Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 Dontcha just love it when the experts use lots of big words that leave you understanding no more than when you started? Auggghhh! Glad you are back at work, though, and that your firm seems to be trying to accommodate your needs. Regards, B Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 To: Breathe-Support Sent: Wednesday, August 5, 2009 1:40:40 PMSubject: results of VATS????? Hi everybody,Well I saw my pulmo-dude last week and the surgeon yesterday and my diagnosis is not specifically one thing or another. I'm going to write it all here and maybe someone else had a similar result.Final Pathologic Diagnosis- Cellular Interstitial Inflammation with numerous fibroblastic foci and mild interstitial fibrosis.Biopsies show a cellular mixed inflammatory infiltrate of lymphocytes and histiocytes in the alveolar septae. Scattered throughout the alveoli are several small fibroblastic foci in the interstitium. There is mild interstitial fibrosis thickening of the alveolae septae. No dense honeycombing. Findings are consistant with a cellular fibrosing interstitial pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP. Presence of fibroblastic foci favors UIP but the dense fibrosing associated with UIP is not observed in the samples. A similar histologic picture may be observed in collagen vascular disease, pneumoconoisis, and hypersensitivity pneumonitis. Suggest correlation with clinical and radiologic findings.HUH? This is not how an episode of HOUSE MD ends! Anyway I am being referred by my pulmo-dude to Columbia Presbyterian Medical Center-NYC which has an interstitial lung disease department to be evaluated. I am back at work and so happy to be out of the house. My company is giving me a parking spot closest to the lobby and I also got from Motor Vehicles a handicapped placard since I am on O2 for exertion. - nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 nne,Welcome to the world of " we have no idea what is causing what you have " which is why Idiopathic really means Idiot Pathetic. LOLThey are really doing the best they can by sending you to the experts. They will hopefully be able to explain the gobbledegook and help you gain more of an understanding. Others here will also explain since they have seen the same words on their charts. Glad you are feeling better and back to work.Dyane Phoenix AZ IPF 02 Hi everybody, Well I saw my pulmo-dude last week and the surgeon yesterday and my diagnosis is not specifically one thing or another. I'm going to write it all here and maybe someone else had a similar result. Final Pathologic Diagnosis- Cellular Interstitial Inflammation with numerous fibroblastic foci and mild interstitial fibrosis. Biopsies show a cellular mixed inflammatory infiltrate of lymphocytes and histiocytes in the alveolar septae. Scattered throughout the alveoli are several small fibroblastic foci in the interstitium. There is mild interstitial fibrosis thickening of the alveolae septae. No dense honeycombing. Findings are consistant with a cellular fibrosing interstitial pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP. Presence of fibroblastic foci favors UIP but the dense fibrosing associated with UIP is not observed in the samples. A similar histologic picture may be observed in collagen vascular disease, pneumoconoisis, and hypersensitivity pneumonitis. Suggest correlation with clinical and radiologic findings.HUH? This is not how an episode of HOUSE MD ends! Anyway I am being referred by my pulmo-dude to Columbia Presbyterian Medical Center-NYC which has an interstitial lung disease department to be evaluated. I am back at work and so happy to be out of the house. My company is giving me a parking spot closest to the lobby and I also got from Motor Vehicles a handicapped placard since I am on O2 for exertion. - nne -- Dyane L. BillingsSenior Staff AccountantBall & McGraw PC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 Dyanne, It's funny what you said about the meaning of idiopathetic. I'm a big HOUSE MD fan and I saw an old episode where he is sitting around with his team and they are giving him differential diagnoses for a patient's illness. One of the doctors said " Idiopathetic... " (it wasn't PF) And House said " Idiopathetic - in Latin that means we idiots don't know what is causing it. " How true! > > > > > > > Hi everybody, > > Well I saw my pulmo-dude last week and the surgeon yesterday and my > > diagnosis is not specifically one thing or another. I'm going to write it > > all here and maybe someone else had a similar result. > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with > > numerous fibroblastic foci and mild interstitial fibrosis. > > Biopsies show a cellular mixed inflammatory infiltrate of lymphocytes and > > histiocytes in the alveolar septae. Scattered throughout the alveoli are > > several small fibroblastic foci in the interstitium. There is mild > > interstitial fibrosis thickening of the alveolae septae. No dense > > honeycombing. Findings are