiful farmhouse with acres of land down there but couldn’t get the mrs to leave 😩
Ah right ok well I’ve learned something new today 🤣 now I know your a Scouser I will try to keep on your good side 😆
Devon and Cornwall are like a different country. Beautiful down there. Property is cheap but from what I hear but so are the wages and work is hard to come by.
John does yes FJ but it wasn't him I was talking about. (Though I could talk about his assistant Irina.) Much younger man. Not Richard either even though he is a keen cyclist. LOL 😁
Only read snippets of the book, but I do follow him on Medscape and social media. He's a bit of an outlier ep in that he's not as gung ho about ablation as most US ep's, although he does think it has a place. He considers himself a medical conservative and challenges many held beliefs in the field. Interesting fellow. Tweets a lot I agree with a lot of what he says. Disagree with some other things.
I have a friend who is a retired cardiologist who developed AF when he was in his early 50's and the symptoms caused him to accept early retirement from his senior post.
Long hours, stressful job with serious responsibilities and gradually Propafenone ceasing to control his symptoms. He had an ablation a few years back and his EP who performed it started off his career as his registrar.
So much knowledge and experience lost to that hospital but friends like me gained much from his help.
thanks for the input finvola. That’s some story that his ex registrar performed his operation. He clearly trusted him. Very interesting that he went for an ablation as well. How did the op go and how is he now?
Yes, I always thought that was a neat circle too. He had a second touch-up a couple of years after the first ablation and is a very active and useful member of his community - still in contact with his hospital.
You’re very lucky to have a friend like that. Glad it went well. I’d be so intrigued to talk to a doctor who suffers like I do. Feels like you’d finally get a totally honest response.
I was seen by a lovely cardiologist who admitted to me that he knew very little about AF but he told me that he suspected he had had an AF event himself.
He said he was cycling & had to stop & stand under a tree until his heart settled.
Well, I knew someone in Ireland whose cardiologist dropped dead, so that’s pretty scary. My previous cardiologist told me he had ectopics after taking a supplement (didn’t say what) so they’re obviously imperfect and human, like the rest of us.
I’d say that’s pretty much as bad as it gets yes and sorry to hear it. But what did he die of? I think what we ingest plays a vital role in all health including the heart so I’m not surprised about your second comment.
I've known a few nurses with aFib.An old Uni friend actually chose to change their degree choices after requiring a pacemaker and went into cardiology research.
I had an opthalmologist whom suffered a major heart attack and the patients he had , had in the weeks prior to the issue were called back in for retesting. Just as a precaution.
My EP here in Bristol has AFib and he is very upbeat about it , gives me confidence , took me off Bisoprolol and Digoxin . Now on Dilziatim and feel so much better. But every person is different therefore treatments will vary
That’s interesting and what kind of treatment are they on? Have you dealt with any other cardiologists to make a comparison or is this your first so far?
That's interesting. Has he had an ablation ( seeing as he is an EP)?
I knew of one who had a heart issue and agreed ( so he said ) with his own consultant that cycling was the way. He died on the next big ( 60 mile!) event. I always thought his friend meant gentle cycling in Holland might help not a ride that included going up Cheddar Gorge! ( I admit I walked ) to the moors where he died. Sad loss.
It was said at the time “ He died do what he loved “ - at 53 !!
… I’d rather not so I retired from that but still do plenty of other activities - hiking and climbing but I’ll steer clear of K2 or Eiger and keep it low level … I may well die doing what I love , no problem with death, but I want to try to do a lot more of it first !
It was …and only two hours before he’d helped me when I got into difficulties and had cramp in all four limbs through lack of proper/adequate hydration…(that was an experience !) he gave me something from his store of sports electrolytes that I still use to this day. It’s become one of my suite of tools that seems to keep my AF at bay for the most part.
A good question. I’m seeing my EP today but don’t think I’ll ask him right before putting my heart in his hands! in my experience working in multidisciplinary teams the consultants tend to keep their lives quite private. Not sure why. I’m very confident that my EP keeps up with all advances and relevant research but I agree it could make a huge difference if some of them were experts of their own experience, just if they spent ten minutes a day on this forum they’d learn so much!
