Where the hell have I been?

December 31, 2010

First, an explanation: I realise most people reading this know what happened, at least the core details, but in case you don’t, let me explain why there’s not been an update in almost a year. This is going to be a very, very long post. Also if you’re squeamish you may want to read with one eye closed…

I got sick this year.

Very, very sick.

As in very fortunate to still be alive sick.

So how did this wacky journey start? In February I had a gallstone. Woke up one Sunday morning and had this mild to moderate pain in my abdomen. This was during the Olympics so I basically laid on the couch all day trying not to move while watching Canada kick ass.

The pain got worse. By Thursday it was almost unbearable. The pain had moved from the top of my abdomen and then slowly down the right hand side. I went to the nearby Medicentre. After a three hour wait I saw a doctor who told me I most likely had diverticulitis. I had already researched this as Brock Lesnar of UFC had recently had it and it was in my mind. Diverticulitis is an inflammation and infection of one of the sacks lining your intestines. In other words it would cause a pain THAT DOESN’T MOVE! (Having mentioned all this to many other medical professionals this year, they agree that the diagnosis was complete nonsense.) I knew the doctor was wrong and trudged home almost in tears from the pain. Once again, like so many times in my life, the medical profession had proven to be completely worthless.

Without being too graphic, let’s just say that a few days later I “passed” something, a lot like Nibbler in Futurama passes if you know the reference, and I thought that was that. I didn’t feel that great but figured it was over now.

About a month later I woke up on a Wednesday due to back pain. I tried moving. It didn’t change. I got up. The pain got worse. After about 20 minutes of escalating pain I asked my wife to call an ambulance. The previous day I had moved a bookshelf. I hadn’t moved the books off it first. Why? Because I’m strong and stupid, that’s why. I figured I’d really hurt my back. That, coupled with my usual back problems, seemed like the obvious answer. The ambulance arrived, asked me a bunch of questions and took me to Leduc. Yes, I live in Edmonton, but all the local hospitals were busy so they drove me about 25 minutes out of the city while pumping me full of painkillers. Lovely, lovely painkillers.

I was stuck waiting on a gurney in a corridor for a couple of hours before I got wheeled into a room. The nurse came in to see me and shot me up with another painkiller. This was round about 3pm. I was still in considerable pain but it took the edge off. I slept. Then I was woken and told they were booting me soon. I said I still felt awful and could I stay a bit longer. They reluctantly agreed. About 20 minutes later the pain became excruciating and for the first time in my life I started quite literally screaming in pain. Nobody came. The nurses ignored me for at least an hour. The room was right across from the main nurses station and yet not one person came to check on me for over an hour. The doctor dismissed my pain and discharged me and called a cab for me to get home. A cab which ultimately cost us $50!

Whacked up on painkillers and in damn near crippling pain I woozily stepped outside to wait for the cab. I eventually got home feeling like death and went to bed.

Woke up Thursday feeling a bit better. Nowhere near as much pain. Figured whatever it was was getting better. Both my wife and I failed to notice the yellow tinge to my skin. (Foolish mistake number one.)

Friday comes and I’m starting to feel fairly horrid. Pain is still there. I’m tired. Just not feeling well. Saturday my wife had a get together scheduled here for a group she’s a member of. I was feeling very ill and just stayed in bed. I don’t recall if I even got up that day. I didn’t eat. My wife had gone out to buy some things and I asked her to buy me some Sprite. She also made me some iced tea.

That night I remember having a lot of trouble sleeping and, for the first time in 16 years, I felt like I was going to throw up. I did start to throw up but nothing happened. I went to the bathroom and noticed my pee was very, very dark. I ignored this and assumed I just hadn’t been drinking enough. (Foolish mistake number two.)

Sunday I didn’t eat. I drank iced tea and Sprite all day. My wife sat next to me on the bed and commented my skin appeared to look yellow. I was still in denial and said it was probably the lighting. I just had a flu or something. I’d be fine.

At this point I start remembering almost nothing, for reasons that will soon become apparent, but that I pause here to mention merely to engage some form of tension in the reader.

Monday morning I felt horrendous. Dizzy, nauseated etc… I asked my wife to take me to the ER. From here on my memory is extremely patchy and my wife has had to fill in some blanks, but I wanted this to be what I remember.

I remember being wheeled into the ER by my wife and lining up at the admissions desk. I remember clutching my Sprite bottle as if my life depended on it. I remember the conversation my wife had with the lady behind the counter, and her looking at me with a look that can only be described as “Dear god he looks like crap!”

I was taken in immediately and put on a bed. My wife was there with our baby. My other two kids were at home with their grandma. I remember having gallons of blood drawn and was hooked up to oxygen and insulin. Ultimately it turned out I had the highest blood sugar level they’d ever seen. It was three figures. (It’s supposed to be single figures.) I also had the highest Bilirubin count they’d ever seen.

