Struggling to Breathe
Carter Cartrette couldn’t breathe. His chest was like an iron band, suffocating him. When he tried to draw a breath, his diaphragm would barely move. After suffering pneumonia in 2016, Carter was also experiencing severe pain radiating down his left shoulder and arm. He knew something was terribly wrong.
His pulmonologist diagnosed Parsonage-Turner Syndrome, a rare nerve disorder that was progressively paralyzing his diaphragm. His doctor told him that the left side of his diaphragm was 50% blocked. He recommended that Carter wait—sometimes diaphragm function improved over time.
By the fall of 2017, Carter was on oxygen. He still couldn’t breathe. And the pain was back, this time on his right shoulder, arm and in his neck. The paralysis was spreading to both sides of his diaphragm. The tightness in his chest was terrifying.
Carter was hospitalized in January 2018. Because he could not breathe lying down, doctors could not do an MRI. Steroids failed to control the inflammation. After trying other treatments, the doctors were running out of options.
RN Case Manager Intervenes
“Carter was on a BiPap machine,” his wife Debra said. “I was afraid he would quit breathing at night.” The BiPap machine, just one step down from a ventilator, was loud and kept Debra awake at night. They were emotionally distraught with the fear that every breath might be his last.
When MedCost Case Manager Lindsay Spainhour, RN, BSN, contacted the Cartrettes, Debra said that she didn’t realize how valuable her expert support and guidance would be.
“Lindsay called not long after he came home from the hospital,” said Debra. “I had no idea how many questions we would have. There were a lot of things I didn’t know, and I’m in health care.”
Lindsay immediately began advocating for the Cartrettes, getting answers to Debra’s medical questions and together investigating treatment options. Debra found Dr. Matthew Kaufman, an out-of-network surgeon in New Jersey who specialized in Carter’s specific nerve damage. Lindsay worked tirelessly to obtain special approvals for the July 2018 surgery.
Even the trip north presented major challenges. Carter had trouble breathing when sitting, so Lindsay arranged for portable oxygen on the long trip to New Jersey.
The Cartrettes within hours of arrival called Lindsay, saying that an administrative issue with the New Jersey hospital was potentially threatening to postpone the surgery. Lindsay reached out to her MedCost manager, Dana Best, who contacted multiple departments at MedCost to resolve the complicated issue.
“We spent hours addressing this,” said Dana. “We were determined to expedite this situation as soon as possible.” MedCost care management, claims and legal departments went to great lengths so that the Cartrettes, waiting miles from home with their adult children, could proceed with this life-saving surgery.
Even after the successful operation, Lindsay again interceded to arrange specialized therapy, coordinating a local therapist with one in New Jersey.
Carter is now wearing a pacer that stimulates his diaphragm. The therapy will help strengthen and retrain his respiratory system.
Through it all, Debra says their Case Manager made all the difference.
“So many people have no help in the health care profession. I’ve never had anyone respond that quickly and do such an exceptional job. I’m forever grateful for how you all have supported us.”
*The Cartrettes gave MedCost permission to share their story to help others realize the benefits of the Complex Case Management program. MedCost Complex Case Management is a program where registered nurses who are also certified case managers work with individuals who have experienced a life-changing illness or injury. The goal of the program is to ensure the best use of available health plan resources while enhancing quality of life.