With so much information available online these days, it’s hard to know which sources to trust. Now that you’ve read the FAQs about PF and seen the answers from our community, you’re ready to learn the truth about the most common myths.
Myth #1: “You only have 3 to 5 years to live.”
The truth: This is an outdated statistic. Nowadays, with new medications and improved management, people live for much longer. The truth is that no one really knows how long you will live. There are many real people with PF who have lived for 8, 10, 15, or more years! That being said, there are others who may get sick sooner or experience worsening symptoms. Click here to learn about the progression of PF, and here to learn about acute exacerbation of PF.
Myth #2: “In order to diagnose IPF, a lung biopsy is required.”
The truth: Each patient’s case is unique. There are circumstances or situations where a biopsy would either be too risky or simply unnecessary. For instance, biopsies are not required if a high resolution CAT scan can confirm the diagnosis. Also, a biopsy may not be necessary if the cause – such as radiation or medication – has already been definitely established. With certain causes – like occupational exposure, autoimmune or connective tissue disease, and mold or bird exposure – a biopsy may be required. When a biopsy is performed, the patterns of scarring and inflammation seen under the microscope can sometimes give clues about the cause of the fibrosis and can help decide on treatments. Sometimes (in approximately 10-15% of cases) a biopsy may be inconclusive.
Myth #3: “There is no treatment for IPF.”
The truth: There are many things you can do to help treat PF. To start, there are specific ways to slow down the progression of PF, including FDA-approved medications and lifestyle changes such as quitting smoking if applicable. There are even more ways to improve body function: maintaining a healthy diet, using supplemental oxygen, doing breathing exercises, attending pulmonary rehabilitation, etc. To feel better and improve your quality of life, you can attend support groups, try mindfulness or meditation exercises, and talk to your doctor about dietary supplements such as systemic enzymes. From getting vaccinated to washing your hands, there are also many things you can do to stay healthy. To learn more, visit our article on effective treatments for PF.
Myth #4: “Stem cells can cure PF.”
The truth: Stem cells – sometimes referred to as the body’s “master cells” – are cells generally found in the umbilical cord, blood, and bone marrow. They mature into blood cells, brain, bones and all other organs in our bodies. Stem cells can potentially repair, restore, replace and regenerate cells. Because of this, stem cell transplants have been successfully used to treat serious medical conditions, including but not limited to certain cancers, immune deficiency diseases, scleroderma, and other skin conditions. That being said, stem cells do not necessarily provide a cure for these conditions. The idea is to allow the body to heal itself well enough to help with the symptoms of the conditions for long periods of time. This allows for a great increase in quality of life for patients.
Research studies of stem cell treatments for PF are encouraging. If you are considering stem cell treatment, in order to be safe, you must choose a treatment that is either:
- FDA approved, or
- Being studied in a clinical trial for which an Investigational New Drug (IND) application has been approved by the FDA. This means that the FDA has reviewed the clinical study plan and has given approval to conduct the research study.
Please note that unapproved stem cell therapies may be illegal and can be harmful. Some stem cell clinics make false claims and prey on vulnerable people seeking cures for their disease.
Myth #5: “Supplemental oxygen is addictive.”
The truth: In any interstitial lung disease (ILD), it is hard for the oxygen to get into the bloodstream. Low levels of oxygen cause your lungs to work harder and also puts a strain on your heart. When you use supplemental oxygen, your lungs and heart do not have to work as hard. So, once you take off the supplemental oxygen, your oxygen levels will drop – but not because you are ‘addicted’ to it. Rather, it’s because your lungs do not have to work as hard as they had been. This is a good thing! Once you start using supplemental oxygen, you do need to keep using it… but only because your body needs it. Even so, there are several tips for reducing supplemental oxygen available here.
Myth #6: “If you are over 65 years, you do not qualify for a lung transplant.”
The truth: There are many factors that go into qualifying for a lung transplant, and age is only one component that is considered. In fact, even people above the age of 70 have qualified for and successfully received transplants. A lung transplant specialist does a complete evaluation to determine whether you’ll be eligible for the procedure. All centers have different criteria, so do not take one center’s word for it. We recommend contacting multiple centers to see if you qualify (such as Duke, Stanford, Cleveland, Cedars Sinai, and NY Presbytarian). Keep in mind that often pulmonologists are not up to date on qualifications for a transplant. People with PF have been refused by one program but have found up to 5 other options that would accept and evaluate them. It is important to learn all you can and check and recheck your options because criteria do change from time to time.
Myth #7: “Getting a lung transplant will give you an extra 5 years.”
The truth: On average, people who get a lung transplant for PF can live 5 years longer. This basically means that half of people do better than average (and the others do worse). In rare cases (about 8-10%), people do not survive their first year with the transplant. Of those who do survive that first year, half of them live longer than 10 years. In fact, some transplant survivors have been known to live longer than 20 years. That being said, not every PF patient will qualify for a lung transplant. A lung transplant specialist does the evaluation to determine whether you’ll be eligible for the procedure.
Myth #8: “People with PF cannot exercise.”
The truth: According to the National Institute of Health, adults 65 and over who do any amount of physical activity gain health benefits. This includes walking, which provides health benefits and has a low risk of injury. If you cannot walk, other exercises that you can do while seated are also beneficial. For physical activity tailored to your specific needs, try pulmonary rehabilitation. It is a structured exercise program that is prescribed by your physician and personalized for your goals. It not only helps strengthen your muscles involved in breathing but improves your overall conditioning so you can be more physically active with less effort. Breathing exercises are very useful to strengthen muscles involved in breathing. Specific exercises also help in regulating your breathing when you are feeling out of breath, stressed, or anxious.
Myth #9: “Palliative care is for patients who are dying.”
The truth: People often confuse palliative care with hospice care. With hospice care, the patient no longer has treatment options or has decided not to pursue treatment. However, with palliative care, patients may be in any stage of disease and may be actively pursuing and receiving treatment. In both cases, the goal is to provide comfort and to relieve pain and symptoms. Another way to think of palliative care is to consider it supportive care. The support can include supplemental oxygen, treatment of symptoms (such as coughing), and professional assistance with pain, depression, or anxiety through mindfulness or meditation.
To learn more or connect with people who understand the realities of living with PF, sign up for our virtual support group here and join our online community forum.
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