Being diagnosed with a serious disease like idiopathic pulmonary fibrosis (IPF) can turn your life upside down and force you to adjust your life goals. It is normal for people with IPF to experience fear, worry, anxiety, and panic as they anticipate the decline in their ability to function and a loss of independence. Many want to stop taking part in social activities and some may experience a strain on their relationships. It’s important for you to recognize that these are all normal feelings and that you must find ways to cope with them. Your healthcare team should be able to get you the support you need.

The following is a list of some practical tips to give some guidance to someone who has just been diagnosed with IPF:

Learn how IPF progresses,
and why slowing this
progression is so important

Learn About IPF Progression

As with other serious medical conditions, you may find being diagnosed with idiopathic pulmonary fibrosis (IPF) to be a confusing and overwhelming experience. Because IPF is such a serious disease, people living with it experience a number of challenges that often come with a range of feelings. These may include:

You may want to work with your doctor and other healthcare professionals to try to find strategies to cope with these feelings.

Meet people living with IPF, and find support for both patients and caregivers at a live event.

Find events near you

Experts recommend that healthcare teams carefully evaluate their IPF patients’ support systems and their ability to cope with the challenges of IPF. This assessment can help the team determine what type of support may be required so they can help patients find the resources they need. Psychological and spiritual support should be considered as part of the comprehensive care of IPF patients. This comprehensive approach has been shown to help enhance the daily lives of IPF patients and may help reduce their fears about the progression of IPF.

Read information with advice on how to work with your doctor to help get the best possible care.

Taking Care of Your Mental and Emotional Health

Studies show that depression among people with IPF is very common. If you have any of the symptoms described below, talk to your healthcare team:

Your healthcare team can help get you counseling and even prescribe medicines if they determine that’s what you need.

Other Important Tips to Consider:

Get Support

As with patients who have other serious health conditions, patients with IPF may find it helpful to join a patient support group to reduce their anxiety and find comfort. Experts agree that giving people with IPF access to support groups may contribute to helping them address their unique needs. If you are interested, ask your doctor or check with a local medical center to see if there are IPF support groups in your area. Joining an IPF patient support group may help you adjust to living with IPF and learn more about it. You can meet other people who have the same symptoms and find out what they do to cope with them.

There may not be a local IPF support group in your area, and maybe you can’t or don’t want to travel to the nearest one. Or, perhaps there is a local support group, but you would rather not attend in person. If so, another option to consider is to join an online IPF support group. They can offer many of the same benefits, while the information and support they provide can be accessed from the comfort of your home. (Learn about online support groups)

Some patients with idiopathic pulmonary fibrosis (IPF) may be prescribed oxygen therapy after being assessed by a doctor. For those patients, oxygen therapy may allow them to be more physically active. While medications and alternative therapeutic treatments are available, taking supplemental oxygen can help patients with IPF feel better and get the oxygen they need today to maintain a more active lifestyle. It's important to remember that, for some, oxygen therapy may only be needed during activity, but for others, it may also be needed at rest and—possibly—during sleep.

Ensuring your body has the oxygen it needs plays an important role in IPF management. Because IPF reduces the capacity your lungs have to deliver enough oxygen to your blood, muscles, heart, brain, and vital organs—they can become oxygen deprived, resulting in many side effects, including: added strain on your heart, worsened shortness of breath, and fatigue—keeping you from being active.

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“Getting enough oxygen to all your body’s cells is essential. IPF can result in oxygen imbalances.”

Trina Limberg, Director of Pulmonary Rehabilitation at UC SD Medical Center

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The Myth of Supplemental Oxygen Addiction

Oxygen therapy is a non-addictive treatment that helps deliver oxygen to your body when your blood oxygen levels are low. As scarring in the lung and IPF progresses, the lung is injured in such a way that makes it hard to take a deep breath and get fresh oxygen-enriched air to all areas of the lung. Breathing in higher concentrations (or amounts) of oxygen with supplemental oxygen helps to increase your blood oxygen levels, which benefits vital organ function and helps you to be more active. If you have low blood oxygen levels and do not use supplemental oxygen, you may experience shortness of breath, fatigue, and damage to other areas of the body.

