Aortic dissection & aortic aneurysm information support group

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

Hey there,
My name is Richard and am 31 years old. I live and work in Karlsruhe, Germany, but I am originally British. I would like to share my story with you. I apologise for the length... I seem to have an attack of digital diarrhoea...
On the 8th of July 2008 at around about 10 o'clock in the morning I had a type I (ascending and descending) aortic dissection. I had just been up to the 6th floor in the office to the food machine and was sat down at my desk on the 4th floor eating a ham sandwich when I felt this hideously painful sensation run from my heart, up the back of my throat, down my left arm, and down both my left and right legs. The pain is very difficult to describe for those of you reading this that are lucky enough not to have had a dissection, but I guess if you picture that the wall of the aorta is tearing itself apart as it dissects, you would be able to go some way to imagining the pain. The aortic dissection also caused the trunk of my brachiocephalic artery (and right carotid artery), and my left subclavian artery walls to dissect too.
Luckily for me I was at work, because if I was at home I would have gone to bed and tried to sleep it off. My colleague saved my life by marching me off to the works doctor. Maybe I should mention that I work at a site with 2 factories and about 5000 employees - hence the works doctor... When I got the the works doctor I was attached to an ECG and my blood pressure was measured (left only i think 40/10??) and an ambulance was called. The nurses faxed the ECG off to the doctor who was in Mannheim and he had me given 2 aspirin... This was the worst possible thing he could do from the dissection point of view, but due to the dissection my left anterior descending coronary artery was 65% blocked - so maybe it helped stave off cardiac arrest. Anyway - I took my aspirin like a good boy and wondered what on earth was going on inside me. 5 minutes later I heard a siren getting louder and louder until stopping and 30 seconds later a pair of paramedics entered and after looking critically at the ECG and hearing about the aspirin said they had to get me to one of the local hospitals quick sharp. I remember thinking at the time how considerate that they had bought a stretcher with them, because by this time I was so confused by the waves of fear that kept rolling in on me I doubted I would have been able to walk out to the ambulance! Anyway, I was loaded up and then whisked off to the St. Vicentius clinic here in KA for a heart catheter.
I was able to regain a little of my composure during the ambulance ride and I took comfort, probably falsely, in the fact that they were transporting me at what seemed to be close to the speed of sound with all sirens and any other noise making paraphernalia blaring. The reason I took comfort here is because I remember reading somewhere that people who are having heart attacks generally get a nice leisurely ride with no sirens to reduce their stress levels... so, hooray for me I thought, it wasn't a heart attack!
We pulled up outside the hospital and I was taken straight up to the heart catheter facility. There I was relieved of my jeans for a short amount of time whilst someone cut my leg open and fed a tube up inside of one of my blood vessels to my heart. This sensation was the third most painful thing to happen to me on that day. They positioned everything so that they could see what was happening with the coronary vessels and proceeded to inject the contrast medium through the catheter. They couldn't see anything much wrong initially, but they were having difficulty getting the catheter in position for the crucial picture of the aorta...
Once they managed to get the medium into the aorta however, I remember what seemed like a "business as usual" situation degenerated quickly into panicked expressions and frantic telephone calls. It was explained to me that they could see from the catheter that I had an aortic root aneurysm and that they would have to operate on me as it was at risk of rupturing. They were trying to find me a place on an operating table as we spoke. I had still not heard the word dissection, but I had just experienced the fourth most painful thing that happened to me on that day when they whipped out the catheter. Little did I know that the second most painful thing was coming my way when they tried to stem the flow of blood out of the incision where the catheter had been inserted. Apparently blood vessels are very elastic, or they use a slingshot to "shock" them into stopping bleeding... at this point about 25 minutes had passed since that fateful sandwich. Bonus for me: very quick and accurate diagnosis...
I asked a few more questions about the surgery and what was happening and it finally dawned on me that in an hour or so I would be in open heart surgery. Someone came in and said that they had found me a place on an operating table and that the helicopter was on its way across from the another local hospital to take me to the operating hospital. At this point my brain went into overdrive and I suddenly felt so very alone lay there on the catheter table bleeding into my jeans. I asked if it was ok for me to use my mobile phone, which to my surprise it was, I phoned work and let them know what was happening and where I was going, and then I made the hardest phone call I have ever had to make.
"Mum, it's me... I'm currently in hospital after having a heart catheter and they have to operate on me. I am just waiting for the helicopter to get here now... Can you come over? ...I love you...". I do not remember all of the conversation because it was simply too emotional for me. After realising that I would be opened up and that it was a very serious situation I developed an awful fear and the only thing that was permanently going through my head was "this is it" and that somehow the conversation I was having was not how I saw my last phone call being. I remember Mum commenting on the helicopter saying that "it must be serious" and then the next thing I remember is being trollied up to the roof where the helicopter was waiting for me. I tried to play down how serious what was happening to me was on the phone because there wasn't much point everyone worrying about it, especially if they couldn't get a flight over... which it turns out they couldn't on the 8th.
