Hi everyone, I had a bicuspid aortic valve that was diagnosed and replaced 2 years ago at age 44 when I got endocarditis. The valve replacement was supposed to be the solution to all my problems (which had been misdiagnosed until then as mental health issues). I was put on furosemide and bisporolol following the operation, which was supposed to be a temporary measure to allow my heart to recover. 6 months after the op, I asked the GP many times why I was still so tired and breathless. Heart failure was not considered, I was instead tested for unrelated conditions and it remained a mystery that they stopped investigating and got impatient if I raised it. One year on, I asked if I still needed those meds - as I thought the meds might be the problem - and my GP said I could gradually come off the bisporolol and stop the furosemide. She admitted later that she didn't know why I was on those meds. I hadn't had a cardiologist since the hospital discharged me back to my GP. A month after stopping the furosemide I noticed my ankles swelling, that I'd put on a stone in weight and was even more breathless. I phoned the GP and she just said to go back on it. This only helped a bit, but my GP didn't seem too concerned and I had to really push to see a cardio, there was going to be a 3 month wait, until I contacted the hospital where I'd had the surgery and the cardio there made me an urgent referral to my local cardio team, and I was seen within days. My new cardiologist diagnosed me with heart failure with preserved ejection fraction, and explained that meant the heart was pumping out ok (fraction of 50) but that it was not filling adequately. He said this was due to stiffness caused by years of compensation for the bicuspid aortic valve and possibly injury from the endocarditis. He took me off the bisporolol altogether and doubled the furosemide, which has reduced the oedema a great deal, but not really helped with the constant fatigue and breathlessness on exertion. My follow-up appointment with him was a rushed 15 minute phone call, in which he said no further medication was needed and that my fatigue and breathlessness could not possibly have anything to do with my heart failure condition. I am at a total loss. I really thought he was going to start trying me on different meds to support my heart function, increase its filling pressure, maybe relax the stiffness, allocate me a cardiac nurse... all those things the BHF and Pumping Marvellous say heart failure patients get access to. I also asked for a cardiac psychologist or counsellor, and he said he didn't know any and I should just go to general mental health services. I don't understand why I'm getting so little support (I thought HF patients were meant to have a team around them) for a progressive condition that requires treatment to slow its progression.
Does anyone here have my condition? If so, please can I ask what treatment and support you receive?
Best wishes, Cathy
Aortic stenosis moderate to severe
Rhythmic
Terrible coughing while waiting for an aortic valve replacement 
Edwards Inspiris Resilia aortic valve replacement 
Should I wear a medical alert bracelet?