consistant with a cellular fibrosing interstitial > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP. > > Presence of fibroblastic foci favors UIP but the dense fibrosing associated > > with UIP is not observed in the samples. A similar histologic picture may be > > observed in collagen vascular disease, pneumoconoisis, and hypersensitivity > > pneumonitis. Suggest correlation with clinical and radiologic findings.HUH? > > This is not how an episode of HOUSE MD ends! Anyway I am being referred by > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which has an > > interstitial lung disease department to be evaluated. I am back at work and > > so happy to be out of the house. My company is giving me a parking spot > > closest to the lobby and I also got from Motor Vehicles a handicapped > > placard since I am on O2 for exertion. - nne > > > > > > > > > > -- > Dyane L. Billings > Senior Staff Accountant > Ball & McGraw PC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 nne,House and I have much the same sense of humor LOLSo much of what I have been through medically has been 'Idiopathic " that at times I want to beat my head against the wall...but then I smile and remember that they are just jealous because the voices are not talking to them ha ha ha Dyane Phoenix IPF 02 Dyanne, It's funny what you said about the meaning of idiopathetic. I'm a big HOUSE MD fan and I saw an old episode where he is sitting around with his team and they are giving him differential diagnoses for a patient's illness. One of the doctors said " Idiopathetic... " (it wasn't PF) And House said " Idiopathetic - in Latin that means we idiots don't know what is causing it. " How true! > > > > > > > Hi everybody, > > Well I saw my pulmo-dude last week and the surgeon yesterday and my > > diagnosis is not specifically one thing or another. I'm going to write it > > all here and maybe someone else had a similar result. > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with > > numerous fibroblastic foci and mild interstitial fibrosis. > > Biopsies show a cellular mixed inflammatory infiltrate of lymphocytes and > > histiocytes in the alveolar septae. Scattered throughout the alveoli are > > several small fibroblastic foci in the interstitium. There is mild > > interstitial fibrosis thickening of the alveolae septae. No dense > > honeycombing. Findings are consistant with a cellular fibrosing interstitial > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP. > > Presence of fibroblastic foci favors UIP but the dense fibrosing associated > > with UIP is not observed in the samples. A similar histologic picture may be > > observed in collagen vascular disease, pneumoconoisis, and hypersensitivity > > pneumonitis. Suggest correlation with clinical and radiologic findings.HUH? > > This is not how an episode of HOUSE MD ends! Anyway I am being referred by > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which has an > > interstitial lung disease department to be evaluated. I am back at work and > > so happy to be out of the house. My company is giving me a parking spot > > closest to the lobby and I also got from Motor Vehicles a handicapped > > placard since I am on O2 for exertion. - nne > > > > > > > > > > -- > Dyane L. Billings > Senior Staff Accountant > Ball & McGraw PC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 nne Let's sort through that a bit and it may not be as nebulous as it seems. Best thing is that you'll seen the doctor at the Columbia Presby ILD center. Also, they'll want the slides to do their own pathological evaluation. A pathologist more use to ILD's may be more definitive. At least get two pathologists reports. But best thing at Columbia is Pulmonologist can sit down and discuss with Pathologist. Some key words.... " correlate with clinical and radiology findings. " " similar histologic picture may be observed in collagen vascular disease, pneumoconoisis, and hypersensitivity pneumonitis " . " No dense honeycombing " . Columbia quite likely will be able to do labs, more evaluation and perhaps make a whole lot more sense out of it. They'll study your history, medical and otherwise. They''ll do their own HRCT's (no they won't just accept the ones you have, they'll want their own, their way, their equipment). They'll run labs. They'll review the biopsy slides. Then they'll attempt to make sense of it. Actually its much like House. The first part of the show is always confusing. But House questions. They study. Then conclusions are reached. This isn't the end of the show yet. Get to Columbia with all your records, the biopsy slides, get work done there, and I'm optimistic they'll help you feel much less confused at some point. While the pathologist did mention UIP, he also said many things he'd expect with UIP not there. Even if UIP, if it was hypersensitivity caused then its not IPF and the cause might be removed. If it's NSIP may have more likelihood of successful treatment. The amount of inflammation mentioned indicates some treatment might help at least with