My update from UCLA

[Guest guest]

Well hello everyone I hope this finds you all well and almost ready for the holidays. I am writting with an update of my experience at UCLA. I have been out here since monday and it has been nothing but wonderful. Every person I have encountered has been helpful, friendly and encouraging so God Bless for that. I met with Rheumatology and efter a hour and half appointment many lab test and a complete head to toe assessment they have concluded that I have scleroderma which as we all know is a connective tissue disease that can cause fibrosis of the lungs. Because I am pretty asymptomatic (no symptoms) with the exception of my dyspnea (or SOB) on exertion we have decided to just start cellcept and reevaluate things in 6months., I then went to see Dr. Deng/Dr.Lynch with the ILD clinic and it is with great relief that I was told that I did not have IPF/UIP rather fibrotic NSIP which is being caused by the scleroderma. I

asked how they could be so certain when the doctors in Omaha told me I had IPF/UIP and they said first of all you have had symptoms for at least 4 years and you have had no change in )syptoms, your age, SPO2 of 98-100% on room air (even with 6min walk), the fact that my labs were all positive for autoimmune disease even in 2001 blah blah blah. So when I asked the ILD docs what they wanted to do they agreed 100% with Rheumatologys plan of cellcept and back in 3 months. So I think that the doctors in Omaha had no idea what to do for me rushed into a diagnosis and then wanted to turn me into a walking pharmacy without further consultation. This thought has consumed me since I found out all this and I wonder how many people has this happened to out there that dont have the knowlegde that I (all of us) did to seek and expert opinion, or that don't have the means to seak an expert opinion my heart breaks for all of them. Although

I understand that this is still very serious and life altering and some would even say still terminal I have a renewed sense of hope and faith that I will continue on the right path and find the answers that I so desperately need. I am very obsessive comulsive and a perfectionist (typeA personality to a fault) so to actually have a name that I can fight helps. Sounds stupid too many but helps me. Any way this is way longer then intended but thought you all would want to hear about my experience so far out here. I will be here two more days for the doctors then 2 days for myself so I will keep you all posted on what is happening. Thanks for the prayers and good thoughts you sent with me out here. I love all of my air family and wish you a wonderful holiday season. Tammy 35y.o. Omaha, NE Scleroderma 12/09 Fibrotic NSIP 12/09