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“Remember, oxygen is not addictive; it is important for life.”

Chris Garvey, FNP, MSN, MPA, MAACVPR University of California San Francisco

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Easy Answers to Big Questions

What Will People Think? One of the biggest challenges patients can face is the stigma that is sometimes associated with IPF. Patients can become self-conscious when carrying around an oxygen tank, or when suffering from uncontrollable symptoms such as shortness of breath and coughing, in public. Taking charge can make a difference. There are many ways patients can learn to handle the stigma often associated with IPF and carrying oxygen in public. Become an Advocate Many patients work to make a difference by using their condition to help others and to help bring awareness to IPF.   Join a Support Group Joining a support group and sharing your experience with other IPF patients can make a real difference in coping with the emotions and challenges patients face when living with IPF. Whatever the challenge, it's always better to brave the public than to stay at home and miss out on living a full life. Fresh air, nature, socializing with other people, and remaining active are key ingredients to maintaining a normal and fulfilling lifestyle.

Is Oxygen a Drug? Supplemental oxygen is a prescription medication. Oxygen therapy is considered a medical treatment, and therefore must be prescribed by a doctor. Some patients may require oxygen therapy at home throughout the day, while others may need it only when exerting themselves and/or during sleep. If you're a candidate for supplemental oxygen therapy, your prescription may include: How much oxygen you need, and when (at rest, during exercise, while sleeping, etc.). How many hours a day you will need supplemental oxygen. What type of oxygen and delivery system is ordered, ideally one that will best suit your lifestyle.

Is Oxygen Addictive? No, however, you may quickly realize that by using oxygen as your doctor prescribes, you feel better and can do more of the activities that are important to you. Once you can see and feel the benefits, you may make the choice to continue using it as prescribed.

What is the Cost of Oxygen Therapy? Can I Afford It? Most insurance plans, including Medicare and Medicaid, will cover most costs related to your supplemental oxygen therapy, as long as your test results show that you need the oxygen. Additional costs can also be covered by your supplemental policies. Insurance coverage varies, so check with your insurance provider about your coverage. Your health care provider can help you choose the right company to meet your needs for supplemental oxygen. Learn more at medicare.gov

Living with Oxygen

Preparing the House

When using supplemental oxygen, it’s important to prepare your house in advance. Avoid using oxygen around open flames, cigarettes, and heaters, and be sure to store oxygen tanks safely.

Traveling with Oxygen

Today, air travel with oxygen is possible when you prepare in advance. Some patients are able to carry a small, travel-size portable oxygen concentrator when they travel to make getting around easier.

Monitoring Oxygen Levels

Monitoring oxygen levels with a finger oximeter can help you to see for yourself how your body functions and how you feel when your oxygen levels are above or below 90 percent. Being short of breath doesn’t always mean your oxygen levels are low—an oximeter is one way to measure oxygen levels and track reading changes with different levels of activity. Always discuss oximeter use and your oxygen prescription with your physician.

Learn more about living with oxygen and how to better manage your next trip

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Receiving a diagnosis of idiopathic pulmonary fibrosis (IPF) can be overwhelming. Understanding your disease and the associated symptoms will provide you with the tools to effectively communicate with your healthcare team, thereby promoting your quality of life.

Three Pillars of IPF Management

Your healthcare team can help manage your IPF in three important ways: disease management, education and planning, and symptom management (also called palliative (PAL-ee-uh-tiv) care).

