Tuesday, 9 February 2010

Living with a Mechanical Heart Valve..Click..Whoosh..Thump..LubDub..

OK. Life was not meant to be easy - so they say! The first thing I noticed with my new heart valve (My aortic valve was also shredded during my aortic dissection and had to be replaced (see my earlier blog) after things calmed down and I went home from hospital was the 'whooshing' and 'thump thump thump'/'click click click' noises coming from inside me..

As time progressed and I learnt to live with this (and my wife also!) A lot of information had to be gathered and assessed however on this. And - don't rely on the medical profession for answers! in all my time with this I have never yet met a doctor or medical professional who has had an aortic dissection repair or a heart valve replacement! A heart specialist told me last month during my annual check up that he thought over 10,000 mechanical heart valves a year were implanted in the UK.

I cannot substantiate this but the last figures I could find online from the UK Heart Valve Registry (in 1995!) show 6,000 mechanical valves a year implanted. Fast forward this by 14 years and add the fact that 70 years of age is now the 'new 60' - and many older people are fitter and living a lot longer - 10,000 mechanical valves a year implanted in the UK is quite feasible.

Firstly - the noise. I can only relate to this regarding a mechanical heart valve as that is what I recieved, and from anectdotal evidence and 'rubbery' statistics this is the main valve of choice for heart valve replacement due to its ability to last a lifetime, unlike prosthetic tissue valves which can have a definitive lifespan and could require replacing within the lifetime of the recipient. But - I'm not buying into that argument! For your follow up checks after your operation you are constantly told by the doctors and the booklets etc that you 'will get used to the noise' Nope. Sorry. You dont!

You do however get used to the noise in the daytime but now and again in a quiet room or at my computer I can sometimes hear my heart thumping away -but not ticking! Other's however hear it quite clearly as a ticking. Hey - I can live with that though...it just takes a long long time (years) for you not to get petrified everytime you hear you heart thumping..! Actually I have a theory about the 'thump thump' vibrations I feel in my chest...one that I cannot get confirmed but - I think it is valid - as a couple of friends who are doctors (GP's) privately agree with me.

When you are operated on - especially if it is train wreck like I was - the focus is on getting to the heart immediately and getting the problem fixed. You heart is encased in a tough membrane called the pericardium which holds your heart tightly back towards your spine. It is cut open in the operation to get at the heart. In most cases once your heart is repaired the pericardium is NOT - I think - sewn back up.

It is not actually critical that it repaired (the pericardium) and in some cases people are actually born without it. I believe that without this to hold your heart firmly, your heart moves forward a little against your breastbone and this causes the thumping and vibration that you feel (or at least I do!) But as I said once you get used to it (the thumping) it is not a problem. Anyway that's my theory - and I would LOVE to be proved wrong by a knowledgeable medical expert!

Bed and sleep is the REAL issue. When you lay down - (particulary on your back!) the sound is magnified 10 fold! Thump Thump (!!) (and a LOUD "tick tick" to your partner!) Coupled with that it seems that the noise of the blood flow through the dacron aorta hemishield implant is magnifed as well! Aghh!! In desperation we tried many things, however that did NOT include drinking a bottle of red wine a night - as one husband of a young lady with a mechanical valve told me he did to get to sleep when I was getting a blood test at the hospital!

We finally have a reasonable compromise in that I now sleep nearly always on my side. We purchased a thick memory foam top for the bed which dampens the noise/vibrations. (And yes - we measured the noise before this and the tick/thump did vibrate though the bed!). Finally I sleep with a wheat bag against my chest which muffles the sound - nearly completely.

Maybe others don't have this issue with the noise but if they do - the above works! Other things to watch are that when laying down it is best NOT to put your arms above your head (and especially when standing up as I find this this puts a lot of strain on your new plumbing!) and when getting up in the night - do it sloooowly..as the sudden change in blood pressure with going from horizontal to vertical means your heart has to immediately move up a couple of gears and start pumping a lot harder than it does when your are horizontal and laying down.

