hello. I went for an echocardiogram yesterday after ECG picked up a left bundle branch block… my flow was very low- doctor said around 30%
I have no symptoms of heart failure, no chest pain, swelling, breathlessness or palpitations- doctor even said it was strange given my results. I have felt over the last 6 months that I have slightly less stamina when walking up steep hills or doing an intense workout, having to stop for breaks etc
the term heart failure terrified me, I’m only 41! Have been put on medication which dr said should restore my heart back to normal but all info online says I’ll be dead in 10 years! I’m so confused and scared.. can anyone shed any light?
can the medication therapy keep me alive to live a full life?
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I’ve spoke to my dad tonight and he’s had allsorts of heart issues and he had them for years - even an ablasion and open heart surgery and I am proud to say my dad is turning 70 next year 🤞🙏i am your age and recently been diagnosed so I really understand what doctor google does to you - read some of my posts
I have they say porofomol AFiB and I hve these awful ectopic beats - I wanted them to explore of something it’s causing the episodes like hormones etc but they’ve not. They said they will try two mediations and if that don’t work I can opt for the ablation.
Easier said than done but please try not to worry! Everyone on this forum has been where you are now!
I got diagnosed with Atrial Fibrillation and Heart Failure in November with the same EF value as you 30%. I'm older at 47 but not by much😃. I was prescribed a number of medications (see my bio).
Your right it's terrifying and scary but there are a lot of people on here with positive stories and great advice. I'm very much at the beginning like yourself.
I'll quote what cabgpatch replied to on one of my posts with which I always try to remember:
Please don't confuse life changing with life ending. They are not the same and although your diagnosis could be better, it is inherently survivable.
As well as taking medication, I've lost weight and have stopped drinking alcohol and caffeine. Apart from the AF and HF and feel good just for those simple life changes.
The websites mentioned in earlier posts are worth a visit, I though pumping marvellous was a really good resources and put my mind at rest.
When things got/get too much I ring the BHF cardiac nurses, they are available Mon-Fri 0900-1700. They are very knowledgeable and will be able to put your mind at rest.
It’s a difficult time but I already feel better from ready through this forum and seeing that the heart can revert and be remodelled to function better and I hope to be able to write that post in the coming months.
It’s hard to get news around, especially seen as I don’t have any of the symptoms really, still walking my dog 5k plus miles a day and feel fine, can run upstairs and no pains or breathing issues.
How are you doing? Have you noticed any improvement since starting your meds?
That’s great, I’d take 2% So the aim is 40% is it! Any idea how long it takes for it to improve?
I was a very heavy drinker before they found my LBBB on 15th Nov, it was getting ridiculous and I wonder if it has contributed to the ‘reduced function’ in my heart! I’ve lost two stone as well from not drinking and cutting out a lot of diary and red meats!
Your right in your first message this forum is so helpful, am starting to feel much more optimistic about returning my heart to normal
I’m sure you’ll get there, it hasn’t been very long for you has it? Since it was diagnosed. It’s great you’ve had the Ablation, it just might take a few weeks/months for your heart to recover and get stronger from the meds.
I’m on Forxiga, Ramipril and Bisoprolol… they make me feel weird, and only on day 3 of taking them! If anything i felt better without taking them but will wait to talk to cardiologist.
Hello, I’m sorry to hear you have heart failure. Have they tested your Troponin T and NT-proBNP? Do they know what has caused your condition? My best wishes to you.
No I don’t know the cause yet, have an MRI and CT scan in new year! Just hoping the meds can work as haven’t got any symptoms and feel physically fine so going to trust the process I am on and try and stay positive
playing EF top trumps, mine was 15% the day after my first HA and with all the meds they can safely get in me and the loving care of the NHS, my EF has improved to … 17%.
I’ve had arrhythmia, afib and everything in between, had two cardioversions and four other heart ‘incidents’.
Spent, literally, months in a hospital bed.
However, I’m here to talk about it and the ‘10 years to live’ bazookas is - as someone much wiser than me said, I can’t recall who - the 10 years is without any medical intervention or life-changing behaviours, giving up the fags and serious boozing for instance.
I had my first one at 61, two more before I was 62 and just recently had another two.
Ah, that fateful day of 27th October 2022 at 00:30 was the first HA and I got the results of the Ultrasound and chest x-rays on drs rounds next morning.
I got two stents as well, but they were too late to save the LAD and my left lung from serious damage.
I’ve seen a lot of A&E and a few of the nursing staff at my local hospital in Croydon know me on sight.