My next memory is what I assume was a few hours later, I’m in an ER ward. My other kids and their grandma turn up with Dairy Queen. They all ate sitting on the floor by the bed. I was hungry but not allowed to eat. I remember my family leaving me. My wife and baby had been there for hours and it wasn’t fair on the baby to stay. I seemed to everyone like I was doing a lot better and they were just keeping me to make sure I was stablized. My wife left her cellphone with me so I could call her mom when I was ready to come home. (At this point we had no landline and my cellphone was dead due to lack of apparent need for it.) I said goodbye and figured I’d get to go home the following day. No big deal.

Things started to go downhill quite spectacularly from here.

I started hallucinating; hearing discussions about wrestling! (I am a wrestling fan but even in my messed up state I knew I was quite possibly going mad and that the nurses were obviously NOT discussing wrestling. I even asked one just to make sure who confirmed I was indeed imagining things.)

Next thing I remember is being in a brightly lit room, unable to breathe. I’ve never drowned, or come close to drowning thankfully, but I think on this night I experienced what that must be like. I’m laying on the bed, oxygen being pumped into me at the highest rate they can, and I still can’t breathe. I beg them to give me more oxygen but there’s nothing they can do. I hear discussions about what they should do with me. One voice says keep pumping the oxygen into me. Another says we need to give him a CT scan right now. I don’t know the number, but I do know my SAT, a measurement of the oxygen in your blood, was dangerously low.

The next memory I have is being told I was being given a CT scan, though by this point even at my most lucid I was in a dreamlike state. I knew something was happening, but I felt like I was floating. Nothing was real.

I remember being manhandled into the CT machine and thinking “This looks like a stargate. Cool!”

I blacked out again.

My final memory of this whole night was being asked how to contact my wife. I somehow managed to become coherent enough to explain that I had my wifes cellphone and that they’d need to call my mother-in-law. But I couldn’t remember her cell number so the best I could do was given them her home number. They cut me off mid sentence as things were taking a severe turn for the worse. (As if they weren’t horrendous enough already.) I remember being wheeled into a room and, for reasons unknown, wondering why they were putting me in the children’s ward. (They weren’t. I was in the ICU.) I remember lots of voices around me. I couldn’t see. No idea if my eyes were closed or if they were open and my body had just shut down. I explicitly remember saying “I’m going to die aren’t I”. I also remember hearing a voice saying “We’re losing him”. Though I don’t know if that occurred before or after my utterance. I think before.

I have a very distinct memory, my last memory that night, of seeing an intubation kit being opened. For some reason I was always terrified of them and had got it into my head that if one was ever used on me, I was going to die. I started to freak out. I remember being held down.

There was a white light. Yes, I know it’s a cliche, but there you go. I remember a bright white light dazzling me. Being a videogame junkie my brain decided to make the experience like a game. I was fighting to stay out of the light. I also somehow got it into my head that the nurses and doctors working on me had nefarious purposes and that it was all a scam. Life that is. And that it wasn’t they were trying to save me, it was to stop me finding out the truth. Being the stubborn bastard I am I refused to believe this. For once in my life never taking anything at face value and always having to investigate something paid off. Could very well be why I’m still here.

I’ve no idea how long I was out for after that. I was massively sedated. I have fragments of memory from being unconscious. I had visions, over and over, of a barbed tube being held threateningly over me. I seemed to hear the Lady GaGa song “Telephone” endlessly over and over again. (There was a radio in my room. I now love that song! And I hate Lady GaGa!) I remember arcade machines. (Maybe medical equipment I guess.)

I remember hearing voices. None familiar. Then a familiar voice said my name.

I woke up. I see my wife standing next to the bed, smiling at me. I communicate as best I can but at this point I still have tubes up my nose, IV’s in me, and a giant plastic tube down my throat. I try to smile. No idea if I managed it. My kids are there too. I’ve no idea what’s happened to me. All I know is despite thinking I was, I clearly wasn’t dead. This made me quite happy.

I make the gesture for writing equipment and try to write. It was my only method of communicating. (I still have the sheets of paper.) I asked what body parts I’m missing. Apparently none. The nurses are amazed as they said they had no idea when I’d wake up or have the tube removed.

I remember this really nice male nurse taking care of me that night. I think his name was Kevin. He was awesome. The following day (do bear in mind that my perception of time was screwed up very badly so I’m writing this as how I remember it. The timeframe involved may be vastly different in reality) I had the tube removed. A quite horrid experience unlike anything I’ve felt before, but nowhere near as traumatic as I imagined it’d be.

For reasons that I still can’t quite fathom I couldn’t walk. I had lost the ability! I had to endure physio a day or two after waking up. I hated it. Didn’t want to do it. Despite still suffering from internal bleeding I had to walk.

One other major issue had occurred during all this. My eyesight had basically gone. If your blood sugar goes nuts, one of the things that gets damaged is your vision. I’m very short sighted in the literal sense. Chronic myopia. My eyes had become so bad after all this that it made little difference when I put my glasses on. I was told that they had no idea if the damage was permanent. This was terrifying. Fortunately it did very slowly improve to the point my eyesight is pretty much as it was. Perhaps a little bit worse, but given how it could have been…

Right, so before we go any further, what had actually happened to me?

