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Respiratory Disorders (Expert Forum)
Double Pnomonia and Unknown Chronic Fibrosis of unknown source, no diagnosis rar
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Double Pnomonia and Unknown Chronic Fibrosis of unknown source, no diagnosis rar
by thevincentgirl, Sep 21, 2005 12:00AM
Please help me, my doctors dont know what my diagnosis is. I was hospitalized 9-3/9-12-05 and almost died several times. I am 37, have never had any pulmonary problems before, however, walked into the er, had cat scan, diagnosis at that point was double pnomonia, i was put on normal meds but illness detiorated and did not respond. Cat Scan and X rays were full blown pnomonia type symptoms, however,pulmonologist seem to have thougth i was exposed to something causing some type of a reaction within the lungs.I was finally put on what they said was "the big guns" (steroids-had steroid psychosis and was almost put on life support bc of this). Improvement began, although i was so weak all my strength went into breathing when i could. Finally when i was strong enough i had a bronchoscopy, the biopsy came back with chronic inflamation, still unknown diagnosis.Docs say there may be long term effects of fibrosis (scarring) still unknown.I am home and on 2.5-3.0 L oxygen and on breathing therapies, I am still very weak. My right shoulder hurts as well as ribs, the experts also said i have had this "condition" for a long time, however, I was not aware of it (is that possible to be so close to death and not know?)Prior two months i was treated for UTI's, which were not cured and antibitoics (cipro and supra)were utilized. In between antibitotic therapies i had extreme lower back pain, and consistent reported fevers all reported to my doc. I still have night sweats and am scared to sleep.If any other doc has heard of similiar case please help me. when d/ch dr said not pnom. yet UNK
Doctor's Answer
by National Jewish, Oct 02, 2005 12:00AM
, Oct 02, 2005 12:00AM
Since you are still having night sweats, this suggests that your pulmonary problem remains active. Despite the lung biopsy by bronchoscopy your pulmonary problem remains unknown. It must be treated accurately and intensively now. To do that, a specific diagnosis must be made.
Pneumonia is inflammation of the lung. This is most commonly due to an infection. The infectious pneumonias can be caused by any of hundreds of bacteria, viruses, parasites and fungi. Pneumonitis is a term that is often used interchangeably with pneumonia, but usually implies a non-infectious cause. The non-infectious pneumonias are generally autoimmune or allergic. This can be due to an antibiotic called Macrodantin® (nitrofurantoin macrocrystals) that is used to treat urinary tract infections (UTIs). Often the cause is unknown. Hypersensitivity pneumonitis (HP) and bronchiolitis obliterans with organizing pneumonia (BOOP) are 2 major types of non-infectious pneumonias.
HP is inflammation of the air sacs of the lungs. This is caused by an allergic reaction to inhaled biologic dusts that are small, 5 microns or less in diameter. Biologic dusts include animal or plant proteins, microorganisms, and rarely low-weight chemicals such as isocyanates in automobile paint.
BOOP is a lung disease where scar tissue forms in the small airways and almost always the air sacs that are in the area. Cigarette smoking does not cause this lung disease. It may be due to an infection such as a flu-like illness or pneumonia. Most of the time it is not possible to determine exactly what has damaged the lungs. Mucus lingers in these small airways and the air sacs. As it clears it leaves behind scar tissue. The symptoms may be an ongoing dry cough and shortness of breath. The chest x-ray is usually abnormal. Steroids are the most commonly used medicine to prevent the inflammation from becoming fibrosis. Since you experienced steroid psychosis your doctors will need to be certain of your diagnosis so that you can be treated accurately.
A lung biopsy is done to be certain of the diagnosis. If you are still ill, especially if your chest x-ray still shows signs of pneumonia, you will probably need a video-assisted thoracoscopic (VATS) lung biopsy. This is a surgical procedure in which the lung and surrounding tissues are examined through a scope with a small video camera at one end of a flexible tube. This scope is placed through a small incision between the ribs into the chest. During this procedure tiny pieces of lung tissue can be taken for further testing. If your doctors prefer to wait longer and not proceed in this fashion, you should seek a second opinion from a pulmonary specialist in interstitial lung disease at the nearest university medical center.
