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It's been a while, huh?

Razor

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In September of last year, things in my memory get hazy quickly.  Bits and pieces have come back to me over time that I now know to be accurate, but I still have to recreate what happened based on how my memory fits in with explanations from friends and family, text messages and emails, and my hospital records.

 

Since I was nineteen, I’ve been somewhat of a heavy drinker on and off.  God knows what all the drugs I did in my younger days did to me.  There were multiple times as a teen when I probably overdosed and just by sheer luck and the stamina of youth happened to pull through without any real incident.  Repercussions never happened, I never paid for anything in a real way, so I never really worried about it.

 

At some point, though, I thought to myself that I better leave drugs alone.  They’re expensive, they lead to other crime and dangerous situations, and I enjoyed my lifestyle too much to jeopardize it by getting in trouble legally.  So in the interest of self-medicating, I turned to alcohol thinking that it’s relatively safe, relatively inexpensive, easy to obtain, and most important of all completely legal.  The problem with this is that I never do anything in a normal fashion.  No, I take it from a nice leisurely stroll to straight running a goddamn marathon overnight.

 

Without putting in too much work on details here, eventually I got myself into a really bad situation.  I’d just broken up with my boyfriend of four and a half years, the longest relationship I’ve ever had.  This is the same man to whom I considered proposing.  After the breakup we attempted multiple times to remain amicable, but subconsciously I blamed him for everything.  In my mind, he didn’t work hard enough, he didn’t pay me enough attention, he didn’t keep a steady job, he used up the money I worked hard to earn, he no longer surprised me, and ultimately these seemingly small failings amounted to a mountain I just wasn’t willing to climb anymore.  We even lived together after the breakup, until I basically kicked him out of the apartment.

 

At the time I was working for a company which made me feel like I was Satan incarnate.  It was finance, loans to be specific.  High-risk, high-reward, predatory lending.  And I was pretty okay at it, I just didn’t have the bottomless darkness in my chest where my heart should be to continue doing it.  Still, we all have to make money one way or another, eh?  Here I was, pretending to be a professional adult, pulling down ridiculous sums of money, but I was incredibly unhappy.  To make myself forget the stress and the guilt, I started drinking more.  And more.  And more.  A fifth and a half of good whiskey a night will let you sleep, no matter how much your conscience may protest.  Time passed slowly, and I drank myself into a state of unconcern.  My boss threatens to fire me for things that aren’t my fault?  Drink about it.  I’m having trouble finding friends in a new city?  Drink about it.  Feel like I’m wasting my life and potential at a job that makes me feel like a horrible person?  Drink about it.  Didn’t really matter what it was - drink about it.

 

I eventually quit in the manner I usually do when I’m sick of a job.  One day I’d had enough.  Sure I’d just bought a new car, signed a new lease, moved to a new town, started a whole new life, but damned if I could take it one more day.  My boss asked me specifically to lie about a figure that was owed on a lawsuit we were filing and I believe my words were “I’m not going to jail for you cock waffles, fuck you, I’m out.”  Or something to that effect, but it was quite clear I wasn’t stepping out for lunch and I wouldn’t be showing up the next day.

 

That, however, did not make things better in and of itself.  Now I was broke.  I was living far beyond my means.  I had no doubt I could find a job immediately, but at the same income?  Doubtful.  There’s just not an opportunity like that around where I was living.  But hey, a week later I had an interview and had a job back in cushy old customer service land, where they pay you decent money to talk to stupid people.  Habits die hard, though, and now the concern was money.  And what do you do when you’re worried about money?  Drink about it.

 

About a year and a half ago, I noticed I wasn’t always feeling great.  I was tired more easily, had more bouts of abdominal pain, and vomited for the first time in many, many years.  I thought nothing of it at first, but it became annoying enough to go to a doctor.  Thus began a terrifying series of misdiagnoses which I still can’t believe happened and would probably sue over if I still had the energy to pursue such things.

 

I got shaky and weak, the vomiting wouldn’t stop, and nothing helped.  I was diagnosed with everything from diverticulitis to a UTI, none of which were accurate.  That didn’t stop them throwing drugs at it, though.  I went through CT scan after CT scan, with IV Contrast each time, and each time they missed it.  I took rounds of antibiotics, downed pain pills and anti-emetics, but nope.  I thought to myself that maybe it was just in my head, that stress was causing this.

