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HMSW Works to Close Gap in Care for Adults with Sickle Cell Disease|
FORT WORTH, Texas — Sickle cell anemia sufferer Kellie Williams was 15 years old and at a college football game when she had her first pain attack.
“The best way to describe it is a hurting, a throbbing, and a sharp pain all at once,” she said. “It’s like a heart attack in your bones and joints. I didn’t know what was happening to me. No pain medication helped, and I was screaming and begging my parents to take me to the hospital.”
The 33-year-old Fort Worth resident would later discover that her painful attack, or “crisis,” is a very common and debilitating effect of sickle cell anemia. Those with the condition have red blood cells that are crescent shaped instead of round, and the oddly shaped cells can get caught in small blood vessels. Blood cells build up and block oxygen to parts of the body, causing extreme pain — or in some cases — heart attack, stroke and death.
The Fort Worth area has several comprehensive management programs aimed at helping children with sickle cell anemia manage the disease and avoid crises like the one Williams experienced at 15. But these pediatric programs stop following patients once they reach adulthood, and adult sufferers of the disease can experience multiple crises each year.
As an adult, Williams struggled to manage her disease, making trips to the emergency room every two to three months with extreme pain and often staying in the hospital for three to five weeks at a time, she said.
To close this gap in care, Harris Methodist Southwest Hospital (HMSW) is developing a citywide program designed to help adult sickle cell sufferers like Williams have a better chance of living a normal life, with fewer painful attacks and hospitalizations.
About the program
The plan involves a new emergency room protocol that demands aggressive care for sickle cell patients as soon as they arrive, so that symptoms can be controlled within two to three days, said Linda Humphries, R.N., C.N.S., C.C.R.N., clinical nurse specialist at Harris Methodist Southwest Hospital and chair of the taskforce.
“If these people sit in the emergency room for hours waiting to be seen, their pain will exacerbate and it will take a long time to get it controlled after they are admitted,” Humphries said.
The second piece of the plan is aimed at transitioning sickle cell sufferers from the adolescent management program into an adult program in order to break the cycle of pain crises and quick-fix emergency room visits.
“We want to provide sickle cell patients with community resources that can support them when they go home,” said Mary Robinson, chief nursing officer for the hospital. “The goal is to help make their disease more manageable and decrease visits to the emergency room so that their quality of life is improved.”
The program offers a long-term solution by re-educating adults with the disease to identify the triggers that cause crisis, including increased activity, stress and illness. Hematologist Dr. Donald Beam at Cook Children's Medical Center is drafting a letter to Tarrant County physicians and creating a database of those willing to help, Robinson said. Beam is part of the collaboration with Harris Methodist Southwest Hospital to get the program up and running.
“I think sickle cell patients do need a program that will teach them how to take care of themselves,” Williams said. “A lot of them just don’t know what to do with their health and they need to learn that there is hope.”
About Harris Methodist Southwest Hospital
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