The Weight of COPD: A Personal Account

Transcription

1 The Weight of COPD: A Personal Account Despite the fact that millions of Americans suffer from COPD, family, friends, and healthcare providers often fail to realize the full impact that COPD has on people s lives and emotions. The story below describes the experiences of one patient with COPD and her struggle to manage her condition. The account is based on an interview conducted by PRIME Education, Inc. (PRIME ) with a COPD patient, but reflects the voices of many. The Diagnosis PRIME: People often suffer from COPD symptoms for several months (or even years) before they are diagnosed. Can you describe your experience of being diagnosed with COPD? Carrie: I will never forget the day I was diagnosed with COPD it came as such a shock. I did not feel well in the morning. I was struggling to get dressed for work and eventually called in sick. As the day went on, I felt even worse. I began to get really scared and called my daughter. She took me to the emergency room. By the time we arrived, I could barely breathe. I thought I was going to suffocate They admitted me to the hospital and put a tube down my throat. I was terrified nurses were coming and going, and I did not know what was going on. I heard someone say emphysema. I thought, Emphysema I m only 42 Before being released from the hospital, a pulmonologist told me that I had COPD caused by years of smoking. He was unemotional and seemed in a hurry so I did not ask questions. He gave me a prescription for an inhaler and told me that I should follow up with my primary care doctor. PRIME: Has your doctor explained your stage of COPD? Carrie: No, I did not realize there were stages. No one has ever explained the different stages to me. I have difficulty breathing when I m walking up stairs and when I m doing a lot of talking. COPD has impacted my quality of life and limited what I can do, so I guess I m stage 3 wow 2014 PRIME Education, Inc Page 1 of 5

2 COPD is a progressive lung disease characterized by increasing breathlessness. Although there is no cure for COPD, treatments can slow disease progression and improve symptoms. It is important that you talk with your healthcare provider(s) to help you understand the stages of COPD and available treatment options. THE 4 STAGES OF COPD Stage 1: Mild Stage 2: Moderate Stage 3: Severe Stage 4: Very Severe Mild airflow limitation May have a chronic cough or mucus production Airflow limitations start to get worse May experience shortness of breath when active Breathing becomes more limited during the day and night Greater shortness of breath and increased mucus while coughing May have a hard time recovering from lung infections or colds May need oxygen therapy Quality of life may be impacted Very severe airflow limitations All of the previously mentioned symptoms Flare-ups are life threatening PRIME: Did your doctor provide you with assistance to quit smoking? Carrie: No, I did not need any help quitting. Not being able to breathe and being told I had emphysema when I was hospitalized was so utterly frightening that I have not smoked a cigarette since. Stopping smoking is the most important way to slow the progression of COPD. Most people who smoke find it easier to stop if they receive professional help or advice. Living with COPD PRIME: Tell us about what it s been like for you since your diagnosis. Carrie: I never fully recovered from that first flare-up. I went to my primary care provider, who is a physician assistant. I like her because she takes the time to listen to me. She told me that exercising would help and to take my inhaler if my breathing got worse again. I followed her advice and lost 10 pounds. That made me feel a lot better That was 8 years ago. Since then, my breathing has gotten worse. The pulmonologist gave me a new inhaler and told me to take it twice a day. I tried for awhile, but it makes my heart race so fast that I cannot bear it. Instead I just take my rescue inhaler when I have trouble breathing. I would like to exercise too, but I just cannot anymore. Together with physical exercise, medications prescribed by your doctor are important in keeping your COPD from getting worse. Be sure to talk with your healthcare provider about any problems you are having with your COPD medications, including side effects PRIME Education, Inc Page 2 of 5

