The cleanup

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.

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.

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?!?!!

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.

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.

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.

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.

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.

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.

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.

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.

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

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!

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.