Aortic dissection & aortic aneurysm information support group

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

Firstly I want to say how great I feel having found some fellow survivors of this life changing condition.

Here is my story. 

I am an artist 59 years old living in Spain with my partner Jean I´ve been with for 33 years. We have an enormous garden and I was not frightened of doing jobs on the roof, so not a wimp. We had visitors, my step son Andy, his wife and baby and it was 14th May 2010.  I cooked the breakfast for us as normal and went to my room to change and suddenly felt the most excruciating pain I have ever felt in my throat, just like being strangled but from the inside.  I couldnt even move and within maybe a few minutes I felt the pain travel right down my body deep inside.  It must have let up a bit because I went out of the bedroom and told my partner and said I thought it might be severe indigestion, and I would take a rest and see if it passed, in wishful thinking and hindsight some hope!.  It didnt and I couldnt stand or sit or lay on the bed comfortably.  She suggested going to the Ambulatorio here (Medical Centre) and I promptly agreed.  I felt awful with a pounding headache along with the chest and throat pain.  On the way my vision started to fail with my vision being speckled with intense black white and silver triangles.  By the time she got me to the medical centre I was losing conciousness.    Poor people couldnt figure out what the problem was as the ECG was normal and I dont think they had come across AD like mine before.  Thankfully they decided to blue light me to the Univercity Clinico in Malaga.   

I do have vague memories of this time but I was not properly concious again until after the operation.  When I came round from the op.I had an Type A dissection with 22mm Dacron replacement. I felt like I was at the bottom of a swimming pool and having to draw each breath through a drinking straw.  I had no Idea what had happened to me and I was unable to say anything because of the mask. Not having the strength to even lift a finger and hearing voices but not able to communicate.  Screaming in my head for help but no one can hear.   Being a trapped in a body that dosent work.  I suppose this is like  ' locked in syndrome   I thought I cant live like this and remember making a mental note to deal with it.     My distress did not go un noticed and I was rapidly put on a ventilator and put in a chemical coma.  I later found out this was caused by Acute Respiratory Distress Syndrome (ARDS).  I remained in this coma on the ventilator in ICU for another 2 weeks.  I was not totally out of it as my step son Pete visited from the UK and I heard his voice and had some extraordinary dreams and fantasies.  I had full blown conversations(in my fantasy mind) with Andy as he is a nurse, about the indignity and dicomfort of having to wear a nappy.

One day they woke me up properly and changed the tube down the throat for a trachy tube attached to a special breathing aid gaget.  I still had no idea what had happened to me.

It was a revelation of enormity that it was up to me whether I lived or died.  I misguidedly thought that it was up to the medical staff or the almighty.  Finding still no voice(trachy was below the vocal cords) not even a whisper.  It was also a shock to find that most (almost except my partner) people cannot lip read.

The ICU nurses were fantastic but coulnt get to grip with me because they insisted I understood no Spanish so felt they just couldnt communicate with me so they didnt even try.  To get attention I had to squeeze the air line to make the alarm go off as it was right by my hand.    After two weeks in a coma I couldnt even raise by hand to my face I was so weak and my hands were swollen up.  I was not allowed any water at all just one mouth wash stick in the morning.  I was convinced I was already dead and this was a dream.  First day awake and Jean came to visit 30mins only in ICU.  Just long enought for her to explain to me what had happened.  I was desperate to go home  but I had no real comprehension of the seriousness of my situation.  I spent another 10days in ICU concious trying to get all the crap of my chest and I have never known such hard work and feeling so depressed and scared I didnt have the strenth to make it.  The drowning feeling was always just round the corner and if I could get someones attention to suck out the machine I would have to drop one of my sqeezing balls and hope some one would notice me.   Eventually I had a chest drain fitted to drain the fluid outside my lungs. I was convinced they were starving me to death as I had no water or food but of couse they were feeding me by tube I just couldnt see it. 

Then after 10 days of struggling the consultant said I could be sat in a chair. Ha, what a laugh that was.  4 nurses struggling with a misbehaving hoist and me just dangling.  It was the best and I was able to cope with breathing so much easier.  That was my turning point.  Next came the sips of water, then the fuit jelly and finally Malaga Clinico´s best fish soup.  Nectar.  It tasted really salty but I didnt care, then. The nurses got s shock when they realised I had understood all they conversations!!

Eventually I got to the ward upstairs and still couldnt suport my own weight.  Just like a rag doll.  Jean said you cant come home till you can walk to the loo unaided.  I cried a lot and we started practicing with a chair as support and within 4 days I was home.       All food tasted of salt but thankfully it gradually passed.

