Hi all, it’s been very helpful reading your posts, I have recently been diagnosed with LBBB ( Left Bundle Branch Blockage) initially I wasn’t to worried, I was put on BP meds & beta blockers and was told I needed more investigation via an echocardiogram. The echo showed that I have LVSD with an EF of 33 - 35% and have HF ( cardiomyopathy) I was admitted to hospital for 2 day where I had an MRI & Angiogram ( my arteries are clear thankfully). I have been put on 6 different medications & referred to cardiac rehab for a 12 week exercise program. I am 58 & have had no problems other than palpitations that I put down to anxiety, the LBBB was discovered by chance on an ECG recommended by my doctor because of my high pulse rate during blood pressure monitoring. I am obviously terrified after being told I am in HF and feeling very low & weepy wondering what the future holds for me! It’s come completely out of the blue and I’m struggling to get my head around it. I’ve been told that I will have another Echocardiogram in 3 months & if there is no improvement in my EF I will have a device fitted. Any sort of reassurance will be gratefully welcome please.
Heart Failure : Hi all, it’s been very... - British Heart Fou...
Heart Failure
Worrying about something that may never happen will not help you. Be reassured that an underlying heart related condition has been identified and you are now on a programme to be treated for it, and as a consequence your heart health risk has been lowered from where it was before, and you are now actually much better off than you were. Your rehab course will be of benefit to you not only to help and educate you, but to look around and see that there are fellow participants who are likely worse off than you, which is what I found. Take each day as it comes, and enjoy the life in front of you.
Thank you
Hi, your journey sounds very similar to mine. It brought me back to those early, tearful days. I was living my life, quite healthily I thought, after years of abusing my body with the twin social ills of smoking and drinking wine, and was taking loads of exercise, when suddenly I had a diagnosis of heart failure.
I can remember bursting into tears during my first meeting with the heart failure nurse to both her embarrassment and mine.
Eight years later, and many changes of medication, many tests, positives and negatives, and my ef is 50%, I’m walking 10,000 steps a day, (as often as possible), and very grateful for feeling so much better.
It’s such a shock to the system and there are good and bad days on the way, but the whole process has been a positive experience and made me appreciate life so much more.
I hope you feel better soon and take heart from the many, many people for whom the medical world has improved their health.
(I too was under consideration for a device, but developed endocarditis which made me unsuitable for one due to the scar tissue left on my heart by that illness, which was completely unrelated to my heart failure, just bad luck!)
Thank you so much
Hi heartbeatI can understand your concern. Have you had your results and the terms explained to you?
I'm not a medic...and others on here will explain things better....and you might already know this, but EF function is never 100%. Mine is low at around 45% but this is not classed as heart failure though I know I have been "borderline" and I'm being medicated in a few months to try and hold that off...so you can see the numbers can be somewhat confusing.
Heart failure is an inaccurate and scary term and it means generally that your heart is not pumping efficiently. There can be different causes and therefore different forms of treatment.
I don't know anything about LBBB but cardiomyopathy (HOCM) runs in my family. I don't know what device you are talking about but I am expecting a pacemaker at some point. I have 3 relatives with one. Other people might post about their experiences of devices/ implants and LBBB which may be more helpful than my input.
I have AF. I'm late 40s and have lived with that since my late 20s. It's only the last few years that it's been such a disruptive part of life and I had 5 procedures last year that did not do what was hoped so I'm going through a meds change now to see where that goes. Its permanent now so will just be about managing symptoms.
I've had tears and moments of disbelief. Completely get that. And I've moved through it / with it and doing pretty well now.
I found it good to talk things through, ask questions, and also have time out from thinking about it and just living/ being. Wishing you well and hope you get answers from medics and further responses on here. And hopefully that will be helpful for you.
