Hello, and some thoughts ...: Hello, I want... - AF Association

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Hello, and some thoughts ...

dd111 profile image
dd111

Hello, I want to Introduce myself and share some thoughts with you. Sorry but my English is a bit rudimentary. Iam Stefan from Germany. Iam 58 years old, married since 27 Years, have two adult children and have been suffering from episodes of afib for 5 years.

Tonight I had another one of the regular episodes. I then have extremely strong symptoms, feel like a fish out of water. Then I sometimes get scared because I have less air and everything beats wildly in my chest. I feel each of these chaotic beats all the way up my throat. After a few hours, the spook is then over again so far and I hope of course that it is still long so that it goes away again and again. All my life, sport was what I liked to do the most. I lifted weights and did a lot of martial arts. Afib has taken this away from me to a large extent. But I do some, also lifting not so heavy weights.

But what I really want to say is that there are many things in life that we like to do, and afib takes us away from that or makes it more difficult. Or it comes with various limitations and we may sometimes think that life has become less worth living. But we should not forget something specific. There are two things in life without which life would actually really no longer be worth living; two things, if these were missing, everything would really be worth nothing and death would even be a salvation if these things no longer existed. I am talking about love and friendship. Since afib takes away many things from us, but not life itself, and thus not the capacity for friendship and love, we may always be happy. And maybe even more, because although afib does not take away this most important thing, it always reminds us that everything is transient, and this in turn can help us to feel our love for our beloved and our friends even more clearly. Nobody knows whether he will live to see the next day, and it is this that makes us realize with great clarity that there is nothing more precious in the world than this little, single, one day. A single day of life is more precious than a mountain of gold, because on this day you can take your loved ones in your arms and say: I love you, thank you for existing.

These were just some thoughts I wanted to share with you. Never give up. Go on. Thank you for having me here and God bless each and every one of you.

60 Replies

As far as you English is concerned it looks pretty good to me. I think your words and thoughts are inspiring and will help many. AF affects us all in so many different ways and whilst for some it can be just an inconvenience, for many, it can be very challenging so it is important to try and keep things in perspective and your thoughts will help us to do that.......

BobD profile image
BobDVolunteer

I totally agree with your sentiments Stefan. For my part I have had two very close calls with death over the years and have long held the belief that every day is special. Live every day as if it is your last because one day you will be right.

It is important though to understand that not everybody copes well with AF and many are over whelmed by it so for those we need to offer help, understanding and support.

dd111 profile image
dd111 in reply to BobD

I can only agree with you absolutely, also because I myself belong to these people and I didn't want to say "look here, it's all very simple". God forbid I also know that my thoughts probably can't help or encourage many people. I only know that this view and attitude towards life could help me personally again and again. That's why I wanted to share this. It remains an uphill battle for many and every little weapon we have in our arsenal is precious. My little one I just add to the others, and hope that this or that can help one or the other to deal with it better.

Best regards...

Welcome to the forum. I love your post, it sounds so right and your English is amazingly good.

There's no getting away from the fact that AF attacks can be pretty scary. I spent weeks in hospital over the years when they were particularly bad. I'm in my 16th year of having them and have gone from very bad attacks and ones where I thought I would surely die, because of the way my heart was bouncing around in my chest, to now being in constant AF. My life these days is fairly normal and I can walk up and down steep hills again, don't get those scary high rate attacks and my heart rate stays between 60-100.

So my message to you and everyone else is, things can get better and life could one day be normal again. As you say we must value each precious day we have and open our hearts to friends and family.

Jean

dd111 profile image
dd111 in reply to jeanjeannie50

Thank you for your words. It is good to hear that it can also get better, the body may get used to it better and the symptoms can fade more and more into the background again.

I wish you many more mountain climbs, and today you have given me courage 🌸

Tickerprobs profile image
Tickerprobs in reply to dd111

Hey Stefan...What a wonderful post from you. Such a shame that everyone in this mixed up world does not share your philosophy. I live on my own but have close family ties with my children and extended families. It’s difficult sometimes,on your own, during bad episodes but c’est la vie. Good to know YOU have close family support and love. May you fare well and prosper. 👍

dd111 profile image
dd111 in reply to Tickerprobs

And good to know that the connection between your and your children's hearts is strong and unbroken. You did everything right and the most precious thing there is, is yours. May this be a comfort in difficult episodes and a bright joy in the good times. We are still here, so let's keep going!

lallym profile image
lallym in reply to dd111

Lovely post. Have you had an ablation? I had one in 2013 and have been largely free if AF since then.

