Quality of Life
What Patients Can Do to Help Their Quality of Life
What can patients do to stay healthy? There are a variety of things that patients can do to maintain or improve their quality of life while living with idiopathic pulmonary fibrosis (IPF). The National Institutes of Health (www.nih.gov) and the Mayo clinic (www.mayoclinic.org) offer a variety of recommendations for patients, some of which we have referenced in this section.
Stay in shape! - The most damaging consequence of lung disease and its sensation of “breathlessness” is the development of an inactive life style. For many patients, 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 chronic respiratory problems sometimes limit their physical activities in an attempt to avoid shortness of breath. The lack of exercise works against you! Inactivity weakens your muscles and they become less efficient. Deconditioning can make even the simplest daily activities more difficult. Through regular exercise muscles become stronger and more resistant to fatigue. With practice and training you can learn to perform tasks 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 milk or milk products. A healthy diet is low in saturated fat, trans fat, cholesterol, sodium (salt), and added sugar. Eating smaller, more frequent meals may relieve stomach fullness, which can make it hard to breathe. If you need help with your diet, ask your doctor to arrange for a dietitian to work with you. A nutritionally rich diet that contains adequate calories is essential. A dietitian can give you further guidelines for healthy eating.
Manage your coughing symptoms - A nagging, dry cough is one of the most common complaints of patients with IPF. Although cough is often caused by IPF, there are other conditions that can make it worse. These may include postnasal drip, GERD, allergies, smoking. Nasal sprays, cough medicines, and cold remedies may help control cough. Consult your physician for specific remedies that may help your symptoms.(14)
Get plenty of rest - Getting at least eight hours of good-quality rest every night can boost your immune system and sense of well-being.
Stop using tobacco- Avoiding environmental irritants, like cigarette smoke, is a good way to prevent further damage to your lungs. If you are still smoking, the most important thing you can do is to stop. Due to the addictive nature of tobacco, this is can be difficult. Seek the help of your physician to find a smoking cessation class or other beneficial methods to help you. Second hand smoke can be as harmful as if you were smoking yourself. Ask your family and friends to refrain from smoking around you as well.
Learn and practice relaxation techniques: When you are physically and emotionally relaxed, you avoid excessive oxygen consumption caused by tension of overworked muscles. Learning relaxation techniques can help to manage the panic that often accompanies shortness of breath. Joining a support group and/or seeing a counselor can help you cope with your feelings. Anxiety and depression are common in people with chronic breathing disorders. These feelings may aggravate the underlining disease. Many fear losing the ability to function and becoming dependent on others. The restriction on activity due to shortness of breath may lead to isolating oneself from family and friends, adding to the depression.
Sexual health - Sexuality is an important part of everyone’s overall heath, and you should discuss your concerns as openly as possible with your doctor. Because sexual intercourse requires more energy, patients with IPF may have problems with shortness of breath during sex. The American College of Chest Physicians (ACCP) suggests that patients consider a few helpful tips: Consider choosing a time for intercourse when you are relaxed and rested; try positions that place less stress on the heart and lungs, such as side by side or on your back; avoid sexual intercourse after a heavy meal; and, use oxygen if it has been prescribed for you. (14)
Join a support group - Just knowing that there is someone “out there” who knows just how you feel is comforting. Share ideas, share fears and share joys.
Participate in your health care - Remember you are part of a health care team that includes 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 you have, and prepare a list of questions to be answered by your physician during your visit.
Help others with IPF - Consider participating in the Pulmonary Fibrosis Foundation’s advocacy program in Washington DC. You may gain strength in knowing that you are helping future patients and researchers by lobbying your Member of Congress to do more to help the IPF community.
Keep a positive attitude! - Actively participating in all parts of the management of your disease is greatly enhanced by a positive attitude. You may not be able to control the course of your illness, but you can control your attitude and spirit every single day. Do you want to be sad, glad or mad? Pick one. Do you want to be positive or negative? Choose one. A positive attitude may not solve all your problems, but it will certainly make a difference in how you cope with having PF.
"A strong positive mental attitude will create more miracles than any wonder drug." Patricia Neal
