HF and HCM. Ablation and Pace. Breathlessness and the inability to move.

[Heartylove]

I have HF 4 and Hyperthrophic Cardiomyopathy. This year I ended up in hospital as I couldn't breathe or move. My first visit lasted three weeks and I was sent home with new meds but did not feel any better. A month later I found myself in ICU with the same symptoms but with Kidney and Liver problems. I had dialysis and a month later, after my heart which had been in A Fib since February and wouldn't fall below 168 bmp I was given Abulation (removal of AV node) and a CRT. I felt so much better and could breathe. Roll on a few weeks and I feel I am back to where I started from, severe breathing problems accompanied by fatigue where I cannot walk across the room without this feeling of suffocation, even turning in bed brings on the suffocation.

Now water retention has gone down, lungs are clear, medicines have been changed from Bisoprolol to Sotalol but there is still no change in my breathing or ability to move,

Has anyone managed to find a solution to the breathlessness? I should day I am being paced at 70 during the day and 60 at night.

Any help or advice would be greatly received.

[Wodney1966]

Hi I have hf n dilated cardiomyapathy on entresto bisopolol sotolol I've got no energy breathless feel crappie all time got icd fitted 😉😅

[irene75359]

I am so sorry, I can't offer any advice but just wanted to say I hope you get something to make you feel better and soon. What you are going through sounds utterly miserable - sending very best wishes.

[Buffafly]

I can’t help but I suggest you post on the British Heart Foundation forum as they are more likely to have similar problems.

[Heartylove]

Thank you.

[bassets]

Sorry to hear about your problems. I hope you are able to get some relief soon. Best wishes.