Pulmonary Fibrosis: 14 Questions to Ask Your Doctor after a Diagnosis

If you’ve recently been diagnosed with pulmonary fibrosis — a condition that leads to damaged, scarred lungs and difficulty breathing — you might feel overwhelmed and wonder what your next steps should be. Having a list of some of the best questions to ask your doctor after a pulmonary fibrosis diagnosis can help you manage your condition and receive the best care.

How Advanced is My Condition?

Once you’ve been diagnosed with pulmonary fibrosis, it’s important to find out how advanced your condition is. Doing so helps you and your doctor discuss a treatment plan that you’re comfortable with. The best individualized treatment plan for you is one that helps ease symptoms, improves quality of life, and extends your life expectancy as much as possible.

Some people find out they’re diagnosed with pulmonary fibrosis immediately after symptoms appear, while others wait until their condition is more advanced before seeking medical treatment. Knowing how advanced your case is helps you figure out how to properly care for yourself, how to cope emotionally, and how to make arrangements for both the treatments and appointments you’ll need down the road.

How Often Should I Schedule Clinic Appointments?

After you’ve been diagnosed with pulmonary fibrosis, receiving top-notch ongoing medical care is crucial. Find out from your doctor how often you should schedule appointments, and learn about signs and symptoms that indicate your doctor should see you for health-related concerns. For example, ask your doctor to rank symptoms in terms of which ones warrant a phone call, clinic appointment, or emergency room visit.

Find a doctor you’re comfortable with, as ongoing routine care is an important part of properly managing pulmonary fibrosis.

When Should I Begin Therapy or Switch Treatment Plans?

When you have pulmonary fibrosis, your doctor will likely recommend medications or therapies to help you manage the disease and reduce side effects associated with it. To manage pulmonary fibrosis as well as possible and increase your life expectancy, find out from your doctor when you should begin therapy or medications and which treatment plan to follow. Also ask about signs and symptoms to watch for that may indicate it’s time to change up therapy strategies or treatments.

You may want to consider trying systemic enzyme therapy as a complement to the treatment plan prescribed by your doctor. Some people living with pulmonary fibrosis find that taking systemic enzyme supplements supports their lung health and helps them live a more active life. Look for a blended supplement that contains enteric-coated serrapeptase and nattokinase, and one that features BPPS™ technology.

Which Medications Should I Take?

Your doctor can give you some ideas about medications that can help ease symptoms and manage pulmonary fibrosis. According to the Mayo Clinic, new medications such as nintedanib (Ofev) and pirfenidone (Esbriet) may help slow the progression of pulmonary fibrosis and are approved by the U.S. Food and Drug Administration (FDA). New formulations of these medications and additional medicines are being developed but are not yet FDA approved.

It’s important to discuss pros and cons of taking certain medications with your doctor to make sure the treatment option you pick is the best match for your condition. Ask your doctor about side effects —  rash, nausea, diarrhea — that may occur when taking certain medications and whether the potential benefits outweigh the risks.

According to the National Heart, Lung and Blood Institute, 9 out of 10 people who suffer from pulmonary fibrosis also have gastrointestinal reflux disease (GERD), so check in with your doctor to see if taking anti-acid medications to help treat GERD is a good option for you.

Am I a Candidate for a Lung Transplant?

Because of the general prognosis for pulmonary fibrosis — there’s no cure, the condition can’t be reversed, and it often worsens over time — some pulmonary fibrosis patients are good candidates for lung transplants. If this is the case for you, a lung transplant can drastically improve your quality of life and increase your life expectancy. Your doctor may recommend a lung transplant if your condition is very severe or worsening rapidly.

However, lung transplantation comes with risks as well. There’s a possibility of complications associated with lung transplant surgery, such as infection and organ rejection. To lower the chance that your body will reject a new lung, you’ll likely have to take medications for the remainder of your life.

To maximize your chance of being a candidate for a lung transplant, adopt healthy lifestyle habits to reduce your risk of developing additional chronic health conditions. The National Heart, Lung and Blood Institute says if even you’re older than age 65 but have no other serious health problems, some medical centers will consider you as a lung transplant candidate.

Talk with your doctor about becoming a lung transplant recipient as soon as possible. You’ll likely have to be put on a waiting list, as the supply of lung donors is limited.

Which Workouts are Safe for Me?

Regular exercise can be difficult for people with pulmonary fibrosis, as shortness of breath is a concern. However, when done properly, exercise  can improve your symptoms, boost overall energy levels, increase strength, and boost quality of life in patients with pulmonary fibrosis.

Ask your doctor to help you get started with a new exercise program and determine whether doing so is safe for your condition. Ask about ideas for cardiovascular, strength, balance, flexibility, and breathing exercises to get you headed in the right direction. Be sure to find out if there are any exercise restrictions your doctor has for you, such as avoiding high-intensity workouts.

Which Rehabilitation Programs Do You Recommend?

Find out from your doctor if her office or a local hospital nearby offers rehabilitation programs for patients with pulmonary fibrosis. These programs are considered standard treatment for people with lung diseases and help improve quality of life and well-being in patients suffering from breathing problems.

