Aortic dissection & aortic aneurysm information support group

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

"Carpe diem quam minimum credula postero" ( "Seize the day and place no trust in tomorrow!")

I'm an Aortic Dissection survivor! The creation of this Network and Forum is something that has been high on my own personal "Bucket List" after suffering an "Type A acute aortic dissection" in 2003, and surviving a 10 hour operation to replace my ascending and descending aorta and aortic arch with a "Dacron Hemashield Implant" and a St Jude Aortic heart valve graft.

My dacron implant - type A Acute Aortic Dissection with resection and reattachment of aortic arch vessels to dacron graft

"St Jude Mechanical Heart Valve" 27mm aortic heart valve graft.

St Jude Mechanical Valve Graft (*Over 25 years of design performance and over 1.5 million implants worldwide)

Thanks to my WONDERFUL wife, (who REALLY saved my life!) the NHS, SWIFT and CORRECT medical diagnosis and professional attention from Kingston A & E and St Georges Hospital specialist Cardio-Thoracic Department in London with its superb team of surgeons headed up by one of the UK's most brilliant heart surgeons, (Dr Sarsam) not having a bloody clue about the incredible danger I was in and the mortality rate of the operation (25%) until after the operation, (!) a great bunch of friends, a caring local GP (!), my own sense of warped Aussie humour, and a new found wonderment, belief and absolute passion in life itself, I am here today - 9 years after my very own St Georges Day @ St Georges Hospital - April 23rd 2003!

Accordingly I now think the time is right to bring this forum to fruition - as aortic dissection survivors and aortic aneurysm sufferers really should practise 'Carpe Diem' (Literal translation from Latin is: - "Seize the day and place no trust in tomorrow") However - the more general translation I like is: "Live each day like it is the first day of your life - the future is unknowable!"

It's funny how you view life after this experience... Life takes on a whole new urgency and meaning - So go LIVE IT!!!

WHO IS WELCOME?
This social forum has been created primarily for UK and Ireland users who generally are treated under the free UK National Health System (NHS), and European countries also with their subsidised health systems, as well as Australia and NZ with their free Medicare health system. As the UK NHS system and other free health systems are so radically different to the American 'no work, no insurance, no treatment' health system, our information needs and experiences can be quite different to the USA. However, EVERYONE is welcome to our forum - from anywhere in the world. Aortic dissection and aortic aneurysm has no geographic boundaries - and neither do we!

WHAT'S HERE FOR YOU?
AorticDissection.co.uk has a great array of tools for you to use: create your very own PAGE, use the interactive DISCUSSION FORUM to post your thoughts/questions etc, write your own BLOG, post PHOTOS, VIDEO, set up and read about EVENTS, form your own GROUP, write NOTES, and a great new CHAT facility. You can also connect with Twitter, Flickr, Google books and many more new applications due for release in September 2009!

So - today is the first day of our newly minted network support group for aortic dissection (and aortic aneurysm) survivors and sufferers and most importantly - our family and friends. This social network forum has been created to allow members to meet and support each other, share experiences and stories, ask and answer questions, exchange information and ideas, and find out more about life after an aortic dissection or aortic aneurysm diagnosis.

Once the medical professionals have repaired our bodies and worked their magic upon us, we are then bumped out of the 'system' - and if you were/are like me then - scared stiff - with a thousand questions - and no-one to turn to, you need to talk/relate to others who have been through it and can help you. I know I would have given anything to have a support group like this to talk to when it first happened to me. Both physically and mentally you hurt - big time!

Family and friends are great, but try and find out how you handle not being able to sneeze or blow your nose (or laugh - that's not good for me!) for three months with the pain of your chest incision, how to handle this new 'thumping' whooshing and clicking in your chest from your new mechanical heart valve - or the severe night sweats for weeks after your operation, how your partner handles the noise of a mechanical valve clattering and ticking away in the bedroom, how will your new life-long drug regime affect you, (warfarin or coumadin - if you have a mechanical valve implanted) your diet, exercise, can you drink alchohol (I LOVE my red wine!) - and your mortality wake up call - these are just some of the hundreds and hundreds of questions requiring an answer - along with LOADS of reassurance and support.

So we are going to try and do this in this forum. Reach out and help each other. Marvel in our survivor status but most of all - get up off our bums and get on with life!

WARNING!
The purpose of this network forum is NOT to dispense medical advice - Medicine and medical advice MUST be left in the hands of the experts - so under NO circumstances should any advice that is dispensed/found on this network be taken as medically approved. That's what your doctors and medical experts are for!

SO WHAT'S AN AORTIC DISSECTION AND WHY IS IT SUCH A KILLER?
This insidious and deadly condition strikes predominately without warning and affects everyone of all ages from all walks of life. It is however most prevalent in men aged 50-55, with men having aortic dissection more often than women, with a male-to-female ratio from 2:1 to 5:1. The peak age of occurrence of proximal (nearest) dissection is from age 50 -55, with distal (furtherest away) dissection occuring most often between ages 60 and 70. High blood pressure is the most common factor causing dissection and is implicated in approximately 60-75% percent of cases. Aortic diseases are also predisposing factors. These diseases include:
aortic dilation
aortic aneurysm
congenital aortic valve abnormalities
coarctation of the aorta
Marfan syndrome

Most importantly, because of its varying symptoms aortic dissection is VERY difficult to accurately diagnose, and in fact it is often misdiagnosed or just plain undiagnosed until too late, and very often confused with a heart attack.

