Life can be stressful, especially if you have a chronic disease. COPD, a chronic, incurable, progressive disease can bring on major compromises to your physical activities and to your emotional wellbeing. No wonder it is normal to feel stress when you have COPD! So what can you do? Let’s start by looking at some common causes of stress for anyone, with or without COPD.
- Common stressors
- The death of a loved one
- Loss of a job
- Financial problems
- Getting married
- Moving to a new home
- Taking care of an aging or sick family member
- Traumatic event such as a natural disaster, theft, or violence against you or a loved one
Most of these big stressors are unhappy events, but we also see that it’s possible to have “good” stress. Yet, sometimes doing something less monumental, such as attending a wedding or a graduation ceremony or visiting a new baby can still be stressful. Simply observing these life events can cause a change in your everyday routine - and maybe lead to a change in your life as a whole.
Lung transplant can be a wonderful thing. Certainly, as a transplant pulmonologist, I am potentially biased here! But a huge part of my job in evaluating patients for possible lung transplant consists of making sure this is the right thing for the individual patient. This includes remaining up to date in all aspects of managing lung disease, to making sure patients have tried – or been considered for – all of the wonderful new therapies that keep emerging for managing COPD (and other lung diseases). But it
also means making sure my patients are as best prepared as possible to undergo lung transplant.
I have always been curious whether things get lost in the shuffle from our patients’ perspective while we focus on making sure they are medically ready and fit for transplant. I recently asked some of my patients who have been transplanted for COPD what things stood out as important to them as they went through this process, and what they appreciated knowing beforehand as the progressed through their transplant journey.
The first comment a patient told me was actually one that I had told them during the early stages of their lung transplant evaluation – and no, they weren’t just trying to flatter me into thinking something I said resonated with them! “You are replacing one set of issues with another set of issues.” I think this is important for anybody with lung disease to remember going into transplant, not just people with COPD. Like any major surgery and certainly with the intensive immune suppression, we need to prevent rejection. Complications are always possible, albeit not insurmountable – sometimes you just need to have that mental grit to handle any setbacks along the way and overcome them successfully. As my patient succinctly put it, “You may have to go through quite a bit, but in the end you will get a substantial gain in your quality of life. You will be able to perform things you thought were no longer possible.” That is precisely why we do what we do.
I lost my grandmother from COPD (emphysema) when I was ten years old. I watched her progressively get worse over the years, and as a small child I didn’t understand why. My grandmother was in stage IV with a FEV1 of 27%. My last memory of her was in ICU on the ventilator. I held her hand and told her I would fight this disease so other families wouldn’t have to go through what our family did.
I dedicated my life from that day forward to bring COPD awareness to families and friends. I’ve developed many novel medical modalities over the years to help patients with COPD and I have participated in several clinical studies to understand the importance of exercise with COPD patients to improve their quality of life.
My greatest accomplishment has been being asked by the Wounded Warrior Foundation to take one of our country’s heroes, from the Vietnam era, to his class reunion at West Point. Our veteran was unable to walk greater than 10 feet at a time without becoming short of breath. Our veteran wanted to be able to walk across the stage at West Point and receive an award that was given to him by his classmates with dignity. At the time, I was with a company that created a one pound wearable ventilator that was uniquely designed to provide positive pressure that significantly increased patient’s tidal volumes and improved ventilation. Our war hero was able to walk across the stage and accept his award and give a short speech to the crowded room full of decorated soldiers, family, and friends.
Bill Clark, Senior Director of Community Outreach, COPD Foundation
The COPD Foundation is saddened to report that John W. Walsh, our founder and president, passed away on March 7, 2017 as a result of complications from an accident in 2016. How do you begin to memorialize a man who was a legend and hero to millions who suffer from chronic illness - not only in this country but around the world? A man who was a beacon of hope for those who once felt alone, a voice for those who felt no one cared, a man who gave a face to a disease that was once hidden, and a visionary who found solutions to problems no one could solve? How do you honor a man who reinvented how research is executed in the COPD space?
When diagnosed with Alpha-1 Antitrypsin Deficiency, a rare genetic form of COPD, along with his twin brother Fred, John did what he always did throughout his life- he looked for answers. A veteran and businessman, his search led him to walk away from his business and co-found the Alpha-1 Foundation, a patient organization dedicated to education and research. John’s efforts led to recognition of the disease across the world as other countries came to adopt the visionary guidelines established for the Alpha community.
Through national and regional conferences, along with dedicated support groups, John’s leadership and vision galvanized the Alpha community. It wasn’t long before recognition led to new and exciting research culminating in the development of the first effective therapy for Alpha-1. When John found that a shortage of the therapy was endangering the community, he co-founded AlphaNet, a groundbreaking non-profit disease management company whose “simple” goal was to improve the lives of those individuals affected by Alpha-1 while at the same time funding vital research for a cure, now totaling over 50 million dollars.
If you had a penny for every time someone asked you to explain COPD - would you be a millionaire yet? COPD, despite affecting millions, is not a household term. In addition to fighting for breath, our community fights for awareness, research funding, and access to life-saving therapies. But we are fighting.
Join the COPD Foundation as a State Captain to make COPD world-known. Help raise awareness by participating in social media challenges or write your elected officials to protect access to respiratory therapists. Looking to do even more? Some of our Captains serve on data safety monitoring boards for clinical trials and others even traveled to the nation’s capital to be a patient voice for the National COPD Action Plan. State Captains are needed in all 50 states, and whether you have a little or a lot of time, are homebound or a rolling stone, we have an activity for you!
State Captains help us organize locally so we can make change nationally, and this year there is much work to be done. We will be working with Congress, the National Heart, Lung, and Blood Institute (NHLBI) and the Centers of Disease Control (CDC) on the new National COPD Action Plan. For the first time ever, we will have a plan that maps out a path to address COPD by growing awareness, diagnosing it earlier and improving treatments, research and policies. We will need State Captains throughout the country to share the plan with their local officials, ask their members of Congress for implementation funds, and ask their members of Congress to support implementation of the plan and work with the community to help put the plan in motion.