3 PRIME: Did your doctor discuss with you other medications you might want to try? Carrie: Not really. I think the other medications were too expensive and my insurance would not cover them.. There are several treatment options available for people with COPD. Talk with your doctor about finding the treatment that works best for you and ways to help you afford your medications. PRIME: What symptoms of your COPD bother you the most? Carrie: Feeling short of breath when I m active and not having enough energy to do the things I want. My COPD is a major source of stress for me I feel as if my life revolves around my disease. PRIME: Besides being stressful, how has living with COPD made you feel? Carrie: Angry I feel angry at myself for having smoked and not fully appreciating what the consequences would be. I also feel panicked and scared sometimes. Having a life-threatening disease is very frightening. I want my doctors to be honest with me about my condition and what it will be like as my disease progresses. Now that I know about the different stages, I would like more information about my disease. Healthcare providers need to know how you are feeling in order to provide you with the best possible care. Be sure to share your symptoms and how COPD is affecting your life and activities. Share feelings of depression, anxiety, or loneliness, and ask about ways to help you cope with these feelings. PRIME: What are your main challenges and frustrations in living with COPD? Carrie: Not being able to work full time. I was an office manager at a clinic for 16 years, but now I can only work a little from home due to my symptoms. It s also hard to make plans because I often have to cancel them depending on how I feel. COPD Healthcare Experiences PRIME: Who is helping you treat and manage your COPD? Carrie: I mainly go to a clinic to see my primary care provider [physician assistant]. I like her she understands what I am dealing with. But I m not a very good patient I only go to the doctor to get breathing treatments when my symptoms get bad. Recently, I had been feeling sick for 2 or 3 months. When I finally went into the clinic, my doctor was very upset with me for not coming in earlier. I ended up having to go into the hospital again, and I have not been breathing right since. Regular follow-up visits are important for monitoring your COPD, adjusting your treatment plan, and preventing flare-ups. Ask your doctor when you should schedule your next appointment.

4 PRIME: Besides your primary care, who else is helping to treat or manage your COPD? Carrie: I also see a pulmonologist, but it s difficult to get appointments with him. When I do get an appointment, it s only for 15 minutes. I know he is very busy and probably does not have as much time as he would like to spend with me. Consequently, I do not think he truly understands how I am feeling. I also see a pain management doctor that I really like. He always asks me about my breathing and is careful to make sure that my pain medications do not interfere with my COPD. Your primary care doctor, pulmonologist, and other healthcare providers you see play important roles in helping you manage your condition. To help you make the most of your time, be prepared for your appointments: Assess your condition are your symptoms getting better or worse? Bring a list of your questions and concerns to help you talk with your doctor Bring or list all the medications you are taking, including over-the-counter drugs and supplements Use PRIME s COPD Care Checklist and COPD Self-Assessment Questionnaire on to help you communicate with your healthcare providers PRIME: Have you discussed your treatment goals with any of the doctors who are helping to treat your COPD? Carrie: No, I suppose I should though. I would like to manage my symptoms and be able to do my normal activities. It would be wonderful to be able to work full time again. Setting treatment goals and discussing them with your COPD healthcare team is an important part of your treatment plan. PRIME: Have any of your COPD doctors discussed or recommended pulmonary rehabilitation or taught you breathing exercises? Carrie: No, they have not. I know exercise is important, but right now my breathing makes it impossible. Pulmonary rehabilitation is a program that includes exercise, education about COPD, and support to help you manage your COPD. Many people report benefits from pulmonary rehabilitation including reduced symptoms and improved mood.

5 PRIME: Have you had the flu or pneumonia shot this year? Carrie: No, my doctor offered it to me once, but I told her that I do not believe in vaccinations. Chest infections are a primary cause of COPD flare-ups. Vaccinations for flu and pneumonia are safe and effective, and are important for preventing COPD flare-ups. People with COPD should receive the flu each year and be vaccinated for pneumonia. PRIME: Do you feel comfortable asking questions or raising your concerns with your healthcare providers? Carrie: Yes, I feel comfortable talking with my primary care doctor and my pain management doctor. I do not feel as comfortable with my pulmonologist, probably because I do not see him as often and my appointments with him are shorter It is important to find a healthcare provider who you feel comfortable discussing your condition and treatments with. Remember to share all your symptoms and medications. Tell your healthcare provider about other conditions that you may have, and about other physicians that you are seeing. Your healthcare providers are your best resource come prepared with questions and concerns. Conclusion Carrie s story illustrates the emotional and physical burden of COPD. The toll that a COPD flare-up can take on a person s body has been compared to a heart attack. Even after the flare-up has resolved, the physical and emotional impact lasts for a long time. People with COPD are often unaware of the progressive stages of COPD, and the unpredictable trajectory of the disease can make it difficult for healthcare providers to talk with COPD patients about what to expect down the line. It s important for patients and healthcare providers to maintain an open and honest line of communication about their disease. Patients should feel comfortable asking questions and raising concerns about COPD and its treatment. There are several options for treating COPD, both with medications and through other avenues such as pulmonary rehabilitation. Patients and healthcare providers should discuss what options are best for them and that can help reach their goals. *Names were changed to protect the patient s privacy.