Aortic dissection & aortic aneurysm information support group

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

My Story..22 April 2003 - No - it was NOT just bad indigestion...!!

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 Nikki 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 (MRI) ....and after about another hour (?) or so I heard a distinct MAJOR set of *expletives* 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.
5TH AND MOST IMPORTANT BREAK!

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/am slim, fit, moderate drinker - no family history of either AD, AA or hypertension. So why me? 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.... As they say..'merde' happens.. and it happened to me..big time!

I tend to go with 'FATE' . I have had a LOT of reflection time in the period after - and have now had over 10 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 difficult 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 now 12 years later (2015) - 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.

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 travel and tourism 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."

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 ...!

Update October 2015: (Late - but interesting...)

Hmmm....A few months ago now my own heart specialist decided to get a full 3D scan done of my circulatory system using 3d tomography and radioactive dye at St Guys with a leading London specialist in this area, as technology had moved on so much since 2003 when I dissected, especially in 3D scanning which was not invented back in 2003... Imagine my - and my local specialists gobsmacking suprise to get the results to find out that I had also dissected (presumably at the same time as the initial dissection) all the way down to my illiac arteries (top of both legs) and that I now also had my left kidney being fed entirely off the false lumen in the dissection - so I had suffered a complete Debakey 1 Dissection down to the Illiac arteries instead of 'just' a Debakey II back in 2003!!

SO SO glad I think I did not know that or the operating team did not know it either at the time of my Type A operation back in 2003 replacing the aorta and 'just' the Aortic arch as my specialist said 'they probably would have given up on you as inoperable, sedated you and waited for you to die. Huh!!??  So how did I survive?? It seems that body is incredibly resilient and because it would have been impossible to mend anyway (The full Type II dissection) the split in the aorta (false lumen) actually healed itself (as much as it could) and now I sorta have 2 aortas running in parallel down to my Illiac arteries..

Further Update: July -March 2015 and to October 2015 (Present) Prostate Cancer diagnosis and treatment..
Well, as I now have had 6 months of positive (good positive!) test results from my quite nasty diagnosis (and extensive radiation treatment) for prostate cancer back in late 2014 finishing in Feb 2015 I am happy to report that I seem to have got through this as well.. Well. As they say. Never a dull moment! Also interesting treatment regime for a full blown AD survivor given surgery was deemed too risky. So if anyone wants feedback on prostate cancer treatment and are carrying a full blown AD.. Let me know! Suffice to say its a pretty rigorous treatment regime over 3 months of daily radiation and its not without some nasty side effects but now, 8 months on after finishing the treatment and 6 months of clear test results .. life has got back to.. sort of normal.. (for us in the AD tribe anyway!) And again, of course, my wife, my rock - my star was there 24/7 to back it all up for me.. Love you hon! And. Live life. Love Life. Kick its bum to the max! As evidenced again in the last 12 months, you just don't know what's around the corner and with great respect.. this is not a dress rehearsal for the next one! Go live it to the max!! Now!              
 
So, stay tuned for another new chapter with the MHV and AD sites! :-) 

More Blogs to come:
Living with a mechanical heart valve and warfarin. The funny and the serious side. Tick. Thump. Whoosh!

Graeme Archer

(** Latest Update October 2015..)


Original Blog Date: 23 August 2009

(Our wedding Anniversary!)

Views: 1305

Tags: a, aorta, aortic, archer, dissection, graeme, heart, mechanical, my, story, More…type, valve

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Comment by Kev A on May 31, 2011 at 21:50

Hi Graeme

 

Wow - it's amazing what can happen in a few hours isn't it!?  And then the subsequent path(s) we take once in hospital(s).  Apart from the obvious, it makes us appreciate the smaller things in life too, like WATER!

 

I hope this doesn't come across a bit 'crass' but I've 'enjoyed' reading your story a few times now.  OK enjoyed is perhaps the wrong word given the subject but I'm sure you know what I mean by that.

The reason being no doubt is that I can relate to so much within your story, esp bits like water! 

Memory too - I remember everything from then to now - incl total memory melt down.  It’s just amazing when you put it all together isn’t it?

Did you have to suffer days on ‘full face’ breathing masks?  These were awful for me.

