More Questions!

[Guest guest]

Hi Group,

I have been reading all of your old posts this morning(I am on 328)

and have lots of new questions. First of all I have been diagnosed

with advanced interstitual lung disease ( from reading the internet I

am taking this to mean I have advanced pulmonary fibrosis but am not

sure).My lungs have very heavy scarring throughout 80% of my

lungs,heaviest in the upper regions of the lungs around and in the

bronchial tubes and only the bottom 20% of my lungs are clear. I have

had a cough for 2 years, wheezing off and on, sometimes so loud I

can't sleep at night, but other times none. When they did the 6

minute exercise test (early in the morning) my o2 level was pretty

good. 98% resting, 91% at end of test. By the end of each day though,

I have ice cold hands and feet, purple mottling in my legs and have a

very hard time breathing. Also have twitching in my right arm some

nights. At what point do you know you should have oxygen? Does

advanced mean end stage? Does anyone else have purple mottling or

twitchy arms. I am calling to switch doctors today as I have asked

him all these questions and his reply is that he can't answer anything

until I have the open lung biopsy. Thanks-