 

Then I turned yellow.  I mean full on hi-liter neon fucking you-could-see-me-glowing-from-space canary.  I looked in the mirror one morning and saw it and thought “Well, fuck me, pretty sure my liver is pissed off at me.”  I went to the hospital and got the reaction I expected, which was basically “Um, do you know that you’re really yellow?”

 

They’d previously run a liver panel and everything was fine.  Only now it wasn’t.  Enzymes had skyrocketed, and it wasn’t just my liver.  My kidneys freaked out, too.  The repeated IV Contrast, rounds of antibiotics, and the liver failure kicked their ass and I was losing kidney function.  There was a lot of medical jargon, but it all amounted to this: You’re dying, there’s nothing we can do, you may want to call your family and friends to say goodbye, and we’re here if you want to discuss palliative sedation and hospice care.

 

I made a decision at that point.  I wouldn’t call my family or friends.  They didn’t need to be involved because of my poor decision making process.  I had health and life insurance, and that would be enough to cover my care and cover any final expenses, which I assumed I would be able to get in line before I was no longer able to function.  I didn’t realize how quickly I would deteriorate.  I went home and by this time it was difficult to walk.  I had swelling in my extremities that was quite painful, severe abdominal pain, and I was mildly depressed.  I actually wasn’t terribly sad.  I mean I’ve lived a pretty full life for my age.  I’ve kissed (and done more than that) plenty of pretty boys, made mad money, lived large, had wonderful friends, and I’d long ago gotten over most of the major challenges in my life.  I felt sort of ready, like this wasn’t the end really, just another thing that just happens that you roll with and see what happens.

 

Pretty soon the pain got too bad for just Oxycontin to handle.  I was back in the hospital on massive amounts of Dilaudid and Ativan.  Palliative sedation.  It quickly went from relief, to being pretty high, to being mostly unconscious because with consciousness came serious pain.  When I say pain, I don’t mean I-stubbed-my-toe-oh-gawd pain.  Take the worst pain in your life, the worst thing you’ve ever felt, multiply that by a thousand, and that’s pain.  No one tells you that dying hurts.  I think they don’t want to scare you, but that’s a truth for which everyone should be prepared.  Dying is not comfortable.

 

After a day or two, things went black.  I thought I was dead.  I don’t know how I thought I was dead, but I did.  You’d think the act of thinking proves you to be alive, but things get really weird in your head when there’s that much ammonia in your body, when your brain is swelling that badly.  Gradually, this notion faded and I started to dream.

 

I dreamed I was injured and in pain, hardly able to move.  I was outside and there was no one around, just empty streets.  Somehow I knew I had no home to go to, no one to help me, and I knew I had to either get myself safe and better, or I simply wouldn’t get better.  I found a house, and it was so hard to get into the house.  It wasn’t locked or anything, but getting up the steps, into the door, and looking around inside was enough to drive the breath from me and leave me crawling.  There was a mattress on the floor of one of the rooms and it was all I could do to get onto it before I passed out again.  I slipped in and out of consciousness in the dream (likely mirroring what was actually happening to me at the time).

 

Eventually I knew if I didn’t eat or drink I would die, and getting this far would count for nothing.  I couldn’t move, though.  I was spent.  I could no longer lift my arms, my legs didn’t respond, really the only things I could still move were my eyes.  A girl eventually showed up.  She wasn’t remarkable in any way, really, except the look of concern on her face as she looked at me.  I later found it strange that at this point I didn’t think to ask for help, or suspect she would try to help me at all.  I assumed that nature would take its course and I’d eventually die, which would stop the pain, so I welcomed that idea.  She had other plans, though.

 

It doesn’t really matter, but she explained to me that I was sick and that I was safe there, that no one would hurt me.  She brought me food and water when she could get me to eat or drink it.  She didn’t exactly stay by my side, but somehow it seemed like she had my best interests in mind.  Obviously, this is a fever dream inspired by an actual nurse, most likely, but it was quite a profound realization in my addled state that I wanted to die, that I was tired, that I’d finally realized I’d gone too far and wouldn’t get better and that this was simply the end.

