Closet aFibbers?

An interesting situation and a straw poll for my fellow aFibbers:

As a matter of necessity (food, shelter) I continue to work at 61 and although my mornings are somewhat dicey at times, I'm pretty much okay on the job.

Here's the question. Does one mention or acknowledge that they have aFib? Over the past few weeks I have been speaking with family and friends and aFib has come up in conversation. Do I keep my lips zipped on the topic or do I share my personal situation and prognosis to ease their nerves?

It seems to me that aFib=disability (except when it comes to insurance and government pension) and affects business.

I would be interested in the thoughts of other aFibbers on this. I hesitate to mention my aFib to anyone but close family or friends and it is primarily for this reason.

Murray L

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Tikosyn uptake Dec 2011 500ug b.i.d. NSR since!
Herein lies opinion, not professional advice, which all are well advised to seek.

Hi Murray,
For me, for some reason, I'm somewhat ashamed about this Afib condition to talk to anyone about it if I don't have to. I also have a pacemaker implanted and I'm 48 years old. I'm still struggling emotionally to accept the fact that I have a heart problem. So, I just kept it to myself and don't talk about it. There were a couple occasions the subject came up, but no one understand what the heck I'm talking about. Like you said, for some reason, I feel that this Afib condition = disability and I don't really want the people I know think that of me.

Duke

My observation over many years and in many professional and casual (social) situations is that most people don't really understand what Afib or arrhytymia actually is... so if you just say.... " I have an irregular heart beat".. many seem to 'get' that and then aren't thinking you have a major disability. Sometimes people want to know more and I explain briefly what happens and how it makes me feel..... but most aren't really wanting to know much more.

I see no need to be embarassed by having this. We actually are among the very few that have this warning... as we say.. the Canary in the Coal Mine... that something is amiss and we know that typically it is directly related to imbalances minerals/electrolytes that affect the electrical conduction mechanisms because we aren't producing enough voltage to keep the heart beat strong and steady. This puts us at a distinct advantage of being able to do something preventive before a nutritional deficiency or sensitivity to toxic overload impacts the heart or any other organ function much more severely.

Jackie

I'm very open, but I don't feel disabled either.

Good points Jackie and George,

Murray, I think you might be surprised how many people will engage you about it once they know you understand a good deal about AFIB and have experience with it as well. At least that has been my experience with non-afibbers. So many people either have a family member or at least know some one with AFIB and I don't think people look at it as that disabling in any event.

Yet, as George implied as well, that probably depends on not feeling 'disabled' about it as well I suppose. If one feels too shy about speaking about it to others for fear of being viewed a certain way, then there is probably no need to put it out there and just leave it be. However, I think you'd be surprised how most people will respond when you are able to engage them in a relaxed and easy going manner about it all. It will likely set them at ease as well and it gives a chance to educate many more people about a topic so many will come to know first or second hand either in themselves or in a loved one at some point.

I'm not sure what business you are in and how people knowing you had AFIB at times might make them look or feel about you, but again you might be surprised.

On the other hand Murray, don't feel compelled to speak about it if doing so doesn't come easily to you to those not in the know ... to each his own for sure!

Shannon

George - good point about the disabled factor. I've never felt disabled or maimed and I certainly had every reason to adopt that attitude but there is no question that developing Afib increased my 'awareness factor' on a lot of health aspects exponentially.... especially when it comes to health problems brought on by nutritional deficiencies and imbalances such as Afib and the magnesium/potassium story.

Jackie

I am surprised with all the TV commercials that people still have no idea what Afib is, never heard of it.

I would never go as far as to say I dont feel disabled by this. ?? I mean I was an athelete. With Afib can you take off running a mile or so and suffer no consequence? I have forgotten what it feels like to run and actually have frequent dreams I am running.
Can you climb all the steps in a light house at a normal pace while on vacation? I cant not without suffering consequences.
Can you shovel snow in frigid cold and not be affected in any way?

To say this is not disabling to a point is denying the facts (I think).
I work as an engineer and have a desk job but often wonder what if I had a manual labor job outside.

there is no way I could do it. breathlessness, palpitations, Afib, dizziness

I have young guys at work all the time mention or say "Tim has a bad heart" or "hows your ticker holding up"
They dont understand. to most Afib is as bad as having blockage or other heart stuff

My EP says this will never qualify as disability but I think there is an overall effort to downplay Afib.....it is becoming epidemic and docs are scrambling to fig out what to do with it........... CONSPIRACY!! lol

I am partially disabled and so is everyone else with it

That's an interesting conundrum. I don't know if what I had was an indication of AF or not. I haven't told anyone, not even my wife and I don't plan to until me and my doctor have it figured out. It may still be nothing. I don't want to stress myself out and not anybody else either. If it does come to a point where my doctor says I do have it and that I need to start taking drugs, I think that will be the time to explain. I feel great in general. Just yesterday, some younger tennis player payed me a compliment for making things look easy and never injured for long. Then I explained to him that I do hurt (osteoarthritis right knee, tendinitis right wrist) and that I just don't think about it. After hearing that, he immediately challenged me to a match. LOL (ps I still beat him)

While I do not go out of my way to disclose afib I am not opposed to speaking about it when I deem it appropriate. Like George I do not think of it as a disability. When I do discuss it I say that I have - occassional episodes of irregular heartbeat so that the person I am speaking to knows I am not always burdened by it.

When Senator Bill Bradley was running for President and had to explain his afib he described it as "an occassional annoyance, that is not life threatening."

"I am partially disabled and so is everyone else with it "

I would say that really depends on the individual. Like anything there is a huge range.