It’s just a case of not stressing too much. I do what I can to be healthy, take my meds (12/day), do what the HF nurses and the cardiologist tell me to do.
After that, well, it’s out of my hands…
Oh and I’ve done lot of crying and feeling sorry for myself, worrying myself to a hospital bed. I think many here have.
I was diagnosed with HF and an EF of 30% at the tender age of 70. I’ve since had 2xPCI, a CABG and AVR. I’m still here at 72, I now run 5k every Saturday morning and at least another 3k once a week. I do a gym session once a week. My EF is now 60%+.
I too was upset when my GP used the term heart failure. In fact the first time anyone used it was AFTER my surgery and it still niggles as I am fitter than I have been for nearly 20 years.
I was told that my valve, a bovine one, should last about 20 years, I wonder, at times, if the rest of me will last that long. By the way I spent 5 weeks in Royal Papworth once I was diagnosed. Do you think they’d have spent all that time and money on me if life expectancy wasn’t good?
At 41 I think you have very many years ahead of you, make the most of every single one, I know I would.
I went through exactly what you are experiencing about 4 weeks ago ,even read something on Google that said I should make sure my will was up to dateHave now been on Forxiga for a couple of weeks and feel fine
I know my heart failure was brought on by stress but looking back at previous blood tests and the two most recent ones I have had numbers have changed every time
I’ve been living with it for more than 21 yrs. I was around your age when I was first diagnosed. I’ve had around 4 ablations and 2 devices fitted. The first was added because I had an AVnode ablation. The second was because of a battery change and they added a defibrillator. I’m having another ablation early next year, if I’m still around.
Mine is caused because of too much electricity but luckily it’s only in one area and not all over.
My breathing is awful now. I started a new trial drug which only improved it minimal so my HF cardiologist arranged a 24 hr holter monitor which showed up arrhythmia in my lower chamber. I spoke to the arrhythmia doctor and they suggest an ablation because it’s preventing my device from working and my heart from pumping. I should have it by March. This cold weather is as bad as the hot weather when I’m trying to walk.
Sorry to hear it’s been difficult. Sounds like there is a good chance the new treatment should help! Roll on March, I really hope it works well for you
Hi … I was diagnosed with LBBB in 2018 following an ECG. Had an echocardiogram, a cardiac MRI, Cardiac CT scan and a angiogram, all that they showed was a <30% narrowing of my LAD artery, so in essence my heart was fine but my electrics were out of sync.
Six years later and I’m about to undergo lots of scans again as a recent echo showed my left ventricle was not working well (regional wall abnormality and EF of 46%)
BUT … I still have very few symptoms and live a full and active life and I’m 20 years older than you 😘 LBBB is not a death sentence in anyway at all, yes you may (and I say may as it’s not a foregone conclusion) have an underlying cause for which you’ll have scans to establish. Here’s the important thing though, our hearts are very adaptive and medicinal intervention can help them in so many ways. I’m worried that things have changed for me, but my cardiologist was very reassuring and the worst case scenario for me would be a pacemaker, so still not a death sentence at all.
The good news is that you are now aware that you need to look after your heart; a healthy diet, no smoking, watch your blood pressure, your cholesterol levels and blood sugar levels. Might be a few lifestyle adjustments, but will in no way impact what you want to do in life.
Please, please stay away from Dr Google (a hard lesson I have had to learn!) reach out on this forum as you need too (everyone here is super lovely and reassuring) stick to the BHF and NHS websites and advice from your GP and cardiologist. Look after your heart … and your mental health too, doctors and cardiologists are very well aware of heart issues affecting our mental heath!
Sorry for such a long reply, but wanted to try and reassure you having been there myself six years ago. Yes you are scared, of course you are; but big deep breaths, know that you’ll be looked after and it’s more than likely you’ll have many, many more years to enjoy life.
Take care of you, be kind to yourself and sending lots of positive vibes your way 💕 x
Thank you so much, means so much to get responses like this! I’m already feeling so much better and am hopeful that the medication will help me to live a full and happy life as I have until now! I’m am still able to do all the things I did before this diagnosis, walking my dog 5k a day… husband and I are going ice skating tonight, I don’t really feel any different, that’s why it’s so worrying! Imagine if it hadn’t been found or I hadn’t gone to the doctors for the ECG!
I feel like the meds are causing some heart flutters, not had anything until I started taking them so will chat to the cardiologist when I see them on the 30th dec.
Thanks so much again, really appreciated your support x
I was 52 when diagnosed with an EF of 10-15%,dialated cardiomyopathy and LBBB. I wasnt improving on meds alone, so my HF specialist advised a CRT-D pacemaker to fix the LBBB so my heart would beat in sync. It is now 10 years later and I am doing well with an EF of 45%, but it was at 55% for most of 9 years. If the meds dont work, there are other options, take care.
