New and Scared: Hi everybody I have for... - Atrial Fibrillati...

Atrial Fibrillation Support

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New and Scared

32 Replies

Hi everybody

I have for sometime been having some strange things happening to me, it all now has fallen into place.

Last year after I got married, my fingers, my knees and ankle all on the left hand side started to swell, my Dr did some many test (blood) and something kept coming back but the Dr could not put it down to anything.

9 months later I moved house / area, and by now was suffering with difficulties walking up flight of stairs, as becoming breathless, so new Dr offered to do ECG, Puffer Test, Bloods to rule out heart / lungs/ kidneys.

On the morning of ECG which was done at Dr, all was OK, 5 and half hours later I am in ambulance unable to breath and pains running down my left arm.

After a 5 day stay and loads of test, I diagrosed with AF, mummer, and leaking vales.

6 weeks later I have only just feel like I have come out of the fog, in fact I spent a whole day at seaside with my 6 year and the watchful eye of my parents on Friday, and today I have been shopping, made cakes for forth coming birthday party, and cooked a big pot of chill corn carne.

I am awaiting the stop/start thing and on loads of tablets.

So here looking forward to making new friends

Karen x x x

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32 Replies
souljacs4 profile image
souljacs4

Hi Karen please dont be scared there are so many nice people on this site who can give you help and advice its all a bit confusing at first but there are lots of treatments that can help with AF.

GivEmkeL profile image
GivEmkeL

Hi, Karen! I'm so happy that you found your way to this community! Everyone here is so helpful and very supportive as we all are along this AF path in one way or another. Hopefully, you will feel less worried and frightened as you come to learn more about about the heart problems and treatment options before you. Again, welcome! Please know that you're not alone! ~ KeL

Rellim296 profile image
Rellim296

So sorry to hear of all your difficulties, but welcome to the world of AF. Sounds like you are beginning to get onto an even keel after a stormy spell.

We are all different, with different symptoms, some have AF all the time, others occasionally. Some have nothing but AF, others have a number of different issues as well. Some of us are old and have had years of experience of silly heartbeats but a lot of younger people are members too. We all understand what it's like and we share the same worries. Lots of people take the same medication and some take something different. There's nearly always someone who can cheer you up with a bit of useful knowledge, especially the wonderful volunteers.

kindred profile image
kindred

Hi Karen, I'm quite new to .AF and also have felt very frightened. I was diagnosed at A&E after going in with breathing difficulties. What a shock! I was previously pleased to get to age 58 without regular medication- and then BANG! I have been seen at the stroke prevention clinic since it started in April, a d on the Cardiologist's waiting list. I was too worried to wait so made an appointment privately. It was £190 very well spent as he has changed my meds, made appointments at his NHS clinic and explained such a lot. He reassured me that with anticoagulation I will not die of AF . He said that if I had a twin, same height, weight etc., without AF, my life expectancy, with AF, wouldn't be a day less than my twin!

I feel that I have a lot to learn about this condition and this site and all the sensible people on it are providing much of it. All the best to you and hope you get the support you need. X

Beancounter profile image
BeancounterVolunteer

Hi Crazykaz and welcome you are amongst friends and fellow sufferers

Sorry to hear about your diagnosis, and in a way at least that's a good thing, because it must have been much more scary not knowing what was wrong and having all those symptoms.

But nevertheless being diagnosed with AF (which you share with the other 1800 odd members of this forum) is really scary, and we understand that because we have all been there, every one of us, and I'm a six foot big guy (as some will testify) and I don't mind telling you I cried for a long time after my diagnosis, I thought that was the end and that for all intents and pupurses my life was over.

Good news, it isn't and not is yours, although it's really hard to take that in when you are newly diagnosed, there is a really good specialist in the US who says this.

"AF is seldom fatal, it just feels that way when you are having an attack"

And that's very true, and many here will testify.

OK so next steps are that they are going to try a cardioversion, (the stop start thingy) that's good news as it's really quick and really not a problem, and you sound young and that might put you straight back into normal rhythm (we call that NSR Normal Sinus Rhythm) Please search on the forum for cardioversion, there's been many posts about it and most of us have had at least one, and some more.

They'll probably also order an echocardiogram, (like an ultrasound of the heart) which will enable them to tell what is happening with your valves as well, and is that's no enough possible a diye cardiogram, which is equally easy you lie on a bed while they put you through a machine that take sort of vertical pictures of your heart, to make it show up, they inject a dye into you just as they take the pictures.

All of this will build up an overall information pack for your specialist, and you do need a specialist so let's hope your GP has a good one for you.

And that's really the next thing you need to do, read learn, and read some more, knowledge is power and will make you feel better, and more confident about your condition.

In the meantime we are here, to answer any question, no matter how basic, if we can help we will.

Be well

Ian

Tobw profile image
Tobw

Welcome to the forum Karen. I'll not go on for ages, all I'll say is that I've had AFib for at least seven years and this is, by far, the best site I've come across on the subject (I wish I had discovered it earlier) in that time. What makes is so is that people on here can relate to what you are going through and, as I discovered a few days ago, there is a degree of expertise present which raises it above other AFib forums I've seen - the fact that people are so friendly on here is a huge plus as well.

