>NOTE: I have no idea why the post's text isn't white like the others. If you know why this is, please let me know.
I've been in and out of the hospital, trying to not DIE.
The sordid tale began like this: In 2009, while working on a game project (Dead To Rights: RETRIBUTION) in England, I experienced an excruciating pain in my left thumb. All the joints were red, swollen and inflamed. When I tried to move it, it was crazy painful and functionally useless. Using a controller to review build updates was a no go.
I showed it to my friend Kota (a med student at the time) and he brushed it off as a minor sprain, told me to ice it and it would go away in a few days. I really wish he had been right. That was in April.
By summer, I was home and meeting with a Rheumatologist, trying to diagnose what kept happening to me. I was doing labs (despite being needle phobic) and regular examinations. At first it was just a joint or two. Pain would be rough for a few days, then disappear. "Rheumatoid Arthritis" he figured. "That's not so bad", I thought.
STRIKE ONE.
A month or so later, it was continuing to get worse. By this point it was hitting me in about 3 separate joints at a time. BIG joints. And it would last for days before cycling to different joints. These "Flares" would completely make that joint unusable until it passed.
So DAY ONE might start out with terrible pain, swelling and inflammation in my left hip.
By DAY TWO the hip joint pain would become unbearable, while another joint (say, right knee) would start ramping up.
By DAY THREE the hip joint would become less painful (but still hurt like a BITCH), slightly less swollen, and a bit more mobile. The right knee would be immobile and unbearable. And the left elbow would be ramping up.
See a pattern? This cycle continued to worsen. So what was it? "Palindromic Rheumatism" my Doc surmised. That was bad... Worse than RA. But surely it couldn't get any worse, right?
STRIKE TWO.
Another month or so passed. I felt like utter shit. The pain continued. I felt exhausted. My limbs had a bit of a tingle going on occasionally. Like when your foot falls asleep. More Tests, more exams.
By this point, I was trying to diagnose this thing on my own. So I'm cross referencing my symptoms online, and I find a match. I read all about it. It's ugly.
I get a call from my Rheumatologist... He wants me to come in so that we can discuss his latest diagnosis. And it's a bad sign when your Doc doesn't want to discuss it over the phone.
So I go in. He says something along the lines of "I've got some bad news for you". He looks uneasy. This is followed by something like "By this point I'm pretty sure I've figured out what's happening to you. It's difficult to determine solely based on labs as it's a bit of a diagnosis of exclusion."
"But I'm fairly certain that it's..."
I can see the letters spelling out the words in my mind.
"WEGENER's GRANULOMATOSIS"
It sucks being right sometimes. But at least you can somewhat mentally brace yourself when you see it coming. He proceeds to tell me that WG is a rare Auto Immune condition that falls under the umbrella of ANCA Vasculitis.
The short version: Your immune system attacks the blood vessels in your body causing major inflammation in the walls of the veins / arteries. Think of thickening the walls of a garden hose. Get's bigger on the outside which makes it constrict on the inside. This cuts off blood flow to that area. No blood = no nutrients, no oxygen to those tissues. If this isn't remedied immediately cellular damage / and tissue death occurs. This is referred to as an "END ORGAN CONDITION".
The shorter version:
"We don't know for sure what causes WG. There is no cure for WG. If left untreated you WILL DIE".
There are two treatments for WG. The traditional treatment is CYTOXAN.
Some (but not all) known side effects are:
Bone Marrow Suppression / failure
Hair loss
Joint pain (irony!)
Slowed healing
And the REALLY fun ones like:
BLADDER CANCER
(as well as other cancer risks)
Acute pneumonitis
(15th leading cause of death in USA)
Progressive pulmonary fibrosis
Cardiotoxicity
Sterility
If that's not a sales pitch, I don't know what is!
The "newer" treatment is RITUXIMAB.
Some (but not all) known side effects are:
Cardiac Arrest (Possible Death)
Cytokine Release Syndrome/Storm (possible death alone or from resulting Pulmonary Edema)
Tumor Lysis Syndrome
(leading to kidney failure)
Assorted Viral infections
PML-Progressive Multifocal Leukoencephalopathy
(usually fatal)
Immune Toxicity
Pulmonary toxicity
and my favorites
Bowel Obstruction and Perforation
Of course at the time, the only significant risk they told me about was PML. Most of the others were not yet known, but one life changing complication that I would become intimately familiar with WAS known (since 2006)... Sadly, nobody made me aware of that risk. Isn't medicine wonderful?
I got a second opinion. BOTH treatments can kill you, and doing nothing is GUARANTEED to kill you.
So I chose Rituximab.
By late August I was on my way to the ER with a new symptom: agonizing abdominal pain. They gave me IV morphine for the pain. It didn't even touch it. So they gave me IV DILAUDID. That took away the pain... At least long enough to kick me out the door.
A few days later I was back. More of the same. DILAUDID. Send you home.
By my third ER visit I was begging for a CT scan. And they complied. But in retrospect I'm certain that nobody looked at it. If they had, somebody would have noticed a MAJOR problem was underway.
My forth ER visit was getting ridiculous. I honestly don't remember too much of it. I was in so much pain that I was pretty out of it. And they were all starting to blur together in my mind. They sent me home again.
Then came September 6th, 2009: The Day the World Went Away.
(continued NEXT POST)
That's heartbreaking. I never read facebook so I had no idea what was going on.
ReplyDeleteBy the way, this post showed up as black text on a black background on chrome on android, even after reloading. It seems appropriate. I had to highlight to read.