Elementary physics - but remember whilst your mechanical valve is a marvel of engineering it is not - and never will be - as good as your late departed real valve! Happy snoozing! Next Up - Living with your Warfarin Regime: INR Levels (International Normalised Ratio) Blood Thinning for your Mechanical Heart Valve...

Graeme Archer
Founder: Mechanical Heart Valve Forum UK

My Aortic Dissection: Acute 'Type A' Aortic Dissection..

I'm an Aortic Dissection survivor!We had moved to the UK from Australia in January 2002 after selling our online travel business in Australia in late 2001 after the effects of the Ansett Airlines failure and the devastating effects of 9/11 on the global travel industy.

With the love of my life, my lovely British wife we had obtained new venture financing in mid 2002 and were deep in building our new online venture throughout late 2002 and 2003. Round about here I will NOT apologise for this long winded ramble - but it's apparently a known (and most remarkable) feature of having an aortic dissection (or just maybe ANY devastating life-critical emergency) that you remember EVERY single detail in excrutiating minutiae. So here you go..!

On an absolutely beautiful spring morning on the 22nd April 2003 - heralding what was to be the hottest summer in 10 years - I was in the kitchen in our flat in leafy Richmond-Upon-Thames in London. I was grabbing a quick late breakfast after working with our coders on a revised design for our new website. My wife ('she!') was also at home having a day off from meetings in the city. As we talked in the kitchen about our business I had just finished wolfing down a boiled egg, tea and toast (..already in training to be a good pom..and it took another 4 years before I ate another boiled egg after this..!) and bent over to put the eggshell into the kitchen tidy-bin.

SmashsssssHHHHH!!!!!! Absolute utter BLINDING pain - NOTHING compares to this..sorry ladies - I know babies and childbirth hurts - but DON'T do this at home (as they say!) to find out which hurts the most!! BRUTAL, GOBSMACKING, GUT-TEARING, eyewatering, whimpering PAIN.. nothing describes it. My chest. I felt as though I had been hit by ... a what???????? I straightened up and she asked if I was ok as my face had gone albino chalk white in the middle of a sentence.

I grunted 'mmmhhhwawwww'.. and sat down on a chair in the kitchen. After a minute or so the pain (on a scale of 1-10) dropped to about 100.. I said (*censored*..)..that hurt..but it's not a heart attack as it ..didn't-feel-like-a-heart-attack-pain..I had been a paramedic in an earlier part of my life and I felt that this was NOT the signs of such.. After a couple of minutes I managed to stand up and then richocheted down the hallway walls to our bedroom to lay down - mumbling that it was probably just REALLY bad indigestion....Laying down didn't work either..then I started dry retching..*expletive deleted* - this HURTS!!!!!!

She then stood at the bedroom door and calmly announced she was going to get the doctor (our doctor's surgery was at the end of our street) to come immediately and see me. I said "your joking - a doctor in London making an emergency home visit - in your dreams hon"....10 minutes later our doctor (whom I had only been to once) was standing at my bedroom door.

Quickly he took my pulse - and then immediately took on the look of a rabbit caught in the headlights of a VERY fast moving Ferrari as he dropped my wrist and reached for his mobile...

First break.
The ambulance arrived in about 10 minutes after he had made an emergency call. After walking down 3 flights of stairs (I insisted - bloody idiot!!) they got me in the back of the ambulance with she in front. After checking BP (40/60?) they immediately also took on 'rabbit type headlight' looks..and whacked a huge 'big- bore' needle and drip into me. 10 minutes later at about 2-30pm I was being wheeled into Kingston Hospital A and E (ER).

After 10 mins or so two male doctors started some tests...and after about 30 mins later the first guesses started.. hmmm... indigestion?.. Ulcer?... Gall stones ... that was the hot diagnosis for about half an hour or so... So then I was wheeled into the BRAND NEW multi-million pound MRI machine only commissisioned a week or so before.

Second Break.After 2 hours or so in there - nothing..nada..zip... By now it was getting on to 10 pm or so. At this stage a most delightful and attactive lady doctor seemed to be the one who had taken charge of my case.

