Mary and I teach classes on “Living Well with Lung Disease” to pulmonary rehab patients, to caregivers, to patients at COPD conferences, and to anyone else who will stand still long enough. As a part of our presentations, we talk about the progression of lung disorders, principally COPD. Chronic Obstructive Lung Disease, as you likely know, covers Emphysema, Chronic Bronchitis, some types of incurable Asthma, and other diseases such as Bronchiectasis. The commonality of all of these diseases is that they are progressive, and they are incurable. Most of them progress slowly, which usually results in delay of accurate diagnoses until late in the disease stages. COPD has 4 stages.

Stage 1 is very mild, and the only symptoms are usually a cough, a bit more mucus, and minor shortness of breath with heavy exertion.

Stage 2 is evidenced by more coughing, more mucus, and increased shortness of breath with exertion. It is usually in late stage 2 or early stage 3 that the patient is finally diagnosed. The increased weakness of the lungs results in lung infections, pneumonias, and the like, which drives the patient to the ER, to the hospital, or to the doctor’s office, where they are hopefully subjected to pulmonary function testing. It is that testing that will tell the physician and the patient whether the lung weakness is the result of COPD, and if so, how advanced it is.

Stage 3 and Stage 4 usually are accompanied by medical treatment, whether it be medication, pulmonary rehabilitation, or other approaches. The patient is most susceptible to repeated “exacerbations”, pneumonia and such, in the later stages, due to the deterioration of the alveoli, the microscopic air sacs where oxygen is absorbed into the blood stream and carbon dioxide is expelled into the lungs to be exhaled. In addition, the later stages usually bring increased obstruction of the bronchial tubes, the passages that carry air to the alveoli, because of swelling, inflammation, or mucus. It is in these stages that supplemental oxygen is usually prescribed, initially for sleeping and exercise, and ultimately 24 hours a day.

That is the bad news!

Now for the good news…. The COPD patient may feel that they have lost control of their lives, and that is an understandable feeling. However, and it is a big however, the truth is that they have a great deal of control over the progression of their disease. It all comes down to choices! They may choose to get their diagnoses, go home, sit down, and wait to die. Harsh to say, but sadly many folks take that approach, and it becomes a self-fulfilling prophecy. If a patient chooses to simply give up and allow the disease to progress, that is exactly what is going to happen.

If, on the other hand, the patient chooses to fight, to get all stubborn and do whatever they can to delay that progression, the results can be dramatic. The secret is to avoid the exacerbations. If the patient is compliant with medications, a decent diet, an exercise routine, and a decent attitude, they will find that they can remain strong enough to help resist the infections and the other lung diseases. The longer the exacerbations can be held at bay, the longer the patient can remain at a certain level of lung function. When I was diagnosed, my lung function was 33% of what it should have been, given my age, weight, etc. That equates to high stage 3, near Stage 4. Not good, but I was able to maintain that 33% for almost 10 years by taking my meds, watching my weight, and logging many, many miles on a treadmill. I also used oxygen for sleeping and especially for exercising. I learned early on that low oxygen saturation in the blood can lead to heart and brain damage. Several of my friends pointed out that I had very few brain cells to spare, so I needed to be careful.

During the years that I was able to maintain the 33%, I was able to avoid pneumonia and other lung disorders. Finally, I got hit with a nasty case of double pneumonia, landed in the hospital, and went home weak as a baby. For about a week, it literally took me an hour to get out of bed, get to the bathroom, get dressed, and make it to my chair in our living room. On oxygen. I finally expressed an oath which shall not be printed here, drug my body out to the room that held our exercise bike, and did 5 minutes. With two stops to recover.

The next day, I did 7 minutes. It took me about a month and a half, but I finally was able to get back to my former levels. It was hard, it seemed impossible at the time, but I did it. Unfortunately, after my next exacerbation, I was unable to fight back to the 33%. I dropped down a few percentage points, but I kept up with the compliance and stayed at the new level for quite a while. This is the experience of many of us who have the attitude, the will, the stubbornness to fight, to continue the exercise, to wear our oxygen.

I compare the progress to a set of stairs. Each time an exacerbation hits, it drops our lung function down a step. It is possible to fight our way back to the former levels, but it is very, very hard. Most of us will stay at a lower level. A step down. Then, we can continue to fight, stay strong enough to ward off the next exacerbation, the next step down. Logically, the further apart we can keep those steps, the longer we can go between the drops, the exacerbations, the better we will feel, the greater will be our quality of life, and, frankly, the longer we will live.

So, we possess the power to control our disease to a great extent. Again, the choice lies with us. I urge you to reach down, find the attitude, the stubbornness, the will to do the things that we know that we should do. It may not be easy, but I believe that you will thank yourself for making the effort.

All the best,

Uncle Jim

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