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paul donnelly

Member
Joined
Jun 25, 2021
Messages
11
Waiting for a date from THE ROYAL PAPWORTH to carry out my Tissue AVR, been waiting a few months now and after a few months a sleepless nights Ive eventually go my head round it all, Initially I couldn't understand why I should put myself through such an intrusive procedure where despite being diagnosed with severe stenios it really doesn't effect me that much, I ws assured it would and it has now started.

These last 6 weeks Ive noticed I have become increasingly fatigued ( hitting walls mid afternoon) and on a daily basis feel nauseas and light headed.

Is this usual?

Many Thanks
 
Hi Paul. Just to say I was recently operated on at Papworth. You are in good hands. The waiting is the worst part and I think you are more likely to notice symptoms when you know there is a problem.
 
Hi Paul
Fully agree with Al3x. I am due for second surgery at I am scheduled Royal Brompton and Harefield . My surgeon is Mr Toufan Bahrami. Amy of you guys dealt with Pedro Castrino at Papworth ?
 
Hi Paul
Just a question are you short of breath , swollen ankles or can’t breathe when lying flat ? If so pls contact your surgeon ASAP
 
Hey from Australia
Dunno about usual, but could be nerves..

To the way, good news is it's getting fixed

Best Wishes
 
I had the same thoughts Paul, wondering why because I didn’t feel too bad. But the op wasn’t as bad as I had thought and recovery was mostly no problem. But the big plus is I’m still alive, which I may not have been the case if the surgery hadn’t happened.
I’m 6 months post op after 2 valves replaced with bovine tissue, can’t say I’m fully recovered, but feeling pretty good.
Best wishes for a successful outcome.
 
paul donnelly said:
Waiting for a date from THE ROYAL PAPWORTH to carry out my Tissue AVR, been waiting a few months now and after a few months a sleepless nights Ive eventually go my head round it all, Initially I couldn't understand why I should put myself through such an intrusive procedure where despite being diagnosed with severe stenios it really doesn't effect me that much, I ws assured it would and it has now started.

These last 6 weeks Ive noticed I have become increasingly fatigued ( hitting walls mid afternoon) and on a daily basis feel nauseas and light headed.

Is this usual?

Many Thanks
Click to expand...

No it's not usual in the US. Generally if you have severe stenosis in the US you'd have had your operation within 4-8 weeks, you've been waiting a few months with an increase in symptoms in the last month and a half. You need to contact whatever doctor is monitoring you and tell them there has been a change in your condition. My cardiologist told me that stenosis creeps up and then can go quickly so I was told to get my surgery done in no more than 2 months from when I was told it was needed. Plus it's best to have a planned date, not an emergency operation.
 
paul donnelly said:
These last 6 weeks Ive noticed I have become increasingly fatigued ( hitting walls mid afternoon) and on a daily basis feel nauseas and light headed.
Click to expand...

If these symptoms are real and reflect decompensation you need to inform the medical people to move up your surgery. In the US we call this “dicking around”. Get it done.
 
Hi and welcome to the forum.
it sounds like you now have symptoms. England is notorious for having symptomatic patients wait far too long. I’d put pressure on your team to speed things along, given your symptoms
 
are you sure that the worry of your coming surgery is not causing some anxiety symptoms. The mind can be a most powerful enemy.
You could of course save yourself a lot a time by phoning an ambulance next time you get these symptoms. Not a problem for someone with your heart condition. They will then give you the relevant checks and go from there.( All free of course in little England)
 
Gazza01 said:
are you sure that the worry of your coming surgery is not causing some anxiety symptoms. The mind can be a most powerful enemy.
You could of course save yourself a lot a time by phoning an ambulance next time you get these symptoms. Not a problem for someone with your heart condition. They will then give you the relevant checks and go from there.( All free of course in little England)
Click to expand...

Might be free in the UK, but forum members in the UK wait for their surgeries longer than in other countries. We've had a two or three that went so long it significantly effected their quality of life and one it became an emergency repair.
 
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