Kristen shares what she and her team do at the COPD Foundation, what drives her and what advice she would give to people living with COPD or caring for a loved one affected by this devastating disease. Read on to learn more.

As the Vice President of Population Health & Care Delivery, Kristen and her team “connect patients and healthcare providers to resources that can improve their lives and healthcare delivery, respectively.”

“Every day,” explains Kristen, “we interact with a variety of individuals—physicians and respiratory therapists, nurses and pharmacists—and people with COPD and those who care about them deeply. I’ve been with the COPD Foundation (COPDF) for 2.5 years and it’s an honor to do this work every day.”

She first learned about COPD when a family member told Kristen her father had been diagnosed with emphysema. “I will never forget that moment. I felt dazed and scared.”

Her father had a lot of support, though, says Kristen, and this made a big difference in his quality of life. “Thankfully, my father had an invested and supportive care team who ensured he used the medications that worked best for him, referred him to pulmonary rehabilitation and, when appropriate, end-of-life care.”

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When Karen Anzalone lost her father to COPD in November 2010, she knew she had to do something to help others. Today the memory of her father, John Ferrara Jr., inspires her work as the New York State Captain, a C.O.P.D. Information Line Associate and grassroots advocate. She remains a passionate member of the COPD community because she doesn’t want patients and caregivers to feel the way she did in her search for education about the disease.

For eight years, Karen’s father, John, a retired Navy flight engineer, had a chronic cough and breathing problems. When he had to catch his breath for 20 minutes after walking a short distance, he agreed to see a doctor. His own father lived with COPD so John was familiar with the disease and knew just how debilitating it was. When he was finally diagnosed, John wasn’t given much information on how to manage his COPD. That’s when Karen stepped in as her father’s primary caregiver and advocate.

Education is Key
Karen believes that education is the key to living a full life with COPD. “Often, patients are provided with their diagnosis and have limited information to best manage their disease. If my father and I had had more education it would have changed our situation dramatically because I would have been able to ask the doctor the right questions, especially regarding pulmonary rehab.”

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Because of everything he has been through, Orlan does a lot of advocacy work with the COPD Foundation. He is COPD State Captain for Indiana, co-chairs a support group, sets up around 25 health fairs a year and speaks at local universities about COPD. Read on to learn more.

Orlan was diagnosed with severe COPD and disabled when he was 52 years old. He was put on oxygen 24/7 with an average FEV 1 of 16 percent. “I went from working full time to being totally disabled in 13 days.” After many years of hard work, he received a double lung transplant.

Like many individuals with COPD, Orlan’s life changed with his diagnosis. “I learned I couldn’t do most of the things that I used to—it was an effort and a struggle to do anything. I had to rearrange my whole house so I could get things easier. I had to learn to do things more efficiently and slow down. I learned that if I took care of myself this wasn’t a death sentence but an opportunity for me to live and maintain quality of life for my final years.”

Told that pulmonary rehab would help, Orlan started “going to it. It made an amazing difference in my life. Not only did I become stronger but I also made new friends.”

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Whether you’re an individual living with COPD, a caregiver or healthcare professional, education is key. Having the right educational materials is essential and that’s a responsibility Jane truly takes to heart. Read on to learn more.

As the Assistant Director of Education for the COPD Foundation (COPDF), Jane’s role covers all things education – whether it’s for patients, caregivers or healthcare professionals. Having the right materials and making sure these materials get in the right hands is no easy feat, but Jane approaches her role with determination, creativity and honesty.

One of Jane’s key responsibilities is to update existing educational materials as well as coordinate the creation of new ones. Most recently, Jane updated the “1s, 2s and 3s of COPD” resource and created the new “1s, 2s and 3s” resources for bronchiectasis and nontuberculous mycobacterial (NTM) lung disease.”

Additionally, she works with “my colleagues on the Care Delivery and Harmonicas for Health teams to offer materials and programs to help improve the lives of all people affected by COPD. Our team is currently working to develop a more robust training program for Harmonicas for Health leaders. I also write some of the blog posts for PRAXIS and articles for the COPD Digest.”

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Edna is a retired registered nurse and respiratory therapist, a Board member of the COPD Foundation, and an individual with COPD. Edna wants to share her story to give others an idea of what it’s like to have COPD and ask for support to help us turn the tables and eradicate this disease.

It’s difficult for me to comprehend that while COPD affects 30 million people in our country there are millions out there who don’t know its name or are suffering because they don’t know that they have it. Worse still, COPD is the third leading cause of death, but receives the least attention and funding.

When I was diagnosed with COPD, I already knew it. I was getting worse every day and of course I knew I absolutely had to see a doctor. But in all honesty, I was too ashamed to make the call.

My symptoms began with shortness of breath while doing things I never thought twice about—sweeping leaves off the porch, carrying groceries up the stairs or taking my dog for a walk. Basically anything requiring exertion or stamina was no longer an option.