Exactly that and I hope you ask him 🙏 I think it can only make a person more compassionate to their patients and also more determined to find an answer or at least make progress.
Like you say even coming on here and learning what we go through day to day would help but I doubt any of them have the time or the will to do it. Again obviously if they had it themselves I think this would change drastically.
Maybe attending AF forums could be part of their training - or even better a core group of patients could run some workshops for cardiology students. I have a friend who gives training sessions regarding her experience of sepsis and for years our “experts by experience” group run by the charity I worked for was voted the favourite class by medical students.
He didn’t go into any detail, only reduced alcohol intake (I stopped completely) , sensible diet and exercise. He added bisoprolol to the anticoagulant as a precaution. That was 3 years ago and my attacks now are rare (touch wood!) - only 2 this calendar year
Thanks, Alfc. I'd love to get to that point. I already had a "sensible diet" & don't drink alcohol, but I don't exercise (other than dashing around working too many hrs ) Worth a try, next! Diane
My EP at Bristol heart institute has some type of irregular heart rhythm, think AF and he told me he was on Flecanide for 7 years when I was unsure about taking it. Lovely man but hard to get an appointment with him.
I really didn’t want to take it. I was given as pip but avoided taking it, then over the summer my afib got worse and I had no choice but to take it. I do feel more tired than usual and more breathless. Can I ask why you didn’t get on with it?
I felt horrendous and every day got worse. I didn’t realise what was happening and that the drug was responsible until I came on here. Once I stopped I felt ok again. It literally felt like I was dying and that’s no over exaggeration. I didn’t know much about af at the time either so I assumed it was just getting drastically worse very quickly. Thankfully I came on here and soon realised it was the drug 😅
Loads I should think. I daresay Dr Rupy Ajula of The Doctor's Kitchen has already been mentioned. Listen to some of his earlier podcasts where he talks about his AF journey.
The only caveat I would add is that AF in a fit young 20-something may not have the same root causes as someone who develops AF in their 60s or 70s and whose valves etc may not be functioning as efficiently as they were in previous decades.
Coincidentally our GP has afib tachycardia. I only discovered it when he learned I had been taken in for a pacemaker. He said he was booked in for an ablation in the new year. We chatted about him as he said unlike me he didn’t get any bradycardia.
That’s interesting that he’s having an ablation. I would love to speak to one of the doctors/eps/cardios but to be honest I don’t think they’d be able to get me out of their office 🤣
Our gp I would say is about early 40s snd he is only having the ablation because he has tachycardic afib no slow heart rate. Lovely man and easy to talk to
Interesting thought. I look forward to seeing the discussion on this. I see you are less that half my age so sorry that you have had to deal with it while still so young!
Thanks Vonnegut. Yes it’s a pain up the ass I’m not going to lie. But obviously you all know that anyway. Thanks for the message though. It is what it is we just have to crack on don’t we 🤣
I was under Prof.Shilling at Bart’s for years for my Ectopic beats , he used to say he suffered with them also, but told me to run up a flight of stairs to get rid of them 😃 apparently that what helped him, I did , but wouldn’t say it worked for me but found Magnesium helped greatly .. he tried to give me an ablation to help Af and EB but couldn’t bring on either 🤨marvellous , when you want them it doesn’t happen 🫤 that was about 15 years ago now!
Still get Ectopics now again .. thank god I don’t suffer with AF .. but this forum has been of great help to me , finding your not the only one who suffers ..
Dr John Mandrola. He is an EP and avid cyclist. His book is "the Haywire Heart". He has (or had) a website/ blog. I used to read it when first diagnosed.
I think most Cardiologists (not EPs) have far more serious conditions than AF to deal with, so I think it's quite low on their list of priorities. When I was diagnosed, my Cardio told me that this is a condition you are unlikely to die from but will probably die with ! . Same applies to the average GP with the multitude of conditions they are faced with and the flack they face if they misdiagnose - it must be very hard trying to be all things to all people!
I think that’s exactly right. AF is considered low priority in Cardiology departments, and the priority is on more urgent cases. It comes as a shock to some people when they are newly diagnosed.