Okay, here goes. Are you sitting comfortably? Then we’ll begin: The gallstone in February had aggravated my pancreas. A pancreas that was possibly already aggravated due to a high triglyceride level. (It’s unknown whether it contributed, or was a symptom of my pancreas being a grouch.) This triggered acute pancreatitis, which is where your pancreas gets extremely pissy with you and decides to try and kill you. I’ve been told since all this by a surgeon that Pancreatitis is A) possibly the most painful thing a human can have happen, and B) that it’s a brutal debilitating disease that gets almost no press despite being so horrific.

Anyhoo, my pancreas had started bleeding. As a consequence, the day I entered hospital I was suffering from acute renal failure. As the day wore on I started to suffer respiratory failure as well. My liver was also on the blink.

In short, I was a bit poorly.

The hospital stay was the most miserable experience of my life, and I’ve sat through The Horse Whisperer! Most of the nurses were absolute bitches. Sorry, but there’s no other way of putting it. Despite being damn near crippled, they wouldn’t help me use the toilet in my room, nor would they bring med a bedpan, a bottle etc… I was still peeing blood at this point (yes folks, the dark pee wasn’t because of dehydration, but because I was urinating blood). I then got a C-Dif infection which meant a violent case of the runs which, again, they wouldn’t help with. They were absolutely terrible nurses and I loathed each and every one of the bastards. There were only two nice nurses the entire time I was in the ICU, and would quite gladly wish the rest would burn in hell for their despicable treatment of me and, I assume, other patients. Of course given most patients in the ICU are unconscious, it doesn’t matter how poorly you treat them really does it. They won’t know. The nurses in my second hospital stay were infinitely superior in both attitude and ability.

I was eventually transferred off to a regular ward where I roomed with an old guy who was quite clearly senile and who insisted on listening to heavy rock ALL NIGHT LONG! Since waking up from the sedation I had had almost no sleep. Vitals were checked every couple of hours. There were blood draws. X-rays, ultrasound, etc. In short I never got any sleep because I was always being woken up for something. What I DO remember from the ICU is groggily watching The Food Network, a bit of CNN when that volcano was blanketing Europe with dust and an attempt to watch the Formula One Chinese Grand Prix where despite being a great race I fell asleep both during the live broadcast and the repeat.

I was getting thoroughly pissed off by this point. The doctors seemed to be doing nothing. Every day I’d get hooked to various IV drugs and fluids. I remember describing everything at the time as being that they decided to try one thing a day at most, then retired to the balcony for cigars and brandy to discuss things. I felt things were going nowhere. I was in agony from beds which weren’t designed for someone my height and from the very bad bed sore I developed. In retrospect I don’t regret what I did. Yes it wasn’t smart, but there seemed very little point in staying. In fact I asked the doctor several times if there was a reason for me to stay and he never said anything, actually strongly implying I’d be released in a day or two at most. In retrospect this doctor was fairly negligible as I was never told anything and as far as I knew I was getting better.

I discharged myself. I was told I was still very sick. I argued that in fairness they seemed to be doing bugger all to fix anything on me, and I’d do better at home given I lived a mere three minutes from the hospital. The Doctor begrudingly agreed and I was free to go.

Due to my pancreas shutting down I had become diabetic. I was taught how to eat, how to manage it, how to inject insulin etc… I was sent on my way with a bag full of medical supplies and a pocket full of dreams…

I remember as I got into my mother-in-law’s cars thinking “I wonder if I’m making a mistake?” As it turned out I was, but I still have no regrets over doing it.

I had a hellish time sleeping once I was home as every time I closed my eyes the visions of barbed tubes and the other traumatic stuff I remembered came to me. I couldn’t sleep properly. I was a wreck mentally.

Had to go have regular blood tests to see how things were going. Nobody mentioned or seemed to care that I was still bleeding internally at this point. About 10 days out of hospital I had to go and receive a blood transfusion (over the course of all this I wound up with more than 30 whole blood transfusions, as well as various other blood products) due to low hemoglobin. This took six hours, and on the third one I had a bad reaction, started to spike a fever etc… I was told they’d have to do another bag. I said bugger this, I’m going home. My wife and baby had been keeping me company the whole time and it was very unfair on them.

On average you’re supposed to go up 10 points per bag, and with my levels I figured I was back up above 90, so decided to go home. (As it was it turned out I was right.)I had a blood test a couple of weeks later and got a panicked phone call late at night. (This happened a lot in my time at home, the night before we had a similar call due to the result of a CT scan, which was why we’d gone to get the blood work done in the first place.) My liver enzymes had spiked badly. I should get to hospital NOW! This was 11pm. We had nobody to look after the two eldest kids. I said I’d go the following day. I was feeling fairly crappy so had been considering going anyway. During the night I started vomiting. It was dark so I couldn’t tell, but I was vomiting blood at this point.

The next day, Mothers Day, I woke up. Felt very dizzy. Went to the bathroom and nearly passed out. Stumbled back to the bedroom and sat there for at least ten minutes before slowly standing up. I walked out to the stairs. From our stairs I could see the couch and my wife was on the phone. I smiled and waved. I started to feel dizzy again and tried to sit down, but sort of fell. I at least had the good sense to make sure I fell backwards when I collapsed rather than head first down the stairs.

