It's been a long long time since I've felt capable enough to write here. So much has happened; in one sense, it feels like forever has passed since we were at transplant - in another, it feels like it happened yesterday. I have been through a whirlwind of emotions and just have not felt up to reliving it all.
After the transplant, Dad stayed in ICU for a week. It's not normal to stay in for that long, but they were very worried about his kidneys. But, they picked up and he was moved to the ward. He stayed in the ward for another week and was due to go home. On the day he was supposed to go home, he had a seizure, so he had to go downstairs to neurology for a few days before going back up to ward 8 before coming home a week later than planned.
Since then; physically, he's been coming ahead in leaps and bounds. Honestly, it's scary to think that 9 weeks ago we were seriously looking at life without him; then 9 weeks later have him back at work wanting to know what's going on. The transplant team are absolutely gobsmacked and he is trudging along in leaps and bounds.
Things they don't tell you so much about;
1. When they tell you that the medication can make you a bit hostile - do not believe them.
This week has been the first week since transplant where I have seen remanents of my
father.
He was so....angry? with the world after transplant. He got out on the Thursday and bought a car on Saturday (do NOT ask) and was livid because we dare ask if it could wait a week. I mean not just agro, but seriously livid I was called all sorts of names and spat at because I dare ask why he needed 8 smoke detectors in his house. And after everything we had been through both with and for him; I snapped. There was my threshold.
Since the 'smoke detector' incident, I have stayed away from all of my family. I felt as though mum was 'feeding' the behaviour by smiling and nodding; and I felt as though my sister was only 'supporting' him because she knew what side of the bread was buttered on. There was no way known I was going to smile and nod through that; and I just did not care how sick he was. I took the kids, my husband and myself; and locked up in our house.
I was very much 'after everything we have been through; this is the father that we end up with'; and if I'm truly honest, I did wonder whether it was a waste of an organ. My father was more worried about his car, or getting some stupid block of land in Nagambie; than realising that he has been given a second chance at life.
The drugs he was on have been reduced already - which is where we're starting to see the remenants of the man we tried to save come back. But, because we've had such a long time with 'encephalopathy dad' for so long; that I had started to forget who dad was.
At the moment, our extremely close, talking every day family, has been fractured. It's not broken, there's no heartbreak or anger or tears. When I stepped back from everyone earlier, I felt as though it was the right thing. And not talking to my sister for 3 weeks is less 'what are you fighting about' - and more normal.
I said to a girlfriend that I am feeling as though all my thoughts & feelings have been tipped around like a snow globe. And that everything, whilst it is all still there, has fallen in different places. And whilst it's different - I feel as though it's a good different.
But can I say that I'd do it again to get here? Nup. Not yet anyway.
Showing posts with label encephalopathy. Show all posts
Showing posts with label encephalopathy. Show all posts
Friday, May 7, 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.
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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