ANOTHER PART OF THE JOURNEY

This documenting of my journey is going to be a long one and I will do it as I am able - but please check back often to read updates so that you don't have such a large epistle to read all at once.

It was during that second stay in hospital in mid 2009 that they finally came to the decision that my condition was due to end stage liver failure.

They did all they could to drain my lungs but as fast as they did they refilled again and the condition is called Ascites and usually the fluid gathers in the abdominal cavity but with me it headed north to the pleural cavity.

The Medical staff at the hospital did all they could but did not want to keep putting drains in for fear of infection - but I couldn't breath and pleaded for relief. 

My case was now coming under the jurisdiction of the Gastro department and I was advised that a specialist would be coming to see me one day to discuss what could be done.   My younger daughter took the day off from work and spent the whole day waiting with me for the visit.   She worked from her laptop in my room.

The Specialist who came to see me and to discuss my situation was someone I have come to know quite well.

The discussion was long and detailed.  His firm opinion was that the hospital I was at could do no more for me and would I consider going down to Flinders to discuss Liver Transplant.

This came as a huge shock to me as I was under the impression that I was too old for transplant.  Information given to me by a young Doctor.  I thought the cut off age was 60 and I was 61.

It was hard to take in all that he had to say and I looked to Naomi for some sort of support or indication as to what she was feeling and her comment was -
" You have no choice Mum, you must go and discuss the situation".

And so it was decided that I would be registered as a Flinders patient and then arrangements would be made for assessment for transplant.

It took me a long time to get my head around this and discussed it with my entire family during visits and when I came home again.  

I felt as though I had a great weight on my chest and had lots of soul searching to do as to what I really did feel about this.

What did I want to say to people, who did I want to know, how would I make the arrangements, and just what lay ahead.

I decided that I didn't want anyone apart from my family and very close friends to know what was in store for me.   I felt it better to keep that close and to not become a topic of conversation.   My decision was supported by my family and I then proceeded to make my way through the unsettled days and felt that  if and when a transplant took place then it wouldn't matter who knew.

I didn't think I could cope with comments about having to wait and the not knowing - my way of handling things and for me it was the right way.

It was a roller coaster ride of emotions and being who I am - I wanted to get on with this and be organized - but things don't work that way - there were procedures to go through and the assessment is a long and arduous one involving five days of in hospital stay.

And once again I came home but this time it wasn't to get well it was to be ready to be assessed and then see what happened.

I had medical appointments with the Specialist I had met at The Queen Elizabeth Hospital  - this time at Flinders Medical Centre and arrangements were initiated for my assessment.

A phone call from Kylie at Flinders Transplant Team a few days before my birthday in 2009 gave me details that I was to be admitted to Flinders for the full regime of assessment.  

And so I packed my bag ready to go in for those five days - I had to ring on the morning of the 14th. just to check that all was in order and I was given the green light for admission.

Love and hugs,