I woke up having trouble breathing and hearing my wife calling 911 on her cellphone as she sat next to me on the floor. She was stroking my head and relaying the details to the operator. Once again we’re at sketchy memory syndrome. I remember the paramedics arriving and asking me loads of questions. I was asked if I could get down the stairs. I said there was no way in hell. (I couldn’t see but again had no idea if my eyes were closed or open.) They call the fire department to get some burly men to come. Said burly men arrived and I was loaded on a board, dragged out of house and stuffed in an ambulance. Something else medical I didn’t fit in. Every ambulance, and I rode in a few, I had to pull my legs up so they could shut the door.

My memory from this point is damn near non-existent. My wife has told me this is a good thing given what was happening to me, so I have no desire to remember any more of this than I already do.

I remember having panic attacks and the only thing that calmed me down was my wife touching me. I remember some extremely traumatic procedures being done to me that involved me being held down etc… So awful I don’t even want to revisit them here.

Then I was shoved in an ICU again. Tests were done. I remember being told that I’d had hemolytic shock. Blood loss basically, due to internal bleeding. My wife disputes this as she was told that I had actually stopped bleeding and it was the congealed blood that was causing the problem.

There was this doctor who I was very tempted to file a complaint against, and I will name him here. Doctor Liu. A shameful excuse for a healthcare practitioner, and a shameful excuse for a compassionate human being. He had been horrible to me before on my previous stay but I don’t remember specifics.

This time he was vile. I’m sitting in bed, tubes up my nose draining the blood from my stomach, in the worst shape of my life and this absolutely evil individual sits there and tells me my kids are going to grow up without a father as I’m going to die. He then spends five minutes sitting there telling me how this was all my own doing, that I was selfish, that I was going to die, and my wife would have to raise three children on her own and they’d have no father to grow up with, and it was all my fault and I should be ashamed. This is what this despicable individual actually said to me, a patient who was at that moment laying in bed dying. I am still considering filing an official complaint, possibly more against this asshole. I hope one day he does this to the wrong person and gets the ever loving shit kicked out of him as it’s no less than he deserves.

After a day or two there I was transferred to a better hospital. (No other way of putting it really.) Surgery was looking likely and I was better off being transferred to another hospital and another doctors care.

The ICU there was a vastly different experience. Nurses who actually seemed to care. Information being given. In fact the only criticism we really had was they got me to sign a consent form without my wife around when I was in no mental or physical state to be considered even remotely responsible for myself. There was also a nurse who kicked my wife out. My wife complained and he got a ton of crap for being in the wrong as he had no reason to kick her out and I had explicitly stated my wife was to be with me at all times when she visited.

I was suffering from kidney and liver failure. The blood had also caused my lungs to partially collapse. I was told that there was several options. The leading one was to go into ultrasound, have a needle shoved in me and drain all the fluid. However for reasons I don’t quite recall they decided to just skip that as time was running out and I was prepped for surgery. Strangely, despite all the many fears I had about hospitals coming true all at once, I wasn’t scared. I was nervous certainly, but had no fear. I was in surgery for six and a half hours. My poor wife was waiting the entire time with ZERO information being passed to her. From everything we’ve learned I almost died twice during surgery. (From my experience and comments I remember hearing, we believe I pretty much DID die in my first hospital excursion and was bought back.) I have no memory of the week after the surgery. No memory at all, but my wife says I seemed perfectly normal mentally. Well as normal I usually am anyway.

My first memory, post surgery, is waking up in bed. I was still heavily medicated at this point and, as I learned over the course of my time in hospital, I had weird reactions to various meds that were supposed to help. One med made me hallucinate a conversation with Abraham Lincoln. With another medication, every time I closed my eyes all I could see was thousands of Howie Mandels. Seriously.

I was hooked up to an IV, and due to the procedure I’d had (pancreas and gall bladder removed, with the Islet cells from my pancreas transplanted back into me) I had 8 tubes coming out of my stomach. Some pumping fluid into the surgery area, and others draining it. This was supposed to help the area. Ultimately it led to a massive infection that led to me having a second surgery a couple of weeks or so later. Yay! *sigh*

Despite being REALLY messed up I had somehow got to the end of the bed and was sitting up. The nurses have no idea how I managed this and nor do I. I realised something was wrong, but my brain decided I was in a parallel universe and that the only way I could fix things and get home again was to get the hell out of there back to my wife. So I started to try and rip the tubes and IV out. (I only succeeded in ripping my IV out thankfully.) I was seriously on the verge of insanity at this point due to the medication and the sheer trauma of everything that had happened. Ultimately what saved me was I managed to come back to reality enough to call my wife. We’d paid for a phone in my room and my wife had hurriedly arranged for a landline to be installed at our house so we could talk without being gouged by the thieves at Virgin Mobile. I called and she was able to sort my head out and confirm I WAS in this reality. I was just very very ill and had to stay in hospital for now.

