201

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.

“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

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.

IPF Patient with Supplemental Oxygen Therapy

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

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

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, Icon

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, Icon

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:

Prescribing Oxygen Therapy
  • 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, Icon

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, Icon

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, Icon

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

Download Tip Sheet

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239

People living with idiopathic pulmonary fibrosis (IPF) must face the distressing fact that their lifespan will almost certainly be shortened. This means that they may need to consider issues and preferences about their end-of-life care sooner than most people normally would.

Being uncertain about the future is a major source of stress for people with IPF and their caregivers. It’s normal for patients to fear that their symptoms may not be controlled toward the end and that breathing will become a painful struggle. Like anyone, people with IPF also want their passing to be peaceful. You should talk to your doctor about these concerns because he or she will work with you to try to help you manage breathing difficulties, pain, or discomfort as much as possible.

Starting the Conversation

Experts recommend that IPF patients and their doctors start the conversation about end-of-life issues before hospice care is required. This is believed to be a good way to avoid an additional source of stress. Your healthcare team can help by addressing end-of-life planning needs, such as:

  • Managing your symptoms and the relief of suffering

  • Documenting your wishes regarding:

    • Your preferred place of care during your final months

    • What (if any) life-supporting measures you’d like to have taken

    • Where you’d prefer to be at the very end (at home vs a medical facility)

This conversation should be ongoing throughout your care because your needs and wishes may change over time.

As IPF progresses, symptoms make it increasingly difficult for IPF patients to carry out daily activities. But your healthcare team can use a wide variety of approaches to address the unique physical, psychological, and spiritual needs you will have when the time comes.

Since there is no known cure for IPF, as the disease progresses, eventually your only options may be palliative (PAL-ee-uh-tiv) care and/or hospice care. Palliative care can begin anytime a patient needs help with achieving comfort, and it is now recommended as a routine part of the care of people with IPF. Hospice care is typically reserved for patients who are believed to have 6 months or less remaining. (Learn more about palliative and hospice care.)

Dr. MaryLuz Fuentes’ Story

See how MaryLuz—a doctor, mother, and patient with IPF—learned to cope with the disease. Watch other videos about IPF

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97

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.

Understanding Goes a Long Way

Recognizing the stresses your caregivers experience can make a big difference in improving their health and your relationship with them, which can translate into spending more enjoyable and meaningful time together.

Caregivers may neglect to see their doctor, suffer from depression and feelings of isolation, and feel their independence and social lives are compromised. But there’s a lot you and your caregiver can do to combat these feelings, including: getting someone else to pitch in, appreciating and respecting one another, sharing meaningful experiences, living with purpose every day, and making sure your caregiver’s needs are met.

Top 5 Things Your Caregiver Needs to Thrive

  • #1 Proper rest, sleep, and nutrition.
  • #2 The time to do things they enjoy.
  • #3 Experiences that have relevance and purpose.
  • #4 A network of compassionate and supportive people.
  • #5 Shared responsibilities.

Helping Your Caregiver Avoid Burnout

It’s not always easy for a caregiver to ask for help. Fortunately, there are support groups rich in resources that can provide a healthy outlet, timely information, and valuable coping tools—all in a caring environment. Have your caregiver ask your doctor for support groups near you, or visit the many online forums available.

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, Icon

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 with Caregiver, Icon

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, Icon

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.

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97

EXPLORE IPF SURVEY FACT SHEET

The EXPLORE IPF survey investigated the needs, experiences, and feelings of patients living with idiopathic pulmonary fibrosis (IPF) and their caregivers. It was led by a multidisciplinary Advisory Committee that includes IPF thought leaders and advocates dedicated to addressing the unmet needs of the IPF community. The survey was conducted among 100 patients with IPF and 100 caregivers, all self-reported.

The survey showed that patients and caregivers experience a significant emotional burden and feel that more support and resources can help with the challenges associated with IPF. Raising awareness of the disease's impact can help address the needs of IPF patients and their caregivers, healthcare professionals, and advocates.

