Dear Victor:

I hope you are still on this site, as I have just discovered about my Mother, the opposite of what you posted in 2008; My Mother has Idiopathic (unknown origin-I have concluded it is LUPUS) Pulmonary Fibrosis. She was hospitalized at the beginning of September, when she passed out, having an ordinary, in-office, Cardio, Stress-Test.

My Mother was sent to the Emergency Room and they determined she had been living with Sat levels (Oxygen levels) at 73 average. After testing every part of her heart, lungs, vascular system, etc. she was not given a diagnosis, but weas told she needed to be admitted. After Five days in the hospital, they still had no clue why her Oxygen is so low AND SHE WAS DETERIORATING FAST!

I am sorry nobody has answered your question, because I am now concerened about the same thing, but my Mother has a Pulmonary Disease and will be diagnosed with Lupus. I am now trying to figure out which is more worrysome, because the Lupus is causing the Fibrosis, but we know there is no treatment (except a medication in Europe) for IPA.

I will not mention the very small town she lives in, but I have not seen a competent, licensed professional since my Mother's illnesss. For instance, her PCP knew about her Dyspnea (shortness of breath) and low O2. In fact, he sent her to a Pulmonologist in January, 2011 for a PULMONARY STUDY and never again followed up. My Mother called and called his office to hear the findings, but they never answered, so she assumed everytghing was fine. When she was admitted, all of her records were incorrect; they claimed she had COPD, is a heavy Smoker (not smoked in 40 years), never showed signs of low Oxygen (January, before?)

I actually discharged her from the ONLY hospital within a two hour radius, because the care was horrible. I made a committment to take care of her and make certain she is on oxygen 24 hours a day. She has several other symptoms and signs, over the years, which all point (Textbook) to Lupus. My Mother is an exceptionally strong woman (both physically and willfully), which makes "taking care" of her that much more difficult. She does have a Medical license and it boggles my mind that she never paid attention to her own symptoms, but I am noticing a sense of denial and maybe it is somethng she intentionally ignored.

Sorry for the rambling, but I need to know, undertsand make a plan for her next steps for treatment. We have seen and had all test done by a local, Board Certified, Pulmonogist, to "monitor" for her, already diagnosed, Pulmonary Fibrosis. However, I firmly believe we need THE BEST Rhemotologist-Lupus Expert, immediately, to STOP, or slow down the attack against her lungs. Again, with her being so "Strong Willed" and possibly in denial, I would ike to fly her to Los ANgeles and admit her to Cedar's, where I have acces to every possible specialist nevessary. Instead, my Mom wants to take things "slowly".

As I said before, I am sorry your question has not been answered about your wife, but I DO hope her prognosis was/is excellent! It is a scary disease, to read about and when the tests all say those words, you type them into Google and learn "NO TREATMENT", what do we do? I am studying more about Esbriet®, by InterMune, being used currently in the EU. The medication is in Phase Three Clinical Trails in the USA, so we are off to Europe once we know our treatment  plan with Lupus.

I do wish you and your wife well. If you are interested oin the medication Esbriet, it is also being marketed and used in Japan, under the name Pirespa®. Let's hope our FDA pushes this through, since we currently have tools to treat the disease. 

Thank you!