A Fib Friends!

Hi, I was diagnosed with A Fib in September 2015, it has been hard at times to deal with the symptoms and even harder to help my family understand how A Fib affects me. I would love to be able to talk to people who also have A Fib and can relate to how I feel and maybe even give advice to each other to help better deal with this crazy problem we have. To all those with A Fib please remember even though it may feel like it you are not alone.

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  • I do understand you.

    My husband is a little more understanding now.

    But daughters just font get it at all.

    Where do you live?

    Are there sny support groups in your hospital?

    Lots of wonderful supportive people in here.

  • A fib is a real pest and also very frightening. Mine started in 2003 and i was put on flecainide which kept it under control for 10 years. It started again in 2014 when i was on holiday. I had an ablation in March, August and December 2015. That was quite a year my whole life was centered around worrying about if and when the irregular rythmn would return. I do sympathise with your situation. I am pleased to report that since las December I have been free from AF and my life is back to normal. I feel asthough my confidence has returned. I still take the same medication but i am happy to do that as its like a bit of an insurance policy. You are right it is a crazy problem but huge strides have been made in the treatment of AF no one really understands what its like until they have experienced the problem. Keep the faith and fingers crossed you will soon be ferling much better. Best wishes to you

  • My family too find it difficult to understand how I'm feeling and find it frustrating when I'm restricted with the symptoms of AF. All of which I get. The breathlessness, really puts a stop to things. Alongside the irregular heartbeat which I'm constantly aware of. The feelings of panic when in full blown AF. The do I don't I dilemma of going to A & E. All have an effect on the family. But it's just a case of getting on day by day. Getting the best advice from wherever you can and trying to remain positive. Knowing you're not alone in your battle also is reassuring

  • Explaining AF is so difficult. When it's described as " palpitations" I become extremely cross.

    I now explain that I have an electrical problem with my heart, that it short circuits. I say that this results in blood , and therefore oxygen, not getting round my body so I can't function properly. It is necessary for me to wait until it stops fibrillating and I will feel better again.

    It's no good trying to soldier on when you feel like death-warmed-up. This only makes the AF worse. Get the family used to you needing to rest during an attack.

  • Or if someone is in persistent they may very well need rests regularly!!!

  • It is a frustrating condition as there really isn't any outward signs or symptoms and it impossible to explain what you feel or what you are going through. Luckily I only really suffer the breathlessness and occasional fatigue, so I know I have it a lot better than most. I find being in Persistent AF better also as I'm not waiting for an episode and therefore able to manage it better

  • I understand how you feel. I have had bouts of AF since 2005, had CVs which did put me back into normal rhythm but now in permanent AF. EP not keen on ablation/pacemaker due to other issues, and he is not sure it will help. I have been on various medications including amiodorone, but now only on digoxin and Tildiem. It is fairly well controlled although permanent not fast so EP is happy to continue like this. Due to other heart and lung problems extremely restricted now, but I battle on. I would ask your gp/hospital if there are any support groups in your area. But having found this site, it really helps to be able to hear from other people in the same boat. Good luck

  • Hi Happymom - Welcome to our forum.

    Well you've certainly come to the right place if you want to talk to others with A Fib, as we all have it on here. No one need ever feel alone because the support on this webpage is second to none. This forum has been going for many years and I've certainly loved being a part of it and have gained a far better knowledge of my condition by being a member. If you have any specific questions then ask away, or you can type a topic in the box on the right at the top of this page and then read others experiences.

    Once again welcome.

    Jean

  • Thanks Jean I appreciate it! :)

  • Hi Happymom, this is Deadwoodmike. You are right about people not understanding afib. I first had mine diagnosed in 1996. With medication I was afib free most of the time. Sometimes I would go five months or so with no episodes, but whenever it kicked in it would ruin my day. I finally had a cryo balloon ablation on July 13th. I did have an eight hour episode on the 21st. I think it was caused by too much hot sun, and the going to the dentist. It's not uncommon to have afib episodes in the first few weeks to months after an ablation. Don't panic when it happens, and avoid alcohol. I would recommend getting the ablation. I am SICK AND TIRED OF AFIB! I hope I don't need a second one, but if I have to I will. I hope you get yours resolved soon. Good luck!😊

  • Good luck with the ablation deadwoodmike! I hope everything goes well and you have no more worries. I'm on Cartia XT and it seems to be working pretty good, but I still get palpitations sometimes and I can feel a little arrhythmia here and there! I also hate A Fib it's scary and it can stop you right in your tracks!

  • I feel absolutely shattered sometimes. Problem is, I look so well so others just don't understand why I feel so bad. There's no pain of course so we don't writhe across the floor like some demented hooligan ! Perhaps we should then maybe a little more sympathy and understanding my come our way.

    C'est la vie (As they say in Iceland)

  • I know what you mean mycallc, just because we don't look like we are suck doesn't mean we aren't dealing with real issues that affect our health and our day to day lives. It's been so wonderful finding other people with A fib that understand how I feel and know what it's like to have this.

  • Well Happymom, on a brighter note I do play badminton which is pretty hard going. Problem is I come off the court sweating pints and breathing hard when the other players still look as cool as when they went on. When I explain that because my heart is out of rhythm and with a leaky valve I have problems getting enough oxygen around, I just get strange looks.

    On another brighter note though, I have had AF now for 11 years and reckon I cope better now than when it first started up. Then I was devastated but over the years I have come to terms with it and life is pretty good; far more good days than bad. Unfortunately, 2 ablations and 1 cardioversion failed but I know many people with far worse health conditions than mine. Therefore, I count my blessings. Best wishes and be the boss.

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