TAKING ACTION

Members of the EXPLORE IPF Advisory Committee recommend that the survey results be used to:

EDUCATE THE GENERAL PUBLIC ABOUT IPF TO:

  • Know the signs and symptoms
  • See a doctor when experiencing possible symptoms
  • Decrease stigma associated with the disease
  • Inform healthcare professionals, including primary care providers, to consider referral of patients to pulmonologists specialized in distinguishing IPF from other diseases
  • Improve the dialogue between healthcare providers and patients/caregivers to speed diagnosis, provide understanding of IPF upon diagnosis and continue ongoing support and comfort after diagnosis
  • Create information, resources and support networks for patients and caregivers

KEY SURVEY FINDINGS

The road to an IPF diagnosis is long and frustrating. Patients who seek medical care for symptoms of IPF often see multiple doctors over many months before receiving the right diagnosis.

  • Patients suffer, on average, for 1.9 years (23 months) before being diagnosed with IPF
  • Patients saw, on average, approximately 2 doctors (2-3) before receiving an IPF diagnosis
  • Half of patients (52%) and caregivers (50%) had difficulty finding a doctor who was knowledgeable about IPF
  • Nearly all patients (97%) wished they knew what was causing their symptoms earlier (Figure 1)
  • 9 in 10 patients (93%) agreed better education of medical professionals could improve the time it takes to diagnose and manage IPF (Figure 2)

Most People Do Not Understand IPF
or How It Will Impact Their Lives

Patients and caregivers often begin the IPF journey with low understanding about the disease and the impact it will have on their lives, both physically and emotionally.

  • 9 in 10 patients (89%) had never heard of IPF before being diagnosed (Figure 3)
    Explore IPF Figure 3
  • 79% of patients did not initially understand the severity of their diagnosis (Figure 4)
    Explore IPF Figure 4 Explore IPF Figure 3 and 4
  • Nearly three-quarters of patients (73%) and caregivers (82%) did not understand the emotional toll IPF would have on them (Figure 5)
    Explore IPF Figure 5 Explore IPF Figure 5

Patients Feel Isolated, Stigmatized and Embarrassed

Even as patients begin to understand the complexity of IPF after their diagnosis, other challenges begin to emerge.

BEFORE EXPERIENCING IPF SYMPTOMS

  • 2 out of 3 patients were satisfied with their life, particularly their spirituality/religious faith and ability to travel
  • Less than one in three patients reported experiencing negative emotions

After Being Diagnosed with IPF

  • Nearly 7 in 10 (67%) felt powerless because there is nothing they can do
  • More than half of patients (52%) believed they had become a burden on family and friends
  • More than 7 in 10 (77%) reported difficulty finding other IPF sufferers with whom they could connect
  • More than 9 in 10 (93%) patients who experienced coughing reported that they are embarrassed by not being able to control their coughing (Figure 6)
    Explore IPF Figure 6
  • More than 7 in 10 (76%) patients who experienced coughing believed that people often keep a distance because of their coughing (Figure 7)
    Explore IPF Figure 7
  • Nearly 7 in 10 (69%) patients who tried supplemental oxygen felt embarrassed by it (Figure 8)
    Explore IPF Figure 8
Explore IPF Figure 6, Figure 7 and Figure 8

The Lives of Caregivers Change After a Diagnosis

While IPF takes a significant toll on patients, it also affects caregivers, who experience a more dramatic emotional shift following their loved one’s diagnosis of IPF.

  • Most caregivers were satisfied with their sense of independence (84%) and their social life (85%) before an IPF diagnosis (Figure 9) — following diagnosis less than four out of 10 caregivers reported feeling satisfied with their sense of independence (39%) and their social life (38%) (Figure 10) Explore IPF Figure 9 and Figure 10
  • 64% of caregivers said it was difficult to find other IPF caregivers to talk to or connect with
  • When asked to describe their lives today (post-diagnosis) in one word, caregivers most often cited ‘hectic’ or ‘stressful’
Explore IPF Figure 9 and Figure 10

People Need Information on How to Manage Their Disease

In addition to the psychosocial support, patients and caregivers suffer from a lack of information on disease management. This type of information may help better equip them to face their condition and engage their families and friends for ongoing support.

