Friday, November 30, 2007

My Dying Blood

One of the first things you notice is that music dies.

If music is an expression of sound and silence, and in our particularly North American way divided into repetitive tones and predictable timing, it dies when your hemoglobin/red blood cell count reaches around 80.

It seems the brain doesn't like to process fast things, things relying on quick thinking, things relying on reactions and timing. So music goes, relegated to the back of the brain in the form of an abstract concept. I can hardly understand what it is to play in a band. I can listen to music, but not from an emotional state. Just from a distance. Country sounds like metal sounds like techno.

So music dies. Buddy Holly notwithstanding.

Like one doctor said on my last stay,

"It's like that movie, Apollo 13. When they lose their oxygen tanks and the guy has to put up the sign on the controls so he won't push them. Then he calls Houston and says, 'We're getting kind of punchy up here,' it's like that."

You walk less. More time in bed. You talk slower. Ideas, concepts, all process in bits and chunks, sometimes trailing off into nothing.

Day 1 Hemoglobin count. 150. This is high and healthy. Lots of red blood cells still supplying oxygen to my body.

Day 2. 129? It's dying off. Eleven points isn't bad.

Day 3. 110. 19 points in a single day? Have I ever hemolized this badly? No. I don't remember this.

And so forth. Until I reach 70. Then they transfuse. Cardiac arrest can happen under 60.

I remember having a blood count close to 60 last time... walk five feet to the bathroom, return to my bed. Wait a half an hour for my heart rate to go down. Feel my jugular pulsate with the effort, chest heaves, vision clouds in at the edges every time my chest squeezes my heart to maintain oxygen in the body.

My dying blood. What would normally make for a great My Chemical Romance song title is actually medical truth.

When they transfuse, it's unnerving. 50mg of Benadryl first, to prevent adverse reactions to the blood. And two tylenol. Benadryl knocks you out, sometimes literally. The bathroom is history - you're pissing in a bottle by your bed. And the effort of standing up is coupled with the feeling of your knees buckling and head spinning.

A nurse walks in with bag, redder and thicker than it should be. She hangs it on the IV pole. Printed on the order is,

"INCOMPATIBLE - TRANSFUSE WITH EXTREME CAUTION."

Nurses transfuse in teams of two, checking and double checking the blood order against my wristbands.

They start the IV, and I watch the blood creep down the medical tubing. Someone's blood. Who knows. It takes three hours a bag, 250ml of someone's blood, keeping me alive. I begin to think in metaphors.

I get the blood, two bags at a time.

I instantly hemolize them. My urine looks like cola.

These things happen, right? People have medical conditions all the time. I'm not being punished. I don't think. Am I? I'm not. I can't be. No, stop thinking. You're thinking too much. These things happen... these things happen. This is a good hospital system, you're in good hands. You have good family. Why am I trying to kill myself? Do I move around? Drink more water? What am I doing wrong? Ask about different medications? My God, that's a lot of steroids. I'm not being punished... I'm not. I'm not. I'm not...

I'm transfused for close to 16 units of blood over the course of my stay... the human body only holds about twenty. As I write this, I still live on someone else's blood.

If I was a Jehovah's Witness, I'd be dead. Or apostate. What a strange thought.

They'll continue to feed blood into me until my surgery.

Thursday, November 29, 2007

Andrew, Doug and the hematology ward.

I spend a night on the cot in between my companions, and the next day I learn that I will be transferred to the hematology ward. This will be one of two times I am in the proper ward for the condition I am treated for. This turns out to be very common.

When I move into my new room, I am greeted, or not so much greeted as gazed at blankly, by "Andrew", a ninety year old man who is attended by his wife and friend. He's a neurology patient, displaced in hematology, like I was just displaced in post-op. Through conversations with his visitors, I find out he just got a bed after being in emergency for four days. He's suffering from a far-reaching and developed degenerative brain disorder. His nurses meet him:

(Loudly)"What's your name sir?"

