heart failure

[lambretta1968]

hi, I've just came out of my appointment with the cardiac nurse. I had a cardioversion about 3 weeks ago for Atrial flutter- it didn't work . when I had my heart scan it picked up moderate to severe hf , not sure if I'm going to get another cardioversion or a ablation. the nurse said my hf can be treated with medication but never cured .😥 has anyone been or going through a similar thing ? thanks Ali

[jeanjeannie50]

Hi Ali

That must have been a horrible thing to hear about your heart failure. I don't have it as far as I know but just wanted you to know that I care about you being given that news. I do know that a lot of people live long lives with HF alongside taking prescribed medication.

Heart failure is not really a good description of what the problem is, a better description being that your heart isn't pumping quite as it should. It doesn't have to get worse and you're likely to live to a good old age. So many people think when they're told they have heart failure that the organ that keeps them alive is going to get worse and kill them - not true. I've even heard of some people's hearts improving when taking the recommended medication.

You may find more help by posting on the British Heart Foundation Forum that's also on Health Unlocked. You can find it by entering the above into the search box at the top left of this page.

Wishing you well.

Jean

Here's the link:

healthunlocked.com/search/p...

[lambretta1968 in reply to jeanjeannie50]

thank you so much Jean , it means so much to hear that. x

[Karendeena in reply to lambretta1968]

My mum has heart failure and AF and she is 96!!

[Qualipop in reply to lambretta1968]

My mum developed heart failure i n her 20s when pregnant with me. ( She had eclampsia which damaged her heart). She never had any treatment; there just wasn't any back in the 1940s or even when she got older. She was simply told she could never have a general anaesthetic so she had a hip replacement when she was 67 by epidural. It only ever affected her when walking up gentle inclines and she got breathless. After a life of smoking woodbines and walking miles with her dogs, she died at 71. Treatment is now so much better and in many cases heart function can be improved with mediation. Do join the BHF forum, you will get lots of advice.

[Buffafly]

Hi, what a horrible shock for you, but I wouldn’t take the opinion of a nurse no matter how well experienced. The HF is surely influenced by the persistent flutter and if that can be stopped by another cardioversion or an ablation (high success rate for flutter) then I am sure you should feel better even with an underlying pump problem. Best wishes ❤️‍🩹

[lambretta1968 in reply to Buffafly]

thank you for your advice , hope your well

[Desanthony]

Heart Failure is not a very good way to describe what is actually happening - it just means that your heart is not working quite as it should but can be improved with medication and possibly some interventions. I would wait until your appointment with your EP and not always take the word of a nurse no odds how well trained over that of my EP.

[lambretta1968 in reply to Desanthony]

thank you , it's sometimes hard trying to be positive. I appreciate your advice

[Buffafly]

I have just been reading a post ‘Back in permanent AF’ by Bigredhear which has some information near the end which might be helpful to you. To sum up, this person had HF diagnosed in 2019 but after successful treatment for AF has recovered health and fitness. I realise that there are causes of HF which are not reversible but it does give hope in some circumstances.

[opal11uk]

I have to concur with Jeanie, she has it spot on........I was diagnosed with HR just over a year ago and I am still going, meds adjusted and monitored, I also have a neighbour with the same diagnosis over 5 years ago so acknowledge it, take good care of yourself and move on hugggs

[AmandaLouise77]

I was diagnosed with AF in January 2024, echo showed severe mitral regurgitation and an ejection fraction of 28%, meaning stage 2 heart failure. I was given a cocktail of 5 drugs whilst waiting for an urgent ablation which I had in March. In May I had another echo, mild MR and EF up to 50%.I feel even fitter now and would expect that my EF is even better.

I'm still a heart failure patient, get offered extra vaccinations etc, I'm 63 and normally fit and well, a little overweight but always on the go. I'm now walking 12-14000 steps a day, between 5 and 6 miles. I told the nurse at my HF review that I felt like a fraud being there. Drugs now reduced to just Edoxaban and 1.25mg Bisoprolol and 2mg candersartan. I was on digoxin and dapaglifozin as well.