Third Break.I was transferred back to the A and E and 'made comfortable for the night.' 'She' went home about 11pm after being reassured I was comfortable and in no pain..Wheeeeee..morphine is lovely!!! About 11pm ish or so the foxy lady doctor came back and announced she had got the MRI lady back (her friend) and was running some more tests..

4th Break.Back into the whirlygig....after about an hour (?) or so I heard a distinct *expletive* from the nearby control room or thereabouts from my lady doctor.. In a flash she was standing beside me with A MAJOR MAJOR 'rabbit in the Ferrari headlight' look..I said cheerily so 'what's up Doc' to which she replied 'your out of here - NOW!!' I asked what was wrong - Lady doc then replied they had found (just - it was at the very top of the scan and nearly impossible to see) that I had a tear in my aorta (I never heard the word Aortic Dissection until some days after the operation) and that it required emergency surgery.

Breezily again I said 'so.. hmm - so do that here?' To which she said - No - this was a very serious operation and they did not have the facilities. Hah! Understatement of the highest order! Lady Doc then had me rushed back to A & E ward whilst she rang St George Hospital in Tooting, the leading London heart specialist hospital. About now things start to take on a Nicholas Cage movie script 'reality'.

It just so happened that my lady doctor had just finished her internship at another leading London hospital (St Guys) and had worked under/studied with one of the leading specialists in Aortic Dissection in the UK. She knew all about AD and had suspected it right from the start, hence the late night second round of MRI scans she did on me. An interesting addendum to this is that my local doctors partner in Richmond (who had trained at Kingston A & E) also told me a few months later that the Register at Kingston A & E had also had an Aortic Dissection and had trained his A & E staff to recognise the symptoms.

I could not verify this but believe it was/is true. And so this story continues..'Curioser and curioser said Alice'..I cannot swear to this and maybe it was an 'inhouse' urban legend that has crept into the actual events from our subconciousness(es) - however - we believe it is true. Lady doc rang St George to book me in for in for emergency surgery to be told that a fully equipped team that were due to do a quadruple bypass had just been stood down as the recipient's wife had rang in that he had taken a drink or 12 and now could not face up to the op - besides being totally 'off his face'.

They could not only DO my operation, but they already had assembled a crack team that was headed up by Dr Sarsam, probably the most experienced surgeon in the UK and one of the best in the world for Aortic Dissections.

Lady doc then got me ready for the ambulance transfer to St George and called she at home at 4.30am. She then 'piloted' her BMW over the 5 miles from Richmond to Kingston hospital (we later figured out at an average of 90 mph resulting in speed bumps being relocated to about 5 foot under the car) in about 6 minutes, jumping into the ambulance as it pulled out and throwing the keys at a wonderful nurse who kept the parking clampers at bay until it was collected 2 days later.

St George- calm unhurried fuss. White/blue fluorescence. The rapid 'squeak squeak' tattoo of nurses rubber soled shoes on highly polished corridor floors. More 'rabbit in headlight looks' from all the receiving staff. (In retrospect they had the classic 'dead man walking' (laying!) look..Their eyes said it all--"I-hope-he-makes-it-but-I-don't-think- so" look) I remember a series of calm questions from the anatheisologist, signing (sort of) the consent form, trying not to think about dying.. and kissing her goodbye and I'll see you soon..

I woke up many hours later (the operation lasted 10 hours..) at 6pm...wondering when was I going to be operated on..to find myself hooked up to more leads, coloured wires, bleepers, monitors and tubes that a body could possibly have inserted into it. I was then placed into ICU and she came in dressed from head to toe in surgical robes, masks and gloves, as with all my visitors to avoid infection. I was scared witless. Absolutely rigidly buttock-clenchingly scared stiff. And thirsty. Unbelievably, amazingly, Sahara desert survivor thirsty.

Incredibly, my mind was totally alert but of course I could not talk with a ventilator jammed down my throat. I could hear my every breath, the machines whispering and soft beeping, the ventilator sighing and her soft whispers to me... It's all pretty blurry now looking back on this part. She stayed until she fell asleep about 5 the next morning. She had been up since 4am the night before and in the waiting room all day with my son and our best friend Martin - who dropped everything to rush to her side.