 

The blackness takes over again for a while from there.  I’d gone to a hospital locally, expecting to die there.  No one other than my roommate even had a clue how bad I was, and she didn’t know how to contact my family or anything like that, so I thought I’d just slip away quietly and everyone would move on with life.  I really should’ve known better, or at least planned better.  Another thing nobody tells you about dying is that people who love you will not let you die if they have any possible fucking way to keep you from doing it.

 

I woke up in mid-October.  I was so sick.  As I regained consciousness, I became aware that they were giving me different medicines, medicines I hadn’t heard of and I was too out of it to even ask what it was, what it was for, or even really talk or notice who was there.  I noticed that I’d lost a lot of weight.  My abdomen was distended but my arms and legs were much thinner, and I felt constantly cold.

 

At first they didn’t ask me questions, they didn’t do anything but administer meds and watch me closely with a sad look to them as if to say what a shame, such a waste.  They made me drink lactulose, which is torture in itself.  Ammonia builds up during liver failure, and lactulose helps get rid of it.  I’m not going to explain how it works, because I don’t even like to think about it.  Google it if you want the nightmares.  I was too far gone to protest anything they did.  At one point they had to set up a line directly into an artery for some reason, which I’m told is usually quite painful.  I didn’t move, I couldn’t feel it, I couldn’t really feel anything past the general sensation of just PAIN EVERYWHERE.

 

Eventually, I regained some lucidity.  They asked me where I was and I replied that I was obviously in a hospital.  They asked which one, and I realized I had no idea.  Then I realized my mom was there, and it looked like she’d been crying.  I remember wondering how she got there, but I didn’t think to ask.  Apparently, I was quite close to death while I was at the first hospital.  Somehow my roommate got in touch with my mom, and she came to the rescue.  After she found out what happened, she had me transferred to Oschner in New Orleans, which is a major transplant facility.  When I arrived, doctors made no promises, but encouraged her to call the family together and to say what they needed to say while they still could.

 

When in liver failure, doctors assign a MELD (model for end-stage liver disease) score to their patients.  It’s used to come up with your prognosis based on lab values.  It ranges six to forty and the higher it is, the higher your chance of dying within three months.  My score was thirty-five.  Basically already dead.

 

I knew people were sad, but it was still hard to hold on to reality.  I could tell I was hallucinating, that I was seeing things that weren’t actually there.  It’s hard to explain, but I’ve always been able to tell if something is a hallucination versus reality, so this didn’t scare me much and I was able to make some general sense of the situation.  A doctor came in and explained what happened.  They’d been working on clearing the toxins out of my body enough to stabilize me and get me well enough for surgery.  Surgery?  Yeah, major surgery.  I asked what they meant, and they said that I needed an immediate liver transplant to live.

 

As best they could, they got consent from me.  Consent for the surgery and for substance abuse counseling afterward, as well as assurance that I would remain compliant with medications and follow-up visits and labs and all that other great stuff.  I thought okay, well, maybe I get another shot.  Maybe it isn’t really time.  I’ll spend a couple weeks getting better and go back to normal life.

 

On a side note, no one tells you that if you don’t have money and you need a transplant, you’re simply going to die.  I was told very bluntly that if my insurance refused to cover it for any reason, they would not proceed with the transplant.  Luckily, I have amazing insurance and I work for an incredible company which paid for my insurance the entire year I was out of work.

 

At one point, the nurses and doctors came in excited.  There was a liver, they said.  It was for me, they’d found one that matched and it was time.  Not long after, they came back, this time not excited.  The liver was no good, they said.  They’d thought it was, but when the surgeon examined it, the vessels were hardened, they couldn’t be sewn to mine.  It was a bust.

 

A few hours later, though, a miracle (at least according to my mom, I think it was just coincidence) happened.  They had another liver, another one that matched me, another one without hardened vessels, one that was perfect for transplant.  And everything went dark again.

