Palliative Care Patients Tell Their Stories
When we understand what matters most to a patient living with a serious illness early in the course of treatment, the results are remarkable. Patients feel better and live better. Check out these stories of real people living with a serious illness and benefitting from palliative care.
Meet Aly.
A 23-year-old, self-described Type A personality college student and sports enthusiast. A real go-getter.
Diagnosis: Juvenile arthritis, mast cell disease, Churg-Strauss Syndrome.
Aly
How did the diagnosis affect me?: I was doing all of the things high schools kids did. Going to school. Playing sports. Volunteering at my church. But then I began losing a lot of weight. I felt fatigued and was experiencing severe joint pain. Once I was diagnosed, I felt desperate for help. Not just help treating my disease, but help living my life. Would I lose my independence? Did I have to stop doing the things I love? Could I still go to college?
What matters to me?: A normal college experience. College was always part of my plans. I had high expectations of myself. And I wasn’t going to stop now. I was determined to have the best life possible.
My palliative care team… gave me hope for the first time. They focused on me as a whole person, not just my disease or the physical stuff. They helped me set reasonable goals and gave my life purpose again. I not only went to college, I also joined the college marching band.
Meet Kelly.
A single mom whose whole world centers on the love, happiness and well-being of her young son.
Diagnosis: Chronic pain due to lupus, mitochondrial disease, autonomic neuropathy.
Kelly
How did the diagnosis affect me?: Because of my daily pain, I lost control of my life. I was unable to work or perform basic tasks. I began to rely fully on my parents to not only take care of me, but my son too. I felt helpless.
What matters to me?: Hanging out with my son. He’s my whole world. I just wanted to be able to play catch, go for walks and make dinner for him.
My palliative care team… was the difference maker for me. For the first time, I felt like I was being heard. When they asked me what brings me joy, I didn’t know what to say. I hadn’t felt joy in so long. That’s when I knew my palliative care team wouldn’t rest until they fully understood my daily struggles and could give me my life back. Today, I’m not only managing my pain, I’m taking care of my son in ways I never thought possible. I’m even back to playing the piano for him.
Meet Beth.
A 55-year-old environmental activist and director of the office of sustainability for Baltimore, who works tirelessly to help beautify her city one planted tree at a time.
Diagnosis: Stage IV appendix cancer.
Beth
How did the diagnosis affect me?: My surgeries, treatments and a long list of medications kept me in bed most days feeling weak, growing thin and at rock bottom. I was spending every waking minute thinking about growth levels, medications and treatments. It didn’t feel like me.
What matters to me?: Staying active. Traveling, gardening, feeling energetic and continually moving forward. I want to talk about having an active life, and not just about the cancer.
My palliative care team… not only alleviated my pain, but also encouraged me to set small goals and work towards them. I can’t tell you how nice it was to be talking about the future. Just to be able to focus on steps I could take to keep moving was world changing for me.
Meet Debbie.
Hair dresser, salon owner and unofficial therapist to her clients who turn to her not only for a good cut, but great advice on everything from boyfriends to community issues.
Diagnosis: Multiple myeloma.
Debbie
How did the diagnosis affect me?: The nerve damage was affecting my hands and my feet to the point that I couldn’t work anymore. Living with the pain, I shut down. I stayed in my bedroom.
What matters to me?: Getting back to work. I’m lost without my work and my clients, who are like family.
My palliative care team… included me in the planning discussions about my treatment. I wasn’t pushed to the side while they met on my behalf. They put me in the driver seat, allowed me to discuss options and make decisions that met my needs and desires.
Meet David.
A 73-year-old retiree married for more than 51 years and dedicated to taking care of his family.
Diagnosis: Colorectal cancer.
David
How did the diagnosis affect me?: Frequent visits to the ED led to long stays at the hospital laid up in a bed. My life was a disaster.
What matters to me?: Going to church, shopping, visiting my children and grandchildren.
My palliative care team… asked what may have sounded like simple questions, but to me, it showed that they really cared. They helped me manage my symptoms, pain and emotions. Meeting with them is not like a business. It’s not like a treatment, but a treat.
Meet Matt.
A 38-year-old artist and snowboarder.
Diagnosis: Paralysis from upper chest down due to a an accident at age 23. The resulting shortness of breath, severe nerve pain and emotional stress continued for years.
Matt
How did the diagnosis affect me?: I was having a hard time dealing with the loss of my life - the life I once had and knew I’d never have again.
What matters to me?: Independence. I wanted to accomplish basic things, like leaving the house to visit people or places. I also wanted to make decisions for myself. Decisions that affected the quality of my life.
My palliative care team… empowered me. Because they listened to my stories, my complaints and my needs without judgement, they were able to help me manage my pain and my emotions. They recognized that I went for so many years without processing my emotions surrounding the accident and was stuck and frustrated. I didn’t know how to move past it. After working with my palliative care team, I felt so much better physically and emotionally. It was like a huge cloud was lifted. I even had the motivation to paint again.
Want to share your story?
Submit your palliative care success stories directly with us or share on social media with the hashtag #AHApalcarestories.