Interstitial lung disease (ILD) is swelling or inflammation that leads to scarring or fibrosis of the lungs in the area between the air sacs and the blood vessels. It may be due to toxic fume exposure, lung infection, connective tissue or autoimmune disease such as arthritis. Most of the time it is not possible to determine exactly what has damaged the lungs. The most common symptoms are an ongoing dry cough and shortness of breath, especially with exercise. Please read our Interstitial Lung Disease MedFact at http://www.nationaljewish.org/disease-info/diseases/rheum/ild/index.aspx for further information.
Pneumonia is inflammation of the lung. This is most commonly due to an infection. The infectious pneumonias can be caused by any of hundreds of bacteria, viruses, parasites and fungi. Pneumonitis is a term that is often used interchangeably with pneumonia, but usually implies a non-infectious cause. The non-infectious pneumonias are generally autoimmune or allergic. This can be due to an antibiotic called Macrodantin® (nitrofurantoin macrocrystals) that is used to treat urinary tract infections (UTIs). Often the cause is unknown. Hypersensitivity pneumonitis (HP) and bronchiolitis obliterans with organizing pneumonia (BOOP) are 2 major types of non-infectious pneumonias.
HP is inflammation of the air sacs of the lungs. This is caused by an allergic reaction to inhaled biologic dusts that are small, 5 microns or less in diameter. Biologic dusts include animal or plant proteins, microorganisms, and rarely low-weight chemicals such as isocyanates in automobile paint.
BOOP is a lung disease where scar tissue forms in the small airways and almost always the air sacs that are in the area. Cigarette smoking does not cause this lung disease. It may be due to an infection such as a flu-like illness or pneumonia. Most of the time it is not possible to determine exactly what has damaged the lungs. Mucus lingers in these small airways and the air sacs. As it clears it leaves behind scar tissue. The symptoms may be an ongoing dry cough and shortness of breath. The chest x-ray is usually abnormal. Steroids are the most commonly used medicine to prevent the inflammation from becoming fibrosis. Since you experienced steroid psychosis your doctors will need to be certain of your diagnosis so that you can be treated accurately.
A lung biopsy is done to be certain of the diagnosis. If you are still ill, especially if your chest x-ray still shows signs of pneumonia, you will probably need a video-assisted thoracoscopic (VATS) lung biopsy. This is a surgical procedure in which the lung and surrounding tissues are examined through a scope with a small video camera at one end of a flexible tube. This scope is placed through a small incision between the ribs into the chest. During this procedure tiny pieces of lung tissue can be taken for further testing. If your doctors prefer to wait longer and not proceed in this fashion, you should seek a second opinion from a pulmonary specialist in interstitial lung disease at the nearest university medical center.
Interstitial lung disease (ILD) is swelling or inflammation that leads to scarring or fibrosis of the lungs in the area between the air sacs and the blood vessels. It may be due to toxic fume exposure, lung infection, connective tissue or autoimmune disease such as arthritis. Most of the time it is not possible to determine exactly what has damaged the lungs. The most common symptoms are an ongoing dry cough and shortness of breath, especially with exercise. Please read our Interstitial Lung Disease MedFact at http://www.nationaljewish.org/disease-info/diseases/rheum/ild/index.aspx for further information.
Member Comments (3)
by CINDY4, Sep 28, 2005 12:00AM
Sorry to hear about this very scary experience. There are lung diseases known as "silent killers" because of the way you have no symptoms, and yet have horrible disease. It usually takes place over years, and it is frightening to know such serious diseases can lurk with out knowing it. The fibrosis you mention or pulmonary fibrosis, is a serious disease. These are interstitial lung diseases. You can look it up on google. There are many different kinds. steroids are effective in many cases, espeically if caused from inflammation which is what it sounds like your case is from the biopsy. These diseases are rare, and not many drs have expereince with them. My daughter has one of these interstitial lung diseases. I will tell you, it is best from the beginning to find a dr with expereince treating them. You may have to travel to get the care you need. We have gone all over the country, and have found there are many programs out there that help you pay for such evaluations. National Jewish in Denver is excellant, they are who answers this forum. We have gone there. The good news is at least now you know, and can try to put a stop to ongoing damage. Things usually do get better in time, and there are things like rehab that can help you get back to where you were, or close to it. My daughter's disease turned out to be something that was systemic and she has it in many organs. It has been a long road but we have learned alot along the way. Her