I did have a LOT of weird experiences. I started to suffer breathing issues again, but this time all caused by my mental state. I also, every night without fail, felt something strange was going on. In drug induced dreams I’d be home with my family, but every time I woke of course I was back in hospital, but my brain couldn’t distinguish between the dream and reality and I was becoming confused and distraught. In fact in one dream/reality trip I became convinced the hospital had moved and my room had been left behind. In another there was a terrorist attack that caused everyone but me to be evacuated from the building. (28 Days Later has a lot to answer for…)

The recurring theme of all this, and in most dreams I’ve had since I got home in July, are loneliness and abandonment. Gee, I wonder why…

Anyway, I was in hospital for two months when I was told it’d be two weeks. I got the second infection requiring another surgery. Then I started crapping blood. Literally. Terrified I was going to die I was scheduled for a colonoscopy. All sorts of dark diagnosis’ were postulated. I was told off the record, by the colonoscopy guy, that what had happened was during the second surgery my stomach had been beaten around and bruised, and the blood coming out of me was entirely the surgeons fault for injuring my stomach. A surgeon who later came in and yelled at me for wanting to go home. Note: I was not planning to discharge myself or anything like that. I was just very very sad that I was still stuck there, and this idiot came in and spent a few minutes yelling at me about how sick I was and that I wasn’t going home. My wife was there too. I remember looking at her saying “What the hell was all that about?”

In the course of my two month stay I had multiple CT scans, which are very very bad for you due to the radiation levels and most of them were just the doctor being paranoid. I had multiple infections including Vancomycin Resistant Enterococcus. VRE. It’s kinda like MRSA’s slightly less terrifying cousin. Only it got in through the t-tube, the tube that was running from my liver to a bag hanging outside of me.

The one thing you never want to hear during a medical procedure is “Oh no… Oh god no…” I was undergoing one procedure and it involved injecting something into my bile duct. To do this the t-tube bag had to be removed, and this idiot intern had broken it. By this point I was so cynical about my stay that instead of panicking I almost started laughing. It was that or go insane. From then on I started modifying the consent forms to explicitly forbid any interns or students coming anywhere near me to do anything other than watch.

I believe the infection got in via that incident. It caused my liver to go nuts and I was put on an antibiotic that it’s own manufacturer says you should only be on for 25 days maximum. I was on it for almost twice that. (Most of which was after I left hospital.)

I had various other horrific experiences, most of which I don’t want to recount.

I was told I was going home on several occasions. By far the worst was when I was told at 6am I was going home that day. Then at 7am my surgeon came to see me and after telling me repeatedly I’d be going home in a few days, told me I wasn’t.

I came very close to suicide that day. Or at least would have had I not invested so much effort in AVOIDING death the past three months or so. I wound up with the psychiatric department visiting regularly. I filed complaints against several nurses who treated me like shit and much to my delight, the complaints were listened to! (Including one against a physio who thought it was acceptable to make me walk when I had another case of the runs while being “cleared out” for the colonoscopy and that he’d wheel a commode behind me. That was deemed completely out of order and he ultimately apologized to me for it.)

Incidentally, regarding colonoscopy, if you’re ever told to drink a product called “Go Lightly”. A) you won’t, and B) it’s propylene glycol, which is very dangerous to the liver. The fact I was given tons of this stuff to drink when my liver was still very dodgy is reprehensible.

Then the day came. I had really had enough by this point. Instead of trying to maintain my cheery demeanour I was thoroughly pissed off and sick of being bossed around, humiliated, degraded and generally treated like crap. (I was told by the nice lady from the psychiatric department that you’re better off in prison than hospital as you have more freedom and control in prison.) I remember that morning I had spent hours on the phone talking to my wife. My nurse that day was, like all of them did, harassing me to get up and walk.

The logic is if you lay around in hospital, that’s what you’re going to do at home, which is of course utter bollocks if you don’t live alone and I told them as much. At home I kinda HAVE to get up and move around to use the bathroom, go to bed etc… But of course they’d drag me out, even two days after the second surgery while hopped up on Morphine, to go for a walk. They made me use a walker. This seemed bloody pointless to me as being so tall I had to bend down and walk strangely. Plus in the real world I DON’T USE A FUCKING WALKER! I had many, MANY arguments with them. They also had this inane thing that I had to get out of bed and sit in a chair for at least an hour aday. I tried. It killed my back. I already have severe back problems, AS WAS NOTED ON MY BLOODY RECORDS! So I started refusing to sit. I’d sit up in bed, but I’d be damned if I was going to be a performing monkey for these people. The sitting was explained that it helped open up my lungs. Well my lung capacity was clearly doing okay as I had this machine to use to measure it and I saw noticeable improvements.

So back to the day, I was on the phone with my wife and the nurse was bugging me to go for a walk and had been since about 8am. It was around 11am at this point. I finally lost it and screamed at her “NO! I AM TALKING TO MY WIFE!” I finally reached breaking point and while I’d been stubborn up to that point, I was becoming down right hostile as I was sick to death of these people. Sick to death of being there. By this point I’d had several “day passes” where I went home for the day, then went back to the hospital. This made things worse more than anything as it basically gave me a taste of what I’d been missing and then snatched it away.

