Feb 8 to Feb 22. Lots happens in liver land in that relatively short space of time.
He's been out of hospital (2 days out)
He went back into ICU again Friday night.
I remember when this all began, he used to spend 3 days in hospital, with 5 days out. Now we're 10 days in and 2 out.
They have taken him off the seizure medication (thank GOD because he turned into an utter prick with it) because it doesn't seem to be helping.
Just let him die already.
Mum and I went to see him yesterday and I ended up doing a head gasket. I'm not going to repeat what I said to him, but listening to the way he speaks to my mother sometimes makes me inherently angry - and really pushes home the fact that he's not really my father anymore.
No idea what drugs he's on; but it was the kidneys shutting down this time.
Of course it's happening now; its mine and mums birthday tomorrow. He couldn't possibly stay around for a family event. He's missed every event (we'll say J's wedding too, because he wasn't there mentally and the next day was our first trip into ICU) for the last 6 months. His birthday, C's birthday, M's birthday, Christmas, R's birthday, J's wedding and now mine and mums birthday.
It's like he's weaning himself off his family.
Showing posts with label living with liver disease. Show all posts
Showing posts with label living with liver disease. Show all posts
Sunday, February 21, 2010
Thursday, February 4, 2010
Paying Debts without money
As part of my job, I carry a pager. Our company provides 24/7 service you see, so if someones coolroom isn't working @ 2am, it's my job to send an electrician out.
Wednesday night, I bombed. Literally. My boss, M, was woken up throughout the night by pagers going off because it was so hot. He was Ok about it, but I felt like a shit.
But; what goes around comes around (as we all well know). Mum called @ 2am - Dad was a mess. All she could understand was that he was going to kill her. So, over I go (J was on her way too, but it's me who seems to be able to put him in his box when he's nuts). He'd also wet the bed. At fifty-fucking-six. Really, WHO wants their child to see them like that?
He tells me over and over that he's going to kill my mother until I snap and yell at him that he has to come through me first and bloody good luck with that. I *know* he doesn't mean it and I *know* he'd have no hope in hell of hurting her; but bloody hell. After EVERYTHING my mother (especially) does for him....
He was at the hospital all day yesterday because he was a little bit outside the box; the fuckers sent him home. But his bloods are fine - so what the hell this is this time, I have no idea. Mum and J are at the hospital now and will no doubt call me when they hear something.
I figure my Wednesday night debt is paid in full and then some.
Wednesday night, I bombed. Literally. My boss, M, was woken up throughout the night by pagers going off because it was so hot. He was Ok about it, but I felt like a shit.
But; what goes around comes around (as we all well know). Mum called @ 2am - Dad was a mess. All she could understand was that he was going to kill her. So, over I go (J was on her way too, but it's me who seems to be able to put him in his box when he's nuts). He'd also wet the bed. At fifty-fucking-six. Really, WHO wants their child to see them like that?
He tells me over and over that he's going to kill my mother until I snap and yell at him that he has to come through me first and bloody good luck with that. I *know* he doesn't mean it and I *know* he'd have no hope in hell of hurting her; but bloody hell. After EVERYTHING my mother (especially) does for him....
He was at the hospital all day yesterday because he was a little bit outside the box; the fuckers sent him home. But his bloods are fine - so what the hell this is this time, I have no idea. Mum and J are at the hospital now and will no doubt call me when they hear something.
I figure my Wednesday night debt is paid in full and then some.
Monday, February 1, 2010
MY family
The whole big 'talk' was nothing more than 'liver transplant 101' given by the surgeons with regards to the transplant. Quite interesting really, but given we're not up to that point yet....
I asked why we're here listening to this; when we dont' even know if we're getting a liver yet. Basically, dad is a little further gone than they'd like; so they are 'speeding up proceedings'.
What is hard about transplanting (and probably lots of other debilitating illnesses; in this instance I think of the beautiful Jayne ) is the toll it takes on, not only your family who are related to the person who is suffering; but your own immediate family.
My parents were always wonderful, albeit selfish. They bought us both cars; but expected us to pick them up at whatever time to take them home. They gave us the world, but there was always payment for that world.
Now though, Dad is sick. 'payment' is not something that enters my stratosphere. He wants to see the kids? Fine, I'll bring them over. Want me to check your worms? I'm there.
But that sort of...loyalty? takes it's toll on my own family and, understandably, G is...baffled by our whole family set up. Our entire lives revolve around him. My sister and I can't be in the same room; because our approaches to this are just so different that we, without even trying, rile up the other.
G is hurting because I can't give him anymore than I am already giving. Although, part of me knows that I should make my family a priority - something ingrained in me just can't. I keep thinking that this may be the last time I'll talk/see/tend to his worms etc etc and I just cannot get out of that train of thought.
He's beautiful and I love him dearly. He is very confused and hurt. I understand why and part of me wants to sympathise with him and tell him that, tomorrow, I will be the person he married again.
But I can't.
I asked why we're here listening to this; when we dont' even know if we're getting a liver yet. Basically, dad is a little further gone than they'd like; so they are 'speeding up proceedings'.
What is hard about transplanting (and probably lots of other debilitating illnesses; in this instance I think of the beautiful Jayne ) is the toll it takes on, not only your family who are related to the person who is suffering; but your own immediate family.
My parents were always wonderful, albeit selfish. They bought us both cars; but expected us to pick them up at whatever time to take them home. They gave us the world, but there was always payment for that world.
Now though, Dad is sick. 'payment' is not something that enters my stratosphere. He wants to see the kids? Fine, I'll bring them over. Want me to check your worms? I'm there.
But that sort of...loyalty? takes it's toll on my own family and, understandably, G is...baffled by our whole family set up. Our entire lives revolve around him. My sister and I can't be in the same room; because our approaches to this are just so different that we, without even trying, rile up the other.
G is hurting because I can't give him anymore than I am already giving. Although, part of me knows that I should make my family a priority - something ingrained in me just can't. I keep thinking that this may be the last time I'll talk/see/tend to his worms etc etc and I just cannot get out of that train of thought.
He's beautiful and I love him dearly. He is very confused and hurt. I understand why and part of me wants to sympathise with him and tell him that, tomorrow, I will be the person he married again.
But I can't.
Sunday, January 24, 2010
D-Day
Gah.
The surgeons want to see us @ 9am Wednesday.
I'm not sure whether it is 'this is how we do it' - or whether it's 'sorry, he's had a stroke, he's out'.
D-day. and $20 says I won't sleep till then.
The surgeons want to see us @ 9am Wednesday.
I'm not sure whether it is 'this is how we do it' - or whether it's 'sorry, he's had a stroke, he's out'.
D-day. and $20 says I won't sleep till then.
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.
Saturday, January 16, 2010
Lonely
In my searches for information on liver disease, I stumbled across lots of little bits and pieces of information. I also found a few blogs by either people with liver disease, or by family of those living with liver disease.
Erin & Geoff are married with 2 young children; Geoff has already had a liver transplant and was well on the road to a new one when he started improving to the point where the American health system took him off the transplant list. Geoff doesn't sound too similar to my father - but it's really nice to read what Erin has to say and sometimes reasonate.
It's such a lonely place to be here. There is not a whole lot of knowledge out there in the community about A. Liver disease or B. Organ donation. That is a whole other post in itself; but when you talk to people about it, it's either 'smile and nod' responses or really interested ones. One of the things I have learnt on this journey are who my real friends are.
I don't say that bitterly - on the contrary, I am glad for the opportunity. I also do not blame (?) those who don't fall on the right side of the fence; I just literally now, know who I can rely on. It must be hard having a friend be so wrapped up in her own world - and again, I don't say that bitterly because I am wrapped up in my own world.
Another big problem is that Dad changes with such speed, that it's hard to keep people in the loop sometimes. In one day we went from him having lunch and feeling 'better than he has in ages' - to ICU and 'better call the family in'. Are we meant to call people at 2pm and say 'oh, he's wonderful' - and then at 7pm and tell them he's dying? I don't know what the ettiquite is there.
As of today, he's well. A bit down in the dumps, and leaking like a tap from where he was drained; but he's here, he's lucid and he can walk a little.
The problem with being so weak too is muscle wastage. He spends so much time in a chair or in a bed, that his muscles seize up and he finds it difficult to walk. But the more he walks, the better off he is.
It's just hard all round really
Erin & Geoff are married with 2 young children; Geoff has already had a liver transplant and was well on the road to a new one when he started improving to the point where the American health system took him off the transplant list. Geoff doesn't sound too similar to my father - but it's really nice to read what Erin has to say and sometimes reasonate.
It's such a lonely place to be here. There is not a whole lot of knowledge out there in the community about A. Liver disease or B. Organ donation. That is a whole other post in itself; but when you talk to people about it, it's either 'smile and nod' responses or really interested ones. One of the things I have learnt on this journey are who my real friends are.
I don't say that bitterly - on the contrary, I am glad for the opportunity. I also do not blame (?) those who don't fall on the right side of the fence; I just literally now, know who I can rely on. It must be hard having a friend be so wrapped up in her own world - and again, I don't say that bitterly because I am wrapped up in my own world.
Another big problem is that Dad changes with such speed, that it's hard to keep people in the loop sometimes. In one day we went from him having lunch and feeling 'better than he has in ages' - to ICU and 'better call the family in'. Are we meant to call people at 2pm and say 'oh, he's wonderful' - and then at 7pm and tell them he's dying? I don't know what the ettiquite is there.
As of today, he's well. A bit down in the dumps, and leaking like a tap from where he was drained; but he's here, he's lucid and he can walk a little.
The problem with being so weak too is muscle wastage. He spends so much time in a chair or in a bed, that his muscles seize up and he finds it difficult to walk. But the more he walks, the better off he is.
It's just hard all round really
Wednesday, January 13, 2010
Home today!
Dad is coming home from hospital today. He has had another 12L tapped and will come home with a bag attached to him and an open wound so the fluid can drain out of him more freely than in hospital. With that though, comes a risk of infection; but we have found every single road we take has one risk or another.
He can no longer go on duretics because his kidneys will no longer tolerate them; they shut down and nearly killed him not so long ago. So, taps, along with the risk of infection, is the order of the day.
He sounds great and really with it today. Some days he's a bit slow; the encephalopathy messes with his short term memory. But sometimes, like this morning, he's great.
We are expecting him to be admitted probably next Friday. Not because we're pessimists; but we have to be realistic with these things too.
Next Wednesday, he has to have a gastroscopy for his liver transplant profile. This entails all sorts of anti-liver disease things; fasting, low fluid and a liquid that makes him go to the toilet a great deal. Given it's such a fine balance keeping him well at the minute, this test is pretty much guaranteed to put him back into hospital. May even be Thursday; but such is life.
On the flip side; this is one of the final tests that is required for the liver transplant unit. From here, we sit down with the surgeons who decide A. whether he is a suitable candidate for a transplant, B. whether they are prepared to do the transplant, and C. what his priority number is. The priority number in Victoria means so little that it barely rates a mention - it changes almost twice daily; because liver people can go from living quite well to almost dying in just a few short hours.
And that is what life is like as a family member of a liver diseased person. Slowly, over time, you stop planning things. Or, if you do, you make sure you have plans A,B & C as backup. Because, put nicely; you have no idea whether you are going to be able to fulfill the very basic of things.
I am taking a few days annual leave from work as of today. I have worked 60 odd hours for the last 6 months - in addition to hospital/christmas/moving house yada yada. I am looking forward to doing very little else than unpacking my new house and just pottering.
Another lesson - it's all about the small things.
A small piece of trivia I never knew; the liver has over 400 functions in the body!
He can no longer go on duretics because his kidneys will no longer tolerate them; they shut down and nearly killed him not so long ago. So, taps, along with the risk of infection, is the order of the day.
He sounds great and really with it today. Some days he's a bit slow; the encephalopathy messes with his short term memory. But sometimes, like this morning, he's great.
We are expecting him to be admitted probably next Friday. Not because we're pessimists; but we have to be realistic with these things too.
Next Wednesday, he has to have a gastroscopy for his liver transplant profile. This entails all sorts of anti-liver disease things; fasting, low fluid and a liquid that makes him go to the toilet a great deal. Given it's such a fine balance keeping him well at the minute, this test is pretty much guaranteed to put him back into hospital. May even be Thursday; but such is life.
On the flip side; this is one of the final tests that is required for the liver transplant unit. From here, we sit down with the surgeons who decide A. whether he is a suitable candidate for a transplant, B. whether they are prepared to do the transplant, and C. what his priority number is. The priority number in Victoria means so little that it barely rates a mention - it changes almost twice daily; because liver people can go from living quite well to almost dying in just a few short hours.
And that is what life is like as a family member of a liver diseased person. Slowly, over time, you stop planning things. Or, if you do, you make sure you have plans A,B & C as backup. Because, put nicely; you have no idea whether you are going to be able to fulfill the very basic of things.
I am taking a few days annual leave from work as of today. I have worked 60 odd hours for the last 6 months - in addition to hospital/christmas/moving house yada yada. I am looking forward to doing very little else than unpacking my new house and just pottering.
Another lesson - it's all about the small things.
A small piece of trivia I never knew; the liver has over 400 functions in the body!
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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