I have found the pumping marvelous website and FB page useful.

[lambretta1968 in reply to AmandaLouise77]

thank you Amanda , fingers crossed 🤞 just want my heart working better

[Larneybuds]

Good morning...as has been said by others in answering, heart failure means that your heart basically isn't working at full capacity and needs a bit of help to do it's job with medication. Diet and exercise plus a few other lifestyle changes play a major part too Many on the forum will say it's an inappropriate title and being told you have heart failure almost immediately strikes fear. Ive heard it suggested by others that it should be called heart inefficiency which seems a better suited title. Pumping Marvellous is a great information site along with BHF. I'm sure reading answers to your post will leave you feeling a bit less scared and will show that a lot of us can lead reasonably normal lives with not too many symptoms. Obviously like all things that are diagnosed, it can affect people in many different ways but follow any guidance you get from the cardiac nurse, report any changes, make a few lifestyle adjustments and try not to let it take over your thinking. All the best and I hope you feel more inspired by your replies. Take care xx

[lambretta1968 in reply to Larneybuds]

thank you so much , overthinking is a problem for me xx

[Larneybuds in reply to lambretta1968]

Overthinking is the problem for most of us initially...it seems a scary prospect but as long as you know the do's and dont's and make any adjustments you need to, I'm sure like many of us you will very soon stop overthinking and realise that it's quite manageable . Take care and hope you feel encouraged by some of the lovely replies you've had xx

[Kernowafibber]

Hi

I was admitted last November following a trip to A&E due to returning persistent AF. I am a similar age to you with a 2 year old son.

I was devastated to be told quite matter of factly that I had heart failure!

Although I feel better now than I did, I am not back to my previous levels of ability. They have been unable to get a clear enough echo to see whether my EF has improved. I take Edoxaban, Bisoprolol, Amiodarone and Valsartan. I am on the waiting list for ablation number 3.

I would agree with some of the other comments that 'heart failure' is a very poor description as it implies impending doom! There is so much that the NHS is good at but compassionate communication is, in my experience, not their forte!

View it as 'impairment' rather than 'failure' and try and get on with life. Not always easy I know.

[Gowers in reply to Kernowafibber]

I'm on 200mg Amiodarone- didn't know you could take Bisoporal with it. I couldn't tolerate even v low dose of Bisoporal. What doseage do you take of them & do you have to take them together?

[Kernowafibber in reply to Gowers]

I take 5mg of Bisoporal with the Edoxaban, and Amiodarone in the morning.

[lambretta1968 in reply to Kernowafibber]

I hope you get good news 🙏 ❤️

[Lovedogs1]

So sorry to hear your news, I had the same diagnosis in 2022. It came as a real shock, because I thought I was dying. Since the I have had CRT-P pacemaker, and a cocktail of medications. At my last check up my heart had actually improved, my EF is now 55 risen from 40. Now I am living a normal life, ok there are a few things I can’t do now, but that’s a small price to pay. So don’t despair, things can get better.

[lambretta1968 in reply to Lovedogs1]

thank you for your advice 🙏

[JOY2THEWORLD49]

Hi

Heart structure abnormality prevents us from cardioversion, ablation (which scars the heart) or anti-arrhymia med like flec..

But rapid heart rate can be controlled with CCB Diltiazem which acts the same as flec... Not as risky as flec.. which can make your rhymn worse.

cherio JOY. 75. (NZ)

[Swimmerb]

Iwas diagnosed with heart failure in February. A complete shock. My grandson , a Doctor said Nana heart failure is a dreadful description , heart insufficiency is much better.

I just had a weekend in hospital due to rising BP (cause unknown) but I am now back under the heart failure clinic who are wonderful. More tablets and they explained what was on my discharge form to me which was more than the hospital did. The cardiac nurse Said "listen to your body, it will tell you want you can and can't do".I cold water swim and walk as much as I can. I Try not to worry too much.