that. So, don't turn House off in the first thirty minutes. Got to Columbia and see the rest of the story. To be continued...... > > Hi everybody, > Well I saw my pulmo-dude last week and the surgeon yesterday and my diagnosis is not specifically one thing or another. I'm going to write it all here and maybe someone else had a similar result. > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with numerous fibroblastic foci and mild interstitial fibrosis. > Biopsies show a cellular mixed inflammatory infiltrate of lymphocytes and histiocytes in the alveolar septae. Scattered throughout the alveoli are several small fibroblastic foci in the interstitium. There is mild interstitial fibrosis thickening of the alveolae septae. No dense honeycombing. Findings are consistant with a cellular fibrosing interstitial pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP. Presence of fibroblastic foci favors UIP but the dense fibrosing associated with UIP is not observed in the samples. A similar histologic picture may be observed in collagen vascular disease, pneumoconoisis, and hypersensitivity pneumonitis. Suggest correlation with clinical and radiologic findings.HUH? This is not how an episode of HOUSE MD ends! Anyway I am being referred by my pulmo-dude to Columbia Presbyterian Medical Center-NYC which has an interstitial lung disease department to be evaluated. I am back at work and so happy to be out of the house. My company is giving me a parking spot closest to the lobby and I also got from Motor Vehicles a handicapped placard since I am on O2 for exertion. - nne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 nne, I knew Bruce would come through, the man is amazing! Dyane Phoenix IPF 02 > > > > Hi everybody, > > Well I saw my pulmo-dude last week and the surgeon yesterday and my > diagnosis is not specifically one thing or another. I'm going to write > it all here and maybe someone else had a similar result. > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with > numerous fibroblastic foci and mild interstitial fibrosis. > > Biopsies show a cellular mixed inflammatory infiltrate of lymphocytes > and histiocytes in the alveolar septae. Scattered throughout the alveoli > are several small fibroblastic foci in the interstitium. There is mild > interstitial fibrosis thickening of the alveolae septae. No dense > honeycombing. Findings are consistant with a cellular fibrosing > interstitial pneumonitis. Differential diagnosis is a mixed NSIP pattern > and UIP. Presence of fibroblastic foci favors UIP but the dense > fibrosing associated with UIP is not observed in the samples. A similar > histologic picture may be observed in collagen vascular disease, > pneumoconoisis, and hypersensitivity pneumonitis. Suggest correlation > with clinical and radiologic findings.HUH? This is not how an episode of > HOUSE MD ends! Anyway I am being referred by my pulmo-dude to Columbia > Presbyterian Medical Center-NYC which has an interstitial lung disease > department to be evaluated. I am back at work and so happy to be out of > the house. My company is giving me a parking spot closest to the lobby > and I also got from Motor Vehicles a handicapped placard since I am on > O2 for exertion. - nne > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 Bruce- thank you so much for the information and it is comforting to know that my pulmo-dude is right in referring me to Columbia. That's what I LOVE about my pulmo-dude, he was born, raised and educated in New York ( as I was- we both have thick New York accents)and he went to med school and had residency at Columbia so he knows a great deal about the program. He was also totally honest with me that in 25 years of practice he hasn't had a case like mine so he wants me to be evaluated by the " best " . I hope I can keep him as my Jersey doc. From what I've read on this site it seems you do get to stay with your doc and he gets updated by the center. Again- thanks for your help- nne > > > > Hi everybody, > > Well I saw my pulmo-dude last week and the surgeon yesterday and my > diagnosis is not specifically one thing or another. I'm going to write > it all here and maybe someone else had a similar result. > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with > numerous fibroblastic foci and mild interstitial fibrosis. > > Biopsies show a cellular mixed inflammatory infiltrate of lymphocytes > and histiocytes in the alveolar septae. Scattered throughout the alveoli > are several small fibroblastic foci in the interstitium. There is mild > interstitial fibrosis thickening of the alveolae septae. No dense > honeycombing. Findings are consistant with a cellular fibrosing > interstitial pneumonitis. Differential diagnosis is a mixed NSIP pattern > and UIP. Presence of fibroblastic foci favors UIP but the dense > fibrosing associated with UIP is not observed in the samples. A similar > histologic picture may be observed in collagen vascular disease, > pneumoconoisis, and hypersensitivity pneumonitis. Suggest correlation > with clinical and