 

The next time I woke up, there were over a hundred staples in my stomach.  The scar reaches from just under my rib cage on the left front side to halfway around my abdomen on the right side in a chevron shape.  It’s truly massive, I was cut in half.  I wasn’t prepared to see that, and I started to immediately regret my decision to go forward with the transplant.  Then the pain hit me like a truck.  The next few days are a constant cycle of drugs, sleep, pain, drugs, sleep, pain, drugs, sleep, pain.  When I cleared up a little after they stopped IV pain meds, they fed me more Oxycontin like it was Skittles.  My mind was slowly clearing, and there was talk of how to care for the wound, what recovery would be like, what meds I needed to take, and all kinds of other information.  I had the sinking feeling that it wouldn’t be so easy.  My legs had atrophied and I couldn’t stand, walk, sit upright, or really get comfortable in any way.

 

To this day I cannot sleep on my side or stomach.  It just hurts too much.  I received my transplant October 19th, 2017.

 

The recovery was the most grueling, horrible, unimaginable thing to ever happen in my life.  At first the pain was overwhelming, but it was brought under control with powerful opiates.  I struggled to move.  When I stood, the tendons in the back of my knees had tightened and it was impossible to keep my balance at first.  I went most places in a wheelchair.  I thought this would pass quickly, but it didn’t.  I was in that chair for what seems like most of a year.

 

The wound began to heal, but things were messy.  Another side effect of liver failure, and of surgery, is the draining.  Something to do with albumin and cells not keeping liquid inside them like they should and it needs to find some way out.  Everywhere on me leaked.  I had places in my skin that spontaneously developed what, for lack of a better explanation, seemed like a sourceless but continuous leak.  It was like liquid (not sweat, but steadily dripping) was coming out of my pores.  It came out of the wound, it came out of other places where I had stitches for other reasons, it wouldn’t stop.

 

Then the complications began.  Most people who have a transplant take Prograf, or tacrolimus, which is an anti-rejection drug.  They started me on it a while after the surgery as maintenance for the transplant, as per protocol.  Little did they know, it caused severe neurological side effects in me.  One day I was sitting with my mom and a nurse, and I was pretty lucid.  Still on a lot of drugs, but now I was telling people my correct name at least, and knew how old I was and what year it was again.  Somehow, I knew I was going to have a seizure.  I could feel it, and if you’ve never had one then I just can’t explain how I knew.  I tried to warn them.  “I think I’m having a ssss-sss-ss-s-sssssss-ss-s…” and then everything goes black.  As soon as the S sound escaped my lips I got stuck, kept stuttering the same consonant over and over, and then seized.  What seemed like a brief nap later I came to again and they were staring at me wide-eyed.  I asked what happened and they told me I had a seizure.  Then I promptly had another one.

 

They put me on Kepra to stop the seizures and switched me to cyclosporine for anti-rejection.  This caused me to essentially speak gibberish, nonsensical answers to questions, not knowing where I was or how to act appropriately to the situation.  At one point I got so frustrated I started crying.  I kept trying to tell them I had to go to the bathroom, all I needed was just some help getting up so I could hobble to the toilet to go pee.  I kept trying and trying to tell them, I could hear what I wanted to say in my head, but it kept coming out wrong.  I couldn’t make the correct words strung together to express what I needed.  I cried until more nurses came and they figured out by process of elimination what I needed, and helped me to the bathroom.  I was taken off the cyclosporine.

 

Then it was a lot of steroids to keep me from rejecting the liver.  During this time, the wound began to heal wrong.  It healed from the outside in, instead of inside out.  So they took out all of the staples.  All. One. Hundred. Seventeen. Staples.  They packed the wound with foam padding, applied a wound vac, and I spent months healing slowly as scar tissue filled in the hole.  As if this weren’t bad enough, my kidneys weren’t functioning, I got massive infections, and I vomited constantly every time I ate or drank.  This didn’t phase the doctors much, though.

 

Dialysis for the better part of a year, with a perma-cath installed in my chest.  Countless rounds of antibiotics to control infections.  Anti-emetics didn’t work, tube feeding didn’t work (I still vomited up what they put down the tube).  They installed a central line and fed me intravenously for several weeks.  There were loads of painful tests, including the time they inserted a needle into my hip to sample bone marrow and the time they thought my knee was septic so they had to ram what looked like a drinking straw sized needle under my kneecap.  There was the time they gave me a shot of something to make my blood counts normalize and it caused back spasms so bad that four doses of Fentanyl later I was still crying and they were administering yet another dose and kept Narcan on hand in my room just in case.  Gradually, over the course of many months, I started slowly improving.  It’s to be expected, they said.  You almost died.  It was really a miracle that you even lived long enough to get the transplant.  You should, by all rights, be dead right now.

