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Elliot Barnes' Fundraiser:

Please help Melissa Johnson fight pancreatitis

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May 30, 2017

The doctors were able to calm her GI flareup and get her moving enough to a point that she could safely be at home. The doctors wanted to send  See more

BENEFITING:

Elliot Barnes

THE STORY:

Life was normal for an extremely active mother of two, a devoted wife, and loving friend. Melissa Johnson, a college basketball coach, and highly motivated individual, has had a turbulent road over the last nineteen months. This unforeseen journey began back in March 2014 with what was thought to be a simple robotic hysterectomy that would see Melissa back at work in a few weeks. Recovery from this surgery was going well until an unexpected curve ball was thrown her way. An emergency trip to the hospital found Melissa having severe abdominal pain and a blood clot in her lung. Upon further investigation the pain was found to be severe acute pancreatitis. After spending a week in the hospital to recover, Melissa and Nick thought their roadblock to recovery was removed and life would be restored to normal. Little did they know that the next twelve months would find Melissa suffering from over a dozen bouts of pancreatitis (now chronic) and much more. Three trips to the ICU, multiple endoscopic procedures, and a life threatening intestinal obstruction would cause Melissa to be in the hospital for over 200 days, turning her young family’s lives upside down. Because of the gastric illnesses, Melissa was rendered unable to eat without a feeding tube and had to develop a new sense of dietary normalcy. Void of the simple comfort of eating food, and enduring multiple days laying in a hospital bed, Melissa has battled emotional distress and the frustration of being away from a husband and two young children that she loves so dearly. Altogether, Melissa has lost over 40 pounds, dropping to a staggering 104 pounds on a 5'9" frame! Desperate for help and an answer to what was causing all of this, Melissa and Nick traveled ten hours away from their Indiana home to the Mayo Clinic in Rochester, Minnesota, for three weeks of medical care and consultation. Experts there believed the source of her continuous pancreatic attacks was a type of genetic pancreatitis, but unfortunately there was no treatment that could be offered. They were sent home to endure six more months of attacks, with the number of days Melissa spent in the hospital climbing to over 300. Finally in March 2015, an exact year to the date of the first bout of pancreatitis, doctors at the University of Cincinnati were able to offer help to end the pancreatic pain. A rare surgery was performed called TPIA (Total Pancreatectomy with Islet Autotransplantation), where Melissa’s pancreas was completely removed and the cells from the organ transplanted into her liver. During surgery other organs were removed and a new digestive tract was created, and the next four weeks found Melissa in the hospital learning how to digest again and battle expected diabetes that results from the surgery. After losing all or part of thirteen organs and being relieved of the debilitating pain that had seen this young mom live in the hospital for the past year, Melissa was able to return home and the next ten weeks saw her slowly readjust to a new normalcy. Just when all seemed to finally be on the path to recovery, doctors found the pituitary and adrenal glands had shut down in Melissa’s body and she spent most of this summer in and out of the hospital battling severe vomiting, abdominal pain, and problems controlling her blood sugars. Insertion of a port to allow better access to IV medicines turned to be nearly lethal, as an infection spread from Melissa’s heart throughout her fragile body. After five seizures, increasing brain swelling, and systems of Melissa’s body shutting down, doctors diagnosed the condition as P.R.E.S. (Posterior Reversible Encephalopathy Syndrome) and flew Melissa by lifeline helicopter to Methodist Hospital in Indianapolis, which is the top neuro hospital in the state. Over a week was spent in neurocritical care, where doctors battled Melissa’s brain swelling and a subsequent leak in her spinal cord fluid, which left an already bruised brain now sagging and under increased pressure. Once stabilized, Melissa was moved to neurointensive care, where she remained for over two months (which brings her number of total days in the hospital since March of 2014 to over 500). Consciousness was regained, with doctors and therapists helping Melissa to adjust to the changes in her vision, hearing, memory, and motor function. Doctors worked to patch the leak in her spinal cord by opening up her back and were hopeful that her damaged brain and body would regain all of its function. After only being home for a little over a week following her release from Methodist Hospital, two days before Christmas Melissa was rushed by ambulance to her local hospital because of multiple seizures and non-stop vomiting. Her local hospital tried to control both of these, but it was decided she needed to be transferred to the University of Cincinnatibto be cared for by the doctor that performed her pancreas surgery. Over three months was spent at this hospital, multiple abdominal surgeries were performed, and a team of doctors tried to restart Melissa's digestive system that her brain damage had brought to a complete stop. Currently she is being fed through a feeding tube inserted into her small intestine and has a stomach tube as well to help prevent the committing. Doctors are unsure how long it will take for her systems to regain their function. Because of the uncertainty of the timetable for her recovery, she is currently on extended medical leave from a job that she loves so dearly, coaching women’s basketball at Earlham College. The surmounting medical bills from multiple doctor visits and hospital stays, trips by ambulance and helicopter to various hospitals, as well as insurance not covering her nightly tube feedings, has created financial hardships for her young family. We are asking for prayers for Melissa and if able, please take a moment to consider helping financially to ease the struggles that Melissa, Nick and their two children are enduring at this time. We hope with help from their friends and family we can make this road a little easier for them to travel.

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Elliot is working on selecting a charity so you can support Please help Melissa Johnson fight pancreatitis.