Feeling a little lost.

[rubyred]

I’m new to AF and could really do with a bit of support. I had been unwell for some time. Struggled all year to lose weight but zilch came off. I was getting bigger. End of November I was admitted to A&E unable to breath when lying down and was panting. (Had been getting breathless when walking) Pulse taken and ECG done within minutes of arriving, moved straight into resus. I had a heart rate of 177 BPM. Given drugs to lower heart rate. X-ray at my bed and that showed fluid on lungs given more drugs to clear it. Diagnosed with Atrial fibrillation. Was admitted to hospital and discharged couple days later. Told all ok. I was 0% risk of a stroke. Phew felt lucky.

3 days later second emergency admission. Scan at bed showed heart was very weak. Echocardiogram showed the atrial fibrillation and the lower left has dilated cardiomyopathy and was functioning at 27%. discharged few days later with 6 different medication feeling much better. The consultant feels confident that I am recoverable. He believes that the atrial fibrillation has caused the cardiomyopathy and that once I have a cardioversion it will then correct the other.

Got fingers crossed he is correct and it’s not the other way round.

I have to wait 6 weeks on anticoagulants. Unfortunately due to corona waiting lists are a bit up and down and will be at least April maybe May.

I’m taking.

2.5mg Ramipril (will be getting gradual increase to 10mg)

250mcg Digoxin

5mg Bisoprolol fumarate

5mg Apixaban twice a day

1mg Bumetanide twice a day

12.5 mg Spironolactone

The meds keep my heart rate at around 50 to 60 BPM and blood pressure wasn’t an issue and is in normal ranges 120/80

I also lost a stone in weight. It had all been fluid buildup

I’m also on T3 Thyroid medication which has been reduced in agreement with cardiology and endocrine.

I’ve U&E bloods with digoxin level taken not back till Tuesday

I feel pretty wiped out at the minute. The cardiology nurse has said I’m getting a triple whammy as the condition plus the meds plus the thyroid med reduction will all cause fatigue so got a super hit of it ☹️

Please can I ask are there many on here with permanent AF and also with a secondary issue.

Has cardioversion worked for you.

I’m hoping the cardioversion works. Does anyone know that by having to wait possibly up to 6 months maybe longer for one if my heart will keep deteriorating and it’s less likely to work.

If I do have to wait for the cardioversion is it a case that the medication is not only keeping heart rate lower but also helping go heal the cardiomyopathy.

Any help or advice would be most appreciated as feeling a bit scared. Feel like I’ve still got a lot of living I still want to do.

Thank you 😊

[Paulbounce]

Ruby wrote

"The consultant feels confident that I am recoverable"

Great news.

And

"The meds keep my heart rate at around 50 to 60 BPM and blood pressure wasn’t an issue and is in normal ranges 120/80"

Even better news.

And

"Has cardioversion worked for you"

Yep 100%. I of course can't promise it will work for you but looking good for you so far.

And

"I also lost a stone in weight"

Well done - regardless of the reason that helps lower your BMI. Well done you.

And

"Feel like I’ve still got a lot of living I still want to do"

You'll do that. Don't be scared (I know it's scary) but you are already on the right path. You'll get there sweetheart - you'll see.

You also wrote

"Please can I ask are there many on here with permanent AF"

Yes many. With rate and rhythm control you'll be ok IMO.

I bet 2021 will bring you good news all round. Lets wait and see

Paul

[rubyred in reply to Paulbounce]

Thank you Paul for the positive boost. Roll on 2021 I’m feeling ready for it x

[Hidden]

Hi ruby, let’s see what we can do to help you feel a little less anxious. The first thing is, thyroid disorders often have an impact on AF so it’s important to do everything possible to get in range as this can reduce the affects of your AF. It would help if you found out as much as you can and I will add a link at the end which will help you. It will also provide information on having a cardioversion. You may know some of this already but there are 3 types of AF - Paroxysmal (PAF) which comes and goes without warning, Persistent and Permanent which is 24/7. The difference is that Persistent can be reverted with various forms of treatment and Permanent means that all attempts to revert have been exhausted and the patient and doctors agree that the best route forward is to control the AF with medication. The assumption therefore is that you are not necessarily Permanent, but possibly Persistent otherwise there would be little point in having a Cardioversion.

If the Cardioversion works, even for a short period, it means that you could be considered a suitable candidate for an ablation but the whole process is likely to take a while.

Please check out the following link.

bhf.org.uk/informationsuppo...

As Paul has pointed out, there are lots of positives so far so you need to build on them. Please ask if you need any more info......

