Still here: Living well with COPD, one breath and moment at a time

At 40, Richard was told he might only have a few years to live. More than three decades later, he’s still here, embracing each day with honesty, courage and compassion. From creating a COPD support network that helped thousands, to finding comfort and meaning through palliative care, Richard is redefining what it means to live well with a chronic illness.

A calling to help others, and a life well lived after COPD diagnosis

Richard moved to New York City from Wisconsin when he was just 19 years old. Drawn to a career that allowed him to support others, he became a clinical social worker. Eventually, he became an administrator to make an even greater impact. 

“It was a wonderful career,” Richard said.

But at 40 years old, his life shifted when he was diagnosed with chronic obstructive pulmonary disease, or COPD — a progressive lung disease that makes it hard to breathe and worsens over time. It’s most often caused by long-term exposure to irritants such as cigarette smoke or air pollution.

Learn more about pulmonary care at Nuvance Health.

Richard had what was then experimental lung reduction surgery 31 years ago. He believes that early decision extended his life.

“It’s why I’m still kicking,” he said.

Still, even after the surgery, his doctors predicted he had only two to three years to live.

“What a waste of energy and a burden to carry, thinking I had only a few years to live for decades,” Richard reflected.

Finding purpose while living with COPD

Richard was devastated when his health forced him to stop working. True to his nature, he redirected his energy into helping others living with COPD.

A self-proclaimed nerd with a passion for absorbing information — especially about science and religion — Richard became a go-to source of knowledge and support. He started a COPD newsletter with 4,000 subscribers and even published a No. 1 bestselling book at the time on the subject.

Thirty-five years after his diagnosis, Richard is still here — now 75 years old, living in Danbury, Connecticut, and spending his days with his beloved partner, Katie.

Turning to palliative care in the face of advanced COPD

After a recent bout of pneumonia, Richard’s oxygen levels began to drop. He was hospitalized, and for the first time in decades of living with COPD, he asked about palliative care.

“It was difficult to get air, and my body would go into a panic,” he said. “It was a frightening feeling. I knew I needed help.”

Palliative care focuses on improving quality of life for people with serious illnesses. It’s not the same as hospice care — and it’s not just for end-of-life.

“You’re not signing up for a subscription of what comes next,” Richard shared, encouraging others not to fear it.

“Palliative care helps you maintain your quality of life and ease your suffering,” he said. “Living well matters, because you never know who may live beyond the expectations from their condition.”

Find a palliative care team near me.

Support for the mind, body and spirit

Richard found solace through palliative care with psychotherapy for the mind, exercise for the body as well as medications for mental health and physical symptoms.

His first conversation with Rosie Bishop, a registered nurse from the Danbury Palliative Care team, was unforgettable.

“She spoke to me with such empathy; it felt like she crawled through the phone and gave me a hug,” Richard said. “It was a memorable moment.”

Over the last year, Richard has worked with Melanie St. Raymond, a palliative care social worker, to help manage anxiety, panic and depression. He also received support with medications and exercise techniques to manage physical symptoms of end-stage COPD.

“Living well for me means being helpful and productive. Melanie brought that out in me again and helped me be more positive,” Richard said. “I also learned how to worry less about the future and things I can’t control, because no one really knows what tomorrow will bring.”

He added: “Practical advice has more weight when you hear it from a therapist.”

“Therapy with Melanie has been like a spa for the mind. It’s my time to get things off my chest and be real,” he said. “Melanie is a very special person; she’s down to earth, and there’s no psychobabble.”

Richard also sees Dr. Jeanine Famiglietti for outpatient pulmonary palliative care support.

“She’s compassionate, gifted, grounded and patient. She connects with me and gives me undivided attention,” Richard said.

“The entire palliative care team is outstanding, every single one of them. They talk to each other to provide their patients with consistent care,” Richard said.

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Redefining good days and asking for help from COPD

Richard said he has good days and bad days. Good days mean waking up early, getting through his morning treatments, taking a shower and getting dressed — all without needing to take many breaks.

Some days, he stays in bed or sits at the computer. On those days, he reflects on what he calls “a very satisfying life.”

“I’m not clinging to life in that sense. But I do get scared,” Richard said.

He’s also learned the power of asking for help. Richard loves to cook but now has help with meals and daily chores so he can save his energy for what matters — like exercising.

“Asking for help isn’t a sign of giving up; it doesn’t mean you’re at your end. It means you’re making the most of what you have now,” Richard said.

“If you have COPD, I believe exercise and pulmonary rehab is the best thing you can do for your well-being — mentally and physically,” he added.

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Still here — and helping others live well, too

True to his lifelong calling to support others, Richard continues to share his experience so those with chronic conditions know they are not alone.

“If you’re suffering, explore palliative care. There are experts who can help you,” Richard said. “I kept wondering, ‘Why am I still here?’ and my palliative care team helped me find the answer and purpose.”

He is surrounded by Katie and their extended family, and continues to stay grounded, grateful and open-hearted.