My name is Luke Mosteller and I am twenty-five years old. I am writing this in the hope I can help anyone out who is going through his or her own struggle with CVS. When I was eighteen, my fight with CVS began and an eight-year battle ensued.
Growing up, I was the picture of perfect health which lasted through my freshman year of college. I was 6’3”, 205 lbs. During high school I played football, was an Eagle Scout, and a lifeguard. I went to college with the world at my feet, declaring a major of biological engineering. In March of 2011, I began feeling extremely nauseous at random times and began vomiting. One day the vomiting had lasted over twenty-four straight hours and started becoming mixed with blood, so I drove myself to the local ER. That was the first of many trips to the ER.
My CVS has always been accompanied by extreme abdominal pain and even after just a few months of hospitalizations, morphine was becoming increasingly ineffective and Dilaudid was introduced just to control my pain. I went to Medical University of South Carolina (MUSC) that summer and was diagnosed with a severe case of CVS and gastroparesis. My life careened downhill from there. I could have never predicted just how bad things would get over the next seven or eight years. In 2011, I had an explorative laparoscopy to no avail, and soon I had to have a port for venous access installed to avoid the complications with finding a vein during the severe dehydration of an attack. Within a year, I had become quite the GI expert; it seemed that I learned more about the biochemistry of anti-emetics and analgesics than most ER doctors that I ended up encountering. My primary care physician could direct admit me to my local hospital, but only during his office hours, so at night and on weekends if an attack hit, I would have to spend hours while sick in the ER waiting room. My primary care physician had a signed protocol on his letterhead instructing ER doctors to immediately access my port, hang D10/half normal saline wide open, and administer Dilaudid, Phenergan, and Ativan, alternating with Zofran and Benadryl.
The excruciating abdominal pain usually registered at a nine and along with the vomiting only subsided when the pain was controlled. I had several stints in ICU, multiple dystonic reaction-related partial seizures, and numerous Mallory-Weiss tears of my esophagus. I had never been able to find any of the usual CVS triggers; diet, anxiety, depression and medication changes seemed to have no direct preventative or causal effect. I had to eventually have 3 different ports placed and tried endoscopic duodenal Botox injections. I went to the places like the Mayo Clinic, Emory, MUSC, Jacksonville, and numerous on other fruitless journeys around the country. GI experts were at a loss because of the insane amounts of opiates I was requiring for pain, and pain experts couldn’t control the chaotic vomiting. In this eight-year span, I was hospitalized over three hundred times, could barely go a week without being readmitted, and in May 2017 my weight had dropped to 134 pounds, so I had to have a feeding tube put in my jejunum to help bypass the stomach. Things only grew more and more dire.
Through all this, my parents never gave up. Needless to say, I owe my life to them entirely. They were able to set up a trip to the Medical College of Wisconsin to see CVS expert Dr. Thangam Venkatesan. In October 2017, I was admitted to Froedtert Hospital under Dr. Venkatesan’s care. I was slowly tapered off the opiates and used ketamine to make the withdrawals somewhat more bearable. I threw up constantly for nearly four days straight but several days after that my system seemed to reset and I was able to begin keeping liquids down. Dr. Venkatesan also started me on a regimen of taking Emend on a daily basis, rather than just as needed. This was the magic I had needed for years. A month or so later I was at Johns Hopkins to finish up the psychological counseling I still needed. During that stay, the care team experimented with stopping the Emend. Lo and behold I did get sick again but for the first time in eight years, I threw up for less than twenty hours, handled the pain with only Tylenol, the nausea with Zofran ODT and Phenergan suppositories. I did receive intravenous fluids and 1mg Ativan. That day, November 14, 2017, was the last time I have thrown up. I began putting weight back on and the feeding tube was removed. During my stay at Johns Hopkins my other daily medications were stopped – Lyrica, Desipramine, Klonopin, Seroquel, Trazodone, Zanaflex, and Protonix. Now all I take is Emend and Cymbalta. Last week, I weighed 176 pounds, and I am the healthiest I may have ever felt. I am returning to the University of Georgia this fall to finish my degree and will graduate in December of 2018. Levels of mental clarity and creativity have returned that I had completely forgotten about.
