Newly Diagnosed: Hi, Just wanted to... - Atrial Fibrillati...

Atrial Fibrillation Support

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Newly Diagnosed

Xombi profile image
18 Replies

Hi,

Just wanted to come on here to read others experiences etc mainly.

I have literally just been diagnosed with afib this week, I have had no symptoms (in the past had palps a couple of years back but at the time not diagnosed as doctors and hospitals couldn't detect anything)

This Sunday just gone I noticed my fitbit was regularly showing pulse up in the 140's so on Monday I rang 111 as my doctors was closed for training, they eventually contacted my doctors and they had me come in that evening.

The doctor could detect my heart beating fast so upped my bisoprolol to 5mg (I was on 2.5mg after one of the palpatation bouts a year or teo back as a precaution despite nothing being found) and asked me to attend an ecg on Wed which I did.

This picked up some anomalies so I got sent to the local hospitals AAU after some tests they found I had a bad infection and afib pulse was as high as 160 when they did the first ecg

They gave me antibiotics and other meds and discharged me but said to return the next day, I returned for more antibiotics and meds and again was discharged but my bisoprolol was increased to 10mg a day, 125mg of digoxin and 3mg of Warfarin (have my first INR test tomorrow to check this is working)

I am still in afib over night fitbit picks up pulses from 45 to 150 however I take those with a pinch of salt as I know the fitbit was a fair bit different to the results I was seeing when in hospital on the ecg so it's useful to see something is still wrong but I don't think it can detect pulse as accurately with Afib.

I have bought a portable ecg just so I can get a more accurate reading hopefully, it still shows it flipping all over the place but seems to currently be staying under 140 fairly often into the 110 or lower which if correct is something I guess.

The AAU consultant said I would be referred to cardiology for a heart scan and to discuss any next steps so just waiting on these appointments now.

Not sure what I expect in response to this post but just needed to put it in writing as it's quite scary when your waiting and newly diagnosed which I'm sure alot of people here relate too.

If you read this thanks for taking the time.

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Xombi profile image
Xombi
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18 Replies
BobD profile image
BobDVolunteer

Why not go to our main website Atrial Fibrillation Association and read till you drop then ask us here any questions. AF is scary when first diaganosed but not as bad as some conditions . It can be a long journey

Gumbie_Cat profile image
Gumbie_Cat

I was diagnosed last year, and it is worrying while you wait for that first appointment. They have made sure that you’re safe for now - especially with the anticoagulant. Also getting that rate lower.

It s one of those conditions that is different in everyone, best thing is to read around it, as Bob says.

I am now in persistent AFib, following a failed ablation - and have been told that further procedures are not advised. It’s taken me a while, but now I’m getting along fine with it. However, I’m in my late 60s and happy with just being able to go on a good walk without my back hurting too much! My legs feel tired on hills and stairs, but I just push on a bit more slowly.

However, you will find lots of people in the forum who have carried on with treatments that have really got them free of AFib and back in sinus rhythm. So, arm yourself with the information so that you can ask all the questions.

secondtry profile image
secondtry

The best advice I can give you from my own personal experience is use the diagnosis to drive you to improve your lifestyle (loads of posts on that here), which without AF you almost certainly wouldn't have done. The aim to stop the AF and at there same time dodge a number of other chronic diseases we seem to succumb to in later life.

Threecats profile image
Threecats

Hi Xombi

Welcome to the club no one wants to join! It is all very scary in the beginning for sure, after all, it is our hearts that are acting up, an organ that I, for one, totally took for granted until it decided otherwise!

When I first had AF episodes and my heart was galloping away in the 180s and trying to escape from my chest I was convinced I was about to expire and was blue lighted to A&E twice. However, with the aid of beta-blockers to slow things down a bit during episodes, I began to realise I would live after all….. and so will you! I’m in persistent AF now and like Gumbie Cat, find that it’s actually ok. The Digoxin that you’ve started will take a few weeks to have its full effect, I understand, so you may well find your heart rate reduces further in time.

As both BobD and Gumbie Cat have said, the key to dealing with this pesky condition is knowledge, so read up all you can about it, as this will help you get questions together for when you have your cardiology appointment. I can recommend a book by Dr John Day called The AFib Cure. There is a wealth of information in there on ways you can help yourself, in addition to medications, ablations and so forth. Some common triggers include stress, caffeine, alcohol and high blood pressure, so addressing lifestyle and making some changes if necessary will also play a part.

Finally, there is a wealth of information on the forum here and a wonderful group of supportive folk who are always willing to answer questions. Just remember, there’s no such thing as a daft one - question that is, not forum member😄

All the best to you, TC

CDreamer profile image
CDreamer

Hi and welcome. Some really good advice in replies above. As to what to expect then - blood tests first as some conditions can be root cause of AF and when treated, AF improves examples would be Thyroid dysfunction and Sleep Apnea (although no blood test for that yet!)

Secondly BP readings - high BP can be a cause and then a scan of your heart to look at the heart structure as although AF is an electrical problem, structural defects such as leaky valves can also be a cause. AF is sometimes a symptoms rather than a disease in itself so all underlying known causes need to be ruled out and if found, needs to be treated.

Lifestyle is also a well known cause - not just being overweight, although that doesn’t help! Do you sleep well? Stress has a detrimental affect on health generally but especially AF. Nutrition - eg: do you get enough electrolytes in your diet. Alcohol and caffeine can be antagonists for some but not others so worth cutting out both for a few weeks to see if that helps, it doesn’t always.

