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Old 11-04-2008, 11:31 AM
 
Location: Jersey
253 posts, read 875,129 times
Reputation: 106

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Hello,

Does anyone have any first hand experiences with non-specific pulmonary fibrosis? I've read up on it on numerous websites. If it's on the web, I've probably read it. My husband has been ill for almost a year, with breathing issues seriously since spring 08. He has hospitalized in September, and the diagnosis was "non-specific pulmonary fibrosis". It's the "nonspecific" part that scares the you know what out of us. Today's visit with the pulmonologist didn't bear any good news. He's not responding to the prednisone, so they're going to wean him off of that. Doc feels that either
a. they have the right diagnosis, but he's just one of those people that doesn't respond to the medication.
Or
b. Even though they did 2 biopsys (lung and lymph nodes) that they could have missed early stage of cancer.

I personally don't believe the cancer possibility because if he's been sick for a long time, cancer would have shown up by now, and his blood work is OK for that.

He has a doctor's appointment in NYC next week for a second opinion with a respected specialist, so we're hoping that he may have a different point of view or angle to test out.

If anyone has had similar diagnosis or experience, would like to hear feedback.

Thank you in advance.
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Old 11-05-2008, 06:01 PM
 
217 posts, read 368,036 times
Reputation: 82
i wouldn't take any chances. have them do an mri with contrast.. all around the lung area also around sinus' too
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Old 11-06-2008, 07:26 AM
 
Location: Broward County
2,518 posts, read 9,690,358 times
Reputation: 1333
the cold weather really effects people with pulmonary fibrosis. good luck/
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Old 11-06-2008, 07:51 AM
 
Location: Jersey
253 posts, read 875,129 times
Reputation: 106
Quote:
Originally Posted by coolnana5 View Post
i wouldn't take any chances. have them do an mri with contrast.. all around the lung area also around sinus' too
He's had the MRI, CAT scans, etc. We're waiting to get approval from insurance company for a CAT scan with PET. That's the one that's supposed to show any cancer cells.

He also has appointment on Monday in NYC with a doctor from Columbia Presbyterian, so hoping that he can add some more details for us.

Thank you for the suggestion.
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Old 11-27-2008, 08:59 AM
 
14,930 posts, read 26,631,362 times
Reputation: 18131
Quote:
Originally Posted by coolnana5 View Post
i wouldn't take any chances. have them do an mri with contrast.. all around the lung area also around sinus' too
^^ This is not good, sound medical advice. Continue to consult your physician. Consider asking for a referral to Dr Tom Petty, a leading Pulmonologist.
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