Holly’s story—in her own words…

Everyone tells me that I should write a book.

People often tell me what I have accomplished despite the COPD is amazing. I just think I am making the most of what I can do for my health now to avoid what I have been told is needed in the near future—a lung transplant.

Here my history is and how it affected me. Maybe it will help another person who has lung disease.

The History of Her Illness

To start at the beginning, my father was a heavy smoker, as were so many people during the 1950’s, 1960’s, and 1970’s. He started smoking when he was a young man, smoked until he was in his 60’s, and died of emphysema at age 71 in 1997. As a little girl I can remember watching TV sitting by his side—there was always a cigarette in his hand or burning in an ashtray.

Allergies

Ever since I can remember I have had allergies to trees, pollens, house dust, etc. At times I have taken allergy shots, just as I do now. I was always a child who was susceptible to respiratory illnesses, like colds and flu. A respiratory infection always seems to have been an annual occurrence.

Smoking

I began smoking when I was sixteen. It was the cool thing to do in the 1960’s, 1970’s. I smoked heavily during the 1970’s, 1980’s, right up until 1992. I was 40 years old when I finally quit. It had taken me about six or seven years from the time I had been told I had COPD until I was able to quit smoking.

Respiratory Infections

When I was in my mid thirties, I had a respiratory infection and went to see my family practitioner. He told me at that time that I had COPD and I just scoffed at him. I remember telling him, "Do not say that! Only old people have COPD." Well, I was wrong.

First Major Breathing Difficulties

In 1988, my husband and I had moved into our first house. Our yard was completely empty and we had to bring in topsoil, mulch, plants, grass, and trees. The first or second year we spread fertilizer in our yard. It was windy that day, and I must have inhaled dust as we spread it. By the next morning I was having trouble breathing. I remember staying home from work and sitting at the kitchen table, smoking, thinking that the breathlessness would go away. I went to the doctor and he said it was a reaction to the fertilizer affecting the COPD. They treated me with antibiotics and inhalers, and that was the beginning of the medications I have been on ever since.

Quest to Stop Smoking

I tried to quit smoking so many times, in so many different ways. Classes from the American Cancer or American Lung Society, fake cigarettes, whatever was out there. When the nicotine patches came out on the market, I got a prescription and started using them. They helped me deal with the physical addiction to nicotine, and I was then able to slowly handle the emotional and mental aspects of smoking, and finally quit. However, by then the lung damage was done and couldn't be reversed.

Acute Respiratory Distress

Eventually my lung disease seemed to get worse. Each winter my respiratory infections would be more and more debilitating. I was in the hospital three times in just one month! They would give me oxygen, treat me with nebulizer treatments around the clock, get me stable, and discharge me. A few days later my lungs would close up again and back to the hospital I would go. For a 41-year-old person this is a terrifying situation. It was during this time the doctor suggested that I "get my affairs in order” because I was going need to have a lung transplant.

Stabilizing the Disease

Steve and I decided to take things into our hands and become more proactive in my treatment. This was our only choice, because by this time I was so debilitated that I couldn't drive, could only walk a few steps into a doctor's office, and my husband had to help me shower and dress. We went to see a new allergist, Dr. Robert Jacobs, who specializes in allergy and immunology. Steve had to explain my history with him because I did not have the breath to talk. He started me on three different inhalers, an at-home nebulizer machine, a nasal spray, and allergy shots. He gave me a nebulizer treatment in his office that was so amazing, I could breathe! After several years, Dr. Jacobs referred me to a pulmonologist, Dr. Nora Walker, and between them they have helped me manage the COPD.

Help Through Exercise and Medication

The most important discovery I made was exercise! Nutrition, vitamins and the prescription drugs are important, but exercise has really been the key to having the strength to tackle this disease and make the best of my life.

After I started seeing Dr. Jacobs I had a difficult time getting back on my feet. One morning I was sitting in my living room and an exercise show came on TV. I got up, held on to the chair, and slowly began following the exercises. The music and the exercises were high energy, but I slowly raised a leg up and down, then the other one. It was an exhausting process but after exercising every day for a few weeks, there was a real difference in my ability to move around. The combination of a great doctor, appropriate prescription medications, and my stubbornness and willingness to do something for myself all came together. It takes a lot of discipline to exercise, but it is worth it. When I thank my doctors for all they have done they tell me that I have done a lot for myself as well, and that is what has helped me the most.

Advice For Others

If you are struggling with breathing problems, I know that it is a very frightening and debilitating process. You need to do your homework and due diligence. If you are not happy with your doctor, find another one. Look for a doctor who listens to you, someone that you connect with, and make sure that the drugs you are taking really make a difference in your quality of life. Then get up, look for an exercise program, equipment, and/or trainer who can really help you. That is really my message. Maybe one small part of my experience will help you, and that is worth it! Look around in your city and find the doctor, the exercise program or trainer, and the pulmonary rehab facilities that are available. All of these facilities have something to help you live longer and breathe better. You need to work closely with your doctors. Be proactive in your disease! It will make a difference.

Breathing Exercises and Pulmonary Rehabilitation

Breathing exercises are good for building up ease of breathing, improving movement of air in and out of the lungs, strengthening respiratory muscles, improving control of breathing, and increasing the use of the diaphragm as the major muscle of breathing. These exercises will make a difference. There are pulmonary rehab programs that have a lot to offer you because they can show you how to start an exercise program with various types of exercise equipment such as treadmills, stretching, and weights, and often they teach breathing exercises. (From Mark W. Mangus, R.P.F.T, R.R.T., R.C.P., Santa Rosa Pulmonary Rehab Center, San Antonio, Texas).

Hints for Living a Better Life

Get a disabled placard or license plate for your car. Use it when you aren't breathing very well, but when you are having a good day park away from a disabled parking slot and walk the distance to help exercise your lungs and body.

Try to do as much as you can on your own. Don’t automatically ask for help if you can do it yourself on some days. Getting up and slowly taking care of something yourself helps keep your body strong and keeps you independent.

Try different exercise programs. Each type of exercise does different things for you and has different goals. Treadmills are good for building up ability to walk longer distances. Working out with free weights is good for building muscle mass and strength. Doing aerobics helps with endurance.