If you want to know about Aortic Dissections then read on. If you are only interested in life after a dissection go to the last few paragraphs.
Some back story before I start and feebly attempt to describe what an aortic dissection is. If you already know then you’re in the minority and either survived a dissection, know one or lost someone from a dissection.
An apology up front
This post is longer than I’d hoped but it’s necessary to explain a dissection before describing my life after. Stick with it if you can.
Before moving to Western Australia we lived on the South Coast of NSW in a small town called Narooma. We loved living there, and if I’m honest with myself, I miss it and the people terribly.
Narooma is important in this story because it has no hospital, therefore life threatening emergencies aren’t recommended. It is the price you pay for living in heaven. There is however an excellent ambulance Service which can get you to Moruya Hospital fast. It’s about a 40 minute trip on a good day.
I’m don’t call an ambulance unless it’s really serious and I mean really f*&king serious. I need to have lost an arm or leg or my ass fallen off before I’d pick up the phone. Now that I think about it, I have never actually called an ambulance.
About 10 years ago, in Narooma, I suffered a heart attack and rather than calling an ambulance I put up with the pain hoping it would go away. I didn’t want to bother local ambulances just in case it was nothing. When the pain didn’t go away I got in the car and drove myself to the ambulance Station and said “umm, I might have a problem here”. They ran somes tests and said “shit bro, we’re taking you to hospital because you’re having a heart attack”. Bugger… I had other things to do that day!
Jump forward a couple of years and I get a phone call from my brother asking “will you move to Perth because I need help with my family business?” to which I replied “no thanks mate, we really love it here and we have such excellent friends”. But he didn’t give up and called a few times each month trying to convince us to migrate east to west. About 12 months later we finally gave in and said “Ok, but just for five years, then we’ll come back”.
So we got rid of most of our belongings and headed west on a new adventure! A decision that ultimately saved my life when my dissection occurred. You see, I’m not sure Moruya hospital would have picked up an Aortic Dissection and I would have likely died. Having said that, I mean no disrespect to the hospital or any staff. They all do a brilliant job with limited resources. But equipment at small country hospitals is sometimes lacking.
WTF is an Aortic Dissection
Quite simply put, an Aortic Dissection is a tear in your Aorta causing a separation between the layers holding it together. Without treatment it will rupture and you just fall down dead – there is no coming back from a rupture.
Your Aorta is the large blood vessel coming up out of your heart. It feeds everything with oxygenated blood, and when I say everything I mean everything! Brain, spine, legs, arms, bum, dangly bits, kidneys, liver – everything. It endures enormous pressure, far more than other vessels & organs and is therefore reinforced with multiple layers. It rises up from your heart then does a u-turn down into your abdomen until it branches off into your legs via your femoral arteries (one in each leg). The u-turn is called the Arch which feeds your brain via your Carotid Arteries. The uphill bit is the Ascending Aorta, the downhill bit is the Descending Aorta. The point at which it branches into your legs is called Bifurcation.
Dissections usually occur somewhere on the arch, either in the ascending or descending bit where pressure & speed of the blood-flow are greatest. A tear of the inner layer causes blood to flow between it and the next layer forcing the layers to separate. The separation zone may be a few centimetres long or much larger. In my case it went from the top of the arch right down to where the aorta branches off into my legs. The high pressure blood digs a channel downwards. If the outer layer doesn’t maintain integrity from the onslaught of blood then it ruptures and it’s R.I.P you.
Symptoms as it occurs
It is very painful and it’s onset is sudden. There are no warning signs giving you a clue about what is coming. I felt an incredible pain in my back between my shoulder blades. Immediately felt nauseous followed quickly by a cold sweat. My legs wouldn’t work properly. Walking was very difficult as a flap had formed reducing blood flow to my legs. Having had two previous heart attacks I concluded this was probably the big one. Pain radiated around the left side of my upper half into my chest and I had to sit down before it knocked me down. I quickly opened up my Email and sent a quick note to my wife that simply read “Whatever happens, remember I love you“.
After 20 or 30 minutes the pain started to subside and the sweating eased. I packed up my stuff (I was alone at work) and staggered to the car. Then drove from Wangarra (north Perth) into Osborne Park (the middle of Perth) to pick my wife up from work. Still feeling unwell and there was a constant pulsating sensation in my chest and abdomen – I could see the stomach area pulsating constantly with each heart beat.
Not wanting to worry the wife I chose not to mention it (just in case it went away) and we headed home to Ridgewood (north Perth). After a few hours of discomfort I finally had to admit defeat and said “Something is wrong, we should get to the hospital”. She knows if I suggest the emergency department something is seriously wrong with me.
It took them nearly 16 hours to correctly diagnose me. Once the penny dropped they went into overdrive and got an Ambulance to rush me to Sir Charles Gairdner Hospital. The 16 hours prior to my ambulance ride saw them just filling me with morphine and allowing my blood pressure to remained out of control. Symptoms can present as heart attacks and is generally treated as such because many doctors wont consider a dissection because it is rare, particularly someone in their 40’s. There have been cases of people suffering, and dying from, dissections in their teens.
Dissections run in my family and killed my father & grandfather. I pointed this out at Joondalup Health Campus but it was ignored. The morning shift started and a clever nurse asked “why haven’t these boof-heads sorted out this mans blood pressure?” She called a cardio thoracic guy and he ordered CT Scans. The penny was in the air about to drop. Bingo! I was suddenly the centre of their attentions and the cardio thoracic guy said “F&#k me… get this man to charlies right now!”. So a big thank you to the clever nurse and cardio thoracic guy for figuring it out.
