Saturday, April 2, 2011

Day 12 1/03/2011


So where was I with this story....
After around about 5 years I started getting shoulder tip pain and I went back to my Gastric doctor (which I saw every 3 months) and he said that this was one of the first steps on the path to final having the transplant. This pain related to my liver going into the final stages of liver failure. After that I was sent to Sydney to have a work-up, where they see if you are fit to go onto the transplant list. During this work-up they test all your organs, so I can now say that I have had every test ever invented in the history of the world. This process took 1 week in hospital, also you get to met the transplant team which is made up of a ward full of staff, a team of doctors, nurses, social workers, physiotherapists, ect. You get the point.
At start of the week it was just me and my mum, but at the end of the week my dad came up with my other brothers and sister. Then the transplant team considered my case and I remember dad and mum being asked to come away for a chat with the doctors and I saw that both my parents went very quite and white. My mum had tears in her eyes and I new what was happening at 10 years of age, they were going to decide my fate.

I was put on the transplant list in May 1999, and I stayed on that list until April the 11th 2001. In total I was on the list for 22 months. Which is unusually long for a liver, the usual wait is 1 year to 1.5. I waited on the list so long not because I had a hard blood type to match, I waited on the list because I had CF and I had a special bug growing in my lungs. The last patient with CF that they had transplanted had the same bug and had never come off the respirator after the transplant. Some of the staff had such a had time with this boys death that they were very hesitate to take on my case. So because of this bug they wanted to get me off the respirator ASAP. The only way to do this was to find the right size liver for me so that they could close me on the table. In some cases they leave the body open, and the person in a coma for 2-3 days so that the swelling can go down. They couldn't do this with me!

So in essence I became the Goldie Locks of the liver transplant world!
Part 3 later!

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