Severe Dilated Cardiomyopathy with heart failure - and now AF - anyone else out there like me?

[Jishuang44]

I have severe dilated cardiomyopathy and heart failure but had been doing well despite the inner chaos. I played tennis 5 times a week, kicked a football with my children, took long walks, and was able to run up the stairs to my flat.

After the metapneumovirus triggered AF 6 weeks ago I stopped being able to play tennis, kick the football or do the stairs but was able to still walk the short distance to the shops.

Now that the temperature has dropped below double digits I cannot even manage to leave the house as I am too breathless and my legs are too heavy to carry me more than half a block. I’m also struggling to breathe at night though my oximeter says my oxygen saturation level is ok.

Are there others out there who also have DCM and HF as well as AF? If so, how are you faring and what have the doctors been able to do for you? How do you cope in cold weather?

[Tsagura]

Hi Jishuang, I was diagnosed with severe dilated cardiomyapathy in Sept 2019, heart failure with a very low ejection fraction of 25/26 after cath lab procedure, resulting in a severe aortic aneurysm and leaking aortic valve...symptoms were, very weak,short of breath when laying down, had difficulty walking half a block...was prescribed entresto ,bisoprolol and spironolactone...was able to reverse remodel my enlarged heart and increase my ejection fraction up to 55 in 6 months prior to surgery plus felt a lot better going to cardiac rehab to to prepare for surgery (got stronger) had open heart surgery in June 2020 replaced my aortic valve with a pig valve and repaired the aneurysm, had a-fib after surgery for a couple of days (wasn't a very nice feeling trying to walk from hospital bed to the washroom which was probably only 6 or seven steps) they started me back on low dose entresto and my a-fib permanently went away and have been in normal sinus rhythm ever since...started walking twice a day and another round of cardiac rehab with a low salt diet and I feel great again...It's important to exercise, take the right meds and completely follow a low salt diet and hopefully you can reverse some of the heart failure symptoms and feel stronger....