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Maintaining Your Health

While your doctors, nurses, and other care providers will help you to manage your disease, you are your most important advocate. 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. Here are a few steps you can take to make sure you maximize your care:

  • Speak up for yourself. 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.
  • Be prepared for your visits. Bring a list of your questions or concerns to each visit. 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.
  • Take notes during your visits. 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.
  • 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.
  • Contact advocacy and support groups. Reach out to community or national groups that assist people with pulmonary fibrosis. 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. You can then pass your tips on to others to help support the community.
  • Stay informed. Continue to learn about PF. 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.

YOUR CARE TEAM



monitoring

Continued monitoring of your pulmonary fibrosis is a central part of maintaining your health. Through monitoring, you and your care providers can determine whether your disease is stable, how well you are responding to your treatment, and what steps should be taken next. Regular interactions with your care providers will also help ensure that you receive the most current and best possible care.

Regardless of the underlying cause of your PF, continued monitoring is a vital component in your treatment. Talk with your provider about how frequently you should see them and what steps need to be taken to ensure that your disease is properly managed.

lifestyle

There are a variety of things that you can do to maintain or improve your quality of life while living with pulmonary fibrosis. The National Institutes of Health and the Mayo Clinic offer a variety of recommendations for patients, several of which are referenced in this section.

  • Stay in Shape. One of the most damaging consequence of lung disease and its sensation of breathlessness is the development of an inactive lifestyle. For many with PF, activities of daily living, like bathing and dressing, can create overwhelming fatigue.  "Air hunger" can create panic attacks, and produce negative psychological effects.  People with PF sometimes limit their physical activities in a n attempt to avoid breathlessness. The lack of exercise works against you; inactivity weakens your muscles making even the simplest daily activities even more difficult. Regular exercise can strengthen your muscles and makes them more resistant to fatigue. With practice and training you can learn to perform task in a more efficient manner. By being more efficient you need less oxygen for the same amount of work. The result is that you may find that you have more energy to accomplish daily tasks and that you are less short of breath. A formal rehabilitation program (pulmonary rehabilitation) is preferred because it allows for observation during exercise and it can be tailored to your specific needs. 
  • Eat Well.  A healthy diet includes a variety of fruits, vegetables, and whole grains. It also includes lean meats, poultry, fish , beans, and fat-free or low-fat dairy products. A healthy diet is low in saturated fat, trans fat, cholesterol, sodium (salt), an added sugar. Eating smaller, more frequent meals may prevent stomach fullness that make it harder to breathe. If you need help with your diet, ask your doctor to arrange for a dietician to work with you. A nutritionally rich diet that contains adequate calories is essential. A dietician can give you further guidelines for healthy eating.
  • Get Plenty of Rest. Getting at least eight hours of sleep every night can boost your immune system and sense of well-being.
  • Stop Tobacco Use. If you are still smoking, the most important thing you can do is to STOP SMOKING. Due to the addictive nature of tobacco, this can be difficult. Seek the help of your physician to find a smoking cessation class or other beneficial methods to help you stop smoking. Second-hand smoke can be as harmful to you as if you were smoking yourself. Ask your family and friends to refrain from smoking around you.
  • Learn and Practice Relaxation Techniques. Learning relaxation techniques can help you manage the anxiety that often accompanies breathlessness. Joining a support ground and/or seeing a counselor can help you cope with your feelings and the anxiety and depression that are common in people with PF. The restriction on activity due to shortness of breath may lead to isolating oneself from family and friends, adding to the depression.
  • Join a Support Group. Just knowing that there is someone out there that knows how you feel is comforting. Share ideas, share fears, and share joys.  
  • Participate in Your Health Care. Remember you are a part of a health care team that includes your doctors and nurses. They 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. Be a participant. Bring someone with you to each appointment and prepare a list of questions to be answered by your physician during your visit.
  • Help Others with PF. Consider participating in the Pulmonary Fibrosis Foundation's advocacy program. You may gain strength in knowing that you are helping future patients and researchers by advocating for the pulmonary fibrosis community.
  • Keep a Positive Attitude. 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.


questions for health care providers

Your health care providers are partners in the treatment of PF. It is important that you have a firm understanding of your disease and how you should care for it. Ask your providers about anything relating to your treatment that you do not fully understand. Here are a few questions that may help you manage your care: 

  • How will PF impact what I can and cannot do? You are probably already aware of the limits of what you can and cannot do in your everyday routine. There may be activities that you do not regularly engage in which may be impacted by your pulmonary fibrosis. This can include traveling by air or visiting high-altitude places. Your care providers can help you identify what activities may present some challenges. 
  • What should I do and whom should I contact if I have any problems with my PF? Having an action plan in place in case of problems is a must for anyone with a chronic disease. Ask about where you should go, whom you should call, and what you should do during nights and weekends if you have a problem with your pulmonary fibrosis. You should also know whom to contact if you have any questions and concerns about your current care, including your treatment. 
  • When is the right time to start or switch treatment? The decision to start therapy depends on your health and desires. It should be made in conjunction with your health care providers and those who will help support you, such as family and friends. Once you have started therapy, you may need to change it as your disease and needs evolve. When your treatment is no longer working well, it is time to discuss other treatment options. However, even when treatment is working there may be better options for your needs. Asking about what options are available is a good way to find out what changes are happening in the treatment of PF and ensures that you get the best treatment for both your disease and lifestyle. 
  • Will my treatment interfere with other medications I am taking? It is very important that your care providers know all of the medications that you take regularly — both prescribed and over-the-counter — as well as any vitamins or other nutritional supplements. Asking your providers about drug interactions helps ensure that all of your medications are reviewed for potentially dangerous interactions.
  • Are there resources that can help me lead a healthier lifestyle? Improving your lifestyle is a critical component of improving quality of life. However, changing things like how much you exercise, your diet, and smoking habits can be very difficult. Care providers may be able to direct you toward resources that can help you modify your lifestyle and adopt healthier behaviors. These can include support groups, dieticians, and personal trainers. Showing an interest in adopting healthier behaviors is the first step in accomplishing these changes. 
  • Is a clinical trial right for me?  Clinical trials are a potential resource for patients who may not have many good treatment options. Whether you should enroll in a clinical trial depends on many factors, including what trials are available in your area, whether you are motivated to participate, and your current condition. If you are interested in participating in a clinical trial, talk with your care providers about options; they will help you determine if a clinical trial is right for you.

palliative and end of life care

The purpose of both palliative and hospice care is maintaining a patient’s comfort and quality of life. While this care does not specifically treat pulmonary fibrosis, it is designed to improve the quality of life for anyone dealing with a chronic illness. 

PALLIATIVE CARE

Using a multidisciplinary approach, palliative care can involve physical, psychosocial, and spiritual factors in the treatment approach. Teams may include physicians, pharmacists, nurses, religious leaders, social workers, psychologists, and other health care professionals. These teams focus on concrete goals including relief from breathlessness and other distressing symptoms, spiritual care, development of support systems, and encouraging an active lifestyle.

HOSPICE CARE

Hospice care is a type of end-of-life care, intended to help people who are dying find peace, comfort, and dignity. It is generally reserved for those who have less than six months to live and often includes treatments to control breathlessness and other symptoms to maintain comfort. Hospice care also provides support to families. Care can be provided at a hospice center but can also be done in nursing facilities, hospitals, or at home.

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