Guest guest Posted July 16, 2007 Report Share Posted July 16, 2007 Speaking of second opinions and searching for more info on our health and diagnosis. Joyce D. when I visited last I told you I talked to that doctor about blood tests for Sarcoid and connective tissue diseases etc. You said you would recommended going to a Rheumatologist (no clue how to spell) rather than my primary because they would know what tests to order. I was hoping for your (and anyone else's) input as to which tests you've had / which ones you know I should get so that I'm armed w/ that info when I call my primary or a Rheumy. Thanks, Kerry IPF '01 S. IN > > > > Judy, > > Don't be afraid to get another opinion. My doctor in Lima said I > > didn't need a second opinion, didn't need O2, didn't need > > therapy...just go home, take prednisone, and come back in 6 months. I > > asked him what he was going to do, wait until it was too late to get > > help? I left and never returned to his office. My family doctor gave > > me a referral to OSU. Within a week I was in and had a whole new > > outlook. Originally my doctor said I would probably need a double > > lung, but I only had a single. When I went into surgery I didn't say > > goodbye to my wife and sons, I said " See you in a few hours. " > > > > Yes, you are right. It is time consuming. It is expensive. Everyone > > has to come up with their own answers. Good luck! > > Greg S. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2007 Report Share Posted July 16, 2007 Kerry, Some of the tests that might be ordered are the normal CBC, Metabolic, Creanine levels, etc. But, the test for ANA and DNA antibodies is one that will be ordered. Also other antibody tests like SM and SM/RNP, SSA, SSB, etc. are ordered. The ANA is usually the main one they look at. Now, mind you, I only know anything because of what I can read. Your pulmo may have ordered all these tests when making a diagnosis. I know it takes about 9 vials of blood and in St. Louis they took 18 vials. Usually pulmonologist will try and rule out autoimmune disease as a cause for your fibrosis. Have you made any plans yet to see Dr. McConnell. > > >> > > Judy,> > > Don't be afraid to get another opinion. My doctor in Lima said I> > > didn't need a second opinion, didn't need O2, didn't need> > > therapy...just go home, take prednisone, and come back in 6 > months. I> > > asked him what he was going to do, wait until it was too late to > get> > > help? I left and never returned to his office. My family doctor > gave> > > me a referral to OSU. Within a week I was in and had a whole new> > > outlook. Originally my doctor said I would probably need a double> > > lung, but I only had a single. When I went into surgery I didn't > say> > > goodbye to my wife and sons, I said "See you in a few hours."> > >> > > Yes, you are right. It is time consuming. It is expensive. > Everyone> > > has to come up with their own answers. Good luck!> > > Greg S.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2007 Report Share Posted July 16, 2007 Kerry, Did you decide to see Dr. McConnell. I think that would be your first move. When I called there they tried to make an appt. with a jr. doc, but I told them I was willing to wait to see him. Turns out that my insurance wouldn't pay. But, I was directed to him by my pulmo as first choice for consult and I have heard his name from patients who seem to really like him. He would determine what testing that you still may need. Some of the tests that seem usual for autoimmune involvment is ANA and DNA antibodies. There are about a million. Usually it takes 9 vials of blood, but in St. Louis they took 18. I just think you have a right to know and a need to know....exactly what is going on inside your body. I don't understand the DLCO thing with you either. You are in my prayers. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > > >> > > Judy,> > > Don't be afraid to get another opinion. My doctor in Lima said I> > > didn't need a second opinion, didn't need O2, didn't need> > > therapy...just go home, take prednisone, and come back in 6 > months. I> > > asked him what he was going to do, wait until it was too late to > get> > > help? I left and never returned to his office. My family doctor > gave> > > me a referral to OSU. Within a week I was in and had a whole new> > > outlook. Originally my doctor said I would probably need a double> > > lung, but I only had a single. When I went into surgery I didn't > say> > > goodbye to my wife and sons, I said "See you in a few hours."> > >> > > Yes, you are right. It is time consuming. It is expensive. > Everyone> > > has to come up with their own answers. Good luck!> > > Greg S.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2007 Report Share Posted July 16, 2007 Kerry, Double answer or something. Think I started and went to make dinner, then started again. 02 Deficiency! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > > > >> > > > Judy,> > > > Don't be afraid to get another opinion. My doctor in Lima said I> > > > didn't need a second opinion, didn't need O2, didn't need> > > > therapy...just go home, take prednisone, and come back in 6> > months. I> > > > asked him what he was going to do, wait until it was too late to> > get> > > > help? I left and never returned to his office. My family doctor> > gave> > > > me a referral to OSU. Within a week I was in and had a whole new> > > > outlook. Originally my doctor said I would probably need a double> > > > lung, but I only had a single. When I went into surgery I didn't> > say> > > > goodbye to my wife and sons, I said "See you in a few hours."> > > >> > > > Yes, you are right. It is time consuming. It is expensive.> > Everyone> > > > has to come up with their own answers. Good luck!> > > > Greg S.> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2007 Report Share Posted July 16, 2007 Hi Kerry You Should have a Hypersenstivity Pneumonitis antibody panel blood test. It could show reasons for you fibrosis if you are allergic to mold, dust, hay, birds all sorts of things http://pennhealth.com/ency/article/000109.htm http://www.medicinenet.com/hypersensitivity_pneumonitis/article.htm#toch P UIP 8/00 ILL --- Kerry wrote: > Speaking of second opinions and searching for more > info on our > health and diagnosis. Joyce D. when I visited last > I told you I > talked to that doctor about blood tests for Sarcoid > and connective > tissue diseases etc. You said you would recommended > going to a > Rheumatologist (no clue how to spell) rather than my > primary because > they would know what tests to order. I was hoping > for your (and > anyone else's) input as to which tests you've had / > which ones you > know I should get so that I'm armed w/ that info > when I call my > primary or a Rheumy. > > Thanks, > Kerry > IPF '01 > S. IN > > > > > > > > Judy, > > > Don't be afraid to get another opinion. My > doctor in Lima said I > > > didn't need a second opinion, didn't need O2, > didn't need > > > therapy...just go home, take prednisone, and > come back in 6 > months. I > > > asked him what he was going to do, wait until it > was too late to > get > > > help? I left and never returned to his office. > My family doctor > gave > > > me a referral to OSU. Within a week I was in and > had a whole new > > > outlook. Originally my doctor said I would > probably need a double > > > lung, but I only had a single. When I went into > surgery I didn't > say > > > goodbye to my wife and sons, I said " See you in > a few hours. " > > > > > > Yes, you are right. It is time consuming. It is > expensive. > Everyone > > > has to come up with their own answers. Good > luck! > > > Greg S. > > > > > > > > ________________________________________________________________________________\ ____ Food fight? Enjoy some healthy debate in the Yahoo! Answers Food & Drink Q & A. http://answers.yahoo.com/dir/?link=list & sid=396545367 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 Joyce, I talked to that doctor again (my friend's friend) and she gave me a list of bloodwork she would recommend. I checked and McConnell is on my insurance and called his office to make an appointment. I'm scheduled to see him the first week of September. I don't know if I should try to get the bloodwork done before that or not. I'm totally worried, but I gotta do something. Gotta cut this short and go take care of the kids. Ker > > > > > > > > > > Judy, > > > > > Don't be afraid to get another opinion. My doctor in Lima said I > > > > > didn't need a second opinion, didn't need O2, didn't need > > > > > therapy...just go home, take prednisone, and come back in 6 > > > months. I > > > > > asked him what he was going to do, wait until it was too late to > > > get > > > > > help? I left and never returned to his office. My family doctor > > > gave > > > > > me a referral to OSU. Within a week I was in and had a whole new > > > > > outlook. Originally my doctor said I would probably need a > double > > > > > lung, but I only had a single. When I went into surgery I didn't > > > say > > > > > goodbye to my wife and sons, I said " See you in a few hours. " > > > > > > > > > > Yes, you are right. It is time consuming. It is expensive. > > > Everyone > > > > > has to come up with their own answers. Good luck! > > > > > Greg S. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 Kerry, Yeaaahh! You made ME feel better. You just did a smart thing. I looked at his picture on the Jewish Hospital site...he LOOKS nice. I dread new docs. If you can get your GP to order them, I think it would be good to have them already.....but, sometimes they want thier own...??? Enjoy those sweeties. Construction over yet? Hugs, Joyce D. > > > > > >> > > > > > Judy,> > > > > > Don't be afraid to get another opinion. My doctor in Lima > said I> > > > > > didn't need a second opinion, didn't need O2, didn't need> > > > > > therapy...just go home, take prednisone, and come back in 6> > > > months. I> > > > > > asked him what he was going to do, wait until it was too > late to> > > > get> > > > > > help? I left and never returned to his office. My family > doctor> > > > gave> > > > > > me a referral to OSU. Within a week I was in and had a > whole new> > > > > > outlook. Originally my doctor said I would probably need a> > double> > > > > > lung, but I only had a single. When I went into surgery I > didn't> > > > say> > > > > > goodbye to my wife and sons, I said "See you in a few > hours."> > > > > >> > > > > > Yes, you are right. It is time consuming. It is expensive.> > > > Everyone> > > > > > has to come up with their own answers. Good luck!> > > > > > Greg S.> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 Oh, I'll have to check him out. I'm nervous you know. I really don't know what I'm doing, what I want from him, what I'm up for, what... But I am following up and doing something. We'll see. The house continues to come along... work, work, work. Back to the kids and I gotta go take out the trash and w/ construction you know I'm gonna be huffing and puffing to get it all out to the curb (hubby is out of town). Ker > > > > > > > > > > > > > > Judy, > > > > > > > Don't be afraid to get another opinion. My doctor in Lima > > said I > > > > > > > didn't need a second opinion, didn't need O2, didn't need > > > > > > > therapy...just go home, take prednisone, and come back in 6 > > > > > months. I > > > > > > > asked him what he was going to do, wait until it was too > > late to > > > > > get > > > > > > > help? I left and never returned to his office. My family > > doctor > > > > > gave > > > > > > > me a referral to OSU. Within a week I was in and had a > > whole new > > > > > > > outlook. Originally my doctor said I would probably need a > > > double > > > > > > > lung, but I only had a single. When I went into surgery I > > didn't > > > > > say > > > > > > > goodbye to my wife and sons, I said " See you in a few > > hours. " > > > > > > > > > > > > > > Yes, you are right. It is time consuming. It is expensive. > > > > > Everyone > > > > > > > has to come up with their own answers. Good luck! > > > > > > > Greg S. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.