Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 Tammy, Again I'm so happy you have had such a good experience at UCLA. You know you wondered how many people get a UIP/IPF diagnosis and may in fact be misdiagnosed.....personally I think there are tons of people out there who don't have the knowledge or resources to pursue other opinions and are in fact misdiagnosed. It drives me crazy the lack of ILD knowledge of the average community based pulmonologist. I'm so happy you got some real answers! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thu, December 17, 2009 12:57:30 AMSubject: My update from UCLA 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 Nothing is a sure bet. It's all based on individual circumstances and then personal choice. > > > > 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 I'm really glad I come in here...y'all have so much experience with this disease. I just go to the pulmodude and let him tell me what to do. I need to get active and fight this thing. I guess I gave up and waiting to die. I seldom post cause I figure i have nothing to add. thanks for putting up with me. I read the posts daily. <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: Breathe-Support Sent: Thu, December 17, 2009 3:27:13 PMSubject: Re: My update from UCLA Nothing is a sure bet. It's all based on individual circumstances andthen personal choice.> >> > 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 atUCLA.> I have been out here since monday and it has been nothing butwonderful.> 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 theexception> 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 Iwas> 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 theysaid> first of all you have had symptoms for at least 4 years and you havehad> no change in )syptoms, your age, SPO2 of 98-100% on room air (evenwith> 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 peoplehas> 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 toseak> an expert opinion my heart breaks for all of them. Although Iunderstand> that this is still very serious and> > life altering and some would even say still terminal I have arenewed> sense of hope and faith that I will continue on the right path andfind> the answers that I so desperately need. I am very obsessive comulsive> and a perfectionist (typeA personality to a fault) so to actually havea> 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 postedon> 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> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 you post everyday!!! Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: My update from UCLATo: Breathe-Support Date: Thursday, December 17, 2009, 4:16 PM I'm really glad I come in here...y'all have so much experience with this disease. I just go to the pulmodude and let him tell me what to do. I need to get active and fight this thing. I guess I gave up and waiting to die. I seldom post cause I figure i have nothing to add. thanks for putting up with me. I read the posts daily. <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT> From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, December 17, 2009 3:27:13 PMSubject: Re: My update from UCLA Nothing is a sure bet. It's all based on individual circumstances andthen personal choice.> >> > 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 atUCLA.> I have been out here since monday and it has been nothing butwonderful.> 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 theexception> 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 Iwas> 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 theysaid> first of all you have had symptoms for at least 4 years and you havehad> no change in )syptoms, your age, SPO2 of 98-100% on room air (evenwith> 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 peoplehas> 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 toseak> an expert opinion my heart breaks for all of them. Although Iunderstand> that this is still very serious and> > life altering and some would even say still terminal I have arenewed> sense of hope and faith that I will continue on the right path andfind> the answers that I so desperately need. I am very obsessive comulsive> and a perfectionist (typeA personality to a fault) so to actually havea> 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 postedon> 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> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 You told on me Joyce...LOL <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: Breathe-Support Sent: Thu, December 17, 2009 4:48:44 PMSubject: Re: Re: My update from UCLA you post everyday!!! Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Soulliere <johnsbatik (AT) yahoo (DOT) com>Subject: Re: Re: My update from UCLATo: Breathe-Support@ yahoogroups. comDate: Thursday, December 17, 2009, 4:16 PM I'm really glad I come in here...y'all have so much experience with this disease. I just go to the pulmodude and let him tell me what to do. I need to get active and fight this thing. I guess I gave up and waiting to die. I seldom post cause I figure i have nothing to add. thanks for putting up with me. I read the posts daily. <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT> From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, December 17, 2009 3:27:13 PMSubject: Re: My update from UCLA Nothing is a sure bet. It's all based on individual circumstances andthen personal choice.> >> > 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 atUCLA.> I have been out here since monday and it has been nothing butwonderful.> 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 theexception> 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 Iwas> 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 theysaid> first of all you have had symptoms for at least 4 years and you havehad> no change in )syptoms, your age, SPO2 of 98-100% on room air (evenwith> 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 peoplehas> 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 toseak> an expert opinion my heart breaks for all of them. Although Iunderstand> that this is still very serious and> > life altering and some would even say still terminal I have arenewed> sense of hope and faith that I will continue on the right path andfind> the answers that I so desperately need. I am very obsessive comulsive> and a perfectionist (typeA personality to a fault) so to actually havea> 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 postedon> 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> >> Quote Link to comment Share on other sites More sharing options...
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