 

Anyway, thanks for everything here and the great story with the even better ending.  Story/8 yrs/Site - Inspirational to all

Thanks  

Comment by Graeme on April 29, 2011 at 7:29

Thanks for the comment Benjamin, we really do try and let the members speak for themselves - the site is as you said not about 'sugar coated' candy nor heavy gravitas nor medical do's and donts..it's for US, by US, and about US...

 

cheers

 

Graeme 

Comment by Benjamin J. Carey on April 29, 2011 at 2:31
You told that story very well Graeme. I really enjoyed reading it, and I enjoyed your writing style. I identified with so many feelings and remember so many of the same circumstances in my own story. The main difference in my own ordeal is that they found my aortic aneurysm before it dissected. I was a specimen of health and went into complete denial about the whole thing, trying to find anyone or anything that would tell me I didn't need surgery. My stubbornness and fear almost caused my demise. In retrospect I am grateful to be alive, and I want to help others understand that you can get through this, and you can live more than you ever imagined afterwards. During my recovery, I was so moved by the ordeal that I started a similar site called Heartosaurus.com. I also ran the NYC Marathon on the one year anniversary of my heart surgery, and ended up writing a book called "Barefoot in November" about my whole experience. I love this site you created. It's the first one i've come across that has similar qualities to mine, and you can be sure i'll be back as well as recommend it to my own sphere of influence. There are a lot of sites out there with good clinical information and advice; but not many like ours where there is no filter; it's just complete emotion; the truth about everything with no candy coating. Your story was exactly that; and I enjoyed it. I however included the "expletives" in my book -- maybe it's a New Yorker thing :) Anyway, great story, and great site you started that will touch people going through the same thing; and as you alluded to at the end of your story; it will inspire them to really get out there and live life; be a player in it, not a spectator!
Regards,
Benjamin
Comment by Graeme on September 20, 2010 at 8:36
Hey Kimberlee,

thank you very much for your lovely comments..Yes I still read my story every 6 months or so when I feel a bit low and it truly gets me right back up again..and feeling how lucky I am to have what I have and to have triumphed...as we all have who made it through! You take care - you are a special person!

stay safe and well..

bestest

Graeme
Comment by Kimberlee Jones on September 18, 2010 at 17:06
How I missed this story when I joined I will never know! I'm so happy came to do some browsing around today. What I triumphant story. It brought tears to my eyes. Without this site I think I may have lost my mind. You never know how important it is to not be the only one. To talk to someone who understands. Before my dissections I never would have imagined that I would need people/strangers so much. It really is hard to explain what happens to a person not only physically but mentally and emotionally, having others who already know/understand has made not only recovery but living with my dissections so much more....well liveable.
Comment by Graeme on October 24, 2009 at 10:15
Julie
Thank you for your lovely compliment but it is all of us that are going to make this work by us all supporting each other - your husband, yourself, your family, and all the other people and familes that this insidious disease has wreaked such havoc on!

Wiht kindest best wishes for a quick recovery to your husband..

Graeme
Comment by Julie Blume Benedict on October 24, 2009 at 0:26
My husband (who is 43) had the same thing you did two weeks ago (also with no genetic or risk factors) and is recovering well. I can tell already that you are a godsend, Graeme. This is such a rare condition and finding someone who even knows what it is and understands the complete madness of it all is such a relief. THANK YOU!
Comment by Julie on October 21, 2009 at 19:12
Wow. That part about your infection and how you focused on each and every breath and willed yourself to pull through it was really touching!
Comment by lewis d hansel on August 29, 2009 at 17:56
wow!!!! have i got a very similar story for you i will try to start my own thread as to this is a long story like your own and is very specific
Comment by Richard Johnson on August 25, 2009 at 20:35
I got in after the third try (had to avoid all that Http// stuff) Your story is impressive. My wife's story is somewhat similar (she is the one with the dissection). I will see If I can import her story from my blog (www.three-score-and-ten-ormore.blogspot.com ). We had gone to Finland for a week at the end of August, staying in a Timeshare when she woke up screaming in the middle of the night. The result was somewhat like yours though she was kept unconscious and "unclosed' for awhile. We went home from Finland in November. After we had been here (USA) for almost a year she was diagnosed with another aorticdissection reaching almost the entire length of her discending aorta. They planned, at first to do some kind of "relining" of the aorta, but have withdrawn from that procedure and are "keeping track" of its progress at the current time.

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