Get Mazzy To Mayo

Hi my name is Mazzy, like Jazzy but with an M. I have dealt with medical issues for the vast majority of my life. I began having symptoms of gastroparesis in 2018 and during my GI work up I was diagnosed with Crohn's disease in September 2019 which threw us off the trail. The final piece of my work up was supposed to be a gastric emptying study which is the standard test to determine whether or not a patient has gastroparesis. Gastroparesis is a disease where the stomach succumbs to a paralysis and doesn't allow food, water, medications, etc to pass into the small instestine to get digested and absorbed. Covid hit and that mixed with insurance issues forced me to go 9 months with no diagnosis. I was admitted for the first time on July 13th, 2020 where I was officially diagnosed with gastroparesis and trialed an NG tube that was unsuccessful. An NG tube is a type of feeding tube that goes into the patients nose and ends in their stomach to feed them, I was sent home with a NJ tube 18 days later. An NJ tube goes in the patients nose, down their throat and passes through the stomach but ends in the small intestine to feed them. Since then, I have been admitted an additional 7 times for dehydration or malnutrition. I had a GJ tube placed on March 23rd and have been dealing with feeding intolerance symptoms since October. A GJ tube is a type of surgical feeding tube that is place into the patients stomach to allow them to vent or drain any air or stomach contents out of their stomach to prevent vomiting; it has an extension the goes through the stomach and into the small intestine to feed them there. I have reached a point where I cannot get enough nutrition or hydration from the tube because it is too much volume for my body to handle. I was started on TPN on June 11th. TPN is a form of nutrition that goes through a long term IV in my upper arm and into my heart where it is circulated to the rest of my body to nourish someone with impaired digestive function. TPN can have very serious side effects, one being liver damage. This is a very serious risk for me because I had a liver transplant when I was 22 months old due to a disease called Autoimmune Hepatitis. Another serious risk is a blood stream infection from the long term IV. I'm on immunosuppressive medication so that I can keep my liver but it weakens my body's ability of fight infections and sepsis would be life threatening. I have an initial appointment to get a full motility work up at Mayo clinic in Rochester Minnesota on September 7th and our insurance company will not cover any of the expenses. We have to pre-deposit $5000 and that doesn't cover travel or lodging expenses. The work up will be done to explore the functionality of my entire GI tract because we know my stomach doesn't work and we have been told my colon is impaired but we haven't be able to get accurate testing of my small intestine. We are hoping we will get further testing, possible new diagnoses, the opinion of world renowned motility specialists, and a treatment plan going forward that will allow me to come off the TPN and maybe eating without severe symptoms again. Any and all donations are greatly appreciated. Thank you!

If you would like to follow my journey closer or get more information, check out my instagram @chronicallymaz :)