I never would have believed it, but I’m actually planning for my old age now. I’m not done with my life yet.
When Richard was transferred from hospital to Casey House, his weight had plummeted to 92 pounds on his nearly six-foot frame. He had advanced cirrhosis of the liver, the seemingly fatal result of hepatitis B compounded by HIV infection. His decimated immune system had opened his lungs to a terrible infection and his belly was so severely distended with fluid that he was immobilized and in excruciating pain. His children had been told to prepare for his death.
“I got used to thinking I would die,” recalls Richard. “I had a lot of time lying in bed to get used to the idea, so I wasn’t really scared, but I was worried about my kids.”
At the time of his transfer to Casey House, it seemed certain he would die here. But the interprofessional team—led by Medical Director Dr. Ann Stewart—wasn’t willing to give up on Richard’s life. They conducted careful tests, referred him to specialists, and worked to keep him as comfortable as possible. Volunteers supported Richard to keep him active, escorting him in his wheelchair for short excursions and tempting him with low-salt french fries, the only food he craved in the midst of his terrible pain and nausea.
“When you’re told you’re going to die, you don’t want to do anything,” says Richard. “The volunteers, the nurses, some of the other residents who became my friends… they kept me going. But it was a rough time.”
Then one day Dr. Stewart came to him with good news: a consulting gastroenterologist had determined how to treat his aggressive liver disease. The prognosis was hopeful. “I felt this incredible relief,” recalls Richard. “But it didn’t seem real at first. I kept thinking she was just telling me this to make me feel better.”
After some time, with the new treatment successfully underway and the fluid draining from his belly, Richard was able to try walking again. “The first time I went for a walk down the block using my walker, one of the nurses came with me. She was so nice, she didn’t rush me. We walked all the way to McDonald’s so I could get my own french fries. People had always gone to get them for me before. It was good to be able to do something for myself again.”
“Our multidisciplinary team is key to what works so well at Casey House,” comments Dr. Stewart. “At one time, our care was almost exclusively palliative, but today it is much more like acute care medicine, which requires a team approach. We’re seeing many clients with multiple and very serious illnesses, such as hepatitis B or C, as well as diseases that are associated with their long-term medication use or aging with HIV, such as heart disease and kidney disease. On top of all this, many are dealing with issues with mental health and substance use. There can also be cognitive impairment, which can be challenging to identify and treat.“
A research project conducted by Dr. Stewart in collaboration with Dr. Mark Halman of St. Michael’s determined that Casey House residents contend with an average of five significant illnesses layered on top of their HIV disease, requiring a skilled and multifactorial approach to treatment.
Today, Richard receives weekly outpatient care at Casey House and is hopeful that his health will eventually become more stable. He’s trying to save money so that when his treatments are finished, he can move closer to his family in Newfoundland. Once there, he plans to buy a small house and earn a living selling handcrafted Mi’kmaq jewelry and leatherwork.
“I never would have believed it, but I’m actually planning for my old age now,” says Richard. “I’m not done with my life yet.”