Hello. I’m in hospital about to have my 3rd and I’m told final electro cardioversion.
If it works, I will at some point ( days/months) have an af episode which will not self convert and the hospital will take no further action other than to reduce my heart rate.
I am too heavy for an ablation. I exercise for 3 hours a day and I work 3 hours per day in a manual job. If I don’t exercise my weight will go up. I’m really quite frightened about what this will mean for me. I’m 53 and I’m not ready to be a couch potato. Also we need the money from my job.
Is there anyone who can share their experience of living a very active life with permanent AF please or is it not possible? I could also do with knowing the limitations. May heart rate will fluctuate around 90-100.
Thanks
Anne
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Rhiannonimity1
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Normal HR is between 60 and 100 so yours is not at a dangerous level although I concede it may be tiring. Life style is more importanat than diets which seldom work I'm afraid long term. All treament for AF is mainly for quality of life so long as rate is well controlled and most people with permanent AF adapt very well to the conditon and live perfectly normal lives.
Hello Buffafly. Thank you for the interest. I converted 1st time on 150 joules ( same as last time actually). This is my 14 th episode over 14 years with the last event 3 months ago and the one before that 2.5 yrs. I only go into af after eating certain foods and I haven’t fully worked out what they are or why it’s happening yet. I’m now at home in sinus rhythm and need to a) get my head around next time being sent home to live with my af ( which has never shown any sign of self conversion) b) try to lose more weight so that an ablation might be possible.
My EP is very understanding about my weight. He knows that I exercise as much as I can and that I eat healthily. But he also knows that my arthritis, spinal disc problems and my fast heart rate when in AF prevent me from being able to lose weight. I struggle to not become even more obese. That, and because I am so symptomatic, is why he is contemplating a 5th ablation for me. But this is all private healthcare. However surely the NHS can make exceptions and look at each person's case individually. How about seeking a second opinion and keep a record of your exercise and what you eat to prove your point.
Thank you Barb. I will keep an exercise and food journal. It is interesting that you have had ablations and are considered obese. At 19st and 5ft 6 I am morbidly obese. I have reduced from 25 stone. I have been told multiple times that I will have to be 13 stone to be eligible for an ablation. I exercise to avoid my weight increasing. My diet is very limited because of the af. I only eat an organic diet - home grown veg plus organic meat and non lactose dairy. I can’t eat non- veg carbs at all, lactose, preservatives or pesticides without going into af. I still struggle to not put on weight .
I am 5ft 9 and 18 stone, so not that much different. You have done wonderfully with the weight loss but it has taken over your life. If they really wont sanction an ablation would they sanction weight loss surgery? You cannot live the rest of your life like this. See your GP and sob your heart out! I do hope you have family or friend support and also that you are on an anti coagulant because that's also your friend
Gosh. That’s a really interesting article. I have been speaking to doctors for years about testing and there is none available to me. I have also spoken to allergy experts and intolerance / allergy testing centres who don’t think they can help because you can’t test for sulphite allergy without giving someone sulphites and the risks are too high if I’m anaphylactic. Interesting the article talks about intolerances being to do with the gut lining. My problems are usually just stomach related ( not the intestines as far as I know). Drugs in hospital will affect my whole system, but food stuffs only cause problems in my upper abdomen/stomach.
Thanks Barb. It’s so good to talk to you. They won’t do weight loss surgery because I cannot have the liquid nutrition afterwards and also because I have no other comorbidities the minimum weight is 18 and a half stone, which I am too near and sometimes go under. I have been under nhs dieticians for years ( as well as private) but as I don’t really eat carbs other than veg they find it difficult to help me. I do eat too much fat. I know that, and fat is the only thing I can regulate as organic meat costs so much I don’t eat much of it. I’m very lucky that my cholesterol and blood sugar are the low side of normal.
