B
bongodan
Hi everyone. I've been totally encouraged by your forum. Been lurking for a few months now - I've been waiting for a valve sparing/replacement since December 2007 and it's been driving me nuts.
But things have changed! After many haranguing phone calls, letters and emails I have finally obtained a DATE! Well chuffed. The Royal Brompton in London, Prof Pepper. Friday July 18th (admitted Weds 16th). Which seems like a while away until you reckon on 7 days of work, 12 off and then I'm in!
Argh.
So..
I am 33, live in Scotland with my lovely wife and 2 v young kids. Great fun. I am a forensic biologist for the police which rocks. Am a Christian which is even better. I'm into the outdoors, esp mountain biking - was in Morzine in the French Alps last summer with bikes - fantastic. I might have done less if I'd known what I do now.
Medically..
Brain haemorrhage during Harry Potter at the cinema in Dec 2005, woke up 3 days later in a neurosurgical ward, took a few months to get over, no ill effects. Whilst there they did an echo, amongst other things, and found my aortic root was dilated. And then asked for a repeat echo after 6 mths and told me not to worry about it. I didn't worry about it. Neither did they.
They forgot about it. Got the repeat echo July 2007, and the result not till 2 years on in Dec 2007. It was now 6cm. They forgot to tell me but it needed operated on. Now. Urgently. First thing in the New Year. I wanted a 2nd opinion from a specialist so went to Prof Pepper at the Royal Brompton in Jan 2008. He was up for trying a valve-sparing, with the option of a replacement if it all goes pear shaped. It has taken these 6 months to get a date.
Phew!
Bit of an insight into the UK system. No-one's fault, you just get lost and there's big Queue's.
Genetics results have put me into a Marfan's Type II/Familial Thoracic Aortic Aneurysm/Loeys Dietz bracket, even though there is nothing else wrong and I have no symptoms! Strange feeling. Guess it won't be quite so unreal after the op.
So, again, THANKS.. I have found this site a lifesaver during the quiet moments, afraid, and I wonder just how on earth (or elsewhere) I am going to do this.
My total respect to you all.
But things have changed! After many haranguing phone calls, letters and emails I have finally obtained a DATE! Well chuffed. The Royal Brompton in London, Prof Pepper. Friday July 18th (admitted Weds 16th). Which seems like a while away until you reckon on 7 days of work, 12 off and then I'm in!
Argh.
So..
I am 33, live in Scotland with my lovely wife and 2 v young kids. Great fun. I am a forensic biologist for the police which rocks. Am a Christian which is even better. I'm into the outdoors, esp mountain biking - was in Morzine in the French Alps last summer with bikes - fantastic. I might have done less if I'd known what I do now.
Medically..
Brain haemorrhage during Harry Potter at the cinema in Dec 2005, woke up 3 days later in a neurosurgical ward, took a few months to get over, no ill effects. Whilst there they did an echo, amongst other things, and found my aortic root was dilated. And then asked for a repeat echo after 6 mths and told me not to worry about it. I didn't worry about it. Neither did they.
They forgot about it. Got the repeat echo July 2007, and the result not till 2 years on in Dec 2007. It was now 6cm. They forgot to tell me but it needed operated on. Now. Urgently. First thing in the New Year. I wanted a 2nd opinion from a specialist so went to Prof Pepper at the Royal Brompton in Jan 2008. He was up for trying a valve-sparing, with the option of a replacement if it all goes pear shaped. It has taken these 6 months to get a date.
Phew!
Bit of an insight into the UK system. No-one's fault, you just get lost and there's big Queue's.
Genetics results have put me into a Marfan's Type II/Familial Thoracic Aortic Aneurysm/Loeys Dietz bracket, even though there is nothing else wrong and I have no symptoms! Strange feeling. Guess it won't be quite so unreal after the op.
So, again, THANKS.. I have found this site a lifesaver during the quiet moments, afraid, and I wonder just how on earth (or elsewhere) I am going to do this.
My total respect to you all.