AF more information please: I have permanent... - AF Association

AF Association

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AF more information please

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I have permanent AF. My BP monitor shows this as a flashing heart signal after the reading. I am waiting for further tests but this AF has been ongoing for around 6 months. I am on all the usual meds, blood thinners, BP meds Pulse lowering meds Water retention meds and to be honest I'm just hanging in there. I also have spinal problems, so can't exercise am well overweight (morbidly) and absolutely terrified of the Coronavirus, as I don't think my poor body could take this on top of everything else. If I bend down or stand up quickly, or stay on my feet for more than 5 minutes or lift ANYTHING over 2 lbs in weight I get dizzy. My poor husband is doing almost all household chores for us, we haven't enough information to know what to do before further intervention by the hospital. The tests for cardiology are on hold at the moment, due to Covid (here in Portugal) and if anyone can advise me in any constructive way, I would be grateful. x

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BobD
BobDVolunteer

Whilst I do understand how anxious this must make you it is important to state that any and all treatment for AF is only ever for symptom control, stroke prevention and quality of life so I'm not sure what else you think could be done.

If you are in AF permanently then rate control either with beta blockers or maybe calcium channel blockers such as diltiazem is the only likely treatment to be honest. Since you admit that you are morbidly obese then treatments such as ablation are not likely to be offered unless this can be dealt with. So long as you have addressed all life style changes advised then I do not know what else can be done other than tweaking drug doses etc. You are anticoagulated for stroke control and your rate should be stable so those issues are dealt with. Remember that many people who are in permanent AF live relatvely normal lives.

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Hidden in reply to BobD

Thank you. I didn't expect any miracles, but I just want to know that I at least have a chance.

BobD
BobDVolunteer in reply to Hidden

AF per se is not normally a terminal condition.

Octaviascout
Octaviascout in reply to BobD

I am one of those people in PAF .. thankfully living a relatively normal life on 60mg edoxaban and 360mg verapamil daily.

The most important thing to do is lose weight. You don’t need to exercise to lose weight and a strict weight loss diet is likely to have a rebound effect unfortunately. What you should do is eat a healthy diet but no more than a sedentary person needs each day - Mediterranean food is good and cut out empty calories such as found in fizzy drinks, crisps,alcohol etc. But you have to be strict about eating the same each day so your body and mind get used to what is enough. The meds you are on won’t help with weight loss so it’s very difficult to do (I’ve tried!) but at least you shouldn’t gain weight and you should feel better.

After all that you’re probably going to tell me you already follow a super-healthy diet but the tone of your letter suggested not so forgive me if I’m wrong! Best wishes 💜

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Hidden in reply to Buffafly

No you are absolutely correct. I am a failed dieter, I do keep trying and have been up and down for forty years. I need a prescription for willpower. Thank you for your kind wishes though

sotolol
sotolol in reply to Buffafly

I am the bringer of bad news. The diet needs to be for life not to reach your target weight as you’ll say ... I did it! Just to put it all back on again. My sister was on a diet all her life it didn’t work.

Wishing you well as food is nice ! But.....😩

My husband & I both have AF, although his is permanent/persist. He too is on the same meds as you & is also overweight. He also has longstanding back pain, which is getting worse, due to the fact (we think) that he is unable to exercise due to the pain & breathlessness. It’s seems to a be catch-22 situation & so frustrating for him. He does try to walk & exercise. He really misses his golf. He tries to diet, but the weight remains. 😫

He saw a cardiologist not long ago & it now appears he has some degree of heart failure. The medics don’t seem too concerned & he has not been given any follow-up appointments. I do sympathise with you, probably as you do, feel in limbo. He is 69 and he’s not yet ready to give up.

I do hope you get the help & reassurance you are looking for soon.

Best wishes Ally

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Hidden in reply to heartmatters1

Thank you for your kind interaction. I know I only have myself to blame, no-one force fed me all my life and I have enjoyed the fruits of my cooking labour. Now is my last chance saloon and even then, it's not easy, even when the warning lights are flashing at me.

SOOOOOOOOOOOOOOOOOO I am going to give it another try. I'll think of you and your husband and hope we all can improve our lots. Chin up and carry on. x

heartmatters1
heartmatters1 in reply to Hidden

On the plus side how lovely to live in Portugal- we’ve only been a couple of times & thought it was beautiful & the weather 🌞Enjoy! X

Lots of good advice, only thing I would add is to ensure your electrolytes are good, in particular potassium and magnesium. Also its worth noting that most of us are low in magnesium and magnesium is not easily absorbed in your cells (where its needed for your heart - blood count of magnesium is not the same as cell count). You have to make sure your iron and vitamin D levels are good and your well hydrated. Also if you take PPIs, magnesium will not get easily absorbed, you will need to cut them out or reduce the dose, take magnesium 12 hours after PPIs can also be beneficial.

