Hello everyone!

[BB99]

I've just joined this forum having only recently visited the BHF website. I have really quite bad heart failure (EF of less than 20%) but it's currently not getting noticeably worse. My biggest problem is anxiety, having just researched what all the terms and abbreviations in my medical history mean☹️😬😱

[Chinkoflight]

Hi BB99, I had a stroke, the diagnosis is a shock, the anxiety is an ongoing pain. What to do? I found BHF and this site helpful. This site can be good for specific help say re meds and procedures, there are a lot of knowledgeable people.

It also works very well for support especially if you are finding a way to get yourself going, motivated, and wanting to take control of your health as far as is possible within the absolute limitations.

For example I found from BFH Couch to 5k which my GP said was okay if I followed it closely and monitored my well being. There is also a HU group to support this. There is also a HU group to support strength and conditioning , and again these programmes enable you to find a suitable starting level. Again get GP or Practitioner Nurse advice.

There is occasionally opinion which you may need to sift , but by and large everyone is trying to help.

And in my opinion exercise helps beat anxiety, even very limited exercise. And my cardiovascular is measurably improved.

Having never run in my life and being overweight, I can run continuously, very slowly, 5k, and this morning I volunteered at my local Parkrun which is a joy.

Take care.

[GrumpyScot]

Hi BB99.

My EF is 23. Yes the diagnosis was quite a shock. I had spent 5 hours being worked on in resus for extreme pulmonary edema and peri arrest. I got the echo from the ICU. But anxiety can be crippling. The current research indicates that the trajectory of the Illness one key factor is that exercise reduces. Now the question is the reduction in exercise because of the illness or because we decide not to put the heart under pressure. I have been told that exercise is crucial as the heart is a muscle. But it is imperative that you speak to your HF team about exercise as we are all individuals so take advice from your team. There is brilliant advice on this forum but there is also dangerous advice as what works for one can harm another.

[BB99 in reply to GrumpyScot]

Thanks GrumpyScot. I understand your attitude towards exercise. As my ejection fraction got worse I found myself adopting strategies that meant I got less and less exercise. Doing my shopping online and having it delivered has meant I haven't found myself exhausted and dizzy in a supermarket but then I've missed quite a lot of gentle exercise, so I've made little changes to how I do things.

[Shar28]

Hello and welcome to the forum. I think anxiety is pretty normal when you’re first diagnosed then researching what everything means. One very helpful thing I was told when my husband was first diagnosed with his heart condition is to be very careful on the internet. There’s heaps of information out there and some of it is very good quality. But (and its a big but) some of it is outdated, plain wrong or simply doesn't apply to you. For example, many clinical trials/studies featured white men over 70 with other health conditions too and the medicines and best practises have changed since they were conducted in the 70s/80s/90s even 00s. My husband didn't fit the profile of many patients in studies amd so the results predicting life expectancy of 5 years for his condition were complete and utter rubbish. Its best to stick to the charity (like BHF), NHS, NICE, university, hospital websites.

Best wishes to you and your loved ones.

[BB99 in reply to Shar28]

Hello Shar28. I apologise for taking so long to reply to your welcome. I was diagnosed with heart failure about 6 years ago, although it has never been adequately explained to me by my cardiologist or heart failure nurses. In fact, when I've asked for a prognosis there's been a lot of waffling and changing of subject. Like, I suppose, many cardiac patients I've educated myself by finding abstracts of medical trials online. I feel pretty good at the moment. Just a bit easily tired. How about you?

[Shar28 in reply to BB99]

Hi, it’s my husband with the heart condition. He gets fatigue but overall he’s doing really well, thank you. I guess all you can do is ask your consultant what the name of the actual condition causing your heart failure is and see what they say. After all, it can’t be nothing. Logically it has to be something or several somethings. Good luck in getting to the bottom of it. X

[BB99 in reply to Shar28]

I understand my diagnosis. The prognosis is unexplained. That is, I know what will happen, it's what will happen between now and then that is unclear.