dd111 profile image
dd111 in reply to lallym

I am so happy for you that the ablation was so successful. The thought of afib leaving you again is wonderful. So far, I have shied away from it because of the risks involved. The idea behind is, that medical technology is advancing rapidly and gentler ablations may soon be available, such as PFA. But i think about it often.Take care 👍

RajaRua profile image
RajaRua in reply to dd111

What is PFA dd111?

dd111 profile image
dd111 in reply to RajaRua

"These characteristics make the method an excellent candidate to avoid thermal collateral damages observed with radiofrequency and cryo-balloon ablation, among which phrenic/vagal nerve injury/palsy, atrio-esophageal fistula, pulmonary vein stenosis and thrombus formation."

frontiersin.org/articles/10...

pubmed.ncbi.nlm.nih.gov/332...

RajaRua profile image
RajaRua in reply to dd111

Thank you DD, I'll read this in the morning when I'm more with it. I had a friend at school called DD! Short for Deirdre. Thank you again for the info. I also feel wary of an Ablation and am doing all I can to take damn good care of myself so as to lessen the episodes of AFib and hopefully avoid Ablation. Sleep well. B

Firstly I wish my German was as good as your English!!

I think your sentiments are really sound and thought provoking. Each day that passes we must cherish. There are some days that are really tough and some years that are really tough. The unexpected is always just round the corner.

I had AF for more that 30 years and I found many times that it affected my quality of life.

After lots of procedures I am much more stable now and value every day that passes. We are only here for a short time in reality so we must make the most of what we are blessed with.

We will all have our good days and bad days but in the words of George Harrison.......................

"All things must pass".

Thank you again for contributing to this forum.

Pete

dd111 profile image
dd111 in reply to pottypete1

Thank you so much for your words Pete, they touched me. So it is ""All things must pass". This can be frightening, but also reassuring, depending on whether we have basic trust in life. In any case, this is exactly the circumstance that makes all things so precious.

Take care!

What a lovely post Stefan. I can't add anything else to what's already been said.

Sterling stuff and welcome to the forum.

Paul ;-)

dd111 profile image
dd111 in reply to Paulbounce

Thanks for the welcome. I read a post of yours somewhere that had the same Inner Alignment. Pure Gold.

Stay strong!

Hello Stefan and welcome to the forum.Thank you for a really lovely post, I cannot add anything more that what has already being stated by my fellow forum members.

Best wishes,

Shirley 🤗

dd111 profile image
dd111 in reply to Ochg

Thank you for the welcome Shirley, and warm greetings from Berlin! ☺️

Great post Stefan, The only thing I would like to say is because AF is an invisible condition I have experienced frustration from friends & family during my years of atrial fibrillation , for example on a bad day I may have to put off an event such as going for a meal or appointments, trips to cinema, a day out! I find this the most difficult challenge and one needs to find patience and understanding from both sides of the fence. But yes you need your family more than ever during these times. Thank you for your post.

dd111 profile image
dd111 in reply to stoneyrosed

Yes, I know that too. When it "hits" me, I am largely switched off and planned things have to wait or I can't participate. Since you never know when it will come back, I am sometimes anxious before very important appointments. But then I think that I have no power over it anyway and try to let go of the thought. As always, what limits us can make what we can even more precious and that's exactly how I try to see it then.

Take care!

I know how you feel. I had Afib on and off for twenty years. It’s just so happens I had an ablation when I was 58. I’m 63 now and I have been pretty much Afib free all this time. I still take some medication just in case. I highly recommend having an ablation done. Just be sure to get an EP with a lot of experience. I would do it again if the need ever arises. Good luck and God Bless.😊

dd111 profile image
dd111 in reply to Deadwoodmike

Thank you, and yes, i think about it 👍

Thank you, Stefan. I have just read this and will take these thoughts with me. You are so right!

Genau Stefan, unser Leben mit AF kann wirklich besser sein. Gott sei Dank!

Welcome to the forum Stefan. I think your English is better than mine and I am English! What a lovely post and completely agree with you. Im into my 17th year of Afib and can remember the early days of hospitals, cardiologists, medication and then sent home to get on with it. It can be a very scary and lonely place. The best bit of advice, which I heard on this group many years ago was that Afib alone won’t kill you. I think a lot of my fears went then. I have since had 2 ablations and it’s touch and go if 2nd one has been successful or not. Will be very disappointing if it hasn’t but I know I can still have hopefully a very good quality of life and all is not lost. As has been said, some don’t cope as well with Afib but with the help of this great group and lovely posts like yours it hopefully helps them to understand and cope better with this mongrel condition and can ask for help anytime.

