Most long-term lung conditions gradually worsen with time. However, everyone with PF has a different experience with the condition. Some people progress slowly while others progress rapidly. Some common end stage pulmonary fibrosis symptoms include the following:
Increased severity of shortness of breath
There is a noticeable gradual worsening of breathing. This is due to a decrease in lung function which makes breathing more difficult.
Breathing may be improved by using inhalers, other medicines and occasionally nebulizers. Some patients find it helpful to use a hand-held fan when they feel breathless as the feeling of air on their face can make it feel easier to breathe.
Low blood oxygen levels as a result of reduced lung function make the body retain fluids, particularly in the legs and abdomen. However, it can happen in other areas of the body as well which can be uncomfortable.
This can be treated with tablets called diuretics which reduce the swelling. However, they will increase the frequency of trips to the toilet which may be a problem for you if you have difficulty moving about.
Increased depression and anxiety
This becomes common as symptoms worsen and you get more housebound and isolated. Loneliness is a common problem for people with limited mobility as a result of a worsening lung condition.
Joining local or online pulmonary fibrosis support groups may help in coping with these symptoms. By participating in these groups, you meet and hear from other people who are going through similar challenges which may provide you some comfort. People in the support groups also share their coping strategies and the treatments they have tried and encourage you to share your feelings and experiences.
You could also work with a trained, licensed counselor if you prefer one-on-one support. A counselor can teach you coping strategies and other techniques to help you feel less anxious when your symptoms increase. You could also learn meditation and breathing techniques to help you relax.
If you are suffering from severe depression or anxiety, a doctor may also prescribe medications to help ease symptoms and improve mood.
Poor appetite and difficulty maintaining a healthy body weight
Loss of appetite is a common problem as your pulmonary fibrosis progresses. Increase in breathlessness makes swallowing difficult and leads to weight loss.
Choosing softer moister foods may make swallowing easier. Eating small portions of high calorie foods throughout the day works well for some people. Your doctor may also recommend nutritional supplements such as Ensure or Boost to increase your caloric and nutrient intake.
This can be very bothersome and may be a result of reduced lung function and low oxygen levels. Coughing attacks may also lead to severe breathlessness which can be very distressing.
Sitting upright with the support of pillows may help during bouts of coughing. Your doctor can also prescribe certain medications that can help stop a cough. Coughing attacks may produce embarrassing incontinence which can be managed by reducing intake of alcohol and caffeine-containing drinks such as tea and coffee.
Fatigue and disturbed sleep
These symptoms are common as lung disease progresses. Fatigue may be due to a combination of poor sleep, insufficient food intake, depression and anxiety. Disturbed sleep may be caused by symptoms such as breathlessness, pain and coughing.
Your doctor may be able to determine the possible cause of these symptoms and help you with ways to manage them.
Frequent flare-ups and hospitalizations
As the lung function worsens, you may have increasingly frequent flare-ups. This may require you to be hospitalized to receive ventilation support to maintain sufficient oxygen levels in your body. Sometimes, with the right equipment and respiratory specialist support, you may be able to manage a flare-up at home.
However, after each flare-up, the lung function does not get back to the level it was before the flare-up.
This is not very common with lung diseases and can be treated with pain killers. For constant pain that is severe, a syringe pump is inserted under the skin that provides a constant dose of strong painkillers.