Thank you so much, I hope you continue to stay well. Take care
Hi there, I’m sorry to hear of your diagnosis. What you are feeling now is very normal and common when first diagnosed. I felt the same and still get moments like this a year on from diagnosis. My route to heart failure is different to yours (I had a heart attack at 51) and being completely honest, it has been a very difficult journey. What I did find helpful was the cardiac rehab course. I’m pleased that you have been offered this too. They will guide and support you in exercising safely and provide information about diet and medications. You may find that your medications increase your EF. Mine did, I went from 39% to 44% in 3 months and now, almost a year on, its 54%. Another suggestion is to take a look at the Pumping Marvellous charity website and Facebook page. It’s a patient led charity especially for HF patients and has been absolutely pivotal in me learning and understanding my diagnosis. I wish you all the best.
Thank you so much for taking the time to reply. Take care.
Thank you everyone, I meant to reply to you all just here ! I need to get used to using the platform. I wish you all well xx
Thank you so much for your advice I will be checking in regularly. It’s feels like the fun has been sucked out of everything but I suppose it’s normal to feel like that. Things like going out with friends for a drink and meal, holidays & drinking cocktails in the sun. Sounds shallow but you can’t help but think how will I adjust. Obviously health is more important but I’m sure you understand what I mean x
Hi, I think it's normal to be scared of the future & what it holds, how you will adapt & the loss of your normal life when you have a diagnosis of HF.
However, given time it really does it easier & you get used to the new normal. There's no reason to think you can no longer holiday in the sun, (I know people who have flown all over the world & have low EF's) have a cocktail or even two, meals out with friends etc you just need to adapt to how you do things, being sensible is a must & definitely no binge drinking, etc My husband was diagnosed with HF in 2012 & had an ICD fitted, we've been abroad many times since diagnosis, we often go out for meals & until recently he's always enjoyed a pint or two.
With the right medication, lifestyle changes & exercise as agreed with your medical team there's a good chance your EF will improve, my husband's EF improved from 30 to 51 at one point.
The only other advice I can give you is don't Google!! Listen to those who have a lived experience of, or are caring for, someone with HF, it really isn't all doom & gloom.
I believe someone has already mentioned the Pumping Marvellous group, I can't recommend them highly enough. The charity is incredibly active in promoting HF, the causes, meds etc. It works closely with a number of HF clinicians (cardiologists & nurses) and in recent years have been instrumental in getting NICE to approve new meds to improve not only your health but reduce hospitalisation & increase longevity. Their Facebook support group is really friendly, lots of lovely helpful people with lots of advice. If you do Facebook, then I would consider becoming a member of the group.
Good luck 🤞 x
Thank you so much, I will try to be more positive 😊
What is the name of the Facebook page please ?
Bear with me, I'm just gonna get you a link for it.
I had a similar experience, but with an E/F of 20%. This was four years ago. With medication and a pacemaker, my E/F has improved to 60%. I am still on the meds, but doing OK. I would strongly advise you to do the rehab course. Mine showed me how much exercise I could safely do, and included a programme of talks with various people about meds, diet, anxiety etc, and of course I met with others going through the same thing.
Heart failure sounds terrifying, but it just means inefficiency rather than failure.
hi. I know how you feel. I am 51 and I was diagnosed with heart failure last year. I’ve never smoked, don’t drink and thought I was relatively healthy. The problems with my heart took me completely by surprise and I’ve struggled to adapt to this new reality. Although I’m still terrified I’m trying to do the things I enjoy, like travelling. Things just take a bit more planning these days. If you are struggling ask your doc for some help with your mental health. I think most people on this forum would agree that the psychological impact of heart problems is huge. You are not alone. Xxx
Thank you so much, it’s so nice to be able to chat to you all about it x
Heartbeat .. it seems like our hearts are twins although yours have a higher EF than mine. I've yet to see the cardio people so have had no treatment or advice so you are much more "in the know" than I am.
I really hope you get seen very soon, take care .
Have you had the opportunity to discuss what may happen in your case with your cardiologist or GP yet? Heart failure is an unnecessarily frightening term.
