I don't talk about my sickness to people. Only my closest friends and family REALLY know what I go through on a daily basis. I don't speak about it for one because I don't want sympathy from people. I also don't talk to much about it because of the negative memories I have from when I was first going through trying to figure out a diagnosis. There was a time that I was lying in a hospital bed surrounded by family and my boyfriend at the time that I honestly didn't think I was going to see another day. These past few days while in the hospital many of you DM'd me asking what was wrong and I always give the generic answer, "I was born with a bum liver". I really sat and thought about it and instead of being ashamed or scared to talk about it I figured I should share my experience. It might help someone that is going through the same thing that I am or did go through.
In 2007 I got really sick and the doctors couldn't figure out exactly what as wrong with me. The simplest solution for them was to blame it on my gallbladder. A few tests came back and showed that I had gallstones in my gallbladder. I went through a surgery to have the stones removed and went back to being my normal self for a little while, only to end up feeling worse a few months later. In February of 2008 I went through another surgery and had my gallbladder removed. I felt great for a short time and then got extremely sick. My liver enzymes were through the roof. I was losing weight at a rapid rate and my pupils were constantly dilated. I checked myself into the hospital and stayed there 7 days. I under went countless test from echo cardiograms to every blood test, breath test and MRI you can think of. After an exhausting 7 days everything came back normal except my blood test still showing I had elevated liver enzymes and my stress test came back a little abnormal. Frustrated and tired of feeling sick I literally walked into a random Cardiologist, Gastroenterologist and Urologist to get some answers.
The cardiologist sent me to an Electrophysiologist to see if they could figure out why my heart would randomly beat unnaturally. After a few tests it came back that I have WAP. Its a condition that causes your heart to randomly without warning cause your heart to not beat rhythmically the way it should. It causes shortness of breath and can often make you feel as though your going to pass out. There's nothing that can be done to ensure that WAP can be fixed. There is however a treatment where your heart can me shocked by electrodes to try and cause the heart to not fall out of pace, but is not guaranteed. I looked into it and the effects of it were something that I was unwilling to go through considering my heart only falls out of rhythm very far and in between.
After I got my heart condition figured out I decided to move onto my elevated liver enzymes. At this point I was dealing with weight loss still and constantly feeling like I literally swallowed a brick that was on fire that was stuck in my stomach. I was referred out to Shand's Hospital in Gainesville to go under yet another surgery to open up my Sphincter of Oddi. The procedure would consist of a small contraction being place at the neck of this area to help with the pancreatic flow. Needless to say I went through that surgery and came out with no results. I went through 4 more procedures when I was placed under anesthesia and came out with no results. At this point I was down to 85 pounds, no energy and still no results. I decided I would go through the last and final test there was. A liver biopsy. The Most painful experience of my life. In order to unsure that when they are taking the biopsy of the liver and don't mistakenly hit my lung I had to be half awake to hold my breath while they take the biopsy. Drained and ready to give up I finally got results. I was diagnosed with Primary Sclerosing Cholangitis (PSC) and Ulcerative Colitis.
PSC and Ulcerative Colitis are autoimmune diseases. They can't be contracted and doctors are not really sure what causes it. You're either born with it or your not. As of today my liver is at 50% working rate and will eventually need a liver transplant. I live a pretty normal life. I get tired a lot easier than people my age. My body will hurt if I push myself beyond what doctors recommend and I find myself in the hospital every few months from it. I do however refuse to let my conditions break me or prevent me from living a life of a 23 year old. I guess the reason for finally speaking about about my conditions is the fact that I'm not ashamed of it. If anything these past few years have made my into a stronger person and I'm proud of it. No matter what cards are thrown my way, I know I will be able to get through with a smile on my face because of this.
Thank you to everyone that was concerned while I was in the hospital the past few days. I really appreciate the thoughts and prayers. It definitely makes the time in there more enjoyable.
http://digestive.niddk.nih.gov/ddiseases/pubs/primarysclerosingcholangitis/
RIP Anita Ruth Oretsky August 2, 1923 - August 12, 2010 I love you Nanny!
