Advice please

[AdamJames157]

Hi

I’ve posted on here before but looking for advice. I am 32 years old and was recently diagnosed with a leaking bicuspid aortic valve.

I have been told it’s serve, and that my LV has dilated and moderate wall thickness. Ejection Fraction is 63%, however severe end diastolic volume.

I’ve been put on Lisinopril in the meantime and I’m waiting on meeting a surgeon and more tests.

I’ve already been for an echo, TOE and Cardiac MRI.

I am not getting real symptoms like pulsating neck, groin and it feels like it moves my body sometimes. It can be difficult to sleep at night.

I’ve since been put on Zoplicone to help me sleep which does help, however it doesn’t seem like the NHS is in a hurry. I’ve been told to expect to meet a surgeon within a month and then possibly six to eight weeks for surgery afterwards.

I am obviously worried that my heart could get even worse in between that time. I was previously extremely fit and no medical issues whatsoever, until now.

I have noticed that my heart rate has increased (resting heart rate) which I am worried about also.

Can anyone please give any advice? Much appreciated.

[Rhinos67]

Good morning, I also have a bicuspid aortic valve but mine is severely blocked and I'm waiting for surgery.I can't advise you I'm afraid, but I'm a member of a Facebook group called UK Aortic & heart defects. I'm sure that others in the group would be able to reassure and answer your questions. We also have a fortnightly zoom.

Best wishes

Joanne

😊

[Wellington19]

Hadmy aerotic valve surgery in December, i am 72 recovered well you will be fine

[AdamJames157 in reply to Wellington19]

Many thanks for your reply. Any advice ahead of procedure or what to ask,etc.

I’m extremely anxious about it all and still can’t quite believe it has hit me at 32 years old. All the best.

[Cliff_G]

Hi AdamJames. I'd agree to try and find a more focussed support group such as the one mentioned.

Your condition will have taken a long while to develop, after all, BAV is a congenital condition. Whilst there will be a wait involved, they are looking after you by giving you appropriate meds. Sometimes the waiting for a call is the hardest bit. Generally, things will be moving along in the background and you shouldn't need to chase up, but I've found that things can go wrong, such as miscommunication, hence I've usually set a date by which if I've not heard anything I will call up and let them know I've not heard. I've had such things as, 'oh, you're not on my list', or 'you're on my list of things to do' (i.e. not been done yet). Whilst there's a limited amount you can do, you should try as far as you can to 'manage' your own case.

Regarding your heart rate, it may be some of the meds, perhaps ask your GP, though if it's only a moderate rise, there's probably nothing to worry about. You could try some progressive muscle relaxation recordings, if they have an effect it may be that you're worried enough to simply put your adrenaline levels up.

Re. Zopiclone, I trust the doctor has told you that you shouldn't take this for more than 2 weeks. It is addictive and also when that happens, it becomes less effective. Another non addictive med to aid sleep is Mirtazapine, you might be able to suggest this. Note that this one does speed the heart up at higher doses, but you might find even half the lowest dose does enough (like it does for me).

Best wishes