Idiopathic pulmonary fibrosis (IPF) is a disease that causes scarring in the lungs. Eventually, the lungs can become so scarred that they can’t pull enough oxygen into the bloodstream. IPF is a serious condition that causes symptoms like a nagging cough and shortness of breath. Once diagnosed with IPF, most people live for only three to five years.
Because of the dire outlook, some people with this disease might not see the point in getting treated. They might worry that the side effects of treatment aren’t worth the limited extra time they might gain.
Yet treatments can help manage symptoms, improve quality of life, and possibly help people with IPF live longer. New therapies that are being studied in clinical trials might even offer a potential cure.
If someone close to you is resistant to getting treated, here’s what you can do to possibly change their mind.
IPF treatments: How they help
To make your case about the importance of IPF treatment, you need to know which treatments are available and how they help.
Doctors treat IPF with these drugs, alone or in combination:
- Prednisone (Deltasone, Rayos) is a steroid drug that brings down inflammation in the lungs.
- Azathioprine (Imuran) suppresses an overactive immune system.
- Cyclophosphamide (Cytoxan) is a chemotherapy drug that brings down swelling in the lungs.
- N-acetylcysteine (Acetadote) is an antioxidant that may prevent lung damage.
- Nintedanib (Ofev) and pirfenidone (Esbriet, Pirfenex, Pirespa) prevent additional scarring in the lungs.
Other medicines relieve IPF symptoms like coughing and shortness of breath, which can help your loved one feel better and get around more easily. These include:
- cough medicines
- antireflux drugs like proton pump inhibitors
- oxygen therapy
Pulmonary rehabilitation is a program that’s designed to help people with lung conditions like IPF breathe easier. This program includes:
- nutritional counseling
- exercise training
- education on how to manage IPF
- breathing techniques
- methods to conserve energy
- therapy to address the emotional effects of living with IPF
When lung function eventually deteriorates, a lung transplant is an option. Getting a healthy lung from a donor could help your loved one live longer.
Making the case for treatment
To convince your loved one that they should consider getting treated for IPF, you need to start a conversation. Set up a time for the two of you to talk. If you think other family members or friends can help you make your point, invite them along.
Before you meet, gather information. Read about IPF on the internet and in books. Talk to a pulmonologist — a doctor who specializes in treating lung diseases like IPF. Come to the discussion with a list of talking points — including why treatment is important, and how it can help your loved one.
Meet in a place where you won’t be distracted — for example, in your home or a quiet restaurant. Set aside enough time to have a real conversation. You don’t want to feel rushed when discussing something this important.
As you start the conversation, try to see the situation from the other person’s point of view. Imagine how frightening it may be to live with a life-threatening condition. Think about how isolated they may feel.
Be gentle and sensitive in your approach. Emphasize that you want to help, but don’t push your opinions. Keep in mind that many of the treatments for IPF can be cumbersome — like having to lug around an oxygen tank — or cause side effects — such as weight gain from prednisone. Respect your loved one’s concerns and hesitations about treatment.
If they feel hopeless, emphasize that there is hope. Everyone with this condition is different. Some people can remain stable and relatively healthy for many years. For those who experience progression of the disease, clinical trials are underway to test new therapies that could improve their symptoms, or ultimately even provide a cure.
Once you’ve had the conversation, don’t stop there. Offer to be an active participant in your loved one’s care. Here are a few things you can do for them:
- Drive them to and from doctor’s appointments, and take notes during the visits.
- Pick up prescriptions at the drug store.
- Remind them when they need to take medicine or when they have an upcoming doctor’s appointment.
- Exercise with them.
- Help them shop for groceries and cook healthier meals.
Living with a serious chronic illness like IPF can be difficult. Offer to lend a supportive ear to your loved one when they feel overwhelmed. Show them that you care, and that you’re willing to do whatever is necessary to help out.
If the person is still reluctant to get treated, see if they’re willing to meet with a counselor or therapist — a mental health professional who can talk through some of the issues with them. You can also take them to a support group. Meeting other people with IPF who’ve gone through treatment could help ease some of their concerns.