Thursday, 30 December 2010

Who rescues who?

Latest dialysis and no migraine. Whew. Have dropped to 72.5 kilos after this session so slowly getting back to normal weight. Doc says he is confident I won't end up on dialysis for good and that I will recover. Even the horrible burning indigestion/reflux is going. Not counting the chooks yet, but things are at least going in the right direction.

Getting there on the bus is fine. I just grab hold of railings and such and take not the slightest chance. Bus drivers see that and wait. 

Simon is coming next week, evidently to rescue me. Oh that will be nice, I've never been rescued before. But seriously I'm glad he hasn't been here some of the last few nights, I have been in a shocking state some of them; crying from the migraine, short of breath from fluid going to my lungs overnight in bed. The poor dear would've likely dragged me back to the hospital out of worry. It's been good to just be at home alone for a bit and get my feet back on the ground. Much rather see him with me in a better state and have some quality time with him, instead of it just being about me and my illness. 

He's up in Brisbane at the moment, got stuck looking after his son's 3 enormous dogs whilst his son and his wife went on an overseas holiday FFS. I told him he was mad at the time for doing it, even before I nearly carked it. Got to man up Simon, bla bla.... But no. The dogs are so big he has to tie the three of them to the back of the ute to get them to the fuckin park! Then let them go a bit for exercise. Then there's all this dog politics going on between them. Fucks sake! And it's been nothing but rain in Brisbane, being just south of the big wet up there. And he's trapped in Brisbane suburbia, ack, think he's been having a worse fuckin time than me. On top of all that his ex-wife has been visiting their son whilst he's there, an alcoholic who treats him like shit. 

Personally I don't know who is going to be rescuing who when he drives down next week. Neither of us are into drag so I guess there won't be any nurses uniforms involved.

Wednesday, 29 December 2010

Baby steps

Over the migraine (oh thank fuck) and today no dialysis. Am going to endeavor to go out and do the odd thing or two. Get a Medicare refund for the GP that's been sitting in the drawer for a month. Get a couple of prescriptions before my $5 safety net thing runs out end of year and goes back to before. Maybe even get a few little things at the supermarket down the road.

The hardest thing is to try not to overdo it. To have such a sudden crash in health means I'm likely to put my brain into gear before my body. Just have to keep reminding myself to take it slowly, don't do things if they seem a bit much. Patience.

I didn't have a problem asking my daughter to get the cat food yesterday though. Not much else I could do paralysed in bed with a migraine. She however I think is welcoming the opportunity to help, as it's a way to express how she cares for me. 

This whole Great Kidney Collapse episode has in many ways bought us very close together, certainly far more than I'd have expected even 6 months ago. She came in the hospital room when I was getting the Frankenstein catheter out of my neck, wasn't allowed to talk or move much for about 20 minutes and she sat there beside the bed. Could hear her crying a bit seeing me in such a vulnerable state, made worse by her losing her mother/my wife in 2006. 

It has helped to me being completely honest with her about everything. She knows about me jumping the fence, she knows about the HIV, she knows about Simon (thinks he's very nice). That honesty and knowledge has given her the wherewithal to deal with the current situation in a mature and caring expressive way. I can't imagine if all of this had been thrown on her in one hit, fuck, the hospital nightmare would've been tenfold.....

My psychologist is on leave this week, but he had one of his fellow psychologists at the HIV centre ring me to see how I was doing this morning. Wow, that is really beyond the call. So lucky to have someone like that who really does care. I'm much more than just a job to him it appears, he really enjoys helping people like me.  

Tuesday, 28 December 2010

The adventures of dialysis

What an incredibly fucked night. Ugh. Just the worst. Started getting a headache during dialysis, which worsened when I got home and turned into a full blown migraine complete with vomiting. And the pain was going down to my back as well. Was taking painkillers that usually stop anything in it's tracks, but they would only dull it for a half hour or so and it'd come back. Was crying just didn't know what to do except take more and more. 

Got daughter to buy some cat food, had run out, she came by and feed it. Was going to go myself but could hardly move from the pain. Lying there concentrating on breathing properly.... She stayed a bit, watched some telly and by the time she left early afternoon the pain was finally subsiding. Fuck I've not had a migraine like that in decades. Used to get them as a teenager and early 20's a lot, but seemed to just grow out of them. They would come but be very mild, barely even considered them migraine-ish.

And it came as fast as it went, just dissolved into nothing.  Shoulders are still sore from it so taken another painkiller to make sure the fucker doesn't come back. Ack, rather discouraging. That was some really intense fuckin pain.

In more positive news, my fluid weight put on seems sort of stable in between dialysis sessons (3 days this time) and they're continuing to take out fluid each sesson. Yesterday I dropped 2.5 kilos in the 4 hour sesson, all fluid. Felt it when I got up off the bed, legs a bit lighter and thinner, easier to walk. It's horrible all that fluid; I feel like a balloon about to pop. Ended up 73.3 kilo's end of session, started out at 75.8. I'm usually around 68-70 kilos with some clothes on.

Took a pic of one of their life saving dialysis machines yesterday whilst getting ready.

They have a lot of them there in the dialysis unit, sometimes I get assigned into a separate room of my own. I like listening to music and watching telly (they have a free flat screen telly attached to the ceiling to watch to while away the hours) and I get a touch noisy for all the old dears around me getting their treatment. 

The thing on the bottom left is where it all happens. It's like a rod filled with very fine straws and chemicals, that basically my blood flows through that over and over and it does the same job as my kidneys, taking out poisons in the blood, and I guess making 2.5 kilos of urine! Amazing machine. I got a blood transfusion through that other day as well, they put the units up on the top and somehow did it.  Or they can put fluid back in. The doctors in other depts call them "washing machines", quite funny. I'd not be alive today had I not been attached to one of them Sat week ago.

