A Life Change

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