I’ve no idea if this contributed to things, but once again that morning after being teased I was going home I was told there was something up and I had to stay. I am not ashamed to admit that I cried. I could take no more. I apparently had a cyst inside me that was full of fluid. My surgeon was apparently concerned that it was VRE infected and wanted me tested.

The one shining light (even though she scared the hell out of me at first) was the charge nurse. The lady in charge of the ward. I will call her A. A almost never saw me, but if I asked to speak to her would always see me, and more importantly listen to me, which is more than most of them did. On this day she had already come in to see me and explain why the nurses were being so pushy with me. In short everything that could go wrong for me there HAD gone wrong, and there was a real concern I’d develop a blood clot from not walking. (I was refusing the injections to prevent this at that point as they hurt far more than anything else did.) In fact I learned later that in my medical records I had been referred to as “this unfortunate man” by one doctor which to this day makes me chuckle.

So around 1pm A comes in to see me again. I was talking to my wife again and said goodbye to listen to A. She explains that she knows how hard it’s been and everything I’ve gone through. She’d already had a fight with my surgeon for telling me I’d be going home then changing his mind a few weeks prior, saying that it was very unfair to do that to me, especially after everything I’d been through. This day she’d had another fight with him over the cyst. She asked if he was just being over cautious about me and he admitted that yes, he was. She checked my blood test results (I dread to think how many gallons they took from me over those few months) and my numbers were good. Everything was okay. I had a feeling I knew where this chat might be going but after so many disappointments I didn’t dare to hope. Then she said it.

“You can go home.”

I couldn’t believe it. I had to say “Seriously?” a few times before I realised she wasn’t kidding. I laid there in bed just crying tears of joy. I did my best to calm down and called my wife. She was the other one who had suffered through all the times I was told I’d be going home only for it to be snatched back. I’d already spent hours talking to her and we were both very upset there seemed to be no end in sight. I called.

“Are you sitting down?”

“Yes. Why?” There was a palpable sense of dread in her voice as usually my phone calls after speaking to one of the nurses or doctors had bad news.

“I’ve been discharged. I can come home!”

Rather like I had with A my wife checked a few times that I was serious. I think she cried too. She had some phone calls to make. The hospital is a half hour drive away. We had no car. We had already spent over six hundred dollars on car rentals to make her life easier coming to see me and more importantly so I could actually go home on my day passes. Most visits had been via the bus. It took her two hours to get there and two hours home due to the idiot routing of the buses. Plus she had the baby with her who would invariably scream all the time coming home from seeing me, maybe because he was missing me.

Phone calls were made and we managed to get a trip home covered financially. A cab would cost near $40. My wife and kids came to the hospital to pick me up. The problem was my surgeon was busy carving some other poor bastard up and couldn’t deal with the prescription authorization I needed to get the pills I was on to take home. (An enzyme tablet to compensate for the lack of pancreas. A pill which I have to take EVERY TIME I want to eat. Dear god it’s tedious. And they taste like crap too. And about a billion antibiotics.) We waited for an hour or so and I started harassing my nurse. She said there was no idea how long the surgery would take. Could be 10 minutes. Could be 10 hours. So there I was, discharged, ready to go home, and unable to do so.

After about three hours, with my kids starting to get very antsy, my nurse, the same nurse I had yelled at, decided enough was enough and got it all sorted for us. Completely violated hospital policy if I remember rightly, just so I could go home. I got dressed. My wife got a wheelchair. (I could still barely walk at this point.) We grabbed all my stuff and wheeled me out for the last time. I said my goodbyes to the nurses on duty, thanked them for everything, though after so many disappointments was still convinced that any second my freedom was going to be snatched away again. I didn’t truly believe I was going home until the cab pulled out with me in it and we started heading home.

That was almost 6 months ago. A week after getting out I started draining a ton of fluid out of my incision (which was still not healed. Deliberately I should add, so it healed from the inside out to avoid an abcess). It looked and smelled just like the fluid that had been drained out of the tubes that were placed in me. (Having one of those tubes removed was the single most painful thing I experienced in my entire time in hospital.) I called the ward I’d been on.

They weren’t surprised as the fluid left had to go somewhere. Several other nurses were consulted and while it was gross, it was no cause for alarm.

Except for my surgeon whose assistant told me he wanted me readmitted right away. Having only just got out I said there was not a snowballs chance in hell that was happening, especially after several nurses had said it was okay. She bitched at me and said “Well who you are going to listen to? The nurses, or your consulting physician.” “The nurses.” My reasoning being they saw the wound, and me, day in and day out, seven days a week, whereas this “consulting physician” was the one who had duped me into believing I was going home so many times, whose sloppy work led to the infection that caused my second surgery (though he did actually apologize for it. Scant comfort from that but still)… and who only ever appeared for about 30 seconds every few days to tell me what latest trauma I was going to have to endure or say something entirely cryptic.