Monday, 27 December 2010

Dialysis to the rescue

Run out of steam already. Maybe my Christmas day thrill was a bit much! Felt really sick all day yesterday, had only a sandwich and that was enough. Horrible burping and reflux all night, stayed in bed for about 15 hours just tired and not wanting to do anything.

Got dialysis this afternoon, has been 3 days since the last one so maybe that's it. Am starting to urinate more though which is a very good sign. Ankles still swollen, they will take more fluid off in the dialysis today.

I was stoked when found out they could do that. Put on 8 kilos in a week from the Great Kidney Collapse, all the fluid that they weren't processing went in to my body instead. They take this fluid off bit by bit over a few dialysis seasons. Other day I dropped 2 kilos in 4 hours! I was amazed. Asked them if they'd patented it! Kidney failure/dialysis, what a way to lose weight!

Sunday, 26 December 2010

My best Christmas day for years

Things had reached a head with J, the latest x-flatmate. I had been trying to get a civilised response out of her via text in the hospital as to when she was going to be getting her stuff out of the spare room. Explaining very politely that I had nearly died and I would be spending a good deal of time at home in the coming weeks recovering, and that I would not be able to deal with her shit in doing so. I just wanted her to get her stuff and get out of my life. The initial text response was "I don't care about your near death experience...." and a short rant indicating her 'homelessness' was my fault and she had her own problems, and she didn't have any idea when she was going to get it. WTF? This she sent to me whilst I was in turmoil in the hospital.

She does however, being "homeless" and all, find it very do-able to get blind drunk at the pub 2 or 3 times a week. She's not exactly living in the park, just with relo's or friends I suppose. 

So she decides that last Thurs was going to be the day for pick up. I text her she would have to sort it out with my daughter as she was looking after the house for me and was the only other one with a key. So I am in hospital, daughter at work all day, and has made plans to go out later with friends. She waits at the arganised time for J to come. J ends up being an hour late than what she said, so daughter leaves to meet up with her friends. J can't get her stuff (of course none of this is J's fault....) J gets angry, again..... 

I finally get out of hospital Friday, and yesterday (Christmas day) sending J a very polite text asking her to check her email as I've sorted through all my appts next week and come up with times I will be available for her to get her stuff. At the end saying that whether she wanted to or not, she needed to know that I was very ill and this had to go as smoothly as possible; just get her stuff and get out of my life. I included a pic of my new plastic jewelery for good measure in case she thought I was BS'ing. 

J sends back an email, exploding vitriol and venom completely unprovoked, indicating again how much she didn't care about me and all, bla bla bla... I reply that after an email like that it was the last straw, and unless she gave me a very good reason why I should continue to store her stuff here then I would begin chucking it on the st right then and there.


I send text, "Check your email bitch". She replies, "No, I'm just going to have a good Christmas". (WTF?) I reply "Chucking now", and proceeded to do so:

It took me a while, 3 hours, as I'm very sick and weak. But I got there in the end. A nice neat pile out the front. Took pics of the neatness and sent her text "It's done".

Shortly later the local police ring, she has rung them. They say I could get charged with "malicious damage" if anything out there gets taken or broken, along with a short lecture about it being Christmas day (which I don't celebrate) and what a terrible thing to do to her. I listen calmly, they ask me to bring it back in, I say I can't I'm too weak, which leads to an explanation from me about my hospital stay nearly dying and all, only out the day before, the text "I don't care about your near death experience...." whilst in hospital, and that I was beyond caring about getting charged. I just needed her out of my life, my solicitor and psychologist would back me up on that. The police backed right down, said they would ring her back and tell her to organise it to be picked up, about a carload. 

Somebody came and got it last night. It's all gone this morning. Oh how liberating! My best Christmas in years!

Saturday, 25 December 2010

Finding peace in the new reality.

First night at home after the most traumatic week in hospital. This was the first time I'd been admitted to a hospital since being a kid in New Zealand and having my tonsils out. I was very familiar with the procedures involved, my wife having spent much time there years ago in her many admissions, but I was thrown right into the deep end from the start. I'm still in shock, still getting panic attacks about it in the night where I wake up gasping for breath and have to calm myself, as I did last night in my first night back home.

The bed was incredibly comfortable, have spent quite a bit of money on my bed, sheepskin underlay and the like, because of my back. Soft pillows, like sleeping on clouds compared to the hospital bed. Back ache virtually gone from the outset. And no mother fucking great Frankensteinian catheter sticking out the side of my neck giving me back aches and headaches! I slept blissfully for a few hours, but after a while kept waking up panicking, rapid breathing, gasping for breath. Had to take my mind to a calm place, tell myself out loud "Peter, it's OK, you're home now, your safe, you survived, it's all OK..." and my head would move to there and I could breath again, the panic going. This went on over and over.

I took some pics (just on the phone) in hospital of various bits. Not so good but felt wanted to remember the image. I really am glad I kept a diary of sorts of my days in there. It's allowed me to process it somehow and put in away in a place where it's not visible but there to see if needed. A huge huge help for me. Anyway...

These two the 3rd morning in there when I ate (for the first time in days) in front of the hospital bed windows. I'd just been moved to that room on the Ward for the emergency dialysis on Sunday.

This one is the image that I recognised out the window on that morning that it took me about an hour to figure out where I was. That was the most horrible experience. I built on that st scene to slowly expand to where my reality was now, and not in the dreams.