[lambretta1968 in reply to Swimmerb]

good advice thank you 😊

[Ppiman]

What this means is that your "EF" (the heart's ejection fraction) is significantly lower than the normal of 50+%. When I had atrial flutter in 2019 with long-term persistent high heart rate, this happened to me. It was never referred to as HF, but I ma sure that is what it was; and it has returned to normal following my ablation that year and has stayed normal since then according to a recent MRI scan.

The causes of HF vary a great deal. HF resulting from reversible heart issues such as the above will often reverse; HF that results from a heart that has been damaged by such things as ischaemia and myopathy cannot.

I think you will find that yours is like mine was. It is, as Jean says, a blanket term and unfortunate as it is entirely fear inducing.

It seems no one fully understands the actual root cause of heart failure, and why some people do not recover as well as others, and I suspect it is likely genetic. I gather that modern treatments are transformative, however, making much of the information from previous studies rather inapplicable.

My friend was diagnosed with COPD and HF las year with an EF of 40%. Now his EF is also normal. Does this mean his HF has been cured? I don't know, but he has been!

Steve

[ozziebob]

You might find this offer from BHF helpful ...

Heart Helpline - speak with a cardiac nurse

Our experienced nurses are here to help answer your questions or concerns about heart and circulatory diseases.

Call 0808 802 1234 (freephone).

Our Helpline is open weekdays 9am to 5pm*.

* excluding bank holidays

[lambretta1968 in reply to ozziebob]

thank you

[Golfer60UK]

Good morning, I have had a pacemaker fitted for a couple of years after a period of AF. and have had no real problem.

Tuesday I did not feel well and went to A&E, after blood tests and an ECG I was told I had heart failure. As with many others its a bad definition, the pumping of blood around the body is not as efficient as it should be. Medication, Pacemaker or a combination can control this problem for many years.

Am at an early stage of HF with shortness of breath and swelling of ankles and calves, given a water tablet to reduce fluid build up, which should help with both breathless and swelling

Best of luck

Dave J

[lambretta1968 in reply to Golfer60UK]

good luck to you too Dave 🙂

[Cabinessence]

It's a terrible word and yes I was diagnosed with it last year. It was caused because the lower ventricles didn't like the turmoil that was happening above them in the atria with all the chaotic rhythms being produced, so came out in sympathy. As soon as I went on Amiodarone the beats normalised and I came out of heart failure. I had my ablation a month later (a year ago last week) and came off the Amiodarone in October and I'm still in NSR. I'm not listening to folk who tell me it's just a matter of time before the dreaded AFib returns. Don't give up hope and in the meantime just try as best as possible to ignore it. If you let it make you fret that's when things become worse. Hard not to I know, but try.

[lambretta1968 in reply to Cabinessence]

thank you , hope your still well

[frazeej]

In October 2023 I was diagnosed with HF with reduced ejection fraction of 15%. Since that time, I have been on HF meds (furosemide, Entresto and Farxiga), in addition to my usual AF drugs. I also lost 44lb (20% of my original body weight). A recent ECHO showed EF at 35-40%. My cardio guy and GP are happy. HF is a very sobering diagnosis, but not necessarily a death sentence.

JimF

[lambretta1968 in reply to frazeej]

thank you jim , everyone's advice definitely helps 👍

[Dudtbin]

i too was Tod my heart wasn’t functioning properly, 2 years of medication later i had a stress mri and am told all good now and normal function.

[DawnTX]

about a year and a half ago. I had a cardioversion that worked for 3 1/2 weeks. They did another one and had me scheduled to go on a different medication but unfortunately it did not work so everything was canceled. My EP does not believe in a lot of ablations and said I already have too much scar tissue. So I got a pacemaker and an AV node ablation. FYI, not the same kind as the others. You only need to be a millimeter off and your ablation will not work. He believes this is why so many people do not get relief no matter how many ablations they have.