COPD robbed me of my career and my income. I loved working but simply could no longer hide the fact that I couldn’t keep up the pace. I also miss the things my husband and I did together. We traveled, loved whitewater rafting and got to be pretty good at golf. Can you imagine how difficult it is for a spouse who has no experience dealing with a loved one who can’t breathe, has panic attacks and is getting worse every day?

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As a 34 year old career woman and mother of two children under the age of 5, life is non-stop. My husband is a middle school teacher and a football and track coach, and I am a full-time college instructor. A few years ago, I noticed that I constantly felt like a book was sitting on my chest, but pressed on, ignored it and attributed it to East Texas pine tree allergies. I didn't even know there was a chronic issue until I went in for a CT scan because of a kidney infection. I'm thankful I did, because the radiologist noticed changes in my lungs over the last year.

The radiologist compared my CT scan to a scan the year previous, and labeled it as "worsening emphysema, potentially COPD." Having never been a smoker, I knew that emphysema wasn't truly the problem. So, my primary care physician assistant referred me for pulmonary testing (which was quite a brutal test by the way) and I was referred to a pulmonolgist. I decided to do some peer-reviewed article research, as I was a 26 week preemie with bronchopulmonary dysplasia. I found some interesting information, and have now found that my doctor believes my condition is likely a result of my prematurity.

I was diagnosed with COPD officially in September of this year; aged 34 and never having been a smoker. My pulmonologist has been excellent and despite that my life now involves multiple inhalers and nebulizers, I am feeling so much better, and my O2 SATs are in the 96-97 range instead of the 83-93 range. I'm so thankful for medical management options.

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Jan Cotton had an exciting and adventurous 30-year career with Trans World Airlines until 15 years ago, when she was diagnosed with COPD, a chronic lung disease in which the airways become obstructed, making it harder to breathe. Now Jan serves as a leader in the community as a Governing Board Member of the COPD Patient-Powered Research Network as well as the COPD State Advocacy Captain of Illinois. While it has been an arduous road, Jan shares her journey of triumph below.

Jan was diagnosed with COPD in 2000 at the age of 51. Plagued with frequent chest colds for much of her life, Jan has no doubt that she lived with the disease long before she was diagnosed as growing up her mother “...was a smoker so the second-hand smoke contributed to my illness.” 

Once diagnosed, Jan was told she would have ten years to live by her doctor. She was devastated. Not willing to give up hope, Jan “sought great care from one of the top hospitals in the country. There I received the drugs I needed but not the information I needed – that all came later.”

Jan was still very active during the time around her diagnosis. Despite challenges in walking to classes on campus, she completed her Bachelor’s degree and began working on a Masters. Additionally, she was a substitute teacher in four school districts. “I still had not processed the diagnosis and did not know how to deal with it.”

COPD also had a major impact on Jan’s emotional health, “I was so depressed and feeling sorry for myself.” Her emotional state prompted her to surf the internet to look for any help she could find. There she discovered the COPD Foundation and a number to its hotline. “The game changer for me was the phone call to the C.O.P.D. Information Line," says Jan. She initially made the call in an attempt to find sympathy, but after the conversation she was offered a job. “The agent heard something in my voice that led her to believe that I was a fighter, and she was correct."

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Kandy’s breathing issues started when she was just a child. It took many years for doctors to diagnose her with COPD. That’s why she became an advocate. Read on to learn more.

As a young child with severe asthma, Kandy remembers many trips to the hospital with an oxygen tank in the back seat. Doctors told her parents she wouldn’t live past the age of 10. “The asthma gene is strong in my family, going back to my great-grandfather.”

Throughout her lifetime, Kandy suffered many critical health issues but she got through them. From the 1960s through the 1990s, she started having bouts of chronic bronchitis and pneumonia. In the early 1990s, she saw an allergist and pulmonologist; they both gave her 10 years.

As Kandy aged, her asthma worsened and “overlapped into COPD”; she was officially diagnosed with COPD at the age of 46. In 1997, Kandy got very sick and “was told by my doctor to get my affairs in order and sent home with oxygen. I’ve often wondered how many years my COPD went undiagnosed because doctors thought it was asthma. My father had emphysema too, which overlapped with his asthma.”

During this time Kandy was working for the state of South Dakota. When she moved, she “started doing respite care which I had to give up due to my lungs getting worse. I lost a relationship due to my COPD…it’s so hard for people to understand this progressive illness.”

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Being a COPD patient brought on Tina’s passion for advocacy. This led to raising awareness through stories and a video and becoming the COPD State Captain for Pennsylvania. Read below to learn more about Tina and how she’s coping with living with COPD.

Tina worked in a factory and was a heavy smoker. She always wore an mp3 player and when she would sing along she kept becoming short of breath. Her diagnosis went from a breathing test to a CT scan which showed emphysema. She quit smoking cold turkey at the age of 44 and her son, Rob, quit with her. She is now 52 and has been smoke-free for eight years as of October 8th of this year.

