Sue S. lives with her boyfriend in Ohio. She has severe COPD and was experiencing increasing shortness of breath until she had endobronchial valves (EBVs) placed in her lung that relieved the trapped air, allowing her to breathe easier. Now, she can’t wait to start leash training her 3-year-old dog, Pebbles, on walks around the neighborhood. Here is her story.
How did you find out about EBVs?
I really wanted to do something so I would feel better. I’ve been dealing with COPD for some time and had heard about endobronchial valves several years ago. I tried to research it, but I couldn't find much information online. My brother also has COPD and went to his doctor and had the valves inserted. That motivated me to really investigate it.
What are endobronchial valves?
How did you seek out a specialist?
My regular pulmonary doctors helped me go through all the usual tests, get the medications and monitor my symptoms. But even when I talked to people that work at the pulmonary clinic, they didn’t have a lot of information regarding EBVs. If my doctor knew more about it, she might have recommended it to me. But because she didn’t, I was the one who kept pushing.
Eventually, I got an appointment at a local clinic that does the procedure, and we spent a day going through pulmonary testing, blood work and a special CT scan. After all those tests the doctors said they didn’t think I was a good candidate. I was heartbroken.
So, I decided to get a second opinion from the doctor who had treated my brother. After looking at my charts and reviewing my test results, he said he would do it.
How did the procedure go?
My story is an unusual one in that I had the procedure done twice. The first time, I was in the hospital for three days. I felt good after the procedure, and all was well for a couple of weeks. But driving home from Florida where I had the procedure, to Ohio, where I live, took a lot out of me. I felt worn out. The next day I could hardly move, and my breathing went down fast. I tested positive for pneumonia and was put on antibiotics.
Since I was having such a hard time breathing, a doctor in Ohio suggested I remove the valves, and I was back where I started. I returned home the same day the valves came out and rested. It was a slow go to get my breath back. I could only walk 15-20 steps before needing to stop to catch my breath or go back on oxygen. When you feel like that, it’s hard to get motivated to do things. So, I asked my doctor how soon we could re-insert them. My doctor recommended we try again and I was confident this would work. The second time, I also stayed in the hospital for three days after the procedure.
How are you feeling now?
It’s been incredible. Before, I would take a few steps and then have to wait to catch my breath. I started pulmonary rehabilitation and that got me off the couch and moving. I have a pedometer to watch my steps. Every day I can do something that I couldn’t do before. My boyfriend said, “Hey, look at you go!”
Now I have so many plans. My boyfriend and I have a motorhome and hope to travel. Before the procedure, it just wasn’t possible for me to go with him on an adventure. I have a son in California and we’re going to go visit him for a few months. Being able to do that is everything to me.
Living with chronic lung disease can be challenging, and support is available to help you learn more about disease management and connect with others going through similar challenges. I would encourage others to advocate for themselves and learn more about the endobronchial valve treatment. There is no cure for this disease but there can still be years of good living.
Promotional support provided from Zephyr by Pulmonx
Blog last updated: June 7, 2022