 

Time fades the memory, because you don’t want to remember it.  Over the course of nine or so months, I was in the hospital more than I was out of it.  My longest stretch in the hospital at once was just over three months.  When I was finally getting close to getting out, there was a new, unexpected complication.  I’d become physically dependent on the opiates they gave me for pain.

 

Don’t get me wrong, the pain was still intense enough to require opiates.  But sometimes in life, you just have to get used to your new normal.  Pain is part of life, now.  Opiate withdrawal, though, is nothing to play with.  That’s another thing no one really tells you or understands until they go through it.  Withdrawal is itself incredibly painful.  It’s like being lit on fire, and nothing you can do will make it stop except more opiates.  What’s more, it’s not a quick process.  Withdrawal can take weeks, if not months.  That entire time you are in pain so bad that you can’t open your eyes, you can’t walk, you can’t eat, you can’t sleep.

 

A Godsend came in the form of a particularly cunty psychiatrist.  She’s a real bitch, I don’t care for her, but she knew what she was doing.  She immediately prescribed Suboxone, which worked like a charm.  After weeks of withdrawal pain, it was gone.  Just like that, a few minutes after I dissolved a little strip under my tongue, all the insidious, mind-crushing, all-encompassing pain melted away.  I still hurt, but it wasn’t the kind of pain you can’t ignore.  This I can deal with.  Sure it hurts, but I can function with this pain.  Before, I was a mess, I couldn’t even get up to walk.

 

At this point, I was on somewhere around fifteen medications a day.  Anti-rejection, anti-emetic, diuretic, anti-depressant, thyroid pills, phosphate binders, pills to make my digestive system work, pills to make my kidneys try to wake back up, pills for everything imaginable.  I’d actually feel full, like I’d eaten a meal, after I took my morning pills.  And noon pills.  And evening pills.

 

I went through rehab as mandated (an agreement is an agreement, and I said I’d do it if they did the transplant).  I eventually learned to walk again first with a walker, then a cane, and now I walk unassisted albeit slowly.  I’m down to taking one medication a day now.  Sirolimus, an anti-rejection med which causes what feels like a cold that never goes away, constant low grade fever, a feeling of always being cold, and impairs your body’s ability to heal normally.  I also consistently have extremely low blood counts (stemming from the kidney damage), low platelets, and some other things that are pretty annoying but not (well at least not always) life threatening.  I get tired easily, am in some degree of pain at any given time, and I’m not too happy about this giant scar I have now.

 

I have over a year sober now, and I’ve had a lot of time to think deep thoughts and consider the past and future.  I’m not sure if I’ll ever feel whole again.  I don’t know if the pain will ever stop.  If I had it to do over again, I’m not sure I’d agree to the transplant in the first place.  I’d accepted dying, and that was easy.  Accepting living as I have to live now is the hard part.  My liver function is great, my kidneys are getting much better and I’m not on dialysis anymore, and sometimes I’m even hungry again.  But what about next time?  The average life expectancy for a male after liver transplant is eighteen years.  That means I’ll likely die by the time I’m forty-six.  And I don’t want to linger.  I’m more tired than I care to admit, more sad than I’d like to be, more constrained by the nature of my condition than I can consent to.

 

I just went to Orlando by myself to see a friend (that same ex that I was talking about earlier, we have since been able to be friends and enjoy each other’s company again).  The flight there made me sleep for a day, and getting back was just as bad.  I work from home at a desk job, but I struggle to find the energy to talk on the phone.  I miss the feeling that at any moment, something amazing could happen to me.  That there could be a new adventure, a new boy, a new job, a new friend, a new hobby, new anything, just around the corner.  Now it feels like I’m a slave to insurance and medication (my pills cost $1100 a month without insurance), and I don’t know how to move forward with self-confidence when I imagine taking my shirt off to a muffled gasp and “Oh my God, what happened to you?!”

