Patsy Weber’s estate has health care professionals at her local clinic and a regional medical center. In June 2021, he went from being so healthy that he only took a few sick days during his 40 years working at a bank in Sheldon, Iowa, to being unable to get out of bed.

For about two weeks, Patsy has been dealing with mysterious symptoms that include morning headaches that disappear by the time she gets to work and fatigue that drags her through the day.

A week of uncertainty

One morning in early June 2021, she told her husband, Doug, she didn’t think she would make it. But the couple managed to get to the local clinic, where his symptoms puzzled the staff. Patsy went home, feeling worse than the morning. Back at the clinic, the staff checked his blood oxygen level, which dropped to 68.

Admitted to the hospital that day, Patsy’s condition worsened. He was intubated and taken by helicopter to a medical center in Sioux Falls, South Dakota. The health care team suspected that he had Guillain-Barre syndrome, a rare disease in which the body’s immune system attacks the nerves. They took a nerve sample from his ankle and a muscle sample from his arm and sent them for testing to the University of Iowa medical center in Iowa City.

At one point, the health care team thought he was progressing enough to remove his breathing tube; three hours later, it was inserted again. After nine days in the ICU in Sioux Falls, Patsy’s team considered moving her to a care center in Lincoln, Nebraska. When Patsy wrote Doug a note on her tablet: “I want to go to the Mayo Clinic.”

Find answers at the Mayo Clinic

On July 2, 2021, Patsy was flown to Minnesota and admitted to the Mayo Clinic in Rochester. Within a day, the eight specialists assigned to Patsy’s care identified her mysterious condition: nemaline myopathy. This genetic, neurological disease causes muscle weakness and reduces reflexes throughout the body, including those responsible for movement, breathing and swallowing. There is no cure; Treatment includes exercise, therapy, and breathing and feeding support.

“This is the 20th case my neurologist has seen in May,” Patsy said.

One of the first steps in his care was to give him a tracheostomy to help with breathing. He was also placed with a feeding tube. Patsy was taken to Saint Marys Campus, Rochester, where she was placed under the care of pulmonologists in the respiratory care unit.

Once he was off the ventilator that was helping him breathe, Linda Yin, MD, an ear, nose and throat (ENT) specialist, tried to give him a speaking valve for his tracheostomy so he could communicate with those around him. to him. When Patsy had difficulty forming a voice, it was found in the scope exam of Dr. Patsy’s vocal cords were also paralyzed. Dr. Yin and her colleague Semirra Bayan, MD, treat paralysis with Restylane injections to help with speech and swallowing. Despite treatment, Patsy still cannot speak; that’s another step.

Another thing her health care team found: both of Patsy’s eardrums had ruptured, causing her to keep writing to Doug that he couldn’t hear. The ENT team treated the wound to prevent her from getting an infection.

When she was stronger, Patsy was ready to enter a rehabilitation facility to help her try to regain the functions she had lost. The facility that best suited his needs was Mayo Post Acute Care at the Mayo Clinic Health System in Osseo, Wisconsin.

But Patsy was still very sick. His health care team in Rochester was blunt with him: he would never be able to eat, walk or talk on his own again. He may also spend the rest of his life in a nursing facility.

Her sister, Missy Gruis, is a home health care nurse. When she visits Patsy and Doug in Rochester, she gives her sister a piece of advice that Patsy takes to heart: “Do whatever they tell you. If you don’t, you’re never coming home.”

Returning to his life in Osseo

“Osseo was the best option because I had to be on a respirator,” Patsy said. “I’m not happy about it because it’s so far from my home and family. But it’s the best thing that happened to me.”

When she arrived in Osseo, Patsy was transferred to the care of pulmonologist Mark Lindsay, MD It was there that Patsy and Doug met her “super support team.” Over the next two months, respiratory therapists David Beck-Leisz and Jesse Myers; speech therapists Amy Hilbert and Briana Kenyon; and the nurses and staff will help him gain strength, get off the respirator and relearn how to speak and swallow.

At first, Patsy was on a ventilator 24/7. The goal is to wean him at least part of the day. Because his disease affects the strength of the muscles that help him breathe, he doesn’t get enough oxygen at night and carbon dioxide builds up in his body. That was the cause of the morning headaches that led to his diagnosis.

Patsy’s respiratory and physical therapists are working to strengthen her chest muscles. When he had more energy, he only needed the ventilator at night to make sure he was breathing deeply while sleeping.

The tracheostomy was permanent because the muscles around his trachea and throat were also weak. But with the speaking valve, he can speak. That’s where speech therapists come in, training him how to use it so he can carry on a conversation.

“We train every day in Osseo,” Doug said. “Eventually, I had the team do everything – manage the ventilator and even the feeding tube – so I could manage it in our home.”

One of Patsy’s biggest milestones was relearning how to swallow – and passing the swallow test.

He traveled to Eau Claire, Wisconsin, with Jesse and Doug for the test. “I haven’t even had an ice chip in my mouth in two months. I’m scared,” Patsy said. “But Jesse told me he wouldn’t let me choke and he’d be there if I needed suction.

“That’s what I needed to hear — and I passed,” he said. When asked what he wanted to eat or drink with his newfound ability, there was no question: an ice-cola.

Noticing his happiness, Jesse called the rehabilitation center ahead of time and asked them to stock some of his preferred brand, and have it waiting for him when he returned. One of her other therapists knows she likes iced coffee and brings her one when she gets to work.

“I can’t say enough about the care I received from the therapists and Dr. Lindsay. Some of the nurses would take a break and sit with me,” Patsy said. “It’s like I have a new family.”

That nurturing support was provided to help Patsy through the death of her mother, which occurred two weeks before Patsy was released. They arranged for him to watch the service online and comforted him in his absence. “Not a day goes by that we don’t think about them,” Patsy said.

Rehab rock stars

In all of his four-state moves, Doug was with him. He retired in January 2021, and when he got sick, she stayed by his side. Since Osseo is about a six-hour drive from their home, she stayed in a nearby motel with the help of Mayo Clinic Health System staff.

“Patsy and Doug are rock stars,” said Dr. Lindsay. “Osseo is the perfect fit for him, and he knocked his recovery out of the park. He’s very determined, but he’s also very lucky to have a great partner in Doug.”

Not many patients can go home on a ventilator, but because of Doug, Patsy can because she has the support she needs.

Dr. also praised. Lindsay the hospitalist Olawale Onibile, MD, and the entire rehabilitation team at Osseo for their excellence in meeting the needs of their patients.

“The strength of our program is our transitional care team,” he said. “Our experienced nursing and therapy teams know how to care for patients with complex needs. Their communication, collaboration and attention to patient safety create a nurturing environment so that patients reach their highest level of independence. It also helped to reduce Patsy’s stress and ensure that she and Doug felt confident in managing her care at home.”

Learn more about a rare disease

Throughout her journey, Patsy and Doug learn more about nemaline myopathy, including that the muscle weakness it causes may be a factor in the scoliosis she has struggled with throughout her life. Nerve and muscle samples tested in Iowa City revealed that he was born with the disease and that one of his parents carried the gene. Although the Webers had no children, Patsy alerted her siblings and their children to the need to consider genetic testing.

“Each test will lead to more awareness about this disease,” he said.

Two years after her health crisis, Patsy said, “They gave me my life. .

“The Mayo Clinic and the rehabilitation center are a big part of my life. Of course it’s scary, but they treat me like a whole person, watching out not only for my physical issues but also for my mental well-being . incomparable to anything else.”

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