This is a pic of the Frankenstein thing coming out of my neck, that they put in in a hurry on the ward to do dialysis through. It certainly wasn't cosmetic, and I did quite like freaking people out in lifts with it, but it gave me a terrible back ache and headache.

This is the day leaving, and the nurse (her name was Marsha FFS) had just pulled out the Frankenstein neck life saving catheter. Yep, that mother fucking thing was in my neck, going down into the main artery into my heart.

 And last but not least, this they put in the day before leaving, and used it the last day for dialysis to make sure it was working properly before pulling out the other Frankenstein model from my neck. Took this pic just now at home on the proper camera. It's called a "Perma-Cath" and can stay there for some time, very easy to look after at home, and of course allowing me to go home and simply visit the hospital for the 4 hour dialysis treatments 3 times a week.

Friday, 24 December 2010

I nearly died in hospital special Christmas edition

I asked the kidney doctor this afternoon how long I'd have lasted had I not turned up to Emergency last Fri. He said "hard to say, but about 48 hours".

There was no internet access in the hospital, was too sick anyway even if they did have a net kiosk there. I kept the blog going though just in a file. This is what's happened the last week. I can't read most of it now, it's too painful. I'm just plastering it here.

As I’ve gotten quite addicted to the way writing shit on the plastic brain, therapeutics my crazy brain, I decided to continue my blog whilst in hospital. To my amazement, when I asked the dialysis nurse this morning if there was a net kiosk in the hospital, she looked at me in equal amazement that I even asked! WTF? I thought, staring back. Imagine that, the biggest hospital in Australia, fuck knows how many people in it on any day, all sick and still needing to pay rent, bills, do banking, access core websites that simply have to be visited every day, and no access to the internet.

Panicked, I texted my daughter to bring in my pc. When she got here she reminded me about paying the rent, which she was going to do by net as I do every week. I had to give her my banking internet password, security number, and card number so she could pay my rent from home via the ADSL2+ high speed connection. She also gave me the mail that arrived in the letterbox, all unimportant shit. It was an interesting comparison between the old and new worlds.

So for the benefit of my brain I sit here propped up in bed, blathering away into the plastic brain like the nutter that I am. The first few days below are a bit fragmented and blurred as I’m starting this on day 3 of my stay, and my mind was pretty buggered from it all on day one and 2 which are done from memory.


The Phone call. Friday 17th Dec

ASC rang, the HIV centre, after they wanted a blood test the day before. I recognised the voice of the receptionist there, nice older guy. He said he’d just been on the phone to the doctor that ordered the blood test and the results were in. Asked how I was, fucked I said. He told me that I should ring a taxi to get to the hospital Emergency as soon as possible. My liver count had gone from 60 to 900 in only 3 days. Gave a few instructions on packing bags for a few days stay, and told me he’d ring ahead to the hospital ahead of me that I was coming. The notes would be forwarded electronically from ASC to there.

Hung up the phone. Given how I felt I wasn’t surprised, but WTF? 60 to 900 in only 3 days? Good grief! Started on the mission of packing a few things, knew what to take as had done it many times for my late wife, but it became very obvious early on that my head was slow and incapable of such a task. Rang my neighbour, it was 9:30am, unfortunately he must have had a big night and was barely able to speak. In the end I decided I had enough shit to do without trying to communicate with a dead man, and apologised for ringing.

I slowly packed the bag, calming myself to do so by talking to the cat. “Just you here for a while mate”. “Meow”… Cats aren’t very good communicators either. I would get my daughter to feed it when away. Eventually I got everything done including writing a list of medicines, dosages, and times at the end with the neighbour looking blearily at me at the table. Went outside and got the cab. Only a 5 minute drive, no biggy.

Arrived there completely fucked, got to the counter and gave my details, said the Clinic had rung through before me to say I was coming. I was having trouble standing by this stage and starting to sweat a lot. Saw the triage nurse next to the counter, and was very soon led in to a bed in the Emergency Dept. My daughter arrived soon after, not wanting to go as she’d had a shock from my text asking her to feed the cat because I had to go there.

After much concerned examination, questions, and tests, I was seen by even more concerned doctors in suits. They had bought in the big guns. They ordered blood tests, and were soon back to give me an emergency procedure; they had seen the blood results and needed to do a kidney biopsy then and there. Fuck this must be serious I thought, signed the papers; and they were back shortly to do it. It had only been about 2 hours after I’d arrived.

Told me to turn over onto my front, lay my arms a certain way. This was getting really bloody scary. It was going to be a double biopsy too of both kidneys. Mucked around at the bottom of my back a bit, gave me the anesthetic local injection, and presently said they were about to do the first biopsy. A long needle thing that somehow snapped at the end but I didn’t want to look at it.

I felt the needle slightly but without pain as it went in and was maneuvered into the correct spot. There were a few interested people standing around as this certainly wasn’t something you saw everyday in the Emergency dept. Daughter was still there,concerned but also I think confident about it. I heard and slightly felt a snap as the bit of kidneys were taken. Success! The 2nd went with the same smoothness. Was impressed by their caring manner and professionalism.

Soon after was taken to a ward. Ah yes I proclaimed, the first stage of my recovery! I had made it off the emergency dept! Wasn’t allowed to move off my back, for 3 hours I think, after the biopsy. I felt like shit. Had a bad night vomiting and moaning.

Panic stations. Sat 18th.

I’d had a terrible night. The biopsy doctors came in and asked how I felt. I could barely get out of bed, and hadn’t drunk much or eaten anything all morning. So tired I just slept for most of it. Feeling sick like I was going to spew. I said I felt shithouse.

