Afib leads to heart failure

Posted by katiekateny @katiekateny, Dec 2, 2023

I have written here before. My story is that I have had Afib for the last 8 years…but not diagnosed till October of this year.

I have been baffled why so many doctors through the years simply dismissed my complaints about the episodes. If Afib is such a serious condition why was I never taken seriously? I came to believe I was just a hypochondriac since so many doctors just patted me on the head and sent me home.

So..finally a doctor actually saw it and caught it on ekg. I am waiting for ablation. The EP I was referred to also seemed to not believe I have Afib. My episodes are about 10 days apart….so if a EP insists on seeing it on his own ekg, he could wait a very long time. I have been twice put on a heart monitor this last month….without catching it. Why is it important that he see it with his own eyes? Does he not believe my Doc? My EP cancelled ablation procedure for the second time and I am now waiting to hear about the next date. (Probably in February). I have read that the sooner it is done the better the outcome. I think he decided to take December off. If Afib is so serious…why do the docs not take it seriously?

Well, my GP decided to look further about my complaints about how all these drugs are making me so exhausted and short winded. My swollen ankles were the final clue. Blood work came back…elevated markers show I have heart failure.

Knowing that Afib is progressive and having been ignored for 8 years I believe has led to this. I am type C heart failure scale. I have symptoms, and leg swelling. I have had swollen ankles for the last year. I thought it was because of the surgery done on my knees. I mentioned to the Doc that it doesn’t seem to get any better.

So, I guess this is just me getting angry and venting.
I know Afib cannot be cured and it is progressive…but I believed that was many years in the future. CHF has a 50% mortality in 5 years. So, I guess I have a “sell by” date now.

I have asked about cardio rehab to slow this down. Not getting any response.

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

@lkl

Which watch do you use that gives you alerts. My apple 8 doesn’t seem to.

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Hi, I don't know which watch I have, except an 8. My watch doesn't give EKGs, just A/Fib Alerts. I bought the watch online via Walmart and wasn't unaware it had an A/Fib feature until I started receiving the warnings. I will attempt to find the exact model, but I must search. Here it is:
Apple Watch SE (1st Gen) GPS + Cellular, 44mm Silver Aluminum Case with Abyss Blue/Moss Green Sport Loop
Size: 44mm
Actual Color: Silver
Qty 1
$210.00 from savings
$149.00
Was $359.00
$359.00
Item reviewed

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@katiekateny

Thank you. I wonder, since I have some serious symptoms and confirmation of heart damage

I read on the Cleveland Clinic website that the average is 50% still alive 5 years after diagnosis….but, cannot figure what may be part of that.

I have found a web site that calculates expect life expectancy for HF….but, it is clearly asking about 20 questions that a purely highly technical in nature…..stuff only my doc will know. For example..it wants to know the percent EF. I don’t know if it was ever measured or what the value would mean. That sort of question. I am going to ask my doc to run the numbers for me.

Since I am already dealing with panting whenever I go for a walk…however short, I am at the stage C level already. According to Cleveland clinic the progression to final stage can come very sudden and progress fast. Hopefully, I am not one of those…but, still need to prepare myself for it.

Yes…Afib is not listed as cause of death, but it is the cause of death…because Afib cannot be cured only slowed down….and sooner or later (if you live long enough) you will have HF from the damage to the heart as a result. I cannot stop wondering if those 8 years of no treatment has brought me here.

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katiekateny and windyshores,
I am a heart failure patient at Mayo Jacksonville. I was diagnosed in 2000 with HF. I have cardiomyopathy caused heart failure. It is now 2023 and I am 76 years old. I do sprint triathlons (about 10 a year). I do them per cardiologist directions at moderate level but have finished all (about 50). I was a competitive tennis player prior to that but the quick arm movements were bothering my ICD/Pacemaker wires. My cardiologist and EP (both Mayo) recommended stop playing tennis and consider sprint triathlon (I was already swimming, biking, jog/walk).

Been doing them since 2017 and other than a year off getting treated for prostrate cancer have been doing and enjoying them. I do them at moderate level and walk/jog during run portion.

