Dear COPD Coach,
Hi, my name is Taylor and I am 17 years old. Just about a month ago my mom told me she has COPD. Stage 3 I believe. She has been diagnosed for years, but hadn’t told me and I became curious like any teenager would. Now that she has told me, she won’t give me any information. I tried looking for it myself on the COPD website, and through Google and stuff, but I don’t know what is giving me accurate information and I don’t speak doctor so most of the time I can’t understand what they’re saying. Not knowing is making things harder for me because I don’t know what to think, so I suppose I assume the worst. I’ve noticed a lot of changes in my mom over the past few months and it would be great if you could tell me what I should expect in the future and where she would be at now being in Stage 3. Also, I would like to know how I can support her. I just moved 10 hours away from home to go to university, so I feel pretty useless. She is a single mom and only has my 13 year old sister now that I’ve left. Can I do anything from here?
I realize that being kept uninformed can be kind of frustrating for about anyone, and I applaud your efforts to find out more about your mother’s COPD, for a couple reasons. First, by learning more about it, you can recognize when your mother’s condition is getting more serious and then can encourage her to take necessary steps to alleviate the problems. Second, we believe that most COPD is probably genetic, which can thus become a precautionary life lesson for you and your sister.
Let’s start with a little COPD 101. COPD is an umbrella term most commonly covering emphysema, chronic bronchitis, and some forms of asthma. There is one genetic form of COPD that we know of called Alpha-1 which is inherited from both parents. If you have a history of COPD in your family, it could be Alpha-1. If your mother has not already had this test, I would encourage her to get it. You might also consider getting tested yourself, because you may be carrying the gene. For information on getting a free Alpha-1 test kit, call our C.O.P.D Information Line at 866-316-2673.
There are four stages of COPD. The most recent model labels them A, B, C, and D, but in your mother’s case, her doctor is using the 1,2,3, and 4 system. This system is based on one number on her lung function test, the FEV1, a major indicator of the level of COPD. Stage one is rarely noticed because there is not significant lung damage. The second stage (moderate) is when the individual has 50 – 80% lung function. At this stage a person starts to get out of breath walking up stairs or inclines, and they begin to notice that their daily activities are often affected. The third stage (severe) is when the individual has 30- 50% lung function. At this stage daily activities are definitely affected, and the individual gets short of breath with most physical activity. The fourth stage is when the individual has less than 30% lung function. Although it is important in all stages of COPD, it is especially in Stage 3 and 4, that the individual take extraordinary good care of their health by eating properly, exercising regularly , taking medications as prescribed, getting appropriate immunizations for cold and pneumonia, avoiding sick people, and avoiding first- and second- hand smoke as well as chemicals and pollution. Often a person in stage 3 or 4 becomes hyper-sensitive to things like perfume and cleaning chemicals.
As far as supporting your mother from ten hours away, do your best to encourage her to connect with a doctor who specializes in lung disease; this will help assure that you mom is getting up-to-date care. Urge her to ask her doctor to refer her to pulmonary rehabilitation. This is an exercise and education program that will teach her how to manage her COPD and get through each day with less shortness of breath. Guided by health care professionals who specialize in exercise for people even with very severe COPD, she will improve her physical conditioning to stay as active and strong as possible. She will also get to know others in the class who have COPD – a great peer support system she needs. It will be challenging for you to be so far from home, but even from a distance you can offer encouragement, support, and hope. I assume your mother is not sharing any information with you because she is trying to keep you from worrying as you prepare your way into the world. By providing encouragement and support, you will show her that there is room in your life for college as well as love and concern for her.
A great source of information on COPD is the Big Fat Reference Guide which can be viewed for free at www.copdbfrg.org. If you call the C.O.P.D Information Line, ask for a free subscription to the COPD Digest for both yourself and your mother. It has a lot of great information that can really help! Our Infoline staff is made up of individuals who have COPD, as well as caregivers. Call the Infoline and ask to speak with a caregiver if you have a question or need a listening ear.
It’s important to realize that there is no time limit for how long your mom will be in this stage. If she does not smoke cigarettes and is able to avoid acute exacerbations (times when her COPD flares up and she becomes ill) she can actually slow the progression of the disease. By recognizing the signs of an impending exacerbation, she can avoid some additional lung damage. Lastly, I recommend you talk with your mother about telling your sister and another close relative that she has COPD, so they can be your “eyes” while you are away. Most of all, talk to your mother regularly and let her know you love her because that in itself is powerful medicine!
I hope this answers some of your questions, or at the very least gives you a source to learn more. Thanks for taking the time to write. If there is any other way we can help, please let us know. Our very best wishes to you for success in college!
- The COPD Coach
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