	Disease Management Disease management comes from a healthcare team-based comprehensive approach to managing IPF and its symptoms. Disease management includes medications, pulmonary rehabilitation, supplemental oxygen, and managing any other health problems you may have. Ongoing communication with your healthcare team (doctors, nurses, social worker, pharmacist, etc.) is important to ensure you’re getting the appropriate care at all times.
	Education and Planning Education and planning comes from the partnership you establish with your healthcare team. Understanding important information about IPF, common symptoms, and disease progression (the worsening of a disease over time) and calling your healthcare team/provider with any worsening symptoms will help to prevent unnecessary complications and maintain control over your care. Together, these strategies may help ease your emotional concerns.
	Symptom Management Symptom management, or palliative care, is an important component of living well with IPF. Equipping yourself with the understanding and knowledge of disease management and relying on the education and planning about your condition allow you to recognize and report early signs and symptoms to your healthcare team. Early and prompt symptom management reduces the effects of disease progression and disability, and it is key in maintaining control of your care, which may enable you to engage in meaningful and important activities.

As a patient diagnosed with idiopathic pulmonary fibrosis (IPF), sometimes it’s hard to remember that you’re not alone. Chances are, your caregivers are also greatly affected by the diagnosis of your disease and what that means on a daily basis for you, for them, and for the future. And, while your caregivers are doing what they can to manage your needs on a daily basis, studies tell us they often neglect their own.

What You and Your Caregiver Can Do Together

Sometimes the most difficult challenges can be the kind we don’t see, but experience internally. When it comes to managing the physical and emotional stress that can accompany a diagnosis of a debilitating illness like IPF, both patient and caregiver play important roles.

Open Up Communication	Sharing what you’re going through, listening to what the other is experiencing, and expressing gratitude for the time you spend together can be powerful catalysts for healing and building stronger bonds.
Connect	Patients and their caregivers are more likely to experience a greater sense of well-being when shared experiences are meaningful to both. Visiting family and friends, attending spiritual events, and even sharing good memories can promote a deeper sense of fulfillment.
Make Important Decisions Now	According to The Conversation Project National Survey 2013, 90% of participants agreed that talking with their loved ones about end-of-life care is important, but only 27% had actually done so. Taking care of practical details such as property, finances, legal documents, and even the type of care you want in the future can be a tremendous relief for you, your family, and your caregivers.

When you find out you have idiopathic pulmonary fibrosis (IPF), it’s possible that the furthest thing from your mind may be the financial, insurance, and legal issues that will arise over time. But there can be many. There may be legal considerations, such as “Who should be in charge of my care when I can no longer be?” and “Who will take care of my house?” You also may want to find out what aspects of care your insurance provider will cover. In addition, you may want to ask yourself questions such as “How do I want to spend my final days?” and “Should I go into hospice care?” Below are a few things for you to consider:

Insurance Issues

Financial and Legal Issues

It may be a good idea to get your financial and legal paperwork in order. This is a good time to make sure your wishes have been captured accurately with your financial and/or legal advisor as appropriate. It’s also a good time to consider the wishes and needs of your family members as well. Here are some steps you should take:

The term “palliative (PAL-ee-uh-tiv) care” is generally used to describe the effective management of common symptoms associated with a serious illness. The goal of palliative care is to improve or maintain a person’s quality of life throughout the disease experience. Palliative care comes from a coordinated, comprehensive approach to effectively manage your disease and its symptoms by all members of the healthcare team.

For people living with idiopathic pulmonary fibrosis (IPF), palliative care is considered a key component in the effective management of common symptoms. Palliative care should not be confused with end-of-life or hospice care. Instead, palliative care is used together with disease management and focuses on the whole person—the physical, emotional, spiritual, and social aspects that are individually important to you. Palliative care can begin at any time during your disease. Because it may help with many of your symptoms, it’s best to begin palliative care as early as possible.

The healthcare team works together to provide palliative care in the routine medical management of IPF.

Together with the healthcare team, the goal of palliative care is to effectively manage the disease and its symptoms so that you may be able to do what is important and meaningful to you throughout the disease experience. It is important to discuss and establish a palliative care plan with your healthcare provider. This will allow you to remain actively involved in your care and maintain control. Research has shown that patients who utilize palliative care experience improved quality of life.

