I have a scary question that perhaps some can answer.... is there anyone with a low EF on diagnosis that is still kicking around more than 20 years? 😨😢
I only just had an echo last week following a siblings letter to be scanned following their hospital admission and consequent diagnosis.
I hadn't heard anything for a week so I believed everything was ok as I was told if it wasn't a cardiologist would ring me. So a week past and I rang GP surgery to enquire about some blood tests I had and in passing I asked had anything come back re my scan.
So just before the surgery closed my GP rang and read out parts of the report. Severely impaired function and LV severely dilated EF<35 but she went on to say there were no instructions on what to do next and advised I contact the cardiologist who had been on call's secretary.
I did ring and was told he hadn't read the report yet (even though marked urgent). Alas a few hours later secretary rang back to say he had just then emailed heart meds to start. Bisoprolol 2.5mg and Ramipril 2.5mg.
My first heart appointment is in 3 wks and so I'm just left hanging in limbo with the news of heart failure and having to source Dr Scary Google. I'm fleeting between lots of anger and feeling let down to upset and scared and back to anger. The anger is stopping me from completely falling apart. 😔
I'm only 45 and very scared about life expectancy.
Having all sorts of feelings relating to that... Why should I have to pay in to a state pension for instance if I may not live long enough to collect it at 68. Who will look after the people I care for. How many things I will miss etc
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Tearful
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I can only imagine how you are feeling at this moment your brain must be going well sounds like it is going a 100 miles an hour and as this is quite normal you have to try and take a step back and slow it down and not to think to far ahead just stay in the here and now difficult I know but that is where you are today not in 20 years and all the " What if's "
Some never know there is anything wrong with their hearts and do not get a chance try and think positive that now they do know you have they will be keeping a close eye on you and making sure you are here for years to come and will do all they can and what they can do now is so amazing stay positive
Please keep of Google it will petrify you even more , wait till you go to that appointment start writing the list of questions you want to ask and take it with you and see what they have to say they have your results and they know how to treat this best and they will
Hello I too have heart failure they really should rename it as your heart hasn’t failed it just isn’t as efficient as it should be . This can often be helped with medication so try not to worry I realise that’s easy to say . I live a full and happy life.
I too went through all the emotions you can think of please try not to worry. I was diagnosed in October 2022 so quite recent.
I too have an EF35 Dilated Left Ventricle and I was terrified. I’m on tablets and they change them regularly to make sure they are the right ones for you and the right strength. I’ve talked to people who have a lower EF than us and eventually with meds theirs have gone up. It just takes time.
It isn’t nice hanging around waiting to speak to the cardiologist.
Make a list of really good questions you can ask them so you are prepared when you get your appointment.
Good luck with everything let us know how you get on.
Aww Tearful so sorry to hear about how you were told they definitely could of handled it better even a letter would of been better. On the plus side atleast you have some medication to take before you see the cardiologist and see what there plan is for you take care and please keep us all updated on how you get on with your appointment in 3 weeks. ❤️
It is a shock to be told you have heart failure. As hanibil says, it is a very misleading term. I was told I had severe HF, e/f 20%, which panicked me. I am still here 4 years later, meds and a pacemaker have improved my condition to the point my cardiologist has discharged me.
20 year survivors might be thin on the ground, but the latest treatments are vastly improved, so yes ,it's a worry, but not as much as it might have been. You should be given advice on exercise and diet, which will help.
Hi Tearful, we all usually say welcome to the one club we'd rather not be a member of, but welcome. As BeKind-28 said, please stay away from Dr Google, it seems to only show the worst case scenario, which is of little or no help to us! Please try not to despair, the shock you are feeling is perfectly normal, as is the anger, outbursts of emotion, a good cry always helps, and do not feel you are letting anyone, especially yourself down....at all!
As mentioned on here loads of times HF or heart failure is the most dreadful term, and wildly inaccurate. Your heart is just not working as efficiently as it might at this time. I'm not medically trained, but there are loads of people on here that are where you are, some further forward yes but are leading really active full lives. Some have turned around their ejection fraction from really low up to 50% plus, which can/is considered 'normal'
I myself am at 38% after a large heart attack. I go to Parkrun most Saturdays, still attend a Heart Smart class (45mins) on Mondays, work full time, and guess what still go on regular cruises....my life is most definitely not over, and I'm definitely not written off.
So the good points:- you've been put immediately on the initial goto meds, before seeing the cardiologist, you've got 3 weeks head start! Yes this could/should have been handled better, but you're on your way, soon you'll have some answers and you build from there. Yes there will be wobbly moments & you'll be changing lifestyle choices, that is the journey. Please embrace the changes and use these to strengthen you, you can, and will emerge fitter and stronger. Good luck & please keep us all posted, we love success stories on here.
Don’t stress too much,after a cardiac arrest I left hospital with similar EF,taking the heart meds will help the heart to increase EF function,along with exercise which I did daily,starting with gentle short daily walks for a couple of weeks,then walking for longer,slowly increasing week by week.Was guided by cardiac physio through telephone chats,started to do BHF exercise from you tube,my EF was greatly increased to 48 and am no spring chicken lol.Have been told by cardiologist my life expectancy is normal and have been signed off,happy days,important to speak with your team and get best advice re exercise plan.Good luck,eat well,stress less,it,s onward and upward for you now.