Thank you for responding, it’s so good to hear that you are doing well 10 years after you found your heart problems, it’s very encouraging for someone who is the beginning of this. I’m feeling slightly optimistic about it now, where as day before yesterday felt like I was going to pop off very soon. Maybe I’m underestimating the advancements in what treatments are available now thanks again x
Please be very cautious about statistics - they are difficult to interpret correctly. What you read is highly unlikely to have meant that you will die of heart failure in the next ten years
Any health condition can affect how long you are likely to live but also lots of things you do every day affect how long you might live. If you really thought about how your risk levels change every time you go anywhere in a car you would never get in a car again!
So either find out exactly what the statistics really mean or focus on enjoying your life as it is - worrying won't help🌺🙂
The Doctor said your heart will become normal ...what he meant was the Ejection flow can be brought back to normal with medication..mine did..from 37 to 66..but the LBBB is probably permanent..however I also never had any symptoms of heart disease..just discovered by chance...and you can live a normal life with normal life expectancy...I was given Entresto and Bisoprolol..but others have different meds...best of luck...it is scary news to get...heart failure they said..now I justvtake my meds in mimimal dosages and do not notice much...I do get a little cough...and that can be a side effect of both of these meds..
Yes the doctor meant my EF would return to normal with the medication.
It’s good to hear that your EF went back to the normal range, and your living a normal life, the words heart failure really do terrify me as it sounds so final but from reading a lot of posts and getting so many lovely responses with positive stories has made this a lot more bearable and dare I say I feel optimistic!
I haven’t been prescribed Entresto but have seen it mentioned a lot! I have foxriga, ramipril and bisoprolol.
The Cardiologist could find no reason for the damage to heart...and yes I was terrified when I heard those words...but since I have no symptoms I can live with taking 2 small pills day..for the time being...I am satisfied with my results..and wish that you also have success and your EF returns to normal..mine took about 18 months
My mum was diagnosed with heart failure in her 20s after she gave birth to me. She had toxaemia which damaged her heart. This was way back in the late 1940s. The only thing she was told was that she couldn't ever have a general anaesthetic. There was no treatment back then so she just got on with life; got pregnant again, lost the baby but had toxaemia again. She lived a normal life, smoked woodbines, walked her dogs. In her 60s she needed a hip replacement which they did by epidural. She never ever had any treatment and died just short of 70 after 3 heart attacks
Scary stuff this heart thingy! Just to reiterate, however, heart failure is a generic term which just means that your heart isn't working as well as normal. What it doesn't mean is that it is inevitable that it is going to stop working at some point in the immediate future.
As an aside, one of the nurses at my cardiac rehab, said they had patients in their rehab class who had around 20% and were still upright. Not something I'd want to try, but strangely reassuring!
It's not uncommon to have no symptoms. It does make the diagnosis a bit of a surprise, but even if the tests in the New Year turn something up, take a deep breath and try not to panic. I went in for an angiogram with a possible stent and ended up being told I has severe stenosis and needed a triple bypass.
Thing is, even that wasn't anything like as bad as I expected and it tends to get you quicker appointments with your GP afterwards 😉 No reason to believe you will need surgical intervention, and I hope it doesn't come to that, but if it does, equally no reason to panic. Many of us have gone on to live full lives.
Most of us would say that your headspace needs as much care as anything cardiac related in this journey, and it is a journey. So ban Dr Google and stay with the good guys on here and the BHF. Incidentally, as someone else mentioned, the meds can take some time to work fully, and may well need adjustments in dosage. Don't be scared to ask your doctors about symptoms you may have, but be aware they may tell you to wait a bit to see if it settles down.
I hope your progress is quick and effective, and don't forget the wonderful thing which is your heart is doing its best within your situation. Any changes you can make to help it will pay dividends for your future.
Thanks so much for your response Paul, it’s made me feel calmer. I’m trying to get on as normal and not let the fear take over but it is a constant in my mind.
My EF was between 25-30 not sure of the actual, so my focus is to stay active, eat well, take my meds and get that number up.
Hope you are all recovered from your bypass, sounds like you took it all in your stride.
Glad it helped. 6 months plus since the op and going well thanks 😊 I was very fortunate to have a couple of hearties I could talk to in real life who could tell me what to expect. It made an enormous difference and enabled me to get my head straight beforehand. I also started a WhatsApp group so I only had to post one update rather than repeat myself to everyone individually!
