Monday, September 27, 2010

Hepcat: Raising Awareness!

Hepcat – 2 dictionary results
[hep-kat]
noun Older Slang
1. a person who is hep; hipster.
2. a very hot woman, usually with double-d’s, that has been diagnosed with autoimmune hepatitis.

Origin:
1930–35; Americanism ; hep + cat [1st iteration]
2010; Social Networkism; famous + ray + awesome + ness [revamped usage]



I am here to raise awareness like only I can! Well, maybe Stephen Colbert can do it too, that guy is a genius. Either way, many of you have seen some posting on Facebook between Nelly and me regarding her health and my sanity. Many of you have been concerned and don’t understand what is going on in our lives – this post will clear things up for the masses and at the same time should count as a Public Service Announcement.

Autoimmune Hepatitis is a crazy, wicked condition where the body’s immune system fights against the liver. This is not a pitty-pat Floyd Mayweather type fight. This is a Smokin Joe Frazier vs Muhammad Ali THRILLA IN MANILLA type of throw down. If the liver was a heavybag, the immune system would be Iron Mike Tyson (before Robin Givins and without the face tattoo). The immune system attacks the liver with the ferocity of a spider-monkey going after a cupcake – complete devastation.


Before her diagnosis, I knew nothing about the liver. Here are the big points of what I learned: (1) The liver is necessary for survival; there is currently no way to compensate for the absence of liver function and (2) The liver is the largest and most complex organ in the body. Talk about paradigm shift! I had always assumed something else was my largest organ. After learning these 2 facts, I understood seriousness of this disease.
The symptoms are hell to follow and don’t make much sense until they are looked at holistically. Here is the list:
  • An enlarged liver – how the F am I supposed to notice that one!?!?
  • Jaundice – this set in very late and I’ll get to it
  • Itching – like a dog with ticks. Nelly actually bruised and broke the skin from scratching. Just had this flare back up last week.
  • Skin rashes – didn’t have this one
  • Joint pain – like an old man on a cold winter day, only wanting to eat soft carrots in his stew. We still deal with this one too.
  • Abdominal discomfort – imaging eating chili cheese tater tots, pepperoni pizza, red vines, grape juice, a V8, and a bacon double-cheese burger. All for breakfast. Before a 2 mile run.
  • Spider angiomas, or abnormal blood vessels, on the skin – didn’t get this
  • Nausea – see “abdominal discomfort”
  • Vomiting – not so much
  • Loss of appetite – when things were bad, Nelly lost 15lbs in 10 days
  • Dark urine – I don’t watch her pee
  • Pale or gray-colored stools – I don’t watch her drop deuces, even though she’s asked…
So there it is. These symptoms came and went for about a month. Never any of them together, just 1 would crop up. The real reason that Nelly went to see a doctor was due to fatigue – which for some reason is not listed as a symptom. Damn Witchdoctors.

We had just moved to the Great State of Texas and Nelly wasn’t feeling too well. Everyone figured it was the stress of the babies (the little ones are 11 months apart – couldn’t keep her off of me). The doc decides to run some routine blood work – that’s when things got real bad real fast.

After her results came back, we are off to a GI for a liver biopsy. We didn't know anyone here so I had to drop her off at the surgery and watch the kids at home - crappy huh? We got the results the next day: Autoimmune Hepatitis. It's google time! I research and find out what we are up against.


By this time Nelly's eyes are yellowing and she is looking like Nicole Ritchie or any other cracked-out whore that you can think of (she was losing a lot of weight). The next day her body crashes like the Titanic going into an iceberg - she is going down. She calls her GI and he makes arrangements for a stay at the hospital. We get to the ER and she is immediately hooked up to medicine and machines - like an entertainment center with a bluray player, plasma tv, dvr, xbox, ps3, wii, surround sound, and a vcr all connected in the living room. She is hit with a flood of morphine and steroids that would put a baby rhino to sleep. It's 2 AM now and by this point her body is completely yellow from the jaundice. She actually looked like she was made of wax...I wait it out for 10 hours while she slept. I never left that night; I had to be there if she took her last breath.


Everything was rushing through my mind for hours on end:
  • What am I gonna do with 3 bad ass kids?!
  • How are we going to get back to California?
  • Who is gonna watch them while I have to work?
  • Where am I going to work?
  • How am I going to raise them?
  • What am I going to do without the love of my life?
  • Am I strong enough to deal with this?

I prayed with all that I am on that night. God did answer my prayers. Here we are years later and she is with us. She was in the ER for 48 hours and then moved to a room for a week. We found out a few days later that she had hit stage-2 liver failure and they weren't sure she would make it. The doctor said that after a day of treatment her liver numbers were cut in half and they couldn't understand how well the treatment was going. I serve a Great God.


Now she is on treatment per the witchdoctors that we see on a regular basis. So that we are clear, there is no cure for autoimmune hepatitis. There is no "remission". There is ONLY "treatment". The treatment is meant to weaken her overall immune system so it doesn't go all Chuck Norris on her liver. No one can stand up to Chuck Norris. So she takes a cocktail of pills. Which is awesome because they offer their very own special brand of happiness: side effects.


We have learned to manage these extremely well (when things aren't in flux). When her regular blood work shows that her liver enzyme numbers are high, the voodoo priests start messing with the meds until things look right to them. This causes some issues around the house. It's mostly the steroids. As any one can imagine, being pumped full of steroids has the effect that gamma rays had on Bruce Banner - they make you Hulk up at moments notice. Besides that, there is the sleeplessness, increased appetite, high anxiety, increased spurts of energy, and deep, hard crashes. It's pretty much like living with a tweaker. Except there are no glow-stick shows in the club.....Dizziness and abdominal pain are daily reminders of the new meds.


To meet Nelly or to chat/talk/laugh with her, you would never know that she is sick. She never asks for help and does all that she can for everyone else. She is the most compassionate person that I know. She is also crazy; this is not a side-effect of the disease or the treatment. It's her hot Salvadorian blood ;)




Is me writing this some type of therapy for me? Oh HELL TO THE NO! Someone as great as me doesn't need therapy - I need to be famous. This is me sharing my thoughts as I always have; my style with no regrets.


So, why am I truly writing this.....? When I was on my way to the hospital on the 3rd day of her stay, I was talking with a good friend of mine. This is what he said to me:


Imaging how hard it would have been if you weren't a believer - you're church family was there for you. These things happen so that we can witness to God's greatness. People get the flu or get sick and they get over it. No one thinks that's a miracle. She was there dying and God made sure that she was here for you and the kids. What is happening to Nelly and your family is going to be a testament to his greatness. She is going to survive. People will listen to this story.


I am writing this story because it is long overdue.

2 comments:

  1. Well said. God Bless you and your family, Ray.

    ReplyDelete
  2. I can never hear this story enough. How my great friend Nelly has been though so much. And she is still kicking and screaming. You are truly a God send to her. You both have gone through so much.
    Love you both!

    ReplyDelete