Help advice

[BelindaF]

re my profile I would like to hear how other people are coping with Heart failure and AF

[Hidden]

Hello

It really frightens you when you get a diagnosis regarding your heart we can jump to the worse scenario straight away and our minds run away with us

I had 3 heart attacks and then Bypasses and found out through my heart attacks the muscle in my heart in a certain place will never get any better and I got so upset yet with some exercise lifestyle changes I have been told I can live a normal life maybe not quite as fit but fit enough

It is hard to deal with but they are so clever these experts in what they can do and you may not be as you were before but you will adapt to the new you and congratulations on the wonderful news you will be a Nana soon and you will be about to enjoy spoiling them for years to come

Follow all the advice , take the meds , make any lifestyle changes needed and if needed and you feel Counselling will help then that can really help to x

[BelindaF in reply to Hidden]

Thank you very much for your kind words of support. Take care xx

[Hidden in reply to BelindaF]

x

[Hidden]

Hi, How do i deal with Heart Failure.

I'm a great believer in being positive and making the most of things, no matter how difficult it appears at the time. However I say this on the back of multiple issues over decades as per my bio. Those experiences, have given me a different perspective, so I take the view of getting on with it.

That said, I find Heart Failure more difficult to understand, and it had me spooked when I was diagnosed last summer. I get why I've had Heart Valve surgeries, they come and go, my health improves, but, you have to work at it much harder and longer with HF.

Your EF of 30% is lower than what mine was, which was 38% 12 months ago, in April this year my latest Echo showed an increase to 45-50%. Whilst still in Low HF, it has improved nonetheless. I'm on Bisoprolol and Entresto, the latter seems to have very well for me. I also try and exercise more, in fact I had a round of golf today, for the best time in years.

I also have Permanent AF, but that's controlled by my Pacemaker, so it generally, a case of out sight of mind.

I fully appreciate it will be a shock to your system and you'll be worried, but, the best thing to do is to listen to the cardio team, they have vast experience of dealing with patients like us.

Best wishes

Heed

[Anon2023]

Hi. It’s so scary getting a diagnosis of heart failure. Just those words alone are enough to strike fear into anybody. I’ve found that avoiding Google is a good idea and accessing forums such as this one and pumping marvellous instead is much better.

I was diagnosed with heart failure in March this year during a telephone call with a cardiac nurse. She just mentioned it in passing and it wasn’t until last week when I spoke to a cardiologist who actually explained what it was. It wasn’t even my own cardiologist (who I’ve not seen since my surgery in January) it was someone I’d been referred to for atrial flutter. Anyway, he said they should rename heart failure and call it impaired heart function instead as it terrifies the hell out of people. He said that EF is just one measure of heart failure and not to get too hung up on the numbers. He said that there are tons of meds which can help and that I had to focus on living my life. I’m also accessing counselling via the nhs. There are lots of people on this site who live long and full lives with heart failure and this gives me hope.

As for the AF, mine was flutter but I went back into normal rhythm after a cardioversion. I’m also on meds to keep it at bay. There is tons of information on this site about AF and some very knowledgeable people who will be able to explain the treatment options.

I’m sure, like me, you will find lots of support on this site. Don’t be afraid to post if you need information or help.

Best wishes 😊

[Larneybuds in reply to Anon2023]

Totally agree....immediately scary words Heart Failure....it should be renamed. Heart failure just sounds like it's all so final when in fact there can be a good future if one is diagnosed with it and still plenty to look forward to. Perhaps we should set up a renaming campaign !! Xx

[Anon2023 in reply to Larneybuds]

Good idea. I think it’s universally hated by patients and health professionals. Xx

[Larneybuds in reply to Anon2023]

It's awful....and even more daunting when you go and see the large sign at the hospital....Heart Failure Clinic ..,not a welcoming positive start for the first timer attending. Thank you for your reply....think most of us have similar thoughts about the title x

[Lizy76]

I was diagnosed back in march and the words heart failure put the fear of god in me. I honestly thought that was it. Google was my worst enemy and was the worst thing I could of done! After being on Entresto and serveral other tablets I am now waiting for the results of an MRI to see if my heart muscle has strengthened from 20% left side. I am however feeling so much better than I was and back to work full time. Life no longer Seems doomed for me. I wish you all the best on your heart journey x

[RufusScamp]

I had a discharge letter saying I had severe heart failure. I was terrified. Then I realised I could do most of the things I previously managed, could travel, and spent a week walking in the Alps. With medication, diet, exercise and a pacemaker, I have recently been discharged by my cardiologist as being almost back to normal.It is a shock, but there is a good chance of improvement with modern treatments.

[Callista]

Dear BelindaMy advice would be don’t panic and don’t obsess with taking your bp and pulse all the time. I was diagnosed with arrhythmia six years ago. After 3 failed ablations, a pacemaker, several cardiac arrests and a week in intensive care, I now have an ICD and a good drug regime. Last week I managed a walk of 19 miles in one day and 16 miles another day.

So don’t give up hope just persevere in getting the right treatment for you which isn’t always straightforward!