On the start of the second day (I think) I got a chest infection and found it harder and harder to breathe, and distinctly remember at one stage ovehearing one of my specialists in the room who was giving me 8 hours at a time survival 'windows'. I thought right - I'm going to get through the next 8 hours. I vowed to myself I was NOT going to die. Not here. Not like this. No way. I then started concentrating on each breath - one by one -take one at a time. Another one. Another one. Another one...How long this went on for I don't know...many hours. But I know that they thought I was NOT going to make it and she was told to prepare for the worst.

On the morning of the third day I had got through and started to breathe properly again..Then - joy oh joy! The ventilator was removed and I could drink some WATER!!!!!!!!!!!!!!!!!!!!!!!! I got better relatively quickly then. Brilliant, compassionate unbelievably caring and professional staff in the ICU. I was then transferred to the high dependance ward and again MORE brilliant nursing and medical attention.

I will NEVER forget my first shower here after the operation. This was better than any luxury you could EVER EVER imagine..Bliss!!! The fact I had to be carried into the shower, sat on a chair and then carried back to my bed was irrelelevant! I also remember friends visiting. Hugs, tears, joyful conversations, love.

Mum and Dad back in Australia had been constantly updated and my Mother had got a call through to me in ICU when I could muster a whisper to her that I loved her. My brothers also. My eldest son Jared was in the UK on a working visa and staying with us and he was a godsend - taking messages, relaying updates on my progress etc. And then I found out what had really happened. Not pretty. Not pretty at all. Pretty bloody ugly as a matter of fact. And frankly if I knew what had really happened to me I think (actually I know!) I might have been so unbelievably frightened that I would not have survived. Ignorance is sometimes bliss.

My life was saved by the shining star who REALLY got me through this - She. My Rock. My Life. My Hero. My Wife.

No it was not indigestion. It was an acute Aortic dissection. I was a 54 year old male. Slim, fit, moderate drinker - no family history of either AD, AA or hypertension. So why? Maybe the strain of being CEO of our previous company during a torrid expansion phase and its fire sale to one of the greatest ******* we ever had the misfortune to do business with, plus starting up a new company on the back of this - played a part with stress. Maybe so. Maybe not. I tend to go with 'FATE' .

I have had a LOT of reflection time in the period after - and have now had over 5 wonderful extra reborn years to also reflect on this. I believe that every person's life is actually pre-ordained and that FATE is what determines our life. Live or Die. It's all mapped out for us by ?? A higher diety? God? Don't waste your life on finding the answer - find yourself instead. Frankly - I take it for what it has given me - a chance to KEEP my life and live every day as it was intended to be lived. and LOVE her - so very much. Always.

In the long painful recovery days and months to follow I found out what Aortic Dissection was and how deadly it is. She also told me the story of what transpired during my operation and why it was fate again (serendipity?) that had had me correctly diagnosed within hours and placed me on the table with Dr Sarsam & the team that I had. After splitting my chest open and opening the peracardium (the tough membrane that surrounds the heart) they found a 'train wreck' inside. 4 pints of blood and more in the peracardium with the aorta dissected from the aortic root to past the aortic arch. After chilling me down to 16 degrees, putting me on the heart bypass machine and stopping my heart they repaired the aorta with a woven Dacron Haemoshield graft including incising (cut out) the aortic arch and suturing it into the new graft. (See my previous blog for diagram)

My heart was then rewarmed and started again. Ooops. Not good. In fact another 'train wreck' - a bit smaller..but just as catastrophic. The aortic valve had been so badly damaged by the dissection that it was totally useless. Out it all came again. What now? - The head theatre nurse was dispatched to talk to she. She was then asked the most dificult question of her life. I was dying.

Time was running out. 6 and half hours and counting on the table. Obviously I could not make this decision as I was a bit preoccupied and had too many bits of me hanging out of me. Priest hovering nearby. Hospital staff moving into support mode for wife of dying husband.

