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If you’ve been diagnosed with IPF, your doctor will likely use tests to track how the disease progresses over time. Knowing how your condition is changing over time can help you and your doctor make informed treatment decisions.

You can find a list below of some of the tests your doctor may use. Note that this is just for your information. Your doctor may not use all of these. They may even employ tests not listed here.

Medical Tests Used to Track the Progression of IPF

High-Resolution Computerized Tomography (HRCT) Scan of the Lungs

Offers a detailed lung image to help your physician see how scarring of the lungs has progressed.

Lung Function Test

Used to measure how much air you can blow out of your lungs. The amount of air will likely decrease as IPF progresses.

Pulse Oximetry

Involves the use of a small sensor placed on your fingertip or earlobe. It uses light to measure the amount of oxygen in your blood.

You can also take part in tracking your IPF by keeping a record of your symptoms over time. Use our Symptom Tracker to document how you’re feeling each day to be shared with your doctor.

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There are things you can do to help manage idiopathic pulmonary fibrosis (IPF) symptoms and try to sustain your ability to perform daily activities for as long as possible.

Understanding and Managing IPF Symptoms Improves Quality of Life, Patients and Caregivers

53% of patients and 55% of caregivers believe a better understanding of managing IPF symptoms can help improve overall well-being

The approaches used to manage the symptoms of IPF are designed to meet each patient’s unique needs. Every person’s medical history is different. In addition, people with IPF frequently suffer from other medical conditions. These other conditions may have an impact on the course of IPF. (See "Managing other conditions" below.)

It’s also important to remember that each patient experiences IPF differently, and while some people with IPF don’t live long after getting their diagnosis, others may live longer than the often-quoted averages. Working together, you and your doctor can develop a plan to help you manage your symptoms in an effort to sustain your ability to participate in daily activities for as long as possible. Common approaches to managing IPF symptoms are listed below.

Summary of Options for Managing IPF Symptoms

Pulmonary Rehabilitation Icon

Pulmonary Rehabilitation

Includes a range of conditioning and breathing exercises

The goal is to help patients function to the best of their ability
Learn more

Oxygen Therapy, Icon

Oxygen Therapy

Recommended for patients who have low oxygen levels

May help reduce breathlessness, enabling the patient to take part in pulmonary rehab exercises
Learn more

Lung transplant, Icon

Lung Transplant

Can improve both life expectancy and ability to participate in daily activities

Reserved for patients who have no other significant health problems, such as cancer; heart, liver, or kidney disease; or chronic infection, among others

IPF is now the leading reason for lung transplantation in the US

Lung transplantation has significant risks, including illness or fatality from the surgical procedure itself, infection, and cancer due to the use of drugs that suppress the immune system; you should discuss these risks with your doctor before considering a lung transplant
Learn more

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Clinical Trials

Taking part in clinical trials may be an option for some people with IPF

Talk with your healthcare team about your condition and your options

Managing Other Conditions

As mentioned above, it is common for people with IPF to also have other medical conditions (called “comorbidities”). These may include obesity, diabetes, pulmonary hypertension, obstructive sleep apnea, coronary artery disease, and emphysema.

These conditions will often require their own treatments and medicines. They may even have an impact on the course of IPF. Remember to always take your medicines as prescribed by your doctor.

If you have any questions about other health conditions you have, or the medicines you are taking for them, be sure to talk to your doctor.

Call IPFandYouTM to get personalized support and questions answered.

1-844-IPF-ANDU1-844-IPF-ANDU
(1-844-473-2638)

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146

If you've been diagnosed with idiopathic pulmonary fibrosis (IPF), then you're sure to have a lot of questions. People with IPF can experience a variety of physical and emotional challenges throughout the day , ranging from fatigue to powerful emotions and frustration. Understanding how IPF affects you as an individual will help you to better manage your symptoms and anticipate what lies ahead. The good news? People with IPF can play a big role in managing their IPF symptoms.

Customizing a Plan That Works For You

Because IPF disease affects each person differently and progresses at different rates, prescribed treatment plans are tailored to meet each person’s individual needs.

Create a personal action plan and set daily goals

Getting Involved in Your Own Treatment Makes a Difference

You are the biggest factor in managing your IPF treatment. As with all diseases, it is important to live a healthy lifestyle. Activities such as physical conditioning, breathing exercises, nutritional counseling, and anxiety, stress, and depression management may all be a part of your personal disease treatment plan your doctor may create for you.

There Are a Number of Things You Can Do to Help Manage Your IPF Symptoms:

Quit Smoking, Icon

Quit Smoking

If you're still smoking, the most important thing you can do is to seek help and stop smoking as soon as possible. Remember, additional potential benefits to quitting include: increased oxygen levels in your blood, lowered blood pressure, and improved circulation.