Take care

Frances x

dd111 profile image
dd111 in reply to Frances123

That's right, Frances, it's not going to kill us. And so that it doesn't rob us of our lives without killing us, we must remain strong and not forget the good that we nevertheless have. Places like this forum - with what I now know are, wonderful members - can help us do that. Thank you.

I wish you so much that the second ablation will exceed all your expectations 🍀

RajaRua profile image
RajaRua in reply to Frances123

Hey Frances, "this mongrel condition"! Indeed it is. Good word for it!

Lovely and so very true. I had Afib for nearly 40 years... progressively to Permanent .... now ablated.5

dd111 profile image
dd111 in reply to Smileyian

Thank you. Tell me, what did the ablation do to your permanent afib?

Herzlich willkommen Stefan. Ich spreche nur ein bisschen Deutsch, aber Ihre Englisch ist ausgezeichnet. Lovely thoughts from you.

dd111 profile image
dd111 in reply to Ducky2003

Dankeschön ☺️

Thank you Stefan, exactly right.

Your English is really good and is massively better than the few words I know in German! Yes, Afib is a truly scary animal and its unpredictability just adds to the fear. I also remind myself that, aside of the Afib, none of us know what is round the corner and we should all embrace the gift of each day we are given. There are people in the world who live in such deprivation, destruction and uncertainty and face far worse things on a daily basis. I am trying very hard not to let Afib define me and rule my life and reminders like yours strengthen my resolve. Thank you.

dd111 profile image
dd111 in reply to Spangle14

Thanks for your comment. I am encouraged to find so many brave people here. Keep going and take care.

He Stefan, thank you so much for those poignant words. It has made me realise how I need to be more positive. Take care xxx

dd111 profile image
dd111 in reply to 19591959

Thank you. Yes, one time we succeed pretty well, and another time less. We can remind each other. Deal? 😉

That was movingly expressed, thank you. Suffering from any long-term illnesses can be deeply unpleasant and reading your post will surely be helpful for many of us here.

Your words brought to my mind a poem I have always found uplifting. It's called "Ulysses" and was written well over a century ago by the English poet Alfred Lord Tennyson. You might enjoy reading it. Here are the final few lines:

"...Come, my friends.

’Tis not too late to seek a newer world.

Push off, and sitting well in order smite

the sounding furrows; for my purpose holds

To sail beyond the sunset, and the baths

Of all the western stars, until I die.

It may be that the gulfs will wash us down;

It may be that we shall touch the Happy Isles,

And see the great Achilles, whom we knew.

Though much is taken, much abides; and though

We are not now that strength which in old days

Moved earth and heaven, that which we are, we are—

One equal temper of heroic hearts,

Made weak by time and fate, but strong in will

To strive, to seek, to find, and not to yield."

Steve

dd111 profile image
dd111 in reply to Ppiman

Steve, this poetic verse struck a nerve in me. It's that love of life, adventure, and alignment with "something" that goes beyond us, but that we can also participate in. Yes, it also has to do with heroism, which ultimately every being needs to go on and on, come what may, not to give up.

I didn't know "Ulysses" by Alfred Lord Tennyson before, but I love it. Thanks for this!

Ppiman profile image
Ppiman in reply to dd111

I’m so glad you liked it and thanks for writing such a lovely reply. I came across the poem many years ago and remember my late mother really enjoying it, too. She suffered so badly with arthritis and she said that it gave her courage. When I read it, I think of her.

Steve

dd111 profile image
dd111 in reply to Ppiman

Yes, I actually like it a lot. With all the sadness that is also always on it to remember our deceased loved ones, it is still a beautiful thought that the verses that once gave comfort to your mother, now helps you. I am sure that one day you will meet again in heaven.

Best regards from Berlin

Ppiman profile image
Ppiman in reply to dd111

What kindness you've shown. Thank you!

Steve

dd111 profile image
dd111 in reply to Ppiman

Thank you Steve. In the end, we are all in the same boat and have to master life. Sometimes everything goes smoothly and easily, but often the sea is rough. I think the best thing we can do is mutual kindness. It makes nothing worse but everything better.

I wish you a beautiful day and God's blessings ☺️

dd111 profile image
dd111 in reply to Ppiman

And also, you gifted me with the sharing of the verses. So I would like to share a poem with you as well. It is one of my favorite, by Rainer Maria Rilke. Somehow it comforts me when I read it and it makes me look positively and confidently into what is ultimately also an uncertain future. Maybe you will like it. Rilke was German and I don't know if his poem sounds as good in English. I doubt it a little bit. But it is worth a try:

"I live my life in spreading rings that encompass all things.

