Aortic dissection – the angst and exhaustion

After a six-hour surgery for aortic dissection came six days in an induced coma. Then came the task of bringing body and mind back together. This is Jenny’s story in her own words.

For some reason, I feel the need to write this.

Why? Partly, I think it’s because, as I become really well again, I am forgetting what happened to me. Occasionally something pops up which reminds me of how fragile I was in the beginning.

Also, I sense I was a burden for my family and friends and doctor as I sorted myself out, and I want to give some people some sort of explanation as to why I was like that.

I know they will all dispute that I was ever a burden, but believe me, I was. And for a fiercely independent person like myself, it doesn't sit easily to be a burden. My husband and sons were my rocks as I came to terms with things. After a double mastectomy eight or nine years ago, I was back on board very quickly and feeling psychologically strong, but my heart experience was a different story.

"Family were given the news that, if and when I came out of the coma, I may be brain-damaged."

So, what exactly happened? Here it goes...

April 3 (Good Friday) 2015, I was having a relaxing morning at home with my husband. I had used the bread-maker to prepare some hot cross buns, so I was not exerting myself in any way. Then I remember a sudden ripping sensation down my heart side, but I don't remember any pain associated with it. I was sinking down and felt all ‘power’ going out of my body.

My husband was just in the room beside me and I said to him, “This is serious – you’d better ring Dil's Funeral Services.” That was my memory playing tricks. What I actually said, according to him, was “this is serious - you'd better dial 111.”

After that, I have no further memories at all, although my husband assures me I was responding to questions and comments right up until I went into the operating theatre.

Q: “What is your pain on a scale of 1-10?”

Me: “10.”

Then, my son, as I was being wheeled into theatre: “I love you, Mum.”

Me: (very off-handedly under the circumstances): “I know, son.”

“My aorta had dissected”

I am actually grateful for having no memory of the pain, but wish I knew first-hand what had been happening at that time. My aorta had dissected from next to the heart (Type A) right down to the iliacs (Type B).

I am now gleaning from family and friends’ comments a bit more of what happened...

The ambulance took me to North Shore Hospital where a wonderful A&E doctor quickly spotted that there was something wrong and that this was not a heart attack.

She had an ultrasound taken there and then, and immediately started organising for an ambulance to take me directly to the cardiothoracic operating suite in Auckland Hospital. She organised the surgeon she wanted there to operate on me and she and the head nurse came with me by ambulance to manage my blood pressure and whatever else they did which kept me alive.

I will be eternally grateful to her for saving my life from a situation which often happens away from medical care or is often misdiagnosed and which often causes death unless operated on immediately. I will also always be grateful to my surgeon and his wonderful skills.

Angst for the family

My poor family were then advised to go home and wait till surgery was over. They were the ones who suffered the angst, angst, angst. The op took six hours and the doctor rang at 9pm to say it had “gone well”.

Then was the wait for me to come out of the induced coma six days later. For the family there were consults with doctors at Auckland and letters explaining what was happening over the next days that I remained in a coma “too unwell to be woken up”.

Then family were given the news that, if and when I came out of the coma, I may be brain-damaged; my kidneys may also be damaged and I would need dialysis for the rest of my life, etc. During events like mine, the organs are starved of oxygen and can die off in part.

After six or seven days, I come back to the real world.

My first recollection is my six-month-old granddaughter beaming in my face (she wasn't at all scared of the face with all these contraptions coming out of it), then my sons and my daughter-in-law, all there at my bedside.

Someone, maybe a nurse, commented that I wasn't brain-damaged because I had recognised them. There was no thinking “Where am I? What happened to me? Why me?” I think I was still so drugged that I just accepted I was well again, no questions asked.

But I was far from well. After those six days, I was shifted into the ordinary ICU ward.

“On another planet” following coma

My memories from here on cannot be truly chronological. I was 'on another planet' for a few days/weeks – who knows.

The other day I read a post by a young woman whose father had had a very similar experience and operation as mine. She said he had now come out of the coma, but that he seemed frustrated because he couldn't communicate due to the apparatus down his trachea to breathe for him.

It suddenly reminded me of being in the same situation and my sons helping me to communicate by sounding out a, b, c etc until I nodded and they knew that was the first letter of the word I wanted to communicate, then the second, then the third, and so on. Long and laborious.

They also had a big sheet of the alphabet written out for me to point to the letters one at a time to create words. The problem with this was I was so weak and uncoordinated that I couldn't 'hit' the letters I wanted with accuracy, and their interpretations of what I was spelling out was often far from the mark.

I was very frustrated and tried to sign language to the nursing staff that I really wanted the breathing tubes taken out. They were concerned that I would not be able to breathe at all without it as my lungs had been compromised.

Eventually, they agreed to take the breathing tubes out and I was determined to breathe deeply by myself so they wouldn't have to go back in.

I found it hard to swallow anything other than very soft liquidy stuff for a long while. I couldn't talk much or put any strength in my voice for a long while.

I had NO strength (couldn't lift a pillow) and NO coordination (I couldn't manage to pick up a glass to drink – had to have a plastic sipper bottle which didn't break or spill if I knocked it over).

