Re: Heading to UCLA

[Guest guest]

Good for you ...you go girl! C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Tue, December 1, 2009 7:25:49 PMSubject: Heading to UCLA

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!!!!!!

[Guest guest]

I hate to sound so 90's but You Go Girl! Sounds like you got your ducks in a row. I know this board really galvanized me. Keep in touch and so glad you are being pro-active. You sound like me. I keep telling my girls you will have to drag me out kicking and screaming cuz I won't just lie down. When the time comes for Hospice I will know and it will be a long time yet! Best of luck and boy would I be looking for a new pulmodude. He sounds like some kind of horses patootie.Dyane,

54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,

Lipodermatosclerosis, Diabetes, and now a RA like autoimmune component,

yadda yadda yadda."Life is not a journey to the grave with

intentions of arriving is a pretty, well-preserved body, but rather to

skid in broadside, thoroughly used up, totally worn out, chocolate in

one hand, Margaritas in the other, loudly proclaiming "Holy **** What a

ride!".">> 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!!!!!!>

[Guest guest]

Tammy,

Yay! I'm so happy you are taking control of the situation and doing what you need to do to understand what's happening. I totally understand your choice and I'm anxious to hear about your experience in LA as we've not had many members seen there that I can think of.

Amazing and disturbing that your pulmo would just hand you scripts without even discussing the biopsy results. I wish I could say it surprised me but the truth is I've known many doctors who would do just that.

Please keep looking after yourself and keep us posted!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tue, December 1, 2009 10:25:49 PMSubject: Heading to UCLA

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!!!!!!