I might never reach the last one, but I will try.

II circle around God, around the ancient tower, as I have circled for a thousand years;

and I still don’ t know if I am a falcon, a storm,

or an endless song."

Take care 👍

Ppiman profile image
Ppiman in reply to dd111

Thank you again. I don't know Rilke at all well, and in my collection of poems, I found but a single line from him: “Be patient with all that is unsolved in your heart.”

You've set me off now to read more from him. Poetry rarely translates well, of course, but some of its imagery still resonates deeply. In the quotation you gave, for example, the phrase, "the ancient tower" is beautifully expressed.

Steve

What an uplifting post and very moving.Your English writing is better than many living here !

Bless you for taking the time to remind us of the importance of love and friendship and the special gift of life .

Take care xx

dd111 profile image
dd111 in reply to wilsond

Thank you, and take care!

Welcome, Stefan! Guten tag! I wish my German was as good as your English! Your sentiments are very true and uplifting. I am grateful every day for the friends I have.

dd111 profile image
dd111 in reply to MarinaT

I'm glad to read that, because there is simply nothing more precious in life.

Have a nice day 😉

Herzlich willkomnen Stefan! Your post is very inspiring and your English is great. Much better than my German which has mainly been forgotten since school. I have had afib since 2015 and have found that recently my episodes have become more frequent. But they have also become less violent and I don't worry as much about them. I am learning to be more accepting of having this condition. You do not say anything about how you are being treated for this condition. Please continue posting .

dd111 profile image
dd111 in reply to Auriculaire

Hello, i find it very interesting that your episodes have become more frequent but less violent. What does that mean exactly? How often did they came before and how often do they come now? What exactly is different in the way you feel?

I'm actually not being treated at all so far. I am taking a minimal dose of betablockers (1.25 mg nebivolol) and think I will discontinue those as well since I don't feel any difference. I am also not taking a blood thinner because of my Chad score.

I am taking magnesium, potassium, crataegus and vitamin c and b-complex. Whether it helps with the more stable, I don't know. I clearly have some triggers that I need to avoid: emotional stress, alcohol, and not enough sleep. What really helps me is acupuncture. It has been found that a certain acupuncture concept, helps to avoid the heart rebuilding you through the episodes. So I hope to get through until gentler ablationtechniques are available.

Best regards ...

Auriculaire profile image
Auriculaire in reply to dd111

I was taken to hospital in an ambulance in July 2015 after calling the paramedics. My heart suddenly started beating very fast and erratically and felt like a bunch of frogs having a fight in my chest. It was very scary. I think I had had a similar attack in oct 2014 but it was not as violent feeling. It did not last long and when I saw my GP the next day all was normal. Both times it was after taking Cipro. I did not have another episode till May 2017 and this time I woke up feeling odd . I guessed it was afib as I started the constant trips to the loo which I get but it was not very obvious heartwise . In 2018 I had 3 episodes , none in 2019 , 7 last year and so far 3 this year. Usually they start with a few ectopics but these are quite gentle now. I try and take my pulse and get out my Kardia which confirms the afib but there is none of that horrible pounding feeling in my chest like I had at first. I don't feel as anxious about them as I used to do.

dd111 profile image
dd111 in reply to Auriculaire

I am very happy for you and wish could say the Same.

With me, unfortunately, the severity of the episodes has not changed, but remain consistently violent and come like clockwork about once every four weeks.

Auriculaire profile image
Auriculaire in reply to dd111

Lots of people here have said they have been helped by ablations. I think if I had an afib burden like yours I would seriously consider one. I really hope the acupuncture works out. I had chronic sinusitis treated with it very successfully 30 years ago.

Welcome to the group Stefan. Your English is very good. I am ashamed to say that after living for 10 years in Germany, my written German is terrible. One day at a time is my new motto. Take care and bless you.

Thanks a lot, and yes, one day at a time. Take care and God bless...

My God, how thoroughly fluent you are in getting across such a gem of knowledge. We may forget the idea of what you say when we're in the midst of a bad a-fib episode, or whatever other ailment/disease we have, but this knowledge brings everything back in perspective. Thanks for conveying it so well.

dd111 profile image
dd111 in reply to Snowgirl65

Thanks for the nice reply.It's good if we remind each other of the essentials from time to time.

Best regards from Berlin ☺️

Beautiful words Stefam, thank you for the reminder of what is really important in life. Welcome to the forum. Mariah xxx

dd111 profile image
dd111 in reply to mariah222

Thank you for the welcome as well. Take care and have a great day 😉

Wunderbarer gedanke, Stefan!

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