Aortic dissection & aortic aneurysm information support group

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

As many have said already, date stamp August 2nd 2014 will be a day I remember for the rest of my life. I fully intend to do my best to live it to the best of my ability.
I left my expat home in Germany for a 3 week business trip on July 21st, arrived in Australia in the Northern Queensland town of Cairns on Wednesday morning of 23rd July. I felt rather good, caught up on a few hours of sleep and I was ready to meet friends by lunchtime. I should add at this point that I regularly fly long haul, or I did! For my work and changing time zones by 8'hours was a regular part of my life.
Later that afternoon, I was swimming in the sea and had some short running races with my friends kids, when I had an episode of acute pain in my chest and back.
I went to the Emergency Department in Cairns where I was told after ECG I hadn't had a myocardial infarction, good news I thought, I was sent away!
5 days later I was speaking at a dinner, and the same symptoms but worse came over me again. This time and ambulance trip to the ED. A CT scan ruled out a brain bleed and a lumbar puncture the next definitively ruled out a brain bleed.
I went to seek a second opinion and also to understand what was causing the pains, but no diagnosis was reached. I decided to leave for home early and rescheduled my flight to 2nd August.
I was ready to leave for the airport and the 8'hour flight to Hong Kong, when I had the third and most significant episode. This was a big one, and I knew I was in trouble. The last advice from the docs at the ED was 3 x Aspirin ( this will be significant later)
I was lucky the ED doc thought of Aorta, and a CT scan was performed, he told me it was not such great news, but strangely I thought that a diagnosis was better than not knowing. Although I didn't know that it was quite as bad.
Of course the nearest cardiac centre was over an hour away and arrangements were started to airlift me by the Royal Flying Doctors Service. I made several phone calls, to my beautiful children, hardest calls of my life, and then prepared for the airlift.
The plane was diverted and I had to wait for a helicopter, time seemed to slow and I became somehow relaxed, and just had confidence in the medics.
I had arterial lines and blood pressure monitors inserted, and soon was ready for the heli.
The heli medics arrived and we were off, the crew flew along the coast, using the stronger night time on-shore winds to help the speed of the heli! The hour and ten minute ride to collect me was reduced to 40 minutes for the return trip with me on board.
We landed at Townsville airport and then an ambulance trip to the Mater hospital, Saturday night around 10pm and a full medical team all prepped and ready to operate. I had two minutes with the surgeon and my last words were " I'm not ready to die, I have too much to live for, do your best please"
I had a Dacron graft, repair to the aortic valve with a small piece of bovine patch, and the repair to one of the carotid arteries and the ascending aorta and arch.
I had 9 hours of surgery, and then a period where they couldn't control the bleeding (large dose of aspirin ?) so I nearly bled to death.. 17 units of blood, many compressions and cooling of my body and 24 hours later it came under control. I was taken back to OR and stitched up in a second operation.
I'm not sure I will ever know just how many times I had come this close to not making it. 5 days later I was brought out of the anaesthetics/coma
I will forever be grateful to the skill of the surgical and nursing teams in Townsville in Australia. Amazing teams and wonderful and humble people.
I'm exceptionally lucky, have mostly good days, but some not so good days, also.
Tomorrow is my first CT scan since the original diagnosis CT.
More about my recover in another blog
Steve

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Comment by Angela Kirkham on September 26, 2014 at 14:03

Hi Steve- great to hear of another survivor of this horrendous condition. Good to hear you are recovering well after quite a harrowing pre-op and post-op journey. The diagnosis was slow in coming but thank goodness the last ED Doctor realized what was happening- it is a difficult diagnosis and rare condition.  I like you am still in the early recovery period but getting better every day.

I do hope your CT scan went well and await your next blog with interest.

Angela

Comment by Kimberlee Jones on September 22, 2014 at 12:41

Glad that you are doing well over all.  It can be a long slow recovery for some(including me..lol) Yes having good days and not so good days is normal. I am almost 9yrs out and I still have a day here and there where a nap is necessary. Getting used to the new life style was also a bit of a uphill climb. I found the worse part was the mental recovery, that didn't even begin until I found this site and was able to talk to people here(over a year after my surgery before I found this group)Please let us know how the CT scan goes, we have our fingers crossed over here. 

*hugs*

Kimberlee

Comment by Graeme on September 22, 2014 at 11:32

Hi Steve.

Welcome to our little band of brothers (and sisters!) Not only am I the founder of this site but also an Aussie who lived in Far North Queensland (Cairns area) (Port Douglas) from 1990 - 1999. You are indeed a survivor.. Cairns is lovely but frankly NOT a major medical hub. you were VERY lucky a doctor caught this at Cairns Base as it (as it is so far out of their normal expertise) and that you made it to Townsville, which is however the centre of advanced surgery and medical treatment in FNQ. So take out a great big lottery ticket entry for both the doctor at Cairns Base and also the medical team in Townsville - you are very very lucky man. Get better soon!  ps I still miss Port Douglas and the FNQ lifestyle...    

Comment by Steve Williams on September 21, 2014 at 18:01
Hi Kimberlee
I think I'm doing really well, chest is improving really well and only a slight limp in my right leg, when I walk , it's intermittent. Tomorrow I have my first CT scan since the diagnosis, so I'm hoping it goes ok. I really know how lucky I am. Mostly good days, but sometimes not so good. Which I think is normal.
An added complication is I live in Germany, and I'm not fluent in German language:-(
Comment by Kimberlee Jones on September 21, 2014 at 17:51

Hi and welcome Steve. Thank you for sharing your story with. All to often AD is misdiagnosed and most of the time the results are not good.  I am glad that you were finally able to get a diagnosis and surgery was successful. How are you feeling these day(mentally and physically)?  Welcome to your life version 2.0!  Stay strong so glad you made it here.

*hugs*

Kimberlee

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