I couldn't feed myself. Food would just fall off my spoon while I was trying to manouevre it to my mouth which I usually couldn't find. My eyes kept seeing things that weren't there, and not seeing things that were there. I was catheterised. Obviously, I couldn't walk. I couldn't even roll myself over in bed. I couldn't sit myself up.

As if that wasn’t enough, I was reliving some pretty heavy, weird hallucinations. I had been convinced that, before coming into the regular ICU, they had been trying to kill me. I could tell some weird stories about what doctors and nurses did.

When I was finally talking and I challenged one of my sons about something I thought he had done, he and my husband put two and two together and told me I must have been hallucinating when I ‘experienced’ some of those things. Of course they were right.

The staff were very caring and patient at all times but the physio was a little too demanding when I was learning to walk again. I felt like half of my head was missing and my legs were jelly that wouldn't cooperate with my brain and she kept changing the goal posts, demanding more and more, even when I felt really unwell because of fibrillation.

Several days after surgery, the surgeon asked me if I remembered him. I think I assured him that I hadn't had an operation (what was he thinking?). I was totally unaware of the long row of staples and I had no chest pain. But then, my memory of him asking me this question was when we were both waiting in the queue to buy sandwiches at the cafeteria. Of course, I was never in any queue like that.

The gradual recovery begins

Three weeks or so were now spent just getting body and mind together. Then I was discharged to North Shore Hospital.

Fortunately the cardio ward took me in and I gradually got better at walking with a walker, then without a walker. I managed to shower myself. When I could show the physio that I could make a cup of tea for myself, I was allowed to go home.

The ride down Shakespeare Road in the car was surreal.

I was very wobbly but managed to get from bed to the bathroom and back when I needed to by myself. Then managed to do more and more walking, at first up and down the hall, then around the house outside, then up the road and back.

All of this was extremely exhausting. Visitors would come and I would get very tired very quickly. Exhaustion. Exhaustion. Exhaustion.

In the next few months, every little thing severely set me back in the energy stakes. Cellulitis and the antibiotics I needed; urinary tract infections and the antibiotics I needed – all took their toll.

I found eating very difficult and could only manage mushy food with distaste. I suffered from nauseating weakness for a long while. Depression was a problem. Digestion was a problem.

Back to life

But eventually things have all come right. I don't think there is any brain damage or kidney damage, though I still have an annoying cough.

But I walk on the beach, travel, go to exercise classes, socialise. I thought in the early days I would NEVER get back to real life like this.

On the recommendation of a fellow aortic dissection survivor in Canada, I joined a Facebook support page which has been a real strength and has taught me so much about my own condition.

At this point I feel as well as I have ever felt and have no difficulty writing off these past experiences as just a brief bad dream that goes as soon as you wake up. But I know they were serious and shouldn’t be just written off.

 

Shared July 2016

Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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7 Comments

  • Malory 22 March 2019

    Thank you Jenny for describing your experience so well - both in terms of the trauma of the dissection and the operation, and also your physical weakness and recovery afterwards. It all sounds very familiar, and it is so helpful to read of someone else’s experience.

    I had an aortic dissection in January this year (2019), so it is still very fresh and and I am still very much trying to come to terms with it. One thing that I find strangest about the event is the intense series of (what feel like) real experiences that happened around the operation - what have been described to me as ‘post operative delirium’ - these sound a lot like your hallucinations. I have written about them here: https://medium.com/@malorynye/staying-alive-nothing-breaks-like-a-heart-42b8c153bac8

    It is now just over two months since it happened, and I am very grateful to the excellent surgical team at Edinburgh Royal Infirmary (in Scotland) who literally saved my life. It will be a long process of recovery, both physically and in so many other ways.

  • Becky 25 February 2019

    My husband just went through an emergency aortic dissection on February 20, 2019. Thank you for sharing your story because he was fairly alert when he first came out of anesthesia but has decreased in the last three days. Your story gave me hope that with love, time and patience he will be himself again.

  • Joan 8 February 2019

    My husband had thoracic aortic dissection dec7th 2018.since then had only 1 wk out of hospital due to infection behind breast bone which is being treated with 6wks iv .now 4 wks and not completely cleared .has anyone else had infections after dissection

  • Archie 21 June 2018

    Thanks for sharing your story Jenny! It has given me strength and definitely patience to be with my husband’s pain who suffered from aortic dissection in Jan 2018 and was in Comatose post surgery and is still recovering.

  • Angela 18 April 2018

    Thank you Jenny for sharing.  I have felt alone in my journey since my aortic dissection July 2013 at 40 years old.  I’m inspired to tell my story.  May we all continue to strive for the health and wellbeing that nurtures, forgives, heals and brings joy to our spirit, mind and body.

  • Jenny 13 February 2018

    Thanks for your comment, Kathleen. I am glad it was helpful. If you want to make contact, please do.

  • Kathleen 12 February 2018

    Thank you to Jenny for her story which kept me going during 2017 when I felt like I was never going to feel well again after my aortic dissection on 08-9 January, 2017. 
    I hope she continues to do well, as I am finally.