In short I was justified in ignoring his wishes. I DID wind up with a fairly awful infection, and was put on more antibiotics, but I NEVER went back as anything other than an outpatient. Did have a minor procedure where a surgeon took scissors to the wound and opened it up a bit more so they could pack gauze in it, but that was done on a schedule outpatient appointment with Infectious Diseases who BY FAR were the coolest people in that hospital. I loved it when they visited me during my stay as they were fascinating people, in a fascinating field, and ultimately were the people who sorted out all the infections I wound up with. Fantastic people!

My wound was ALMOST healed at the end of October. There was still a little discharge but it was mostly healed, despite having been cut open again etc… Then at the end of October I had to have an ERCP procedure. This is shoving a camera down your throat, through your stomach and down to your liver. They removed the existing tube in there, discovered that the bile duct (which the blood all those months ago had compressed and damaged) was still not recovered and another tube was inserted.

The problem was they laid me on my stomach for the procedure. I figured this would be okay. In fact I was pleased as it was the first time I’d laid on my stomach since I got sick and it felt like major progress. Turns out this is completely non-standard for the procedure. The patient should lay on their side.

Sadly the following day when my wife changed my dressing (which she has done every day since I have been home) she noticed that the wound had torn open considerably.

It’s now mid December and it’s STILL not healed. I am eating tons of protein, taking vitamins etc… It’s healing slowly but is still draining. Mostly blood. (Which way back in hospital I was told is a good thing as it means fresh blood is getting to everything.) I’ve seen my GP and had the wound swabbed. No news is good news in that regard. I also got prescribed a cream called Silver Sulphadiazine which is antibiotic and, more importantly, stimulates skin growth. Seems to be working well.

Some other grim highlights:

Vomiting blood. Having a tube shoved up my nose and down my throat to drain my stomach and the nurses being amazed at the sheer quantity of blood I had in there. Though if you ever want to see something funny when in hospital, act like you’re going to start puking and watch them back off in horror! High-larious! Though one nurse didn’t flinch during one event and comforted me, and I remember her saying “Oh look! There’s those pills you took!” Funny.

And I am still pissed my streak of 16 years without vomiting ended. Now, sadly, in an eight month period this year I puked more times than I had in the previous 38 years of my life combined!

I remember laying outside in a waiting area for some horrid procedure, seeing a bed wheeled out covered in monitors and drips and seeing them all hooked to a child no older than my youngest. That was utterly heartbreaking, and a big reason I’ve been trying to donate to the Childs Play charity.

Losing 150 pounds, and being unable to eat due to multiple “nil by mouth” events in hospital wrecking my appetite, and my stomach being wrecked by antibiotics. It’s no exaggeration to say I almost starved to death and ultimately being overweight is what saved me. The obesity paradox once again. Even medical professionals have said to me that had I not been overweight, I’d have probably died from starvation as I simply wouldn’t have had the fat reserves to survive. As it was I became basically skeletal. I’ve put on 35 or so pounds from there now, back up to 200 now from 165. I am still about 50 pounds below a supposed “healthy” weight. When I saw my GP back in October I was above the ridiculous weight I was told by a dietician was my base “healthy weight”. (Which is based on the KNOWN to be flawed BMI, which already don’t work above 6’2″ or thereabouts, and I’m 6’8″) My GP took one look at me, laughed when I told him that and he said I looked much better when I was overweight.

I’ve also been left with chronic memory problems. For whatever reason, be it drugs, trauma or brain damage from the respiratory failure or toxins in my blood, my short term memory is shot to hell now. Seriously I can think of something at the top of the stairs and by the time I’m at the bottom, it’s gone. This is the norm now sadly. Even my mother-in-law commented over Christmas to my wife about how bad my memory is now. My wife will ask me to do something, and I say yes, then immediately forget. It’s horrible, but I have to live with it. Better that than long term being damaged is the way I look at it.

Nice highlights:

Having a long discussion about the works of Joss Whedon with one nurse.

Having a long discussion about the merits of Depeche Mode with another.

Being told the nurses liked coming into my room as I was always playing music.

Being told I had good taste in music.

Meeting an absolutely inspiring lung transplant patient and his wife. Due to the memory issues I can’t remember his name, but dude, I hope you’re doing as awesomely well as you were when I last saw you!

So what am I left with after all this ordeal?

11 circular scars from various tubes shoved in me, and of course one giant incision that looks like my stomach is frowning at me when I look in a mirror. The holes are fading nicely.

The world’s worst crash diet. I wanted to lose weight but this was ridiculous.

A new appreciation for what it’s like to have working organs.

Especially the lungs.

Massive hair loss. (Seriously. It started falling out in hospital way worse than it ever had before!)

Having to deal with nurses coming to my home every week to check my wound and acting like I’m deliberately not healing just to annoy them.

Of course the near death experience and everything else has given me a new perspective on life, and while I can’t claim it’s made me determined to climb Mount Everest or any such other nonsense, it has made me appreciate the little things more. I am especially grateful I’m still here for my kids.

When I came home I was unable to walk properly without a cane. Getting up and down stairs was a nightmare. The first time I was able to walk up the three stairs from our dining room to our living room felt like I HAD climbed Everest it was such an achievement. Being able to make my own cup of tea. Being able to make my own food. Being able to get up without aid. All minor achievements to most people that have meant the world to me this year.

