Hi, I'm new.... got just tons of questions...

[Guest guest]

I was diagnosed with Ideopathic Interstitial Lung Disease in February of 2006

and the Pulmonary Specialist wanted to crack my chest and do exploratory

surgery. I opted out and have been looking for options and places to go for a

second opinion. My husband's company recently added a benefit that included a

(no cost to us) second opinion option through Boston's Best Doctors. Upshot was

that it was not an ACTIVE Interstitial Lung Disease, No-I should not let the

Pulmonary Specialist do the exploratory surgery. To establish a good diagnosis,

it was recommended that I see an academic pulmonary specialist and request a

CPAP titration (never had a CPAP test though they put me on 2L of O2 at night

when I came into the Dr.'s office with Shortness of Breath)., get a blood gas

test, and a full batch of lung volume tests as well as another CT scan (the

original was in January of 2006). My regular GP ordered the CT and called me in

less than a week to tell me she was sorry I had Pulmonary Fibrosis and if I

needed anything, to giver her a call! I haven't even finished the CPAP stuff

and have not had any of the other tests run. The Best Doctors would not give me

a referral to the University of Utah Pulmonary Rehabilitation program because

there was not enough information to warrant the referral.... So that is the

level of frustration I am at today. I have contacted our insurance company to

see what they will cover and where... it has been 2 weeks since I talked to them

and they are not answering my emails.

I just had to vent. Sorry. If anyone has a comment, please feel free to add to

this post.

Stefani