You’ve received an idiopathic pulmonary fibrosis (IPF) diagnosis. It’s an uncommon lung disease, and you may not know much about it. But you can change that.
To get a helpful and informative conversation going with your doctor, start with the following questions:
What is IPF?
You’ll want more than a textbook answer. Ask your doctor how IPF is affecting your breathing and your lungs’ ability to move oxygen into your bloodstream. You should understand your version of IPF. This is important, because everyone who has IPF has a unique experience with the disease.
How serious is my condition now?
You may have had IPF for a long time and not known it. Or you may have gotten a diagnosis soon after it developed. In either case, you should get an idea of what stage your IPF is at now and how fast it seems to be progressing.
How often will I need to come back for appointments or testing?
This will depend on your condition. Someone with a serious case being treated with multiple medications will need more regular monitoring than someone with a new case or mild IPF.
What is the likely course of my disease?
Even the best doctors can’t provide a detailed timetable and forecast for your disease. But if you’re seeing a physician with some experience treating IPF, you should be able to get a good idea of how IPF progresses. You’ll want to learn what your long-term prospects are and whether oxygen therapy is inevitable. As well, ask how likely IPF is to affect your overall health, your independence, and your ability to get around.
What changes can I make in my life to help improve symptoms?
If you smoke, the first thing your doctor will say is to quit as soon as you can. But how? Don’t let previous unsuccessful attempts to quit keep you from trying again. You may need a nicotine replacement product or other therapy. You should also find out what you can do when it comes to diet and exercise. Becoming healthier overall will improve your lung health, too.
What are my treatment options?
Medications that control inflammation and may help reduce lung tissue scarring are often the first treatments. Oxygen therapy may also be needed. If your condition gets too serious, you may need a lung transplant. Discuss the risks and benefits of medications.
Am I a good candidate for pulmonary rehabilitation?
Pulmonary rehabilitation is a multi-week program that teaches you about your condition and how to exercise safely. You’ll also learn breathing techniques to help ease the burden on your lungs. Pulmonary rehab is meant for people with IPF and other lung problems, such as lung cancer or chronic pulmonary obstructive disease (COPD). Rehab can be especially helpful in improving your quality of life with IPF.
What support is available?
Ask your doctor about support groups in your community. Pulmonary rehab sometimes includes support group sessions, but ask if your hospital or another organization in town sponsors programs for people with IPF. Groups such as the Pulmonary Fibrosis Foundation and the American Lung Association may have support groups or educational programs in your area.
Am I eligible for a clinical trial?
The National Institutes of Health oversees clinical trials of new medications and other treatments, including stem cell therapy. There are strict requirements for participation in a trial. Your age, gender, other health conditions, medical history, and other factors will determine whether you’re a candidate for a particular trial. You may also need to live near a hospital participating in the trial, though in many cases, participants are flown at the researcher’s expense to a hospital for treatment. Your doctor may not know about appropriate trials for you, but may be able to help you find out more information.
Tips for making the most of your doctor visits
To make the most of your doctor visits, consider the following tips:
- Write down questions ahead of your doctor’s appointment so you don’t forget them. Put the most urgent questions at the top in case you run out of time.
- Take notes during your appointment so you’ll remember what your doctor tells you.
- Bring someone to the appointment to help you remember questions and answers. A friend or relative may also be able to tell your doctor about new symptoms or changes in your condition that you may not have noticed.