Discussions By Condition: Repiratory conditions

Need help: mom/what kind of lung diseas?

Posted In: Repiratory conditions 5 Replies
  • Posted By: doepken
  • November 10, 2006
  • 01:22 AM

My mother has been sick since April 2006 - it was first pnemonia (sp) and since she wasnt' getting better she went to a horribly lung doctor who didnt' explain what was going on and just gave her medication...she is now sick again and we just got back from another lung doctor who was great because he explained everything. She received a cat scan - and it shows some type of scarring on both lungs on the bottom. She is getting a biopsy done tomorrow - but I am extremely worried....could this be fibrosis? She has been tested for TB and that has been rules out. What else could she have if not fibrosis? The doctor put her on oxygen because when she walked she had 86% oxygen and when she sat she had 91%.

Any advice will be appreciated - I am so worried. The doctors before this new one has been sending her away saying it was pnemonia when it never was ..... and this is the first time a lung doc wanted to do a biopsy.

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5 Replies:

  • Hi my daughter was very poorly 6 years ago and what they thought was asthma turned out to be a condition called Bronchiectasis. Hope this helps.
    DONDON 2 Replies
    • November 10, 2006
    • 01:04 PM
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  • Yes, scaring sounds like pulmonary fibrosis caused by an Interstitial Lung disease ILD. Check out a on-line support group called Huff N Puff. There areboth people with pulmonary fibrosis and loved ones of those with PF. They are a wonderful group of people and know more about PF than most MD's because they live with it. Your Mom is lucky she has you. Make sure you take care of yourself also.http://www.huff-n-puff.net/newforum/index.php?sid=4473111f7f6798d63aecf6845bf2efb6
    Anonymous 42789 Replies
    • November 12, 2006
    • 08:55 AM
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  • Hi There is another rare disease called Sarcoidosis. This causes scarring of the lungs. I had this myself, a long time ago. Just had a skin biopsy, due to skin lesions. Dermatologist, said it looks like Sarcoidosis. I am waiting for the results. This disease can wax and wane for years, and can appear in any organ of the body, but mainly the lungs. Good luck.
    Anonymous 42789 Replies
    • November 18, 2006
    • 11:42 AM
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  • There are ~ 150 different lung diseases that fall into the group interstitial lung disease ILD, more commonly called for short pulm fibrosis. Sarcoidosis falls in this class. As with the other ILDs diagnosis is quite difficult. A positive biopsy of a skin lesion if it exists, is valuable for sarcoidosis of the lung. I've seen rheumatologists diagnose sarcoidosis on the basis of just one of sarcoidosis findings which are found in other ILDs. This is unfortunate for the patient has not really gotten a good diagnosis from a so-called expert. I've seen other ILDs totally misdiagnosed, even by top hospitals or the nation's best hospital. A misdiagnosis, hence erroneous treatment can kill. For example, if diagnosed with idiopathic pulmonary fibrosis and treated with interferon gamma, if one has instead sarcoidosis, that disease will be greatly exacerbated (made worse). Most ILDs result in irreversible scarring, hence permanent loss of functional lung tissue. Since ILDs are very serious diseases, many resulting in death in 3-5 yrs, it is imperative to get second and third opinions from ILD experts, found at only some medical schools. Unfortunately many many family docs have never heard of an ILD, have never had experience with ILD, and continue to misinform their patients, for example, that their shortness of breath is due to patient hysteria. This may be after repeated findings by the radiologists who read chest X-Rays of ILD. Reports of such to the patient's family doc are not taken seriously. The usual screening lung tests do not pick up ILDs. A high resolution CAT scan can. It's not uncomon to see patients being treated for COPD, when they do not have COPD. It was not till a family member died that it was discovered that his "COPD" was really pulmonary fibrosis. It's inconceivable that such sloppy diagnoses are so very common for killer diseases such as ILDs, the more rapidly progressive variety, and that never did the patient ever receive appropriate therapy. It's a sad state of affairs in the usual workings of the medical world.
    Anonymous 42789 Replies
    • January 12, 2007
    • 04:04 AM
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  • wjfs3gYour mom should have a sputum culture checked for nontuberculosis mycobacteria. It is a cousin to TB but not contagious. It is becoming quite common in women in their 50's plus. If she has this she needs to be on antibiotics long long term. I have this disease and was diagnosed in Nov. 2004 but truly believe I have had much much longer. She should also have a bronchoscopy.
    Anonymous 42789 Replies
    • January 27, 2007
    • 10:56 PM
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