If you received a diagnosis of pulmonary fibrosis, it could seem overwhelming, especially if you are newly diagnosed. Pulmonary fibrosis is not something most people are familiar with. Having a lot of questions is normal.
Your doctor probably explained the basics, such as what pulmonary fibrosis involves and typical symptoms to expect. But there is a lot more to learn about the disease. Learning as much as you can about your condition helps you take an active role in your treatment. But where do you start? Below are some questions to ask your pulmonologist.
How will you monitor my disease progression?
It’s helpful to understand how your doctor will determine if your disease is stable. Your doctor should continue to monitor your condition throughout the years. One way of monitoring the progression of your disease is by measuring your lung function through pulmonary function tests. Your doctor may also order exercise testing, such as a six-minute walk. Imaging scans including a high-resolution CT scan may also be performed. The frequency of testing may vary.
What is pulmonary rehab and how can it help?
If your doctor has not discussed pulmonary rehabilitation classes, you should ask if it’s recommended in your situation. Pulmonary rehab teaches patients with PF and other lung diseases how to manage their condition. Participants receive education on medication, nutrition and breathing techniques. Information on decreasing shortness of breath and how to avoid infections is also provided. A monitored exercise program is also part of a pulmonary rehab program.
What treatment is available?
It’s vital to understand what your treatment options include. Currently, there is no cure to reverse scarred lung tissue in people with pulmonary fibrosis. But treatment is available that may slow progression and improve symptoms. Treatment is not a one size fits all approach. Everyone is different and what works for one person may not be effective for another. Understanding your options helps you make an informed decision about what is best for you.
Does my medication cause side effects?
If your doctor has prescribed medication to treat your pulmonary fibrosis symptoms, ask about side effects. Although not everyone will experience side effects, it’s helpful to know what to expect.
How can I maintain my quality of life with PF?
Talk to your doctor about lifestyle changes you should make to improve or maintain your quality of life. For example, quitting smoking is a must if you have PF.
When thinking about questions to ask your doctor, there are a few additional considerations including the following:
- One of your first questions may involve your prognosis. It’s a difficult question to answer. Keep in mind several factors affect prognosis including age, lifestyle choices and overall health.
- It may be helpful to write your questions down in advance, so you do not forget anything.
- When you ask your doctor questions, take notes if needed. You may be getting a lot of information, and it’s easy to forget what was said. Jot down the answers, so you have something to refer back to at a later date.
- Ask for clarification if you don’t understand something. Hopefully, your doctor answers your questions without a lot of medical jargon. But if there is something you don’t understand, ask for clarification.