My update from UCLA

[Guest guest]

Tammy,

Glad to hear your experience at UCLA is going good! We really do all need to be so proactive about our own health.

Patti, Indianapolis, IPF 2007

[Guest guest]

I'm wondering, does that include biopsies too or is a biopsy a sure bet.To: Breathe-Support Sent: Thu, December 17, 2009 8:37:24 AMSubject: Re: My update from UCLA

Tammy

Your situation is one we see repeated every day. We see pulmonologists

diagnosing IPF when thats not the case and even the most perfunctory

look at the information would dispel the likelihood. We see failure to

look at the connective tissue disease possibilities. All those things

they mentioned made the odds so overwhelmingly against you having IPF.

We see hospital diagnoses of IPF or even just PF that don't turn out to

be the case. I'll strongly advise for the millionth time or so that

anyone get to a major teaching university with an Interstitial Lung

Disease program at least for a full second opinion. The risk is having a

treatable disease and getting no treatment.

>

> 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

>