Tina continued to work in the factory until it closed. She eventually became more short of breath. “Chores at home took me all day, chemicals bothered my COPD as well as people’s cologne and perfume.” She now works part-time as a customer service member/cashier in a grocery store.

A COPD diagnosis can be devastating for the individual affected but also the family. In Tina’s case, “my family stood by me. We all had our emotions when I got my diagnosis. We don’t talk about it much but we know the dangers that can lie ahead.”

Tina’s current treatment consists of “a [daily inhaler] I also have a rescue inhaler and nebulizer when needed.”

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By Russell Winwood, COPD patient and marathoner

It can be confusing and scary when you first find out you have chronic obstructive pulmonary disease (COPD), which is the fourth leading cause of death worldwide and is estimated to be the third leading cause by 2020. Even more surprising – and scary – only about half of the estimated 210 million people with the disease have been officially diagnosed. Common symptoms of COPD are shortness of breath, wheezing or a chronic cough, as well as chest tightness. Unfortunately, some people avoid getting diagnosed due to lack of awareness and social stigma and most people wait too long for diagnosis, with the majority of people not being diagnosed until they have already lost half of their lung function. COPD is among the most common, underdiagnosed, debilitating, deadly and costly diseases to manage, and for those who have recently been diagnosed, it can be difficult to figure out how to manage this life change.

Often recently diagnosed patients and their families can be taken by surprise – they might not know what COPD is, what it means for their future or how the diagnosis will impact their ability to stay active. Before my diagnosis, I wasn’t familiar with COPD and I had a hard time coming to terms with what it meant for my future; however, with the support of my family, I was able to achieve my goal of completing my first Ironman just six months after my diagnosis. I always encourage people in similar shoes to define their own Ironman - whether it’s joining a local gym or even walking the dog every day, set an activity goal and work toward it.

For recently diagnosed patients, I won’t lie: my transformation from recently diagnosed COPD patient to getting back into my active lifestyle didn’t happen overnight – but if there’s one takeaway I want to share with those dealing with a new diagnosis it is that COPD doesn’t need to stop you in your tracks. I hope that in sharing my personal journey and through my work with Philips, I can encourage other COPD patients to live an active lifestyle and to continue to enjoy their favorite activities.

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No matter where you live or what you do, Shane’s story reminds us that COPD is a disease that affects individuals all around the world. Read on to learn more about Shane and how this horrible disease has affected him and what he’s doing to live a full life with COPD.

Shane was born in Adelaide, South Australia. At an early age he developed asthma, which he inherited from his mother, a chronic asthmatic. When Shane was 7, the family moved to Melton on the Yorke Peninsula, approximately 124 kilometers north of Adelaide.

“We moved there in hopes of improving our health. While living there we had very little problems with our asthma, not like it was in Adelaide.”

Shane started smoking at the age of 11. When he was 48, he had to have a chest X-ray as his asthma was getting worse. He then found out he “had a touch of emphysema. I should have listened to my mum and doctor and given up smoking. But I didn’t listen. I eventually stopped smoking with I was 52 when I was diagnosed with Stage 1 COPD.”

In February 2017, Shane’s COPD “hit rock bottom. I was rushed to the hospital in Maitland where I live, also on the Yorke Peninsula. I spent one month in hospital but because my breathing became critical and I had to have oxygen full time, I was flown by the Royal Doctors Flying Service to the Queen Elizabeth Hospital in Adelaide.”

While there, Shane had many tests including a lung function test, which showed him how severe his COPD really is. “My lung capacity is now down to 30% and my right lung is not working at all.”

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Elizabeth shares with us the story of her mother who was diagnosed with COPD when Elizabeth was a teenager. Living in a rural area, access is limited. Her goal is to improve access and increase research funding, so that more programs and treatment options are available and accessible to all, no matter where you live.

“Devastating but not all that unique” is how Elizabeth describes her mom’s story of living with COPD. “She lives in a rural area in western New York with almost no access to any programs. The respiratory therapist she saw came to the area once per week and she only saw him a few times. There are some programs in Rochester but that is an hour or so away. My mom cannot drive anymore, so this is a huge challenge. She suffers from depression because of the illness and has sought treatment for that as well.”

Elizabeth’s mother was diagnosed with COPD when “I was very young, around 14. She was very quiet about it. I just knew she coughed a lot and sometimes had a hard time going places. At first it was barely noticeable but, as I grew older, it worsened and I began to notice more and more. After I moved away, I would visit and really notice the changes that had seemed so gradual before. I believe her COPD was mild to moderate at the time of diagnosis.”

A stay-at-home mom, at first “my mom still tried to do everything”, however, COPD decreased her social activity “but not that much until the last 5 years. Nowadays, she can’t really go into stores and will wait in the car while my dad goes shopping. She usually goes to family members’ houses just for holidays and things. Otherwise she stays home. Sometimes she won’t even feel comfortable going very far into the backyard, depending on air quality.”

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