ONE STEP FORWARD AND LOTS OF STEPS BACK.

This image seems to represent how my mind was working during this time - all over the place.  

I was nauseous each morning and could not face breakfast or lunch or dinner for that matter, and as the days passed I became aware of a sore throat which I mentioned to the nursing staff and was given some lozenges, which did not help.

I seemed to be progressively less well as the days passed and on a Sunday morning I woke and could not see out of one eye at all and a very blurry image out of the other.  

I asked a lovely Scottish nurse to listen to what I was saying about how I felt and she did and also checked for a rash  - came back to me to let me know that they had an Opthamologist coming in to see me and to check my eyes.

By the time the lovely young Doctor arrived from home later on the Sunday morning my eyes had deteriorated even further.  She seemed to recognize what it was straight away and suddenly there was a huddle of Doctors and Nurses in my room all talking about "Stevens Johnson Syndrome" something non of my family had ever heard about.  We are now so much more aware of what it is and what it does.  I know my girls researched it on the net and talked to Doctor friends about it, so they were quite aware of what was happening.

There was much discussion and debate as I deteriorated further by the hour and my skin had started to peel off and I was very unwell.  There was talk about sending me to the Burns Unit at the Royal Adelaide Hospital, but they didn't have a bed and could have only treated me through their Emergency Department and the Transplant Staff felt that was too risky because of the chance of infection.

I really don't have much recollection of how quickly things moved and the order in which they happened, but I do remember being moved to HIGH DEPENDENCY where I stayed for what I thought was three days but in fact was three weeks.

The diagnosis was that it was indeed Stevens Johnson Syndrome and this link from Mayo Clinic will give you information about it.

http://www.mayoclinic.com/health/stevens-johnson-syndrome/DS00940

As I have said i recall only glimpses of this time - I know I was fed through a tube and went to the operating theatre five times to have dressings changed.

I was swathed in silver lined dressings and was hot and very uncomfortable.

Visitors were restricted to my family and even they had to wear gowns and masks as did the nursing staff each time they entered my room.

I was totally unaware of life outside that room and each time I came back from theatre I had dreadful dreams and panic attacks - I thought I was in an abandoned warehouse and I couldn't breath.  Gentle, kind and caring nurses would talk me through it and wash me where they could and brush my hair, and care for my mouth and lips.


The dreams were like Miss Pac Man and I couldn't breathe unless I got the little feeding tablets and would struggle to breath.  Another time there were little blue and yellow penguins marching around my room wearing little raincoats.   I can recall telling them to go home!


I was a tangle of feeding and breathing tubes and IV lines and moving was hard enough without having to take those into account and not pull them out (there were times when I would have gladly pulled out the feeding tube) I was on some high protein feeding substance and I felt bloated and full all the time.)


I recall one day looking down and seeing the tubes, the dressings and feeling that I really must be very ill - prior to that it was just something I had to go through.   It was indeed a challenge.

It was a nightmare - and yet three weeks went quickly and I slowly became  well enough to be taken out of bed into a chair and before I could go back to my beloved 5E and it's angels I had to have the dressings removed.

I was under the care of the Plastics Unit, Dermatology, Opthamology - you name it - they were there and all the time in the background was the Liver team making sure that all was going well with my newly transplanted liver.

I was also under the care of Margaret Moncrieff - Wounds Management Consultant - who treated me with such dignity and kindness that I shall never forget.

Everyone decided that five trips to theatre was enough and talked to me about having the dressings done with Margaret taking them off and pain relief being available in the form of a personal pain pump that I could press and it would administer doses of morphine, and they also wanted to have cylinders of Nitrous Oxide and an anaesthetist present to help.

So starts another chapter in my story.

Thanks for reading the story of my journey.

Love and hugs,