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.
The severity of IPF at the time of diagnosis and the speed of progression along with factors like age and overall health can impact the progression of the disease. From the time of diagnosis, most people with IPF live for
Because of this 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.
However, 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
If someone close to you is resistant to getting treated, here’s what you can do to possibly change their mind.
To make your case about the importance of IPF treatment, you need to know which treatments are available and how they might help.
Treatment for IPF can include:
- Anti-fibrotic drugs. Nintedanib (Ofev) and pirfenidone (Esbriet, Pirfenex, Pirespa) can prevent additional scarring in the lungs and slow the progression of the disease. They may also help prevent exacerbations, which is when the condition suddenly and unexpectedly gets worse.
- Anti-reflux drugs. Anti-reflux drugs like proton pump inhibitors can help prevent stomach acid from getting into your lungs, which can make IPF worse.
- Lung transplants. Lung transplants are recommended early in the disease progression. Getting a healthy lung from a donor could help your loved one live longer.
If a pulmonologist or rheumatologist determines that fibrosis may be due to a connective tissue disease or an autoimmune process, they may prescribe the immunosuppressant azathioprine (Imuran), mycophenolate mofetil (CellCept), or rituximab (Rituxan), or another anti-inflammatory specific medication.
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 can include:
- oxygen therapy, which may help improve the ability to perform physical exercise
- ventilator support, which may help with breathing
- cough medicines, which may relieve discomfort
- inhaled medications such as albuterol (ProAir HFA, Ventolin HFA, ProAir RespiClick), which can prevent the bronchial tubes from spasming
Pulmonary rehabilitation is a program that’s designed to help people with lung conditions like IPF breathe easier. This program can include:
- 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
To convince your loved one to 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, be sure to gather information. You can read about IPF on the internet and in books. You may also decide to talk with a pulmonologist — a doctor who specializes in treating lung diseases like IPF. It may help to come to the discussion with a list of talking points, including why treatment is important, and how it may help your loved one.
Think about meeting in a place where you won’t be distracted, for example, in your home or a quiet restaurant. Then, make sure to set aside enough time to have a real conversation. This may help you avoid feeling rushed when discussing something this important.
As you start the conversation, trying to see the situation from the other person’s point of view may help you communicate with empathy. It can feel frightening to live with a life threatening condition. They may also feel isolated.
Being gentle and sensitive in your approach may help your loved one see that you have their interest at heart. You may want to emphasize that you want to help without pushing your opinions. Many of the treatments for IPF can be cumbersome — like having to lug around an oxygen tank — or cause side effects — such as stomach upset. It’s important to respect your loved one’s concerns and hesitations about treatment.
You may want them to realize that even if they feel hopeless, there is hope for people with IPF. Each person with this condition is different. Some people can remain stable and relatively healthy for several years. People who are able to get a lung transplant may survive for many years. For people who experience progression of the disease, clinical trials are underway to test new therapies that could improve their symptoms, or potentially even provide a cure.
Once you’ve had the conversation, don’t stop there. It may help if you offer to be an active participant in your loved one’s care. Here are a few ways you might be able to help:
- 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 healthy meals.
Living with a serious chronic illness like IPF can be difficult. You may also be able to provide support by offering to lend a supportive ear to your loved one when they feel overwhelmed. This can 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 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.
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