They had seen the notes of the last few hours, and decided I needed to start on emergency dialysis. To do this I needed an emergency central line put in, quite a procedure. It needed to be put in through the right side of my neck, going down into the main heart artery. I just nodded meekly in agreement, tired as hell. My wife had had it done a couple of times so I knew it was survivable, although risky.

Soon after I was being prepared for getting the central line in. In my bed in the ward, not something you see every day there. Nurses were at the door looking, along with a slightly shocked hospital roommate. Was told to lay on my back with my head near the end of the bed. The nurse gave me a morphine shot for the pain of flushing out the piss catheter earlier (OMG the pain) and the doctor a local anesthetic. Surgical towels over my face, mask for oxygen, and blood oxygen levels reader put on my finger.

Presently he started putting the line in. I felt it go slowly, again no pain. Taking his time being very delicate. Bit by bit. Knew how far it was in at every point. Eventually saying to the nurse “just a bit more”. I felt it go the last way to the heart artery. He finished off by stitching the outside part to my skin and bandaging. There was now a catheter outside my neck with two openings, one for an inlet and one for outlet. He complimented me on my new accessory, although it wasn’t as good as the nipple ring and earring.

He told me the final diagnosis was a drug interaction between the Naprosyn anti-inflammatory I had started taking recently, and the HIV pills. My HIV centre is closely linked to the hospital and had been involved from the start. They had visited me just earlier. My kidneys had stopped working completely.

I relaxed for a bit and soon was downstairs at the dialysis unit. Another new experience. They plugged me in and the machine took my blood out and did what the kidneys do before putting it back in. I felt a lot better at the end. Lots.

Went back to the ward and was feeling so well I actually ate something before bed. They moved me to a new room for the morning’s dialysis on the ward. Went to bed early. Fuck what a day, I thought. But now at least I didn’t feel sick.

Shock. Sun 19th

Had a text exchange with Simon this morning. I sent him much brighter news of my condition. He’s in Brisbane now with his son for a couple of weeks. Can tell from the texts of his relief at my ok-ness.

The seriousness of the last 2 days is only just sinking in to me. Complete kidney failure. Three emergency procedures. All happening in a space of only about 30 hours. I could have died. The suddenness of it all.

Yeah, merry fuckin Christmas I thought. What is it about this time of year? It’s fuckin cursed! Maybe the gods of fate are giving me something else of pain; changing the subject of it in a new life. It has bought my daughter closer together, and it has shown both me and Simon how much we love each other.

I was so touched by his message this morning, saying he loved me so much. He was feeling what I was. The relief of knowing I was through the worst, but the shock of it happening. Even though 1,000km’s apart, we were close and together for a few moments.

Cried a little bit today for the first time in this whole ordeal. Was moved to a new room and opened the windows up. Nice view this one. I had gotten it because the ward had no special pump for the dialysis on Sundays and had to get it fitted outside. This was the room the portable dialysis machine had the space to be put in. Sundays the dialysis unit is closed and the hospital uses a portable one for emergency people like me. I sat eating lunch after the morning dialysis in front of the windows, a strong fresh sea breeze blowing in full of oxygen. The view was nice too. My first chance to breath in two days, the first meal I’d felt like eating in a week, first chance to stop and reflect. I was in shock, thoughts muddled. Cried a bit when eating. Fuck, it was all so much.

Where the hell am I? Mon.

Day four of my stay. I woke severely in dreams. Unsure of where I was it took me some time to know. During this time I got really anxious. Dreams mixed with reality, it’s like I couldn’t get back. The sun was out and I concentrated on familiar surroundings below. There was the city in the far distant left, yes, I was still in Sydney! I looked down and looked at the street below, there were 400 buses running and turning the corner, oh yes it was Randwick and I was still in the hospital. Success! I knew where I was! But it was really cold for this time of year. Oh yes, I looked at my bag and I had come in shorts to the hospital, and the date on the pc, success! It was Dec 20th!

They came in and to take the catheter out of my dick and get rid of the piss capture device at the end of the bed. The anxiety was still with me though. Dreams were still mixed with reality. The new room I’m in is right opposite the nurse’s station. It was 2am and I could hear them talking on and on over there about political crap in the hospital, bla bla bla….on and on….eventually getting up and walking over blearily with my piss capture device in hand, and was asked if I was OK. Looking around dazed at the bright lights, I said “I’m having a bit of trouble sleeping with all the talking”. I was told that’s OK and went back to bed.

Now I was faced with the nurse who was there talking, coming in to remove the catheter out of my dick, and she had the shits with me as she made some snide comment in the conversation with the other nurse about “talking”. Shit! Talk about anxiety! Fuck! She got ready to remove it, I said to her “I’m feeling really anxious about this”, looking down at my dick. She said “You’ll be right mate, you won’t feel a thing”. I this where I pray to the gods of fate for sympathy I thought.

She squirted some lube thing in a side hole bit (aha! So that’s what that’s for I thought) and slowly pulled it out. Some blood came out, but she seemed a bit unconcerned. Well at least I didn’t feel anything. Still not back in reality though. And now traumatised by blood from my dick! Ack, what a morning. Sat on the bed breathing slowly, looking at the familiar street below. Organised myself for a shower, and took the bloodied laundry to the dirty laundry bag. Showered, shaved, felt much better. Dressed in normal clothes. Ah heaven…..

Think the reason why I’m so off my face is because I’ve started new HIV pills. They have stopped the other 2 that helped stop my kidneys along with the HIV, and given me just one now, 4 pills a day. I remember now starting before the first few days, the feeling of detachment, like not being part of my surroundings. Voices sound far off like I’d just snorted some coke. Yes that’s it! But this time seems heavier, much heavier. I’m really fuckin stoned. Almost like after a line… and the bit where you go “fuck…….fuck…..”

