I am 27 years old and I was diagnosed with ideopathic gastroparesis and Postural Orthostatic Tachycardia Syndrome in 2016 when my health continued to decline after having my second child. Every single medication I was put on did not work even the slightest. I was vomiting every ounce of fluid and food that I tried to intake. I lost over 60lbs in just 3 months and was still continuing to drop. I spent the entire first 3 years of my son’s life bed bound and unable to enjoy those precious moments with my son and also my then 3yo daughter. The doctors were at a loss on how to further help me and felt the only option was to have a feeding tube placed. They searched and searched for a surgeon in the state of Arizona that could place a jejunal tube, but every surgeon they sent me to was to no avail. My husband and I ended up having to move our family into my mother’s house because I was no longer able to care for myself or my children. After living there for a few months we decided it would be best to move to California to seek better health care. Since moving to California it took quite a bit of time to get the ball rolling but I have just recently gotten into Stanford’s health care center, after 3 hospital admissions due to my gastroparesis becoming more and more severe. Upon my original diagnosis of a 70% digestion rate, I have now been told my stomach muscles are not contracting at all anymore. I am also now incapable of emptying my colon, yet another new addition to my health problems I have to endure. I have been placed on a liquid diet for the past 6 weeks and still ongoing while they continue to run tests to see what will be the best surgical option(s) to improve my health and quality of life. Right now they are looking at doing a G-POEM and then possibly a feeding tube if weight loss persists alongside the intolerance of the liquid diet. For patients like me HR3396 being passed means EVERYTHING! It gives us hope of a cure in the future, and even if not that, it provides the opportunity for further research to be conducted as to what medications and/or procedures will be most effective. My only hope is that you will take to heart the stories of other patients like myself that are fighting every day to beat this disease, and give us a fighting chance at survival by expanding the depths of research by approving this bill. Thank you kindly, Tatjana.
