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.

Life Before Zephyr^® Valves:

I was first diagnosed with emphysema 10 years ago. The crazy thing is I went through high school, college, and worked for a decade before I even held a cigarette.

Before emphysema I had a full life. We raised a family, traveled, golfed, and I had a full career. In the early stages it was manageable, but as time went on, even with medication therapy, the disease began to impact my quality of life.

I had always been an avid golfer, often hitting the links several days a week. But about three years ago, the emphysema won and I had to stop. In the last few years even small activities like taking the trash out or carrying the groceries from the car were difficult.

Our annual family vacation to Cape Cod became challenging because some days I couldn’t make the 200-yard walk from the house to the water. I would stay back while the family went to the beach. The disease cut short many of our retirement dreams. My wife and I had planned to visit our granddaughter in Italy. We even laid out the itinerary, but my health was too fragile to take the trip.

We’d get invited to parties but standing and talking for long periods would cause me to lose my breath. It was embarrassing. This disease takes a toll on you both physically and mentally. I started playing the blame game. I thought to myself ‘no one did this to me but me.’ I just felt defeated.

There are not enough words to express how grateful I am for all the love and support my wife gave me while I was struggling with COPD. I was unable to do so many tasks around the house, that then became her job. Never did my wife complain, not even once. This disease is terrible for the patient, but makes life very hard for the caregivers too.

My golfing partner is a physician and he first told me about the Zephyr Valves while it was in clinical trial. We followed the progress of the trial and as soon as the valves were FDA approved, I knew I wanted to try them. I was denied twice by insurance, but my pulmonologist office appealed all the way to a third-party reviewer, and I was finally approved.

Life Before Zephyr^® Valves:

Before emphysema, I led an active life – bike riding, travelling, quilting, reading, boating! I grew up boating and camping and my family still boats often on Lake Michigan.

There were symptoms of breathing issues over the years, but by the time I saw a pulmonologist at age 54, I was told I had severe COPD/emphysema. Just two years later I was put on disability.

It leveled off a bit with medications. That was likely because I wasn’t working and had more control over my day. I could rest if I needed it.

In May of 2014, my husband was diagnosed with lung cancer. He passed away in November 2017. Then we had to move my mom into assisted living and she passed in early 2018. I was the executor of the estate. During those very trying years, my disease worsened. My oxygen use ramped up and it got to the point where I couldn’t do anything without it.

The things I loved doing, like boating and social activities, became so limited. Even if I went to a social event, I didn’t enjoy it as much. Everything was such a big effort and I’d have to have my oxygen on.

The mental and emotional toll was tough on me, but also affected my family who was very worried. My sisters kept an eye on me, especially after my husband passed away. My one sister told me I should get Apple Watch, which I did, because it alerts the medics if I fall.

One day I was watching the news and I saw Dr. Cumbo on TV talking about the procedure. I knew I wanted to try this right away. The next time I saw my pulmonologist she did a CT scan and sent it to Dr. Cumbo. I needed something and this was so much less invasive than surgery. I’d been waiting for years for something like this to come along.

Life Before Zephyr^® Valves:

I was a healthy kid. I played football, basketball, baseball, swimming, track, and more. In 1959, I went into the Airforce. I didn’t smoke when I went in, but then once you’re in, it’s “take 10 and light ‘em up.” If you didn’t smoke, you got put on some duty. So needless to say most of us started to light up. Fifty-five years later I quit smoking, but the COPD/emphysema had already taken over in my lungs.

He was in great shape except for this issue. We used to walk three miles a couple times a week, but then just walking upstairs in the house was getting hard for him. We couldn’t ride bikes anymore. It was really having an impact on our quality of life and I was worried about our future.” – Amy, John’s wife of 31 years.