The helicopter ride from Karlsruhe to the Mediclin Herzzentrum Lahr took 20 minutes, I am told. All I remember is being inserted into the helicopter through a tube in the tail, and being extracted in exactly the same way. I cannot remember being wheeled into the hospital, or being prepped for surgery or anaesthetised. In fact, from the extraction from the tail of the helicopter to my next conscious moment I "lost" 6 days.
The operation to repair the aortic aneurysm made everything clear as to the cause - the first time I heard the word dissection was when I was lying in the ICU and the doctor there explained what had happened but not what they had done. I had had a type I aortic dissection of the intima and the media which was caused by the fact that my aortic valve was biscuspid instead of tri-leaflet. This is detectable with a stethoscope apparently, but is never really checked for because, let's face it, who would think of such a thing?
The operation to repair everything took 9.5 hours, of which there were 22 minutes where I was hypothermically placed in a state of circulatory arrest while the heart valve and the mangled aortic arch was replaced - I have a Conduit Medox Model 514/27mm "masher" and a dacron arch. The surgeons had trouble stopping the bleeding (apsirin...) and so pumped a few coagulants in me before they "zipped" me back up. They were apparently not sure I would pull through the surgery until after 9 hours had passed - basically just after they got my heart pumping again after the circulatory arrest.
The coagulants caused the second trauma my body had to endure later on the next day when I had a "massive" stroke. There is no better place on earth to have a stroke than the intensive care unit of a well equipped hospital, so luckily I have no real residual side effects from the stroke, but I look upon it as providence... It certainly was fateful timing, because whilst they were inserting 2 stents in either side of my carotid arteries to keep the blood flow open to my brain they somehow discovered that I was suffering from internal bleeding and they had to open me up for a second time to minimise the damage to my lungs from the pulmonary contusion and also to fix the leak.
The 8th of July was a Tuesday, and I woke up from the coma that I was in on the Sunday. Initially I was shocked because I had a tube down my throat, and I couldn't move, but soon that shock paled in comparison to the shock from the fact that I had lost 6 days of my life. I guess it could have been much worse :)
When your body goes into deep shock your body centralises it's efforts on maintaining the functions of your vital organs - brain, heart, lungs, liver, and kidneys - however, when it gets the feeling it is losing the battle, most of the time the first vital organs it closes down are the kidneys. I was surprised to find out I was on dialysis, although no one else was surprised. I was also very worried about the 4 big tubes coming out of my stomach and disappearing down the side of the bed. I was also concerned that there were 4 strange machines with great big syringes on them attached to a veritable plumber's dream that was hanging out of my neck. However, I couldn't move, let alone talk with a tube down my throat, and I had absolutely no idea what was best for me at that time. So, I just lay there and accepted the situation...
I am told when my parents first saw me after the operation I was attached to 14 different machines, and over the course of the first week I was gradually removed from one after the other, until I was just left on an anti-coagulant infusion drip (I think I started off on 4), an IV antibiotic drip, the ECG, the O2 sensor and the drains (the 4 tubes coming out of my stomach). When I woke up from the coma I remember 8 machines I think, and when I moved to the non-critical ICU I think I was on 4. In the non-critical ICU 2 drains were removed (what a weird feeling that is) and I when I went to the normal ward I was just on one infusion drip and only attached to the ECG whenever I was in my room.
I suppose this is as good a point as any to stop, as the rest of my story concerns itself with the aftermath, the rehabilitation and trying to work off the psychological effects of knowing just how close I came to sitting at the bar in hell... my 22 minutes of clinical death were also quite interesting from a NDE perspective, because I now know a little about the afterlife... no, I didn't see a "God", nor was there a tunnel and a bright light (let's face it... a light in a tunnel is likely to be an oncoming train anyway!) but there was a card shop and 2 doors. Luckily I went out the door I came in...
I hope this hasn't made your eyes bleed, and that I managed to put it across in a clear, and hopefully entertaining way. If anyone wants to talk to me about my experience then feel free to get in touch with me either via this forum, or via Facebook. I only bite, apparently, if you are trying to check that I haven't swallowed my tongue ;)
take care,

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finally got around to reading your story...apart from the 'little' fact of the subject matter - an engrossing and unfortunately all too familiar tale..but full marks to your doctors and the hospital - I am amazed also that you remembered all the machines and the sequence of connection/disconnection ..I laughed at your description of a veritable 'plumbers dream' hanging out of the side of your neck as that I DO clearly remember..all neatly colour coded as well!!...