It’s later in the day now and it’s been a bad one. The pain monster has paid a visit. I’ve realised I just won’t be able to talk about this for a while to anyone really. I just end up in bits.

My GP rang when I was taking my first walk out the ward on my own. Normal clothes, no thing in dick. Everything out of my arms, although they’re bruised as hell from people getting veins in them. Dick leaking a bit of bloody fluid but not painful, just using little bandages in there, doc says it should be fine.

Anyway my GP rings as he’s been told about what happened, I go to a quiet corner as I’m downstairs where the shops are. He’s the one who prescribed me the Naprosyn that started off the whole chain of unforeseeable events. He was very concerned. We’re both adults, we both know it was nobody’s fault, but fuck what a phone call… I can’t even write about it…. Afterwards I went into the hospital chapel, some interdenominational thing. Small quiet space, nice, just needed somewhere to release… Let it out, break down, the pain monster had me…fuck…..

My psychologist has just rung me. I’m hooked up to dialysis and give him the story. Tell him I’m just not going to be able to talk about it for a while. I got to the subject of the phone call with my GP and break down on the phone to him. He’s coming to see me tomorrow in the hospital. He’s one of the ones who went beyond the call last year and saved my life. We will likely just chat while I’m in the dialysis unit.

Good news is the blood results are heading in the right direction; they are down from 900 to 650. Way to go yet to get to 60 or so, but heading the right way. I survived. So close to death but I survived. Sobering.

Psychologist says I never cease to amaze him at the disasters I encounter. But it happens, it happened, nothing will change it.

Emotional overload. Tues.

Today I’m very drained emotionally, overloaded yesterday. Flat. Too scared to think about anything. The pain monster has had me over the last 24 hours, ravaging me, digging it’s claws in, throwing, mauling. I’m broken, flattened.

A day off from dialysis today. Have just been in bed resting and feeling the shock. They took a lot of blood this morning for many different tests, seems I’m over the worst of it. I asked about the prospect of home and they are looking at by Christmas. Change the central line to a more permanent and manageable better one, and I come in as a day patient. Sounds good to me. I only live 4 bus stops away from the view from my window now, and am very mobile. That has made me feel a bit better.

They also said there’s no way I will be ready for work in the 3rd when I’m due back. The social worker came and saw me this morning and said something about disability benefits through Centrelink, sort of sick pay when you have no sick pay left at work. So I will have to look into that with her, she’s coming back to see me tomorrow about it. Doc is talking about another month off work after when I’m due back. Sounds good to me if it can all be worked out.

They had me see the eye doctors downstairs this morning, why not for free? The grand result was that I need glasses, der. I just haven’t bothered. Am just getting the bus and going to work. Don’t have a license they took it when I got drunk. They did suggest a sort of general 1 or 2 strength thing from the chemist for reading, just a stop gap. Much cheaper might look into that.

Psychologist I normally see is paying a visit this afternoon. Being as I’m too scared to think about anything, I dunno how far that’s going to get. But very appreciative of the visit. Comes at a good time. Feel as if I’ve been clobbered into the floor again and kicked in the head. This one has been right out of the blue, and knocked me for a sixer. Dunno where I’m going from here. I wont be the same again after this one.

Maybe it’s time to quit work. It’s hugely draining on me. Lifting 3 tones of paper a day may not be an option anymore. If I can get by on sickness benefits it might be worth looking into that.

Psychologist has been, quite a good visit. Very understanding as always. Good timing. Discussed the implications of realising how close I came to death. The shock I was experiencing. He is away next month but will get a colleague to check on me by phone when away. He really cares this bloke.

Text war with latest x-flatmate. Over it. May chuck all her shit on the street if she doesn’t get it soon. Sounds fuckin heartless, but why should I store her stuff so she can get pissed at the pub? Instead of spending her life in self pity and a drunken stupor, a bit of proactive life decision wouldn’t go astray.

After 8 now, going to bed. Simon may ring after 9. I feel a bit better after today. Writing it seems to help me release the emotions involved. Give a space to put it where I know where it is but don’t have to go back and look at it. I can’t read now much of what I’ve written above, it’s just too painful. But I know it’s there if I need to, a monument to another encounter with the pain monster.

Dept head rang from work just now saying he would do everything he can to implement the sick pay without sick pay thing through Centrelink. Only found out about it couple of days ago through the OH&S lady at work himself in discussions about me. Looks like a goer. Wonderful.

Sick. Wed

Bad start. Terrible night. Intense pain upper middle back, down along shoulder and running up right side of head. Terrible pains in stomach. Burping all night. Couldn’t sleep since about midnight from it. Ugh. Was in distress by the morning. Sitting here with oxygen (that seems to be the cure all – “give you some oxygen mate”) tube across my nose. Quite refreshing really. Doesn’t seem to be too magic though.

Today I get the central line traded in for a new spectacular all guns firing home version. I think that means that it’s not as easy to freak people out with it. The present one when I get in the elevator there are these stares of horror, delicious. I do have very dark humour. It’s actually quite fun looking a lot like Frankenstein. I am missing the head bolts though which is a bit disappointing.

Also on the itinerary for today is another thrilling installment of dialysis, as well as tomorrow. I might even get home tomorrow afternoon, but I really think looking more like Friday. Daughter keeps asking when, she’s quite upset about it obviously. Especially this time of year would be bringing back all the memories of her mother in hospital at Christmas.