Japaholic profile image
Japaholic

Well Karen, when I arrived here I was in a right panic, I had been hospitalised twice in the same month, heart rate all over the place, mind all over the place too. I honestly thought I was going to die pretty sharpish. Some of the lovely people here talked me down, told me how things are. They showed me more compassion than the cardiology team at Lincoln County (With the exception of the Nurse K. who broke the boundaries of professional nursing and gave me a hug as its what she thought I needed).

I can say much thats not been said already. It is tough but you can learn to live with it. I still practise martial arts, granted not with the same vigour as before but still do what I can.

be well.

If you need to chill and are feeling anxious I cant speak highly enough of acupuncture.

PS - Thanks again to those who talked me down, i havent fogtooten what you did for me, a complete stranger

PPS - Fogtooten! What on earth is that!!

Mamamarilyn profile image
Mamamarilyn in reply toJapaholic

I guess it's rather like a HGV horn sounding when visibility is poor. At least that's how my heart feels when on AF....very loud and as if it's trying to find it's way through the fog!

in reply toJapaholic

Lovely word! I think Mamamarilyn has the definition. It's what you do when you sound your car horn in a thick fog :D

dedeottie profile image
dedeottie

Hey I love that word it's got a good feel about it. I think we should invent a meaning for it!

Rellim296 profile image
Rellim296 in reply todedeottie

A fogtoot is an extra loud horn for your car for use in poor visibility. Similar to foglights. Fogtooten is the plural - usually a multi tone one. Teutonic origin, hence the -en plural.

Mamamarilyn profile image
Mamamarilyn in reply toRellim296

Ha, I posted my definition before reading yours. Sounds as though you're a linguist, as am I!

Rellim296 profile image
Rellim296 in reply toMamamarilyn

Great minds... I'm more a fan of Nordic Noir than a linguist!

Mamamarilyn profile image
Mamamarilyn in reply toRellim296

Me too plus Montalbano!

Rellim296 profile image
Rellim296 in reply toMamamarilyn

Yes, so sunny in comparison!

Mamamarilyn profile image
Mamamarilyn in reply toRellim296

Indeed. Keep having to look up the swear words

In the English-Italian dictionary so that I can shock my ageing Italian friend! Beautiful language though. Just to keep on theme, Mr M can bring on my AF, you know!!

Rellim296 profile image
Rellim296 in reply toMamamarilyn

Gets your heart fluttering perhaps!

Mamamarilyn profile image
Mamamarilyn in reply toRellim296

Oooooh yesssss!

BobD profile image
BobDVolunteer in reply todedeottie

Flatulence as you are coming out of GA.

Mamamarilyn profile image
Mamamarilyn in reply toBobD

Mr B....really!! ROFL

CDreamer profile image
CDreamer

The others have said it, been there, got the T-shirt so just a Hi and very warm welcome from me.

Love fogtooten = memory loss caused by AF induced brain freeze?

jan-ran profile image
jan-ran

I love this forum! Leaves me lmao many times!

Japaholic profile image
Japaholic

I think "fogtooten" is finger spasticity induced by AF, I am 21 hours in to an episode after changing drugs this week. Not a happy bunny but still smiling.

Rellim296 profile image
Rellim296

How about 'My heart has fogtooten how to beat' as a description of AF?

Sorry, crazykaz, for being flippant when you started this with your history, but AF isn't all gloom and doom and didn't someone say laughter is the best medicine?

bebe7637 profile image
bebe7637

Well done for getting it sorted.

I am fairly new to PAF and know how terrifying it is.

Keep in touch

With us all on here. It is such a comfort.

I still panic when an attack happens but now know I'm not about to die !!

I now take Rivaroxaban to thin my blood and help prevent strokes.

No problem and much better than Warfarin. Some Docs are slow to tell you about it , but ASK , the cost has a lot to do with their reluctance to prescribe.

Hope you continue to feel better.

With you all the way. Bebe

Welcome to the forum, as you'll have worked out by now there are some marvellous people here who are a great comfort (some of us are also slightly crazy) :D Please don't be scared, I know we all are to start with but you will find with support and the right meds you will begin to feel better about AF. Have a look through the AFA website, that will answer a lot of your questions. And take care :)

Lis

jeanjeannie50 profile image
jeanjeannie50

Welcome to our forum Karen and fire away with any questions you may have. We are all here to offer support in any way we can. Big healing hug.

Jean

dedeottie profile image
dedeottie

Hi Karen. I hope you are feeling a bit less scared and alone now. As you can see there is lots of fun and laughter on this forum as well as fear and anxiety. For me it helps so much to be able to talk topeople who know how it all feels to have A.F. and to know that there are lots of us who manage to have active and fulfilling lives. If I hadn't found this sight I would not be so positive ! X

You lot are totally crazy but thanks for all replies xxx

Any one here local to me Romford ??

Kjporten profile image
Kjporten

What a great group of folks, I am going in for my first ablation this Friday,, can't wait to get off the drugs and get back to a more normal life. I have asked on this forum before but don't think I recieved a response. Have any of you had a cryo ablation? The freeze type in the left atrium.

Rellim296 profile image
Rellim296

Hi there, Kjporten. Good luck for Friday. An ablation can really made a huge difference, so hope it goes well for you.

Jollies profile image
Jollies

Love this thread. Not had a good weekend. On Sunday was managing to walk slowly up a hill when my 12 year old son zipped in front of me saying, "so how is the af then mum" hubby managed to warn him that he may then find out what an angry a fibber is like when she is trying to walk up a hill! ( I got to the top without stopping and son has survived!)

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