Not Enough Support: I realize that... - Atrial Fibrillati...

Atrial Fibrillation Support

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Not Enough Support

Kharrell62 profile image
29 Replies

I realize that people may think that our posts are insignificant. I think people think heart disease is a casual disease for the ones that don’t have it. I feel like people think it’s just so common so why give us the encouragement we need to carry on. I live in Florence, SC and it is the worst area for heart problems. I feel alone at times because after I finished cardiac rehab in 2012 people thought I was ok. Physically I do good but I will never get over it mentally as most of you won’t. I want to encourage each of you and tell you that you’re not alone. I never take one day for granted as I know you guys don’t either. I’m a 61 yr old female with so much to live for and I’m mad that I have heart disease. I was not predisposed to it in any way either. Let’s lift one another up in prayer daily for good days and for our ❤️ to keep on beating🙏

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Kharrell62 profile image
Kharrell62
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29 Replies
ShaunMB profile image
ShaunMB

Amen to that Kharrell. Unless you have it people just don't understand the mental side to it. How it's there everyday no matter how you look on the outside. Definitely went through the anger. Why me? I just try and remember that God has a plan for all of us and I thank him for another day every day I open my eyes in the morning. You're not alone either Kharrell,any time you need to talk about anything just let me know and I'll listen. You'll be in my thoughts and prayers. God bless, Shaun

Bud5 profile image
Bud5 in reply to ShaunMB

Amen!

In the context of my paroxysmal AF I do not consider I have heart disease, rather a nuisance condition, caused by a weird blend of electrical malfunctions and lifestyle and genetics. At this stage other parts of my heart have not required any attention.

Kharrell62 profile image
Kharrell62 in reply to

Afib is a quivering or irregular heart beat that can lead to blood clots, stroke or heart failure or other heart related issues. No it’s not a disease but it’s a heart related issue that says your heart is not 100%.

in reply to Kharrell62

Sure, but at 73 years there isn't much of me now that is 100%, my range of meds are testament to that. However in most other respects I'm fit and still have a thriving lifestyle. Hope others are as fortunate as me 😊

in reply to

Me either. I itgure I'm running at about 75%.LOL

in reply to Kharrell62

Fortunately our bodies are designed to be able to function reasonably well at less than 100%. Albeit with a little extra care and med help. Good thing, too.

Janith profile image
Janith in reply to

Precisely my sentiments. I too have PAF ... l do not consider that l have heart disease ... my GP said that they have given every test known to man re heart disease ... they all came back negative. However, l am still very careful!

Ianc2 profile image
Ianc2

Hi Carrell62.

Thanks for your post. I am intrigued by your comment regarding living in an area where heart problems are common? Could you explain more? Is it linked to high rates of obesity, , high temperatures, Lack of physical activity, high consumption of alcohol?

Do any of these affect you ? May I suggest you have a look at carneuny's posts - he has dug deep into the mysteries of lumpy hearts and has some suggestions you might find helpful in defying this nonsensical condition.

Ian

Kharrell62 profile image
Kharrell62 in reply to Ianc2

The South has always been considered the heart capital because a lot of people are obese, eat poorly, and drink. I don’t and never have but genetics are also a part of heart disease. Where are you from? I am trying not to take offense to your comment because quite frankly sounds like you may be in denial about your heart pblms.

Ianc2 profile image
Ianc2 in reply to Kharrell62

No I am not in denial, I have had a whole bunch of meds, including amiodarone, cardioversions, open heart surgery for valve repairs, ablation for flutter. I take regular exercise and I am within my BMI (just) and I am very careful with my diet and rarely drink any alcohol.

I am 73 and live in an old coal mining area in the UK where most of the men of my age are dying off from lung diseases and funerals are a regular event among my age group. Despite still having a permanent irregular heartbeat I am delighted to still be alive and get out and about on every opportunity.

I am trying to gather information about this crazy condition out of a sense of curiosity. You mention a genetic element. Perhaps you can expand on that?

wilsond profile image
wilsond in reply to Ianc2

I think there may be something in it..my mum and granma both had AF....

Kharrell62 profile image
Kharrell62 in reply to Ianc2

Just like cancer. He had colon cancer and passed and the drs always ask has anyone in your family had cancer. Why? Because studies show that it’s hereditary 😞

in reply to Ianc2

Hi lanc 2,

Well I believe genetics has a big part to play in this crazy condition., so my contribution to this 'out of curiosity search' is this - my paternal grandfather died from a series of strokes - not one and goodnight Vienna - but a series that each damaged him in different ways. This was in 1964. AF was hardly ever considered in those days. Did he have AF, we'll never know but I feel there is a possibility that he might have. I have AF, Now My grandfather had a brother, and his grandson ( I guess my 2nd cousin) who is a tad older than me and still alive also has AF. My daughter, at the age of 30 - 32 ish, in both her pregnancies developed AF as a result of carrying her babies. Once she stopped breeding - the AF stopped and it has not returned. Whether it returns when she is in her 60's - far in the future, remains to be seen.

But yes, as I said in a post on here, genetics does play a part.

John

Ianc2 profile image
Ianc2 in reply to

Hi John

So I suppose the question is can we get the experts to identify a damaged chromosome or piece of DNA. Might make a good research project for an aspiring heart specialist.

In my mother's family the men had a habit of suddenly dropping dead with heart problems, My fathers family were steelworkers or similar and very few of them lived to a ripe old age and I nearly followed in their footsteps.

in reply to Ianc2

There are plenty of people who die off long before AF gets a chance to take hold. Thus for some lucky enough to live into middle age and beyond and develop AF it can be difficult to point the finger at genetics.

in reply to Kharrell62

Don't forget our good southern food.!!!