Tick Tock. He's dying! Hurry! There are five categories of valve replacements - human valves (homograft), cow valves, pig valves, mechanical valves and your own valve. Not enough time or workup to an autograft. (own valve) Cow valves, pig valves - last approximately 15 years with replacement then required. Mechanical valves - last a lifetime but require a complex lifelong drug regime (Warfarin -Coumadin) to keep blood thin and valve functioning at optimal performance. Adverse reaction with lots of foods - Vitamin K, E. No contact sport due to risk of injury - there goes skiing and scuba diving. Adverse reaction to most other drugs including most antibiotics. Adverse reaction to ALL drugs for arthritis/rheumatism treatment later in life.
A million questions. Tick Tock. He's dying. Hurry! She chose wisely. 3 and a half hours later and a new mechanical 27 mm St Jude composite valve and graft sutured on to my also new Dacron Haemoshield Aorta Graft (Wow - is that all really inside me!?) and 5 years later - my mechanical valve is going fine, as am I. Yeah - warfarin sucks. But so does being dead. I am still 11.10, reasonably fit (even run now and again - not far - but it's running!) and still have some very good red wine moments..We go out clubbing now and again, dance, laugh, love our friends and family and live life to the full.

Here's the dry clinical summary - (the official surgery report) - if you want to read it. Riveting stuff. It was to me! Work. No more will I go 'a roaming in the gloaming' in the online world. Building new companies and empires doesn't excite me/us anymore. Chasing the 'money monkey' all of a sudden is NOT the coolest game in town. Actually living is. Loving is too. I have a small online marketing consultancy practise and spend some time on a few specialist web sites that we operate. Keeps me happy. Keeps me involved. Keeps me up with the young guns and keeps any sudden onset of Alzheimer's away. Now what did i say again? hah!

So that's the story. Get up off your bum. Believe. Live life like it should be lived. Love life. Love your Life. For you never know.. ;- To quote a good friend: "Life is not measured by the number of breaths we take, but by the moments that take our breath away."

Next Blog. The Recovery. How to LOVE your pillow. Do NOT sneeze, cough, burp or laugh - or even think of f..ting! Night sweats - or how to go through 8 T-shirts in a night. Walking up stairs. Grocery shopping. Lifting. Not. Doctors incredulty - and more - stay tuned! More Blogs to come: Living with a mechanical heart valve and warfarin. The funny and the serious side. Tick Tick. Whoosh Whoosh!

Going back to work after an Aortic Dissection?

Hi everyone! Am getting this quick post up as I have noticed that "going back to work after an aortic dissection" has figured fairly prominently in a few searches on the Google analytics statistics for the site and it is of course - a VERY big deal. OK. Going back to work. I have so many mixed feelings and memories here.

Frankly, in my case it took 3 months just to get my head around what had happened along with the physical healing process. Those 3 months were also spent getting to grips with the new temporary and permanent limitations on my body. As I was/am self employed I did not have a finite time window to get back to work. The next 3 months (after the first 3 months after the event) was the real healing time when I got my body back into an exercise regime, the chest wound had healed, and I was getting used to (sort of!) the 'clicking-whooshing-thumping' in my chest from the artificial heart valve.

Most of all I now felt that I was not going to die.. well not just yet! This was of course the mental healing process- as it was as protracted as the physical process. Apart from my wife - who really knew what this was all about and how it had altered our lives so dramatically, our close friends and family sort of now regarded what happened as very interesting - and I was very lucky - but it was sort of old news...

So what about work colleagues ? - To be honest I did not tell many people I work with the full story - as from my perspective I felt (and still do!) that my 'condition' would put me at a competitive disadvantage in my 'employers' (clients) eyes. (As to our 'condition' that's ANOTHER story - and another blog entry very soon- as I think after we have recovered we do NOT have a 'condition' - but try telling that to a life insurance company - grrrr...!!) Here I might add I am self employed so this was fairly easy to keep to myself)

Personally, I think that 'if' I was not self employed and I was working as an employee, going back to work would have been quite frightening - as well as the thought of keeping working in the years ahead. This is for 2 reasons. The first is that from my experience with the new breed of (mostly self serving and frankly quite ruthless) HR people today in large companies and their total lack of sympathy/understanding - and based on this happening to people mostly over 50 (who are already usually being pushed hard these days into redundancy) this would I think add enormous pressure and worry to you.

