Feeling devastated...

[Phoenix35]

Hi all,

I have a sub aortic membrane...I am 36 years old and under the ACHD dept.

I have posted a few times and after many trips for tests to Royal Brompton I received the phone call that I was dreading this morning.

The team have had their meeting and the recommended plan of care is to have open heart surgery in 3 to 4 months ideally but I need to lose weight before they will operate. They want to move the membrane out of the way?.?.

I don't want surgery. I want this to go away. I cry as I type this with the sheer fear at my calamity.

So many thoughts and questions, nothing makes sense anymore.

[Gail1967]

I know it will be really daunting and you will feel overwhelmed but try not to worry about the open heart surgery. As my surgeon said when I was told I wasn’t leaving hospital until after I had had surgery, they perform surgery every day- they really know what they are doing. You have to trust the experts that’s why they do what they do.

I’m now 3 mths post surgery. If they told me I needed to have open heart surgery tomorrow I would say OK that’s fine. Good luck

[Shar28]

Hello, I’m sorry you’re feeling like this. Facing OHS is a big thing and as you’ve probably seen from other posts on here many people are scared stiff by the prospect, so you’re not alone there. But the underlying message is one of hope and positivity as your cardiology team can do something about your condition.

Please talk to someone about how you’re feeling. Your GP can refer you for counselling and maybe for help with losing weight in a suitable way for you. The BHF nurse helpline are fabulous at answering questions too.

All the best.

[Red_Baron]

Hi,

As others have said in this forum, it is only natural to feel scared. Having been through the process myself (see my post from yesterday) when you’re on the other side you almost think “is that it?” As Gail said, if I had to have it repeated again tomorrow, it wouldn’t bother me. Half of the battle is dealing with the unknowns hence use this forum to ask those of us who’ve had OHS any question you want. My op was at Harefield, the sister hospital of Brompton and you couldn’t be in a better place. My cardiologist said “for you, this is the biggest thing you will ever face but, for us, we do this every day, week in, week out. We know what we’re doing”.

Stay strong and use this forum - that’s what we are here for.

Best wishes

[Beith]

Hello Phoenix35,

I sympathise. I think you're going through the worst bit now ... waiting. All the waiting simply encourages your mind to go off imagining everything that could go wrong. As others have said, the standard of care is superb. I came out of the Brompton on Tuesday having had a triple bypass 6 days earlier; I know it's not as invasive as open heart surgery but I still had to have my chest opened. I am in awe of the surgeon and his team to be able to do what they did. Every single member of staff that I encountered in the Brompton was empathetic, caring and skilled. If you have the tendency to be a 'worrier' there's little point in saying 'don't worry'! My perspective was, 'If I don't have this operation, I won't be alive for much longer'. So try to focus on after you're fixed and what you'll be able to do. In the meantime, get some positive friends around who can help and encourage you to lose the weight. All the best.