Just found out, am getting the glorious new central line in at 9am, and the dialysis after that. Oh the excitement! Stay tuned…

OMG, my central line makeover! It’s a tragedy! The ward got their paperwork wrong and it isn’t happening until tomorrow! Arrggh! The disappointment!

So here I am in dialysis still with the Frankenstein version. I am getting a blood transfusion today with the dialysis, the first ever over my life. My red blood cells are low and not coming up, and it’s hard to breath properly at times as the oxygen isn’t getting into my blood very well. Am also getting about 2 kilos of fluid taken out as well, I am 8 kilos heavier than last week. When my kidneys shit down all the fluid I was drinking was going into my body and not being made into urine. Legs and ankles very swollen and sore from it right now.

Have had about half an hour of dialysis so far. Already am starting to feel a bit better. The terrible reflux in my stomach seems to be less already.

Work dept head rang earlier; he has swung it to get the company to pay me half pay all of Jan. Very good. Wasn’t expecting it at all, really don’t give a fuck at this stage anyway, but he went out on a limb with me today over it so am very appreciative. Obviously will get reviewed at the end of Jan if it’s still needed, but hopefully not going to need much more dialysis after that FFS!

I think one thing about this disease is recognising the knockout punches when they come. This has been one of them.

Rising from the ashes. Thurs 23rd

I am now in proud possetion of my new take home all guns firing “Perma-Cath”, or Central Line into the heart. I’m very pleased with this new accessory, as the two valves for blood dangle quite nicely next to the nipple ring. Rather aesthetic. They will test this out in the dialysis unit tomorrow and if it is working fine the other Frankenstein neck one will be taken out a couple of hours later. And after that…..

Tomorrow I go home. They do try to get people home for Christmas. Not that I celebrate it, but getting home from the war by Christmas sounds very pleasant.

So I will be going home changed. Two weeks ago I was healthy. Today I’m sick to the point of needing a two liter blood transfusion yesterday on top of the dialysis. Healthy to nearly dead and starting a slow recovery back from that, in such a small space of time is really taking a while for my head to get around. This is an insidious disease, smart little bug. Just when we think we have the upper hand, just when complacency sets in, it throws us a curve ball like this. Out of the blue, right out of left field, it delivers a knockout blow.

But I survived. Fuck knows I wouldn’t have had even the smallest circumstances been changed. Had that last blood test not been ordered by the vigilant HIV specialist, I wouldn’t be alive today. Had I not been so near and have access to the biggest hospital in Australia with I guess worlds best HIV treatments available along with analysis of problems, I wouldn’t be alive. Had the information not flowed so freely between the HIV centre and the hospital I’d not be alive. Yes, I’ll take the knock out punch and move on, but it was only a knock out punch, not the killer blow (not quite).

I don’t know why fate has seen it fit for me to come so close to death, to be mauled by the pain monster for days on end, to endure the tragic loss of my health for some time. But fate also saw it fit for me to not die, but live and go on. From that I now feel I’m on borrowed time. Any life after this is a bonus, some kind of blessing from the universe.

Today I’m changed, will never be the same again. Life is precious, a gift from the gods, a chance of fate. I have been given another chance, a new beginning….


Going home. Frid Dec 24th

Getting an early dialysis treatment. Have to wait 2 hours after to make sure the new “Perma-Cath “ has worked properly and get the other one taken out, then discharged.

Feeling very emotional right now. So many different ones. Mostly huge relief. But also a wonderful feeling of peace. This isn’t the end, despite how close it came to being. This is a new beginning.

Friday, 17 December 2010


Still getting over the bad news yesterday, had a terrible night. Kept waking up about every 15-45 minutes, then would fall back to sleep. Can't remember them but was having weird nightmares all night. Maybe not so much nightmares but a feeling of dread. Like something was really wrong. Can't put my finger on it. 

Then I'd remember bits and pieces, was having conversations with people. Then during the many periods of being awake I couldn't remember if I'd actually had those conversations the day before or they were from the dreams that night. Ugh... I guess the ones I don't remember anymore are the ones from my dreams. Must've been in a state of half asleep and half awake most of the night, my perception of reality blurred.

Told Simon last night of the days bad news during his nightly phone call. He seemed a bit shocked, am wondering if I should have waited. He seemed almost in a bit of shock. Oh well too late now.

Just got  phone call, I have to go to emergency re yesterdays blood results, now...... RED ALERT!

Thursday, 16 December 2010

Bad news from the HIV centre today

My liver is fucking up.

They took a blood test yesterday there because of the vomiting. Doc wasn't happy at my GP's assessment that it was likely something I ate. So got most of the results back today from the test and my liver had very high readings. Am low on red blood cells. No wonder I've been feeling really fucked lately! The readings were a bit elevated 3 months ago but nothing much to be concerned about back then. 

Doc will ring me tomorrow with the last bit of the blood test results, those simply to rule out Hep C. They think it's likely the two white HIV pills, which for some people can affect the liver. If so I'll have to stop the white ones and have my medication reviewed. 

It's all a bit scary. 

However I do know there's a lot of these drugs to chose from, and the doctors involved with my care are very much aware of. I have full confidence in their abilities. These are only the first HIV pills I ever went on, the complication (if so) being to do with a side effect. They have been marvelous at clobbering the HIV.

At the moment I'm incredibly tired (oh happy days are here fuckin again) and my skin is a bit itchy now and then. Ate some plain boiled potatoes a short time ago and they seem to be fine in my stomach.

A whole week off work

What a fuckin shit of a week. Monday I had back pain, took pills overnight, then was too out of it for work. After seeing doc Mon about that and him giving me 2 days off, I was back at docs on Wed after spending the day before spewing like mad. Like a few scenes from the fuckin Exorcist FFS! Couldn't even hold down water. 

