Losing Her Father to Heart Failure Inspired an Amgen Employee to Help Patients
To mark Heart Failure Awareness Week (Feb. 9 to 15) Amgen staff member Lisa shared how the experience of losing her own father to heart failure motivates her to help others going through the same circumstances.
My father loved to sing…
“One of the symptoms he was experiencing from heart failure was shortness of breath, and it was so sad because singing was such a joy for my father,” Lisa recalled. “He would sing at weddings, he would sing around the house, and so for him, losing the ability to sing was heartbreaking. He went from being an active, sociable man who loved to travel and was an engaged member of his local church and community to someone who couldn’t be active, and then he needed to use a cane, then a walker, and finally a wheelchair.”
How did your father come to be diagnosed with heart failure? How did it feel when he was diagnosed?
My father had a stroke and he tried to make lifestyle changes, but they weren’t enough and seven months later he had a heart attack. I was with him on the day he was discharged from hospital. As we were leaving with a voluminous stack of papers, I noticed heart failure on a list of diagnoses. I was shocked, nobody had told us my father had heart failure. The discharge nurse spoke euphemistically and said my father’s heart just wasn’t pumping as well as it used to. But that doesn’t explain that heart failure is a distinct and unique condition that requires careful management and treatment. Some patients believe they had heart failure when they were in the hospital, but think they don’t have it anymore when they get back home. Some patients don’t even hear the words “heart failure” at diagnosis. Instead, their clinicians use euphemisms. There need to be efforts to raise awareness and understanding about heart failure, including what it means and how it can be managed, among patients, their loved ones and the general public.
What treatment was available to your father?
After his diagnosis I tried to get as much information as I could. He lived three hours away from me, so if I couldn’t be there in person, I joined by conference call whenever he saw a doctor. He was fortunate to be cared for at a specialist heart failure clinic before they became as widespread as they are now. He was taking all the medications recommended by the guidelines, and there was nothing more that could be done.
How did the progression of heart failure affect your father? And your family?
I can’t emphasize enough how important quality of life is to people living with heart failure, and their loved ones. My father said he wanted “more life in my days than days in my life,” and I think this is one of the most important points. We need to focus on preventing hospitalizations and giving patients with heart failure longer lives, but we also need to focus on giving patients better quality of life that allows them to stay active, spend time with their loved ones, have a social life and enjoy their hobbies. Depression is very common for people with heart failure. We also know that each time a patient with heart failure goes back to hospital and suffers from acute decompensation, that will, unfortunately, accelerate the progression of their condition. We need to keep patients active, socially connected and out of hospital.
What advice would you give to someone whose loved one has heart failure?
Make sure you get them to a specialist heart failure clinic, be an advocate and get your loved one the very best care available. Participate in cardiac rehabilitation along with the person living with heart failure, and make sure they take their medication and have a healthy diet. Most importantly, it’s crucial for everyone to stay active and maintain a social life. While heart failure must be taken seriously, it’s important to understand that a heart failure diagnosis isn’t a death sentence. Many people live for many years by managing their comorbidities and keeping as active as they can.
Cardiovascular disease is the leading cause of death around the world, and Amgen is dedicated to discovering, developing and delivering transformative medicines to improve the lives of patients including those with heart failure, a chronic, progressive condition that affects more than 64 million people worldwide.