The variable are endless with AF and after managing it for over 15 years now and done the gamut of treatments - drugs, ablation and then pacemaker I can say AF often just has a mind of it’s own.

When you go to Cardiology - and depending where you live you may need to wait some time - ask if you are seeing an arrythmia specialist, it makes a difference.

Here is a link to AFA for all info heartrhythmalliance.org/afa...

Just one question - you were prescribed Wafarin which is most unnusual these days unless you already have another condition for which the more modern anticoagulants are contraindicated so you might ask that question. All useful info on the AFA website on anticoagulation and the need for them.

Do come back and ask any questions that are on your mind. Best wishes

CDreamer profile image
CDreamer

PS - I would add that over exercising is also a cause as are infections - hence really important to clear the infection.

Xombi profile image
Xombi

Thanks all for the replies they have really helped, with regards to the Warfarin I'm not sure why that was chosen but am on a gair few meds (Type 2 diabetic, high blood pressure and cholesterol so maybe there I'd an interaction possibility between one of my other meds and the normal anti coag?)

Anyway I will go and read up and wait for the next steps.

Buffafly profile image
Buffafly in reply toXombi

All those conditions would predispose you to AF so as previously suggested a long hard look at your lifestyle seems a very good idea ❤️‍🩹

Ppiman profile image
Ppiman in reply toXombi

It’s interesting as warfarin is the drug with so many interactions, even with foods. The newer drugs seen not to interact with much at all.

I would maybe question it as something like apixaban would be so much more convenient. .

Steve

Ppiman profile image
Ppiman

Welcome to the forum and the world of AF! An ultrasound echocardiogram would show the state of your heart and might show why your ectopic beats and AF have increased; a cardiac MRI stress test is also a possibility, but unlikely initially on the NHS, and is said to be the gold standard. A private scan would be around £1000 plus £250 for a cardiologist consultation.

I'm surprised you were given warfarin instead of a newer DOAC drug such as apixaban. There must be a reason for that, I guess. Also, I was surprised you were taking 2.5mg bisoprolol only for ectopic beats. This suggests you had them quite badly. I take 1.25mg, previously on an as needed basis, but recently daily, and that works quite well.

You say you have bought a home ECG. I initially bought an Apple Watch, which is excellent, but, following my ablation and some increased ectopic beats, I went for a Kardia. Now. recently, I bought a Wellue AI 24-hour monitor which has been by far the best as it picks up so much that the others miss.

Steve

Buffafly profile image
Buffafly in reply toPpiman

Ectopic beats weren’t mentioned, ‘palps’ was the description but no diagnosis.

Ppiman profile image
Ppiman in reply toBuffafly

Aha - it’s hard to know what a “palpitation” is but I think they are often caused by ectopic beats. I suspect those, somehow, bring the heartbeat to be a little more forceful and noticeable.

Steve

jd2004 profile image
jd2004

I think it’s difficult not to worry. I became quite obsessive about rate when I was in AFib. From what you describe I think the medics are following a protocol of tweaking your Bisoprolol and referring you for an echo. Depending on what they find you may be given flecainide. As with many in here I have a Kardia attached to my phone and use it once or twice a day to check rate. Also if you have an infection this will play havoc with your heart rate as happened with me.

dmac4646 profile image
dmac4646

Could be simply the infection that's driving it - you will see once infection under control.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

HI XOMBI not Zombie!

I was on metoprolol and then changed to Bisoprolol. Dosed up to 10mg without being under CONTROL of H/R.

After consultation with private Heart Specialist, I now take CCB Diltiazem 120mg AM and 2.5mg BB Bisoprolol at PM.

With me the Calcium Channel Blocker controls my Heart Rate down to 62-69 at rest Day and Beta Bocker controls my BP.

47H/R at Night asleep which stays there as avge even though change in meds.

Both work on Rythmn AF.

With a person interested and finds your history interesting, they and not your Dr who are inclined to put dosages up instead of changing.

Digoxin like Warfin are very old drugs.

Take 110mg PRADAXA twice daily and it is reversible.

A 24-hr monitor would be helpful.

Cheri JOY. 74. (NZ)

Rainfern profile image
Rainfern

hi Xombi, it certainly is scary when you first get a diagnosis of AF. It has taken me some time to understand how anxiety affects AF - and how much more I notice the symptoms when I’m feeling stressed. I have found relaxation, techniques and meditation very useful.

Being on this forum has helped me to understand that AF is not going to kill me and to be a lot more relaxed about the condition. Advice to get on with my life was probably the most helpful I’ve ever had, although it annoyed me slightly at the time. (Sorry, Bob - I didn’t believe that would be possible!) Secondly, finding a good EP cardiologist with up-to-date knowledge of treatment options. My GP is a nice chap but really doesn’t know a lot about recent developments in AF procedures. I did pay for a private consultation with an EP cardiologist who also works in NHS. it didn’t cost as much as I’d imagined though it went against my principles going private!

My life has changed a little - that’s called adaptation. And I’m on a long waiting list for an ablation. And while this procedure is most frequently successful, the good people on this forum have taught me that my life won’t end whatever the outcome.

Good luck on your journey.

bassets profile image
bassets

Hi - welcome. You have a lot of great advice here and I hope it will help. Read up, know what this condition means and try to see an EP for the best help. And try to stop worrying! It took me over a year to stop panicking which didn't help at all. You will be ok! Let us know how you are getting on. Best of luck x

mav7 profile image
mav7

 Xombi

I am still in afib over night fitbit picks up pulses from 45 to 150

Suggest you consult with your doctor or nurse about your heart rate. Depending on how long you stay at the 150 rate, may want to change your medication.

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