Guest guest Posted June 24, 2009 Report Share Posted June 24, 2009 Be careful, don't overdo but most of all HAVE FUN!!!! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, June 24, 2009 8:31:38 AMSubject: Re: National Jewish calledHi Group, I am headed out to Kentucky this AM. I am excited to just get away for a few days. I am hoping and praying this doesn't prove to be to much but I will have excellent help. put new tires on my car and it drives like a new one. Don't feel one bump and for out here that is saying something. Keep us in your prayers for a few days. I'll be back the first of the week. Love to All. you all had BETTER MISS ME.... RULE # 8374633....k ! Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. Joyce, That is good news! I'm so glad for you and I also would have confidence in NJ's conclusions. They have the most complete picture of your overall history in addition to your slides. I'll keep you in my prayers that the scarring stops and stablizes. How are you feeling these days? Are you using the O2 the way you should? Please look after yourself! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: greycharlie <greycharlie@ q.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, June 24, 2009 2:41:41 AMSubject: National Jewish called Hi everyone, National Jewish finally got th elides from my biopsy and they told me Mayo Clinic was wrong. I do NOT have IPF but my fibrosis is caused from the birds. they totally disagree with Mayo Clinic. Also Mayo clinic said I was stable but NJ said it is of concern to them that I still have fibrotic activity occuring after the birds have been removed. Dr. Cosgrove said in rare cases that happens and it should abate in a few months. Sometimes, he said, it still contnues to scar and they don't understand why. He said he wants meto have a PFT in 3 monthts and send him and my pulmonologist a copy and make an appointment at St. Jo's in Phoenix to discuss the results. Meanwhile Dr.l Cosgrove would have discussed the results with Dr. Hodges. If after 6 months the scarring has not ceased it is worrysome and I may need another visit to NJ. He said continuous scarring for enviromental fibrosis is very rare and he doesn't expect it. He said he is cautiously optimistic. But, He assured my I don' thave IPf. Good news. He explained why they have come to a different dicision about the slides but it was all medical and I din't really understand it other then diagnosing ILD is a subtle and difficult proceedure and thought the pathologists at Mayo are world class they do not deal exclusivly with reading the results of slides from lungs and they do noth have all the information that NJ aquired while I was there. Anyway tha tis good news! Joyce Rudy AZ birds.... Quote Link to comment Share on other sites More sharing options...
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