ShareLife Blog

The Waiting Game

Tuesday, November 20, 2012

In the first of our community blog posts, Peter of @peters_liver tells his story. Peter is an Australian Federal Police officer and a clean living, yoga loving husband and father of three young girls. He is waiting for a liver transplant and has been for over a year.

 Peter and his family

In October last year I was busy working as well as helping my yoga teacher by teaching some classes while he was leading a retreat in Bali. In short, I was active and although I felt a little tired at times I chalked it up to being busy.  Then on 18 October a good mate said, “I don’t want to worry you Peter, but you look a bit yellow”. 

I had experienced some stomach cramping in the month preceding but never believed it was my autoimmune condition, primary sclerosing cholangitis (PSC), attacking my common bile duct. Why would I? My specialist had only recently completed a battery of tests, which concluded the condition was there but not doing a great deal.

I promptly returned to see my specialist, who announced as I walked into his office, "Yes. You are yellow." We discussed the possible causes with the most likely being just a minor infection that antibiotics will clear up. To be sure, my specialist sent me off for an ultrasound. I knew it was something more when the radiographer called a colleague to have a look. Essentially they had lost sight of my bile duct.  

The next day I was directed to present myself at emergency for urgent and more detailed testing. Things rapidly got worse and a scheduled procedure got more complex until, at the last minute, it was cancelled so I could be transferred to a specialist hospital for the purposes of a liver transplant ‘work up’. Part of that procedure would be to check for malignancy in my duct when they tried to clear the blockage. If there was malignancy then nothing more could be done and I would not be placed on the transplant list.

I spent about seven weeks in hospital with temperatures pushing as high as 40 degrees. My wife visited virtually every day. The due date of our third child was getting closer and closer.

The first procedure to insert internal drains and relieve the built up bile and associated infection failed. They simply could not pass the drain piping through my busted duct, it was shut too tight. They scheduled me for a second procedure which was successful and ended with three external drains inserted through my skin and down my duct with the external end attached to a bag strapped to my leg. One year on and I still have those drains and bags on my legs.

On 23 November 2011, I was still in hospital when my wife went into labour.  A nurse was attending to my drains to get me ready for an hour’s hospital leave to be present for the birth when I heard Nadia had been born. I was on the telephone to my sister who was with my wife. I had missed the birth. Truthfully, the birth would have been painful for me. My stomach hurt, it hurt when I moved and if I laughed or if I cried, and both would have occurred had I been at the birth. I got there half an hour late and was so tired within half an hour that I had to leave.  The photo above was taken the next day when I still looked yellow.

In 2012 I have been admitted to hospital about seven times with each admission lasting about one week. Leaving for the hospital and saying goodbye to my three young girls, Anna, Alissa and Nadia and my wife Elena is always difficult. Doctors have made it clear that fevers and the associated septicaemia is one of the things that could cause me to die.

Trying to plan each day can be a challenge. There have been times when my drains leak so much that I have needed two nursing visits a day for dressing changes.  Being on the transplant list means I always need to be within four hours of Perth, but leaking like a sieve and spiking fevers makes doing anything, let alone a short holiday escape with family, very difficult. My wife has been wonderful but there is no doubt this is a challenge for her. Aside from daily activities that I can be too sick or tired to help with, she used to travel overseas each year, with our daughters, to visit her mum. That didn’t happen last year and a question mark remains if it will happen this year. I know that decision is going to be difficult for her.

Twelve months have passed since I was placed on the liver transplant list and I continue to wait and hope that some stranger’s incredible act of generosity by electing to be an organ donor will turn my life back around and enable me to spend many more years with my family.

 

Follow Peter on twitter @peters_liver

Follow ShareLife on twitter @sharelifeaus

 

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