ShaunMB profile image
ShaunMB

Hi doodle68 if you do a quick Google search you'll find how beneficial prayer can be to people's health. Couldn't find anything on the porridge though.

Best wishes, Shaun

Bud5 profile image
Bud5 in reply to ShaunMB

Love your reply Shawn and it is true. Does not have to be religious, just giving up to a higher power.

in reply to ShaunMB

I've gotten past the a-fib anger (dx 2011) and am well-managed and doing fine. Also when I start to have a 'pity-party in my head' I try to remind myself someone is always worse off than me. It's not hard to do with 200+ seniors living in my bldg. The ambulance is here frequently and people frequently don't come back from the hospital!

ShaunMB profile image
ShaunMB in reply to

Agree wholeheartedly irina. I to have gotten over the anger end of things and am always reminding myself that things could be a lot worse. As far as the ambulance I imagine that can be hard on a person at times wondering who they're coming for this time. Glad I found this site, look forward to more conversations with you and all the other great people here.

Best wishes, Shaun

li17 profile image
li17

Totally agree! Physically I'm fine. When I'm in NSR, I can drink coffee, eat whatever I want, run at 8 mins/mile pace, chase with the kids, whatever I want. But heck, the inside of me is feeling isolated from everything around me and just feel like in a dream that I can never come out. The worry, the fear, the frustrate, the desperate, are in my mind 24/7. I just can't get back my peace of mind before afib. I haven't felt one day myself since afib.

Dottikate profile image
Dottikate

Hi Kharrell62

You sound very down and depressed, do you not have anyone to talk to about how you feel? I'm lucky in that I have a supportive husband, and two sons who - to be quite frank - fuss too much! I agree that it is impossible to understand the problems with AF if you don't actually have it, so I generally leave it at 'I have a specific amount of energy available everyday and when that runs out, I just need to rest'. In fact it's quite a useful sentence because when, at times, people have expected too much from me, my husband now tells them that.

Maybe it's because I have a fairly non-symptomatic, permanent version of AF and no other related heart problems, but I certainly don't brood or get angry about having it, and could never describe myself as suffering mentally. There doesn't seem much point. In fact, I often forget for days that I have it unless I need to expend a lot of energy. I am trying to get myself as fit as possible, eat healthily, drink alcohol very occasionally, not stress - my trigger for rapid hr. I'm just taking time to smell the roses perhaps more than I ever have before, and give myself permission to slow down. I'm 70, so life allows me to do that. If I were in my 30s or 40s, then that's when I would have been really angry.

It's actually quite interesting reading the comments on here, because I checked where the writers came from. I belong to several AF forums on the internet, and writers from the US frequently suggest the use of prayer or ask for prayers and I know from the time I lived there how many people actively follow some form of religion. Here in the UK, things are quite different, so don't be offended if people do not respond in the same way to you. We all cope in our own way - and porridge is a wonderful thing!

Janith profile image
Janith

I don’t think that afib is heart disease per se. We won’t die during an episode of afib. I have had two episodes of afib in one year. I feel so fit that l am convinced that it won’t reoccur???? My doc says that the odds are excellent that it will recur. Hence, l am always fearful. It is always in the back of my mind. It’s a form of mental torture. Nonetheless, l am happy, thankful. I thank God each and every day for the gifts that he alone has given to me. I totally relate to your fear, but if you watch your diet, take tons of heart healthy supplements, exercise on a daily basis, you will be fine! Pray for me and l will pray for you! And us! We must all pray for one another ... our very exclusive little group. Thank you Dear Lord ❤️.

Hi Kharrell. I agree and think this attitude also spills over to other medical problems. I'm 73 (74 next month) and I have gotten into the habit of just saying "I'm fine." when asked. Whatever you answer someone will say "Oh, I've had that." For ex if you say how tired you are from a-fib., someone will say they know what you mean, they had a long day. No, they DON'T know what you mean. I get annoyed sometimes so L don't share a lot of med info.

in reply to

Hi, Absolutely - AND I really DO know exactly what you mean.

Carol x

It may be that because you're newly diagnosed you are at the beginning of what I call your journey to find out the best treatment for your symptoms. This, I believe, is always a trial-and-error process; involving meds, med changes, learning which sx are serious and which are not, whether to have recommended cardioversions/ablations etc.It's all very scary in the beginning. I read in a post (I believe it was from BobD?) that a-fib won't kill you.you just feel like it will" (I paraphrased). But when you and your docs find what works best for you, the sx settle down and I am here to tell you it's possible to live well and comfortable with a-fib and not think about it 24/7. I hope your trial and error journey goes by quickly and you settle in to being comfortable with this dx. It'snot so bad. Take care. And post whatever you need to get off your chest. I think sometimes families get frustrated with a sick member because they want to help, and don't know what to do. This forum is a good objective place to talk about things families may not handle well. Take care. irina1975

ShaunMB profile image
ShaunMB

Hi doodle I would never make that assumption. Was just pointing out that there is scientific proof that prayer can be beneficial to people's health.

Best wishes, Shaun

ShaunMB profile image
ShaunMB

Hi doodle, like I said in first place I was just pointing out that studies had been done and it was found that prayer can be beneficial to people's health. Nothing more nothing less. My intent was not to offend you or anyone else. Didn't want to start a religious debate with you or anyone else either as I don't think this is the forum for that. As it turns out porridge might be beneficial to people's skin and hair if applied. Hope we can move on from this and still be cordial with each other. I'll say a prayer for you. I'm kidding I'm kidding, just trying to lighten the mood.

Best wishes, Shaun

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