Life Before Zephyr^® Valves:

I was diagnosed with COPD about 15 years ago. After my dad passed away from Alpha-1 emphysema, I was tested and was negative for Alpha-1, but still had COPD and early stage emphysema at that point. I smoked for 30 years and was finally able to quit eight years ago.

My COPD has had a huge downhill impact on our lifestyle. Essentially, I went from being an active outdoor person, to being stuck at home. We had a house on Lake Michigan and loved to kayak, camp, and bike. I hunted for 30 years, spending the whole day in the woods. As the disease progressed, I couldn’t do much anymore. Life became very limited. I even had to retire early from my career as a general manager.

My doctor put me on Spiriva^® and Advair^®550, and in the early years the medication helped to manage it. As time went on the medications were less effective, and I had several ER trips because my oxygen levels dropped. I ended up with pneumonia twice and had to be put on steroids and oxygen. As the disease progressed, I needed oxygen regularly, and eventually I couldn’t get by without it. I was on four liters of oxygen 24/7 for two years. 

I was seeing a holistic doctor (who was also my neighbor). She had read an article about Zephyr Valves and she recommended I look into it. My regular pulmonary doctor did not agree that the valves were an option for me, so I called Henry Ford directly, had all the testing done, and qualified. I’m on social media and I always tell others with this disease, “don’t take what your current doctor says…you have to see someone who does the valves to be properly evaluated.” It makes me crazy that my treating doctors didn’t bring this to my attention and maybe I suffered longer than I had to.

Then came the battle with insurance. We really had to fight for coverage with Anthem Blue Cross. The Pulmonx Reimbursement Team stepped in and appealed again and again for me. They did not give up on me and fought for me all the way to the Federal Appeals Court. It took eight months, but I got my valves.

Life Before Zephyr^® Valves:

Like many people with emphysema, I had always been an active person before the disease started slowing me down. I was a runner and also did long distance biking. I’m retired now but in my career years as a CPA and CFO, I worked in a nursing facility and was always running around. I’d been a smoker for a long time but was already down to one or two cigarettes a day, trying to quit, when my pulmonologist diagnosed me with emphysema in June of 2014. That was it…I quit for good that day.

I was no stranger to the symptoms of this disease. My husband also suffers from COPD and my father died of emphysema. My dad had struggled with the excessive coughing, but in the early years of my diagnosis I only had the shortness of breath. It did cause me a great deal of anxiety. I did a lot of research online because I had a hard time understanding why my symptoms were so different from my dad’s. I wondered if it was my heart, but it was definitely my lungs.

To combat the symptoms, I tried various inhalers, though none of them worked that great for me. I only used oxygen sometimes, but I did need it to exercise or recover from a cold.

The disease was slowly wearing me down. I couldn’t walk very far anymore. I’m an artist and I love to go to the Art Institute in Chicago, but it’s quite large and requires a lot of walking — I just couldn’t do it anymore. One of my studio art classes became difficult to attend because I had to park so far away. It was getting to the point where I was going to have to give that up too and the thought of that was heartbreaking.

I was online one day and the link to the Zephyr Valve page popped up. I called my doctor immediately and he gave me a referral to Dr. Desai. I went to see him in December and had the procedure two months later. There was no hesitation because I figured I had to try it, especially with it being non-invasive.

Life Before Zephyr^® Valves:

I was diagnosed with COPD/emphysema in 2010. Before COPD/emphysema, my life was so full. I was a Mr. Mom and raised my three kids on my own. Once they were grown, I enjoyed playing golf and had an active social life.

I’ve been a plumber for over 50 years and I’ve breathed in all kinds of dust, asbestos, and who knows what else. That, coupled with smoking, did a number on my lungs. I would end up in the hospital two to three times a year. As the disease progressed, I began to have a lot more bad days than good ones. I was living alone and just taking a shower or walking from one end of the house to the other was difficult. I had to get people to help me with the basics of taking care of myself.

It is frustrating when you can’t do what you want to do. I missed out on a lot of things, like dance recitals for my grandkids, because I just couldn’t do the walking. I couldn’t eat much because it was too uncomfortable. My children were worried about me because as COPD limited my life, I became really depressed. I went from being a social person to being alone, and the feeling of hopelessness was overwhelming. Fortunately, I did go to talk to someone and that helped me get through.

About two and a half years ago, I was in the hospital being treated for a flare up and the pulmonary doctor there told me about the valves. I told my doctor at the VA in Dayton right away and we kept following the status of the valves until they were approved by the FDA. I was one of the first in Dayton to receive the valves. I didn’t worry about them being new; I was desperate to try something to help get my life back.

Life Before Zephyr^® Valves:

Before my diagnosis of COPD, I lived a very full life. I’ve been married for 45 years, raised three kids, and now have nine grandchildren. The grandkids all live close by and are such a big part of our life. I work as a real estate professional specializing in selling new homes for a national builder. In our spare time, my wife and I enjoy our small beach house in Ocean City, MD.