"..."

"...Andrew."

(Loudly again) "Do you know where you are?"

"..."

(Loud) "You're at the University of Alberta Hospital. Do you know what day it is?"

"..."

(Loud) "We're wearing poppies. It's November. Do you know what day it is?"

"..."

And so forth. At night, he incessantly scratches at his bedding and plastic bed guards. He grumbles and moans. He pages the nurses.

"Nurse, I need my light turned off!"

"It's already off, Andrew."

"Oh.... oh. Thank you."

(Repeat 5-12 times)

The nurses know me from my last visit, and amazingly, when I mention that he stays up all night, he's moved into another room. I didn't ask for this, I feel kind of bad, but... sleeping in a hospital? It's already hard, and it'll gain a whole new level of horrible in the coming weeks.

I destroy Vanessa at Scrabble. Not bragging or anything. I'm still good enough to play Scrabble.

Andrew moves out, and Doug moves in. He's a fifty-something guy with an oilfield consulting firm, he's got great spirits... and leukemia. He's in for a day for his second last dose of chemo. Cancer destroyed his body in about a month, and the doctors tell him that if he hadn't come in for treatment right then, he would have been a month late from being sent home to die. He says,

"Whenever I feel bad for myself, I just head on down to the Stollery... and when I see those little kids that got worse than whatever I ever could get, I think, 'Doug, suck it up.' "

Over the next few days, several things transpire:

My surgeon visits, but not before his reputation does...

(Nurse): "Dr. Briesbois? Oh, you're lucky."

(Dr. Ritchie): "Briesbois is in the military and consults with the military. So he performs surgery and jumps out of planes. He's flying back from Ottawa from a meeting with some generals. He's our best."

(Christina Prins, friend to Vanessa and OR nurse at the Royal Alec): "You're having surgery? Did they give you Dr. Briesbois?"

(Dr. Woods, another, more different Dr. Woods, a hematology resident): "Hell, Briesbois could do my job and his job."

When the surgery is confirmed and I finally meet him, I can't escape the feeling that he's larger than life. He's brisk, well-spoken, and to the point. Little chit-chat. He tells me that the splenectomy can be done lapriscopically, meaning that instead of creating a jack-o-lantern-like scar across my midsection, then make four small incisions, go in with a jackhammer and a vacuum, chisel the beast out, and my healing time is drastically reduced. That is, assuming my spleen isn't vastly enlarged.

When we talk, I've heard most of what he has to say due to discussions with other doctors... but something does stick in my mind:

"When I say you lift nothing over five pounds for six weeks, I mean that. This is the third time I've said it. Young guys always overdo it. So if you go gung-ho and herniate yourself, don't come crying to me to operate."

Fair enough. But the only thing under five pounds in my job is the coffee filter. It's gonna be a weird recovery.


Also, I learn about the more far-reaching reasons for my splenectomy. I will summarize these in point form, because of the stupendous amount of depressing information they contain.

-My spleen is aggravating all of this, if not causing it. If I have this condition in the future, and with my spleen in, I will have to take more prednisone (steroids). The amount of prednisone I have already had leaves me at risk of being a bent, broken, gelatinous mess by the time I am forty.

-The splenectomy has a fighting chance of working. This is not a guarantee, because I have a variable type of autoimmune hemolytic anemia, (fluctuating between a warm and cold type) and this is considered medically implausible, if not impossible.

-If the splenectomy doesn't work, I then receive a series of injections that resemble chemotherapy. They are harsh and cost $20,000 for four shots.


Many people visit. Friends, family. Notably, my grandparents come. My grandfather was diagnosed with terminal lung cancer over a year ago, and given a three-month "pink slip." I remember seeing him in his hospital bed... the great hunter, welder and man of the land, whithered to almost nothing, unable to keep down food. Now he's in remission, strong, hair back, and looking at me in my hospital bed. An odd, surreal reversal, though not to the same severity of what he encountered.

