Marissa Little: Nutcracker Syndrome

I am now 22 years old. I have been intermittently bed bound since 2014. My journey with these illnesses began with a bout of pancreatitis at the age of 13. I began to have several more episodes and was misdiagnose with biliary dyskinesia, delaying the correct treatments. Much of my early conditions have been a urine retention, fowlers syndrome (unable to feel bladder), ovarian cysts, uncontrollable nausea and vomiting, followed by flank & myofascial pain. Later in 2014, I was diagnosed with gastritis and cystic fibrosis (affecting my Gastrointestinal system i.e. pancreas and liver). In 2016, I was diagnosed with inflammatory liver disease, elevated liver enzymes, epigastric abdominal pain, Small Intestinal Bacterial Overgrowth (SIBO), C Difficile, and chronic severe pain of the right upper quadrant. In 2018, I was diagnosed with cystic fibrosis transmembrane conductance regulator (CTFR), along with hereditary pancreatitis from Prss1 and Spink 1 gene mutation, activity intolerance, postural orthostatic tachycardia syndrome (POTS), chronic abdominal pain and mast cell activation syndrome (MCAS). I was also became septic from an infection in my PICC line. In 2019, I underwent surgery to correct my median arcuate ligament syndrome (MALS). MALS happens where the median arcuate ligament syndrome presses too tightly on the celiac artery (a branch of the aorta that delivers blood to the stomach, liver, and other vital organs) and the nerves in the area (celiac plexus). This condition was so severe I was left bed bound. After surgery, I still had a very long road of recovery learning to do everything all over again. In 2020, I was diagnosed with Nutcracker Syndrome. I have been told I am high risk for kidney failure due to all the Urinary Tract Infections I’ve had. Nutcracker is a genetic and rare compression of the left renal vein causing blood to not flow correctly from the kidney. Instead, blood flows backwards into other veins causing them to swell. On May 5, 2021, I had a auto kidney transplant. Which means my left compressed kidney was removed and repositioned to below my right kidney. My appendix was removed to make ensure there was enough room. So far I have been on the hospital for 19 days due to complications.These conditions continue to add up. Hardly any have been resolved nor are they expected to be. For the last few years, I have not been able to sit longer than 20 seconds without having pseudo seizures and blacking out. I have not been able to tolerate standing, walking, eating, using my wheelchair, bathing or any function without assistance that can’t be completed in a right side laying fetal position. Getting into a car can’t be accomplished without my parents’ assistance. I currently have 16 different medications I take around the clock. I have been in and out of the hospital since 2014 some years spending several days to weeks in-patient at a time. My teenage and young adult years have been spent in countless doctor’s offices, trying numerous different types of medications that have failed, and several weeks/years on Hospice and Home Health. My nutrition comes currently thru a my PICV line via TPN. I have been in a steady declining state since I was 13. I have been close to death several times. Most of my illnesses are rare and unique, I have been told this may continue for the rest of my life. I desperately need any assistance to continue so I may pay for my medications and supplies. All prayers, good vibes, positive energy, good juju, and well wishes are much appreciated.

Thank you,

Marissa Little