I got my pacemaker and AV node ablation, which I believe must be done together. I have seen people not wanting the AV node part to me getting a pacemaker is a waste of time without it because you are going to have a very confused heart.

the first year while you heal, you have your ups and downs, but when it came to my constant tachycardia and all the other problems I had they were gone within days. It is really more about being educated about what a pacemaker does and does not do. You also will still feel, a flutter or a fib the difference will be it can no longer hurt your heart.

I have heart failure, and it was moving along at a fast pace. My ejection rate was fortyish just so you know since the fitting of my pacemaker my ejection rate is now in the 70s, which means my heart failure has improved. That is because my heart was able to get to where it should be and also get rest. If he had not done all of this for me, my odds of blasting very long we’re not good. My heart failure was moving at a fast pace because I had had tachycardia from day one and nothing kept it at bay for very long , I was usually around 180 there were times I hit 300 in the OR

Talk to your doctor. there is no one size fits all for us so a pacemaker may not be the right thing for you but talk to him and if he mentioned it listen to him. What it will do is give your heart a rest If it needs it. I actually have an extremely complicated situation with a unique pacemaker made just for me believe it or not with a specialty called HIS stop it pace bundling. And then improvised dial pacemaker with three leads because there was no pacemaker for my issues both upper and lower chambers have problems in me

Do not give up and don’t let it scare you because they are working on new things every day for us. Finally, a fib is getting recognized as a serious problem that needs to be addressed. Right now, the fixes are more like Band-Aids. There are no cures. I will tell you except when I’ve done something to trigger a flutter. I feel normal and pretty much forget. I have a pacemaker now. Part of that is learning to get out of your head about it. It seems to me many of us spend much too much time, thinking about a fib, etc., so that every little beat of our heart puts us into a panic. I learned too, take my medicine and try to do what I was told, and my doctor has been very big on the fact that my anxiety needs to be addressed and reminded me it’s not always the heart that we have many other body parts that can act up but the heart seems to always get blamed once you know you have a problem with it

I just went through this in the past week myself. I have had what I considered flutter almost constantly for the last week and a half. The device clinic did two transmissions on me and they’re actually is no record of anything. My pacemaker is monitored 24 seven and they can take a transmission or I can send one from any place at any time. Usually they do it quarterly now, but if I have a question, we just do it. It’s a wonderful thing. I don’t have to go anywhere. It appears I started at the trigger a couple of weeks ago with our extremely hot weather triple digits added a glass of sangria to that and two large a meal. yes I definitely triggered that day and then I came to realize the other day that’s when I started feeling bad. My problem was not my pacemaker, but with everything going on plus we had two serious storms. The second one was a hurricane in which we had no power which means no air conditioning for our triple digit weather. The heat does not usually bother me like it does other people, but it still bothers my body. I do not perspire. This is what triggered everything yesterday. It finally started slowing down. I’ve had one or two episodes of flutter which is a lot better than having constant.

also as I said, with the pacemaker and AV node done, my heart is no longer damaged by flutter or a fib

I am in Texas in the USA. We have had some fairly bad weather as of late. A month before the hurricane we had a storm just as bad. The storms here also can spin off tornadoes. I am new to Texas tornadoes scare the heck out of me.

there is no set answer or set procedure for any of us. We are all different just like with meds. There is no one size fits all. I am on Metropol and Xarelto for life. My metoprolol was increased a few months ago. I am also on a statin which was just changed. Anyone on a statin may realize the body pain that tends to come with it. Finally I have a doctor that explained they are not one size fits all either and many of them work on the fat in your body, which women have more of naturally. The statin I have been on for years is one of those so he changed it for me. Too early to tell, but hopefully I will have less body ache. None of my doctors want me to go without a statin.

best of luck keep your mind open and don’t let your doctor fall into a pattern of doing the same things over and over again because there is more out there for you most likely like there was for me