Tuesday, January 12, 2010

The beginning - Liver disease

My father is dying.

Cirrhosis is what is killing him. To live, he needs a transplant.

In my nightly googles, searches and other bits and pieces, I am yet to find any sort of real information that is helpful to me. So, I thought I'd start one.

My father was diagnosed with liver disease about 3 years ago. My father isn't the stereotypical 'drunk who gets cirrhosis' - he worked every day of my life (as in seriously, he'd be lucky to HAVE a sick day in 20 years) running his own business, went on holidays, had a laugh; and had a drink with his mates.

It was a slow diagnosis; he didn't feel 'right' for awhile, but never did anything about it. Doctors were for when you were really sick; not just when you weren't feeling right.

The first time we heard 'Cirrhosis' was in May of 2009. He'd put on 25kgs of fluid and was looking awfully yellow. We had been told he'd done damage to his liver; but up until that point, it was all 'reversible'.

Over the coming weeks and months, we went from taps and taps and taps to .hepatic encephalopathy. The first time this happened; we thought he'd had a stroke. When we got to the hospital, we were 'pffted' at - didn't we get told that this was incredibly common?

Over the coming months we were in and out and in and out of hospital. First it was the taps, the the encephalopathy; then the diabetes started.

In the beginning, we had to watch his sodium levels; my mother spent hours and hours checking packaging for sodium levels and making sure that he didn't have any more than 2000mg a day. But, one his BSL started regularly hitting 30 - we had to start looking at sugar. For what it's worth, do you have any idea how hard it is to find something that is both low in sugar and salt? Fruit was limited, dairy was limited and tomatos were gone.

One night in August, my mother called me at 2am to tell me that he's having another episode. As it all became pretty standard, over I drove. In an hour, dad went from talking to his dead father; to eyes rolling and nearly unconcious.

That was the night his kidneys failed. We spent hours and hours at the hospital that night; they told us to call 'any family we might want to, because it's not looking great'. He ended up in ICU on a ventilator unconcious for 3 days.

It was that night that tipped us over the fence of 'managing' (if you could call it that) - to transplanting. As soon as that happened, things started changing - in all directions.

As it stands now, he is in hospital again (dehydrated encephalopathy this time) and hopefully this close to getting on the Victorian liver transplant list.

I want this blog to be my story. And hopefully, other Australians can learn something; or at least get some comfort/idea/education about livers, transplanting - and being the daughter of a father who is dying.

It is a hard road. It is full of ups and downs - and not just little ones. There are angry moments, sad moments and plenty of bittersweet moments. Families will break down, come together and try to come to terms with what may be their lives for the forseeable future. And individuals will see what they are made of, who their true friends are - and what really matters in life.

This is our journey.

The players - well, of course, there is me. I am Shel; married to G with two children. R (7) and C(5). I have a younger sister (J) who is severely high maintenance and married to Sticks. My mum and dad are married; my father is 56 years of age. My father owns his own business with 12 employees and currently myself and M are running it all on his behalf.

The company keeps both my parents in the manner to which they have become accustomed and is the 3rd sister (if you will) in our family; something that must be looked after. J used to work there, but was sacked just recently because, primarily, she is a bitch. I had to step up from part time work to take her place and work full time hours around children, hospital, school, being a wife, moving house and everything else a mother of two does. Sometimes, I love it. Others; I want to drive away and never come back.

3 comments:

  1. I hope this is a place where others can make these connections (with you and each other). Sharing this sort of soul-weary journey is all about that, after all, isn't it?

    The very best to you and your Dad and family xx

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  2. I'm here following from the sidelines Shel. Take care of you too while you're taking care of everyone else. Love Leanne xx

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