Caregiver: Don't apologize for the frustration. Let yourself feel it so it doesn't add up, you do have a long hard pull in front of you. I actually kept my mom at home with the care of Hospice for the last 2 months so I've been the whole road of emotions, frustrations and questions.
You are right. PF is a generic term for "it's in the lungs but we don't know all the particulars" (my words and theirs). The additional name of ideopathic is even more generic and just means "don't know why, just know it's there." The most important thing is to be dealing only with a pulmonary specialist. Most likely your hubby is on prednisone meds of some degree. Although the side effects may not be pleasant, with this disease it's the only effective way, to date, of slowing its progression. My mom was just very unfortunate to have had an extremely aggressive form which the docs said they (here in Chicago) had never seen so aggressive before. But through my experience with her, I have known and corresponded with some who have dealt with this and lived anywhere from 4-15 years. A lot has to do with the will of the person, the persistence with which they control their diet, meds, exercise (even tho its difficult it's necessary to keep the strength up).
Good luck and God Bless. I'll try to check in from time to time or you can e-mail me if you just need to vent your frustrations to someone who's been the caretaker of this sad disease. kdb
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