I have an 87 year old afibber friend. He got afib from an operation to repair an aneurism. Later he had an ablation. He also has a pacemaker that records time in afib. He told me recently they queried the machine and he's in afib 95% of the time. However, his heart rate is fine. I felt his pulse and it felt pretty even, not "afibby." He said he feels great and not limited at all one what he wants to do.

I have another friend who thinks his episodes were triggered by apena. He is very active and doesn't feel limited either. Now that his apnea is under control, his episodes are very rare.

For me, there really isn't anything I can't do. However I know that endurance training is what brought me here and that continuing it would be foolish. All day, max heart rate activities are a potential trigger for me, so I mostly avoid them. When I do participate in them, I know I'm at risk for a delayed (2-3 day delay) vagal episode. I compensate by pushing my mag intake way over the top. This usually, but not always works to avoid the episode. Complete avoidance is a better plan, but sometimes my small, male frontal lobe gets the best of me. I no longer compete in high altitude, long distance races. That being said, I routinely alpine ski the steeps hard with a 27 year old ski patroller for 7 1/2 hours without stopping to rest, talk, eat, drink or do anything, except for the time I'm on a chairlift. I lead rock climb, hike, raft, kayak, backpack, mountaineer, bike ride, strength train, sprint intervals & etc.

I'm fortunate in that the supplement program I've worked out (mag to bowel tolerance, potassium & taurine, limiting calcium intake) keeps me in NSR almost all the time. Currently 11 months of NSR and counting.

For others where activity is a trigger, I can certainly understand why you'd feel limited. Especially those whose afib is high heart rate and highly symptomatic.

Depending upon a) how you feel and b) how others might react and c) the consequences of disclosure, I can see why some would be very private about this and others not.

George

I'll chime in on this one. My vagal afib, in which 98% of my occurences are after I go to bed, is not disabling physically for me. I am very active in the garden, on the dance floor, and in other random activities (basketball, performing music, etc.) as they do not bring on afib for me either in the moment or in the aftermath. I would say though that afib could be considered a partial emotional/psychological disability for me (although that is becoming less significant over time), as I am, I think, on the very sensitive side in terms of how I feel my afib. It is a disturbing experience for me.
The AMA guides, by the way, does list afib and other arrythmias as a significant impairment depending upon their effect on the person.
And, I do tell people about my afib when relevant, though I understand the reference to feeling ashamed. There is an old part of me that wants to believe that I'm defective, and the fact that this involves my heart makes that belief worse. I imagine that is relatively common for people with heart related problems, and I've had to work with those old wounds as part of this experience. That has actually been one of the valuable side effects of this affliction, and part of the reason I'm not an advocate of an early ablation (I haven't had one yet and my episodes have recently been trending downward both in frequency and length). Ralph

Will share my opinion as well…..67 years old and work in a quite stressful profession. I have never viewed arrhythmia as a disability…..rather an obstacle to be overcome. It has been no different for me than any other physical ailment……have always been very physically active (played collegiate athletics) and have suffered from arthritis. I battled arthritic knees for many, many years and absolutely did not want to have a knee replacement. But when the arthritis became so chronic and restrictive that I had to stop all physical activities……..the problem had to be resolved. As a result have had bilateral knee replacements and recently a hip replacement…..now I can continue my exercise regime and any physical activity. My encounter with arrhythmia has been the same logic……resolve and get on with my life. That was a significant part of my decision-making process when I opted to have an ablation……arrhythmia was having a detrimental impact on my life and had to corrected (was originally very adamant against the procedure but hated being tethered to the anti-arrhythmic medication).

While I do not advertise that I have arrhythmia not ashamed to discuss if beneficial to the situation….same with my joint replacements (also a cancer survivor).

Steve
Spring, Tx.

Well said Ralph

I am 52 and 100% open at work about my afib although I work on Wall Street. People within my bank have been extremely understanding and I have even played YouTube videos showing live ablations. When it got to the point where I missed 10 days at work in a year, I went and did a 4th ablation, which was 4 days ago. As I type, I am commuting back to work for the first time after flying back from Austin. People at work have called me at the hospital and been very supportive. I guess I'm lucky I work for a great bank, but in any case, transparency is my motto in life. I hope your workplace understands.

Just remember a funny story from 2 weekends ago. My father in law, 92 now, never complained about his AF. I don't think he understood it beyond following the drug regiment that his VA doc put him on starting years ago. We only found out about it when my sister in law mentioned it in passing when explaining what the doctor said in an appointment long past when he had chest pains Anyway, he complained 2 weekends ago how lousy a job the workers had done oiling his driveway so he way redoing it that weekend. Man, he has a big driveway. My wife and I were chuckling.

I found it's better not to talk about it. The few times I told someone, they usually said a parent suffered from it, so that just made me feel old (and they were around my age).

I did once get into a conversation at my new job where a couple of guys were talking about their afib (and one was definitely younger than me). One said he'd had an ablation 10 years ago by Hugh Calkins and has been afib free since then. So I did enter the conversation and told them about mine.

But in most instances I think it's best to stay quiet. I think in people's minds it is a disease of the elderly.

I've always been open about it and even described the procedure to many with catheters threaded thru my groin and jugular mapping and burning in my heart. My whole building heard I had a stroke 9 months before my Natale ablation, I couldn't believe how word spread. But being taken out on a stretcher was something you couldn't hide even though it was after 5:00pm.......guess I'm a popular guy!

Always proud to say that I had one of The Best in the World ablate me, like a badge of honor!

McHale