When Rehabilitation Doesn't Lead to Recovery

Chari was a healthy and active 67 year-old passionate about advocacy and her community when a fall at the grocery store started a four-year nightmare.

"I was at the store when I started to feel dizzy and fell," Chari said. "They took me to the hospital, where I went into emergency surgery to repair a hole in my heart."

In a few weeks, Chari was back to her busy schedule, but she noticed feeling unusually tired and worn out. Her primary care physician diagnosed her with Type II Diabetes and told her the condition could be monitored to control the dizziness and fatigue. While she was on medication to control her symptoms, Chari's health continued to deteriorate and she sought a second opinion. Nearly two years later, Chari received a diagnosis from a new primary care physician: Hypertrophic Cardiomyopathy. Her heart was severely enlarged, and it was not adequately pumping blood causing the dizziness and fatigue.

Not long after, Chari attended her 10-year-old grandson's football game. When he scored a touchdown, she ran down to the field. Chari started to feel dizzy and weak. Her activity triggered a heart attack during which she fell, breaking her leg in several places. At the hospital, she had another heart attack and underwent emergency surgery to put in a pacemaker. Following surgery, Chari went into a coma. A week later, she woke up-she was unable to talk, her leg was in a cast, and she was told she had renal failure and damage to her liver and lungs. Chari had to undergo additional surgery on her broken leg.

When she was starting to recover, Chari was transferred to a rehabilitation center with a detailed discharge plan and specific instructions for her medication and physical therapy. She was told she would spend four to six weeks recovering at the rehabilitation center. During her stay, she developed a constant pain in her back and an ache in her broken leg. While staff told Chari not to worry, she thought her concerns were being ignored and was worried about her health. Eventually she called 911. Chari was taken to the hospital where doctors found she was so severely dehydrated her kidneys had started to shut down. She was also diagnosed with a staph infection in her leg. The sutures in her leg had not been removed in a timely manner.

Having nowhere else to go, Chari returned to the rehabilitation center. Again, she entered the facility with a detailed and specific discharge plan. She hoped the quality of her care would improve; but it did not. Her leg wound was not properly cared for. She insisted that it needed to be cleaned and the bandage changed. When she looked down, she saw a hole in her ankle and the screws and hardware in her leg. She started to panic and asked to go back to the hospital.

Eventually, Chari had to have four surgeries to repair her leg and ankle, and the staph infection nearly cost her her leg

Still enduring the struggles of her recovery, Chari continues to be a strong advocate. Even with all of the complications she experienced, she recognizes how quality, patient-centered care helped her recovery. The quality of care she received from her primary care doctor and at the hospital was a stark contrast to the rehabiliation center. Chari's experience underscores the need for coordination and accountability in every aspect of the health care system. Any missing link in a patient's care can dramatically alter his or her overall experience, even when parts of their interaction are overwhelmingly positive. It is the downsides of her experience that Chari holds onto today. "Because of my experience, I am uncomfortable with the health care system and unable to trust the people who have my life in their hands," she says.

Chari is a member of the PA Campaign for Better Care, a statewide campaign to secure quality, coordinated, and patient-centered care in PA.

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