Yeah, one of my chest drain wounds was taking a while to close so I called my GP. I was told the first available appt was in 9 days. I mentioned it was a chest drain from open heart surgery. The receptionist said the doctor would see me in 2 hours. 😆
Hi Paul, just had a call with a nurse specialist who has said it’s probable I’ll need a pacemaker due to my LBBB! This wasn’t something with the cardiologist doctors have mentioned to me before, they only talked about medication therapy! I’m so concerned now, why would she say this to me when no doctor has mentioned it before?
My experience with cardiac consultants is that there is a hierarchy and the ones you see initially are not necessarily the most senior consultants. They will review the findings and the senior consultants may decide on balance that more needs to be done than was initially thought. This happened to me with cardiac stress tests before I had the angiogram which delivered my surprise news. I actually looked at it as positive, because it meant that they were continuing to review my situation.
It is also true that it may be the nurse's opinion based on their experience to date. By and large, their knowledge is pretty good, so they may be correct. The consultants may have come to the same conclusion and possibly have not yet had the opportunity to talk to you face-to-face.
Either way, from my understanding, the procedure to implant a pacemaker is nothing like as intrusive as a CABG (Coronary Artery Bypass Graft) or valve replacement. So I wouldn't worry from that point of view. If you need a medical opinion, get in touch with the consultant and ask whether the nurse specialist was correct, as it hadn't been mentioned before. Contacting their PA/secretary is probably the best thing unless you have a direct means of communication with the consultant. Remember, deep breaths it's a shock, but not a disaster 😊
Thank you for responding. It’s all so overwhelming, struggling to keep my head straight. The consultant I saw just this morning was private health, he didn’t mention the pacemaker! I don’t care if I do need one as long as it helps to fix me, it’s just so overwhelming. I really appreciate your message, it’s hard to let this take over my conversation with my family as I don’t want them to worry
Can't help much with the way private healthcare works I am afraid. I expect it's pretty similar to the NHS in that consultants don't necessarily talk about treatment with patients that they have not yet decided is relevant.
Your family will worry, there's nothing you can do about that. They will probably worry more if they don't hear anything from you. I used a WhatsApp group to keep friends and family informed, and that worked well, they knew that I would do an update when there was something to say. I know what you mean about not wanting to talk about it all the time, but if you control what you say and when, that leaves space to talk about regular stuff as well.
I am lucky that my employer has cover for private healthcare but I think it will end soon seen the diagnosis.
The cardiologist I saw today and the nhs cardiologist after my echo both did not mention pacemaker just the nurse! It’s just overwhelming I’m struggling to deal with it.
I think the biggest issue is not knowing what is your future treatment is going to be. Once you know what is on the cards, you can make the mental and emotional adjustments necessary. So you need to get in touch with whoever is in overall charge of your care, it's not clear from your post who that is, and ask them if the nurse was right and a pacemaker is needed. You can't figure this out on your own and shouldn't expect to.
I've been told that since left bundle branch block is an electrical dysfunction of the heart's conduction system and not a structural abnormality, medication will not reverse it. I'm sure you'll be referred to a cardiologist by your GP so that you'll get an accurate cardiac evaluation and appropriate testing to determine the cause of your low left ventricular ejection fraction and proper treatment and followup care.
Yes I have LBBB and my echo showed EF of 25-30 , I have medication for the EF. Not sure about process for the LBBB, think dr just wants my EF to improve first.
I had a cardiac arrest @38yrs. De fib at about 58 yrs. my ef has been 25-35 since the beginning. I am 79 now . And don’t get out of breath, doing normal everyday things.
Yep lots of medication, about 12 tabs a day for different ailments. The one that has been helping me most, is a new (to me) beta blocker, I think) called carvedillol.
Hello there, think of it this way will you, from my experience it sounds they have be able to sort it before it got much worse and that's a massive benefit.
For me, I wasn't so lucky, my cardiologist (after being rushed to A & E with what they though was something else) said why didn't you seek treatment earlier, I said I thought it was just a sign of me getting old when I found I was taking longer and couldn't do as much.
I have since found out my first measurements were 5 to 10% on one side (i am glad I didn't know it was that bad)and 15% to 20% on the other, at my last MRI I was 48%, it just goes to shows what the meds can do.
It took time, and I still have to be careful and I chose to follow the path it isn't about what I can't do, but it is about what i can do. I don't let it control me and I can tell you, you can have a good life even if it turns out slightly differently.
Hello, yes I was told later, and was very surprised. It makes sense what your cardiologist says (expected rather than confirmed) as I believe (and this is my thoughts only as I can't be sure) was either found/confirmed to me following either a ultrasound or more than likely a MRI scan.
