“I got COVID-19 right out of the gate,” Robert recalls. “At that time, they didn’t even have a test for it, so when I came into the hospital with the worst chest cold of my life, the doctors gave me antibiotics for an upper respiratory infection, or pneumonia, and sent me home.” But just a few months later, he was back in the hospital, with more severe respiratory symptoms.
The doctors determined he had fluid in both his lungs, which they drained, but significant damage had already been done. After a week in the hospital, he was sent home, but his symptoms persisted. A wet cough hinted those pockets of fluid remained in his chest, and in less than a year’s time, Robert was once again seeking treatment for severe pneumonia. A new pulmonary function test told the doctors that the damage from these illnesses meant Robert was now living with stage two COPD. Chronic obstructive pulmonary disease (COPD) is an umbrella term given to individuals diagnosed with emphysema, chronic bronchitis or both.
“I was really upset, COPD had never been brought up by my doctors before,” Robert said. A follow up CT scan showed that Robert also had partially collapsed lungs. He felt hopeless. “I kept asking what do I do, and not getting a lot of answers. But I knew I couldn’t keep living like this,” he said.
My Customized COPD Treatment Plan
Though his doctor told him that the fluid would resolve on its own, two and a half years in and out of the hospital made Robert want to be more proactive. So, Robert decided to do a deep dive into COPD treatment on the internet. He found a plethora of resources, including advice from other COPD patients. He ordered respiratory therapy device, a flutter device, and a stethoscope, so that he can listen to his lungs whenever he suspects something is off and share any new or lingering symptoms with his healthcare provider
In addition, Robert leaned into physical activities to help improve his lung function. He now even teaches a spin class twice a week. “I stay very active, and I really push myself because that was the one thing the doctors told me could help; exercise and breathe as deeply and as forcefully as I can to keep my lungs strong,” Robert said.
His hard work and determination has made a difference, with his last pulmonary function test showing that the disease has not progressed, and he is in better overall shape than before. “Most of the lifestyle changes that you need to do to make a substantial change are no different than what the doctors tell us all. Eat right, exercise, sleep, drink plenty of water, manage your weight and stop smoking if you currently use tobacco products. If you do these things, you may slow the progression of your COPD,” he said. “And for me it has paid off. I think the fact that I remain a very active person has played a huge role in my achieving some respiratory stability.”
Creating a COPD Support Group
In addition to the physical challenges, the mental toll that a COPD diagnosis had on Robert was something he never expected. “It's just one of those things that gets in your head, and you are never able to forget about it. You wake up in the middle of the night and you think about it. Every time you cough, you think, am I going to have an issue here?”
That is why he found some comfort in joining online message boards and reading other people’s journeys. “Most people are in a lot worse shape than I am, because COPD commonly gets diagnosed in stage three and stage four. They're talking about oxygen machines and endobronchial valves and other things that sound very challenging,” Robert said. “But it is important for me to be prepared for what might be in my future, and it also encourages me to continue with my at-home treatments so that I can try to stay in stage two as long as possible.”
While looking for an in-person support group, Robert stumbled across Better Breathers Club meetings, and was disappointed when he learned that his local Club had closed because of COVID-19. So, he contacted the Lung Association to ask about facilitating one in his community. “With COPD, nobody understands what you're talking about unless they are going through it, so it is so important to be a part of a support group,” Robert explained.
COPD is a chronic progressive lung disease, meaning there is no cure, and it tends to get worse over time. However, there are many treatment options available. Learn more at Lung.org/copd.
Blog last updated: August 23, 2023