Doctors, nurses and respiratory therapists agree that when it comes to being a good patient, individuals who have cystic fibrosis tend to lead the pack. Although they develop some of their “patient personality” largely out of necessity, there’s no question about their ability to face the challenge of CF with every ounce of dedication and diligence they have to give.
Good patients typically embody the following qualities:
Willingness to learn
Being actively involved in your own health care is just one of many ways to take back some control in what is largely uncontrollable. You may not be able to avoid catching a bacteria or virus from the world at large, but you can be proactive in remedying it. A patient who is actively involved in their care understands the importance of making appointments in advance even when they don’t feel particularly sick. They know that managing CF requires ongoing monitoring of their status, particularly when it comes to charting the results of pulmonary function tests (PFTs) and sputum cultures. An actively involved patient understands the value of “an ounce of prevention.”
Good patients who are actively involved in what their doctors are doing, often bring along a supportive friend or family member to their clinic appointments. A second set of ears to hear what the doctors have to say is a good way to make sure you don’t miss anything important or new. Active involvement may also involve bringing a notebook to each appointment to record the doctor’s instructions and recommendations. Making lists of questions for the doctor ahead of time, as well as a list of any medications that need refills are things that good patients do to stay on top of things. -Self-Awareness-
Similar to being actively involved in your health care program, you must be self-aware. By learning what constitutes your particular “base line” or “status quo” you will be more adept at recognizing when things are starting to decline. For example, if your cough is usually dry and tight but starts to become wetter and more productive, you get on the phone to schedule an appointment at the CF Clinic.
Another aspect of self-awareness is that you have a healthy attitude about your limitations because of CF. You are able to live life to the fullest, but do so without exhausting yourself or putting yourself in harm’s way. A good patient who is self-aware knows how to set appropriate boundaries to keep friends and even family from pressuring you into giving too much of yourself.
Patients who are self-aware are honest with their doctors about the non-physical aspects of life with CF. They understand that the emotional burden that comes with having a chronic condition like CF is sometimes too much for one person to bear. A good patient asks for help when they feel overwhelmed.
Good patients ask questions and expect answers. They ask medical professionals about any new treatments or medications they’ve heard about or read about online. An inquisitive nature not only helps a CF patient understand his or her own body, but enables them to gain clearer understanding of what the doctors are doing and why.
An inquisitive patient does not assume that s/he has all the answers. Patients who are inquisitive don’t assume that everything they read on the Internet about CF is true or applicable to their individual situations. They bring their questions to the professionals and ask for clarification. They respect the doctor’s expertise and training, and ask questions about things they don’t understand. A good patient is not afraid to ask a doctor to explain things more than once. After all, cystic fibrosis has so many facets, it’s unreasonable to expect to learn it all in a short clinic appointment.
-Willingness to Learn-
When a doctor recommends a new course of treatment or a new therapy, a good patient is willing to learn to adapt. Instead of refusing to try something unfamiliar, they give it a fair chance before making a final decision. For example, if your doctor recommends that it’s time to get a port-a-cath instead of a PICC line, a good patient will be willing to learn why this is so. Similarly, if a patient is diagnosed with cystic fibrosis related diabetes (CFRD), the willingness to learn how to manage the new condition should override any desire to complain or become depressed at the news.
Although there is certainly a time and a place for complaining and “venting” about the struggle of life with CF, a patient with a healthy outlook and willingness to learn will be able to successfully balance it all with a bit of help. Patients who are willing to learn are not afraid to step outside their comfort zones and learn how to let other people help them with things.
Rarely are cystic fibrosis patients 100% compliant with all their treatments and medications, though there are some who set the bar quite high! Compliant patients stand a much greater chance of finding a sense of peace and acceptance of their disease. Patients who are compliant can rest assured to know that they are doing everything within their power to make their lives as full and beautiful as possible, even with CF.
Doctors appreciate their patients who are compliant, because it makes their jobs a bit easier. For example, if a patient is compliant to take their enzymes as directed suddenly begins to have a change in their bowel movements, the doctor will know that either the diet has changed or the enzymes are no longer effective at that particular strength. Less time is wasted in trying to find an appropriate solution.
Compliant patients keep their appointments. They understand the need for preventive care in treating cystic fibrosis, and they take every opportunity to monitor their health.
Managing life with cystic fibrosis can be tough, but it doesn’t need to be overwhelming and depressing. If you work on being a good patient, chances are you’ll cope with the disease much better.