Personal stories of GP patients
I have been fighting Gastroparesis for over 12 years. You wake up hoping you will have a good day be able to eat . Hoping I have energy. I try to eat then I have major blood sugar problem being 35! And trying not to throw up . Or hoping I will stop going to the bathroom 10 to 15 times . This is everyday
I can not work because there is no way
I can just lay down everyday and hope I don’t throw up or pass out from too low of blood sugar and can’t stay out of the bathroom when I should be working
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.
My husband suffers from gastroparesis. Please see his Facebook page: Jeff Heimbach’s Gastroparesis Journey. In 2008, Jeff was a State Trooper in pursuit of a stolen vehicle with a kidnapping. He was cut off by a car and to avoid hitting others, he crashed his troop car into a few trees off Route 280 in Roseland. This caused a diaphragmatic hernia and pulled his stomach off the vagus nerve. There is no cure for this evil, chronic, debilitating illness. We appreciate any and all research put forth into helping those with GP and other motility disorders.
I was first diagnosed with gastroparesis in 2016, but had be subjected to over twenty-five surgeries pre-diagnosis. Since my diagnosis I have lost my ability to be tube fed and I am IV dependent on TPN for daily nutrition. As of today we have no real cures and barely any symptom control. Please, support H. R. 3396 to help those of us with gastroparesis live a full life. I am a fulltime nursing student and hope to use the remainder of my life on Earth to assist others who are struggling with this life altering disease. Thank you for your time and God Bless you and your efforts to help us find the cure that could potentially save thousands of lives.
For the last 6 years my son has suffered terribly with gastroparesis. He began with it at 6 years old and is now 12. He is no longer able to attend traditional school and spends most days in pain. Because of the lack of funding, there are very few medications that can be used and there is even less research that has been done to help children. They are basically told to just suffer. It is absolutely the worse thing in the world to be told there is not much that can be done for your child. I look at cancer funding for children and I wonder why my child does not matter as much as those children. All children matter. I understand budgets, I understand the number of people with the disease, I get it…but until someone like you stands up for someone like us…my child will continue to suffer. We understand that a vote won’t even necessarily help our son, but if we can be brave, and stand together then we can at least say, that today’s suffering was not in vain, because tomorrow will be a better day for those that come behind us. Please join me in standing strong and please co-sponsor HR 3396. There are a lot of things we can stand for. I would be honored if you would stand with me and say that you want the suffering of children and adults with gastroparesis to end. Thank you for your consideration. I greatly appreciate your time and any thought that is given to this. I decided to share a picture of our family when things are good. We try to focus on those days. My son is the youngest one and he is tough as nails with the wisdom of a man much older. Thanks again for your time.