  • 7 in 10 patients (72%) agreed that better disease management can help improve overall well-being
  • Over half of patients (53%) and caregivers (55%) indicated that a better understanding of the steps they can take to help manage IPF symptoms can help improve overall well-being
  • 7 in 10 patients (70%) and 3 in 4 caregivers (75%) agreed that in-person and online support groups would be helpful (Figure 11)
Explore IPF Figure 11
  • 7 in 10 patients (68%) reported that it was a struggle telling friends and family about their IPF, suggesting that support materials would be an important resource for patients

ABOUT THE EXPLORE IPF SURVEY

The Advisory Committee, which was responsible for the development and contextualization of the survey, include:

  • Jeffrey James Swigris, DO, MS, associate professor of medicine, Autoimmune Lung Center and Interstitial Lung Disease Program, National Jewish Health
  • Richard Kradin, MD, pulmonologist and psychiatrist, Pulmonary and Critical Care Unit, Massachusetts General Hospital
  • Dolly Kervitsky, RCP, CCRC, nationally recognized patient advocate
  • Carolyn Spada, RN, BSN, interstitial lung disease nurse coordinator, The Center for Interstitial Lung Disease, University of Washington Medical Center
  • Jennifer Hayes, RN, BSN, interstitial lung disease nurse coordinator, The Center for Interstitial Lung Disease, University of Washington Medical Center
  • John Morthanos, New Haven, CT, IPF patient
  • Craig Conoscenti, MD, FCCP, Director, Idiopathic Pulmonary Fibrosis Program Lead, Clinical Development and Medical Affairs, Respiratory, Boehringer Ingelheim Pharmaceuticals, Inc.
  • Dale Baird, Associate Director, Pipeline Market Research, Boehringer Ingelheim Pharmaceuticals, Inc

EXPLORE IPF is a national survey examining the emotional burden facing patients and caregivers living with IPF through the phases of diagnosis.

The survey was conducted by research company Taylor Nelson Sofres (TNS) and sponsored by Boehringer Ingelheim. The survey was conducted between April 14, 2014 and May 15, 2014 among 100 patients with IPF and 100 caregivers, all self-reported and age 18 and over in the United States. Respondents completed a 15-minute online survey exploring their IPF journey, retrospectively.

Results were weighted by gender, race and region to provide representative IPF population sampling.

REFERENCE

BI data on file. EXPLORE IPF Survey Results.
THIS INFORMATION IS FOR U.S. RESIDENTS ONLY.
COPYRIGHT © 2015, BOEHRINGER INGELHEIM PHARMACEUTICALS, INC. ALL RIGHTS RESERVED.

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216

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

  • Determine your insurance coverage now and going forward. Depending on your age and employment status at the time you are diagnosed, your insurance may change as your condition progresses

  • Review your private health insurance plan. If you are under age 65, this will be your primary source of coverage; private plans offer varying coverage, especially concerning experimental treatments and services such as hospice care. (Learn about palliative and hospice care.) Most plans cover nursing homes, assisted-living centers, and home care to some degree

  • Look into Medicare and Medicaid. Even if you’re not eligible yet, you should get familiar with what Medicare and Medicaid cover:

    • Medicare offers basic healthcare benefits to persons over age 65 as well as to those who have received Social Security disability benefits for at least 2 years

    • Medicare covers hospice for persons with life-limiting illnesses

    • Medicaid provides coverage for low-income adults, including older or disabled persons. Eligibility criteria vary from state to state. Most state Medicaid programs include hospice benefits

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. 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:

  • Get your financial and personal records (bank and investment account numbers, loans, deeds, birth certificates, adoption papers, etc.) in order and store them in a safe place

  • Create a will

  • Create a living will (also known as advance directive) that outlines your end-of-life medical care choices

  • Designate a power of attorney—someone you trust to make financial and healthcare decisions for you if you are unable to

  • Consider making memorial and burial plans

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42

As idiopathic pulmonary fibrosis (IPF) progresses, eventually your main options may be palliative (PAL-ee-uh-tiv) care and/or hospice care. Palliative care is often wrongly associated with “the beginning of the end.”