My EF moves between 25-30% for two decades now. By the way EF is subjective. My heart failure doctor (Mayo) tells me not to even look at my EF but base my HF on how I feel. I do have AF (occasionally that rectifies itself). My EP said the serious thing about AF that EPs worry about is strokes because of blood clotting. Thus a lot of blood clotting medications out there.

I am not sure why you were told AF was not treatable. Ablation and medication can really help reduce it symptoms. I have hundreds of thousands of PVCs over the last 2 decades. One ablation done in my RV stop PVCs immediately. I still have PVCs in LV but I take a low dose medication to reduce them.

I am on Entresto and Carvediol for my HF. I do not have any exercise restrictions other that told be stay a moderate level of exercise. However my heart failure doctor (Mayo) does a pulmonary exercise stress test on me every 2 years. So life expectancy and what you can do and not do after a HF diagnosis is a personal thing for each of us. And a statistics are just a number not a predictor for you or your love one specifically.

EF means ejection fraction. It is the amount of blood that moves out of the heart when it pumps. The normal rages in around 60-70%. Mine is 25%-30%. It steadily went down from 2000. However when I was put on Entresto, carvedidol, and got a ICD/Pacemaker it has held steadily for 10 years now around the 25-30%. For your information, a EF is gotten from a echo-cardiogram. If you have not had one you should.

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@jc76

katiekateny and windyshores,
I am a heart failure patient at Mayo Jacksonville. I was diagnosed in 2000 with HF. I have cardiomyopathy caused heart failure. It is now 2023 and I am 76 years old. I do sprint triathlons (about 10 a year). I do them per cardiologist directions at moderate level but have finished all (about 50). I was a competitive tennis player prior to that but the quick arm movements were bothering my ICD/Pacemaker wires. My cardiologist and EP (both Mayo) recommended stop playing tennis and consider sprint triathlon (I was already swimming, biking, jog/walk).

Been doing them since 2017 and other than a year off getting treated for prostrate cancer have been doing and enjoying them. I do them at moderate level and walk/jog during run portion.

My EF moves between 25-30% for two decades now. By the way EF is subjective. My heart failure doctor (Mayo) tells me not to even look at my EF but base my HF on how I feel. I do have AF (occasionally that rectifies itself). My EP said the serious thing about AF that EPs worry about is strokes because of blood clotting. Thus a lot of blood clotting medications out there.

I am not sure why you were told AF was not treatable. Ablation and medication can really help reduce it symptoms. I have hundreds of thousands of PVCs over the last 2 decades. One ablation done in my RV stop PVCs immediately. I still have PVCs in LV but I take a low dose medication to reduce them.

I am on Entresto and Carvediol for my HF. I do not have any exercise restrictions other that told be stay a moderate level of exercise. However my heart failure doctor (Mayo) does a pulmonary exercise stress test on me every 2 years. So life expectancy and what you can do and not do after a HF diagnosis is a personal thing for each of us. And a statistics are just a number not a predictor for you or your love one specifically.

EF means ejection fraction. It is the amount of blood that moves out of the heart when it pumps. The normal rages in around 60-70%. Mine is 25%-30%. It steadily went down from 2000. However when I was put on Entresto, carvedidol, and got a ICD/Pacemaker it has held steadily for 10 years now around the 25-30%. For your information, a EF is gotten from a echo-cardiogram. If you have not had one you should.

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Did NOT say Afib wasn’t treatable. I say it is progressive and cannot be CURED.

Ablation could buy a lot of years. I read that for most people 2 or 3 ablations are needed to achieve that result. But, the average for those people is 8 years before the Afib starts up again.

So, I thought I would have at least 8-10 more years before I would have any worry about Afib coming back and progressing to HF.