The stats on dissections aren’t good and 40% are likely to die before arriving at the hospital . There is a 2% mortality rate every hour for the next 48 hours. Many wouldn’t even get out of their homes if their dissection ruptured. Aortic Dissections occur in about 1 in 10,000 people so they aren’t an every day thing.
Yippee, sirens & lights
The ambulance ride started out leisurely enough but I deteriorated and the lights & siren went on and we took off at ludicrous speed. My wife and sister in-law were behind us, so that sudden change in speed worried them a bit. A fast ride in an ambulance with two nurses and two ambulance officers. An all female team! Imagine my surprise when I found out a “woman” could actually drive properly – it’s unheard of.
My apologies to Doctors & Nurses dealing with me – I was a dick!
Dissections are easily treated once identified but I made it difficult for them. You see, have am ENORMOUS problem with needles – they scare sh#t out of me! I can’t even watch someone on TV get a needle – it freaks me out! Ever since I was a kid, I’ve been jabbed with needles to the point where my ass look like a pincushion. I had heart surgery back in 1969 at age six and was an easy target for bastard doctors looking to stab innocent children! I was in and out of hospitals stabbed on a regular basis.
So when I arrived at Sir. Charles Gairdner Hospital another bastard doctor said “let’s put in a central-line” which didn’t impress me much. I should point out my bad behaviour at the time was a result of being off my head on morphine! Each time they put a central-line in I pulled it back out. That didn’t impress them so we were even. Eventually they had to knock me out just to treat me.
I was placed into a medically induced coma for a few days which I enjoyed very much. I thoroughly recommend it and I’ll write about that in another blog post. They chucked me into intensive care unit and stabilised my blood pressure before being operated on. Whilst in my coma I suffered two small strokes and multiple bleeds on the brain, more on that later.
Some dissection survivors regain much of their previous life while others do not. In my case, if I had to assign a percentage, I’d say I’m about 50% of what I was. I get tired quickly and am often out of breath. When I raise my arms into the air and tilt my head up I begin to pass out. That is probably unique to me because my heart valves leak & arteries feeding my brain are partially blocked by a stent.
I take eight tablets per day including 300 milligrams of Metoprolol which is quite a high dose. Pharmacists often question me about it, and I explain why it’s needed to slow my heart rate. No matter what I do or how I exert myself my heart rate hovers around 60 beats per minute. When my body demands more blood-flow & oxygen to feed muscles my hearts says “bugger off, I’m doing 60 and that’s all you’re getting”.
Adrenaline is a problem too and Metoprolol prevents it reaching my heart. I do not get that “fight or flee” sensation when something scares the crap out of me. Things still startle me but my reaction isn’t as you would expect – there is simply nothing going on in there. I only need to be two hours overdue for my medication and I start to feel terrible. The heart rate increases, the adrenaline starts getting through and it’s not a nice feeling.My blood pressure is now all over the place. You cannot get a reliable reading from my left arm. The gap between systolic & diastolic is growing. A normal BP is around 120/80 whereas mine might be 140/48 one day and 135/60 the next. On average it’s 135/55 and the worst was around 163/45. On one occasion it was 98/58. I have mentioned these bizarre numbers to my vascular surgeon and doctors but they don’t seem concerned, therefore I’m not.Where am I at nowMy dissection occurred at age 48 and I’m now 55. Seven years on and I’ve been had to retired from the workforce. My wife said “I’d rather have you than the money you bring in”. She supports me and keeps a roof over my head. She really is a wonderful woman! I stay at home, do all housework and cooking as well as taking care of our pet rabbits (Gary & Molly). I can’t do much around the yard and I’m worn out most of the time, but still alive for the moment. To be honest, I’m surprised I’m still here and haven’t fallen off my perch already. I’ve got my “last words” ready for my beautiful wife if there’s time as I fall to the ground.
Medical Follow Ups
Every six to 12 months a CT Scan, visits to my vascular surgeon as well as regular checkups with my General Practitioner. My GP was a bit excited when we first me. She said “Never met a living dissection patient”, and “you’re more interesting than the usual uncontrollable farts & sniffles I see”.
One advantage I’ve discovered is that should I need to visit an emergency department I don’t have to wait. When I mention I’ve had an Aortic Dissection they hustle me through the doors and straight into a resuscitation room. I don’t visit the ED unless it’s really necessary. I don’t want to waste their time if it turns out to be nothing. I’ve had to see them a couple of times when chest pains continue longer than I’d like. Knowing I don’t have to wait for hours is comforting.
After the two small strokes while in a coma there have been minor changes in my personality, according to my wife. The doctors told her “he may not be the same person when he wakes up” but thankfully I almost am. My “Verbal Filter” is buggered. She tells me I don’t filter what I say to people and tend to speak-up about things I previously would not have. For example, if someone is a bit overweight I’m likely to point it out. Prior to my dissection I’d never have said anything potentially hurtful to anyone. Now my big mouth starts flapping before my brain can shut it. I don’t mean to be a dick, it just happens. I’m aware of it and am trying to fix it.
The personality changes and some numbness on my left hand and feet are the only adverse effect of the strokes. The positive change in me is my eagerness to cook & clean. There was a time when I’d moan about cleaning, vacuuming, dusting or anything to do with housework. Now I’m likely to get up from my chair for no apparent reason and start sweeping, floor washing, kitchen cleaning, vacuuming etc. That’s a bonus, right?
If you got this far – GOOD WORK! There is much more to say about my dissection but there isn’t enough space on the Internet. Keep an eye out for my life in a coma.