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Pulmonary Fibrosis

Pulmonary Fibrosis



hi my gran has idiopathic ulmonary fibrosis and other health problems she is currently on 15lts oxygen 24/7 when speaking she has to use a further 12 she is immobile and the last couple of days she has had really swollen feet and difficulty breathing her lips are dark blue and her eyes are sunken what can i do to help her she has nurses coming to see her regular although she doesnt want to know about her illness and whats going on i feel in the dark about whats going on and cant ask the nurses about life expectancy as i feel i will be going against her wishes but i have a family and need to make arrangements so that i can be with her when she needs me and this is really upsetting me and need to know what i need to do thank you


Idiopathic pulmonary fibrosis is a progressive and eventually fatal disease. As it gets worse, patients require more and more oxygen. When patients are not getting enough oxygen, they become cyanotic (lips and fingers become blue) and they have swelling in the legs. Your grandmother is on the highest amount of oxygen that can be delivered at home. If the diagnosis of idiopathic pulmonary fibrosis is confident, then her symptoms suggest that she has a very advanced stage. 

Assuming that there are not other causes of her symptoms (for example, heart failure, pulmonary embolism[blood clots], or pneumonia), then use of hospice may be helpful to keep her as comfortable as possible in her last days. Hospice can supply medications (such as morphine) that can relieve the sense of shortness of breath that can develop when patients have a low blood oxygen level that cannot be corrected with supplemental oxygen alone. It would also be important to be sure that she has a living will to instruct the family on what to do when she develops respiratory failure and/or unconsciousness - patients with end-stage idiopathic pulmonary fibrosis rarely get any benefit from mechanical ventilation so a living will can be a useful way to insure that she is not placed on life support when her lungs eventually give out.

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Response by:

James N Allen, Jr, MD James N Allen, Jr, MD
Clinical Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University