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.
Friday, May 7, 2010
Saturday, March 6, 2010
The transplant we never thought we'd have.
Well, here we are on the other side of the fence. I never in a thousand years expected to end up here.
We got to the hospital at 5am to see dad off and we all howled. The three of us didn't expect to see him again because he was so sick. At that point, we didn't know it was going ahead; they prepare for surgery just in case because of the time factor. The other half of the team were checking out the donor liver for compatibility, so this could all have still been rewound and back up to the ward.
We said goodbye @ 7am and the transplant co-ordinator (Kate) said that we'd know by 8.30ish whether the surgery was a go or not. We hung around the hospital with the social worker for half an hour; then went back to mums to wait.
Sure enough; 8.30 rolls around and it's batter up. He's in. From that point, I could not have possibily sat around waiting for news, so I left mum and J to it and went into work. Brain was completely fried, but it was better than doing nothing.
Every couple of hours we received updates. 'Liver has been disconnected/new liver connected but not running/liver up and running/liver put into his body/stitched up' All of a sudden it was 4pm and we were asked to meet the surgeons at ICU.
'The operation went exceptionally well' we are told. There were still issues with the kidneys; whether the 'old rattlers' would hold up after they threw a wobbly. All the organs were expected to throw a tanty; but whether the kidneys threw their final wobbly was the worry. They couldn't 'kick start' it this time; the liver was far too new to be pulling blood from, so the plan was to go straight to dialysis and get a kidney transplant.
That was Thursday.
We're now at Sunday and things are still looking really good. I still can't get my head around actually being here; whilst we have had positive news thus far, we are still concerned about the kidneys; but the longer they remain working, the more likely they are to remain working.
So, we wait for him to get back up to the ward and then home - then we attempt to pack up what is left of our lives and move on with it.
It has only been the last week that I have really seen just how tattered it all is. I hope I can put some of it back together.
We got to the hospital at 5am to see dad off and we all howled. The three of us didn't expect to see him again because he was so sick. At that point, we didn't know it was going ahead; they prepare for surgery just in case because of the time factor. The other half of the team were checking out the donor liver for compatibility, so this could all have still been rewound and back up to the ward.
We said goodbye @ 7am and the transplant co-ordinator (Kate) said that we'd know by 8.30ish whether the surgery was a go or not. We hung around the hospital with the social worker for half an hour; then went back to mums to wait.
Sure enough; 8.30 rolls around and it's batter up. He's in. From that point, I could not have possibily sat around waiting for news, so I left mum and J to it and went into work. Brain was completely fried, but it was better than doing nothing.
Every couple of hours we received updates. 'Liver has been disconnected/new liver connected but not running/liver up and running/liver put into his body/stitched up' All of a sudden it was 4pm and we were asked to meet the surgeons at ICU.
'The operation went exceptionally well' we are told. There were still issues with the kidneys; whether the 'old rattlers' would hold up after they threw a wobbly. All the organs were expected to throw a tanty; but whether the kidneys threw their final wobbly was the worry. They couldn't 'kick start' it this time; the liver was far too new to be pulling blood from, so the plan was to go straight to dialysis and get a kidney transplant.
That was Thursday.
We're now at Sunday and things are still looking really good. I still can't get my head around actually being here; whilst we have had positive news thus far, we are still concerned about the kidneys; but the longer they remain working, the more likely they are to remain working.
So, we wait for him to get back up to the ward and then home - then we attempt to pack up what is left of our lives and move on with it.
It has only been the last week that I have really seen just how tattered it all is. I hope I can put some of it back together.
Wednesday, March 3, 2010
Wow. All over Wow.
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?!?!!
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?!?!!
Sunday, February 21, 2010
Lots happens in 10 days.
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.
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.
Monday, February 8, 2010
At this stage..
We're at a no. Not until they can work out and control these seizures.
I expected it; I'm better than I thought I'd be.
He got out of ICU yesterday and is now back to 'normal'. He remembers me yelling at him which is incredibly weird; usually he remembers nothing.
I expected it; I'm better than I thought I'd be.
He got out of ICU yesterday and is now back to 'normal'. He remembers me yelling at him which is incredibly weird; usually he remembers nothing.
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.
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