radiologic findings.HUH? This is not how an episode of > HOUSE MD ends! Anyway I am being referred by my pulmo-dude to Columbia > Presbyterian Medical Center-NYC which has an interstitial lung disease > department to be evaluated. I am back at work and so happy to be out of > the house. My company is giving me a parking spot closest to the lobby > and I also got from Motor Vehicles a handicapped placard since I am on > O2 for exertion. - nne > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 nne the good thing is that there is no dense honeycombing -- maybe with all of those "itis" s, your disease will be responsive to treatment Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: results of VATS?????To: Breathe-Support Date: Wednesday, August 5, 2009, 2:57 PM nne,House and I have much the same sense of humor LOLSo much of what I have been through medically has been 'Idiopathic" that at times I want to beat my head against the wall...but then I smile and remember that they are just jealous because the voices are not talking to them ha ha haDyane Phoenix IPF 02 On Wed, Aug 5, 2009 at 11:28 AM, teddyspenguins <teddyspenguins@ yahoo.com> wrote: Dyanne,It's funny what you said about the meaning of idiopathetic. I'm a big HOUSE MD fan and I saw an old episode where he is sitting around with his team and they are giving him differential diagnoses for a patient's illness. One of the doctors said "Idiopathetic. .." (it wasn't PF) And House said "Idiopathetic - in Latin that means we idiots don't know what is causing it." How true! > > >> >> > Hi everybody,> > Well I saw my pulmo-dude last week and the surgeon yesterday and my> > diagnosis is not specifically one thing or another. I'm going to write it> > all here and maybe someone else had a similar result.> > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with> > numerous fibroblastic foci and mild interstitial fibrosis.> > Biopsies show a cellular mixed inflammatory infiltrate of lymphocytes and> > histiocytes in the alveolar septae. Scattered throughout the alveoli are> > several small fibroblastic foci in the interstitium. There is mild> > interstitial fibrosis thickening of the alveolae septae. No dense> > honeycombing. Findings are consistant with a cellular fibrosing interstitial> > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP.> > Presence of fibroblastic foci favors UIP but the dense fibrosing associated> > with UIP is not observed in the samples. A similar histologic picture may be> > observed in collagen vascular disease, pneumoconoisis, and hypersensitivity> > pneumonitis. Suggest correlation with clinical and radiologic findings.HUH?> > This is not how an episode of HOUSE MD ends! Anyway I am being referred by> > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which has an> > interstitial lung disease department to be evaluated. I am back at work and> > so happy to be out of the house. My company is giving me a parking spot> > closest to the lobby and I also got from Motor Vehicles a handicapped> > placard since I am on O2 for exertion. - nne> >> > > >> > > > -- > Dyane L. Billings> Senior Staff Accountant> Ball & McGraw PC> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 Joyce, That's what my pulmo-dude said- the " itis " and NSIP can respond to treatment. I'm still on prednisone 20mg and he said sometimes inflammation takes a while to respond to the meds. Who knows? I just can't believe how out of breath I am doing ANYTHING and yet it's not PF???? Can't wait to get O2 for exertion. My co-workers are asking me if they can have a " hit " of O2 from time to time if I'm not using it-LOL > > > > > > > > > > > > Hi everybody, > > > Well I saw my pulmo-dude last week and the surgeon yesterday and my > > > diagnosis is not specifically one thing or another. I'm going to write it > > > all here and maybe someone else had a similar result. > > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with > > > numerous fibroblastic foci and mild interstitial fibrosis. > > > Biopsies show a cellular mixed inflammatory infiltrate of lymphocytes and > > > histiocytes in the alveolar septae. Scattered throughout the alveoli are > > > several small fibroblastic foci in the interstitium. There is mild > > > interstitial fibrosis thickening of the alveolae septae. No dense > > > honeycombing. Findings are consistant with a cellular fibrosing interstitial > > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP. > > > Presence of fibroblastic foci favors UIP but the dense fibrosing associated > > > with UIP is not observed in the samples. A similar histologic picture may be > > > observed in collagen vascular disease, pneumoconoisis, and hypersensitivity > > > pneumonitis. Suggest correlation with clinical and radiologic findings.HUH? > > > This is not how an episode of HOUSE MD ends! Anyway I am being referred by > > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which has an > > > interstitial lung disease department to be evaluated. I am back at work and > > > so happy to be out of the house. My company is