Aortic dissection & aortic aneurysm information support group

Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

Hello everyone! 

I'm 64, married for over 30 years, no longer work (art gallery assistant) and no children. Oh, and we live in Cumbria in the north of England which is incredibly beautiful. That's me in a nutshell except I have Marfan syndrome, had a planned aortic valve & root replacement in 2007 and from a remark made by my surgeon at that time 'luckily' realised I was having a dissection on 19th March last year which no doubt speeded things up in A & E as far as diagnosis was concerned.

I was in Keswick, on the way to meet a couple of friends for a 'girlie' afternoon. Instead, gripping vice-like pain in my back, tried dialling 999 but too breathless to speak! A pharmacy yards away got an ambulance within minutes and so to the nearest hospital and a CT scan. All within about an hour. Unfortunately my self diagnosis proved right, not the afternoon with mates I'd hoped for!

It's a type B AD and after consultation with the Freeman hospital in Newcastle decided it was too extensive to operate and management by medication was the option. To cut a long story short, the first doctor was totally gloomy about my prognosis, a few months to live if lucky, the second doc a week later a bit more pragmatic and in between I was shunted from ward to ward like a waif and stray, all in a slight fog of morphine! After 2 weeks (and an effective laxative) I was allowed home with a carrier bag of pills and what seemed to me a poor prognosis.

Now all that's a year ago. I gave up work and love being at home (feel safe) and going out alone is still a bit of a challenge. I still have the ticking time bomb feeling but try to push it to the back of my mind and just get on with stuff, pace myself and rely on gut feeling as to what & how much I do (Kimberley's advice!). I feel much more positive!

I haven't met anyone else in person with a similar experience so find this website helps fill that gap and is supportive, informative and intriguing; dip into it from time to time and am gradually working my way through the blogs and forum. Thanks everyone, especially Graeme & Greg for their welcoming words.

That's it for now, gone on enough... Be pleased to hear from anyone with Marfan's who's also had an AD to compare notes!

Warm regards,  Mo.

 

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Tags: Marfan, syndrome

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Comment by JEN WILLIAMS on March 29, 2014 at 12:19

So, if it wasn't you, there must be another woman in Cumbria, who had an AD at the same time as you, who was in the Freeman. Now all you have to do is find her.

I live in a village in Durham and have found another two women who are in the same state as me, one a granny at the school gates, another the hairdresser told me about.

It seems strange that there are so many women that have them, but we are not considered for checks by the NHS. Mind, I am the same age as you, Mo, so we would have been too young. 65 next month.

Comment by Mo Sanderson on March 28, 2014 at 17:02

Happy anniversary Jen!

Many thanks for your comments. I was actually in hospital in Carlisle and the doctors there consulted with the Freeman as I would 've been whizzed there for an operation should it be deemed necessary.  Apologies for my ambiguous wording, obviously still puddled! 

I read your story with great sympathy a few weeks ago, must read again to take it all in. In the meantime take care Jen and keep on keeping on!

Mo.

Comment by JEN WILLIAMS on March 28, 2014 at 10:41

Haven't got Marfans, but I missed you in the Freeman by a couple of days.

If I had not been misdiagnosed in Durham Hospital we could have met.

Today is my first anniversary. I know what you mean about the doctors.  I was told by one that it would be good to have the operation, and by another that it was lucky I was not having it as I could be paralysed. They did not actually argue about me at the foot of the bed, but changed their minds within half an hour. I was the last one to know, of course.

Even when I was discharged, on a Saturday, they forgot to tell the nurses on the ward. Fortunately the doctor who had said so was still in the hospital, so they managed to get his signature when he came back.

The ward was awful, women with amputated legs, and waiting for toes to drop off. HDU was a nice new ward, but the ward I was on for three weeks was in the old part of the building. Certainly not a show ward.

There's more of my story elsewhere on this site.

Maybe we'll meet up at the Freeman sometime. By the way, they did tell me about you, as in another woman had this last month, and she's gone back to Cumbria now. However, there must have been a different nurse on the HDU, as she asked me where the dressing was to be changed, not knowing anything about an aortic dissection.

Comment by Graeme on March 24, 2014 at 10:48

Hey Mo

A lovely brave story! The Freeman is a very good hospital so that is a good start! Please keep us all updated on your life and times.. I think their are a few on the site with Type B medically controlled dissections...

cheers

Graeme 

Comment by Mo Sanderson on March 20, 2014 at 17:42
Thanks Richard!
Mo.
Comment by Richard Deal on March 20, 2014 at 12:21

Blimey, I remember that effective laxative!

Great to have you here,

r

Comment by Mo Sanderson on March 19, 2014 at 13:14

Thanks Pam,

Mo.

Comment by pam elis on March 19, 2014 at 11:23
God is great! Even when the doctors aren't sure, he opens a door. Have faith and be encouraged.

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