Eat Well, Icon

Eat Well

A healthy diet plays an essential role in your overall physical and mental health. A diet rich in nutrients and low in saturated fat, trans fat, cholesterol, salt, and added sugar, along with a healthy balance of fruits, vegetables, whole grains, lean meats, poultry, fish, beans, and fat-free or low-fat dairy products, will help you get the fuel you need throughout the day. Remember, eating several smaller meals (rather than a few large meals) may prevent feeling too full, which can make it hard to breathe.

Exercise, Icon

Exercise

A lack of exercise can work against people who have IPF, as inactivity weakens the muscles, making even the simplest activities more difficult. Developing an active lifestyle is often key in decreasing ‘air hunger' and strengthening the muscles to make them more resistant to fatigue. Regular exercise can help you develop the energy you need to accomplish daily tasks with less shortness of breath, and also help you to ease feelings of anxiety and depression.

Oxygen Therapy, Icon

Oxygen Therapy

Supplemental oxygen can make a substantial difference in a person’s ability to manage many of the lifestyle-altering effects that can accompany IPF. Oxygen therapy may provide the additional oxygen the body needs to help people with IPF maintain an active lifestyle, and can also decrease shortness of breath and the additional strain on the heart due to low oxygen saturation levels.

Get Rest, Icon

Get Rest

Getting at least eight hours of sleep every night can boost your overall sense of well-being. Rest can also help you deal with the stress of living with IPF.

Connect with Others, Icon

Connect with Others

Whether it's friends and family or support and advocacy groups, staying connected to others who can provide good company and a positive outlet for what you're going through can make a powerful difference in adding meaning to your life and helping you cope with living with IPF.

Manage Emotions, Icon

Manage Emotions

Psychological and spiritual support is often an important factor in keeping a positive outlook, reducing fears, and enhancing the daily lives of people with IPF. Keeping a positive attitude and staying relaxed may conserve valuable oxygen by avoiding its excessive use that can come with tension.

Create a personal action plan and set daily goals

Make the Most Out of Life

  • Take an active role in managing your own treatment.
  • Make key lifestyle changes.
  • Stay connected to friends and family.
  • Stay active to stay strong and reduce stress.
  • Stay informed and join support groups.

Creating a Personal Action Plan

The bigger the role you play in your treatment, the better. In addition to the Disease Treatment Plan your doctor creates for you, together you can also create a Personal Action Plan. This daily plan can make a big difference in helping you manage your day and help you feel better.

Most importantly, remember to focus on your life, not your condition. Prioritize the people and things in your life that bring you joy.

Learn what you can do to help manage your IPF today.

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Pulmonary rehabilitation (or “rehab”) is a term that covers many different approaches. The goals are to decrease the severity of breathlessness as much as possible during daily activity and to increase energy and activity levels in general. Pulmonary rehab is recommended for patients with idiopathic pulmonary fibrosis (IPF), but most studies of its effectiveness have been done in patients with chronic obstructive pulmonary disease (COPD). Your doctor may prescribe pulmonary rehab as an addition to other types of care. Not every patient is a candidate, however. It’s also important to understand that pulmonary rehab will not prevent the loss of lung function that occurs over time with IPF. It is extremely important to participate in pulmonary rehabilitation if recommended by your doctor.

Pulmonary rehab includes activities such as physical conditioning, exercise training, and breathing exercises. It may also include anxiety, stress, and depression management, as well as nutritional counseling, education, and other programs.

The Possible Benefits and Risks of Pulmonary Rehab

As mentioned above, pulmonary rehab has been studied as a treatment in several different lung diseases and shown to have benefits for many patients who use it. Although there are not as much data on pulmonary rehab for people with IPF, a number of studies have shown it to provide at least some benefits in IPF. These include:

  • Improved ability to perform daily activities with less breathlessness

  • Increased ability to exercise

  • Improved sense of well-being and a more positive outlook

  • More energy and an ability to do more

  • Reduced anxiety and depression

There are a few risks associated with pulmonary rehab that are generally related to the exercise part of the program. As with any physical training activity, muscle or bone injuries may occur. Also, for people with heart disease, physical activity can increase the risk of a heart attack or arrhythmia (irregular heartbeat). Your doctor will determine how much additional oxygen you need as your rehabilitation program is developed.

Although leading medical guidelines recommend that most patients with IPF receive pulmonary rehab, it may not be right for everyone. You should discuss the option of pulmonary rehab with your doctor to see if your condition allows it and if it might be of benefit to you.

A Team Effort

If your doctor decides that pulmonary rehab is right for you, you should know it involves working with a team of healthcare providers. This team may include nurses, respiratory therapists, physical therapists, social workers, dieticians, and others. It may also include several exercises and lifestyle changes at home. Working closely with your treatment team will help you to know what is expected of you.