[Hidden in reply to Hidden]

Ought to mention that I’m not medically trained but I would have thought that whilst your heart rate remains well controlled and within normal limits, waiting for the CV should not cause a problem.

[rubyred in reply to Hidden]

Thank you flapjack, what you say makes sense. I wasn’t aware of how many types of AF but until I know any different I’ve got my mindset in the persistent type. Roll on cardioversion. Got fingers crossed it works.

Thank you for the link. Will have a good read.

Xx

[cuore in reply to rubyred]

Once a person becomes persistent the heart is quick to remodel. In the first six months of persistent 4 rotar areas can develop, and beyond that time period up to seven for the one year mark when one becomes long-standing persistent. ( suggested reading Dr. Michael Haissaguerre)

I had my first ablation (three total now) at the six month stage. I was one of the most complicated cases and had I not had that ablation at the six month stage, I never would have been able to return to sinus. So waiting times in persistent can cause problems of not being able to return to sinus, and also , if waiting too long, there will be a need for more than one ablation. Hope a cancellation will shorten your time period for a cardioversion.

[Singwell]

Definitely feel for you but agree with all the positive responses here. If it's any help to you - I recently signed up for catheter ablation and my EP said that the waiting list has shortened due to the pandemic. Apparently people don't want to go to hospital and are postponing procedures and also the NHS here (assuming you're in the UK?)want to prioritise those recently hospitalised with conditions like ours. What I'm saying is you should go near the top of the list. 🤞 For you.

[rubyred in reply to Singwell]

Hiya yes I’m in the uk. When I was in hospital cardiologist said cardioversion in 6 weeks. His secretary confirmed he was a little adventurous for timing.

I spoke to the waiting list team. They advised that currently as long as no dates are pulled I will be due 16 or 30 April. There is mumbling of the January ones in my area being pulled as we have gone to tier 4 ☹️ that would push me on to may.

I did say would be happy to take any cancellations.

Because of Covid he said they need the cancellations 4 to 5 days in advance and currently any cancellations are either only one or 2 days notice. They need the 4 or 5 days because of getting the Covid test. I offered if that was a sticking point to get the Covid test I would be happy to get it privately. Unfortunately due to protocol it needs to be the NHS within the hospital.

Told him happy to jump through hoops.

That said he was nice chap and has marked me as happy for short notice cancellation.

😊 xx

[Singwell in reply to rubyred]

Fingers firmly crossed

[rubyred in reply to Singwell]

Thank you xxx

[dani777 in reply to Singwell]

top of the list? where i am, they've used the pandemic as an excuse not to do any procedures on people - to put them off as long as possible. you go into a local hospital's A & E and it's empty, and if you phone them before hand to ask how busy they are, they now refuse to tell you. i think it's shameful. even my GP said he didn't understand why so many patients weren't having procedures done over summer, when there was a drop in infections. he said he also noticed staff "standing around" and hardly any patients. so i guess it depends on where you are. maybe some hospitals are better than others. but i think it's misleading to give any impression that patients have gone to the "top of the list" during this pandemic, when my experience has been that many have been abandoned, or at least left on indefinite hold.

[Singwell in reply to dani777]

I'm reporting exactly what I was told back on December 18th. I was given to understand that my EPs department at QEH Birmingham was actively seeking patients from other areas. He told me two or three hospitals were making space for procedures such as ablation that are relatively straightforward as it would assist in keeping people out of A and E, leaving more space for dealing with COVID emergencies. Nothing misleading about what I've said here. However, it may no longer be the case due to the escalation of the pandemic but I believe this was reflected in my original reply.

[pip_pip]

Hi Rubyred.

When I was diagnosed 20 years ago with AF I also had Dilated Cardiomyopathy. Once the AF was healed, which took a few years with three ablations the Cardiomyopthy reversed and since ten years now there is no sign of it except on my hospital notes from previous times. The cardioversions I had at that time prior to ablation did not last. But then they might help you along the road. I look upon all this as a journey, which took some time, but got there in the end. My number one advice is "Don't panic".

Phil

[rubyred in reply to pip_pip]

Wow Phil, thank you for sharing. I can’t tell you how reassuring to hear your well and it’s eventually worked.

I think looking back I’ve maybe had it some time but can’t pinpoint when it started.

