Heart Failure with Preserved Ejection Fraction - heart not filling adequately due to stiffness (caused by strain due to congenital defect)

[Amikatari]

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

[Midgeymoo17]

Can not comment on the HF but the BAV is a congenital condition so the cardiologist you see should specialise in congenital conditions (if they do not- they should be Part of an active outreach programme from a specialist hospital that does and have an established referral pathway to the specialist centre).

Under the national standards, All specialist congenital centres are supposed to have access to Short Term Physological Therapies accessible for any patient seen in there network even if follow up from Cardiology does not happen at the specialist centre.

Here is a link to definitive list of Congenital Specialist Centres (Level 1):

thesf.org.uk/members-area/o...

Do not think if your hospital is not on the List- That it is not an approved outreach centre (Level2/3). The outreach centre List is not definitive and entirely reliant on Hospitals/ Level 1 centres supplying that information to the charity directly. To name a few that are missing from the List: Hereford, Shrewsbury, Worcester all who work closely with the Birmingham Level 1. Clearly Birmingham is not that helpful in supplying its outreach information. Oh- Royal Bournemouth too which works closely with Southampton .

[Amikatari in reply to Midgeymoo17]

Thank you, Midgeymoo. My bicuspid aortic valve was replaced with an artificial one. Do you know whether I am still classed as having a congenital heart condition and therefore be eligible for those services?

[Speedy6 in reply to Amikatari]

Yes you are.

[Amikatari in reply to Speedy6]

Thank you! That's good news

[Amikatari]

Bumping this, sorry! Is it normal for heart failure not to be treated except with furosemide for the oedema? Also, please, does anyone have a similar condition (Heart Failure with Preserved Ejection Fraction - when the heart is pumping out ok but not filling up adequately due to stiffness, therefore having less blood to pump out), and if so, are you having any treatment for it? Thanks

[Speedy6 in reply to Amikatari]

Beta blockers help the stiffing of the heart and help it relax and the blood to flow easier,hope this helps,and good luck.