And as for the 'tunnel of light' and 'white light' etc etc - when they 'make you die' - hmmmm..missed that one too...! Went under on the trolley after 8 seconds and last thought was looking at the nurses face which clearly expressed her opinion of me as 'dead man laying down' (apologies to 'dead man walking'..) to waking up 10 hours later feeling like s**t and Nikki holding my hand and and me wondering 'when were they going to operate'....And yes they were really worried about my kidneys as was the big unknown for 12-18 hours until they started funtioning again..anyway - enough of this! There is more fun things to do on a rainy Sunday afternoon than sit at my computer ..however - We should - and must not - ever forget - we are extremely fortunate/lucky and that the real purpose of us being here is because we were meant to be here for a while yet - and to grab life now and live EVERY DAY to the max!!!

Carpe Diem!

Graeme Archer
All I can think to say is, "Wow... 31!" So glad for your recovery. Do you have siblings? If so, what precautions are they taking?
"luckily" i am an only child so there are no siblings to worry about. my direct family and their offspring (uncles, aunts, my cousins) have been checked for a bicuspid aortic valve and they have come up negative - as have my parents. i guess i should be looking at this acta-2 genetic thing too, but as of yet haven't got round to looking deeper into the testing possibilities...
Hi Richard D

I logged on Sunday to see if there was anything new and spotted your discussion piece I began to read, from the heading I didn’t think you were actual going to put your experiences in to words, but was so glad you did as I have been waiting to read your story, ever since I started to participate on this site, You have given hints but wow what a fantastic, amazing story, what personal inner strength and survival instinct you must have I am in awe!

Reading your experiences, or anyone’s for that matter , shoots me back to that moment and I’ll happily admit that if my curiosity and need to know wasn’t quite as honed as it is I would never read one again, but that’s not me .

Richard I salute you, to go through what you have and come out the other side with such a positive and caring attitude is heroic, and writing it down was certainly part of my healing process, so don’t be too long before you write about those early months of recovery, I think those are the ones that really help people when they come to this site. Surgeons are wonderful but when they have fixed you up they say goodbye and haven’t you done well, then it’s your time to take responsibility for your recovery, and no one prepares you for that!

Thank you for sharing it was a privilege
Marion x
hey marion,
thanks for the kind words!
there have been quite a few remarkable stories posted here, including yours, so my story in the context of the group is fairly run-of-the-mill! luckily for me relatively minor things went wrong (considering the possibilities) and in putting them right much bigger issues were detected and rectified.
every twinge, every time i get off the cross trainer after a particularly trying run, every time i wash my chest in the shower, every time my heart pumps thinned blood to my inner ear i am reminded how hard other people worked to keep me here and how difficult it was for the people who care about me to watch me for those first few weeks. when i look at it like that, then life really isn't difficult to get through and i somehow manage to stave off the depression. the feeling that the one thing in me that i should have been able to trust 110% let me down (albeit once) still plays on my mind and every now and then my body seems to take the wind out my psychological sails, but what is recovery if not a test of wills... after all that has happened to me there is no way i am gonna waste my "reclaimed" time sitting around feeling sorry for myself. graham likes his phrase "carpe diem quam minimum credula postero" (enjoy the day, placing little trust in tomorrow), i prefer "si post fata venit gloria, non propero" (if glory only comes after death, then i'd rather wait...)
take care ;)
It seems I can't read through any of these stories without shedding tears. I luckily or unluckily don't remember any of my stay in ICU, my first memory is waking up already in my hospital room and seeing my newborn daughter for the first time(one of the cardiac nurses was kind enough to leave it for me) and sitting in a chair in my room was the resident I saw when I first entered the ER. Luckily I had a kind enough doctor that allowed me to go go two floors up to see my little girl in the NICU a few days later.
i am closing this one as i have moved it into the blog section where it belongs. any more comments will have to be added there ;)
link is here!



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