I was very healthy before this disease. Growing up in New England, I loved the ocean and swimming became my sport and passion. I was a New England swimming champion my junior year of high school and I coached for many years. I swam almost daily until about five years ago when my lungs just wouldn’t allow me to get in the water anymore.

I smoked for about 30 years, but I had quit five years before my pulmonologist diagnosed me with COPD/emphysema. The first time I used oxygen was back in 2005. I got very sick and was diagnosed with congestive heart failure, but that was a misdiagnosis. What I really had was pneumonia. My lungs deteriorated from then on. By 2018 I needed the oxygen full time and for the past 12 months, I didn’t have the lung capacity to support walking, even with oxygen. If I went to the grocery store, I had to use the handicap cart. I couldn’t even make the bed. The simplest tasks were not possible anymore.

This disease robs you of your life. My life became limited in so many ways. I couldn’t swim anymore and socializing was difficult. It is hard to join in conversation when you are struggling to breathe. You really start feeling like a smaller version of yourself. It truly is depressing.

When my pulmonologist brought up the Zephyr® Valves and referred me to Dr. Mahajan, I said, “Sign me up!” Dr. Mahajan’s nurse, Nancy, explained the procedure to me and arranged all the testing. I was supposed to have my valves in September, but it was postponed a few weeks because I needed a cardiac clearance.

Life Before Zephyr^® Valves:

Before COPD/emphysema I was always on the go. Living in Florida, I grew up on the water and love surfing and scuba diving. In my career I was a domestic violence counselor, Juvenile Justice Resident Officer, and a property manager. I was also a cheerleading coach and gymnastics instructor. Needless to say, I kept very busy!

About 10 years ago I had to call 911 because I couldn’t breathe. I was put on a ventilator and in an induced coma. They thought it was an allergic reaction, but it was my lungs. I had a new grandbaby that was only 15 days old when that happened. To think of all I almost missed.

Once I was diagnosed with COPD/emphysema, I tried to go on living life, but I kept getting sick. I was on prednisone several times a year. I did go to a pulmonologist, but I didn’t like what he had to say. He told me all the things I couldn’t do, and I was shocked when he recommended I get on the lung transplant list.

Five years ago, on a trip to Hawaii, I realized I was really struggling with all the walking. It wasn’t too long after that just walking to the car had me winded. About four years ago they put me on oxygen. I was a “closet user.” When everyone else took a lunch break, I’d go in the car and drive around to use my oxygen where no one could see. I didn’t even want to tell my kids!

My big life started to shrink. I used to teach diving and swimming lessons, but it got to the point where I couldn’t even clean my pool anymore. Some days I didn’t even care if I ate. This disease was taking a physical and mental toll on me.

I still had some fight in me though. I have four biological grandkids and five step grandkids, and for some of them I am the only living grandparent. I wanted to be there for them. After seeing a post about the Zephyr Valves on Facebook, I asked my doctor about them. Well, he didn’t know too much but said the procedure wouldn’t work for me because my lungs were already too far gone. I told him we’d have to agree to disagree, and I went to the Mayo Clinic where the valves were offered.

At Mayo, Dr. Bussy explained the guidelines and answered all my questions. After all the testing, they called to say I qualified….and boy was that a reason to celebrate!

Life Before Zephyr^® Valves:

I’d always been a high energy person. For over 25 years I was an Administrative Specialist for the medical science division of a large University. We managed the program for bodies donated to science and research. I was so passionate about my job, and for many years I was president of the University’s Administrative Professionals Association. My life was full. I raised 5 wonderful children on my own. I volunteered at the Women’s Resource Crisis Center and helped to oversee the University’s Earth Day activities. Let’s just say I was one busy lady before emphysema/COPD came along.

In September 2018, I caught a cold and it just spiraled. I ended up being hospitalized and sent home with oxygen. I remember thinking “I don’t need that. I’m not an old lady!” But the following winter, I was hospitalized several more times and on March 8, 2019, I was sent home with oxygen again, but this time I needed it 24/7.

My life went from 60 to 0 very quickly because of this awful disease. I had to retire on disability from a job I loved. I was stuck at home attached to a giant oxygen hose. My friends and coworkers were shocked. They would say “no way, not Florence” because I had always been so involved in life. I felt like I was losing my identity. It was such a difficult time.

I was in the hospital with an exacerbation when I first met Dr. Nishi’s nurse, Gisele, and heard about the Zephyr Valves. Gisele looked just like an aunt of mine and I felt so comfortable with the way she explained the valve procedure to me. Just a few days later my aunt, the same one whom Gisele reminded me of, called out of the blue to tell me she had a dream about my dad who had passed many years ago. She said she was supposed to tell me I’d be okay and there was a new path for me in life. I know everyone doesn’t believe in signs, but I knew this was a sign I was meant to try this.

At first, my insurance denied the procedure, but Dr. Nishi’s office fought for me. I went to pulmonary rehab while they appealed the insurance denial. The rehab taught me how to move slower but do more. It really prepared me to be ready for the procedure when the insurance approval came through.