It’s not the weight loss that has taken over my life really - it is the foodstuffs I can’t eat because they put me in af. Over the last 14 years this list has grown and grown and being found to be lactose intolerant, on top of it all , last year has reduced my food list to very little. I just can’t eat like everyone else. I have intermittently fasted for 6 years now. 5 hour eating window. I can’t travel normally, I can’t eat at a restaurant. The reaction is immediate, I eat something my stomach reacts to and within 5 minutes I’m in af. The fact that I managed for 2.5 yrs without an episode was a miracle and down to the fact that I kept my diet strict. This last af was caused by cod. Cod is sometimes placed on ice treated by sulphites apparently. Usually I’m ok. This time I wasn’t. I was violently sick and went into af within minutes. The cod might have been off, but my family were ok eating it. I have been frightened of eating for years.
I find your story very heartbreaking because you have put so much energy into getting so little results. The discipline to eat in only a 5 hour window and with limited choice of foods would be mind boggling for me.
So, at first I thought of Keto when you said you ate too much fat. The premise is to eat fat as opposed to carbs is because when the body uses up the carbs, it will start using up the fats. Then, you say you are lactose intolerant, which throws the Keto out because a great deal of the recipes are dairy oriented.
Your last comment "I have been frightened of eating for years" really got to me. Rightly or wrongly, I concluded that it was not the amount that you ate to keep your weight but it was the genetic component of your body.
I don't know if you have already been to a doctor who specializes in allergies. I do know that you have whittled your food list down to very little. It is the answer to the why that I would want to know. I don't know if there is a doctor who specializes in genetics that would be familiar with a rogue gene that is causing your body to react to certain foods -- most of them. Your DNA make-up is an area that you might want to explore, if you can.
You have more than a challenging battle on your hands, well beyond your weight. I would view it as what is the genetic component that is causing weight retention.? What is preventing your body from using up the fuel normally? And, more on topic, if you did have your ablation, would eating these "trigger foods" still cause you to go into AF? Have you been to see an internist ( I think that's the terminology), a specialist who sees the coordination between the different functioning part of the body? What is causing your body to function the way it is? That would be a starting point.
Do keep us informed. I sincerely hope you find answers.
Hi Cuore. Thank you for such a thoughtful reply. I actually can follow a keto easily. Butter does not contain lactose and hard cheese is low enough for me to take a lactofree tablet and be ok.
However it is a bit of a trade off between starchy veg, which I can eat and eating keto. Basically my safe food list is keto plus starchy veg.
I am still feeling as though I can’t cope. I’m at home, in bed, very poorly stomach because of the drugs I was given in hospital. I spoke to a GP yesterday to ask how I would deal with rate control and she said that most people would not be able to work but she had never known anyone in that position under the age of 65.
When the dodgy tum clears, I will start going swimming at the gym every morning to build up my strength. I did go a short walk yesterday and was pleasantly surprised that I didn’t get breathless or struggle at all. I will go out for a walk later today.
I think my biggest current problem is the impending doom of an active person becoming a disabled person overnight. What is the point of trying to grow my gardening business. Is it fair to commit to people with their gardening plans?
Also the only way I’m going to lose the weight they want me to lose is to be radical with my eating. The thought of which is miserable.
On a positive, I am going to a lymphodema clinic on Saturday. A consultant referred me years ago because they said they thought I had a problem. I don’t know how long it will take to find out. But - if I’m found to have several stones worth of fat that can’t be lost through dieting, that might help mitigate my weight loss for ablation.
The trigger foods cause an almost anaphylactic shock, where I can’t breathe, my stomach swells hugely and my heart goes out of rhythm - all within minutes of eating the offending food. Sulphites are the big trigger, but they are in/on so many foods in quantities too small to be put on the label. I don’t know if they would still put me in af after an ablation - but my body is very clearly saying to me that I don’t like chemicals in foods or in medicines. My goodness you realise how chemical our foods actually are. I probably just have to think that this pushed me towards organic gardening, foraging and the horrible way even healthy grains are treated with pesticides.
I am so pleased to hear that you are searching for the cause. Maybe you will get some answers from the lymphodema clinic.
I would suggest you not lose hope because it is the fuel that helps us reach our goals. So, continue growing your business lest you abandon your goal.
I do not understand your GP's position on rate control drugs and not being able to work. There is a plethora of members on this forum that take rate control drugs and work, and even over 65.
You are absolutely right about the chemicals in our foods. My belief is that so many people have allergies today because of the chemicals. But, someone knowledgable in that area could make an informed comment.
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