Hi again
Sorry to keep posting but I am at my wits end.
I had echo on sat and heart is not functioning well at all.
Today I had a phone call from cardiac team telling me I have to go to heart failure clinic.
I am so scared and can’t stop crying, still af and still waiting for cv.
Can anyone give me any positive thoughts.
Many thanks
Debs
Hi, sorry to hear that you are having to go through this.
I was told I had heart failure when I had been in AF for several months.
After I had a cardioversion and my AF had been at bay for several months my heart was back to normal, no heart failure.
Heart failure is a horrible term for your heart not performing well, so it could be for many reasons and it does not mean that you will have it forever.
AF is horrible, and I remember well all the emotions when it seemed that every hospital appointment revealed something else not working right. But just take it a step at a time, you will get a DCV at some point in the not too distant future.
Things will get better, you will learn a lot about yourself, you will make lifestyle changes that will have a positive effect on your well being
All the best
Mike
Bless you Mikee this is exactly what I needed to here. I have been in af for 4 months now.
They frightened the life out of me.
I have got an appointment date at the clinic so will see what they have to say.
Hi Debs - I have AF and HF and was diagnosed in 2014. Basically with HF your heart is not quite functioning properly it probably just needs some medication to help it along.
When I was first diagnosed I was devastated as HF sounds serious. Well I am still here nearly 6 years later and my heart is stable now as far as HF is concerned.
I was allocated a HF nurse (I was in hospital when I was diagnosed for 12 days, more because of the AF) when I left hospital, she has been wonderful and very supportive, you will I am sure find the HF clinic very helpful. I am on Ramipril to help my heart pump more effectively and I have no problems with HF at the moment. When I first had it I had very bad fluid retention, was put of flurosemide daily and soon got this under contol. I now only take flurosemide occasionally, when I feel there is a little fluid building up.
My AF has affected my life much more than my HF, so stay calm, having HF does not mean your heart is about give up lol!!! What medications are you on at the moment.
Cassie
Hi Cassie
Thank you for replying, I am on 2.5 rampril and 5 bisopolol and rivoroxiban.
It just sounds so frightening.
Many thanks
Debs
Like a lot of things medical terms often over egg the pudding. Heart failure just measn that your heart is not capable of fulfilling all the demands put on it. Tis can be for lots fo reasons. AF oftne being one of them. Sort the AF and miost times the HF goes too so far too early to thing the worst. OK I know that is easy to say but please try.
Hi was on ramapril after a heart attack years ago, but made my tinitus worse so he gave me amias , then when i had AF he swapped to biso, then halved that cos pulse was too slow giving me palps, cardio swapped warfarin to rivoroxiban but had muscle spasms , one of the side affects so now back on warfarin
The worst part of a recent diagnosis is not knowing anything. HF and really what it means is a start. I was twelve years into permanent AF when one day I was told that my "ejection fraction," was very low - in the 30's. I had no idea what that was and when I did the slightest reading, I was worried sick. One doctor told me that if the ejection fraction dips into the 20's, I could just drop dead. Great. But, there are things that can be done to prevent it and education is at the top of the list. Yes, there are many lifestyle changes and being frightened is one of them. Just listen, ask questions, read this site religiously and you will learn to take much better care of yourself. I had a series of ablations in the past eighteen months that brought my ejection fraction back to normal range. Take care.
Thank you for your response Dawson I will read up but I have to get my head in the right place first otherwise I will only see negatives.
I don’t know any figures yet so I will make a list of questions to ask at the clinic.
Hi Deb, Mikee69 has sent you a good reply.
I went into heart failure after being in AF for barely 3 weeks , awaiting dccv. I truly thought I was dying as I could hardly move and GP couldn't find anything wrong 😕 I presented at AE with diagnosis of heart failure ...pulmonary oedema ..and was admitted for a few days until back to normal .I was told that this was a direct result of my AF history. This was 2008 and I have not had a recurrence although plenty of AF
I agree that it is so scary but do try not to worry too much . It sounds much worse than it actually is.
