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“Thanks to my G-JET®, I am a 3rd degree black belt, a 9-time ATA Martial Arts Taekwondo World Champion, trophy fisherman, blogger, and skier.”
– Meghan, G-JET® Customer
After an adverse effect from a vaccine on August 24, 2012, my world was rocked so violently, I didn’t recognize it anymore. I would spend the next 9 years and counting searching for “the” right diagnosis. My search nearly claimed my life numerous times and the pain I feel everywhere is unrelenting.
Eventually, I was diagnosed with a one-in-a-million neuro autoimmune disease called Stiff Person Syndrome (SPS). I have a pediatric onset case, which means the disease gets aggressive very fast. SPS is a rare condition that causes severe muscle spasms and muscular rigidity, broken bones, dislocations of joints, frequent falls, contractures of the limbs rendering me unable to walk, respiratory spasms, and spasms throughout my GI tract. I never get a break from these spasms, not even during sleep or general anesthesia! In my case, not only do I use my tube for nutrition, but I also administer all my medications through my J extension. My tube has saved my life more times than I can count as my family can push rescue drugs through the tube when I am in spasm. Most people get SPS between 30-50 years of age. I got it at 16 and like most people, it took 7 years to diagnose me.
My journey with a feeding tube began in 2016 with a nasal-jejunal (NJ) tube, when I was diagnosed as failure to thrive due to gastroparesis. As the diagnoses kept piling on, I found I needed a new NJ tube monthly. It was in the middle of November 2018 during a 32 day ICU hospital stay in a Pittsburgh, PA hospital awaiting a medi-evac to Johns Hopkins in Baltimore, Maryland when a team of GI doctors suggested I switch to a surgical tube. When I got to Hopkins, the GI team there told me the exact same thing about a surgical tube. I dismissed them again; but not for long as they placed a 22Fr NG tube in me. I personally never found “nose hose” placements too bad, but having what can only be described as a “fire hose” in my nose was the last straw. I rolled over in my hospital bed and told my mom I wanted a GJ tube. It was placed emergently 2 days later.
After consulting my feeding tube friends and doing my research, I decided that the AMT G-JET® would be the best fit for me and my lifestyle. It was flexible and so comfortable I could forget I even had a feeding tube! The anti-kink technology was important to me as well because I didn’t want my tube to coil back up in my stomach. Bonus points for glowing in the dark too!
I have had other brands of GJ tubes placed and they were so stiff that they caused me significant pain. I barely made it the 24 hours it took for the doctors to order the right tube and have it sent from AMT overnight.
Thanks to my G-JET®, I am a 3rd degree black belt, a 9-time ATA Martial Arts Taekwondo World Champion, trophy fisherman, blogger, and skier. I love traveling all over the country to compete! I graduated from the University of Pittsburgh with a degree in Communication, health sciences concentration. I have just been accepted into Winthrop University to earn my Masters of Social Work. I also started the 2nd non-profit organization in the United States, Meg’s Miracles, to raise awareness and money for Stiff Person Syndrome. I might not be the expert on the disease, but I want to help fund the experts’ research to expedite better treatment options and hopefully, a cure too! I’ll never stop fighting for my passion; helping others with chronic illnesses and disabilities!