I finally ate a small sandwich last night, and kept it down after much burping and the like. But it had been 2 days since I'd eaten anything. It was touch and go with the HIV pills, with me gently rubbing my stomach to help them to stay down. It appears to be finished now, but it's left me very weak and very dehydrated. 

Rang work this morning and there's not much point going in tomorrow (Fri) like that. Fuck knows how short I'm going to be with money after this, hope that money from the Super account is on it's way soon.

Wednesday, 15 December 2010

The Sydney U2 concert!

I would have to say the best out of the 4 U2 concerts I've been too. The way it was all put together, the sound, the visuals, the whole thing blending with the audience in such a way as to make you feel like you were in a much smaller venue. Dunno the head count but it must have been around 80,000 I suppose. It often felt though that the way the band and audience were connected that we were in a pub.

It was less theatrical than past shows, just being about the songs themselves. The band has lost non of it's vigor over the years, and Bono is brilliant. 

Took heaps of pics. Some of then (the first one is pre-concert):

Car crash right outside my house

I heard loud screeching of tyres, then a big thud. Within 3 seconds I was at the front window to see what had happened. First there was a big cloud of dust that quickly blew away, to reveal.... OMG! I grabbed the camera that was all charged up for the U2 concert and went out to take a pic. There was lots of neighbours coming out to view the carnage too.

No idea how it happened. No other cars involved at all.

A new blog link

There are so few blogs around like this. Like my one, it's simply the day to day experiences of an HIV+ person. I've put it in the Links thing to the right as well as here.

Dave's life living with HIV

I usually write without any thought as to who may be reading. I set this up for me as a way to sort my head out on a very regular basis. If people find it interesting to read then that's a plus. And I guess the more people realise that an HIV+ gay man is simply a person like everyone else, just living life, etc then the discrimination and stigma may also be reduced.

Monday, 13 December 2010

Alcohol withdrawals

I don't believe it! I didn't think I was drinking enough beers to get withdrawals FFS! *sheesh*

The last week I've been having terrible muscle aches, mostly in my back as that's always tight from work anyway. I mean really bad. The sort of deep aching that spreads to your whole back and arms and legs, shoulders and neck giving headaches as well. My whole body hurts in the end. The only thing that stops it when it gets bad is 2 strong painkillers at once. That's more than I was taking with my knee earlier this year. 

Went to doc today, couldn't go to work as could hardly move this morning, as has been other mornings. I suppose if I'd pushed myself I'd have got there, but what then? Lift 3 tonnes of paper through the day as per usual? Had been taking painkillers through the night but the ache kept coming back to where everything was hurting again. By the time morning came and time for the added anti-inflammatory pill the pain had finally nearly gone, but I was off my fuckin dial on pills. On top of that I had nearly run out of painkillers. The situation was dire.

Texted work (supposed to ring but fuck it) giving a slightly coherent summary of the direness of the present situation, saying I was "spaced out" and "can't come like this". If nothing else the text would have convinced them that I was in fact off my face. Went to doc in morning, explained how I'd not been going to the pub after work after ages of doing so (about 6 beers a day) and asked if that may have something to do with it. He agreed it did, although it was still a good decision to reduce the beer. Said it should settle down in a few days. Gave me Valium to relax muscles and a bigger script of pain pills. And two days off work.

What made me ask him if it was the alcohol withdrawals causing the aching, was I remembered an old bloke I was talking to years ago. He was telling me about how he used to drink such a lot, bla bla... and then stopped. He said "I'd never had so many aches and pains in my life".

So there it is, I'm suffering severe muscle aches from alcohol withdrawals. Fucks sake! It's not so much the amount I was drinking, but the fact that it was a constant amount over a long period. The body eventually relies on the alcohol somehow to function. I had no idea that this was going to happen.

Ironically I still don't feel like going to the pub much anymore. I'm not having any problems at all with some kind of uncontrollable desire to do so, really enjoying the spare time and clear-headedness. I'm just really surprised that by cutting back to only a very little consumed over an entire week would have such a major effect on the body. I still drink a bit, just not nearly as much is all.

It's U2 day today! A day for my daughter and I

It's finally here, going to see them at ANZ stadium (originally the 2,000 Olympics). We're quite high up in the stands, so I dunno what the view will be like, but that's good enough for me. I paid $120 each all up for the 4 tickets, some of them were bloody $300. As Simon isn't going, being needed at his place last month or so, friend from the pub is coming. Along with daughter (AR) and one of her friends.

The last one, Vertigo, was after my wife/AR's mother died a few months earlier. AR is also a big fan of them, unlike a lot of her friends. It's as much about going with me as seeing the band she told me the other day. We had a great time then, but things got very bad between us for some years after that. I do hope this will be a landmark in our relationship getting better. 

She has seemed genuinely worried about me of late. When I ceremoniously announced to her that I was not going to the pub through the week, she said that was good as she'd been concerned about how much I was there. We went on to have a very good discussion about things, the conversation flowing freely. There seems to be a connection there now that wasn't before in the screaming arguments. And I've been very honest with her, she knows everything, about Simon (thinks he's nice) and the HIV. 

And honest about my mental state. She knew I was near suicide last year, when she found out was when she started trying to rebuild things. I've told her lately as well about how I'm feeling with Christmas and the new year season, that it's not a good time as I often relive the memories. She actually understands and realises now some of the extent of my pain, instead of being completely self centred on her. 

