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.
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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 kidney 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
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 Randwick
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…..wow….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
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…
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
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….
DAWN…..
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.
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