Let us know how you get on.
Best wishes
Being told you have heart failure is terrifying. However it's a term that often sounds much worse than it is. I have first dgree heart failure and it scared my when told but once I had spoken at length with the cardiologist i felt so much calmer. Af had been to cause.
Things are back to normal for me now my arrhythmia is under better control and the structure of my heart unaffected apparently. Please wait and see what the cardiologist says, it's perfectly normal to feel scared but they will help you to egg baby k on track. Best wishes. X
Oh Deb, that is a scary thing to be told but I think a lot of its impact is in the word ‘failure’. We translate that into not doing its job at all but I believe it really means not doing its job efficiently.
Of course you are concerned but your cardiologist will be able to suggest a treatment plan. There is one lady I know on this forum who has been diagnosed with HF and she is much more active with her very full life that I could hope to be with a ‘normal’ heart!
I wish you all the best with your treatment. x
Thank you Finvola
Just been a total shock.
Really not the sort of thing to be told over the phone.
Some how I have got to get my head in the right place and think positively
Hi Debs 
if it is any help to you I was told by a doctor ...
''Everyone has a degree of heart filure , hearts like any other part of the body wear out with age''
...so it is just a matter of degree, some fail earlier or a little more than others. The good news is there are excellent medications to help with heart failure.
So chin up
Oh bless you. It is scary isn't it. I have had HF and AF for three years now and am back to work full time after numerous little procedures. Yes, there are things I can't do now that I used to be able to but then I am 64 not 14 !
One of the scariest things is the terminology Heart Failure Nurse. My boss at work worries every time I have an appointment because it sounds so brutal. I just refer to her as Annie now.
Don't worry about posting here either. We are here to pass on our experiences in the hopes that they will help somebody else. Take care.
Hi Debs. Poor you. My middle name is “worry” so I can sympathise with you. But you can stop worrying!
Last year, before my ablation for atrial flutter, I was told that my heart was pumping less well. I’m glad that my doctor didn’t call it “failure” since this sounds somehow “terminal” rather than temporary. After the operation, however, although it took a good couple on months, all was slowly returning to normal. That said, I’ve never fully got my energy back but I put that down to my age (67).
Arrhythmias don’t always do this, I gather. but they can. The bottom of the heart - the ventricles - and the valves are stressed when the top is fluttering or fibrillating, madly. They cope as well as they can but - as in out cases - not well enough. The result is reduced efficiency. I felt washed out, was often light-headed and pretty awful all round. But getting the arrhythmia sorted allowed my heart to find its old strength again - well, almost.
I’m sure you’ll be fine, too - and should stop worrying! It’s a bad term to use and doctors should know better.
Steve
Hi ppiman thank you for your response.
It makes sense that af has meant my heart is not functioning as well as it should.
Hopefully if they can get me in rhythm things might improve.
It was a shock to be told over the phone out of the blue.
I need to try to keep positive but for me that’s not easy 🙄😱
Yes - positive thinking, eh? Those that can do it are so lucky. I have insomnia badly and I can’t tell you how frustrating it is to be told time after time how to cure it!
The best way out of worrying thoughts, I’ve found, is diversionary thinking. Force yourself to do something physically distracting and truly useful, or learn to recognise the very beginnings of negative inner conversations and immediately replace them with something else. Simply don’t allow them to start for them they grow like monsters in the dark.
Steve
Hi Deb, I know exactly how you feel. Had an MRI back in the summer and was in AF at the time and told I had heart failure. It’s so scary especially only being 31 and just having had my baby. Until you know more you just assume it’s a death sentence! But it’s not! After my ablation in August and after being in NSR for only a month my heart was completely back to normal! The heart is a muscle that will adapt to its circumstances, so if it’s in AF I guess it starts to wear out but when in NSR it begins to repair itself.
