We all juggle so many daily responsibilities – whether it’s navigating a career, caring for children or attending school – that it’s often hard to focus on your own health, let alone the health of your loved ones. However, family members can potentially play an important role in both ensuring their loved ones get an appropriate diagnosis and supporting continued care. For Randy, a retired professor of Modern Languages, his daughter and wife may have saved his life by ultimately helping him get the diagnosis and care he needed and helping to manage his condition and overall well-being.
Starting in 2004, Randy started noticing various (seemingly unrelated) issues with his health. Initially, he was diagnosed with carpal tunnel syndrome, which he assumed to be related to his profession, since he was often typing and writing. He then noticed tingling in his extremities, lack of stamina during routine jogs, and shortness of breath that got progressively worse over time – however, Randy associated most of these symptoms with getting older. One day while climbing the stairs at his daughter’s townhouse, Randy’s daughter noticed that he was having a lot of difficulty. She knew something was wrong, and it wasn’t just her dad getting older. She rushed him to the ER immediately. After receiving multiple diagnostic tests, Randy learned that he had congestive heart failure, and the walls of his heart were stiff. A genetic test then confirmed his diagnosis of hereditary transthyretin amyloid cardiomyopathy (ATTR-CM), nearly 15 years after the onset of his symptoms. ATTR-CM is a rare and life-threatening disease that is often misdiagnosed because its symptoms are similar to those of heart failure or may even seem completely unrelated to a heart condition.1,2,3
While Randy’s daughter took action that helped him finally reach a diagnosis, his wife, Priscilla, who has been his caregiver since he was diagnosed with ATTR-CM, is critical to helping Randy maintain his health.
“One of the most important things that Priscilla does for me as my caregiver is that she insists I take my medication on time. I tend to be more relaxed when it comes to my treatment, but she keeps me on a routine,” says Randy. Not only does Priscilla monitor Randy’s medication, but she also monitors what he’s eating to ensure that he stays as healthy as possible. “One of my main jobs is cooking the food we eat. We now have to be very careful that he doesn’t have too much salt in his diet.”