Tuesday, March 13, 2012

Part deux

I was really sick this time. I was losing weight fast. First 2 lbs, 5 lbs, 10 lbs, 20 lbs until I was at 114-116. I am 5' 7". That is not healthy. The red demon was back visiting and along with him he brought his friend diarrhea. What a party! I was exhausted. Weak. Just plain tired, but I wouldn't let this get me. I had PLANS for this year. I was in the musical at school. We were doing Crazy For You. I was LOVING it. I was up at 5:30-6 every morning for rehearsals for choir. We would be singing in the halls before the musical. Being in Jazz Choir, we were required to be there and perform. Several of us in the choir were also in the musical. Rehearsals were everyday after school until about 7-8 at night. It just depended on the day. Well obviously, we needed to eat dinner at some point. So most of us would take a break when the leads were rehearsing and run to get some food nearby or hit the vending machines. Chips, pretzels, candy.. all that fun stuff. So you can imagine what this was doing to my poor digestive system. I lost weight. I had to get my vest for my costume taken in because I was getting smaller everywhere. I was pushing through. Trying not to let this get the best of me. I tried napping in the auditorium seats. I even skipped a class or two to just rest. Finally though... enough was enough.

My mom called Dr. Mizell. This time though... He wanted to admit me to Primary Children's Medical Center. My Dad called the musical director, who was not very happy that I was in the hospital but agreed to hold my spot for me. There would be a few numbers that I would either have to learn or just sit out of. It was all I could think of. I just wanted to be normal. Back on the stage with my friends. I was freaking out. I'd never spent more than 2 nights in a hospital. My mom was visibly worried but was trying to stay calm. My hematocrit level was really low. I wasn't holding liquids down as fast as they were leaving. Again...the red demon was lingering. I had IV meds (steroids), fluids, several blood tests, scans, exams, samples etc etc etc etc. I felt like the human pin cushion. I WAS the human pincushion. I spent the next 5 days there being poked and prodded. I just wanted out of this sterile nasty hospital and back to my own bed away from the tubes and machines. Thankfully things turned a corner and I was able to go home. I felt better, but not right. I kept my weight at about the same number but really struggled with my hematocrit level and fatigue for the next few months. Another flare happened, more medicine. Then it was my senior year before I knew it. It started out fine. I had friends, I had made it into Madrigals (the choir most seniors were in), I was on track to graduate. Things were good. And then they weren't. AGAIN. I auditioned for Bye, Bye, Birdie that year. I was in the chorus. I was happy. Then I started to have that same old feeling. This time though...it was THE WORST it had ever been.

This is where things get a little bit vague and fuzzy for me. I realize now that I was running on nothing. My hematocrit (blood level) was shockingly low. The average is 36-45. I was at 21. Then 19. Then even lower. I could barely move. I didn't want to eat. I just wanted to sleep. I stayed on the couch, I missed a lot of class, and my job as well. Finally, my parents called Dr. Mizell. I was admitted to PCMC AGAIN -____-

This time though things were bad. Like...horribly awful.

I was put on TPN, total parental nutrition through a nasogastric tube. That was some fun times...

I kept blowing IV's, 12 in 4 days, so the pic line team came and put a central line in my right arm. It was nice to not get poked for blood anymore. They just took it from the pic line. I was on a clear liquid diet. I was on steroids, pain meds, anti diarrheal's, and put on quarantine. I couldn't leave my room until they figured out what was plaguing me. I lost weight again. This time landing around 100 lbs. The Bleeding wouldn't stop. Nothing was working. I just wanted to die. I had been at the hospital for over 2.5 weeks. I was SOOOOO over it.

Dr. Mizell wanted to perform a colonoscopy to see what was going on in my intestines. He also wanted an endoscopy done of my throat and stomach. He did the test and my images came back looking like ground beef. Straight up actively bleeding hamburger intestines. That's what I had.

The kicker? My esophagus was being eaten away at the bottom from all the reflux coming up. He wanted to do a last ditch effort. He wanted to try a "new" drug, in fact I was the first person in Utah to receive it in 2001. It was called Remicade. It's widely used now, but back then it was cutting edge. We tried it for 3 days...nothing changed. Then the decision was made. The one that really altered and scarred me, literally and emotionally, for the rest of my life.

1 comment:

  1. You really know how to leave a person hanging! I'm not gonna say I "enjoyed" reading this, but I have definitely learned a lot. I have a deeper appreciation of not only what you went through, but also your excellent descriptive writing style. I hope working on this has been helping you.