Aortic dissection & aortic aneurysm information support group

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

It was 8pm on 7th June 2006 and in preparation for doing a charity walk at the weekend, I decided to go on a bike ride to prepare the legs a bit (I like cycling to keep fit). 8 or 9 miles in to a 20 mile ride and I felt this incredible pain in what I thought was my lower throat. I pulled up on a country lane and got off my bike, thinking it will go in a minute. It didn't and the acute pain worsened. I ended up on the floor with my bike in the middle of the coutry lane.

  

I was found luckily by an off duty A&E nurse who was also out cycling and she called an ambulance. I ended up in Preston hospital and suffered an awful time - not the hospitals fault. I thought I had over done it, the paramedics thought I was dehidrated (it was a hot day) and nobody knew what was really wrong. Family arrived (wife & mum). After a few hours my body started to take action - sickness which was horrendous (I've been sick before but not like that) and also problems from the other end. My body was getting rid of everything. 

  

I ended up eventually on a high dependency unit, where I was more comfortable, but still no-one knew what was wrong. In the morning my wife was informed that they still did not know anything, apart from the fact I was seriously ill and my blood count was very low. THEN someone had an idea and I was sent for an ECHO. This showed a problem with the aorta and a CT scan confirmed a 5cm dissection of the ascending aorta. After appx 15 hours I had been diagnosed and it felt like I was practically thrown in to an ambulance for a blue lighter 18 miles down the road to the specialist Blackpool Cardiac unit.

  

No lie  -  we had to come off the motorway due to an accident and find another route. As we passed the accident on the hard shoulder, I suggested the paramedic should stop and check casualties. The doctor riding with us said "if any of them are in a worse position than you, they are dead  -  carry on!!".

  


Two major operations later over the 8th & 9th June (repair of aortic valve and dacron graft), including a blood transfusion and my life had been saved by the cardiac surgeon and his team; they were all superb. After 10 days in hospital I was allowed home to recover. This was helped massively by the North West Cardiac Charity - HEARTBEAT where I attended twice weekly cardiac rehabilitation sessions. I still attend the gym to use the cardio vascular equipment now.

 

Exactly one year after the surgery, on the anniversay, I completed a 110 mile bike ride over 2 days to raise money for Heartbeat (I had never ridden more than 30 mile before the op!!). They deserved it as they had helped get me back on my feet.

 

Since then I have been diagnosed with Loeys-Dietz syndrome, after initially being suspected of Marfan syndrome !!!

 

Anybody else got a connective tissue disorder and how does your doctor / consultant deal with it apart from an annual echocardiogram?

 

Does anybody know how long a dacron graft lasts or if further surgery is likely ?

 

I hope you are all keeping well. Dealing with the aftermath was hard. For the first two or so years I thought about it everyday. After 4/5 years I now only think about it occassionally and more often than not when somebody else mentions it. I hope no-one is dreading life post op, as things definitely get better, well they have in my case.

 

Happy New Year and stay positive.

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Comment by Richard Deal on January 14, 2011 at 10:23

hey paul,

what a story, especially the inspiring aftermath! i am also a whole lot fitter after my dissection than before because my leaky bicuspid valve is no longer...

to address your questions: connective tissue disorder? the doctors have their suspicions, but i have not been diagnosed or tested for anything - in fact loeys-dietz is a new one for me. every new doctor i visit (not very often now, but initially it was like collecting a fantasy medical team) used to look at me with an air of assuredness before exclaiming marfan's syndrome. i always felt bad showing them my comparatively stumpy fingers and telling them no.

apart from the medication, my treatment is basically yearly ultrasound scans of the heart (at last scan only 12% of it was dead), valve (slight leak, nothing to worry about), arch (looking as good as dacron hemashield can), ascending (also dacron hemashield) and descending aorta (2.7cm diameter, but still dissected with flow in both directions). i also have the odd blood test when my doctor starts to miss me and i am due another full trunk cat scan or mri at some point to just sharpen up the measurements that they get from the ultrasounds.

lifetime of a dacron graft? talk about scaring the shiite out of me, i never even thought that they would have a lifetime. can't find anything about lifetime after a quick search - i'll ask my doctor next time i am there...

happy new year to you too, with lashings of health, wealth and happiness. good to have you here!

r

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