So far, I am still relatively healthy. I'm thinking this episode will be no more than a simple repeat of the past ones. But I'm not really prepared for the feeling of being trapped in a body trying to kill itself. That comes soon.

Overnight in Emergency... and then a bed.

"So, did you try to kill yourself?"

No audible answer. It's eleven at night and these words issue forth from under the curtain next to me.

"Did you try and hurt yourself?"

Still nothing I can distinguish.

"There's nothing we can do for you here, we're going to release you. OK?"

No one has come to visit this person. I've already had plenty of company.

At this point I'm glad for the Ativan the nurse offered me. Emergency rooms are not for sleeping, and if you manage to pull it off without sedation or other chemical assistance you're a real trooper, or a three-toed sloth.

I turn to my side on the stretcher, cover myself, position my IV so as not to kink it, and trust the drugs to guide my sleep.

I've already been through my meeting with Doctor Bruce Ritchie and his horde of cohorts, and learned that I will most likely be losing my spleen. I have also been issued a massive dose of steroids - a thousand milligrams of Solumedrol, a liquid that they blast through the IV in order to disable the immune system, in hopes of slowing the death of blood cells. In comparison, Prednisone, the other immune-system disabling steroid I will soon be taking, is considered a high dose at 100mg a day. Turns out I'll get 3000mg of steroids in my first three days.

And at 150ml an hour, the Solumedrol burns the wrist and leaves a wickedly bitter taste in the mouth. And after the steroids, the doctors and the suicide watch next door, the first day is over.

When I wake, it's to a tech taking more blood. Nothing like leaving flannel sheets and a down comforter at home to be jabbed by a needle in the early hours in an unfamiliar place.

I check the clock - 7 am. I wonder how long I'll be in emergency. I'll be told later that the U of A hospital has run at 110% capacity for the last decade. That just might factor into how long it takes to get a bed.

I get sent for a x-ray, and by the time I get back, I have a bed. I'm immunosupressed and they don't want me catching any diseases in the emergency room. A porter wheels me up to a post-operative surgery ward, which has nothing to do with my condition, but it's a spot, somewhere, and not in the emergency room. And it's.... snug. I'm in a room considered "capacity", where a semi-private room normally with two beds has been issued three - with me on a stretcher in between two patients. It's about wide enough for the stretcher, and I bang my legs on the bed next to me when I swing my legs over.

Although I'm only with them a day, my infirm companions are amiable despite the circumstances. Being post-op, they're in pain and discomfort.

To my left, a man who has had part of his anus removed due to Chron's, and on my right a man with bone cancer. I'm definitely in better shape than these guys.

Vanessa shows up later.

"Jeremy's sending a laptop."

"What, you didn't ask him for one, did you?"

"No, I called to tell him you were in here and he just offered."

It turns out I have some golden friends... and this will be revealed more as things get heavier.

Wednesday, November 28, 2007

The Emergency Room

There's alot of young people here. A few young girls I notice, some clutching sides, wincing, breathing short breaths.

Wait, there's alot of people here... just people. This is a busy place. It's pretty miserable. As Ben Gibbard said of the ICU, it's the place "where we only say goodbye." It's not all epic and sad as a Death Cab song, but it's getting there. As I learn later, the five-hour wait is not only because the U of A emergency clinic is plain busy, but also because it's a major trauma center.

But I'm not in trauma right now. I give my information, proceed to this seat, talk to this lady, move back to this seat. So we sit, and sit. Watch the half dozen people that came in before me go in.... and a dozen or so people that came after me.

I laugh to Vanessa about the last time I was in the emergency room, how my mother bought me this green blob labeled "Medi Wrap" from the cafeteria, and me, horrified, not knowing whether the "Medi" stood for "Medical" and not the intended "Mediterranean", chewed hesitantly through it.

