Heading to UCLA

[Guest guest]

Thanks to everyone who responded to all of my questions. I spoke with both

centers (Denver and UCLA) and I have decided to head out to LA and meet with

Dr.Lynch and Dr.Deng who are both with the ILD clinic. Part of the deciding

factor is that my Aunt was the coordinator for the Heart Lung transplant

center there and all the staff know her and were very accomedating to me when I

spoke with them. I am set to go on December 15th. I just bought my plane ticket

so it is all systems a go!!! I have been gathering all my medical records from

the doctors here in Omaha, and I should be getting my biopsy slides back from

Syracuse this week so I will get to hand deliver them to the pathologist in LA

as well. I also wanted to choose a place that was all inclusive and would be

able to see me all the way through a lung transplant if that is what God has in

store for me someday.

I was a little frustrated today when I went to the Pulmonologist here in Omaha

today for my biopsy follow up appointment. First off he was 1 hour and 15mins

late for the appointment then when he walked into the room he immediately handed

my not 4 but 5 prescriptions for different medications. This all before he even

discussed the biopsy results with me. Thankfully my surgeon is am amazing guy

and had already discussed these results with me at length the day before the

holiday so I had time to research and talk to you all about my options. I think

the doctor was suprised when I told him I was going to forgo treatment at this

time and would be heading out to UCLA in two weeks to meet with the experts. I

am so sad for the other 99% of the population who does not have the medical

background, or know how to be their own advocate. He also was very vaugue when

answering any of my questions, he would not commit to any specifics which is so

frustrating. So I owe all of you a great big THANK YOU!!!!!!!!!!!!! It was with

your support and knowledge that I was able to move beyond my own shock, fear,

and anger to research and look at all my options before I start any treatment or

come to terms with a particular diagnosis. As I told my husband I cant believe

that this is all a mistake because when I get the results from the experts I

dont want to have to start this greif process all over again. So for now I am

proceeding forward with the belief that I have been diagnosed with UIP. However

Just because I have this diagnosis attached to my medical record does not mean

this diagnosis has me. I am stubborn, strong willed and will fight this with a

strength unmatched by anyone. So for now I just want to say thank you again for

welcoming me into your lives and for your friendship and support as I march down

this path with my head held high and my determination full steam ahead!!!!!!