 

I try to stay positive.  I think to myself, as much as I’m an atheist and non-believer, that maybe something good can come out of this.  And logically, I know that to be true.  If nothing else, I serve as a wonderful cautionary tale at AA meetings.  I still look pretty damn young, if I do say so myself.  And when you see what looks like a twenty-three-year-old grimace slightly in pain as he lowers himself to a seat after taking the stairs carefully one at a time into an AA meeting, then announce “My name is Jamie, I’m an alcoholic, and I had a liver transplant a year ago”, then you hear his horror story, the details of pain, uncertainty, almost dying multiple times… well, you’d have to be a fucking idiot to keep trying to find happiness at the bottom of a bottle.

 

I guess that’s a good thing, at least.  I never listened to the horror stories because they just weren’t scary.  Oh, you hit your spouse?  That’s not alcohol, you’re an ass, I’d never do that.  You drink and drive?  I never do that, ever, I call a cab, even blacked out.  You lost your job?  I never drink on the job.  So you see, the stories weren’t quite enough for me.  I had to chase the rabbit all the way down before I realized he wasn’t there and I was digging the hole myself.

 

At this point, I’m working to put my mind at ease, to find purpose in living a life with limitations.  I’m trying to not be afraid that tomorrow I’ll get sick again, that I’ll be alone because I’m too ashamed of what happened to me.  I know I can find an external purpose easily enough.  I don’t mind lending support to people trying to better themselves and get away from alcohol or drugs.  If anything, my resolve is now quite concrete.  I haven’t touched a drop of alcohol and I don’t think I will for the foreseeable future.  Or, as they say, all I know is today I'm not drinking.  But finding something that drives me to want to smile and be awake and adventurous in the world?  That’s proving a bit difficult.

 

So far I’m still recovering on several levels.  Physically, pain and exhaustion are a daily battle.  Financially, I’m fairly well off all things considered.  Emotionally I’m pretty drained, but that’s getting better.  I’ve started taking pleasure in small things again.  I didn’t think I’d ever be sitting stone cold sober in my kitchen carving pumpkins with my roommate and enjoy it.  I didn’t think I’d ever enjoy anything stone cold sober again.

 

I wouldn’t say I’m depressed.  I’m sad sometimes, but I know that’s normal.  I’ve made some unpopular decisions, like making sure medical intervention to keep me alive in a similar situation will never happen again and deciding that I truly don’t want a romantic relationship again any time soon.  At the same time, I wonder about a lot of things.  Will my life be the same a year from now?  Better or worse?  Will finally dying hurt as bad as I think it will?  What kind of gigantic beast of a tattoo would I have to get to cover up the scar I have?  

 

I guess I’ll end by saying this.  If you or anyone you know has a problem with drugs or alcohol that is affecting their health, get help.  Don't expect someone to step in and help, because no one will.  YOU need to get help, regardless of how that makes you feel.  Fuck the job, fuck the car, fuck the house, fuck the spouse, fuck appearances, fuck everything except your life and health.  You won’t know how much it was really worth to you until you’ve irrevocably lost it.

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Thank you for being so brutally honest. Your message is powerful, and I hope every single day gets better for you. Gary. 

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You are incredibly brave, and honest, and you're right.  No one will help you, unless you help yourself first.

You wrote this blog for a number of reasons … very few of them selfish. 

I wish you peace and a brighter future. 

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FanLit

Posted (edited)

Another thing nobody tells you about dying is that people who love you will not let you die if they have any possible fucking way to keep you from doing it.”

 

As compelling as your story had been to that point, those were the words that made me cry.

I hope you understand their choice.

There is a saying attributed to Winston Churchill, “If you’re going through hell, keep going”.  You did and you didn’t have to so I believe there is something better in store for you besides being a cautionary tale.

Your eloquent, brutal honesty took my breath away.  I don’t know if I would have had your endurance;  I’d like to think I would for the sake of my child but what you went through, I don’t know.

Happy one year anniversary on your transplant.

  I wish you happy,  sweet Razor. Thank you for sharing.  :hug:

Edited by FanLit
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