I am now back in AF sadly since the 6th Dec and I’m worried I am going back into heart failure. But I have another ablation booked in next month which can’t come soon enough! Had a taste of the good life being in NSR and I want to go back 😀
Hope you get sorted soon. Easy to say don’t worry but hopefully you can take some comfort in the responses you have had in this group.
Hi Ashlee thank you for replying. It seems bc I need to really push to get the cardioversion ASAP.
Good to hear that it improved when you were in NSR.
Wish you luck with your ablation
Many thanks
Hi Deb,
I agree with many replies above that 'heart failure' is an awful term, but Dawsonmackay above said much of what I was going to say and my experience parallels his.
Heart failure was explained to me as being when your Ejection Fraction (EF) is lower than 35%. For those with AF this is because the atria are not contracting in time and not squeezing enough blood into the ventricles to be pumped around the body.
I was in persistent AF for around 9 months and when they did an Echo they estimated my EF to be around 37-38%, i.e. bordering on HF. When I eventually got to the front of the queue for the cardioversion - which was successful thankfully - I felt like a new person and an MRI a few weeks later showed my EF to be back in the mid 50s which is pretty close to normal.
I have since had 2 more cardioversions (they are a breeze really, compared to an ablation for example).
When in AF I was also on Bisoprolol (2.5mg) and Ramipril (2.5) and Rivaroxaban too and these meds (not the RX obviously) helped bring my EF higher even when in AF, to the point where I could function pretty much normally, so long as I didn't stand up too fast or overexert myself.
This is my situation of course and everyone is different but I hope this gives you some comfort that there is light at the end of the tunnel. All of the best and hang in there!
Sean
Deb, as you can tell from all the excellent responses your post received, lots of people have been through exactly the same horrid scenario that you are currently faced with. 'Heart failure' is a brutal term and doesn't mean what you naturally assume. The good news is that, now that you've been diagnosed and have started treatment, you will be on the upward trend and much less likely to suffer further damage. Your heart can recover, and you can do your bit by being sensible with alcohol, caffeine and healthy eating, plus exercise. And don't allow anxiety to build, that doesn't help your blood pressure! Good luck, and report back here so others can benefit from your experience.
Thank you Peter, I am so grateful for all the positive responses received by this lovely group.
I intend to do everything possible to give myself some quality of life, I have already made lots of dietary changes as unfortunately I am also type 2. Fortunately I am not too overweight (prob 7lbs).
Will see what sort of treatment plan they come up with.
Many thanks
Hi Deb,
Sending you positive thoughts, they are obviously aware and they are dealing with it, trust in their expertise and try not to worry because trust me worrying only makes things feel far worse.
Elaine x
Hi Elaine
Thank you and yes, I know you are right
I am always anxious, so this fuels that but I am going to try and not overthink it.
Many thanks
Please be reassured that Heart Failure is another scary medical term. But if it's any reassurance my mum has had it for many years and is still going strong at 94!!! Good luck and try to relax and look at ways to improve your general health like foods and gentle exercise.
Hi Pender
The plan is to cardioversion and if that works fine but he wants me to have an ablation because of my age and he doesn’t want me being on drugs long term.
Thank you for the advice and stats that’s good to know
I don’t know why people are so afraid of ablation. It works wonders.
When you get cardioverted and get back into NSR, you should improve enormously. I hope that is what happens. AF will cause heart failure and fixing the AF, can help your heart recover. I hope that is what happens to you.
My friend has had "heart failure" since he was in his mid twenties, he's just retired at 76. When I had my ultrasonic heart scan, that measured valve function, ejection and a load of other stuff I don't remember, I was told it was "within normal range", but just a tiny shift in performance would technically be "heart failure", so the term covers a lot of ground, some of which isn't as serious as it sounds.
Thank you that’s good to hear.
I need to find out the facts from the clinic
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