I fought with my BP for 6 months after all this but finally found a combination that keeps my BP Low.    I am not the same person I was in lots of ways but a live life to the full (as full as I can).  My aorta is still dissected according to me latest scan.  Next one to be in September, I wonder if it can repair itself, anyone know?

I still have vivid colour dreams each night and I always wonder where I am going tonight.  I can even get up for the loo and resume the dream where I left off.  This part I love because that really is living life to the full.   I will post a photo when I have one of now.  I apologise for the longwindedness of this but it all seemed important.  Thanks for reading this If you got this far!!!!!   Julia Holley 

 

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Comment by Martha Adams on August 10, 2011 at 16:11

Hi.. what a story!  My understanding is that an aortic dissection can never repair itself.  We live with the aftermath forever, but must concentrate on monitoring blood pressure and being proactive regarding our health and care.  At least that's where I am at!   Good luck!

 

Comment by Celia on July 25, 2011 at 12:00

Thanks Julia, I think I am doing stuff wrong here, hopeless!!  I did a mail which I put in a blog but probably shouldn't be there, please have a look when you have time.....

Celia

xx

Comment by Julia Holley on July 24, 2011 at 16:48
Hi Celia, welcome to the group.  Do tell us the whole story in a personal blog and anyone with any valuable information will help if they can.    Being a time bomb we all know about.  Try to keep calm and take care.  Julia  x
Comment by Celia on July 24, 2011 at 16:23

Has anyone had an AAA endovascular repair, and did you have other conditions that made surgery risky?

I am sitting on my own personal time bomb here with a hospital reluctant to touch me, help?????

Celia

Comment by Tim Manning on July 11, 2011 at 9:43
Glad you've found us, Julia. I'm another survivor who was operate on in Spain (Las Palmas), and though I didn't have it as rough as you in the ICU, there's a lot of your story I can relate to (as you'll see in my blog posts).  Those close to me were very worried by the fantasy world I inhabited during the first 10 days (mind you, Spain uses drugs they don't use in many other countries). I hated the loss of dignity and independence, but - even though I could speak it already - my español really improved during my hospital stay!
Comment by Kev A on July 10, 2011 at 20:58

Welcome aboard Julia

You've had it rough - as rough as it gets - but stick with it, it gets easier but don't expect instant results. 

The stuff about the dreams/real world brought it all back - so real yet clearly not when you think about it now.  I had Dr Manhattan (from Watchmen) following me about for at least a day - nuts

 

Any how - stay well and be strong, you'll get there.

Comment by Carol Pont on July 10, 2011 at 2:53
My first anniversary of my Dissection is on 28 August. I received a letter on friday telling me too book too have my First MRA. I am nervous. I really feel for you. What you must remember. Is the recovery is both Physically and Mentally. Lovely reading your story. Hugs Carol. :) x
Comment by Julia Holley on July 9, 2011 at 21:53

Hi, thanks for reading, you are right about the mental part as I have been emersed in a dreamworld since and during my ordeal.  At first I was convinced I went to the USA for the op and remember quite clearly waiting on a trolley in an undeground car park for the Delta Air pilots to arrive to fly me home.  We will take anyone with a credit card they said.  I remember this as if it were the truth.  I lived for some time in an infra red dish and had a carer called Bashir.  Where does all this come from its all rubbish.  Being an Artist and teacher my world is strongest in the visual sense but this is all really baffling.  As I said before I have learnt to live with it now and even love it as it opens unknown places.  Would all this come from the drugs we are given during the coma time?  Anyone know?  

Also has anyone else had a thyroid problem develop from the medication for high BP?  I am waging a batttle with my Medico about this now.  Bit hard with the language as its hard to get across the finer points.  Another day maybe.

Comment by Kimberlee Jones on July 9, 2011 at 19:23
Hi Julia, I don't think that I will ever stop being effected when I read a survivor's story!  Graeme has pretty much summed up everything I was going to say. It Does get better!  Just don't push yourself and take one day at a time. Try focusing on the positive, this is a second chance, your alive, you survived. It's an uphill battle but one that is worth it. I can tell you the mental battle is a longer harder one than the physical, but this site has helped so much in the mental recovering and saying that, you have already begun to win the battle just by joining. I look forward to getting to know you and am happy to have you here with us.
Comment by Julia Holley on July 9, 2011 at 16:35
Hi, Still reeling from finding you all. My situation was caused by a prolonged period of unbelievable stress. Today not only have I found a group of soul mates here but have just heard that the FSA is actively working on our case against a bank who stole our pension and it should be resolved soon. This is a truely wonderful day.

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