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Obedience School Dropout

I was a weird kid. When girls my age were playing with dolls and listening to Mariah Carey, I was playing basement hockey and listening to Nirvana. They wore floral prints and bows; I wore black and begged my mom for JNCOs.  As they began experimenting with makeup, I was covered in dirt and still rocking backwards hats.   I've never been afraid of being different.  My parents taught me from a young age to do what I want to do and resist peer pressure to fit in.  Fitting in is overrated.  You can fall in with a group who doesn't like you for who you really are.  You can lose your true self.  You don't get a chance to find what you truly enjoy.  Basically, you waste time, and time is the most precious resource that we have.  You don't get time back.  So why in the hell would you spend that precious, rare time with people who don't know or appreciate you?  Or waste it doing things that you don't enjoy?  We get so little free time because of all the responsibilities

Let's talk about it.

I'm not like you. 

I'm not like many people.

This isn't a "everyone is a special rainbow" kind of post.  

It's gonna get heavy for about 5 minutes.

I was born with a birth defect in my bile ducts.  When I was 9 weeks old, I turned yellow and needed emergency surgery to remove my gallbladder and clear out the obstructions that were causing me to be jaundiced.  

Everything was normal until I was 18 years old, and I started feeling crappy.  I was tired all the time, blah, and occasionally I would get a weird pain in my side.  Chalking it up to the stress of starting my first year at college, I ignored it and powered through. (Powering through discomfort is kind of my thing.) That summer, the fatigue was so bad that I knew I needed to see a doctor.  Mom suggested that I visit a gynecologist because it could be hormonal.  

The gynecologist decided to run a full blood panel once she learned of my medical history.  She found it interesting that I was never monitored after the surgery and was basically given a clean bill of health for the rest of my life.  Basically, she was just curious and wanted to see how my body was responding after so many years of functioning without a gallbladder.

The curiosity paid off because the blood test results came back with warning signs, red flags, and emergency alarms.  I was called immediately and told to see my primary care physician because my liver enzyme numbers were 4-5 times higher than average.  

I didn't get to see my physician, but I did see a physician's assistant who was convinced that I had mono, and that was the reason for the inflated liver numbers.  The test for mono came back negative.  She switched lanes and became convinced that I had some form of hepatitis, so she sent me back to the lab for a blood test to check for hepatitis.  Here I am - an 18-year old girl - sitting in a lab surrounded by nurses who are dressed in full hazmat uniforms as they test for hepatitis.  Yeah, I had a nervous breakdown.

The test for hepatitis also came back negative.  My primary care physician's office was out of ideas, so I was referred to a liver specialist at one of the largest city hospitals.  

Throughout all of this, I was still trying to balance attending 3 college courses in the summer and maintaining something of a personal life, but it was difficult.  I've battled anxiety and depression for a good portion of my life, and this wasn't helping.  My anxiety was off the charts.  I was also experiencing a worsening pain in my side.  That couldn't be good.

The first appointment with my liver specialist was a wakeup call.  He walked me through several scenarios, none of which sounded fun.  He did a physical exam on my abdomen and said that he could feel that both my spleen and liver were enlarged.  We scheduled ultrasounds, MRIs, and more blood tests.  I told him that I was terrified of needles, and his response was, "You'll get used to them." 

I was 18 years old - barely old enough to go to that hospital, on the border of needing to visit the children's hospital next door.  If it sounds like my liver specialist was harsh with me, he wasn't.  He was actually very kind; he simply wanted to prepare me for what was potentially to come, and he didn't pull any punches.  It felt scary and overwhelming in the moment, but I'm grateful for the way he handled it.  I don't do well with surprises, so creating a skeleton of a plan helped with my fear of the unknown.  

I experienced my first endoscopy a couple of months later.  If you are unfamiliar with endoscopies, the doctor sticks a large tube down your throat and inserts a small camera so they can look at what is going on inside of you.  They can also fish tools down the tube and clear out obstructions, insert stents, and do any other "easy" work that doesn't require surgery.  The doctors found that my bile ducts were almost completely blocked.  They removed all the debris, including some gallstones that had formed over the years, and inserted stents that would help keep my bile ducts open.  This was my first overnight stay in the hospital.

For the next few months, I was in and out of the hospital constantly with endoscopies, MRIs, and office appointments.  I had one emergency room visit in the middle of the night and several hospital stays that were 5 or more nights long.  I was on a strict diet because they still weren't sure what was causing my liver issues.  I lost weight and ended up somewhere around 90 pounds. (Not that I was particularly large to begin with.  Maybe I was 100-105 pounds before the health issues began?  Either way, I was basically a 5'1" bag of bones.) I was depressed, lonely because all my friends had bailed on me, and scared.  It wasn't until they performed a liver biopsy that we finally had an answer. 

When I was 19 years old, I was diagnosed with cirrhosis - a form of liver disease.

The birth defect in my bile ducts had caused a backup into my liver, resulting in significant damage that was irreversible.  Could this have been prevented if I had been closely monitored throughout my life?  Possibly.  But we will never know. 

I was scheduled for emergency liver surgery just a couple of weeks after the diagnosis.  A surgeon from the children's hospital designed a surgery specifically for me.  The surgery would re-route a portion of my lower bowel and basically serve as a new pathway for things to move.  Thus, there would be multiple "escape routes" and less probability of blockages forming and causing damage in the future.

After the surgery and a week spent in the hospital, it was a long road to recovery.  I had a second 10-inch incision across my abdomen (slightly crossing over the incision from my surgery as a baby), which took quite a while to heal due to the extent of it.  The puffiness from the surgery also took a while to go away, so I looked anorexic everywhere except my stomach, which stuck out like I was 8 months pregnant.  I walked hunched over like an old lady because I couldn't straighten out my body while the incision healed.  

6 months after the surgery, I was cleared for all physical activity.  I started going to the gym.  I refocused on school.  I found new friends and new relationships.  I started finding myself again.  

It's been 15 years since that surgery.
I'm doing well.
I'm lifting, running, walking, hiking, playing basketball, and living a mostly normal life.
I still have to wear a mask when I go to work or if I'm in large crowds in a small, public place because of my compromised immune system.
I have blood tests every 3 months to check my liver enzyme numbers.
I see my liver specialist once a year for a checkup.
I have an annual MRI and usually an annual endoscopy, but that's up in the air currently.
I'm on new medication that I started a couple of weeks ago to help prevent future damage, and I seem to be handling the medication pretty well. 

Most people with liver disease don't do the things that I do.  They aren't as physically active.  They aren't paying close attention to their nutrition and wellness.  
Most people with liver disease aren't diagnosed at 19.

Like I said, I'm not like you.

I'm not like anyone.

I'm a complete freaking weirdo who will continue to defy the odds for as long as she can.

Fuck it.
We ball.

xoxo BB 


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