The official blog of the Lung Institute.
People living with pulmonary fibrosis, interstitial lung disease and other chronic lung diseases have often discussed their condition’s stages with their doctors. The traditional pulmonary fibrosis staging system uses a patient’s forced vital capacity (FVC) score from a pulmonary function test to determine a patient’s pulmonary fibrosis stage. Generally, a predicted FVC score of more than 75 percent is mild stage pulmonary fibrosis. A FVC score of 50 percent to 75 percent is moderate stage pulmonary fibrosis. Severe stage pulmonary fibrosis has an FVC score of 25 percent to 49 percent, and scores less than 25 percent are considered very severe. People in severe or very severe pulmonary fibrosis may also be considered in end stage pulmonary fibrosis. Here are the facts you need to know about end stage pulmonary fibrosis.
What are the end stage pulmonary fibrosis symptoms?
Pulmonary fibrosis affects everyone differently. Each person with pulmonary fibrosis has a unique, individual experience with the condition. Some people progress rapidly while others progress slowly. End stage pulmonary fibrosis is sometimes called the final stage of pulmonary fibrosis. While disease progression varies, there are some common end stage or final stage pulmonary fibrosis symptoms.
For example, some people have reduced lung function. Low blood oxygen levels caused by reduced lung function can make the body retain fluids. Typically, fluid retention occurs in the legs and abdominal areas. However, it can also happen in other areas of the body. Pulmonary fibrosis flare-ups can worsen symptoms and reduce blood oxygen levels more. After a flare-up, lung function doesn’t return to the level it was before, and breathing usually becomes more difficult.
End Stage Pulmonary Fibrosis Symptoms Include:
- Chest pain
- Poor appetite
- Increased anxiety
- Bothersome cough
- Becoming housebound
- Reduced lung function
- Disturbed sleep patterns
- Need for intensive home support
- Frequent flare-ups and hospitalizations
- Increased severity in shortness of breath
- Difficulty maintaining a healthy body weight
How can I manage end stage pulmonary fibrosis symptoms?
There isn’t a cure for pulmonary fibrosis. However, you can manage symptoms. Some people find it helpful to use a small handheld fan when they feel breathless. The feeling of air on your face may help it feel easier to breathe. Keep the handheld fan with you, so you can use it when you need it.
If you have low blood oxygen levels, your doctor may prescribe oxygen therapy. Oxygen is essential for a properly functioning body. Oxygen therapy helps your body maintain a better blood oxygen level. You and your doctor will work together to assess and monitor your oxygen therapy needs.
Many people find joining a pulmonary fibrosis support group helpful in coping with their condition. By participating in a support group, you can learn from other people who are going through similar challenges. Talk with your doctor about local support groups. You can also search for online pulmonary fibrosis support groups, such as PatientsLikeMe. Group members may share coping strategies, exchange information about treatments they have tried and listen to you as you express your feelings.
Some people prefer one-on-one counseling instead of a support group. A trained, licensed counselor could be a great addition to your medical team. A counselor can teach you coping strategies, relaxation techniques and other tools. Learning and using these types of techniques can help you relax when you feel increased breathlessness.
What are the end stage pulmonary fibrosis treatment options?
End stage pulmonary fibrosis treatment options are individualized depending on what the patient needs. If a patient feels anxious or has symptoms of depression, a doctor may prescribe medications to help ease symptoms and improve mood. Improvements in mood can often help with breathing and mobility.
Many people with end stage pulmonary fibrosis find it difficult to maintain a healthy weight. Your doctor may recommend eating certain foods and avoiding others. For example, cruciferous vegetables, such as broccoli, cabbage and cauliflower, may cause gas and bloating. Many people with chronic lung diseases avoid these types of foods. Your doctor may recommend trying nutritional drinks, like Boost or Ensure, to help you get the nutrients and calories you need.
Your doctor may prescribe a variety of medication and therapies. Common end stage pulmonary fibrosis treatments include inhalers, corticosteroids, immunosuppressive medications, anti-inflammatory medications, anti-fibrotic medications, oxygen therapy and lung transplantation surgery.
Some people have found alternative therapies helpful as well. Stem cell treatment for pulmonary fibrosis works to promote healing from within the lungs. Under the supervision of their doctors, some people have reduced their oxygen therapy use, increased their activity level and improved their overall quality of life after treatment. People in any stage of pulmonary fibrosis, including end stage pulmonary fibrosis, may benefit from stem cell treatment. If you or a loved one has pulmonary fibrosis, interstitial lung disease or another chronic lung disease and would like to learn more about stem cell treatment options, contact us at (800) 729-3065.