In fact, palliative care can begin anytime a patient needs help with achieving comfort, and it is now recommended as a routine part of the care of IPF patients. Pulmonary rehabilitation, which has been shown to reduce breathlessness, anxiety, and depression in some people with IPF, is actually a form of palliative care. It can also be an appropriate setting for discussions about the concept of palliative care and end-of-life planning. Hospice is typically reserved for patients who are believed to have less than 6 months of life remaining.

Understanding Palliative and Hospice Care

The table below highlights some of the similarities and differences between the 2 approaches:

Palliative Care Hospice Care
-

Goal: To relieve pain or other distressing symptoms, and improve comfort and quality of life

 -

Goal: To help people who are dying have peace, comfort, and dignity
-

Who is it for: Any person who is able to use it to reduce the negative impact that IPF symptoms may have on his or her daily life

 -

Who is it for: Typically reserved for people who have less than 6 months to live, although many patients are not put into hospice until later
-

Who is involved: Team members with a variety of skills, including physicians, pharmacists, nurses, religious leaders, social workers, psychologists, and other healthcare professionals

 -

Who is involved: Medical professionals and social workers
-

Where it is given: Can be administered at home or in an institution

 -

Where it is given: At a dedicated hospice center, but can also be done in nursing facilities, hospitals, or at home
-

What it provides: Physical and spiritual care, development of support systems; encourages an active lifestyle

 -

What it provides: Treatments to control pain and other symptoms to maintain comfort: may incorporate forms of palliative care; also provides support to families
-

Coverage: Varies by type of insurance

 -

Coverage: Medicare offers hospice care as a key benefit for people with life-limiting illnesses such as IPF. Most state Medicaid programs include hospice benefits, as do most private health insurance plans, although coverage varies

Of course, these are just suggestions. You should always consult a legal professional for legal advice, your insurance agent for insurance coverage details, and your healthcare professional for medical advice.

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445

Going through the process to diagnose idiopathic pulmonary fibrosis (IPF) can be frustrating. On average, patients experience symptoms for nearly 2 years before being diagnosed. 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, Icon

Medical History (past and present):
  • Medical procedures
  • Prescribed medications
  • Potential environmental exposure
  • Family medical history
Common IPF Tests, Icon

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, Icon

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



Common IPF Tests, Icon

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.


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 can help to lower your risk of complications and increase the success of your IPF treatment. You will 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.

Connie’s Story—Getting Answers

See how one patient took control of her health by continually pushing for answers. Watch other videos about IPF

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303

When facing a rare and serious lung disease such as idiopathic pulmonary fibrosis (IPF), it’s important to get the best possible care. However, primary care doctors may have limited experience with IPF. Plus, because IPF is so rare, many experienced pulmonologists may have had limited opportunity to treat many IPF patients themselves. This is why you may want to try to find a pulmonologist who has experience caring for patients with IPF.

Tips for Getting the Most from Your Doctor Visit

The suggestions below are based on publications by the Agency of Healthcare Research and Quality and The Joint Commission. Note that these are general guidelines for any patient and are not specific to people with IPF.

  • Don’t be afraid to ask questions. If you do not understand something about your disease, or instructions you have just been given, don’t hesitate to ask your doctor or other healthcare provider to explain it further. Asking questions and sharing information may help improve the quality of the care you get

  • Come to your visits prepared. You may find it helpful to write down questions in between appointments, and bring the list of questions with you. Since time with your doctor is always limited, this will help you make the most of it; also, write down a list of any medicines you are currently taking

  • Bring a notepad. You may find that at some of your appointments, you’ll be given what seems like an overwhelming amount of information. It’s OK for you to take notes to help you follow important instructions and information in the future

  • Bring someone with you. A friend, family member, or other caregiver may be able to help by taking notes, scheduling appointments, and by giving the doctor another point of view on how you are living with your disease or what effect a treatment may be having