Of course, later Vanessa buys me another one, and it consists of a green tortilla shell, and cheddar cheese. More cheddar than any digestive tract should be forced to endure.

Eventually my name is called, I'm shooed through a door, behind a curtain, and a young emergency doctor with a name tag reading "Dr. Woods" sits down in front of me. He flips through a chart and says, "You're definitely the most interesting patient I've seen today."

I get that a lot.

My mom shows up. She brings (real) sandwiches, and a notebook full of arcane medical notes and information from my last episodes. I'm going to need this book, it turns out. I'm shooed out of my curtained cage, into a cage with windows and a stretcher, and sit for a couple more hours with my mom and wife.

A hematologist stops in. I don't recognize her from my previous visits. She ballparks my condition, and then mentions a name I do know: Dr. Ritchie. The senior resident hematologist that worked on me the last time. He'll be stopping by, apparently. She leaves.

A nurse comes in, fits me with an IV. That's always unpleasant. A blood tech comes in and draws all the vials neccessary for a CBC differential test, and a few others, oh, and to match my blood with the Alberta blood bank for the transfusion. And while I can't explain what that is to you in detail for lack of understanding, this will amount to close to twenty vials of blood within my first 24 hours in the hospital.

Things aren't even saucy yet! Bring it on!

Another hour later, the curtain parts as if a show is about to begin... in walks Doctor Ritchie. I smile. He's a good doctor.

Followed by the aforementioned hematologist, another hematology intern, and two internal medicine residents. There are now five doctors looking sympathetically at me. I smile less.

Ritchie stands by my bed, sticks his hands in his pockets, rocks on his heels. He levels his gaze at me, and cutting out all pretense of bullshit, says:

"We're going to yank your spleen."

I stop smiling. My mom isn't smiling. Neither is Vanessa.

My blood work isn't even back from the lab.

Before the First Day

Well, I spent alot of time in the hospital. Alot of strange, inexplicable medical phenomena have occured in the past few weeks. And since I have some time on my hands, maybe I can entertain and enlighten as to the journey of a hospital patient with a strange and rare disorder... and a side helping of complications.



"Hey Ness."

It's Wednesday evening. I've taken a couple days off work because of a bad case of the flu. I look down at the chair, my hands fidgeting over the top brace. My wife looks at me.

"I...uh... don't want to freak you out. But my urine's dark."

She blinks. She's less surprised than I thought she'd be. She already knows. That's better than I thought.

"Yeah, you're a little yellow."

"We can do this right? We have money? I have a good health plan. We have family. It'll be alright."

Vanessa nods. She's doing OK, I can tell. I'm glad. We both knew this might happen again someday. I've had it three times in the past, once when I was sixteen, and two bouts close together the summer before Vanessa and I got married.

So, without blood work, without an official diagnosis, without a hospital visit, I know: I have Auto-Immune Hemolytic Anemia. An impressively rare immune disorder that involves an over-eager, overactive immune disorder chewing through my red blood cells like German troops through a French border. My skin is yellow because because the breakdown of blood produces bilirubin, a blood byproduct which makes your arm turn yellow a few days after you get punched. My urine's dark because my kidneys are expelling dead blood out of my system as my body kills it.

I'm not really nervous at this point, I've done this before. Hey, it's like a vacation, right? Get jacked up on steroids, sit in a hospital room for a couple of weeks, play some video games. Wait for the hemolysis to taper off. Maybe a transfusion. It'll be a mini-vacation. Right?

"So, I guess we'll call your work. Tell them you won't be in for a while. Then off to the U of A."

The Wetaskiwin Hospital is three blocks away, but I know in all likelihood they've only read about my condition in textbooks. Same with the Leduc Hospital, Gray Nuns, Royal Alex, or any other hospital in the province. They wouldn't know what to do with me.

So the next morning I call work and tell them not to expect me for a few weeks. I pack a bag with clothes, magazines. We start to drive.




Next.... emergency.