Re Patti

[Guest guest]

Good Morning Friends,

Well I spent 5 1/2 hours at the University of Chicago yesterday. Yes, they were running way behind schedule but didn't rush at all when they finally got to me. They were not at all upset that I brought my husband and two daughters with me. They immediately brought in more chairs.

I got both encouraging news and some not so much!

I am so glad I decided to go to a teaching hospital because Dr. Strek is insistent that she is not yet willing to throw in the towel and commit to a diagnosis of Idiopathic Pulmonary Fibrosis. Yes, all my scans show I do have PF and my PFT stats are dropping but the 22 tubes of blood they took were all negative, so no auto-immune problems. I did find out something very interesting. Throughout my entire adult life I have always had a lot of bladder infections, and I was always treated with a prescription called Macodantin or Macrobid (generic name Nitrofurin). Well this is a dangerous drug and can cause PF. She wants me to go back in my history as far I can find records and try to find out how often I took this medication. I actually just had a bladder infection and had taken this medication just a week ago. Can you believe that!! Needless to say, she said never ever take this medication again. I am to return in Feb and repeat the PFT's and see if the scores have gone up or remained the same. If they have gone down again as they have in the last two years and even the past 2 months, then she suggests the VATS biopsy at U of Chicago. She will have to look further as I am still basically asymptomatic yet all my scores are really very low. My diffuse score was 34. She said my heart must be very strong as I do not yet require oxygen nor do I have much trouble being out of breath.

I do still have PF but I left not yet being prescribed oxygen or Prednisone so I thank the dear Lord for that blessing.

Patti, 59, Indianapolis, IPF 2007