Aortic dissection & aortic aneurysm information support group

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

Hi all,
I've enjoyed reading the other stories on this site, often finding myself nodding along to peoples' observations on their own strengths and weaknesses, the joy of family and friends, and the wonders and limitations of the various elements of the National Health Service.
So, having recently joined it seemed about time to share my tale......
The 19th May 2012 looked like being a good day. I could see I was  getting fitter due to cycling 20 miles a day as I had just run for 45 minutes around the park. It was my daughters 18th birthday so we had Bucks Fizz and smoked salmon for lunch and were looking forward to a family meal out at a local restaurant.
We were nearly there when the dissection started with a severe pain in my chest and abdomen. Luckily I was able to pull the car over to the side of the road and the ambulance was there in a few minutes. Like many of you know, the pain is indescribable and through the tears and fighting for breath I can remember seeing my four children lined up on the pavement watching me being treated in the back of the ambulance. I can't imagine what my wife Jacqui was going through as she followed the ambulance in the car, but I do know how grateful she was to one of the ambulance crew who negotiated for her to leave the car on the ambulance ramp so she could come straight into the A&E with me.
St. Thomas' Hospital has to be one of the best located hospitals there is, on the south bank of the Thames with views across the river to the Houses of Parliament and Big Ben and downriver to the London Eye. Despite the fact that it is a regional referral centre for Aortic Dissection it took about 24 hours to be correctly diagnosed. I had severe pain in my stomach and the most excruciating back pain. I can still remember the relief of sucking down the syringes of morphine. Luckily I was sent for a CT scan for a pulmonary embolism and they discovered the dissection. I thought they had been pretty brisk and efficient but they stepped up another gear when I came back from the scan. By this stage Jacqui had gone home, the pain was much less, everything had seemed calmer - I was still expecting people to tell me I'd had a bad case of wind and to send me home! After the initial shock of A&E she then had the lovely experience of getting the "please come back to A&E, it's a bit more serious" phone call - courtesy of a lovely A&E nurse who lent me her phone.

The Vascular Team took over and whilst rushing to insert the arterial line and get me admitted to the High Dependency Unit, explained what had happened. It was a Type B dissection, the good type apparently because it doesn't always require emergency surgery.

The next two weeks were spent hooked up to the machines and drips whilst they tried to get my blood pressure and heart rate down. The staff were fabulous but it was my family that kept me sane. Seeing them at visiting time was like cool water on a hot day. Two of my sisters even travelled back from Spain to see me.

Apart from telling me how shocking I looked in the dusky pink hospital pyjamas, and not to look online at all the scary information about Aortic Dissection, everyone was most taken with the view from my window bed and disappointed that I was discharged the day before the Queens Jubilee Thames River Pageant that floated right past.

Getting home after two weeks was fantastic, but I did succumb to the internet and scared myself silly, at the same time realising how lucky I had been. I tried making sense of the prevalence, incidence and survival statistics but ended up just telling myself and others I was really unlucky to have an Aortic Dissection but more lucky to survive it - well that's how it felt anyway.

Everyone rallied around and we had more more home made dinners donated than we had room to store. No one would let me pick up anything heavier than an iPad and I regularly veered between bouts of self-pitying angst - why me? and elation - thank the stars!

June was passing and Fathers Day and my birthday had never felt so good. I thought everything was going well till I mentioned to my entertaining Hypertension Consultant that I was still getting increasingly bad back pain as well as increasing pain in my legs when walking. Well, after he'd finished telling me to use beetroot shots and to buy The Wine Diet, he told me I should mention this to the Vascular Team. On their advice I was back in A&E the same day and after another CT scan was told I needed a stent graft for my complicated Type B dissection.

The operation went well, apart from developing a grapefruit sized haematoma where they made the incision in my groin. I am now the proud owner of a GORE TAG stent graft in my thoracic aorta. The surgeon told me it cost £16,000 -  not quite the Six Million Dollar Man I remember watching as a kid -"We can rebuild him........"

Looking back it was a really hard time for everyone. My eldest daughter was doing her A Level exams, so I was really proud that she got excellent grades, and my other daughter said the best bit about me being home was that it would stop all the "helpful visitors" putting the cutlery in the wrong drawers. The children also had the fun of going through their own scans for signs of abnormality in the aorta. They found that my eldest son does have a slightly dilated aortic root, so we'll have the blood tests to see if we have a "mispelt gene" and await his MRI scan for more information. No contact sports for him in the meantime. My youngest son has developed an even more empathetic nature than he had before, often checking if I've remembered my tablets and trying to convince me that the main difference is that I'm not so wreckless as I was before. 

So, nearly 18 months on and I can't say I've totally adjusted to my new life. The pain has mostly gone, but I still get the intermittent claudication. I'm back at work but am exhausted most of the time. I'm off the career hamster wheel and just concentrating on getting through the days. I really struggle on stairs, even though I can do a brisk walk on the flat for about an hour now and I know Jacqui worries about me. She works even harder than she already was doing to keep the family and home going and I love her more than ever.

My most recent MRI showed a good result according to the Consultant. The aorta is 4.3cm and he thought everything looked pretty stable, though one leg and kidney are now supplied off the false lumen. I forgot to ask him what happens if the false lumen thromboses and the blood stops flowing through it. Anyone know?

My blood pressure and heart rate are well controlled but I have a love/hate relationship with the medication. How can you not love something that's effectively prolonging your life, but I could really do without the tiredness and spaced out feeling.

So that's me - another AD survivor!

Views: 286

Tags: B, Type, complicated, false, lumen

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Comment by Kimberlee Jones on November 17, 2013 at 16:56

Every time I read another survivors stories I go through the same emotions/thoughts. Even though I've been though a dissection and more, I'm still amazed as I read these stories.  And as always my thoughts end with wow what a true survivor I'm glad he/she has found us and is now a member of this truly unique little family.

Comment by Paul on November 13, 2013 at 19:44
Thanks Richard. I'm not on any thinners or aspirin. More questions for next Consultant visit. However well I think I've prepared for these consults I always come away without covering everything I wanted. I am having blood tests every three months for kidney function but I thought that was to check there were no adverse effects of the medication rather than rates of perfusion. The Consultant told me my right kidney had shrunk a bit but I was still focused on the fact he said everything was stable. Sounds like you and many others on the site have had more experience of dealing with the professionals so it's really helpful to have these sorts of suggestions.
Comment by Richard Deal on November 13, 2013 at 13:43

hey Paul,

welcome to the group! great story to read too...

regarding your question about the false lumen blood flow - that is exactly the point. there is no guarantee that blood will flow through the false lumen. if the lack of blood flow lasts long enough then your kidney will essentially "die". i'm guessing you probably aren't taking thinners or anything stronger than aspirin so there is a risk of thromboses forming - which increases your overall risk of stroke etc.

it all sounds bad, but i have had exactly the same (the aad and left kidney/right kidney from different lumens, not the gore tag endoprosthesis) for 5 years now and - touch wood - haven't noticed anything untoward, but i am on thinners because of the heart valve and am regularly checked (initially every 6 months, now yearly) for renal perfusion by my cardiologist, i'm guessing you'll be checked regularly for perfusion too as it is a big risk factor for your particular dissection.

take care,



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