  • Follow up with your doctor. If you need further explanation about your condition or instructions for care once you get home, call your doctor. Also, ask about the results of any tests your doctor may have performed and any next steps you need to take. Always call your doctor if your symptoms get worse

Other Things You Can Do

  • IPF Advice from Your DoctorReach out to the IPF community. You may find it useful to contact IPF advocacy and support groups to get advice and tips that can help you manage your symptoms. You may also get answers or advice that you’ll want to run by your doctor. Sometimes, it’s also nice just to connect with other people who truly understand what you’re going through. (Connect with other people living with IPF. Learn about online support groups)

  • Don’t stop learning. Knowing as much as you can about IPF and how it will affect you will let you:

    • Set realistic goals

    • Make meaningful choices

    • Remain in control of your care longer

    • Enjoy daily activities for as long as possible

  • Always be sure to go to reliable, respected sources for your healthcare information.

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611

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:

  1. Find out all you possibly can about IPF:
    The fact that you are here at this site means that you’ve already begun learning more about IPF. Of course, your primary source for information about IPF should always be your doctor. He or she will give you information about the disease and help treat your IPF with a plan that is customized just for you. Other sources, both online and offline (such as support group meetings), can give you even more information. The more aware you become of IPF and treatment options, the more of a role you can play in your own care.

  2. Find the right pulmonologist:
    Pulmonologists are experts in lung function and, while they won’t be able to cure the disease, they are the type of specialist who may be best equipped to manage your IPF symptoms. Not all pulmonologists are experts in IPF, however, so you may want to seek out pulmonologists who have experience treating patients with IPF.

  3. Ask about IPF treatment centers:
    Another option to consider is IPF treatment centers. These are medical centers that specialize in treating this rare disease. There are a few located throughout the country, so you should ask your doctor if there is one near where you live.

    The Pulmonary Fibrosis Foundation has put together a list of medical centers that they believe have demonstrated expertise in diagnosing and treating PF. To find one near you, visit the list of Medical Centers Specializing in PF Care page at PulmonaryFibrosis.org.

  4. Reach out to support communities:
    There are a number of IPF support communities you can join for free. These allow you to connect with other people who may be able to relate to what you’re going through and who may have helpful tips on meeting the day-to-day challenges of living with IPF. (Connect with other people living with IPF. Learn about online support groups.)

  5. Talk to family and friends about IPF:
    As with other serious diseases, many people living with IPF find that they can turn to their family and friends for support and help in facing the daily challenges of living with IPF. Of course, every family is different, and it may take some time for you to figure out who to turn to and how much you can expect them to help.

The Caregiver’s Role

See how the husband and daughter of a person with IPF help to provide the support she needs to overcome the challenges of life with IPF. Watch other videos about IPF

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720

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:

  • Exhaustion from simple, normal activities

  • Anxiety and fear of anticipating a decline in their ability to function

  • Fear of becoming a burden on family and friends

  • Feeling less sexually attractive (especially if using oxygen therapy)

  • Concern about using up family financial resources on healthcare costs

  • Less desire to participate in social activities

  • Difficulty maintaining relationships

  • No longer desiring to travel because it is too burdensome

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

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:

  • Feelings of hopelessness and helplessness

  • Change in sleep patterns

  • Weight gain or weight loss

  • Loss of pleasure or interest in things you usually like to do

  • Social isolation

  • Fatigue

  • Feelings of worthlessness

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 vaccinated. It’s recommended that all people with IPF receive a yearly flu vaccine and a pneumonia vaccine every 5 years; vaccination is critically important to preventing illnesses that can further worsen lung function

  • Take part in pulmonary rehabilitation (when prescribed). Pulmonary rehab has been shown to improve the ability to exercise in people with IPF; it also has been shown to improve a person’s understanding of IPF and reduce their anxiety and depression about it. (Learn more about pulmonary rehabilitation)

  • Use oxygen therapy. If your doctor has prescribed oxygen therapy, you should use it according to your doctor’s instructions. Many people with IPF find that oxygen therapy helps reduce their feelings of breathlessness. (Learn more about oxygen therapy)

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)

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