Keep strong the meds should help a lot, hopefully you'll see your consultant or doctor who should!! Explain everything to you. It hopefully is better than you fear. Virtual hugs.
Exactly the same as me, diagnosed last year at 42. EF of 35, stopped smoking, drank less, took my meds and a year later my EF is up to 46 and feeling much better. Discharged by cardiologist. Don’t Google stuff!
Firstly, don't panic! secondly don't overthink EF. A "normal" EF is around 50 to 60%, there are a lot of HF people with an EF in the normal range (people with HFpEF), about half of people with HF have HFpEF, what is more important is your NYHA score. This is based on how you feel and what you can do. Yes, there are many people living many years with HF and indeed a person I know quite well through Facebook who has HF is running the Rome marathon this weekend.
You need to find out more about the condition and understand what is happening in your heart. I recommend that you join a specialised HF sufferers support group - Pumping Marvellous on Facebook. That charity produces lots of literature, written by practising clinicians but easily readable and understandable. It will help put your mind at rest, answer many of your questions and help you formulate your list of questions for when you see the cardiologist as well as helping you to understand her (or his) replies.
Hello Tearful. There are a lot of positive comments here so please don't think you're doomed because you're really not. Lots of virtual love and hugs. Jan xxxx
So sorry to hear of your worries, I agree it’s terrifying at first! I was diagnosed 2 years ago, also at the age of 45, that I had heart failure. At the time of my collapse my EF was just 15. My son was only 7 at the time so I completely understand your fears. It took about 1 year to fully titrate my meds to their max dose and my heart failure nurse said that it could take another year to see the full benefits. Im currently on 10 mg bisoprolol 97mg Entresto 25 mg Spironolactone and statins. And that’s just my heart medication, I have other underlying heath issues. I’m pleased to be able to say my EF has improved to a level just under 40 now and I’m much better than I was. I do get very tired and breathless quit easy but I no longer suffer from crippling panic attacks due to the anxiety of it all. I very rarely interact on this site but I thought I’d just let you know that you’re not on your own, don’t be afraid of resting when you need to and try not to google too much on low EF. Also make sure to keep chasing your doctors for results, help and support. Things will improve on your meds it just takes time, 2 years down the line and I’ve started exercising again 😊 good luck to you x
Hi,The meds are to take a bit of pressure off your heart while you wait for your appointment. I can't say don't worry as you will but you are in the system. You don't say if they found anything else on your echo like a leaky valve? There may be allsorts of explanations for the low ef but until you get a definate diagnosis it's so hard not to think about it all the time and Dr Google can makes things worse but we all do it. Try to stay positive - there are lots of treatment options out there now and science is advancing so quickly. Wishing these 3 weeks away for you. x
Hi Tearful. I completely understand you concerns. It is sooo frighteningly scary when you’re fist told you have heart failure/AF. I was diagnosed with AF in 2019 my EF was 15%. Yep, 15% very low and like you was scared to say the least. After going to Cardiac rehabilitation fitness classes (can’t recommend enough) and regular visits with the incredible and amazing Cardiac Nurses and Cardiac Consultants and getting my medication right (took a while). When I was signed off and referred back to my Dr’s surgery my EF was 55% which is I’m told normal!!
A horrid horrid term. Heart failure only means it's not as efficient as it should be. It's not suddenly going to fail. Medication can help a lot. My mum developed heart failure in her 20s after her pregnancy with me damaged her heart. Back then there was absolutely no treatment but she lived a completely normal life to almost 70.
Good day to. Just go on to NHS.... A to Z, then scroll down to Heart, you will then find answered t th The abreviations. Good luck.
Hello tearful. Your feelings are quite understandable. The trouble with the word heart failure is that it makes your mind think the worst. Basically heart failure is where the heart has lost its efficiency to pump the requirements for the body. Now iam no doctor or nurse so all I can say it try not to worry. I have done the usual googling and yes it can cause more anxiety. However the medication available today can improve heart failure. For me my problem is that the left side has an ef of 51 percent. But my right side has an ef of 21percent. My right side has a congenital problem. With my initial echo scan, my ef was 40 to 44 percent. Estimated. Then when I had an mri, my left side was 51 percent. Now there was a period of time between echo and mri where I had been on lisinopril. And possibly the ef had risen due to the medication.? Now this is where I do differ, I don't have heart failure. Or the classic symptoms of heart failure. I just have an inefficient right side which does not pump enough volume out of the right side, to the lungs due to my congenital issue of the tricuspid valve and small right ventrical. God must have made me on a Friday. But I will be interested to see my next report from my cardiologist as I had another echo and will see what they found. It is hard and it is one journey I don't wish on anyone. But for me I try to take in the positives. My cardiologist does not want to see me again for a year and she must have seen a basic report from echo and ecg on that same day. But we all have the dark days. Iam lucky ( well depends on how I look at the word lucky. ) iam being looked after by the congenital heart team. Which will mean I will be checked out regularly and I am able to talk to the nurses within that department. Keep strong. We do live in a very fast moving field of medication and learning. Also phone the British heart foundation nurses they have the ability to explain things and help.
