Guest guest Posted November 9, 2009 Report Share Posted November 9, 2009 We have many members here who have been to National Jewish and all the comments I remember have been positive like hers. I would follow up. Not sure I understand if you called a couple of weeks ago why you haven't had one scheduled. You did talk to the coordinator of the IPF unit I'm assuming. I'd make another call. > > I was wondering if anyone had been there. I am waiting to hear from them. Called for an appointment a couple of weeks ago. Sure hope I don't have to wait along time. It makes me happy that you liked the doctors and techs, nurses etc. Hopefully I will have the same feelings if they will see me. > > Gascoigne IPF july/2009 South Dakota > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 dyanne glad to hear you had a positive experience at National Jewish you might be able to contribute info for the book about being able to work full time and using oxygen and the arrangements that you made for this Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: National JewishTo: Breathe-Support Date: Sunday, November 8, 2009, 1:04 AM Dear Air Family,Wow, spent all week at National Jewish in Denver. What an amazing place. I have never seen more caring, happy, nice people in my life! Monday and Tuesday were the worst as I had most of the testing, they took at least a gallon of blood LOL and was still getting acclimatized. Going from 1145 feet to 5000+ is hard on the ole bod. Plus I developed a sinus infection while there that they nipped with some amoxicillan. Saw Dr. Soloman and Dr. Fisher (a ruemy) and met the genetics researcher whose name escapes me right now, plus a zillion techs and nurses. It was rather hilarious as both doctors could not get over how "complicated" I was! I will get the final report in about 3 weeks or so but it looks to be autoimmune related, probably NSIP but without a biopsy no way to tell for sure and he definately does not want to put me through that. The funniest part was when they asked me about my RA. I said HuH? Yeah it says here on your 2002 hospital report you have RA. Again HUH? Turns out that on the "normal" RA blood test I show negative but on a new test I show extremely high. They did it twice to make sure. I've been in pain my whole life but have no bone deformities. Makes sense to me although they don't quite know what to make of it, explains why I don't hurt on prednisone. They really taught me a lot about exercise and that I really do need 8 lpm when I'm active. He wants to raise my Imuran and the goal is to stabalize me and hopefully see me again in 6 months or so. I'm very excited by it all and really want to thank you guys. Without this board I would never have know they were even there!!Dyane Phoenix IPF 02 Quote Link to comment Share on other sites More sharing options...
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