DorlandHealth

With rising health care costs and greater longevity of people living with chronic diseases, case managers must provide services that are cost-effective and that improve a patient’s quality of life. As a nurse case manager at Memorial Sloan-Kettering Cancer Center, I work with patients with systemic AL amyloidosis.

Amyloid is a group of diseases in which abnormal proteins deposit into one or more organ systems, most commonly involving the heart and kidneys. Patients diagnosed with amyloidosis involving the heart have a median survival of 13.2 months. Common presenting symptoms are suggestive of congestive heart failure—shortness of breath, fluid overload and hypotension. Amyloid patients have frequent clinic and emergency department visits as well as hospital admissions due to complications. In addition, patients may be required to attend clinic solely for the purpose of monitoring vital signs and weight. Patient compliance with self-monitoring of fluid status, orthostatic vital signs, weight and salt-restriction is also critical to improving performance and medical status.

The rollercoaster began in 2003. It was in the summer of that year when my dad first exhibited symptoms that were later diagnosed as manifestations of amyotrophic lateral sclerosis, or ALS. What is commonly known as Lou Gehrig’s disease, named after the legendary ballplayer, ALS is a terminal illness that kills motor nerves controlling voluntary muscle movement.

The irony in my personal story is that my father, Dr. Richard K. Olney, is a neurologist who founded the ALS Treatment and Research Center at the University of California, San Francisco (UCSF), in 1993. When he was diagnosed with ALS in June 2004, he was forced to transition from running the center to becoming a patient. ALS is not contagious; this was a purely random development. Because of his specialized knowledge, my father knew exactly what to expect. Yet that insight hardly eased the harrowing diagnosis and its effect on my family.