Here we go again.... now I have UIP

[Guest guest]

What a roller coaster. Originally in 2006, I had a pulmonologist tell me I had

ILD, but it wasn't COPD or Sarcoidosis (what does that leave?). That was all he

told me. Then I had Best Doctors in Boston tell me I really needed more

testing. I found our group and went to National Jewish where I was told I

" probably " had cellular NSIP. Only a biopsy would prove what I had. The local

pathologist hit every possible Pulmonary Fibrosis buzz word in his review of my

slides you can imagine. Honeycombing, NSIP like with indications of UIP or IPF.

So my pulmonologist said he would send it to Denver for a reading there. He

changed his mind and sent it to the Mayo Clinic and the pathologist there, Tom

Colby. Now I am told I have UIP and the prognosis is 3 years. Someone forgot

to tell me... I have already outlived that prognosis. Does that mean I am on

borrowed time now? Bruce, do you have any insight? My pulmonologist went on to

say that none of the clinical trials that he was aware of offered any drugs that

he had any confidence in. He went on to tell me that prednisone was not an

option. Go figure. I am now back at square one AGAIN. If I go in for another

biopsy, can I get another reading? LOL What a racket. And, insurance doesn't

pay squat on oxygen equipment. I am getting a little less than 50% of it paid

for. At $600.00 a month, I am going to go broke in a hurry. I guess it would

be less expensive to just buy the equipment and leave it at that.

Stefani

ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006, Sleep Apnea

4/2009