Secondly, as we know, worry and stress takes on a whole new meaning after your event. ANY extra stress and worry is an absolute NO-NO. And again that's just not for the immediate period after your event. For me now - that's for the rest of my life - to AVOID stress where ever possible. So if you are worrying about keeping your job - as well as the normal day to day worries that your job throws up - that's a pretty nasty environment to work in. Now - I am NOT SAYING THAT this is the scenario for all AD survivors in the workplace but - It has been a fairly regular background to some of the AD survivors I have been in touch with. Times are tough here in the UK economy and the US, and to a lesser extent in other parts of the world. Also to be blunt, ageism is rife in the workplace.

Age - of course - is one of the determining factors here. If you are younger (under 40(ish!) I think you have a better chance of re-implanting/immersing yourself right back into your work/career without any drama than someone over 50. The other thing is - and I HAVE NOT met anyone who says otherwise - after an AD - and even after the healing process has finished(?) - you NEVER have the energy you had before the event. That - is a very real consideration to take into effect with your return to the work place. I am still a bit of an 'OTT' over-achiever and my work output is still high, however some evenings I am absolutely exhausted - and it's not just about age. So I guess in a round about way this sets up the answer to going back to work after an aortic dissection.

IF you have a great job, a great boss, wonderful work colleagues and an understanding HR section, and you can keep the stress down as much as possible - get back to work as soon as you can - it will be very therapeutic! However this scenario is sadly not usually the case, and as most of us have fairly major financial commitments most of us have to go back to work - whether we have a wonderful work environment or not. If you don't have all the above factors in play (and most of us don't) - a good set of resolutions is to when you get back to work try and take it easy for the first three months - it takes time to get back into the 'hurly burly' of the workplace.

Especially try and avoid stress as much as possible, eat sensibly, keep your work hours to the allotted time (try and avoid overtime!) eat proper meals - including taking time off for lunch(!) and get plenty of sleep. The other option is retirement. It's a VERY big decision and depends entirely on your personal situation - both health wise and with financial independence. However, again, many AD survivors that are older have taken this route seeking to downsize their stress levels and to also increase their quality of life. So when best to go back to work. It's ENTIRELY up to you!

But remember - we have ALL been given a second chance here. Let's NOT waste it buried in our work or in front of a computer. Get up, get out, laugh, hold your loved ones and friends close - and tell them you love them!. Carpe Diem! ps: I would be DELIGHTED to have some discussion on this subject!. It's a many faceted, complex, highly emotive and highly personal issue - but it's why this forum is set up - for us all to help each other with our own experiences and thoughts..so lets hear from you!

"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 - 6 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!!!

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!

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!

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"

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"

If you have stumbled upon (or sought out) this site please forgive us as it is still in its early days of creation! More to come..

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!)

Monday, 8 February 2010

Is the GGG (Giant Genetic Genie) out of the Bottle...?

If you have not read the precursor forum posts to this blog about genetic screening - it would be wise to do so now..as this blog is the continuation - and expansion - and projection - of maybe things to come. Maybe good things to come in relation to screening for AD. Or maybe not. As the 'Genie in the Bottle/Lamp' said.. "Be careful what you wish for"...

The Genetic Test for Aortic Dissection..
We are advocating that we/our families get screened for susceptibility to Aortic Dissection. We know that the University of Texas in conjunction with the John Ritter foundation have developed genetic testing for 'predisposal' (my words) to Aortic Dissection. This genetic test identifies a gene called ACTA2 that appears to be responsible for vascular (blood vessel) disease. The technical name for the mutation is G48V (DNA change G 190T in exon 3). In the case of the gene called ACTA2, mutations may lead to problems in the smooth muscle cells in the walls of blood vessels. When the gene is altered, these muscle cells may not contract as well as they should. Great News! 'My wishes have come true! - Let's go for it' I said. - Get my children and my brothers and sisters screened. Ah! - Be careful of what I wish for ..I might just get it..

