Newly diagnosed with heart failure

Hello, I'm new here and was recently diagnosed with heart failure and waiting to be referred to the heart failure team. I don't know what to expect and have a thousand questions running through my mind. I'm 54 years old and have been told that I am grade 3 on the New York scale. My EF rate is 29% and I don't really understand how good or bad that is. Any advise or knowledge would be very gratefully received. Thanks for reading my post :)

17 Replies

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  • As it is Friday night i thought I would just let you know that there will be plenty of people who will read your post. Just maybe not tonight as it's Friday.

    I must confess I really don't know anything about that ether.

    But please don't worry yourself on what isn't facts.

    Wait until your cardiac team talk to you on the next steps of going forward.

    Remember, heart disease used to be a huge issue & scary for the patient.

    Not anymore. Thw cardiac teams are so skilled it's unbelievable what they can do.

    So please don't be afraid.

    On Monday you will get loads of response on here. The guys in the club you have joined are fabulous. Lots of positivity & great advice. Sending hugs, Jo 😊😊

  • Thank you for your welcome :)

  • Echoing Sina, plus a warm welcome here. The 1000 questions you have, start writing them down as it's too easy to forget when you are with the cardiologist, they will be able to allay most of your fears. There us a good page at the BHF here on heart failure bhf.org.uk/heart-health/liv...

    There are a number of people here who will be along to give their own experiences, the forum is open day and night for all to talk, rant, pass on tips and generally say hi

  • Thank you for making me feel welcome :)

  • Hi Becky, I was diagnosed with heart failure when I was 56. My EF was 23% so roughly similar to yourself. It is just about 2 years now since my diagnosis. I take various pills and have had an ICD fitted. My EF is now up to 38% and I feel almost back to normal. I am told that it can be a bit of a roller coaster with highs and lows and at the moment I am on a high. It has taken me this long to get my confidence back. I know it is a long journey with a lot of information coming at you at the beginning so don't be afraid to ask any questions. Hope all goes well.

  • Thank you :)

  • Hi Becky. I have heart failure too, was diagnosed around 6 years ago. Your ejection fraction is low compared to someone with a "normal" heart, but I've learned not to attach too much significance to specific numbers/tests, eg ejection fraction, as there are so many other factors to consider when assessing your condition. (This is also why googling doesn't tend to help either - 90% of what you find won't apply to your specific case, but will make you panic nonetheless, often unnecessarily. Stay away from Google!) Your heart failure team should be able to give you a more complete and accurate picture when you see them. I agree it's a really good idea to write your questions down to make sure you find out everything you want/need to know.

    It's pointless telling you not to worry, but I hope it helps you to know there are plenty of us around with the same or similar conditions and we are living full and happy lives. My heart failure is treated with medication and a pacemaker/internal defibrillator. My condition has been stable for the last couple of years and I feel as though new treatments are being developed all the time. The stage you are at now is a tough one, but it will get easier as you find out more.

    Best of luck and keep in touch x

  • Thank you for your reply, A pacemaker was mentioned but too much info to take in at once.

  • Hi I got diagnosed, out of the blue! In February still trying to get my head round it, but I have to say the NHS have been amazing, I have had numerous tests as an in patient, seen my cardiologist numerous times, I attend the heart failure clinic every couple of weeks, my nurse is lovely, always there to answer questions and try and put my mind at rest, she refers me to my cardiologist right away if they are any problems, I have very low blood pressure and they are still trying to get the meds right, which is a huge problem but hopefully it will work out eventually, as our other friends on here said our conditions are all slightly different and honestly Google doesn't help, I no that from spending hours fretting over things I have read, now I trust my cardiac team to be honest, helpful and there for me, also talking and reading other people's posts on here makes me know I am not alone with this, except I don't have a fit bit to join in! Take care xx p.s if you have cardiomyopathy there web site is great very informative.

  • Thank you for your reply :)

  • Hi Becky-Biscuit - I too was diagnosed this year with heart failure after the echocardiogram showed an EF of 13%. After asking what this meant it became such shock to my system - took days and weeks to let the realisation sink in! The cardiologist explained that a normal healthy heart of the general population would have an EF of 50 - 70%, and worst case have below 10%.

