OHS twice ?

[linnielizzie]

Has anyone had a second OHS ?

[Yumz199725]

Hi linnielizzie I'm currently waiting for my second open heart surgery, well I say waiting I have been told by my heart team I will require valve replacement surgery which will be major surgery for me. My first was coarctation of the aorta repair when I was a day old. What was your first and what will be your second?

[linnielizzie in reply to Yumz199725]

I might be jumping the gun somewhat - I am just very breathless again suddenly and wondered if something had gone wrong or I had another problem - I will be sensible and go and see my GP to see what is happening.

[Yumz199725 in reply to linnielizzie]

Sounds like it's for best to see your GP then. I been having similar issues with being more breathless so I told my consultant at my last cardiology appointment and I have a few tests being sorted soon. Is it ok to give a bit more info on your condition as I noticed dosent say much, but no pressure if your comfortable sharing totally understand.

[Hidden]

Hi LinnieLizzie,

I hope youre not having to have it done again so soon.

I've had 3 x OHS, incorporating Three AVR, One MVR + a Repair, but, I'm a novice compared to one member.

The second was planned, but, the third was somewhat unexpected, four months later.

Heed

[linnielizzie]

As I said above I might be jumping the gun - I am just very breathless again suddenly and wondering if something had gone wrong or I had another problem - Just looking for reassurance from someone who has been there I guess - I will go and see my GP to see what is happening.

[it-whiz]

Hi LinnielizzieHopefully there will be perfectly normal explanation for you feeling breathless again, that won't require open heart surgery again.

But should that be the case for you, I have been through it twice and lived to tell the tale!

My first in 2016 was unexpected, when I caught endocarditis and had my mitral valve repaired. The second, in 2019, was planned to replace my mitral valve and knowing how I recovered from the first I stepped up my cycling to further improve my fitness, which I'm sure helped my recovery second time round.

I wouldn't say I was looking forward to it, but certainly felt reassured and calm about it all. Having the same surgeon helped, even if on the day, we were all sat in the operating theatre waiting for him, as he had had a late night performing a heart transplant!

I now have regular checkups being on warfarin, but at the end of the day, I'd rather be in the system, than it being a ticking time bomb!

Hope that helps you?

Mark xx

[linnielizzie in reply to it-whiz]

Thanks Mark - definitely reassuring - I can get an appointment tomorrow hopefully and start to find out what's happening - I am just hoping it is nothing sinister but as you say if it is then it is best to address it and get in with it - it won't go away on its own.

[it-whiz in reply to linnielizzie]

I am so glad that helped. Do please let us know how you get on?

Mark x

[linnielizzie in reply to it-whiz]

Hi Mark Just thought I would send you an update. I was sent for lots of tests though still waiting for an echo (bless the NHS ) to finish me off !! Nothing to be found apparently. The valve repair is good and my heart seems to be operating well. I had a small area of lung which didn't drop back after surgery which may or may not be causing a little of the breathlessness but nothing to account for the sudden problems I was experiencing. The consultant was rather 'nothing to see here' so go away 😂 Soooooo I am just getting on with my life and trying to stay chilled as the stress was making things worse. Honestly, I feel a bit of a fraud !! The breathlessness comes and goes still so who knows.

[it-whiz in reply to linnielizzie]

Hi LizzieIt's lovely to hear from you. Please don't feel like you are a fraud, you know your body best and what you are feeling.

I don't know if you have had covid or not? But my wife who had covid last spring (2022) has over the last 6 months been struggling with breathlessness and although a chest x-ray showed her lungs were clear it really does 'seem' like the long term affects of covid. Like you she's had plenty of heart tests and they were all clear, which is reassuring but still leaves questions as to why.

Your situation sounds similar, certainly in terms of symptoms.

And I would imagine, you're thinking although they've confirmed your repair is still good and your heart is working well, what is causing the breathlessness? And that isn't nice, the not knowing.

That doesn't sound nice, the way the consultant was with you. You know you aren't making it up, and it's pleasing to read you are being positive and trying to enjoy your life. Do you have any close family to help you, or are you teaching this on your own?

Sending you a big hug

Mxx