OK, I’m somewhat older than you (I’m 75). Last July, my wife was opening her birthday presents and cardx when I collapsed. I’d been unwell for some weeks but, as a typical man I decided to ‘tough it out’. I remember little about that morning though, I do recall the ambulance was on ‘blues and twos’. Contrary to some of the BBC stories, I was straight into ‘Emergency’. Gradually it emerged that I had HF with an EF of 25%. I spent nine days in a cardiac ward. Even at my age, the treatment was aimed at keeping me alive. The local hospital has a Heart Failure Team funded by BHF and I have a nurse allocated to me.
Yes, I’ve had lots of changes in medication since then but it’s all been aimed at keeping me going. There are so many new drugs being used to support me. Every change in drug type or dosage is accompanied by evaluation (blood tests, ECGs etc). I’m currently waiting for an Echo CG, to assess whether the dosage of a drug called Entresto is correct or needs to be increased. In the meantime, I’m attending a gym (Run by a local heart health charity.) I’m full of confidence that they’ll keep me going at least a few more years. Maybe it won’t be twenty more (At 75, I wouldn't expect that.) but at least they’ll be trying and, there’ll be advances in treatments. Be aware Tearful that one of the features of the condition is anxiety and depression. Learn to overcome it! You must not see yourself ‘suffering’ from HF. Rather you must set your mind to ‘LIVING’ with it!
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You are right we have to learn to live with it. What ever condition you have, it is new way of living
Hello Tearful. You are amongst many people with the same EF figures and worse who are still here and have been here for many years and functioning normally, we just have a little help from some medication and a bit of surgery. Listen and heed BeKind 28 they are one of the wisest, thoughtful and real people on here. Take a deep breath, read some, but limit yourself until you’ve had your cardio appointment. Then read and ask questions of your consultant, GP and us. But most of all take a step away and don’t worry. Lean on us whenever you need that lift 🙂
I can sympathise with how you are feeling Tearful I too have recently been diagnosed with permanent AF and HF following results of an Echo (which I had to wait almost 6 months for). Luckily the GP did prescribe Bisoprolol and Edoxaban while on the waiting list!
GP has now referred me to Cardiology and I have just received a letter stating that the wait for a first appointment will be approx 20 weeks and the same wait for any further treatment required. So by the time I get to cardiology it will be approx a year since I visited the GP!
I too received results over the phone and in a panic resorted to Dr Google who I now keep well away from! I have learnt more from the posts and the helpful people on this group and am now trying to think positive.
Take care and let us know how your appointment goes.
Hello. Its a huge shock when you get information like this and it takes time to get the details you need then to your head around. In the meantime all sorts of feelings are entirely normal. It also takes time for the meds you've been prescribed to help your heart.
My husband was admitted to hospital in March 2017 and found his EF was 10-15%. ( Normal is 55% -60%or so).He has an enlarged left ventricle due to Dilated Cardiomyopathy. 3 months on Betablockers, ACE inhibitor and a diuretic and his EF was 25%. Fortunately his arteries are crystal clear as he’s always needed a low fat diet. He needed surgery to replace his aortic valve in 2018 and now his EF is …normal, 60%. In addition to his meds he takes Ubiquinol (a food supplement) which helps the heart muscle. His cardiologist is happy for him to do so.
”Dr Google” may have useful information from websites like BHF, Cardiomyopathy UK, NHS, NICE and respected university hospitals worldwide but it also has a load of total rubbish. Many clinical studies and articles it unearths are old, out-of-date, use a patient group who aren’t like you, aren’t written by qualified medical professionals etc and sometimes plain wrong. So, be very careful about what you read and take note of.
My husband keeps a daily diary, recording his meds, BP (daily at first), energy levels, how he’s feeling etc and questions for the cardiologist. It gives an objective record and the Dr seems to like it. We go to appointments together and I take notes because what they say goes flying out of your head as soon as you leave the room!
Have hope and don't be afraid to ask for help, whether thats on here, your GP, cardiologist, BHF nurse helpline etc.
Sorry to hear your news but don’t panic. It is important to keep hassling the cardiologist, GP and other health providers as unfortunately those who shout loudest seem to get treated while if you just wait nothing happens.
Also be aware that Ramipril can give you a nasty cough and it doesn’t go away until you change to a different medication. I didn’t appreciate this and suffered for months.
Hi. Like someone said in a post, it’s not necessarily your ef, it’s how you feel. Some people with lower EFs do well for many years if not decades, from what I’ve read. Then they have more than one option to consider. There are so many advancements in meds and devices. Transplant, LVADs, new drugs like Entresto come to mind. Speaking of Google, there is literature on many of these options from reputable major hospitals and device manufacturers like Abbott and Medtronic. Do some research and it may help ease your mind somewhat. Wish you well.
nearly fell of my chair when told Ef was 20/25%, medics can be very blunt. Takes time to come to terms with such a diagnosis. Meds have worked for me and after 12 months ef now 39%. Symptoms largely gone. Good luck
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