During rehabilitation, you’ll likely be treated by a team of specialists and learn about how to manage your condition to maximize health, well-being, and life expectancy. Ask your doctor to refer you to a rehab program and to point you toward more information about what you’ll be doing during each session.

Many pulmonary fibrosis rehab programs include exercise training, nutrition counseling, lung disease education, breathing technique training, and counseling or group support to manage the disease.

Which Smoking Cessation Programs Do You Recommend?

Smoking can accelerate the progression of pulmonary fibrosis and loss of lung function associated with it, which significantly lowers life expectancy in smokers. That’s why avoiding tobacco if you have pulmonary fibrosis is crucial.

However, smoking cessation is easier said than done for many smokers. Ask your doctor about referrals for smoking cessation programs offered in your area to help you kick smoking to the curb for good.

Am I a Candidate for Oxygen Therapy?

Your doctor may recommend oxygen therapy to improve your quality of life and make breathing easier for you. If you have pulmonary fibrosis, find out from your doctor if you’re a good candidate for this type of therapy.

Oxygen therapy helps boost low blood oxygen levels, lowers blood pressure in the right side of your heart, aids in better sleep, makes exercise easier, and reduces your risk for developing additional health complications. Find out from your doctor when you should utilize oxygen therapy and how often to do so. He or she may recommend supplemental oxygen during exercise, sleep, or all day long, depending on how severe your condition is.

Do I have Symptoms of Depression?

People with chronic health conditions often have higher rates of depression, says the National Institutes of Mental Health. This might be due to living in chronic pain, not being able to physically do things you used to do, or knowing your life expectancy may be shorter.

Talk with your doctor about any symptoms of depression you may be experiencing — such as feeling sad often, feeling tired, feeling irritable or anxious, feeling worthless or guilty, loss of interest in once pleasurable activities, a low sex drive, trouble concentrating, sleep disturbances, unplanned weight gain or weight loss, changes in appetite, chronic aches and pains, thoughts of suicide, or suicide attempts.

Depression is a serious health condition, so if you’re experiencing symptoms of it check in with your doctor about the best treatment options for you. He or she may prescribe anti-depressant medications for you, refer you to a counseling program for support, or talk with you about electroconvulsive therapy (ECT) and transcranial magnetic stimulation (TMS) — which are new, non-invasive depression treatment options.

Natural treatment remedies you might also consider include regular exercise (especially low-impact walking and biking), achieving or maintaining a healthy weight, and relaxation techniques to reduce stress.

What is My Life Expectancy?

It’s important to discuss with your doctor your anticipated life expectancy when you have pulmonary fibrosis — and how that number may change with and without certain treatment options. For example, the National Heart, Lung and Blood Institute says many patients with pulmonary fibrosis live just 3 to 5 years after being diagnosed with the condition.

However, potential new medications and lung transplants may increase the number of years you’ll live with the disease, so it’s important to discuss all forms of treatment with your doctor to come up with a plan you’re comfortable with. While there’s no way to know for sure how long you’ll live with pulmonary fibrosis, coming up with a game plan based on your doctor’s prediction is beneficial to help with life planning.

Should I Sign up for a Research Study?

Pros and cons exist when signing up for clinical research trials, which is why it’s important to chat with your doctor to find out if you’re a good candidate. He or she may have heard about studies becoming available in your area to test new pulmonary fibrosis treatment plans or medications.

While some new medicines being studied aren’t yet approved by the FDA for use, there’s a possibility a new treatment could work for you. And there’s no cost involved in taking clinical research medications, even if they prove to be effective.

Since there are so many unknowns involved in taking new research medicines, some patients aren’t comfortable participating in studies. Possible side effects could make pulmonary fibrosis symptoms worse. Have a conversation with your doctor to see if it’s beneficial for you to take the risk and sign up for a research trial in your area before making the decision to do so.

How Can I Cope and Receive Social Support?

Being diagnosed with pulmonary fibrosis can be an overwhelming and emotional experience. Because the disease often gets worse over time, learning more about it can help you cope with your new diagnosis. Pulmonary rehabilitation programs can provide a social support network for you, but ask your doctor about other programs that help patients cope with feeling of stress, fear, or depression.

Your doctor might refer you to a support group of other people diagnosed with pulmonary fibrosis, which is a way to relate and talk about feelings with others who can understand what you’re going through.

Will I Require Hospice Care?

If your disease progresses rapidly or is severe, ask your doctor about end-of-life concerns and planning advance directives. This will help you, your family, and your medical care team know what your last wishes are and when to resuscitate you in an end-of-life situation — as well as when not to.

If your disease is progressing and you’re not a candidate for a lung transplant, talk with your doctor to determine if you qualify for hospice (a.k.a. end-of-life) care and what the plan of action will be if you’re no longer able to care for yourself. While these conversations are difficult to have, they’re a necessary part of ensuring you’re cared for properly in the long term.

Living with Pulmonary Fibrosis

Being diagnosed with pulmonary fibrosis doesn’t mean your life is immediately ending — or that you have to suffer. Asking the right questions to stay educated about the disease and new medical advances can give you the best chance of living a healthy, fulfilling life with pulmonary fibrosis. Be sure to find a doctor you’re comfortable enough with to ask questions, one that takes the time to listen to your concerns and who has experience treating other patients in your situation.