The Realities of a Pulmonary Fibrosis Diagnosis

There is no single test that will deliver a positive (or negative) pulmonary fibrosis (PF) diagnosis. Patients who present symptoms that doctors believe could be PF — shortness of breath, fatigue, chest pain, and a persistent cough — will have to undergo a series of tests to establish what the problem is.

MORE: Seven common symptoms of pulmonary fibrosis

The difficulty in diagnosing pulmonary fibrosis is that the initial symptoms can mimic many other diseases — both mild and chronic. A pulmonologist will perform various tests including a physical exam, chest X-rays, a six-minute walk test to see how far you can walk in six minutes, a spirometry test to measure the amount of air you can exhale from your lungs, and a blood gas test to measure the amount of oxygen and carbon dioxide in your blood. In addition to these tests, a lung biopsy may be needed to establish whether fibrosis has occurred in the lungs.

If you are diagnosed with pulmonary fibrosis, the doctor will establish what stage the disease is at and you can then decide on appropriate treatment.

A pulmonary fibrosis diagnosis is difficult for patients to deal with. They will understandably go through a variety of emotions as they try to come to terms with the life-changing news. As our resident columnist Kim Fredrickson writes, they will have to face some tough realities.

Along with their own emotions, PF patients often have to deal with their loved ones’ reactions. Often well-meaning loved ones can be in denial about the seriousness of the disease, failing to address important issues and expecting that treatment will cure the disease and everything will be all right again. Some friends and family may even distance themselves from the patient, unable to come to terms with the diagnosis.

As there is no right way for a patient to deal with such a difficult diagnosis, there is no cast-in-stone way for our loved ones to deal with it either. Patience and time usually work wonders, along with a frank and honest discussion about what the diagnosis means.

MORE: Six pulmonary fibrosis complications

Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

3 comments

  1. Lea says:

    I really like reading all the articles from Pulmonary Fibrosis News, but I hope my ILD diagnosis turns out to be something else. I have had all the tests except for biopsy. I don’t want a biopsy at all. Biopsies cause scars. A biopsy can miss the intended area by a tiny distance, and then the doc has inconclusive results.

    So, I wait.

    • Lea, you sound like you are on the right path. Stay informed, discuss results with your doctors. My Pulmonologist and I decided to go ahead with the lung biopsy a few months ago. Recovery was painful for a few days and annoying for a couple of months. Now I have I also have tissue samples for a second opinion and that is what I am doing now. I do have three 1-inch scars under my right arm and back, but I don’t worry about that, I think of my wife with two of our children still in Jr. High. Stay strong and fit. Look for a Pulmonary Foundation support group in your area or start one.

  2. Gary Ford says:

    Ummm…Lea if you are worried about scars and it is IPF…you are going to have to make a huge decision…living with a huge scar that goes from the left to the right arm pit, with 5 bullets type scars from chest tubes or die. Sorry but it is the truth!…I had IPF for almost 4 years, received a double lung transplant 14 Apr ’17 and yes, I won’t win any bathing suit contests but at least I am still breathing and enjoyed watching my son getting married in August…I would recommend the biopsy to confirm the diagnosis as you can be delaying such important medications as Esbriet and/or OFEV which put IPF into remission…hence why I went for 4 years, and I know of others that have gone even longer…and I thought only men were in denial!..warmest regards and best wishes.

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