Double Pnomonia and Unknown Chronic Fibrosis of unknown source, no diagnosis rar

[thevincentgirl]

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

[thevincentgirl]

Thanks so much for your information.  I received more information from that post than I have since Sept 3 when this all began.  I do have a few more questions, I had a extremely painful feeling that began between my chest bone and worked its way up.  It hurt so bad I couldn't even cry, I called my doc, they said go to the ER.  the ER ran more tests, however, the test say that 95% of the bronchi(?) show improvement.  One of the test done was in regard to the oxygen treatment, in my original respiratory test the oxygen was removed for about 20 minutes and I walked without the oxygen (with the finger machine on) until the level became to low and I am supposing that is how they diagnosed the liters I would need at home.  Well, when my second visit to the ER (Thurs), I arrived with my portable oxygen and received the hospital oxygen (received oxygen the entire time), the test was done by walking 10-20 feet, without the removal of any oxygen except for the brief walk.  My Pulmonary doctor read these results and said he doesn't think I need oxygen at home anymore.  However, I still need it to help me even talk ( I get out of breath talking) or do any activity(steps, walking a distance, driving, shopping siting in a buggy even, not to mention i dont have the strength to even cook or clean like I used to)type of activity.  Also, I am wondering once you are diagnosed with ILD does it "disappear"?  BC I still have horrible back pains and breathing problems.  However, he told me the cat scan and x ray  came back showing 95% improvement compared to the original cat scan .Remember, they oriignaly thougth i had double pnomonia.   I have since been off the steroids since Thursday, but am worried that the inflammation may reappear, how will I know if it does? What are the symptoms?  I am still weak its been 7 weeks now and I am only "maybe" 5% back to my normal self.  Does this disease go away or disappear as my doc is referring to? Also, since this has all began I have awful back aches 24 hours a day, is this common?  I am not coughing to that extent to cause something ike this.  What would you recommend?  thanks so very much for your comments and suggestions.

[National Jewish]

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

[CINDY4]

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 lungs are actually where it first showed up, and now they are better than she has been in years. We are dealing with probelms with other organs, but by keeping a close watch you can catch things as they come up. I definitely think knowing is better than not knowing. Hope you see better days soon. Take care.

Cindy