I have also been genetically tested which so far has proved inconclusive, (might get tested again in about 5 years when things have advanced even further), as they still don't know why!
My sister has had tests too which thankfully showed she didn't, (so her kids aren't at risk), which is great news,
Have the meds not made your heart better? Have they said you will progress or expect hinge to get worse in 5 years? From forums and my chats with the doctors they have mentioned that the heart can remodel and you can go onto lead a normal life?
As i said I have gone to 48% (the normal is considered 60%) at the last count and am doing well, I am not sure what the medium term holds for me, and I live each day as it comes (I could drop dead tomorrow). What I would say is one of the positives from me being ill, was I went from a half empty person to one who is half full who enjoys my life and what I do. I try not to let anything bother me now. Also where as before I was always a Billy Wizz trying to do everything in half time and was annoyed with myself if it was perfection. Now I don't.
I will ask however what is a normal life? I don't drink, smoke etc, don't go swimming anymore, go the gym but avoid running am careful to avoid excess heat and cold and eat well. Now for someone whose normal life is enjoying more than a few drinks, eating fatty/salty none healthy food doing little exercise, then if they continue with that, then in my opinion they are asking for more trouble. (By the way I am not saying this is you for one moment).
But you’ve improved so much to 48% , do the cardiologist not think you can continue to improve? Seen your levels were so low when initially diagnosed?
I’ve reduced alcohol, don’t smoke, cut out all bad food and walk around 5k most days with my dog, I’d say I have and already had a pretty good life style before diagnosis but must admit my alcohol consumption before was highly above the guidelines and I’m thinking maybe this contributed to this?!
When I first saw my consultant he was considering a pacemaker, but after a second MRI about 18/24 months in he thought my progress had been that good I didn't need one. I put that down partly to my efforts as well as the meds. I was really chuffed. In your case it might well be you can get up to normal if you can on doing the right things, at the end we are all different.
Not sure if I can further as despite my progress I am still considered vulnerable and always will be. Heart failure can be successfully managed but not cured. Last month i ended up at hospital due to my heart history they wanted a second more specialised opinion as I had a really bad chest that wasn't getting better. It turned out after further tests I had pneumonia, they nearly kept me in but instead give me a massive dose of antibiotics and 2 take away with me. The bizarre/good thing was I felt my heart coped alright with it!
You are doing brilliant on the exercise front and food, and on the right track with the drink, |I understand having 14 units a week (not in one go) is OK. I don't know if it did have an effect, it may be you may never know.
I don't go abroad by choice, but I did ask my consultant if I could and he said yes. I do think however you do need to be careful in very high/low temps. I think the problem with swimming is the change of temp can raise/lower the blood too quick, (someone will correct me if I am wrong).
How long have you had HF for? Sounds like you’re coping and managing it well. It’s amazing what the medication can do these days, I feel very grateful they are available.
I was diagnosed with dilated cardiomyopathy and severe heart failure 4th October 2022 age 36. My ef was 19% and my heart was enlarged. I had an mri and ct scan and 4 months after I was diagnosed met my cardiologist and had another echo where I was told I was as good as out of heart failure with an ef of 49%. I was told by a cardiac nurse I would need a device fitted but as my heart rebounded so well it never happened. January this year was my first check up and my ef was measured at 48% so I was told no change. However at the appointment the person doing the scan had mentioned my heart had reduced in size a lot. When I was diagnosed she said my heart was 7.1, this year it was 5.8 and normal is 5.6 so not bad at all. I should have another echo next month. I am back doing a very physical job and living my life as normal!! I hope this helps.
Sound like I am where you were in 2022, amazing you’ve been able to rebound and are out of t he heart failure. I hope I will be where you are soon. What meds did you take?
I am on the “4 pillars” for heart failure but I’m sure the 4 meds can vary from person to person. For me the cocktail is bisoporal, entresto middle dose, Dapagliflozin and spirinalactone. I was initially on frusomide and apixiban aswell but both of these were removed when my heart was stronger and I had stayed in sinus rythm. I was also on a 1.5 litre of fluid per day restriction which has also been removed. I honestly cried when my cardiologist told me this in January 2023 and I came home and drank the best part of a 2 litre bottle of water in 1 go!!!😂 there are plenty of people on this forum with similar positive stories! Things can get better!
Did anyone ever mention a pacemaker given your EF was so low? Mine is 25-30 so pretty low too. But the dreaded Dr Google articles say it’s needed in anyone with EF lower then 35.
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