If I would have been told thirteen years ago that my life today would be as rewarding as it has turned out to be, I would have had a very puzzled look on my face. You see, thirteen years ago, I nearly died from a common medical condition, although my condition was a bit outside the norm. To see me today, no one would think I ever had anything wrong with me. People who know me or have met me and know my story are typically mesmerized by what I have been able to overcome. At the lowest point of my illness, I was told by my employers, “I would regret what I was doing to myself” and “I needed to get my head on my shoulders.” Later, these same employers released me from my employment when I took doctor-ordered medical leave. It was that kind of “support” I dealt with during my illness that has made me the very independent, determined and strong-willed woman I am. In retrospect, I truly don’t think I ever have met anyone who could have endured what I went through physically and emotionally and end up where I am today. I am not saying that to pat myself on the back, it is what I believe because no one could “make up” the medical condition I went through or the cruelty I faced during years in life that were influential in shaping me into an adult.
When I was a month old, my parents took me to my Pediatrician because I suffered from severe constipation. The Pediatrician didn’t have an explanation as to what was causing it, so my parents never thought much about it. They figured if the doctors they took me to didn’t have a reason for my problem or look into the cause of the constipation, it was just how my digestion worked. From Pediatrics until I graduated from College, I went to thirteen doctors, the main concern being that during my Sophomore year of high school, I lost sixty pounds, without any explanation. Unbeknownst to me during this time, I was labeled by my teachers and school staff as being “one to watch” because they thought I had an eating disorder due to my weight loss. Somehow, from my Sophomore year until College, I bridged over; then while in College, I lost another thirty pounds which I really didn’t have to lose. All the doctors at the time could come up with was, “Anorexia Nervosa,” and that it was “all in my head.” One of the doctors I went to during this time actually told me to eat potato chips and chicken skin at breakfast every day to gain weight; however, after knowing what my underlying condition was, eating fatty foods like those would have made the condition I had worse and probably would have killed me. Luckily, my parents didn’t buy into the thirteen doctors assumptions and we ultimately paid all of my medical expenses out of pocket so my insurance wasn’t tapped with a label that was unfounded.
As my condition persisted and became deathly worse, my mother was determined to find help; this was after being tested for Cancer, having a Bone Marrow Biopsy, Barium X-Ray along with numerous blood & allergy tests. One night in 2005, my mother, who is computer illiterate, stayed up late unable to sleep feeling I was dying, she “Googled” the symptoms I was having at the time and ran across the website of William P. Smedley, M.D., F.A.C.S., a General Surgeon in Wilkes Barre, PA. He had discovered that sometimes there is a physical cause for what most doctors diagnose as “Anorexia Nervosa.” Dr. Smedley had a list of symptoms correlating gallbladder disease with symptoms of “Anorexia Nervosa” symptoms and these matched every one of my symptoms. The next morning, my mother contacted Dr. Smedley who told her we should try to get my gallbladder tested in Springfield instead of making the trip to Pennsylvania to have him test it. As luck would have it, we were able to schedule with a General Surgeon here, to see if he would run the proper test to see if my gallbladder might be the reason for my weight loss. However, the outcome of the appointment came as quite a wake up call. When I got into the exam room, the surgeon said to my face, “How did you get my name, if you were sixty five or older I would order the proper testing but because of your age, I choose not to.” I was literally in shock and all I remember is my jaw dropping and walking out of the room thinking my next stop was the mortuary!
At this point, my parents loaded me in the car and drove seventeen hours one way to Pennsylvania to meet Dr. Smedley who met us in the first floor of his office building. He could see I was dying and told us I didn’t have much time, my skin was already green in color. He immediately scheduled me for a CCK (Cholecystokinin) Challenge Test which is used to diagnose gallbladder disease; the test ultimately shows if the gallbladder is functioning optimally. However, Smedley had a different slant on the testing procedure; he devised the test sitting up rather than the way it is normally done which is lying down. The rational is, being erect for the test is how humans typically eat, because humans don’t eat lying down. I never got through the entire CCK test he scheduled, instead, my results showed my gallbladder was not squeezing down normally. I was immediately scheduled for laparoscopic surgery performed by Smedley who discovered my gallbladder was never attached to my liver, I had a kink in the bile duct and an artery that had grown into the bile duct. He removed my gallbladder, repaired the artery and determined everything he found were actually birth defects, the final diagnosis being, “Biliary Dyskinesia.” Dr. Smedley determined my gallbladder was basically flopping around and the only time it was “in place” was when I would lay down (which the normal CCK test “laying down” would have shown it was technically in place) but in my case, when I would sit up, it would flop over which resulted in the weightless and malabsorption. No other doctor prior to him ever looked for or considered anything internally might be causing my weight loss.
Following my diagnosis and surgery, I was able to educate more individuals with symptoms similar to mine. Smedley asked me to publish a book about my ordeal as I was his 61st patient and his worst case to date. My story lead him to help well over 100 patients with diseased gallbladders who had been misdiagnosed as having eating disorders. The title of my book is, 'Anorexia Misdiagnosed', it is not the most glamorous cover or subject but it is definitely educational and was never intended to make money or to become a best seller (the last thing I needed at the time was any more attention to myself), but I knew I could help others with my story. The story has touched millions of lives, locally, nationally and internationally even all the way to Iceland. I still get calls, emails and questions weekly from desperate individuals and parents looking for answers to similar symptoms. Some of these are colleagues I work with who have discovered they have symptoms matching gallbladder disease. Interestingly enough, after my surgery we would discover that my mother, grandmother, uncle and numerous other family members had dysfunctional gallbladders, however, none of them had the weight loss like I did as it is a genetic condition and can have either weight gain or weight loss.
One thing I have learned through all of this is it is true that anyone can do anything they put their mind to, despite setbacks they face in life. I wouldn’t have imagined that a simple gallbladder would cause me to lose so many friends, employers, co-workers, acquaintances and even family members thinking I had an eating disorder. These are the ones that whispered behind my back, walked out of my life, released me from my job, called me Anorexic to my face, stared, glared and laughed at my skeletal body and gave me unsolicited advice to eat a cheeseburger, milkshake or piece of pie at a time when I had no idea what was going on with me. Every day since my surgery, I consciously thank these individuals because their ignorance over the years has helped me become a better person and see the kind of person I never want to become in life. Those that stayed in my life during my illness were few in number, I could have counted them on two hands during that time, but the number of people in my life today after all of this has grown exponentially and will continue to do so as my story helps more and more individuals. It has taken quite some time to realize it at my age, but I have accomplished something that most people will never have the opportunity to in life and that is, saving individuals lives based on the medical condition I had at birth. Everything that happened to me was beyond my control and it happened for a reason. Despite my life not going exactly as I had envisioned it, I wouldn’t change what happened to me because I have been given the opportunity to see life and death literally and it has made me a very humble person.
If there was one thing I would ever want to be remembered for, it would be for my perseverance and determination to share my story with everyone I can; and hopefully, sharing my story with 7 Billion Ones will be a catalyst to help touch more and more lives.