Aortic dissection & aortic aneurysm information support group

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

OK, just found this site, and thought I'd say hello, share my story etc...

 

It all started on 7th April, I was working at home when I had a really painful back ache suddenly come on.  I basically thought I'd sat funny and pulled a muscle.  This pain just got worse until we called the out of hours doctor at about 2pm.  He felt all over my back, asked many questions aimed at seeing if I'd had a heart attack, felt my kidneys then said, lower back pain and gave me a prescription for some pain killers. 

This was on a Thursday night, so couldn't see my main doctor until the Monday.  The doctor concurred with the out of hours doc and signed me off for 2 weeks, and gave me more pain killers.  After a week I went back and said the pain killers don't seem to be working and are making me constipated!, can I get some physiotherapy.  So, nearly 2 weeks after my initial pain started, I started having my back manipulated and pummeled. All this was happening during the mad bank holidays and royal wedding period, so there was lots of blank days anyway. 

After about 3 weeks I was getting bored, so asked if I could go back to work, so I had 2 weeks where I would work a while (at home) then rest for an hour.  Then in early May I was still feeling rough, my arms and legs ached, I was having real trouble eating then one night after a busy day getting some real useful work done my eyesight suddenly went from normal to terrible - long sighted etc.  I went back to my doctors and said something is up, he did some blood tests.  The results of the tests meant he called me back in and tested my urine and then finally took my blood pressure.  The blood tests showed I had raised markers (cant remember the name) indicating a serious infection.  The urine had blood and protean in it, and my BP was 240/140!!!  He wrote a letter for me and said go to hospital to get checked up. 

I went in to the local hospital, and a whole raft of tests were done (me walking around the site from department to department).  Finally an ultrasound was done - initially to look at my kidneys, but the consultant radiologist saw, and diagnosed a potential dissection.  I was admitted to the ward and the following day had a CT scan - at which point all hell broke loose!!! Wind back 5 weeks, the pain i had felt was my aortic dissection occurring, and the residual pain was the right kidney failing as its blood supply was compromised my the dissection.  So, I have a dissection that runs from the aortic arch to the common iliac arteries!  One consultant said it was a Type B, but only just!

I was being prepped  for emergency transfer to a surgical unit, my BP was being tested every 2 minutes, my wife was told basically I wouldn't survive this.  A very diligent, dedicated registrar who was on duty that day did some ringing, and investigations and chatted to the consultant in charge of the Intensive Care Unit.  Rather than surgery they decided it was safer to stabilize my condition with drugs, and I was rapidly transferred to ICU.  I had a week where they pumped every BP lowering drug they could get their hands on through me.  1 week on ICU, on week on the Cardiac ward, then back out to try and rebuild my life! 

I am still on 5 lots of BP medications, one water tablet, and an Iron tablet. I'm still here, I still have the AD, I still am living with this Damoclene sword over me.  I'm still signed off - 14 weeks after my "back pain".  My doc wonders whether I will get back to work.  I am under consultants in Guys and St Thomas' in London now, who are doing more tests and imaging to decide on the best cause of action.

So, sorry for the long post, it just takes a while to get it all down!

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Hi, I am Julia and a very new member.  I had my dissection last year and have just found this site too.  It does help to find others who are in the same sort of predicament.  Read my blog, mine was last year but I live with a dissected aorta despite having surgery so I know how you feel.  Thankfully my BP is now under contol, took 6 months to get it down though.  Good luck , we are all still here.

That ticking time bomb feeling, wether you have had surgery or haven't we all have it. When the AD is first discovered it seems that feeling will never go away but as time goes on, it does.  I assume they are watching your AD very closely, which can give a little bit of comfort but not nearly enough.  This site does do wonders for you, meeting and talking with others who have AD, some who have had surgery and some who have not.  And when you read about some of us reaching our 5yr or even 10yr anniversary, it does give you hope.  We are all hear for you if you need to voice concerns, vent frustration, or just need to bend the ear of someone who knows exactly how you are feeling.

 

*hugs*

Kimberlee

Oh wow. What an experience you describe!  Such stories as this are so humbling. I'm still struggling to get a diagnosis (I'm pushing hard right now for some scans) so my lack of diagnosis kind of makes me feel a bit like an interloper in this forum.  I don't know where I belong because the docs have been so slow in accepting the accuracy of what I say when I report my symptoms.

Thanks you guys...  I am a positive person, I don't feel depressed about what happened, the worry I feel is more for my wife n kids.  However, I am an engineer, I like to know how things work, how they stop working and route causes of things - my job involves evaluation of risk.  So understanding my risk levels is important. I understand the mechanics of what happened to me, but am frustrated with not knowing the cause. 

Yes, still in the investigation and diagnosis phase, some 14 weeks post AD.

Hi,

I'm dissected from the ascending aorta to my graft  below the arch, then from the graft around the arch to iliacs, and brachiocephalic, subclavian and carotid arteries. I had to have emergency surgery when it happened, in June 2006, but, to reassure you, I work full time (albeit in an Administration post) and was back in work, part time, 16 weeks post surgery. It was my 5th anniversary last month.

I lost my left kidney and renal artery for the same reason as you but the remaining one is doing well.  

Have had to make some seemingly big changes which appeared drastic originally, especially as I was a fit, gym going 46 yr old, non-smoker with no high blood pressure problems or any of the causes normally assciated with dissections.

Surviving makes up for it! 

Have no idea how to begin Risk Assessing this, or your, condition as everyone and every case is different, as is the treatment. Post Codes and International date lines certainly play a huge part in diagnosis, treatment and, therefore, survival rates it would seem.

I'm sure you'll have a good team based at Guys & St.Thomas.

All the best

 Allie

 

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