Yes I agree with that assessment but obviously they will tend to specialise in different areas. No doubt it’s one of the lesser deadly heart conditions you could have for sure. That being said it’s still one hell of a thing to deal with, especially when it starts at a younger age.
As for gps it’s a very difficult job but they certainly get compensated for their time well enough 🤣 also i am of the opinion that they should be held accountable for misdiagnosis. Although it’s a controversial topic we rely on them so much and when they misdiagnose it can be deadly. Everyone makes mistakes of course but it’s a different story when your mistakes can lead to people becoming incredibly ill or worse case scenario dead. It should be a job for only the most capable of people in society and if you’re not cut out for it then you shouldn’t be doing it.
Someone close to our family has been misdiagnosed for years and put on an untold amount of different drugs for what they believed to be different issues. They changed his diagnosis so many times you wouldn’t even believe it. Wasn’t until he was on a holiday in Spain and felt Ill on his latest bunch of antibiotics that he was diagnosed in a Spanish hospital with stage 4 lymphatic cancer. He’s now been given weeks/months to live and is in a terrible state that you wouldn’t wish on your worst enemy.
How the nhs failed to come to the same conclusion is beyond me.
I'm surprised it was not picked up, as the routine blood count shows the presence of unusual blood cells. That was the case with my late husband - he was very remiss about going for annual blood tests(not NHS we are in South Africa)) but had to have a hernia op. After discharge he developed a DVT, which should not have happened, and so had a full blood count where the misshapen cells were seen. He died 6 weeks later from mantel cell lymphoma , but if he had had tests earlier as recommended by his GP, he might well have gone into remission with treatment and still be alive, who knows.
Sorry to hear about your husband. The person I’m talking about was very health conscious. He was continually pushing for more answers and wasn’t happy with the continual change in diagnosis. I have absolutely no idea how it wasn’t picked up. I wasn’t that close to him personally, he was a partner on my gfs side of the family but unfortunately it looks more than likely that he will now die due to a misdiagnosis. Unless the last minute chemotherapy can have a drastic effect.
The best-known EP/cardiologist with atrial fib, I think, might be Dr. John Mandrola of Baptist Health Medical Group in Louisville, Kentucky. He is a cyclist and has a particular interest in AF, especially using lifestyle changes rather than jumping to an ablation too quickly (which is interesting, coming from an EP!). His site is drjohnm.org. He also has an excellent Substack called "Stop And Think." (I live near Louisville & tried to get in to see him but my case is "too ordinary".) He's often on the road to conferences in Europe, Great Britain, etc., so he can then give readers good critical thinking (in plain English) about how to understand the results of cardio-related studies. He's a balanced thinker and, I think, offers sensible advice and intelligent reflection upon the journey of AF. Cheers to all, Diane S.
Well, I have paroxysmal AF, my heart rate rather quickly drops to 80-90 during episodes, and I can convert with 150 mg of flec within a few hrs. Since he spends a huge amount of time going to cardiac conferences, then analyzing & writing about the results of research studies, he has cut back seeing patients, and seems he wants to deal with more unusual cases, maybe complicated multi-conditions. I thought I was complicated enough , w/ a LONG history of ulcerative colitis, and a whole-body inflammatory attack 3 yrs ago that seized up my hands & knees. Since inflammation is the newly lauded scapegoat/substrate for AF, I thought I'd be the perfect candidate for Mandrola's practice! Nope. I'm just a case of bland white bread AF...sigh! Still love the guy's Substack and feel he's pretty balanced and sensible on cardio issues. Maybe I'll try again one of these days! All good health, Diane S.
She questioned reaction to Rate rather than Irregularity.
She was very concerned that no doctor or specialist was intervening in my 2nd change of BB Beta Blocker.
Still uncontrolled at 156bpm she suggested that she refer me to a private heart specialist.
I did and I reaped the rewards. He put me on CCB Calcium Channel Blocker Diltiazem. Within 2 hours of starting it my H/R dropped 105bpm.
Because of this 80s Locum I am now controlled.
I keep her as my Doctor although she only works 2 or 3 days per week and has time off.Her ablation (done in Australia) stopped her AF. I can't have one.
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I agree with a lot of what he says. Disagree with some other things. 
) Worth a try, next! Diane
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