About eight years ago, I caught a cold and it just escalated quickly. It was a steady decline after that. I went from being this active healthy guy, to struggling to breath with simple tasks. I couldn’t ride my bike anymore. Even doing yard work had become difficult. I would try to weed whack and edge the lawn, but I would have to use the rescue inhaler and stop often to rest. When you have to stop and lean over to catch your breath, you start to think “this may be my last breath.” It scared my wife and me.

I was not on oxygen yet but I was getting very discouraged at the decline I was seeing. On a trip last year I ended up in the ER having breathing treatments. My general practitioner, Dr. Cressa Perish, referred me to Dr. Steve White at University of Chicago Medical Center. He told me “it’s only going to get worse.” I told him I was ready to try something, even if it was a newer option.

In 2019, Dr. White introduced me to his colleague Dr. Kyle Hogarth who had studied the newly FDA-approved Zephyr Valves. Once Dr. Hogarth explained how the valves worked I was 100% ready to try them. He had to do some tests to see if I was a candidate, but I was hopeful that this would give me some of my life back.

Life Before Zephyr^® Valves:

Before emphysema, my life was full and wonderful. I was a registered nurse for over 30 years, raised four great kids, and now have 12 beautiful grandchildren who are truly my world.

I likely had been developing emphysema for over 20 years. For many years, I was treated by my primary care doctor. I quit smoking in 2010 but in 2011, at age 55, my breathing problems increased. That was when I first met with a pulmonologist and that meeting did not go well. My prognosis was very bleak.

This disease impacted every aspect of my life. I tried to continue working but I had to use FMLA leave often and finally had to go out on disability. Soon even the simplest tasks, like vacuuming, would completely wipe me out. If I cooked, I would be too tired to eat the meal.

I remember the first time I had to call the ambulance. I had spent a weekend with the grandkids at a waterpark and when I came home it felt like my breathing was just not working. A few years later the ambulance became a regular thing. Some of the paramedics knew me so well that they would start the protocol right in my living room. By last year I was on oxygen 24/7.

The mental toll of the disease was tough. My independence was slipping away. My daughter wanted to go to the State Fair and I had to rent an electric scooter. At the fair my oxygen ran low and things quickly progressed to panic mode. The ambulance came and my grandkids were so scared. It was just the last place in my life I ever wanted to be. I remember asking an ER doctor “Is this it for me? Is this the best my life will ever be now?”

About a year ago, my doctor said it was time to look at a lung transplant. As a nurse, I’d taken care of post-transplant patients and that is not a life I wanted to live. My respiratory therapist gave me an article on the Zephyr Valves and I brought it to my doctor. This disease was taking my life from me and I was desperate to find something, other than major surgery, to help me get it back.

Life Before Zephyr^® Valves:

Before my COPD diagnosis, I lived a very full life. We raised five kids. I was a mechanic for a glass company, a community fire chief, and I coached my daughter’s softball teams for many years. We were avid campers, too, and I was camping when I first noticed the symptoms of COPD. I started to get short of breath while setting up the camper. About five years ago, I landed in urgent care with breathing difficulties, and they suggested I should consult with Dr. Bansal at The Lung Center of Penn Highlands Healthcare.

I had quit smoking about seven years earlier, so the diagnosis was a surprise. We tried every medication you could think of to manage it, but my symptoms just kept getting worse. Just trying to sweep the floors would knock me out for the rest of the day. It got to the point where I had to do albuterol nebulizers three to four times a day, and I was using the oxygen just to get from the house to the car.

My whole life changed. It became so limited by this disease. I couldn’t go camping anymore because of the campfires. I couldn’t go to a ballgame because of the humidity. That was hard because I loved watching our Penn State team and my grandson play ball. It broke my heart to miss his games.

Two years ago, I was hospitalized with double pneumonia and went septic. I was in the ICU for five days. A month later, I was back in again with pneumonia. It was a very scary time.

My daughter and my son-in-law have been together for 10 years, and last September they decided to get married in March 2019. At my next appointment with Dr. Bansal, I told him that my daughter is getting married, and I have to be able to walk her down the aisle and dance with her without oxygen. He knew I was determined, and he suggested that we try the newly FDA-approved Zephyr Valves.

