Re: Re: Funny, You Don't Look Sick

[Guest guest]

Dee,

Hi, I also have NSIP. There are a couple of different types one is cellular NSIP and the other is fibrotic or fibrosing NSIP. Unfortunately I have fibrotic NSIP and while it does have a longer life expectancy than IPF, it has no effective treament. The good news is I may have more time to lose weight and get healthy for a lung transplant than I was initially told. The bad news is it is very likely that I will still need a transplant at some point.

Cellular NSIP (the kind I don't have) does seem to respond to steroid treatment and also goes into long periods of remission. It sounds like this is what your pulmo believes you may have.

I've read there is also a "mixed NSIP" but I don't know anything more about it.

Here's hoping you go into remission for about 50 years!!

Beth Fibrotic NSIP 06/06

Don't try to explain it, just nod your head.

Breathe in, breathe out. Move on. J. Buffett

Re: Re: Funny, You Don't Look Sick

Last Tues I went to a second pulm doc for his opinion. He studied my CAT scans and said he saw some scarring, but laughed and said I would be around for a long time and check back with him in late Feb. Now, what am I supposed to think?? First doc said IPF and I know something is wrong with me. SOB and chest pain.. not normal even for my 68 yr old body.

My sister, an RN who owns a home health co, never heard of IPF. I gave her some brochures. She and my husband agreed that pulm doc #2 was right and there is nothing wrong with me, sister added that "everyone is dying". Do you think they lack understanding or is it me?

Sister's comments on new Medicare rules on oxygen use was and I quote, "there are a lot of Nigerian scams billing medicare for oxygen". WHAT!!!! What does that have to do with our health. Get the scammers, help IPFers who have paid into the system out our A**es!

Love you ALL.. Gale in TX