Aortic dissection & aortic aneurysm information support group

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

I am a survivor of 10yrs in April this yr...I live on my own surrounded by people that dont understand that you nearly wasnt there not so long ago. You are left to build yourself up without the support of the NHS, but saying that I have become stronger as result. Its scarry sometimes when your body complains n you know where that pain is coming from.
I had an acute dissection in April 99. They of course wrongly diagnosed me as having a chest infection n gave me antibiotics. Next day no better n so pain meds followed, still no reprieve till I called 999 later that day.Deteriorating onto life support in hospital they sent me for an MRI, but had respiratory arrest inside it. They resuscitated n transfered me to Southhampton where they did emergency surgery, replacing my aortic heart valve n grafting the root.I had a type A dissection n died 3 times going thru all this. Left to my own devices til 2001 they found another dissection but it had moved down to my abdomen. All they can n will do is check on me periodically, sending me for scans etc, but have been on lots of meds since 99 n on warfarin because i have a mechanical valve. My dissection has a circumference of 4cms, not good considering that the UK will only operate when you are 6cms dilated. Yet I keep my chin up - I have my good n bad days but you have to just concentrate on the things you can do rather than what you cannot do Keep positive...have a good network of friends....I am here to tell the tale n will continue to do so no matter what! Its in the power of my hands.... :-)

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Comment by Helen Margaret Smith on January 17, 2010 at 20:44
Hi Allie....
Yes I am now, but the doctors debated whether or not I always had the full length n not just diagnosing the second in the descending Aorta in 2001. They thought at first that i had dissection from the root in 99 but stopping short of the arch, and dissecting from the arch downwards. So I had both the A Type and B type at the same time but the B type was not noiced till 2001. I dont work... except voluntary because am on so much medication that it just tires me out and causes stress which am told to AVOID,Did initially but after the second diagnosis in 2001 I had to look after myself because they said I could go on to lead a normal life n I think thats why they noticed the the B type due to "overdoing" things. I had alot of pain n got really scared. And a lack of knowledge about dissections didnt help either. The doctors say to me now that I have to be my own doctor in that I should look after myself and watch for any changes. Just lately I have been getting concerned with losing control over the use of my legs....they seem to lose sensation and when I stand up after a period of sitting that they go weak n I have to sit down before I fall down . The doctor is sending me for a doppler scan to see what the blood supply to the legs are like.The trouble wth dissections and anuerysms is that they dont "stay put", and the powers that be say that my dissection could eventually move into the legs. Saying all that though this is just me. I have no idea how others such as yourself manage from day to day...I hope I havent depressed you... most of the time I stay positive about my condition...I'm still here nearly 11 yrs from the first diagnosis and operation so that is a milestone apparently. I'm glad they got to you in time ....Yes it will be nice to chat...
Helen :-)
Comment by Alison Roberts-Pagent on January 17, 2010 at 18:15
Hi Helen,
Are you dissected for most of the aorta now?
How do you feel from day to day? I'm dissected from arch to Iliax. Dissected in June 2006 and underwent emergency surgery in Manchester Royal Infirmary , about 120miles away, the within 18hrs. I was extremely lucky as they had to stop surgery when my tissue tore every time they tried to stitch. They managed to save and re-attach my valve and mend at the root.
Work full time, but find it tiring.
Could we chat?
Comment by Graeme on October 23, 2009 at 15:58
Hiya Helen - and welcome to the UK AD group!

Good for you! 10 years and still going strong - that's what we all like to hear! Yes the NHS is good at fixing us up but long term follow up is a bit erratic..hey still - we are ALIVE! Again your story is so familiar- wrong diagnosis -misdiagnosis -and 10 years later it is still going on as in the tragic case of Ann Skelton which her husband has just joined us and told us of her story. Yes I can vouch for meds - but as I say to people it's kinda fun being a borderline hemaphiliac - as most of royalty is (!!) so maybe that makes us the same...ha!

As for mechanical heart valves - yep - got that t-shirt too.. see my latest blog on mechanical heart valves and living with the 'tick-tock machine'! But again as my wife says "if I'm a clickin' and a tickin' - I'm alive!

Anyway Helen - welcome - and long may we all keep on tickin'!

Warmest regards

Graeme Archer


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