    At that time my heart had been unable to pump properly and therefore had retained fluid - swollen legs, abdomen and 'hobbits' feet! He put me on a furosemide drip for 2 weeks to 'push' the excess fluid out. Bonus of this was all bloating ceased to be and I could breath properly, allowing me to catch up on much needed sleep AND I was 2 stone lighter! After 3 weeks my EF read as 19%.

    My cardiologist and the arrhythmia team have been THE most Excellent. I had the second part of a Hybrid Ablation in April which along with the fluid ejection changed my daily quality of life to almost normal.

    I have literally just had a CRT-D device fitted and my medication has been adjusted and changed, so I have high hopes that my daily quality of life will continue to be 'normal'!

    Good luck with your cardiology team and further decisions on treatment. I read everything I could online and wrote questions down - no matter how trivial they sounded. It truly helps you be part of whats best for your heart and body - and that is so important. This is about you and what is going to help you.

    Will be thinking of you - hope all goes well.

  • Thank you for your reply and advice :)

  • Hello Becky nice to meet you.

    Like others on here I to have Heart Failure The scale you refer to is the New York Heart Association scale which is 1 to 4. 1 is no limitations, exercise does not give you undue tiredness, breathing difficulties etc. 2 is Slight Limitations 3 Marked Limitations 4 is unable to carry out any physical activity without discomfort. You can move between the numbers on the scale depending on medication etc. Personally I have moved between Severe to Moderate and currently I am at Moderate moving between 2 and 3 on the scale.

    When I was told I had H F I had already had by pass surgery, but my Heart Failure Nurse was concerned about my Shortness of Breath so it was a visit back to the cardiologist. More tests followed, Muga scan, Myocardial Profusion Scan followed by a further Angiogram so I am now awaiting a further procedure to unblock my Right Coronary Artery.

    It is all a little scary but you need to try to stay relaxed, easier said than done, but if you have confidence in the Heart Failure Team they will monitor you and titrate your medication to ensure your well being

  • Thank you for your reply :)

  • Hi Becky I have just joined the forum and seen your post. I too have HF. Firstly I have had HF for 22 years and only needed tablets to keep myself well and leading a normal life.

    Earlier this year however my HF worsened and I am at 32%. Which means my HF has worsened and I now needed something more. They first increased my medication... spent time carrying out further tests such as CT Scan and MRI scan... to identify the cause of the HF and to check if there was any artery blockage. Also ecg scans will show which part of your heart is damaged. Although these tests take time they are necessary to allow the Dr to then work out the best treatment for you.

    As a lot of people have mentioned I similarly was told I should have a CRT D device fitted to help me.

    I have just had this device fitted a week ago.... I was terrified of having this op... however in just this short time I already feel much better...it has been such a quick recovery from my op and will now improve my heart and stop the deterioration.

    Hopefully the above gives you a little insight into next steps which although scary.... trust your doctors and you may not need a device.... but if it is suggested.... grab the opportunity with both hands ... it really is a life changer.

    I have given mine a name... Kurt... he is my new best friend and my guardian angel. All the very best and you are not alone x

  • Thank you for your reply. The doctors think I have had heart failure for a while without knowing and looking back I can see that I have had symptoms for at least 2 years without realising. I'm due to have a cardiac MRI next month and am waiting for an appointment for an angiogram. Not too keen on the idea of the angiogram but will do as I am told.

    It will be good to stop or ease the breathlessness as I am very limited in what I can do and find it frustrating to say the least.

    It's good to hear that you can improve after having the heart failure for such a long time and it am glad you are doing so well.

  • Hi Becky.... one of the things the team asked was what would i wish I could still do ...... and I said I wish I could dance...and they have promised me that now I have my device fitted.... I will be able to dance once I a fully recovered. 😀.

    I know it's a scary time.... but there IS life after HF diagnosis. If you have any further questions/concerns as the process moves forward don't hesitate to shout. If i can give you any reassurance or help through this time I would be happy to 😀 karen x

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