Ron Peterson chronicles his battle with emphysema and his pledge to help patients cope with the disease.
In October 1987, I was diagnosed with a moderately severe, nonhereditary form of emphysema. I was devastated. It was then that I decided to find out more about the disease, and dedicate myself to helping people with emphysema.
In June 1997, new hope was given to patients as researchers reported that the effects of emphysema had been reversed for the first time. I am one of those patients who has been given hope that a cure is on the horizon. This is my story on how I am successfully fighting a 12-year battle against this disease through pulmonary rehabilitation.
After the diagnosis, I found that my biggest challenge was trying to quit smoking, which my doctor adamantly suggested. I eventually did stop smoking–9 years after I was diagnosed (that is 36 total years of smoking). Although I had been physically active for most of my life, exercise had become extremely difficult because of my smoking habit.
Finally, in January 1996, I successfully quit smoking and was able to get serious about exercising. I started the process slowly, sometimes walking on a treadmill for only 2 minutes a day, and after 1 year, I worked up to 60 minutes a day–every day. In addition to walking on a treadmill, I stretched and worked on my upper body with weights. This helped build strength and keep my joints limber.
Staying smoke-free has been easier since I started my exercise program, and my health has improved drastically. In more than 3 years, I have had only two minor lung infections, which were completely eliminated by antibiotics. Sometimes I can feel my body become weak with an infection. After exercising, I can actually feel that the infection has been eliminated from my lungs. I think it is easier to breathe deeply and use all of the remaining sections of my lungs because I exercise. In November 1996, I began using supplemental oxygen during exercise. I had not been using oxygen because my blood oxygenation level at rest was at 93 percent. After visiting my pulmonologist, he determined that oxygen use during exercise was necessary, and checked the amount of oxygen in my blood with a pulse oximeter. My blood saturation level had dropped to 82 percent. When outdoors, I use a unit that dispenses oxygen when I inhale. It weighs only 8 lbs, fits in a backpack, and supplies almost 2 hours’ worth of supplemental oxygen. When at home on the treadmill, I use a concentrator unit.
In February 1997, I was evaluated for lung transplantation. My FEV1 at that time was 18 percent of normal. After 11¬2 years of waiting for a donor, I was doing so well, thanks to my strict exercise program, that I voluntarily deactivated from the program with my doctor’s approval. My lung deterioration had virtually stopped. As of April 1998, my FEV1 was still at 18 percent of normal.
Although my lungs have sustained significant damage, I have the breathing capacity to exercise at a heart rate as high as that of a person without lung damage–as long as I start slowly and increase the intensity gradually. To help monitor the intensity of my workout, I purchased a heart rate monitor. A strap around my chest senses my heart rate and transmits the information to a digital readout that is attached to my wrist, helping me to determine when I should speed up or slow down.
My elixir for keeping my body healthy begins about 2 hours after I wake up each day. The only food I have before my workout is 8 ounces of hot water mixed with 3 teaspoons of vinegar, 3 teaspoons of honey, an apple, and vitamins. I believe the reason my body feels better after eating such a light breakfast is because oxygen is not being used to digest a heavy meal. When exercising, the body exerts more energy and therefore, more oxygen is needed to supply the muscles, tissue, lungs, etc.
To prevent sore muscles and prepare my body for a workout, I stretch for 5 minutes followed by another 5 minutes of walking slowly on the treadmill. Then, I increase the intensity on the treadmill and continue for 1 hour. I never jog. A slow, consistent, steady pace is the key. I enjoy walking outdoors the most because I like the scenery. However, I get a better workout on the treadmill since my heart rate increases about 20 to 30 beats per minute. I then cool down by walking slowly and finish with a set of stretching exercises. I also have an upper-body program that I follow every other day. That routine consists of 14 exercises that involve 2-lb barbells.