The aorta is the largest blood vessel in the body and is approximately 2.54 cm (a bit over an inch) in diameter. It originates from the left ventricle of the heart and supplies oxygenated blood to all parts of the body.

Aortic dissection is a tear in the wall of the aorta that allows blood to flow between the layers of the wall of the aorta, forcing the layers apart. If the dissection (tear) rips the aorta completely open (ruptures) through all three layers of the aorta, massive and rapid blood loss occurs with death within minutes.

An aortic dissection is an acute medical emergency and is the most common catastrophe of the aorta. It is 2 to 3 times more common than rupture of the abdominal aorta. If untreated, over 33% of patients die within the first 24 hours, and 50% die within 48 hours. After 2 weeks the mortality rate (death) is 75% - 80% in patients with undiagnosed ascending aortic dissection. The operation to repair an aortic dissection is also extremely complex and has major inherent surgical risks.

Remember vitually the whole of the body's blood supply (10 pints - 5 litres) travels through the aorta in about 60 seconds.

- Think of the wall of the aorta like a car radiator hose, with three layers laminated to each other to contain the pressure of the coolant system in the car. The aorta is also under great pressure (see Video) and once the tear starts and forces blood between the layers of the aorta the pressure of the blood pumped from the heart nearby further forces open the tear between the layers very quickly.

The "US National Library of Medicine" currently states on their website that aortic dissection affects approximately 2 in 10,000 people. Hmmm.... with a population of over 60 million people in the UK - even with my rudimentary math - that's a staggering 12,000 people a year in the UK that it will affect - or over 10 years - 120,000 PEOPLE!

A very good UK centric medical website for a much more detailed background on aortic dissection is "Patient UK"

WHAT IS AN AORTIC ANEURYSM AND WHY IS IT SO DANGEROUS?
An aortic aneurysm is a a general swelling (or ballooning out) of the aorta, usually due to an underlying weakness in the wall of the aorta at the location of the aneurysm. Great advances have been made in recent years with surgical management of aortic aneurysms with stent surgery for life threatening aneurysms. Aortic aneurysms are usually medically managed with close observation, drugs and rest.

An aortic aneurysm (bulge in the wall of the aorta) is NOT to be confused with an aortic dissection (a split in the wall of the aorta.)

Once again, if it ruptures it usually has catastrophic implications. With life threatening aneurysms the procedure is to repair the aneurysm before rupture occurs, using the same sort of repair as an aortic dissection, where the aortic wall (with its attendant bulge) is cut out and replaced by prosthetic graft. Aortic aneurysm occurs anywhere along the length of the aorta but usually before it branches out. Aortic aneurysm in the first part of the aorta (the thoracic (chest) aorta) are usually due to hereditary disease of connective tissue: e.g Marfan's syndrome. Abdominal aortic aneurysm is usually due to degenerative factors (getting old!) however high blood pressure is a known risk.

Approximately 6,000 men a year die from ruptured aortic aneurysms in the UK (accounting for approximately 2% of deaths in men, with women much less affected.) Abdominal aortic aneurysm (AAA) increases rapidly with age after 55 (men) and 70 for women. For thoracic aortic aneurysm (TAA), the average patient age is 60-70 years. Research also shows that the incidence and mortality associated with AAA is increasing. A large Swedish study found that the overall incidence of ruptured AAA has increased from 5.6 per 100,000 person-years between 1971 to 1986 to 10.6 per 100,000 person-years between 2000 and 2004. The biggest increase was in men aged 60-79.

A very good UK centric medical website for a much more detailed background on aortic aneurysm is "Patient UK"

So if you have stumbled upon (or sought out) this site please forgive us as it is in its early days of creation! More to come...much more..very soon!

Next up - My personal aortic dissection story - (lesson - don't be a typical bloke and try and ignore it..it's a LOT worse than a case of bad indigestion!)

Graeme Archer

11 August 2009 (my birthday - 6 years strong now - another year done and dusted!)

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Comment by Cheryl Kerber on January 12, 2011 at 16:31

I just read this(your inaugural post) as I did read your personal story when I first found this site.  You are a phenomenal writer by the way -- don't know why it took me so long to find you, but I see your date as 8/11/09 so that might be part of it - but I obviously wasn't typing in the right google search all of 2010 since it never popped up.

All I could find was the doom gloom sites and I needed more than that and I was actually kind of jealous of my friends who have had cancer because everywhere you turned there was something for cancer patients and survivors.  Now that isn't something I want either and I'm glad they have support  - I had my own brush with the possibility of it not too long ago and decided that my aneurysm was it for me in this life time to deal with.

By the way: I know when I write to this site - I write alot - and I apologize as I think I'm just so overwhelmed at having found it.

Before I found this site, I actually wrote to the Dr. Oz show site (well, their ask a question section - and I don't do that kind of stuff, but I was frustrated at the time because all you hear about is heart disease (like heart attacks, cholesterol), diabetes, and cancer.  There actually are alot of people out there walking around with an undetected aneurysm and it is like a ticking time bomb if not monitored.  But for someone like me, who is just an ordinary person (not a celebrity or "well-known" person) getting the info out there, well,  I wouldn't even have known how to.  Yet here you are - doing exactly what I wished I knew how to do (I'm so not computer/website savvy).

And I wanted to thank you again and "kudos" to you that you accomplished it! 

Please bear with my long windedness comments as it's been building up for 6 years!

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