Right now your heart is irritated and needs plenty of rest and sleep in particular. Do not attempt to lift anything heavy or stand still too long. Do take as many walks (on the flat) as you can.

Hidden
Hidden in reply to Shcldavies

Thank you very helpful

Have you considered weight loss surgery? If all the diets have failed you, then it is something to think about? It’s not the ‘easy option’.... it’s still hard and comes with risks of course but I lost 13 stone with my original Gastric Sleeve in 2012. I had a full Bypass in 2019 because of a hiatus hernia but that’s another story. I have not put the weight back on.

Is there a possibility?

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Hidden in reply to LordGabriel

I did have an appointment arranged for 15/07/2020, don't know if that's still going ahead due to Coronavirus delays. However that appointment is to see a consultant. Next stage is waiting 384 days on a list apparently for surgery if agreed by consultant.

Sooner on the list the better. I was on a list both times. 1st time I waited 6 weeks because it was a cancellation and second time just over a year.

Get on the list!!

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Hidden in reply to LordGabriel

I'll try, if the scheduled visit goes ahead. Thanks

LordGabriel
LordGabriel in reply to Hidden

Well it’s an option isn’t it? Losing weight in significant amounts is hard. I say, go for it. Good Luck ❤️

May I suggest the Kardia Mobile ... I am in PAF and use it regularly to generate a single trace ECG. A more reliable method of confirming AF than the BP devices. I do use a BP device as I’m on Verapamil for rate control. Verapamil is primarily a BP reducing drug and my BP was normal before I started the Verapamil so have to keep an eye on my BP. I’ve never suffered any dizziness or light headedness.

cuore
cuore in reply to Octaviascout

That's interesting about your blood pressure. I, too, took Verapamil along with other AF drugs, and I feel my blood pressure got worse (higher) with all these drugs I have taken.

Octaviascout
Octaviascout in reply to cuore

That’s unusual as Veramapil is primarily a BP reducing drug with the added side effect of slowing the heart rate. My BP now averages at 100/70.

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Thank you for the suggestion

Sorry to here you're struggling at the moment - you must feel in limbo not knowing when you will be seen . AF is such a challenge and all you want is to do normal things without having an awareness that your heart is playing up. From my own experience lifestyle changes are key. Losing weight is never easy. Perhaps WW online might help? 3 plans to choose from,loads of recipes and also a forum where you can connect with like minded folks - signed up at start of year and BMI significantly reduced. There are also links to mindfulness apps which may help to calm things. A gentler version of pilates(sitting on chair etc)may also help? I hope hospital appts start to move in the right direction for you soon.

Hidden
Hidden

Thank you

There is a 'healthy eating ' site on health unlocked - I usually get to it via the 'my hub' button on the top line. They have lots of suggestions available. If you look up 'How many calories to lose weight' on t'internet there are calculators to look at.

The main thrust seems to be about 1500 calories a day for women and 2000 for men, if you wish to lose 1 llb a week . The Mediterranean diet is highly thought of. Personally I have become almost addicted to a very tasty salad at lunch time with lots of green stuff, beetroot, a few small potatoes, spring onions, hummus, and a small serving of walnut, celery, and raisin mayonnaise from a little pot that I get from the supermarket. Say goodbye to bread, cakes and biscuits for a while

If you are badly overweight it may be worth checking your sugar levels as you may find that you are heading into diabetes territory. If you are it will reinforce your need to lose weight and your doctor will be able to advise you of medically supervised diets that go down to about 800 calories a day. It is a very hard diet to follow .

However ,my wife has a friend who is on this diet and the weight is coming off. Every day she has to walk past 'Greggs'. When my wife asked her about it, she said 'I see a window full of syringes and pills'.

I was at a wedding a while ago where I met a friend who was looking remarkably slimmer and healthier. I remarked on his new appearance and he informed me that he had been diagnosed with diabetes type 2. His doctor had a portfolio of photographs of the damage that is caused by this disease and It frightened the life out of him. His wife changed all her menus and he got stuck in. His weight has gone, his diabetes has now gone and his bloods are now normal. He is out and about with a big smile on his face, usually on his way to play golf.

One of the main enabling conditions that helps the coronavirus get stuck in is a BMI of over 30. So you are in for a battle for your life. Your cravings will mercilessly fight against you every step of the way. May courage and determination be with you.

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Helpful, but depressing, thank you all the same. I'm trying to change and living 2/3 of the way up a mountain in Portugal helps. No Greggs here!

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