I’m still not 100%. My muscle mass is shot to hell. I have no strength. My stamina is also at low levels, though is improving. My first trip to the mall (about a kilometre round trip) I had to sit at every seat and was exhausted when I got home. Now I can get there, wander around, do shopping, lug it all home, and only have to sit once or twice to catch my breath. Yesterday was the first time I’ve done the entire trip and not sat down at all!

It’s little things like that which highlight to me that while I may still have a slightly open wound, and still have to go and have another tube shoved down my throat next year to check on my liver, the fact is I AM doing much better and I can see things improveing every day. Simply rolling over in bed used to require Herculean effort. Now it’s no big thing. On Christmas Day, I ran up the small stairs in my house. BLOODY RAN!!!!

If you take nothing from this, if you have the means, please give to the Childs Play charity. Having seen what the kids in hospital go through, anything which can provide them with some sort of distraction is wonderful. I’ve already given a little this year (with the AI War expansion that Arcen gave all proceeds from to Childs Play. See, video games, it’s on topic now! HAHA!)) I plan to give more. It was bad enough for me. To think of a kid going through what I did… One of MY Kids for example… Anything I can do to make their time there more bearable, I will do.

Finally, I just want to publically say a huge THANK YOU to my wife. We’ve had our problems in recent years. Nothing like one of us almost dying to put things in perspective! She has been downright incredible. Visiting as often as she could when I was in hospital despite the many issues she had to cope with, not least dealing with 3 kids on her own a lot of the time. Dealing with my dressing every day. Sorting out transportation for the many visits to the infectious diseases department I had to go to regularly. Keeping me sane during the sheer boredom of blood transfusions… She has been an absolute hero to me and I want to say THANK YOU.

Now if you’ve read all this, hopefully you’re taking something away from it, even if it’s a new found understanding of a horrific and almost untalked about disease. Awareness is almost nil, despite Pancreatitis being one of the most painful and debilitating illnesses that can befall you. I was told it’d probably take six months from discharge for me to recover properly, and it appears that schedule was absolutely correct.

At the very least I hope this New Years you will raise a toast to your family and appreciate them a little more than usual, and give mine a thought after the year we’ve had. My kids are only really opening up now and talking about everything. My nine year old took things especially hard.

So Happy New Year my friends. I will return to my erratic blogging schedule next year. Lots to write about. Being out of gaming for so long was hard. I was out from March to July due to the illness and hospital stays. Then aside from brief periods I didn’t really get into gaming again properly until at least September. I have games I bought shortly before I got sick that I’ve barely touched. I’ve got lots to write about, and plan too.

Now go hug your family, tell them you love them, and come back and read my blog regularly, and if you’re a professional, hire me please. I deserve it after this nonsense!:)

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8 Responses to “Where the hell have I been?”

  1. IQXS Says:

    What an incredible story of the human will and your capacity to endure.

    We here remember clearly the touch and go over and over as we were given updates…and we remember the heartache and frustration.

    But look at you now. Piss and Vinegar and getting stronger and stronger! God bless you, you Jaded Malcontent…we love you HUGELY and thank the Divine that you are a fighter and have stayed in this crazy VR for another round of the Greatest Game Around! A million Zillion Life Points for making it through!

    Our best to your precious wife and to the kids. Happy HAPPY New Year, Mate…now, make it so Number One!

    SHINE ON in 2011!
    Respect!
    Team IQXS

  2. SarahBee Says:

    Such an amazing story. I watched it unfold slowly over the
    months through the updates of your wife and my heart stood still at
    the times she said you’d be coming home, even if only on a day
    pass. She is a fantastic person who never gave up even in her very
    understandable fear and ravenously researched every aspect of every
    procedure, infection, medicine, and treatment. I’m in awe of your
    family and pleased doesn’t begin to describe how happy I am that
    you are home with them and healing. What an adventure!

  3. Yochannah Says:

    It’s nice to hear the whole thing set out in order, and
    incredibly hard to imagine going through it all 😦 and I have to
    say I’m glad you have hung on and recuperating. My favourite
    corners of the internet wouldn’t be the same otherwise…

  4. AndyCarolan Says:

    Steve, that is such a moving account of your experience. Obviously, it goes without saying that you are one fortunate dude for making it back, but it sounds like that its partly due to your positive outlook.

    Glad you’re still with us. Best wishes to yourself and your family for increased health and happiness in 2011!

    Andy

  5. Graham Says:

    What an incredible scary journey. Both heart breaking and heart warming, some good values within it too. Lets hope that 2011 brings a very happy, healthy and peaceful new year to you both.

  6. Jukka K Says:

    Ride on, mate! Glad you made it.

  7. okiewife Says:

    I read your whole story and admire your courage and that of your wife and family. What an ordeal you have been through. Peace and blessings to you all.


  8. […] 3, 2011 This is a hard post to write, as I was spectacularly out of commission for a lot of 2010. Last game I really played before I got sick was the epic Just Cause 2. The first […]


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