As idiopathic pulmonary fibrosis (IPF) progresses, it’s important to understand your care options. Hospice care is often introduced at the end of life for those with a prognosis of 6 months or less. Admission into hospice requires referral and certification by a medical professional. The hospice team provides ongoing symptom management and offers emotional and spiritual support, promoting peace and comfort. This support is tailored to each patient’s unique needs and wishes.

Here's what you can expect from hospice care:

If you’re interested in learning more about hospice care, be sure to talk with your healthcare team.

Going through the process to diagnose idiopathic pulmonary fibrosis (IPF) can be frustrating. One survey found it took a median of 7 months to receive a correct diagnosis after symptoms occur, but for some it can take over 3 years. But by learning about the disease, how it’s diagnosed, and how to manage it, you can be better prepared to deal with the challenges IPF brings.

What It Takes to Diagnose IPF

Diagnosing IPF often requires a physical examination, a review of your medical history, and a variety of tests.

Medical History (past and present): Medical procedures Prescribed medications Potential environmental exposure Family medical history

Commonly Performed Tests: Blood tests Pulmonary function tests Chest x-rays (radiographs) A high-resolution CT scan (HRCT) A lung biopsy A bronchoscopy (examination of the airway) Read more about these tests

Medical History (past and present):

Medical procedures Prescribed medications Potential environmental exposure Family medical history

Commonly Performed Tests:

Blood tests Pulmonary function tests Chest x-rays (radiographs) A high-resolution CT scan (HRCT) A lung biopsy A bronchoscopy (examination of the airway) Read more about these tests

What It Takes to Manage Your IPF

Once you've been diagnosed with IPF, you'll want to read up on the medical treatment options available to you, start monitoring and recording your symptoms, and prepare questions for your doctor. This will allow you and your medical team to better design the right program for you and to determine how well you're responding to treatment.

Talk with your doctor about how frequently you should be examined, and what you can do to best manage your disease.

Treating Your IPF Is Possible

There are therapeutic strategies and treatments available that can help you manage your disease, including FDA-approved drugs.

Looking to learn about an FDA-approved treatment for IPF?

Find out more

Each IPF patient has unique needs depending on their medical history and other existing conditions. Therefore, your doctor’s approach to managing your disease will be designed to meet your specific needs.

Treatment May Include:

Lifestyle and Therapeutic Options

Pulmonary rehabilitation, oxygen therapy, and disciplined nutrition and other lifestyle changes might be part of your daily prescribed disease treatment plan.

Medical and Surgical Options

In addition to lifestyle changes and non-medical options, prescription medications may also be prescribed to help you with your IPF. Currently, there are FDA-approved drugs for IPF that reduce the decline in lung function and work to slow the progression of IPF. How do they do this? By slowing the decline in forced vital capacity (FVC). Talk to your doctor to find out if treatment is right for you.

Some patients may also be candidates for clinical trials. And for certain patients, lung transplantation may be an option.

There Are Things You Can Do to Help Manage Your IPF

	Get Informed and Stay Informed Research, reach out, and connect with experts and online resources. The more informed patients with IPF are, the better they are able to manage the many physical, emotional, and spiritual challenges they and their loved ones experience throughout their IPF journey.
	Monitor and Track Your Symptoms Keeping in tune with your body daily is important. You may want to record changes in a whole host of symptoms, including: coughing, aches and pains, and your mood, along with any symptoms or side effects you might experience in relation to things like exercise, supplemental oxygen, and medication.

It could be helpful to record your symptoms and how your body is feeling.

Download Our Symptom Tracker to Get Started

Know What to Ask Your Doctor Begin a more meaningful conversation with your doctor by coming prepared with questions about IPF. Conversation Starters: What does IPF do to my lungs? Which diagnostic tests do you recommend? What course of treatment is right for me? Am I a candidate for supplemental oxygen? Am I a candidate for lung surgery? Is a clinical trial right for me? How often should I have follow-up exams and tests?

Follow Your Doctor's Plan You and your doctor can work together to create a course of action with your unique situation in mind. By following a customized plan, you'll be better prepared to deal with IPF and the difficulties it brings. Learn more about creating your own Daily Roadmap.