Wow. From that last entry till now; wow.
From that point, Dad lived in the hospital. The director of the ETU stated that if he went home, he'd die; that they didn't get sicker than him, it was going to be a hard week, and that he was at the top of the Victorian Donor register.
He stayed in hospital having twice daily blood tests to test for ammonia & potassium levels. The potassium levels basically just tell us how well the kidneys are functioning.
He was pretty stable until Friday when the potassium levels reached dangerous levels - implying that the kidney was about to shut down. So, back into ICU we went; but this time, it was only for 24 hours. Which was a massive improvement to us managing at home. So, it was a real eye opener having him living in hospital - it was literally saving his life.
Last week was also Organ Donor week. We met a guy who had been through all this, lived in hospital like Dad for five months before receiving a liver. It was really reassuring for all of us to know it was all normal. That he wasn't the only liver patient to be almost dying. We got a great deal from this man and I will be indebted to those like him forever.
Dad picked up again and ended up a bit over 'stable'. He was almost 'well'. He got a bee in his bonnet about redeveloping an old house he owns; to the point where he was calling builders from hospital. The lovliest bloke I will never meet called to ask if he was Ok and is now going to humour my father by telling him he is going to help build his house.
It's like he was going 'oh, well I have a house to build, I can't possibly die whilst I have a house to build' and I really didn't want to burst this bubble for him. I'd already organised for one of G's friends to be a 'builder' calling him back; M was happy to take his calls and entertain him. Which was a beautiful thought from a friend - I just never expected it from the builder himself!!
This brings us pretty much to today.
He was tapped last night and didn't have a very good day today. He was scheduled for another gastroscopy this morning, but they cancelled because he wasn't well enough. He got moved into a shared room with 3 other VRE carrying patients. He was stoked. Then, nurse ratchet took away his water; her thoughts were that custard counted as a liquid and, because of that, decided he'd had enough water; even though both the ETU & his dietician said he should NOT count custard/yoghurt/full cream milk as his liquid, because he needed to gain weight. So, he was rapt with life.
At 9.25pm tonight my phone rang once and stopped. I am waiting for THE call, so I pretty much jump on it. It calls again; I snatch it up 'hello' - I get some muffling and then hung up. 'Oh fuck, he's dead and mum is a mess' comes to mind. Third time, it's mum. She's a little flustered and teary but she tells me;
'He has a liver'
I spin. Honestly, my stomach dropped and I had to run for the loo where I lost dinner. I burst into tears and I could not think straight. G gave me a kiss, told me to drive safetly and I went to mums.
We all get to hospital; we get a run down of where we go from here. As I sit here, half the team are harvesting (I know, it's an awful way of saying it!!) organs; they will prep Dad even though they don't know for sure they can even use the liver. 'It looks good' is all the information we get at this point, apart from the who's/what's/when's/where's and why's of the procedure itself.
We are told to be back at 5am if we want to see him before surgery.
Is there any wonder I can't sleep?!?!!
Showing posts with label tapping. Show all posts
Showing posts with label tapping. Show all posts
Wednesday, March 3, 2010
Wednesday, January 20, 2010
Seizures and other fun things
This week has gone from up to straight down. As is usually the case with liver disease, but I gotta tell you - it's exhausting. Mentally, physically and emotionally exhausting.
Tuesday he was booked in for a tap - I think I've already mentioned that he can't have medication anymore to control the fluid because his kidneys shut down - and had to be at the hospital at 8.30 Tuesday morning. Thank christ he was (at the moment, I'm kind of debating whether to thank christ, but more on that later).
He had a seizure. Two actually, but the first one was just after they marked him to put the tap in. Mum was there and got nurses etc who whisked him off to ICU. Again.
Whilst they were doing tests etc, he had another one.
So, he's in ICU and they need to do a CT scan and they find a dot. So, somewhere along the way, between various CT scans he's had, he's had an ever-so-slight stroke. How bad? We're not too sure yet; he's also on anti-seizure medication to sort out the seizures, and it is making him dopey.
As at right now; he's still in ICU and my mother and sister are in there. He was having a MRI scan this afternoon to investigate the blip on the CT radar.
I just hope that this doesn't knock out transplant hopes.
I went in this morning (only 2 at a time in ICU and I was working) and saw dad. I don't know if it's just me or what, but I am near on positive his face looks different. Whether it's me knowing it's a stroke or what - but his face looks like it's 'meant' to after a stroke. His eye has dropped.
Anyway, he is not very lucid but knows enough to know that A. I am not my mother or my sister and B. that he wants them. I was told to 'get out and call your mother and your sister and find out how long they are going to be'. I tried to talk him down, but he was having none of it. I couldn't hold it together anymore, so I had to leave.
His ammonia levels are through the roof; which is causing a degree of encephalopathy - but he still knew who mum and J were.
Just not me. Again.
And it's selfish and it's awful, but it hurts.
Badly.
Tuesday he was booked in for a tap - I think I've already mentioned that he can't have medication anymore to control the fluid because his kidneys shut down - and had to be at the hospital at 8.30 Tuesday morning. Thank christ he was (at the moment, I'm kind of debating whether to thank christ, but more on that later).
He had a seizure. Two actually, but the first one was just after they marked him to put the tap in. Mum was there and got nurses etc who whisked him off to ICU. Again.
Whilst they were doing tests etc, he had another one.
So, he's in ICU and they need to do a CT scan and they find a dot. So, somewhere along the way, between various CT scans he's had, he's had an ever-so-slight stroke. How bad? We're not too sure yet; he's also on anti-seizure medication to sort out the seizures, and it is making him dopey.
As at right now; he's still in ICU and my mother and sister are in there. He was having a MRI scan this afternoon to investigate the blip on the CT radar.
I just hope that this doesn't knock out transplant hopes.
I went in this morning (only 2 at a time in ICU and I was working) and saw dad. I don't know if it's just me or what, but I am near on positive his face looks different. Whether it's me knowing it's a stroke or what - but his face looks like it's 'meant' to after a stroke. His eye has dropped.
Anyway, he is not very lucid but knows enough to know that A. I am not my mother or my sister and B. that he wants them. I was told to 'get out and call your mother and your sister and find out how long they are going to be'. I tried to talk him down, but he was having none of it. I couldn't hold it together anymore, so I had to leave.
His ammonia levels are through the roof; which is causing a degree of encephalopathy - but he still knew who mum and J were.
Just not me. Again.
And it's selfish and it's awful, but it hurts.
Badly.
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.
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.
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