Why is heart muscle failure so difficult to live with?

[PinkKizzie]

I was diagnosed with an EF of 25% and now take regular medication after an unsuccessful pacemaker implant. It's quite scary knowing your heart is not working properly.

[56dick19]

hi I was in a similar position about 8 years ago my AF was at 19 and I understand how you are feeling I got very depressed and eventually had to retire 6 years ago but my AF is a lot better now and I have a ICD and I still take medication for depression and other medication. I sure you will fill better about things keep your chin up get a hobby to keep you occupied if you can manage it

[56dick19 in reply to 56dick19]

Hi only just seen your reply. I have 3 hobbies model railway keeping tropical marine fish and wood turning thanks for your reply

[Coffeeandwalnut]

how come the pacemaker implant was unsuccessful, that’s such a shame. It takes a while for cocktail of meds to begin to help and they may need to be tweaked a lot. Obviously I don’t know what pacemaker you were going to have and what heart muscle problem you have so I can’t really make comments. I have a crtd implanted and I have dilated cardiomyopathy with a low ef like yours which I’ve had for 17+ years. It is scary but there’s so much information out there from proper sources which may help. X

[Grasshopper1976]

Hello Pinkkizzie, I was diagnosed with Heart Failure last August. And having loads of tests. I've got my first MRI , at the end of the week. Since being diagnosed, I've had conversations with Heart Failure team. Regarding my condition and symptoms, some what of an explanation why HF is so difficult to live with our hearts pump less blood around the boody to our Organs, the next problem area is the lungs they become less efficient due to low blood supply and less oxygenated blood circulated around our body, so general health deteriorates, causing tiredness and fatigue. And other issues. We are consigned to rest of life medication. I hope this is helpful and rember we are not alone.

[Grasshopper1976]

You are welcome. Yes the routine of meds and appointments, scans, test the results. New information and diagnosis and it's lot too process. And we all who use this forum have got a lot in common. And we all have knowledge and information to share. And support too give. And we can check on everyone's well being, if you have more questions than answers, we're all in the same boat. support and advice is within this community. Best wishes.

[Heartinthehills]

Hi PK. Low EF is something you can get used to and worth trying to manage it through advice on the BHF support pages. Regular exercise helped me moving from formal cardiac rehab classes to a Phase 4 cardiac class then just keeping it all going when I moved house away from any support groups. From around 3 Paracetamol a year to a daily cocktail of up to 9 different medications took a bit of getting used to but became routine with a bit more focus when going on holiday. My EF has stayed at 30% for over 10 years and not stopped me from enjoying a less active lifestyle. The key to this has been doing some sort of regular exercise, whatever I can manage on the good days and the not so good days. There are some good indoor exercises among the BHF cardiac rehab pages for bad weather days. Like you I am a keen gardener and found a handy lightweight kneeler/stool to take the strain out of some jobs. Good luck in finding what will keep you going.

[Heartinthehills]

Hi PK. I forgot to mention that regular exercise helps me carry on doing some more strenuous activities. I managed to get back to hillwalking (slowly) in Scotland after a year of persistent recovery exercising. I also swim, slowly, twice a week which is my best test on how fit I am. You should not give up on dancing if you enjoy it and try going back to it after working on your new fitness levels for a while. I was lightheaded for about a year but this diminished after dropping furosemide which I didn't need any more. One or more of your medications will be causing it and in consultation with your GP you may be able to reduce or drop dosage in time. Best Wishes.