The best way to begin an exercise program for patients with emphysema is to attend a pulmonary rehabilitation class, which consists of exercise instructions, breathing techniques, and other topics. I was unable to get into a pulmonary rehabilitation program because the wating list is extremely long. Instead, I began my own program with my doctor’s permission. The key is to start very slowly because the muscles are deconditioned. It is very important to listen to your own body and get your doctor’s approval before starting any workout program.
Breathing techniques also play a vital role in rehabilitation. To provide an example, I have broken down my breathing techniques into four steps: inhaling through the nose, inhaling while expanding the stomach, exhaling through “pursed” lips, and breathing as slow as possible. Inhaling through the nose is important to warm and filter the air before it gets to your lungs. Inhaling by expanding the stomach brings in more oxygen to the lungs. It is not as easy as it sounds, and takes a lot of practice. I suggest practicing by lying on your back and putting a small book on your stomach, then raise the book as you inhale.
The desire to rescue my body from the ills of smoking through disciplined exercise was not enough. I wanted to help people who were having problems coping emotionally with the disease. I became involved in organizing several support groups throughout the years. One in particular, Second Wind, is an international support group organization for which I sit on the board of directors. At Second Wind, we do not discuss much research that is taking place; instead, we focus on the individual. We help people deal with feelings of denial and talk about how to overcome problems. The organization also encourages caregivers of emphysema patients to participate.
In Fall 1997, I produced a video entitled “Maintaining Your Health with Lung Disease,” which chronicled extraordinary battles that emphysema patients are fighting–and winning. Thomas L. Petty, MD, professor of medicine at the University of Colorado Health Sciences Center, Denver, and chairman of the National Lung Health Education Program, gives the introduction on the video. The video will be distributed in Spanish and French in the near future. I also have a Web site, www.geocities.com/hotsprings/spa/7154/ that provides updates, inspirational stories from people who have benefited from exercise, and information on resources and support groups.
Today, I am feeling great. According to my CT scans (I undergo a CT examination every 6 months) and pulmonary function tests, my lung deterioration has stabilized. The medical profession claims that the only way to halt lung deterioration permanently is with lung transplantation–however, a lot of people with emphysema are coping better through exercise and some believe that it is prolonging their life, if not halting the disease in its tracks. One day, the medical community will provide a cure for emphysema–maybe even sooner than we think. Until then, I’ll be waiting–on my treadmill.
Ron Peterson is an emphysema patient dedicated to helping people with emphysema. He sits on the board of directors for Second Wind, an international support group for emphysema patients.
Quality of Life Improving with Pulmonary Rehabilitation
According to a study published in the Journal of Cardiopulmonary Rehabilitation1, significant increases were reported in FEV1 reducing dyspnea. Forty-four patients participated in the study that consisted of 11¬2 hours per week of supervised education, breathing training, and upper/lower extremity exercise. The increase in FEV1 and respiratory muscle strength appeared to contribute to the reduction in dyspnea, proving that pulmonary rehabilitation can improve quality of life.
Mary Burns, RN, who began working in pulmonary rehabilitation more than 22 years ago, is the executive vice president of the Pulmonary Education and Research Foundation (PERF). She is an advocate of pulmonary rehabilitation and has seen firsthand the benefits to patients.
“Emphysema is now being considered a multiorgan disorder because it affects the muscles as well as the lungs. Exercise can make dramatic improvements in muscle function,” Burns says.
Thomas L. Petty, MD, professor of medicine at the University of Colorado Health Sciences Center, Denver, and chairman of the National Lung Health Education Program (NLHEP), also agrees that pulmonary rehabilitation can help patients improve quality of life.
“Pulmonary rehabilitation does not improve lung condition, but it may improve muscle function, enhancing oxygenation of tissue, and helping patients tolerate dyspnea,” Petty says. “There is some incomplete evidence that pulmonary rehabilitation may slightly prolong life, but it mostly improves quality of life.”
1. Ramirez-Venegas A, Ward JL, Olmstead EM, Tosteson AN, Mahler DA. Effect of exercise training on dyspnea measures in patients with chronic obstructive pulmonary disease. J Cardiopulm Rehabil. 1997;17(2):103-109.