282

Article coauthored by
Dr. Kim Kuebler
Dr. Kim Kuebler DNP, APRN, ANP-BC
Director and Founder Multiple Chronic Conditions Resource Center
CEO Advanced Disease Concepts
Primary Care Provider, Grants Pass Community-Based Outpatient & Clinic, Veterans Affairs Southern Oregon Rehabilitation Center & Clinics


Dr. Lanier O'Hare
Lanier O’Hare, MSN, CRNP
Nurse Practitioner - Sarcoidosis and ILD Clinics
Interstitial Lung Disease Program
Department of Medicine
University of Alabama at Birmingham

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.

THE THREE PILLARS OF IPF MANAGEMENT (DISEASE MANAGEMENT, EDUCATION AND PLANNING, AND SYMPTOM MANAGEMENT) ARE
MOST EFFECTIVE WHEN USED TOGETHER.

Once you receive a confirmed diagnosis of IPF, your healthcare team will provide additional information about IPF, common symptoms, and disease progression. Together with your healthcare team, you can develop an individualized IPF care plan. Being an active participant in developing your care plan together with your healthcare team allows you to maintain control of your care and ensures your optimal quality of life.

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115

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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134

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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264

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 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:

  • 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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13

Article coauthored by
Dr. Kim Kuebler
Dr. Kim Kuebler DNP, APRN, ANP-BC
Director and Founder Multiple Chronic Conditions Resource Center
CEO Advanced Disease Concepts
Primary Care Provider, Grants Pass Community-Based Outpatient & Clinic, Veterans Affairs Southern Oregon Rehabilitation Center & Clinics


Dr. Lanier O'Hare
Lanier O’Hare, MSN, CRNP
Nurse Practitioner - Sarcoidosis and ILD Clinics
Interstitial Lung Disease Program
Department of Medicine
University of Alabama at Birmingham

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.

EACH MEMBER OF YOUR HEALTHCARE TEAM WORKS TOGETHER TO SUPPORT YOUR EMOTIONAL, PHYSICAL, AND SOCIAL NEEDS THROUGHOUT THE MANAGEMENT OF YOUR CARE.

Palliative Care Focuses on the Whole Person


IPF Physical Palliative Care

Palliative care addresses the physical aspects of IPF. Physical aspects include management of the disease and its symptoms, such as shortness of breath, fatigue, weakness, cough, and insomnia. Palliative care is key when identifying and managing side effects associated with therapy and/or specific medications.

IPF Emotional Palliative Care

Palliative care provides support to the emotional aspects of living with IPF. Emotional aspects can include stress, anxiety, worry, and depression. Prompt recognition and early intervention are key in maintaining a sense of well-being.

IPF Spiritual Palliative Care

Palliative care ensures and promotes your individualized spiritual and religious beliefs in care planning. Your healthcare team recognizes the importance and value this has on determining specific treatment decisions that are important and meaningful to you.

IPF Social Palliative Care

Palliative care recognizes the value of socialization. Effective disease and symptom management promotes physical functioning, which may allow you to engage in social activities that are important and meaningful to you. Socialization can be life-affirming and important in maintaining relationships and associations.

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

PALLIATIVE CARE PLACES YOU AT THE CENTER—
YOU ARE IN CHARGE OF YOUR HEALTHCARE.

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.

Beginning Palliative Care Early

Palliative care, or symptom management, works best when addressed soon after diagnosis with IPF. Research data suggests patients who began palliative care earlier in the courses of their disease had better quality of life than those who waited. This included improvements in symptoms such as anxiety, depression, and shortness of breath.

As IPF progresses over time, so do the symptoms. Your medical provider may adjust palliative care interventions to ensure symptoms are well managed. Palliative care interventions may intensify as the disease progresses and are often combined with hospice and end-of-life care.

Getting Started with Palliative Care for Your IPF

Your healthcare team is a good source of information about palliative care options. Taking control and being actively involved in your healthcare is important. Having meaningful discussions with your medical provider is key when determining their role in your symptom management. You may require a referral to a palliative care team within your community. Many medical centers offer a specialized palliative care team that includes doctors, nurses, social workers, pharmacists, chaplains, and other professionals.

MAKE SURE TO CHECK WITH YOUR INSURANCE CARRIER TO BETTER UNDERSTAND COVERAGE FOR PALLIATIVE CARE.

While disease and symptom management costs are routinely covered by insurance carriers, other types of supportive treatment, such as counseling or behavioral health, may not be reimbursable. In addition, you may have spending limits or high deductibles, depending on your unique plan.

Remember, palliative care should not be confused with hospice care or end-of-life care. Instead, it is a key component of your care to effectively manage common IPF symptoms and improve overall quality of life. Palliative care is an additional layer of support to your IPF care.

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11

Article coauthored by
Dr. Kim Kuebler
Dr. Kim Kuebler DNP, APRN, ANP-BC
Director and Founder Multiple Chronic Conditions Resource Center
CEO Advanced Disease Concepts
Primary Care Provider, Grants Pass Community-Based Outpatient & Clinic, Veterans Affairs Southern Oregon Rehabilitation Center & Clinics


Dr. Lanier O'Hare
Lanier O’Hare, MSN, CRNP
Nurse Practitioner - Sarcoidosis and ILD Clinics
Interstitial Lung Disease Program
Department of Medicine
University of Alabama at Birmingham

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:

Hospice Care
-

Goal: To help people who are facing the end of life have peace, comfort, and dignity
-

Who is it for: Typically reserved for people who have 6 months or less to live. It is focused on patient and family
-

Who is involved: Medical professionals, nurses, spiritual advisors, and social workers
-

Where it is given: Home care, inpatient hospice, long-term care facilities, and designated hospital beds
-

What it provides: Intensified palliative care interventions used to control pain and other symptoms to maintain and promote comfort
-

Coverage: Medicare offers hospice care as a key benefit for people with potentially life-limiting illnesses such as IPF. State Medicaid programs and private health insurance plans include hospice benefits, depending on the plan

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

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501

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, 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 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.

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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385

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.

While there is no cure for IPF, there is a treatment available that may help to slow the progression of the disease.

Read About a Treatment for 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.

  • 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.

  • 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.

  • 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 Doctor

  • Reach 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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807

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

  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 IPF treatment centers available at the 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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829

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:

  • Breathlessness 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.

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:

  • Feelings of guilt, worthlessness, or helplessness

  • Eating more or less than usual

  • No longer wanting to do activities once liked to do

  • Feeling irritable, frustrated, or restless

  • Feeling tired, even if you got enough sleep

  • Having suicidal thoughts

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 pneumonia vaccines; 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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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.

 
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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

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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.

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.

How Oxygen Can Help

Learn how oxygen therapy can help to manage your IPF symptoms from a nurse practitioner who specializes in pulmonary rehabilitation. Watch other videos about IPF

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

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