Wife's AF became permanent in April 2023. An echo cardiogram was done about the same time which did not mention any concern over the ejection fraction. Wind on to Jan 2025 and following reporting an ongoing shortness of breath to the arythmia nurse a new echo cardiogram was done. This reported heart failure with an ejection fraction around 35-38%. Wife has now been discharged from 'arythmia' and handed over to 'heart failure'. Very nice HF nurse phoned same day, but have to wait till next month to attend clinic.
Has anyone else gone down this path, and how did they get on?
AF nurse has put wife on diuretics and a heart failure med (in addition to her AF meds) pending the clinic appointment.
Thanks.
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DevonHubby1
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I've been in permanent afib since late 2023 and at one time my EF measured around 30% before I had started treatment. It has improved and iI don't suffer with any symptoms like shortness of breath or water retention. It has improved with exercise and rate medication to around 50%. Heart failure always sounds serious but it not always that way
I personally don't suffer HF but I have a couple of friends that attend the same excercise classes as me and with exercise ,weight loss & the newest meds have experienced incredible improvement.
It must be very worrying for you, but l have heard lots on here say that this has been reversed when treatment is given. “Heart Failure” is a very frightening way to say that your heart is not quite pumping as it should.
I hope more come on here, and reply to you and put your mind at rest. Keep positive.
I had AF two years ago and the first ECHO showed EF of 25%. After being on medication for 4 months and after AF was under control EF improved to 45%. Now it is in normal range of 55/60%.
My understanding is that Heart failure caused by AF can be ‘reversed’ in the right circumstances. Best wishes to your wife.
BB Metapolol on 185 bph made me breathless on exertion. 24hr Heart Monitor showed it gave me pauses at night. My normal H/R 47avge bpm showed the same through 3 Heart Monitor Tests on different meds.
H/R Day Metopolol 186, Bisoprolol 156 and Diltiazem CCD 120mg 60s Day.
Why medical miss the 24hr Heart Monitor on different meds is beyond me. The role of the monitor gives a true report day and night.
I settled on control with Diltiazem. But it needed a private heart specialist!
2 ECHOs show a severe dilation of my Left Atrium. Damage as left on rapid H/Rate for 2 years 3 months. Shame on you Hospital Dr and Specialist. Just left me at 156 still uncontrolled.
Nebivolol 7.5mg for the AF plus anti coagulant. Been put on diuretic and dapagliflozin for heart failure. One saving grace was we did get to see son in Auckland last year so glass half full :-).
Mine went from being in the teens to over 50 with treatment (cardioversion and medication etc) and I went from not being able to walk 50m to back to taking the dog for 5 mile walks. I've recently gone back into AF, but much more controlled due to ongoing meds.
I can't speak highly enough of my HF nurse and cardiologist.
As my HF nurse told me, "HF is such an awful term but all it means is that your heart isn't pumping correctly." It covers all sorts of conditions and we all experience those conditions differently.
It certainly isn't the death sentence that Google would have you believe.
I have the same story as Wilsond. After 20 years of AF (started in my late 20s) my EF was 40%. I was devastated to hear heart failure in my 40s. I had 3 ablations and after the last one was successful my EF has risen to 60%. I know AF will return at some point but the fact that my heart has experienced this respite and I'm now out of HF category has made a massive difference.
Yes had covid/pneumonia easter2019 discharged on digoxin and other meds and ended up in persistent afib and not seen again until I had a covid and flu vaccine booster 2022 and ended up back in hospital. Lost alot of weight since then and diagnosed cardiomyopathy and put on max dose of entresto and eplerenone and ejection fraction went from 38% down to 28%. Come off entresto as side effects was numbness in hands on a night and chest palpations generally feeling horrible. Recently put on 5mg of ramapril instead hopefully increasing dose to 10mg soon. Cardiologist go to solution is is a defib which I've said no. Feel like he's not listening and unwilling to try other things 1st. Whilst under his care I've got worse rather than better
Sounds like you need a second opinion. Do it privately if you have to. I appreciate it will be a couple of hundred quid for 30 mins, but what price your health ? Start a new thread here on this forum retelling your story - including any other health conditions/co-morbitities - and where about's you are in the world/uk and I'm sure folks will wade in here with recommendations. Good luck with things from here - it sounds like you need a good turn in fortunes and this starts with good advice.
Thanks for replying. Sorry to hear your experience has not been as good as some of the other replies. It's been a long journey for us and on occasions we have similarly frustrated with the results. Whilst we hope our future will be similar to the other success stories we also accept their are mo silver bullets.
If your in UK and under NHS you do have the right to choose where your treated. If your unhappy with your cardiologist and travelling is an option consider asking for a different hospital.
We've also paid for private consultations on occasions and gave found them well worth the money.
Hi , I am having the same problems. Because of the atrial arrhythmias and unstable angina that require high doses of calcium channel blockers, adding in heart failure meds has been a disaster. Tried entresto and stopped after 7 months of misery as my heart failure got a lot worse , now only managing a tiny dose of candesartin and diuretics on a sliding scale . I am always so trilled that hear peoples journeys are so good , but I am now more at peace with my poor prognosis.