giving me a parking spot > > > closest to the lobby and I also got from Motor Vehicles a handicapped > > > placard since I am on O2 for exertion. - nne > > > > > > > > > > > > > > > > > > -- > > Dyane L. Billings > > Senior Staff Accountant > > Ball & McGraw PC > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 , You mean it's 2 years later and you still don't know? WOW! In a way that makes me feel better- at least I'm not alone with this mystery-I bet a doctor with nothing to do will come up with another term for this potpourri we have and he'll get all the glory and there still won't be a treatment for it-just a name! > > > > Hi everybody, > > Well I saw my pulmo-dude last week and the surgeon yesterday and my > diagnosis is not specifically one thing or another. I'm going to write > it all here and maybe someone else had a similar result. > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with > numerous fibroblastic foci and mild interstitial fibrosis. > > Biopsies show a cellular mixed inflammatory infiltrate of lymphocytes > and histiocytes in the alveolar septae. Scattered throughout the alveoli > are several small fibroblastic foci in the interstitium. There is mild > interstitial fibrosis thickening of the alveolae septae. No dense > honeycombing. Findings are consistant with a cellular fibrosing > interstitial pneumonitis. Differential diagnosis is a mixed NSIP pattern > and UIP. Presence of fibroblastic foci favors UIP but the dense > fibrosing associated with UIP is not observed in the samples. A similar > histologic picture may be observed in collagen vascular disease, > pneumoconoisis, and hypersensitivity pneumonitis. Suggest correlation > with clinical and radiologic findings.HUH? This is not how an episode of > HOUSE MD ends! Anyway I am being referred by my pulmo-dude to Columbia > Presbyterian Medical Center-NYC which has an interstitial lung disease > department to be evaluated. I am back at work and so happy to be out of > the house. My company is giving me a parking spot closest to the lobby > and I also got from Motor Vehicles a handicapped placard since I am on > O2 for exertion. - nne > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 nne, I am sorry for some (who want to know) that never get the answer as to the type of PF they have. The way I look at PF is PF...As far as I know NSIP is the only one that responds to prednisone. The Doctors can usually determine that without OLB. or VAT in most casesso I have never seen, read or heard enough to make me see the worthiness of the risk of surgery.. Your still gonna have PF.There is still NO treatment and the risks are VERY real. Infection is a real threat.. not worth it is my feeling. I don't understand the need to know some have and of course it is an individual choice. God Bless Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. , You mean it's 2 years later and you still don't know? WOW! In a way that makes me feel better- at least I'm not alone with this mystery-I bet a doctor with nothing to do will come up with another term for this potpourri we have and he'll get all the glory and there still won't be a treatment for it-just a name! > > > > Hi everybody, > > Well I saw my pulmo-dude last week and the surgeon yesterday and my > diagnosis is not specifically one thing or another. I'm going to write > it all here and maybe someone else had a similar result. > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with > numerous fibroblastic foci and mild interstitial fibrosis. > > Biopsies show a cellular mixed inflammatory infiltrate of lymphocytes > and histiocytes in the alveolar septae. Scattered throughout the alveoli > are several small fibroblastic foci in the interstitium. There is mild > interstitial fibrosis thickening of the alveolae septae. No dense > honeycombing. Findings are consistant with a cellular fibrosing > interstitial pneumonitis. Differential diagnosis is a mixed NSIP pattern > and UIP. Presence of fibroblastic foci favors UIP but the dense > fibrosing associated with UIP is not observed in the samples. A similar > histologic picture may be observed in collagen vascular disease, > pneumoconoisis, and hypersensitivity pneumonitis. Suggest correlation > with clinical and radiologic findings.HUH? This is not how an episode of > HOUSE MD ends! Anyway I am being referred by my pulmo-dude to Columbia > Presbyterian Medical Center-NYC which has an interstitial lung disease > department to be evaluated. I am back at work and so happy to be out of > the house. My company is giving me a parking spot closest to the lobby > and I also got from Motor Vehicles a handicapped placard since I am on > O2 for exertion. - nne > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 nne, Even if you " just have NSIP "it is still fibrosis!!! And it's considered a part of the PF family of diseases. As you can see at the bottom of this post , I have NSIP and am on O2 24/7 and Prednisone etc. The name many be different, the response to steroids may be different, but the fibrosis is permanent. Beth and I have fibriotic NSIP. