Lainie2875 update

[Lainie2875]

Hi all

Just thought I would update you. I have been home now 9 days on a cocktail of heart medications and diagnosed Heart Failure 😞 so when they say AF won’t kill you !!! When I read up about the heart failure it’s caused I then beg to differ.

I am not saying everyone diagnosed with Heart failure is going to die but the future for me at this moment in time is very frightening and unclear.

It’s early days they are trying out the drugs and I have an appointment on Tue with the Heart failure nurse so I will be going with a list of questions.

Currently I am very weak and constantly tired a trip to the supermarket wiped me out walking up one flight of stairs is hard work and my chest is constantly tight.

I am very low in mood and feel very fragile and emotional.

When I look at the stages of HF I am stage 4 how did I get here ??? 😥😞

[Jalia]

I am really sorry to hear this Lainie. Fortunately my heart failure after AF was resolved with diuretics and has not recurred but I am ever aware. I have some idea of what you are going through as I said in reply to your last post that it was a very frightening time. I even had my husband trawling through retirement flats as I thought I wouldn't be able to manage stairs and a larger house.

I'm sure you will get plenty of support from the heart failure nurse which should help to lift your mood and make the future look a bit brighter.

I believe that people should be made more aware of the dangers of heart failure with AF and that goes for some medics as well.

Sending all good wishes to you. Do please let us know how you get on.

J xx

[Buffafly]

Thanks for the update, I wondered how you are, sorry it’s such bad news. However I suggest you look at the BHF website because it has excellent info and some encouraging real life stories. Best wishes ❤️‍🩹

[Buffafly in reply to Buffafly]

PS Looked back at your previous posts and all I can say is AF won’t kill you unless you are neglected by the medics who are supposed to be looking after you 😠

[Singwell]

Very sorry to read this. You've been through a frightening time and must be feeling very low right now. I did wonder when you write that you'd 'always been a buffer and puffer' - because that's not normal. But it wasn't the time to say. Now you know what the problem is and let's hope you get a good medical regime and - maybe more importantly- that you get support and advice on how to manage.

[Lainie2875 in reply to Singwell]

What’s a buffer and a puffer ?

[Singwell in reply to Lainie2875]

Oh lord! Predictive text alert. I remembered (I hope correctly) that you wrote you often got out of.breath climbing stairs etc. Apologies if I got that wrong. Right now what you need is to focus on the positive things you can do.

[CDreamer]

Dear Lanie - I am sure we empathise with your concern and pain and hope you will take some heart from the previous caring responses.

I think what was meant when the phrase ‘AF won’t kill you’ is that it is not immediately life threatening but of course over time, if AF is not controlled it can cause HF in some people. HF is also not immediately life threatening and can be treated.

Also HF from other causes can cause AF so which comes first is also to be considered.

My OH was diagnosed with HF after being in persistent AF for some months but thankfully his AF is now well controlled and he is much better and at 88 pretty fit again.

His most recent EF from echo a few weeks ago is now normal.

I know it must be very scary for you right now but know that you have support from the forum.

Best wishes

[Lainie2875 in reply to CDreamer]

Thank you I do appreciate everyone’s support and advice on here this is why I came back to the group as the people who have the conditions know what your going through .I am sure a lot of my questions will be answered tomorrow.

X

[CDreamer in reply to Lainie2875]

Wishing you well, let us know how you get on.

[blulla1]

See if this may possibly help you. carrafibdietinfo.com/

[jimlad2]

Hi . . sorry to hear of your confirmed complications. This link from WebMd re the risks associated with AF seems pretty reasonable to me. webmd.com/heart-disease/atr...

[Ewloe]

I had massive heart attack cardiac arrest from blood clot 6 months ago. Had a stent fitted but was in constant AFib for 3 months when a cardio version reverted me to NSR but with PAF. I had an initial ejection fraction of 40% which put me in the heart failure category. With medications it’s now 45% still low but better than before. I’ve been told I’ll need to keep on with all the medications otherwise it’ll drop. My fatigue and what I can do is very slowly improving. Medications should help you improve your stamina and resilience. Fingers crossed for you. X

[Chris147]

Hi Lainie it is all a worry. I hope the nurse can put your mind at rest. Not sure how helpful this is but I just take one day at a time and try to practice mindfulness. If you think ot might be something for you the internet is good or your library for books or cd on being mindful. I have had af for 9 years and I have had to adapt my life I still do things but do them differently. Good luck stay positive and look after yourself. Chris x

[captainKFF]

Sorry I forgot to add how come your HF reached stage 4 without being warned or addressed by any medical staff when it was in earlier stages?Regards,

[Lainie2875 in reply to captainKFF]

I have had PAF for a number of years and was so sensitive to the beta blockers I was happy to remain on Anticoags only and I always reverted back the longest was 4 days and this happened 2 to 3 times a year so I resigned myself to living like that cos in between I was really well fit and active.Then in May 2020 I went into AF that lasted 10 days and was admitted to hospital they put me on Amiodarone short term as I did not want this drug

The day they discharged me I went back into NSR

I have had 3 ablations

I had another long episode in Nov and admission then cardioverted then following third ablation in Nov it came back it’s not reverted back.

So another admission and diagnosis of HF after 3 weeks of racing 160 I was repeatedly told not to go to A&E by Arythmia nurse ??? And this is the result.

Regards

[captainKFF]

I totally sympathize with you but I am surprised none of these medical professionals warned you or tested you for HF when it was in its early stages! Or did it just happen suddenly in the last few weeks?

[Lainie2875 in reply to captainKFF]

I had an echo in 2020 and one in Nov 21 that’s the one that showed the change and HF COVID seems to be the excuse for other conditions being missed or left. Since my admission in 2020 I have had 2 telephone appointments with my EP and that was about the AF which was settled at the timeIt’s like everything else you can’t just jump back in when things go wrong you are put on lists and have to wait

I am currently on a list for a Cardioversion that list is 26 weeks !!! Says it all really.

[JOY2THEWORLD49]

Hi. I understand Heart Failure is when One or more valves aren't working.

When one has Heart Failure you cannot have Ablations.

You dont say what meds you are on.

Cheri JOY. Take care.

[Lainie2875]

The HF is recently diagnosed the last ablation was in Nov last year my heart is tired due to uncontrolled AF so not pumping properly, so I am told.Meds are Digoxin frusemide bisoprolol Eplerenone Ramipril Rivoraxaban.