Xx

[Morzine]

I just want to say, chin up, you’ve been through such a scary time and I’m not surprised you feel totally washed out/ tired out and scared. You’ve lost weight, a bonus, they have put you in the meds, to help. The meds I don’t know some of them but I do know Bisoprolol well and that knocked me out tired wise fir weeks till it calmed down.Flapjack is so right in everything he’s written and I can’t add to that, but I will say we’ve all been there with the AFib diagnosis which knocked our confidence, our vision of our life ahead. It all seems grim mainly because we never seem to be explained to that well and mainly because we feel so grotty ......the combination then makes the future look bleak. But trust me It isn’t at all......as Pip Pip said see this as a journey....you’ve covered half of it.....diagnosis.....then tablets.....then cardio version......and if you then are paf....plump fir an ablation later......I’m really no expert, but I’ve been in here now since mine started two and half years back, everyone helped me back in my early days of total fear..I truly thought that’s it fir me my life is over....thankfully I found this forum! There is a good base of knowledge here from folk who have been through it all...

So try not to panic I know it’s nit easy as you’ve had an awful start to this....

If it helps I can tell you honestly that I’ve gone from being scared witless to now rarely thinking of my heart apart from taking my tablets....of course if it does the slightest twitch I’m alert thinking what’s that , but that’s one side effect from my early days!!

Chin up,

Sue

[rubyred in reply to Morzine]

Thank you Sue, lots of what you have said have hit home with me.

It’s all been so new and a shock for me and the family. Apparently I’m the lynch pin so they tell me I best be getting myself fit and well.

Was totally shocked at the weight loss. Never for one mi Ute thought it was fluid build up. I’m on restricted fluid intake at the minute and daily weighing so at least I should spot anything untoward quickly 🤞

[Morzine in reply to rubyred]

Funnily I lost a stone after this happened and I lost it quick , not trying but I fekt so grotty I could eat as much and I couldn’t drink any wine either, in fact I thought my life as I knew it was over, it happened on holiday in Spain, taken in hospital there, then we headed home to france where I live, I was like a startled rabbit I had never even heard of it. Trust me you will get used to this it will calm down in your brain and it’s the getting over the fear that’s hard, it won’t kill you. The tablets can take a lot of getting used to, some folk just dint get in with some tablets and get thrm changed, but they do need adjusting to, as I said Bisoprolol is a tricky tablet it takes time.

You will be you again, it’s just at the moment the you u know is floundering under the pressure of all this “AFib “ knowkefge being dumped on your brain to cope with.....u will pop out again and smile,

Sue

[rubyred in reply to Morzine]

Wow well scary to be in a different country. Was blown away with my stone loss. Been in all sorts of plans through lock down. You say yes following. You write food diary. It’s good but zilch comes off. Laughing now to think gone in a week.

I absolutely get your startled rabbit feeling as defo felt it when in hospital abs afterwards it’s the shock. Your life is totally turned upside down.

I help my daughter with school runs and still allowed as classed as child care bubble. My youngest grandson is ASD and we are waiting for special school. He is currently still in mainstream but part time. My daughter worries I shouldn’t collect him but he is only in school 2 hours and doesn’t mix with the others. All being well within next few weeks he will get his place. Not easy.

I’ve read some people really struggle with some of the meds. To be honest when I first started I threw up so bad I had to recreate my medication pot to try and work out what I hadn’t had and what may or may not have gone down the loo. A very nice fruity bag of jellies helped during first week. I had a jelly after every pill.

Thank you so so much for your messages xxx

[gateman]

I've got permanent af.Initially I had a cardio version with 5 other people. It only worked for one of us and I understand they rarely last for long.I was then put on bisoprolol and apixaban. No further treatment or check ups and its been 7 yrs.

So be careful that your not sidelined and forgotten about.

Good luck

[Sfhmgusa]

Hi Rubyred I had a couple of months between ablations where my Heart got really Tired and so I had several of the symptoms of Heart failure ( Fluid build up difficulty sleeping lying down, really exhausted ) My Cardio said it would be solved and he was right! So You can really believe what you have been told, it will take a bit of time but they will be able to sort you out I am sure

Steve

[Ianc2]

Hi RubyyredMy old friend Arthur Stone has come to see me as he does every year, just after XMAS. If I dump most of my carbs he starts to think about going away, usually after hanging about for 6 weeks..

[rubyred in reply to Ianc2]

😂 nightmare isn’t it. I’ve managed to keep it off over Xmas apart from 2lb. I am on restricted fluid intake 1.5 to 2 litre per day. The closer I get to 2 litres I have bit of a cough. Also today I’m pretty certain bit of fluid starting to build. Looks puffy on my face one side bit more than the other. Developed lob sided boobs too. Best get them sorted before the sunshine 🤣. Got to keep smiling. You will soon shift any excess. Dropping the carbs is like the old SlimmingWorld red days. Meat, fish veg salad no starch or carbs. Xx good luck for the new year. Xx