In Pain We Trust

“In Pain We Trust” Synopsis By: Kevin Whiting

Listening literally saved my life. For a year and a half, I told doctors over and over again that the pain in my stomach was real. And not just everyday paper-cut pain, I’m talking extreme, intense pain.

I couldn’t function, go to school or even eat. And instead of listening, the doctors completely ignored me, told me I was depressed and bulimic, and threw 10 prescriptions for anxiety and depression at me. Obviously I wasn’t depressed, so the anti-depressants made me depressed, and at times even suicidal. I was knocking at death’s door for nearly 18 months.

Luckily, I had a few good listeners on my side, including my mom, my family and friends, and our family doctors. My mom listened and wasn’t afraid to speak up for me when doctors ignored what I had to say. My family and friends were listeners. They heard my pain and gave me hope when times got really tough. And, fortunately there were also doctors who listened, asked questions, and ran the necessary tests to figure out what was wrong.

I had a surgery that fixed the problem, and I am now recovering. I have gained 40 pounds and am on my way to being a normal teen.

Source: Interview from KSL Television


Life With Burnie

It’s been an ‘E’ ticket ride with Kevin over the last few years….a roller coaster with steep ups and crashing downs, twists and turns and now a screaming decent through the last tunnel out into the sunshine. If you’ve not ridden the entire ride with us, welcome to the end run. For three years we have been working furiously to figure out and solve on Kevin’s rapid weight loss and severe abdominal pain that Kevin named “Burnie”.

Over time Kevin might put on two or three pounds, then he would have another episode where food would not stay down and pain would become unbearable. Sometimes his intense level of pain would reduce to functional pain so that he could return to school for a few days, but he was so weak from the twenty plus pound weight loss from his already thin frame that he didn’t have much strength to carry on.

With patience and support of his siblings (Phillip and Katie) and friends (and of course his parents, ha!), the belief of his primary doctors and a determined surgeon, a definitive diagnosis that, though scary, had a surgical cure. Kevin was born with a rare intestinal compression SMA Syndrome) that manifests itself with adolesence in what the doctors refer to as “cascading complications.” Food sion. Throughout all of this, keeping food down was difficult for Kevin. And so we returned again to the doctors, the tests, the hospital. And yet no answers were forthcoming, and Kevin’s suffering, pain and weight loss continued.

Kevin hoped to get strong to return to the soccer field. He had planned to play for his high school team in the spring. Instead, Kevin learned the power of hope, the importance of strength and the necessity of adaptability. Soccer has not yet been an option for Kevin, though he an now eat, and is working with a neurologist to quell the resulting pain in his abdomen. Kevin’s social life is demanding, his smile is bright and the future is his to grasp. Dad Jeff, brother Phillip, sister Katie and I all look forward to seeing what the next chapter holds for this remarkably resilient young man.We found a gifted surgeon who rerouted Kevin’s intestines away from the blockage and away from his arteries and reconnected them so that food can pass to the rest of Kevin’s system. After months of living on a PICC line for sole source nutrition, Kevin, for possibly the first time in his life, had an appetite.

 

 

 

 

 

 

 

 

 

 

 

Buy “In Pain We  Trust” on Amazon

 

 

Discussion

  1. Stephanie Fisher  December 12, 2011

    Thank you very much for bringing awarness to this disease and for sharing your story!

    (reply)