Pulmonary Rehabilitation is a Team Effort

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376

Your body needs a certain amount of oxygen for its organs to function properly. But as idiopathic pulmonary fibrosis (IPF) progresses, the fibrosis prevents enough oxygen from being transferred into your bloodstream. This is why your doctor may prescribe supplemental oxygen therapy as part of your care. (Learn how your lungs work.)

Many IPF experts believe that all people with IPF should be evaluated to see whether oxygen therapy can help them improve their low oxygen levels. Low oxygen levels may occur during exercise, during sleep, or may be present when the person is at rest. When they occur will affect how often you need to use oxygen. Oxygen therapy has been demonstrated to be helpful to patients who have low oxygen levels across a variety of serious lung conditions. Even though the data supporting its use are limited, current medical guidelines recommend using oxygen therapy in appropriate patients with IPF.

Your doctor will use tests, such as an arterial blood gas test and a pulse oximetry test, to determine whether you need oxygen therapy and, if so, how often and how much. These tests measure how much oxygen is in your blood. A low level of oxygen is a sign that you need oxygen therapy.

How Oxygen Is Delivered

Oxygen therapy is provided in a metal cylinder or other container. It flows through a tube and is delivered to your lungs in one of the following ways:

Oxygen Therapy Tank

Nasal cannula

Two small plastic tubes, or prongs, that fit within both of your nostrils

Face mask

Fits over your nose and mouth and straps onto your head

Transtracheal (“tranz-TRAY-kee-ul”) oxygen therapy

A minor surgical procedure is performed to insert a small tube into your windpipe through the front of your neck

This is the least common form of oxygen therapy

Your doctor will work with you to determine which type of oxygen delivery device you should use, as well as how much oxygen you need and how often.

Learn tips for living and traveling with supplemental oxygen

The Possible Benefits and Risks of Oxygen Therapy

The use of supplemental oxygen in people with IPF who have low oxygen levels at rest has been shown to:

  • Reduce general breathlessness

  • Sustain their ability to perform activities (such as exercise) that may be part of a pulmonary rehabilitation program

  • Possibly maintain their ability to take part in daily activities in preparation for a lung transplant

In addition to reducing breathlessness, in studies of people using oxygen therapy to treat COPD, patients reported that oxygen therapy improved their ability to perform everyday activities such as cleaning, reading, and shaving.

However, it’s important to note that there are a number of risks that come along with using oxygen therapy, including a number of possible complications and side effects, such as:

  • Dry or bloody nose

  • Skin irritation from the nasal cannula or face mask

  • Fatigue or morning headaches

Tell your doctor if these problems persist. Your doctor may be able to help relieve some or all of these issues.

If you start using home oxygen therapy, you should ask your home equipment provider to give you a complete list of safety steps you'll need to follow.

The Importance of Sticking with Your Therapy

Remember to use oxygen therapy as prescribed by your doctor. While some people may feel embarrassed by having to use oxygen therapy in public, remember that it’s an important medical therapy. Low blood oxygen levels can lead to additional health problems. Your need to use oxygen therapy shouldn’t prevent you from taking part in social activities.

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Lung transplantation is an option for certain people with idiopathic pulmonary fibrosis (IPF). It is one form of treatment currently available for IPF, but not everyone is eligible, and finding a donor lung isn’t guaranteed. Lung transplants have been shown to improve both life expectancy and quality of life in people with IPF, but there are serious risks involved.

In order to qualify for a lung transplant, you must meet certain criteria. For one, you must have no other significant health problems, such as cancer; heart, liver, or kidney disease; or chronic incurable infections. This can be a challenge in people with IPF, as many suffer from other lung conditions, coronary artery disease, or other problems that make them ineligible to receive a transplant. Your doctor will be able to tell you if you are eligible for a transplant based on your overall health status.

In the past, individuals over the age of 65 rarely received transplants. However, because surgical techniques and results have improved, more centers are performing transplants in older patients.

Risks of Lung Transplantation

Lung transplantation is a highly risky procedure and there is no guarantee that it will be successful. Risks include:

  • Illness or fatality from the surgical procedure itself
  • Infection or cancer brought on by long-term use of medicines that suppress the immune system
  • Rejection of the donor lung

Only your doctor can say whether or not you are a possible candidate for a lung transplant. Medical guidelines recommend that the option of lung transplant be brought up at the time IPF is diagnosed if the patient meets all the criteria for transplant. Before pursuing the option of a lung transplant, you should discuss all the potential risks and benefits with your doctor.

Waiting is Now Reduced for Eligible Patients

The new lung allocation system (LAS) used by the United Network for Organ Sharing (UNOS, www.unos.org) has set new standards for how they evaluate transplant candidates. LAS is now based on the severity of lung disease. As a result, wait times have been reduced considerably for patients with severe lung function issues, including people with IPF.

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