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Thursday, March 09, 2017, 7:20 AM 4:34 PM

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Coordinated Care Helps Patient Beat the Odds, Push His Limits

Gary Nelson doesn't let alpha-1 antitrypsin deficiency and bronchiectasis stop himAs a child growing up in Wisconsin, Gary Nelson had severe pneumonia so often that doctors told his parents their son would probably not live past the age of 20. Nelson responded to their prognosis by adopting the philosophy of “Live hard, die young.”

Going on to run 10k races and climb fourteeners, he has indeed lived hard — but Nelson has eluded the dire consequence of his motto through comprehensive, coordinated care at National Jewish Health and Saint Joseph Hospital.

“It’s a complementary force,” Nelson said of the clinical collaboration between the two hospitals. “The doctors at National Jewish Health and Saint Joe’s work in concert with each other. They work together and collaborate and come up with a solution."

Nelson had been waiting for a solution to his symptoms for most of his life. He had long known he suffered from bronchiectasis, a condition in which the airways in the lungs are permanently and abnormally widened and inflamed, causing patients to cough, experience shortness of breath and produce sputum, a mixture of saliva and mucus.

In 2011, after years of treating his flare-ups with “tune-up” visits to a hospital near his home in Colorado Springs, Nelson and his physicians hit a wall. “I think I’d been to see every pulmonologist,” he said. Nelson was then diagnosed with alpha-1 antitrypsin deficiency.

A key protein in the blood that is produced in liver cells, alpha-1 can affect the lungs and liver when it is deficient. When alpha-1 deficiency impacts the lungs, it can cause chronic obstructive pulmonary disease (COPD), emphysema and a host of pulmonary difficulties. One of Nelson's doctors suggested he go to National Jewish Health for treatment of the rare genetic disorder.


Starting from Scratch

At National Jewish Health, he saw a team of doctors, including Gwen Huitt, MD. Though Nelson had been seeing physicians his entire life, this time was different. “She started from scratch,” he said. “She broke the routine. The doctors at National Jewish Health delve deeper and take it to the next level.”

Dr. Huitt ordered a comprehensive series of tests, identifying conditions that Nelson did not even know he had and which are now being treated.

Nelson’s team of physicians also includes Robert Sandhaus, MD, a specialist in alpha-1 deficiency, or alpha 1 as it is often called. “He’s the father of alpha-1 if you ask me,” said Nelson. It is not just Dr. Sandhaus’ nationally recognized clinical expertise that he appreciates. “He doesn’t think of you as just a number,” Nelson said. “He sees me and says, ‘Hey, Gary.’ He knows me by first name.”

Nelson attends a picnic that Dr. Sandhaus hosts every year in conjunction with National Alpha-1 Education Day. Networking at the annual event has helped him learn more about his condition and form friendships with people who understand what it is like to live with alpha-1.


‘Doing the Work of Angels’

Nelson feels a similar sense of community at Saint Joseph Hospital, where he is frequently admitted due to his condition. “They’re doing the work of angels and are really just angels in disguise,” he said of the hospital’s staff.

Citing the emergency room doctors who always get him right in, the nurses who sit with him and patiently discuss his most recent test results, the respiratory therapists who work around his schedule, the librarian who helps him research his condition and the people in the cafeteria who always remember his order, Nelson said, “They’re wonderful. I can’t say enough about Saint Joe’s.”

He also appreciates how the hospital’s doctors work seamlessly with his physicians at National Jewish Health. “They’re just excellent and work closely with my pulmonologists and infectious disease specialists,” said Nelson. “That’s one of the reasons I drive an hour to go there rather than driving 12 minutes to a local facility.”

The clinical collaboration between the hospitals helps with continuity of care, explained Sandhya Rai-Sherpa, MD, PhD, a hospitalist at National Jewish Health. Dr. Rai-Sherpa and her fellow hospitalists communicate by phone and email, ensuring that critical information is relayed from physician to physician, and physician to patient. “The most important thing is communication,” she said. “We do that really well, and it helps the patient.”

Just as he used to scale a fourteener by taking breaks to catch his breath and then climbing until he reached the summit, Nelson is determined to press on and persevere. “I want to push my limits,” he said. “I’m going to live to be 103.”