007: September 2nd.

When I was thinking of the subtitle of my blog I initially wanted to include Crohn's Disease. Kind of like paying homage, paying my respect for the fact it was the very thing that started this all. Technically, I was diagnosed with it first. Like a principle thing you know? But honestly, I wanted to make a pun on the Promise from the Declaration of Independence. That is, Life, Liberty; and the pursuit of happiness. [go look back at blog title, lol]. 

Crohn's is one of those kinds of diseases where you get diagnosed, and you don't really think it's that bad until you've had an ACTUAL bad day. I had my actual bad day on, SEPTEMBER SECOND, TWO THOUSAND and FIFTEEN. Yes, that is the very inspiration for the title of my blog. It was the day my life changed forever. The visions of who I thought I was going to be were all destroyed that day. As long as I live, I will remember SEPTEMBER SECOND. Don't get me wrong. I threw up everything including water for two straight weeks, lost 27 pounds, and could barely hold my cell phone when I finally found out I had Crohn's Disease. But that was not my bad day. 

I remember it like it was yesterday but yet it's all still so hazy. My doctor walked in as I was talking to my grandpa. He had the "my puppy just died" face, a facial expression I've come to recognize from the medical types over the last year, that almost always means bad news is pending. 

A piercing silence spread over the room as he opened his mouth, trying to steady himself for what I'm sure he's said plenty of times, "the results are back from your lab test" he said.  "There's nothing more we can do, but we will make you very comfortable. You won't feel anything". All I remember thinking was "well damn, I guess I'm having a bad day". Ha ha. I didn't cry. I was just stunned. My grandpa isn't the type to show emotion, but that day tears rolled down his face. 

You see, I wasn't diagnosed with Crohn's Disease on 090215, I was diagnosed August 8, 2015 after my mom made me go to the ER. She bought me all sorts of over the counter things and none of them worked. THREE weeks in the hospital, a dozen doctors telling me it was a virus, and a colonoscopy endoscopy later. One doctor actually insisted on sending me home after I'd been in the hospital a week and was still throwing up my liquid diet. Apparently it had to be some death virus. 

My actual bad day came after an accumulation of really great days actually. I'd been taking Sulfasalazine to treat my Crohn's. I'd say I took it for about a month. I was also taking Prednisone. You're probably wondering what's the significance of this. Well prednisone is a powerful steroid they give people when they're having severe anaphylaxis or severe inflammation. It slows down allergic reactions and quiets inflammation. I was taking it for the later.

Turns out I'm deathly allergic to sulfa, the primary ingredient in sulfasalazine. When I got to the hospital on Sept. 1, 2015 I had red dots all over my body, I was itchy, I felt lethargic, and my fever was in the one teens. I didn't even know how sick I really was. While I was taking the sulfa, it was slowly killing me from the inside out. The prednisone was slowing this process until my doctor began to taper my prednisone dose from 100mg a day. Once that taper began the flood gates of hell opened. 

The manifestation of this allergy was a skin rash. Unbeknownst to me, my liver was failing, my kidney's shutting down, and my lungs' lowering there oxygen capacity. By the time I walked into the ER on 090115 I was already in critical condition. My bilirubin was 7 (normal 0-0.1), my liver enzymes were in the thousands--4700 to be exact--(normal 0-30), and my bodies vitals were in the trash. My white blood cell count was so high and red blood count so low, the doctor ran the test twice. 

I remember them rushing me to a bed. The nurse took my vitals and she literally turned white. She handed another lady a red paper. The ER Doctor came in and immediately gave me an epinephrine shot and put me on fluids. Oh yeah I was severely dehydrated too. She said, we'll wait an hour and if it doesn't slow down I'll give you another. Hour came and went. I was checked in to the telemetry unit (heart ICU). Apparently was heart was working so hard it was clocking 120 something resting. My blood pressure was 206/102. I spent 21 days there. 

The ER Doctor had no idea what was wrong, while neither did my attending Doctor in the beginning either. He ran over 100 blood tests. I remember him telling me he stayed up 24 hours and called all his doctor friends to see if they ever had a patient present with these symptoms. He later figured it out after he thought it was "too late". Hence the 'you're going to die' remarks. Turns out I had DRESS Syndrome. Dress is a rare disease that people with autoimmune diseases are susceptible too. 

The acronym Drug Reaction with Eosinophila and Systemic Symptoms (DRESS) was first used by Bocquet and colleagues in 1996 to describe patients exhibiting a drug-induced condition characterized by an extensive rash, fever, lymphadenopathy, hematologic abnormalities, hepatitis, and involvement of the kidneys, lungs, heart, or pancreas. The onset of symptoms is often delayed, occurring 2–6 weeks after drug introduction. The incidence of DRESS has been estimated to be between 1 in 1,000 and 1 in 10,000 drug exposures. It carries a mortality rate of 10–20% with most fatalities the result of liver failure. 

So why was I going to die? My liver was failing and had been doing so over the last month. By the time I came in it was too late to reverse the process. They even put me on the liver transplant list (still on it). So not only was I dealing with Crohn's, basically in so many words my body was shutting down. It couldn't sustain the level of sulfa that was in my body. I was taking 300mg a day for an entire month. I was constantly in excruciating pain. I felt like I was on fire all the time. My insides had a dull pain that was constantly gnawing at me. My skin hurt to touch. Sheets, blankets, clothes, cups, everything hurt. I couldn't even hug my visitors. 

It's the craziest thing preparing to die. Like are you fucking serious? What do you do. I hadn't even really lived yet. I think I handled it well. I only remember losing my shit on someone one time. I think it was my doctor. I mean I cried all the time and everyday. Sometimes more than others, but I kept a good face when there were people near. People came to pay their respects. All the crying. Friends from elementary. My biological parents whom I hadn't seen in twenty years. Trying to make peace with everyone in your life is exhausting. Getting your affairs in order. Not to mention just being in the ICU with people dying left and right. It was an experience for sure. I hated the skin peeling off the most. I was hideous. I refer to this time period now as the Freddy Kruger phase. I couldn't feel the pain eventually. I mean the doctor certainly kept his word. I was high as a kite daily. I began to be able to function like this, but it was still an out of body feeling. 

I lost the use of my legs. Like I could walk but I couldn't sustain my own body weight by myself. I couldn't be mobile without assistance from a nurse, a wheelchair, or walker. I couldn't even lift my legs into bed after the nurses helped me in. I slept with my room below freezing temperature. I remember everyone used to wear winter coats. I became accustomed to nurses and doctors coming in my room every hour. Constantly monitoring my heart rate with this little iPad device. It had to be stuck on my heart. The pads hurt so bad. I was on oxygen. I had a feeding tube. I had a picc line so they could always have me hooked to an IV without having to find a vein. Taking drugs three times a day. Being on a liquid diet but begging friends and relatives to bring me food so I could taste this or that one last time. 

But then the unthinkable happened. Enough people prayed. Enough positive vibes were sent. My doctor tried out this treatment and I slowly began to recover. The life returned to my body. After enough days with stable vitals and my liver enzymes not continuing to skyrocket, I lived. I could leave. Well so I thought. I was sent to an inpatient rehabilitation facility to hopefully be able to re-enter society again. Being confined to a wheelchair for the rest of my life I had to learn how to do stuff so I wouldn't need a home health nurse or be able to live independently. 

And then the real battle began... To be continued.

Ox.