Life Before Zephyr^® Valves:

I had a very full life before COPD and emphysema. I was a real outdoors person. I loved to snow ski, camp, and fish. I was raised in Idaho in a mining family and we spent most of our time outside. We’d go to the creek and make damns and tree swings or ride mini-bikes and snow mobiles.

Growing up in a mining town had its benefits but it also meant I went to school very close to the refineries. The smoke would fill the playground so bad sometimes we couldn’t go out for recess. I was diagnosed with COPD and emphysema in 2008 at age 44. The doctors said that even if I had smoked a pack a day for my entire life, my lungs wouldn’t have been so bad at such a young age if I hadn’t been exposed to the smoke from the refineries as a child.

I was living in Nevada with its harsh winters. I kept getting bronchitis and that lead to my diagnosis. By 2010 my breathing really started to get difficult. Just going out into the cold air in the morning to get to work made my breathing difficult. In 2011 I moved to Arizona to get away from cold. It was a tough decision because my dear husband had to stay in Nevada for work, but my lungs could not tolerate that cold air anymore.

In the Fall of 2015 my primary care doctor finally sent me to a pulmonologist and I found out I was in the end stages of COPD/emphysema. They said I would be lucky to get 5 more years. It felt like my life was falling apart. I have full custody of my two granddaughters. I’m mom to them and at this point the oldest was just in preschool, but my outlook was not good. By 2016 I had to start wearing oxygen just to be able to function. My pulmonologist suggested I go on the transplant list, but I wasn’t ready for all that. My situation went from bad to devastating quickly. I couldn’t take care of my little girls. I felt like I was losing my identity. I couldn’t clean the house or cook. I couldn’t volunteer at the school. Everything that was dear to me was getting taken by this disease. I became very depressed. It is not easy knowing you are dying and worrying about who will raise your kids when you are gone.

At one of my appointments in the summer of 2018 my doctor said he would see me again in two months and I told him I didn’t know if I would make it that long. That’s when he sent me to Dr. Sue to discuss the Zephyr Valve treatment. Within a week Dr. Sue scheduled my procedure.

Life Before Zephyr^® Valves:

I had a very full life before COPD and emphysema. I worked full time, raised two sons, and enjoyed the outdoors. Before I was sick I loved to hike, fish, and garden. My husband and I would go to the Colorado mountains several times a year to hike. It was a good life.

My symptoms started in my 50’s but I was officially diagnosed with COPD (emphysema and chronic bronchitis) at 61. My illness impacted all aspects of my life. I went from living a full and active life to being so limited. Simple things like showering, cleaning my home, or walking across a parking lot became real challenges for me. My cough was very extreme and constant. I became very self-conscious about it. I’d cough so hard I would sound like I was choking. I knew it was uncomfortable for people to be around me. Invitations to social events became very scarce.

I tried to cope with medications like Symbicort™, Spiriva™, Mucinex™, albuterol and prednisone but still suffered with major breathing issues. I depended on oxygen at night. I never slept well and often woke up gasping for air. I had to have the rescue inhaler and nebulizer standing by. Even with all that medication, I was still hospitalized several times.

I was diagnosed as very severe and was given a life expectancy of just 2-5 years unless I had a lung transplant. When a doctor tells you what your expiration date is, well, that is very tough to hear. I got very depressed. But after several years of struggling with this physically and mentally, I decided that I was not ready to accept my expiration date.

I knew lung transplants are very expensive and tough to qualify for, so I started doing some research to see if there were other treatment options. That’s when I found out about the tiny Zephyr® Valves. I talked to a woman in an online patient support group and she told me how the valves helped her breathe easy again. She explained how doctors place a few tiny valves in the diseased part of your lung so the healthier parts of your lung can function better. I started to call local doctors right away because I was hoping this could help me too.