As Fullofheart says it just means inefficiency rather than failure. The psychological impact and anxiety, as I think you have found, can be worse than the condition.
If it helps, my mother had heart failure (as a result of a heart attack) when she was 70. She had an implantable cardioverter defibrillator (ICD) fitted and survived for another 20 years.
The hard part for her was getting over her anxiety. As a result she did not take advantage of the rehabilitation classes offered and never got back to any exercise and limited the things she did as she was afraid it would damage, rather than strengthen, her heart. In her last few years her resulting lack of strength also prevented her doing what she wanted to do.
Now my mother in law has managed to keep a positive attitude to life (walking to university of the third age) and is in far better physical and mental shape despite her heart conditions.
I haven’t spoken to anyone yet, but I will be seeing my doctor this week, I’m not sure about the rehab classes, it’s a 12 program but as I am feeling ok and going back to work I was hoping to go out for walks and try to manage my own exercise schedule. Thank you for taking the time to reply it’s much appreciated.
I’m sorry to hear about your mum . I hope you continue to feel well it’s shocking isn’t it that you do everything you can to stay healthy and still get these problems. I appreciate you taking the time to reply. Take care.
Hi Heartbeat
Sorry to hear about your recent diagnosis and also that you’re feeling so low. Given the gravitas of what you’re going through, I think it’s natural and justified.
I don’t know if it’ll be any consolation but I was diagnosed with dilated cardiomyopathy which my cardiologist believes was triggered during my pregnancy with my first child. My EF was a similar figure to yours and I had gone 2.5 years without diagnosis and grown another baby during that time (and birthed via c section). 4 months after starting my medication, my heart function had returned to the normal range of 50-55%.
I hope that your medication will help to improve your EF and as scary as the term heart failure sounds, a more accurate description would be heart pump inefficiency (or something more eloquently put).
Please keep us posted with how you’re getting on, I’ll be thinking of you.
Best wishes
Soap 🧼
I’m glad you are ok especially as you went through pregnancy, but it just shows how this can creep up on you. I’m glad you are well and it’s great to hear that your EF has improved I hope mine does too. I feel like like all the fun has been sucked out of everything don’t you? I’m hoping I can still have a glass or 2 of wine especially on holiday & enjoy meeting friends without worrying about everything I do. It’s like a dark cloud hanging over you isn’t it? Thank you for replying. Take care
Unfortunately, my EF suffered when I had an unexpected third baby but I’m doing my best as we all are 😁 so I’ve done 2 pregnancies in the dark and 1 with (superb) cardiology and obstetric care and although my daughter had to be born at 32 weeks (due to my naughty heart!), I’m grateful for all of it 🥰
I do empathise with how you’re feeling but I would say - having HF doesn’t define you and you can still do things albeit a bit more slowly or carefully than before 😉 just perhaps not everything!
My dad still drinks whilst on his medication although I would suggest seeking counsel from a medical professional as everyone is different.
I have at times felt the dark cloud that you speak of and I think it’s natural to feel that way; I would like to encourage you to look for the rainbow 🌈
My rainbow is my family and I try to keep going and do all that I can to feel well for them 😁
I hope that you can enjoy many more holidays and time with friends the way that you love doing it best!
Best wishes
Soap 🧼
Thank you so much for taking the time to reply, I’m so glad you are doing well and I’m sure your life is extremely busy with your little ones which thankfully must help you to focus your mind. I will try very hard to look for a rainbow which I think is my 3 beautiful grandsons. Thank you again xx
I managed to contact endocarditis last year. I have had a leaky mitral for 30 years but whether through the endo or by chance it failed and during treatment I was sent to the Brompton for repair. Following the op I was also diagnosed with HF with an EF of 35. I have been on various meds and cardio rehab for 8 months but at the last scan my EF was heading back toward 50 (according to the radiographer, but waiting for official result from consultant) so don't be to disheartened as I'm sure with the correct drugs, diet and exercise it can be controlled
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