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Your comments unfortunately parallel my experience. I had never heard of afib but had varying degrees of high blood pressure issues for years. Had taken the standard Rx for that accordingly. Over time I was a patient at Mayo for various reasons . Some basic cardio tests were done then as you may expect. I live about 1000 miles away so not a routine patient. After severally years but not having been at Mayo then, I began to notice what seemed like periodic irregular heart beats but nothing overtly "dramatic". (There's more related indignity situations, as I term them, in my quest to find the right answers. I won't include them here per the length of writing those descriptions that would require). However, the net of this is that there are two well regarded. multi-location cardio clinics and others where I live .. it is a highly populated area. I went to each of the top two clinic over time .. neither ever did the basic tests that Mayo did routinely so I knew what the tests were. I finally decided to go to well respected university based medical facility located about 200 miles from where I live. In three elapsed days and with the four basic tests I had had at Mayo, I was told I had afib and had already had a heart attack ... they cannot pinpoint the timing. I was stunned. My point being here .. not to give advice but definitely to extend compassion and wondering how often some of these situations do occur for others as well.

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@treeman1942

Good morning, 1886,

I forgot to mention that I have no side effects from the Metoprolol other than the significantly increased energy level. Still, I wouldn't say I like the thought of staying on a thinning drug and the Metoprolol. I will probably request an ablation procedure in the future, but I will go to the Mayo Clinic for that. I have complete confidence in the Mayo Clinic but didn't have the cardioversion done there because I worried about my senior dog surviving a kennel. She has Separation Anxiety, is blind, and is deaf.

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Thanks for the reply. I will be contacting my Dr tomorrow. I have to agree with you as to the Mayo Clinicand that is what I may resort to as I have a lot of trust in them. Twenty two years ago I was diagnosed with melinoma in my right eye and it had to be removed quickly. I got a second opinion from Mayo and a lot of testing and I still have my eye to this day.

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@stell

Is anyone taking multaq for AFib? My AFib is occasional. I wonder about the drug side effects? Thanks

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Someone prescribed this for me, but no other doctors had ever heard of it. It has a black-box warning on the website, so I would be cautious.

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@1886

Thanks for the reply. I will be contacting my Dr tomorrow. I have to agree with you as to the Mayo Clinicand that is what I may resort to as I have a lot of trust in them. Twenty two years ago I was diagnosed with melinoma in my right eye and it had to be removed quickly. I got a second opinion from Mayo and a lot of testing and I still have my eye to this day.

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Good morning,

Yes, the Mayo Clinic's are the best. I went to the Rochester Mayo Clinic after my Heart attack 22 years ago and was impressed. In reality, I'll be making another appointment there soon. Good for you on your wise choice and saving that eye!

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@katiekateny

Thank you. I wonder, since I have some serious symptoms and confirmation of heart damage

I read on the Cleveland Clinic website that the average is 50% still alive 5 years after diagnosis….but, cannot figure what may be part of that.

I have found a web site that calculates expect life expectancy for HF….but, it is clearly asking about 20 questions that a purely highly technical in nature…..stuff only my doc will know. For example..it wants to know the percent EF. I don’t know if it was ever measured or what the value would mean. That sort of question. I am going to ask my doc to run the numbers for me.

Since I am already dealing with panting whenever I go for a walk…however short, I am at the stage C level already. According to Cleveland clinic the progression to final stage can come very sudden and progress fast. Hopefully, I am not one of those…but, still need to prepare myself for it.

Yes…Afib is not listed as cause of death, but it is the cause of death…because Afib cannot be cured only slowed down….and sooner or later (if you live long enough) you will have HF from the damage to the heart as a result. I cannot stop wondering if those 8 years of no treatment has brought me here.

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@katiekateny my mother panted whenever she moved, for years and years. You might want to go to afibbers.org, a site that has a lot of AFib stories. I believe it is possible to slow afib down. AS @gloaming said, the main risk is stroke.

I use a Kardia device, a small credit card sized device linked to my phone. You put two fingers on each side and it does an EKG and stores it.

Have you have an echocardiogram? Your ejection fraction should be on there. Those blood tests for CHF fluctuate a lot so don't take one test as an absolute.

Have you had Troponin tests when in the ER? They measure heart damage. I don't have any heart damage as yet from my infrequent Afib since 2015.

I wonder if other factors influence that mortality rate of 50% in 5 years. Maybe study participants were very elderly and died of other things. CHF can be seen as a marker for age in some instances (not viral cardiomyopathy of course). Do they have a control group?

ps diuretics, compression stockings and keeping legs above heart level can all help with the swelling, which also fluctuates

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I am not a cardiologist but want to point out that a diagnosis of heart failure is NOT a death sentence.