Sunday, 12 December 2010

A Christmas card I can live with

Stopped sending them years ago, and only get the odd one or two now. This one I thought was hilarious. The front:

And inside:

HIV guilt

It's been on my mind recently, perhaps a hangover from some attitudes that unfortunately still exist in certain pockets of the community. And reinforced by a particular GP I was seeing at the time, when I told her I was HIV+ she became very judgmental; "Well I am surprised, you're a big boy now". WTF? This was after I'd been seeing her for 4 years and she knew the dramas I'd been going through. I never saw her again after that. Apart from just being diagnosed with it and the last thing I needed was to be moralised to, she was putting the blame fairly and squarely on me for getting it. 

Of course there are those who vocally assert that I would deserve to get it for being gay citing my behaviour as a moral blight on society, but I'd never have expected such judgment to come from someone I trusted as a medical professional. I'd assume she'd not be so with someone who'd been diagnosed with type 2 diabetes (caused through lifestyle) or someone with a skin cancer melanoma from not taking precautions in the sun (can be deadly). Imagine her saying to someone just diagnosed with lung cancer who'd smoked for zonks "Well I am surprised, you're a big boy now". Then why was she saying it to me?

Are some diseases dirty diseases, and others clean? By getting HIV does that mean it's a dirty disease, and a reflection of my moral character? Of course not, yet it's surprising even today the level of discrimination there is regarding HIV even within the professional community. 

My assertion is that HIV is simply a disease like any other. Medical science doesn't discriminate in researching a cure and treatments for it. You'd think at least the medical professionals who's charter is to treat the ill would also not discriminate.

And yes, I got it through unsafe sex, at a gay sex club. If there was any sort of conservative Christian view of debauchery I don't think you could go much further than that. Was it my fault I was mentally unstable at the time? Was it my fault I didn't care? Was it my fault the other guys didn't use condoms? It takes two (or more) to tango. Bottom line is I deserve just as much care and attention as with any other disease, and just as little judgment. 

Saturday, 11 December 2010

Regaining control

There's been much that I lost control of over recent years. I used to be a very good planner, organising things with no problems. Today I'm barely able to organise one day at a time. It all just seems to hard. I also lost it with money, something that I was always very capable with. It was like money, order, and the general things that get you through life efficiently, all just shut down. The focus was survival. I came very very close to not making it. It became about how I was feeling, and doing anything that would limit the pain or help me to feel a bit better for a time.

I freely admitted even last year that I took Ice (and other associated drugs) on occasion simply because it gave me a break from the pain. For a few hours, or even over a weekend, it was just about having mad sex completely off my dial. Yes I knew I'd have to come down and go to work, but even when I did I appreciated the time I'd had away in another world; the break. People with me knew that too and made sure in those times of sex and drugs away from reality, that I got that break I needed.  Who'd have thought in such a debauched world that friendship and concern for others would manifest itself. 

As with drinking, I didn't care about how much money I was spending. It was all about how I was feeling, and if a few beers made me feel better for a bit then money was not the issue. Of course I see now that I was living rather beyond my means for quite some time. But it helped me get through. I've ended up in debt, but I don't regret those times.

Strangely, it may still be in a sense even now about how I'm feeling, as opposed to the responsible ordering of life. I don't feel like drinking every day anymore, and I have no problem at all in not doing so. Don't feel like getting completely munted on Ice. The present reality isn't one I want to escape for a while, but one I guess that has a lot going for it. Simon and I love each other, I have a secure well paying job, I live in a nice city, have a beautiful daughter, and on and on.

So I embark now on regaining control. Have arranged to get the last bit of money I can apply for out of my Superannuation account to pay off a big portion of the debt, and in stopping drinking like a fuckin fish I will likely be in a much better position to pay off the rest of it. I reckon at least $100 a week. It is a very empowering feeling too to be making such solid and beneficial decisions now. 

In hindsight the beer and the drugs didn't have a hold on me, I've always been too independent and had too strong a personality to give up control like that to an outside force. I was always in control, I just wanted to get wasted that's all. My decision. I never had a problem having drugs then coming down, not touching them again for a month or two. And it's almost surprising to me the ease of which I've suddenly decided to not spend a small fortune at the local pub. I just don't feel like it anymore. 

Friday, 10 December 2010

U2 are here in Australia!

Bono launched World AIDS day in Sydney 1st of Dec, the Opera House being lit red.

They have already played in Brisbane, and I will be seeing them here in Sydney Monday. Couple of Brisbane Pics.

Thursday, 9 December 2010


A definition:
A desire of some good, accompanied with an expectation of obtaining it, or a belief that it is obtainable; an expectationof something which is thought to be desirable; confidence; pleasing expectancy(link) 
Hope is something precious. To lose it in times when things are bad is to lose the will to go on. Trudging through life, unable to find much of a reason to get up on the morning. Why get up only to endure more pain and dramas? Why keep going when it will never get better? Or if it is to get better it will be so far off into the future as to be meaningless at present. The pain is too much to endure, with no hope felt of improvement. Anguish at the loss of a future. Condemned to live in a dark world of misery. You feel you are not in control, and give up control of your life.

To find hope after losing it is something very precious. The veil of darkness lifts around you, and you can see new possibilities and ways of doing things. You see an end to the pain, and a different way of looking at it. You see that it will get better. You take control, you make things happen. The anguish goes, the sense of loss fades. No longer in darkness and misery. Your whole outlook changes. To find hope after being without it for a long time, is a life changing event.

I have found hope again. It's been years, the tunnel continuing on and on and on... Years living with little or no hope. Years of anguish, years of pain, years of darkness. Years of being out of control. It's over, finally over. I have hope for the future now.