In her own words: living with emphysema
Sandy, a 50-year-old woman, is married with three grown children. She started smoking at age 14, and continued until age 48. She quit for a full year, but has recently started smoking again. She says that one cigarette was all it took to fall back in. Right now, she is struggling to quit again. She is retired because of her emphysema.
What was your first sign that something was wrong? What symptoms did you experience?
My first sign was being short of breath. I had been short of breath for years, but it became much worse over two years ago. I found it increasingly difficult to climb stairs or walk for any distance. I noticed that I could not even walk a whole city block without having to stop and rest. Surprisingly, it was after I had quit smoking for a month that I really noticed an increase in my shortness of breath. It was strange to me that I was more short of breath when my expectation was that I would be breathing easier.
What was the diagnosis experience like?
I saw my primary care provider first. I wasn’t referred to a specialist right away. My doctor felt that I probably was in the early stages of emphysema, and decided to treat me first with medication and inhalers. He didn’t feel that my condition was severe enough to require a specialist. I wasn’t completely happy with that, but felt that he must know what he was talking about. It wasn’t until eight or nine months later, when I had a cold and possible lung infection that I was referred to a specialist, and given a pulmonary function test (PFT). When the tests results came back, my primary care doctor admitted that he had not realized how bad my condition was.
What was your initial and then longer-term reaction to the diagnosis?
My first reaction was, ok, so what do we do about this. I wasn’t told that the disease was not reversible and that it could be deadly. Therefore, at first I wasn’t too awfully concerned. Now that I have been diagnosed and have researched emphysema, I have learned that this is a serious, progressive disease, and usually fatal. Now, I look to the future in a much different way. I am nervous, scared, and still to some little degree in denial that this is really happening.
How do you manage your disease?
I am currently seeing a pulmonary specialist. (This is my second pulmonary specialist; I was not happy with the attitude of the first specialist, so I switched.) I am seen every three months and usually have a spirometry done in the office. I am on three different inhalers: Advair, Combivent, and Flovent. I also use Accolate twice a day and I keep Prednisone on hand for flare-ups. I have had blood work, chest x-rays, and a dobutamine stress test. Next month, I will have a CAT scan on my lungs to see what kind of condition they are in.
Currently, I am operating at 30% lung function, and the doctor has told me that this is as good as it gets. I have been fortunate to not need supplemental oxygen yet. Recently, the doctor has mentioned the word “transplant”. He explained that at 50, I am young enough to endure a transplant. By the time I’m 60, I may have only 15% lung function left.
I am also taking an anti-depressant. So you can see that this illness has caused some stress and depression.
Have you made any lifestyle or dietary changes in response to your illness?
I have made several changes: I quit my job in August 2000 because I couldn’t continue my duties in the shape I was in. I’m no longer able to carry anything of any weight for any distance, which includes carrying laundry baskets up two flights of stairs.
In terms of diet, I try not to eat so many carbohydrates, because they tend to make me more short of breath. Other than that, I have no real dietary restrictions.
Did you seek any type of emotional support?
I have a good support system in my husband and children. My oldest daughter is a critical care nurse, and is very helpful in terms of understanding and explaining what the doctor prescribes, and running interference if I need it. My friends are also very supportive.
Did/does your condition have any impact on your family?
My family pitches in more now with the household chores. My husband and sometimes my children do the grocery shopping, because I can no longer load the car with groceries and carry everything into the house when I get home. I found that out the hard way. They also do the heavy cleaning jobs.
Naturally, they are very scared for me. I have an aunt who just died within the last year from emphysema, and they know how devastating this disease is, and how it devours a person. They are worried for me and very protective.
Recently, I started smoking again, and they became very vocal when they found out. I know, I know - it should never have happened. Now I am in the process of quitting again. It is a nightmare, the disease and the smoking.
What advice would you give to anyone living with this condition?
I would tell anyone who is living with this disease to make sure they have competent medical care. Make sure to see a pulmonologist and ask questions, ask questions, ask questions. Don’t allow the doctor to just prescribe treatments for you without understanding what it is that has been prescribed. Stay on top of your disease. Do not be a medical couch potato. Be proactive and learn as much as you can on your own about emphysema so that you can monitor your disease in a more informed and educated way. Even in medicine, we are still consumers and need to be up on what we are purchasing in terms of good medical care.