i have just been diagnosed with a leaking heart value. It has all happened over the past 4 days and in complete shock

[Laurensophie]

I have been advised I need a heart valve replacement

[Pilgrim2]

Hi Laurensophie,

It can be very alarming when they tell you that you need heart surgery. Apparently quite a high percentage of adults have a heart problem, but many stay minor or remain undiagnosed. I had my diagnosis earlier this year and currently awaiting surgery.

The good news is the surgery has excellent outcomes and you should be back to normal life within a few months.

Read up on the literature they give you and check the British Heart Foundation website. It will help you understand and prepare. Best of luck!

[Laguna23]

Good Morning Laurensophie

Yes it is a complete shock when you are first diagnosed with a heart condition which needs open heart surgery. I have had a similar experience and no one really understands how it makes you feel or the emotional and mental mountains you need to climb whilst in this situation. After various tests I am now waiting on my surgery date. It’s interesting they actually were able to diagnose valve replacement to you rather than repair. I didn’t think this could be established fully until the actual surgery. However be sure they absolutely will look after you and you can get through this and return to your normal life again. Stay strong and positive it’s the only way to get through it. Take care xx

[Laurensophie in reply to Laguna23]

Hi thank you for you message. He thinks I will need a replacement valve because I have a leaking valve as well as it no opening fully. It’s a real lot to take in. He just said I would need a operation very soon as it is severely leaking. How long ago was you told you need open heart surgery ? It’s just been a rollercoaster and I know I’ve lots more to deal with..We must all stay strong and positive xx

[Laguna23]

morning 👏I was told back in April I had a severe mitral valve regurgitation which I now know means it isn’t closing properly and needs repaired (hopefully) or replaced. My understanding is that whilst it may be the highly likely to repair it the surgeon never really knows until they perform the operation. However from what you describe I think you may have the exact opposite issue with your valve as it isn’t opening. I don’t know enough about it really but I do think you’ve got a different kind of issue with your valve, like mine it is quite common and can be fixed, so try to enjoy your days while waiting for the additional tests they may ask you for before deciding what the best course of action is. Take care xx

[Laurensophie in reply to Laguna23]

Hi, I also don't know enough about it. I think we do have a similar condition as he did say I have a severe regurgitation due to my valve not closing properly but I also have a problem with my valve not opening fully but he did explain that this isn't on its own a major problem and he would monitor it if I didn't have the severe regurgitation as well. Would you mind me asking if you have any symptoms ? x

[Laguna23 in reply to Laurensophie]

Hi again

I sometimes have discomfort on the left side of my chest, and I do get much more fatigued than I used to and much more easily. I am still managing without any medication to assist me at the moment, which I hope will be the case until I get my operation. Good luck with your journey, they will definitely look after you. It's just getting over the initial shock of the diagnosis I found so hard to deal with. There is not a lot of guidance on how to cope with the mental health aspect of heart conditions, you just have to find a way to wrap your head around it and stay as positive as possible.

[Pilgrim2 in reply to Laguna23]

hi Laguna23 (and LaurenSophie). I see you mentioned symptoms. I am interested in those as I have found little on the web or via the consultant. Initially I had the usual increase in fatigue when active and aware of my heart beating harder at times. Over the months I have had various aches, numbness, muscle fatigue, nausea and pumping enlarged veins in neck and temple. Lately I now also understand breathlessness, as a strange short frequent gulping of air. My tolerance for any kind of activity has also decreased significantly and a noticeable brain fog. Have you experienced any such things?. But we must all keep positive and I just hold onto the fact this can all be fixed and back to normal. Hope you get your date soon.

[Laguna23 in reply to Pilgrim2]

Hi Pilgrim2

I have pretty bad fatigue and sometimes I just need to lie down. I have good days and not so good days. I also have discomfort in the left side of my chest most days. The biggest issue for me has been the initial diagnosis, I was in shock and then being able to really accept this has happened to me as I have consistently exercised and looked after myself. To find out I have a congenital heart valve issue which requires open heart surgery has given me pretty bad anxiety. I have the background fear of becoming seriously unwell before I get the operation. I still have no date and I’ve been aware of the severity of it since early April, so it’s been challenging emotionally, mentally and physically. I hope you get your date soon too. Sounds like they are now on your case so that’s good news. Take care and stay positive, I’ve been assured this can be fixed and normal life will resume!!

[Laurensophie]

Afternoon Pilgrim 2 &Laguna 23.

My symptoms are palpitations and just the need to close my eyes and lie down. As it’s only been a week since I was diagnosed I am not sure how much of these symptoms are anxiety with trying to come to terms with what has been found. I was at the gym 4 times a week up until I was diagnosed a week ago, the cardiologist has told me not to do any gym classes just walking until I have had my MRI. So in a week my life has changed, and like you say Pilgrim this is what is so hard for me also the shock.

We have to be positive and strong minded to get through the mountains we have to face but there are so many positive stories of people getting through this and living a normal life again 🙏. Cath xx

[Georgert]

I too had a leaking heart valve it does come a a shock especially when the surgeon told me that I would only last another two years ar best. I had a replacement aeortic valve about ten years ago and have been fine ever since. Please dont worry yourself and I wish you well for the future.

[Pilgrim2 in reply to Georgert]

Thanks GeorgeT, its good to hear positive success stories to boost those if us still waiting.

[Amanda05]

Hi all, my husband has not long had a Mitral valve repair... again a huge shock.... how is everyone doing as I see its been a few months now x