Tuesday, May 26, 2015

Choosing [to remember]

I'm certain it's something I'll never forget. September 2009. I was less than a month into my senior year of high school and it was an ordinary school night. Homework, studying, dinner - the usual things. My parents had a meeting with David's teacher that night so we stayed in the back.

Thirty minutes after I finished dinner, I found myself doubled over in pain. It felt as if someone was repeatedly stabbing me with a knife, right under my right side rib cage. "Deep breaths," I thought. "Must've eaten too much - maybe the food was bad," I convinced myself. After about 20 minutes, the pain subsided. It was as if nothing had ever happened. Over the course of the next couple of months, these episodes would increase in frequency, intensity and duration. In December, my mom practically dragged me to the doctor's office. My mom had previous gallbladder issues and had a hunch I was experiencing the same thing.
This picture was taken during my senior year

As I sat in the pediatrician's office, the nurse asked me a series of questions about my health history. Each answer was "no" and I kept thinking "I've never had any health problems. I'm totally healthy." After the doctor's examination, I was referred to the GI clinic within Womack Army Medical Center. Several months of testing ensued and sure enough, "mother knows best!" I had no gallstones, but my ejection fraction (%) was 19%. It's supposed to be at least 65%. On April 6th, 2010 (my senior spring break), I had my gallbladder removed.

In the weeks that followed that procedure, I learned to adjust to a new way of "normal." If you've ever had your gallbladder removed, you totally understand. If you haven't, count your blessings. I went on my senior trip, graduated, went on a missions trip and was excited to start a new chapter in college.

Remember the little line where I mentioned I went on a missions trip? It was my first missions trip and I was elated. A group from my church travelled to Guatemala in July 2010. I had an absolute blast and burdened for people on the trip. It couldn't be all fun and games though. Given the fact I had just had GI surgery, I developed Traveler's Sickness. Due to the sickness, I lost a couple pounds. No big deal, right? Wrong.



Two weeks after returning from my trip, that intense stabbing pain returned. However, this time violent vomiting tagged along. At first, it was every few days. As time passed, the frequency increased to the point that I could no longer hold ANY solid food. No doctor could figure out the problem and I went through months of testing. It was even suggested to me that I should quit fooling people and admit I had a (self-induced) problem. I drank so many milkshakes just to keep my head above water. I was miserable and losing weight rapidly.

After several episodes of vomiting bile (and stopping several times on my way home from UNCP every day), I called my mom and told her to meet me at the ER. It was the first time I ever called into work. While that visit didn't result in anything extremely substantial, that doctor was able to prescribe me Zofran to control the vomiting. I'd live on that medication for the next 6 months.

In December 2010, I sat in a GI's office and he told me they had done every test they could and that nothing was physiologically wrong with me. My mom looked at him and said "You haven't done a CT scan." After some coaxing from my mom, he agreed to order a CT with contrast. Three days after that CT scan, I received a phone call from the doctor himself. From his voice, you could tell he was in disbelief. It was then that I received an official diagnosis. "Candace, based on the findings of your CT scan, you are being diagnosed with Superior Mesenteric Artery Syndrome." He explained to me that surgery was the last option and that he wanted to try and see if conventional weight gain would work.
Long story short, it didn't.

Because Womack is not a specialty hospital, they referred me out. Over the next 5 months, I would have 3 doctors "argue" over my diagnosis and who was going to see me. Finally, Dr. Theodore Pappas at Duke agreed to do an exploratory surgery. No one really knew what he was going to find or what the outcome would be, but by this point I was desperate. By this point, I was 104 pounds (I'm 5'7") and I couldn't bear to vomit another time.

On May 27, 2011, I went under the knife. That surgery forever changed my life as I said "good-bye" to a foot of my small intestine, including most of my duodenum. Because the risk of infection was so high,  the intestine was not removed, but was bypassed and is no longer functional. (You can see on the diagram below). As I was waiting in recovery, my doctor came to me and said "I'm so sorry." I asked him why he was sorry and he said "Because we waited so long. Two more weeks and you would've suffered an intestinal rupture. It would've killed you."



After five days at Duke University Medical Center, I went home. And then the real fun began. Everyone talks about the physiological aspects of a condition. No one talks about everything else. For the next 18 months, I was mostly terrified of food. I was scared that it would put me back where I was. I was scared of the unknown. So, I ate very little. I managed to get by with maintaining my weight and gaining a little bit back. I was still in an intense amount of pain, but because there was nothing "wrong" with me, my doctors kind of washed their hands of me. I had wonderful family and social support that never faltered. They were my biggest fans.

In February 2013, I was given some gentle (sometimes it was a little less than gentle :-)) prodding by my family and some good friends to make a positive change in my diet and exercise habits and to see what happened.  It didn't happen immediately, but after a few months, I started to notice a change.

In August 2013, I moved to Charlotte, NC to pursue my Master's Degree at UNC Charlotte. During this time, I made the choice to focus my efforts on getting healthy. Over the course of the two years I lived in Charlotte, I gained 15 pounds and a new confidence. The tough love I received in February 2013 was one of the biggest turning points in my life. Those who loved me enough to tell me what I didn't want to hear and ask me what I was eating every 3 hours, thank you! I am forever grateful.



The long term effects of a duodenojejunostomy (the procedure I had) are unknown. Life is full of uncertainties and that's one of mine. What I do know, however, is who holds my tomorrow. He has never failed me and I don't anticipate him starting now. So for now, I'm redeeming the time and enjoying the ride. I've got goals and dreams - there's no time for fear to slow me down.

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