Maintain Your Health
Maintaining Your Health
While your doctors, nurses, and other care providers will help you to manage your disease, you are your most important advocate since you are the center of your treatment. People who take an active role in their own care frequently have better results in the long run.
There are a variety of things that you can do to maintain or improve your quality of life while living with pulmonary fibrosis. Below are steps you can take to maximize your care and maintain your health.
Speak up for Yourself
Remember you are a part of a healthcare team that includes your doctors and nurses. If you have any concerns with your treatment or do not understand something about your disease, it is essential that you talk to your care providers. They want to make sure that you are able to maintain your health and will assist you with these issues. You are your own best advocate.
Be Prepared for Your Visits
Being prepared goes a long way in communicating with your providers – you cannot assist in the decision making process if you do not understand the factors involved.
Your healthcare team will be asking you a lot of questions. As a member of that team, you have a responsibility to do your part. Be prepared to ask your own questions and participate. Prepare a list of your questions or concerns for your physician and bring it to your visit. Here is a list of questions for your doctor.
You will likely receive a significant amount of information during your health care visits and this can be overwhelming. Do not be afraid to take notes to help you remember important treatment issues later on. It may be helpful to bring someone with you to each appointment to help you take notes. The PFF Physician Notepad is a helpful tool to take notes during appointments and facilitate a conversation between you and your doctor.
Let Your Family and Friends Help
Emotional support is very important to maintaining your health. This is especially true if you are trying to modify your lifestyle. Quitting smoking, exercising more, or changing your diet is difficult; let those who care about you help you accomplish your goals. Do not be afraid to bring people who support you to your health appointments.
Join a Support Group and Help Others With PF
Reach out to community or national groups that assist people with pulmonary fibrosis. Just knowing that there is someone out there that knows how you feel is comforting. Share ideas, share fears, and share joys. It can be very useful to find out how other people manage their disease. They may give you invaluable tips or tools that make it easier to manage your health, and you can then pass your tips on to others to help support the community. You can search for PFF support groups here.
Continue to learn about pulmonary fibrosis. The more you know, the better you will be able to manage your disease and recognize when you need to access health services. Be advised that there is misinformation on the internet; to ensure your safety, make sure you access reliable sources of information, such as advocacy groups and respected scientific and medical sources. You can access a full list of the PFF’s educational resources here.
Eat Well and Get Plenty of Rest
Stop Tobacco Use
Take Steps to Prevent Respiratory Infections
- Get a flu vaccine every year. Everyone older than six months of age in the home needs to be vaccinated against influenza every year.
- Make sure you have received a pneumonia vaccine if you are over age 65. Younger adults with certain health conditions may also need to be vaccinated against pneumonia.
- Get vaccinated for COVID-19..
- Wash your hands or use hand sanitizer frequently, especially after returning home.
- Notify your primary care provider immediately at the onset of a cold, cough, or flu.
- Avoid large crowds.
- Know when to say NO to visits from family or friends; to sitting in a hospital emergency waiting room with sick people; or anything else you feel is unsafe. You are the best judge of what is okay or not.
Practice Relaxation Techniques and Keep a Positive Attitude
Learning relaxation techniques can help you manage the anxiety that often accompanies breathlessness. Joining a support group and/or seeing a counselor can help you cope with your feelings and the anxiety and depression that are common in people with pulmonary fibrosis. The restriction on activity due to shortness of breath may lead to isolating oneself from family and friends, adding to the depression.
Actively participating in the management of your disease is greatly enhanced by a positive attitude. A positive attitude can help you and your loved ones cope with the disease.
Prepare for the Future
Learn about Quality of Life Care
Find reliable information and trusted resources that can help you learn about pulmonary fibrosis and live better with PF.
Pulmonary Fibrosis Quick FactsThis one-page document provides quick facts about pulmonary fibrosis, including symptoms, causes, treatment options, and more.
Pulmonary Fibrosis Information GuideOur comprehensive guide provides reliable information about pulmonary fibrosis, the diagnostic process, treatment options, and more.