For those who have been diagnosed with it should know their EF and which symptoms are related to HF. EF is determined during a ecocardiogram. This is a subjective test though and heart failure doctors will tell you a lot of determination on what level of failure you are at is based on how you feel, what you are able to do, and symptoms you have (swelling in limbs, lung congestion, fatigue, breathlessness, hospitalizations, etc.).

Again I am not a cardiologist and NO expert on this but the term heart failure Is NOT that the heart has failed. It means it's functioning has been reduced. Many things can cause that. Heart attacks, cardiomyopathy, viruses, electrical problems, high blood pressure, etc. I am being treated at Mayo Clinic Jacksonville by the division head of the heart failure/transplant division. I have been his patient since 2006. Yes I am in good hands!

I want to be completely clear a diagnosis of heart failure is serious. My personal opinion though is the name should be changed to something like reduced heart function. Then the term heart failure used when you are hospitalized and your heart has and is failing.

I saw one poster said her mother lived a long life with it and died at age 93. I have had diagnosis of HF for 23 years and I am 76 years old who does Sprint Triathlons. My HF nurse told me they have individuals doing construction work with an EF of 10%. I have a low EF but told my body had compensated for the reduce blood flow very well and thus very little symptoms.

There are different levels of heart failure. I was told it was from 1-4. I am listed a 1-2 level. I take medications for my heart failure (entresto and carvedidol spell?) but have never been hospitalized for heart failure. I have an ICD/Pacemaker as electrical problems with heart is how mine started with cardiomyopathy.

There are excellent medications and treatments for heart failure. I was diagnosed in 2000 with heart failure. It is now 2023. One of the worst things is not treating high blood pressure. It can cause undue stress on heart and cause it to get larger. As it gets larger it starts losing its contraction ability (EF). Many treatments have been shown to improve EF and/or maintain it from getting worse.

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@jc76

I am not a cardiologist but want to point out that a diagnosis of heart failure is NOT a death sentence.

For those who have been diagnosed with it should know their EF and which symptoms are related to HF. EF is determined during a ecocardiogram. This is a subjective test though and heart failure doctors will tell you a lot of determination on what level of failure you are at is based on how you feel, what you are able to do, and symptoms you have (swelling in limbs, lung congestion, fatigue, breathlessness, hospitalizations, etc.).

Again I am not a cardiologist and NO expert on this but the term heart failure Is NOT that the heart has failed. It means it's functioning has been reduced. Many things can cause that. Heart attacks, cardiomyopathy, viruses, electrical problems, high blood pressure, etc. I am being treated at Mayo Clinic Jacksonville by the division head of the heart failure/transplant division. I have been his patient since 2006. Yes I am in good hands!

I want to be completely clear a diagnosis of heart failure is serious. My personal opinion though is the name should be changed to something like reduced heart function. Then the term heart failure used when you are hospitalized and your heart has and is failing.

I saw one poster said her mother lived a long life with it and died at age 93. I have had diagnosis of HF for 23 years and I am 76 years old who does Sprint Triathlons. My HF nurse told me they have individuals doing construction work with an EF of 10%. I have a low EF but told my body had compensated for the reduce blood flow very well and thus very little symptoms.

There are different levels of heart failure. I was told it was from 1-4. I am listed a 1-2 level. I take medications for my heart failure (entresto and carvedidol spell?) but have never been hospitalized for heart failure. I have an ICD/Pacemaker as electrical problems with heart is how mine started with cardiomyopathy.

There are excellent medications and treatments for heart failure. I was diagnosed in 2000 with heart failure. It is now 2023. One of the worst things is not treating high blood pressure. It can cause undue stress on heart and cause it to get larger. As it gets larger it starts losing its contraction ability (EF). Many treatments have been shown to improve EF and/or maintain it from getting worse.

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Thank you for your helpful, insightful comments on the A/Fib issue. You have succeeded in putting some of us at ease. You are a gentleman!

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