A very similar story to my situation. Had echocardiogram done after weeks of atrial tachycardia and unsurprisingly the results were pretty appalling. 29 percent EF and a few other issues. Have suffered with PAF for 30 years and beyond.
320mg daily dose of Sotolol put me back in NSR and despite a few breakthroughs of AF over the last 3 months, I've been pretty good and feel back to "normal".
However my cardiologist has referred me to the NHS HF clinic where I'm now in a 'virtual ward' with some technology provided at home with a Samsung tablet to send in twice daily my BP, a Kardia device for ECG, oxygen and respiratory monitor plus a set of scales for weight.
I've also been started on Ramipril, Dapagliflozin and Eplerenone and have a weekly blood test. This is on top of my daily dose of Sotolol, Atorvastatin and Rivaroxaban.
I'm now two and a half weeks into this regime and do I feel any different? No. So I'm in denial, although the plan was that I have to stay on this bunch of meds for 3 months then have another echocardiogram to see where I'm going with this.
In my case, I'm hoping that I can be lifted out of being flagged with HF but we'll see.
AF nurse put wife on Dapagliflozin a month ago but she's not noticed any difference. HR nurse on phone call did say they'd have to experiment with drugs till they found right set for wife.
I have heart failure, it's a scary term for you as it doesn't mean it's going to fail, it just means it's not working the way it should. I prefer the term impaired heart function.HF nurses are specialists in their field and can prescribe meds that the doctors can't. They also have meetings with the cardiologists.
The HF nurse will get your wife on the optimum level of meds to support her heart. Currently there is something called the Four Pillars, four meds that support the heart and that can improve it's function. Dapagliflozin is one of them. It excretes sugar through your urine . TBH it probably won't make you feel any different but it supports the heart
This may take a while to get the combination of meds right for your wife, months rather than weeks. Best wishes to you both
PS, Join Pumping Marvelous on FB, it's a private forum for people with HF,very supportive and lots of good information
yes my hubby ejection went quite quickly from 35% to 29%. He was put on digoxin and had a pacemaker inserted because he kept fainting as heart rate under 30. He hadn’t had an echo since so we don’t know what his ejection fraction is now but heart wise he seems ok
I was diagnosed with AFib in 2022 after experiencing increasing breathlessness. Put on Bisoprolol and edoxaban. 3 months later after no improvement given an echocardiogram which showed moderately severe heart failure an a EF of 32. My medication has changed a few times but due to low BP I have never been able to take high doses. I now also take Entresto and Dapagliflozin. I year ago my Echo was 42 but still have severe heart failure. I attended rehab and now exercise classes for those with poor mobility 3 times a week. Great improvement physically and mentally. Do not get obsessed with the EF my Cardiologist said it is more how you feel that is important. Wish you wife well this forum is great for us hearties!
Tachycardia Induced Cardiomyopathy (TIC) can cause your EF to fall below the recommended 55% to 70% due to the heart being in constant AF and under stress. This is not that common a condition. Once AF is under control heart function normally improves over time (months rather than weeks) and the Ejection Fraction will go back to normal. It's happened to me twice and each time my heart function improved within 6 months or so. Good luck
Thank you. Unfortunately wife us in permanent AF. Multiple attempts at cardioversions have all failed, so ablation has been ruled out as having little chance of working.
Cardiomyopathy has never appeared on any diagnosis we've seen but it's a question I have noted to ask HF nurse as it keeps coming up on travel insurance questions.
Good afternoon, My history is very similar to your wife's in that after having AF 2022 I had a one lead pacemaker fitted which improved my position physical in that I was able to return to golf.
However in 2024 I became breathless and quite fatigued, a visit to A&E confirmed heart failure. Still under the same Cardiologist was referred to The Heart Nurses who were superb. They altered my medication which improved the breathing and fatigue but after a Echocardiogram was told both valves were leaking, but not to the extent they required treatment.
The Cardiologist placed me on the list for an implantable CRT-P/D pacemaker in July 2024 and I have my pre op 11 Feb 2025. I am told it will make my heart pump together rather than currently in a random fashion. Told also it will make me feel much better.
We will see, but I am looking forward to having the procedure.
I have heart failure caused by dilated cardiomyopathy and since diagnosis in 2017 have always had an ejection fraction of around 25. What actually put me into AFib was catching metapneumovirus last year. I am on a bunch of drugs for both cardiomyopathy and AFib but apart from that am living a completely normal and very active life with lots of competitive sports and walking despite the low ejection fraction. I only see my cardiologist every 6 months. I’m sure your wife can be sorted out. Feel free to message me privately if your wife wants to ask about heart failure meds etc
Study the works and old radio programs of Dr. Joel Wallach on line and YouTube. He believes that Heart Failure can be completely reversed. He believes that Heart Failure is often a lack of B1 - Benfotiamine, and other changes in lifestyle.
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