Newly diagnosed with heart failure

[Becky-Biscuit]

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

[Sina-6491]

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 😊😊

[Becky-Biscuit in reply to Sina-6491]

Thank you for your welcome

[skid112 Heart Star]

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

[Becky-Biscuit in reply to skid112]

Thank you for making me feel welcome

[Hawdanoost]

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.

[Becky-Biscuit in reply to Hawdanoost]

Thank you

[laura_dropstitch Heart Star]

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

[Becky-Biscuit in reply to laura_dropstitch]

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

[Hidden]

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.

[Becky-Biscuit in reply to Hidden]

Thank you for your reply

[Ktomoph_]

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.

[Becky-Biscuit in reply to Ktomoph_]

Thank you for your reply and advice

[Prada47]

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

[Becky-Biscuit in reply to Prada47]

Thank you for your reply

[Heartlady1]

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

[Becky-Biscuit in reply to Heartlady1]

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.

[Heartlady1 in reply to Becky-Biscuit]

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

[MiloAlfie in reply to Heartlady1]

Hi heartlady1 this comforting to read was diagnosed in Feb and very scared. Hope you are still doing well X

[Heartlady1 in reply to MiloAlfie]

Hi Milo... I am doing absolutely fabulous. I have gone from Ef of 31 ( severe heart failure) up to 43 ( medium/mild heart failure!) Its like a miracle!

I do look after myself no alcohol... lots of fish and chicken and fruit,veg and salad ( with the odd steak and chocolate) I have built up my walks to 45 mins a day 5 days a week. I could probably do more but that's enough for me.... and at 58 years old I am in better shape than a lot of my " healthy" friends lol.

So yes it's not just a device to keep us going... it has given me a whole new lease of life. And I have had HF since I was 33 ... so have had it for 25 years. As long as you look after yourself you can live with HF x

[MiloAlfie in reply to Heartlady1]

Hi thank you for your reply I am 54 a women username probably looks as if i am male😊 I was diagnosed Feb I have also had Ms for 15 years and had breast cancer in 2014 . My worry is my limitation over being able to exercise enough for my heart due to my MS. With this virus now I just feel I don’t stand much chance I normally have a positive attitude but have felt very scared oner HF. I would like to stay in touch. Glad you are doing so well 😊X

[Heartlady1 in reply to MiloAlfie]

Hi Miloalfie, I understand that at the moment things feel very scary... you probably feel it's all out of your control.... and those words Heart Failure sound very frightening. There have been lots of posts previously about how those two words make people think its tge end.

So let me try to reassure you a little . Firstly there are various degrees of HF and so you may have mild heart failure.... which can be easily managed with the right medication.

As I have done for over 20 years.

And then even when I deteriorated to tge Severe heart failure stage... the team were great in providing a different solution for me ... a device... which has brought my heart back to medium/mild HF. and I feel fine.

You mentioned exercise and worrying about how much you can do... so I would not worry about rushing out and trying to exercise right now... I would await the docs to do all their tests first... and hopefully work with you to put you on medication and only then would I ask tge Dr to put me to rehab.

When you get to rehab they are great.. they explain that it's not about rushing out and trying to push yourself ( which could make you worse) but they teach you instead about slow warm up exercise... and then building up your exercise over time. I started off just doing a 10 min walk... and that tired me out! But I was doing something. With their help I built up an extra 5 mins every 2 weeks... and now 18 months later I gave built up my fitness levels so much that I can walk 40 -50 mins without struggling. But that's MY limit, yours maybe less than mine but it's about what each individual can tolerate... some people on here walk for Mike's every day .... or go running... that would not suit me ( and I wouldn't fancy it anyway lol) but you just build up to what fits best for you. But I would say wait for now.

The other thing I did which helped me feel I was back in control was I focussed on eating healthily ( mainly fish and chicken) lots of fruit and veg.I stopped all alcohol ( why drink it when there is no good for me but can further damage my heart-and I feel so much better now I dont)

And by doing these simple things I am looking after my body as much as I can..... and it has, I am convinced, helped me stay well as much as the medicines.

Dont try and do things too much too soon.... and be kind to yourself and hopefully yours will be mild HF too x

[MiloAlfie in reply to Heartlady1]

Hi Heartlady Thank you so much I have been told my HF is mild to moderate but not had Mri yet. It is good to hear how positive you are so glad you are doing well. If you need a chat anytime I am here😊 take care. X

[Terina01]

Hi Becky

Snap I am 59 and just been diagnosed with Heart Failure.. Still in shock,but started on ACE inhibitors and water tabs and already feeling better. I am told it can take a while to get the right drug level. How did you find out what level of failure you have?

[Rebecca45]

Hi my son has heart failure and Alcapa EF 15% . He has now been put forward for an appointment to meet the heart failure nurse . But is always monitered for his meds from his consultant . His own doctor has not bothered with him . They just moan when he needs his prescriptions that i should wait till he has no more tablets

[Hidden]

Hi I am 63 years old and was diagnosed with heart failure in August this year, my EF was 23% on last echogram, I experienced and still am worry, anxiety, frustration, impatience, my head was and still is full of questions, I am being examined and im still waiting for results,

It seems so slow and taking forever, but one thing I am learning is, its a slow process and it takes time to find the right treatment for you,

Be patient, write down questions you have that pop into your head, and when you see consultant you can ask what questions you have written,

Its been months for me and im still waiting for answers,

But I advice to only listen to your health team,

Hope this eases your worries

[busy5lizzie]

Have read all the posts you received some were helpful others just confusing as I don't understand the abbreviations I won't worry just now and wait for consultant to get back to me.Thank you for letting me read your posts xx