The Genie is about to come out of the Bottle..
What happens in the brave new world where/when we can all have genetic screening? Who plays God?. Who lives - who dies? What happens with pregnant women/couples when screening for heriditary diseases? What would happen if their was a definate possiblity that an embryo carried the AD gene - or for that matter any other of hundreds of genetic markers that signalled a genetic train wreck? Who decides what to do. In my case I had a wonderful life (and still do!) prior to my catastrophic AD experience. So what would have happened if when I was in my mothers womb - and my parents had the opportunity to have the test. And then were advised that I carried the AD genetic weakness gene - and decided to pull the plug - and I was aborted? Well, firstly I would not be writing this..! Secondly - I would have missed out on a GREAT LIFE! Thirdly - I might NOT have had my Aortic Dissection. This scenario could also apply for tests for hundreds of other genetic predisposals. For instance - What happens if you were genetically predisposed to Breast Cancer??

The spectre of genetic testing used for employment selection as well as insurance also looms large in other parts of the world, such as Australia -where NO protective legislation exists.

Health Insurance/ Life Insurance and Genetic Testing
Here's some sobering information. US Congress in 2008 passed legislation prohibiting Insurance Companies from asking for genetic tests for any person prior to taking out life or health insurance. However - a grey area.. as they can ask/demand a test (to the best of my knowledge) if you know you have a genetic abnormalty. Again, as I understand it, from the results they can also refuse/lower coverage on health/life Insurance. In the UK we have a similiar situation - but even more of a time bomb. The ABI (Association of British Insurers)moratorium on providing the results of genetic testing for insurance that was in place until 2011 has now been extended to 2014. This enables consumers to take out a MAXIMUM of £500,000 life insurance/£3000.000 critical illness insurance only * without having to disclose adverse results of predictive genetic tests. ( *That's a pretty scary statement...)

So what happens in 2014? I for one - will wager all the fat ducks on my duckpond (30 or more!) that given TODAYS NEWS IN THE UK on genetic testing that the moratorium WILL NOT be continued.

What News?
(Or - Is the Genie about to wriggle out of the Bottle..?)
UK Couples offered Counsyl Gene Tests for 100 Inherited Diseases
The Times; Monday 08 February 2010:

Here's some of the story (truncated):
"British couples are to be offered a groundbreaking genetic test that would virtually eliminate their chances of having a baby with one of more than 100 inherited diseases. The simple saliva test, which identifies whether prospective parents carry genetic mutations that could cause life-threatening disorders such as cystic fibrosis, spinal muscular atrophy or sickle-cell anaemia in their children, is to be launched within weeks in Britain.

However, the test, which is being launched by the Bridge fertility clinic in Central London, is ethically controversial. Critics argue that the diseases it detects are too rare for most people to need screening, and that it will cause needless alarm. It is also likely to raise demand for embryo screening and abortion. There are further concerns about medical supervision. While the Bridge clinic will offer it only in conjunction with genetic counselling, Counsyl,the American company that developed the test, also plans to sell it directly to British customers over the internet, for home use without medical advice. (!!!)

The Counsyl test is a new departure because it screens for multiple conditions simultaneously and is marketed for the general population rather than high-risk groups. It is already offered by several fertility clinics in America.

However Frances Flinter, consultant clinical geneticist at Guy’s and St Thomas’ Hospital, and a member of the Government’s Human Genetics Commission, said the test has an uncomfortable “eugenic flavour”.
“It plays unnecessarily on people’s fears,” she said."
Full story HERE:

So - back to Genetic Testing for AD: Future testing everyone for AD? /Testing AD survivors Families? I am at a cross roads here. Morally, ethically and personally. What do the members of the group think? What is your stance.? I have NEVER taken a stance on pro-life/anti life. I have all my life ducked the moral issue and intended to for the rest of it. However the whole question of genetic screening now concerns me greatly - and not just our small part of the equation. ALL contributions gatefully accepted..

Graeme Archer
Founder: Aortic Dissection Forum UK

Other Supporting Links: