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.
Sunday, January 24, 2010
On the ward again....
Back up to 8 west (liver land) and is starting to pick up a bit. He's horribly depressed this time though; I'm reluctant for the kids to even talk to him on the phone lest he ends up in tears.
Hopefully we'll find out more about these last couple of tests today too.
That is all today.
Hopefully we'll find out more about these last couple of tests today too.
That is all today.
Friday, January 22, 2010
Friday 22nd January
It's funny with this whole road. Usually, I know what I have said and who I have said it to - but with this, I always have to check where the person I am talking to is up to - it all changes so fast!
They are saying that these seizures have been happening for awhile (how long is awhile anyway?) and that we'd must not have seen them. I have to wonder about that; because it's incredibly coincidental that, for the entire time he has been left alone these last few months (maybe an hour here and there maybe twice a week?), these seizures have happened?
My father loves my boys. As in, lives for them loves them. He was completely different as a parent - always working, never home, etc - but for my boys - nothing is too much to ask.
He has their photos all over his office and used to call once a day to see how they were. If he didn't see them for the week, he'd be up at our place first thing Saturday morning to take them somewhere. He loves those kids with his entire being and I'm sure him not seeing them is hurting.
It was R's birthday yesterday. We'd decided pretty early on that, whilst he was in ICU that we weren't going to tell him about R's birthday coming up. It would really upset him - and given there is not a damn thing anyone can do about it, we felt it better if we didn't tell him.
I'm glad we didn't.
Mum and J went a few times yesterday because he was asleep for most of the day. He required sedation for the MRI (restless) and, combined with the anti-seizure medication, made him exhausted.
Before we had R's birthday dinner the three of us went in. Mum is very real, like me, but clings to the hopeful world that my sister J is in. This is all like a scratch on the knee for her and he WILL BE FINE SHEL. I get why mum swings between us for support; she knows the deal and knows what is coming, yet sometimes it just hurts so much it's nice to live in hopeful land for awhile.
Whilst we were 'half time change sides' (you can only have 2 in ICU and we were rotating); Mum had gone to swap with J. Dad told me that he's thinking of not having a transplant.
'I'm a dud dad Shel' he says to me sadly. 'I don't know that I can go through with all this'
'What do you mean' I ask.
'The transplant. I don't think I want it'.
Some people are completely FOR saving life. At all costs. 'What do you mean NOT WANTING IT?? You are having it' type view. And part of me wishes I could be that person who steers our family to victory here.
But I can't. I cannot see it as right that I ask him to do it for me. This is his body, his life and his journey.
And seeing what I have seen - how could I possibly judge him for not wanting to continue the road? I will support him 110% in whatever he decides to do. Whatever that is. It is going to kill me when/if he goes - but I would feel incredibly cruel if he prolonged it to keep me happy. I will not do that to him.
Late last night mum called and told me that he'd been moved out of ICU and into a ward. Mum said 'who the hell leaves hospital at 10.30 at night??'
'The dead ones' is my reply dryly.
Transplant hopes - we have no idea. We have to wait for the tests to be done - there is a gastroscopy and a colonoscopy to go; but he needs to be well enough for them. They are pretty shitty tests for a liver patient - you have to fast, no liquid and they give you duretics to clean out your bowels which will probably mean weaker and in hospital - but the sooner it's done, the sooner we can know the next step - if there is one.
They are saying that these seizures have been happening for awhile (how long is awhile anyway?) and that we'd must not have seen them. I have to wonder about that; because it's incredibly coincidental that, for the entire time he has been left alone these last few months (maybe an hour here and there maybe twice a week?), these seizures have happened?
My father loves my boys. As in, lives for them loves them. He was completely different as a parent - always working, never home, etc - but for my boys - nothing is too much to ask.
He has their photos all over his office and used to call once a day to see how they were. If he didn't see them for the week, he'd be up at our place first thing Saturday morning to take them somewhere. He loves those kids with his entire being and I'm sure him not seeing them is hurting.
It was R's birthday yesterday. We'd decided pretty early on that, whilst he was in ICU that we weren't going to tell him about R's birthday coming up. It would really upset him - and given there is not a damn thing anyone can do about it, we felt it better if we didn't tell him.
I'm glad we didn't.
Mum and J went a few times yesterday because he was asleep for most of the day. He required sedation for the MRI (restless) and, combined with the anti-seizure medication, made him exhausted.
Before we had R's birthday dinner the three of us went in. Mum is very real, like me, but clings to the hopeful world that my sister J is in. This is all like a scratch on the knee for her and he WILL BE FINE SHEL. I get why mum swings between us for support; she knows the deal and knows what is coming, yet sometimes it just hurts so much it's nice to live in hopeful land for awhile.
Whilst we were 'half time change sides' (you can only have 2 in ICU and we were rotating); Mum had gone to swap with J. Dad told me that he's thinking of not having a transplant.
'I'm a dud dad Shel' he says to me sadly. 'I don't know that I can go through with all this'
'What do you mean' I ask.
'The transplant. I don't think I want it'.
Some people are completely FOR saving life. At all costs. 'What do you mean NOT WANTING IT?? You are having it' type view. And part of me wishes I could be that person who steers our family to victory here.
But I can't. I cannot see it as right that I ask him to do it for me. This is his body, his life and his journey.
And seeing what I have seen - how could I possibly judge him for not wanting to continue the road? I will support him 110% in whatever he decides to do. Whatever that is. It is going to kill me when/if he goes - but I would feel incredibly cruel if he prolonged it to keep me happy. I will not do that to him.
Late last night mum called and told me that he'd been moved out of ICU and into a ward. Mum said 'who the hell leaves hospital at 10.30 at night??'
'The dead ones' is my reply dryly.
Transplant hopes - we have no idea. We have to wait for the tests to be done - there is a gastroscopy and a colonoscopy to go; but he needs to be well enough for them. They are pretty shitty tests for a liver patient - you have to fast, no liquid and they give you duretics to clean out your bowels which will probably mean weaker and in hospital - but the sooner it's done, the sooner we can know the next step - if there is one.
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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