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower teddyspenguins wrote: Joyce, That's what my pulmo-dude said- the "itis" and NSIP can respond to treatment. I'm still on prednisone 20mg and he said sometimes inflammation takes a while to respond to the meds. Who knows? I just can't believe how out of breath I am doing ANYTHING and yet it's not PF???? Can't wait to get O2 for exertion. My co-workers are asking me if they can have a "hit" of O2 from time to time if I'm not using it-LOL > > > > > > > > > > > > Hi everybody, > > > Well I saw my pulmo-dude last week and the surgeon yesterday and my > > > diagnosis is not specifically one thing or another. I'm going to write it > > > all here and maybe someone else had a similar result. > > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with > > > numerous fibroblastic foci and mild interstitial fibrosis. > > > Biopsies show a cellular mixed inflammatory infiltrate of lymphocytes and > > > histiocytes in the alveolar septae. Scattered throughout the alveoli are > > > several small fibroblastic foci in the interstitium. There is mild > > > interstitial fibrosis thickening of the alveolae septae. No dense > > > honeycombing. Findings are consistant with a cellular fibrosing interstitial > > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP. > > > Presence of fibroblastic foci favors UIP but the dense fibrosing associated > > > with UIP is not observed in the samples. A similar histologic picture may be > > > observed in collagen vascular disease, pneumoconoisis, and hypersensitivity > > > pneumonitis. Suggest correlation with clinical and radiologic findings.HUH? > > > This is not how an episode of HOUSE MD ends! Anyway I am being referred by > > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which has an > > > interstitial lung disease department to be evaluated. I am back at work and > > > so happy to be out of the house. My company is giving me a parking spot > > > closest to the lobby and I also got from Motor Vehicles a handicapped > > > placard since I am on O2 for exertion. - nne > > > > > > > > > > > > > > > > > > -- > > Dyane L. Billings > > Senior Staff Accountant > > Ball & McGraw PC > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 Yep that's EXACTLY right....I'm a 'Work in Progress'..... > > >> > > Hi everybody,> > > Well I saw my pulmo-dude last week and the surgeon yesterday and my> > diagnosis is not specifically one thing or another. I'm going to write> > it all here and maybe someone else had a similar result.> > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with> > numerous fibroblastic foci and mild interstitial fibrosis.> > > Biopsies show a cellular mixed inflammatory infiltrate of lymphocytes> > and histiocytes in the alveolar septae. Scattered throughout the alveoli> > are several small fibroblastic foci in the interstitium. There is mild> > interstitial fibrosis thickening of the alveolae septae. No dense> > honeycombing. Findings are consistant with a cellular fibrosing> > interstitial pneumonitis. Differential diagnosis is a mixed NSIP pattern> > and UIP. Presence of fibroblastic foci favors UIP but the dense> > fibrosing associated with UIP is not observed in the samples. A similar> > histologic picture may be observed in collagen vascular disease,> > pneumoconoisis, and hypersensitivity pneumonitis. Suggest correlation> > with clinical and radiologic findings.HUH? This is not how an episode of> > HOUSE MD ends! Anyway I am being referred by my pulmo-dude to Columbia> > Presbyterian Medical Center-NYC which has an interstitial lung disease> > department to be evaluated. I am back at work and so happy to be out of> > the house. My company is giving me a parking spot closest to the lobby> > and I also got from Motor Vehicles a handicapped placard since I am on> > O2 for exertion. - nne> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2009 Report Share Posted August 7, 2009 Hi , Yeah- you're right I know having NSIP is not an illness where you pop a few antibiotics and get " cured " . My pulmo-dude is reducing prednisone since he doesn't think it's doing anything, which is why he is referring me to Columbia Presbyterian for a transplant evaluation. I am his first patient with this mish-mosh of a diagnosis so he doesn't want to just keep trying this or that. He said the best you can hope for with a medicine working is that it would slow the progression of the disease, I would still be at the same place I am now- a transplant is the only chance to be normal again. Now I have another question, ever since this nightmare started mid-May of this year, I have been experiencing spasms in my lungs- if my mouth is open, it sounds like a hiccup which is so embarassing but it definitely isn't coming from my stomach. Told drs. about this and they said NOTHING, mentioned it to anesthesiologist at the VATS and I called it a broncho-spasm and he said it wasn't-but he didn't say what is was. Anyone else experience this? Yesterday was really bad and all I was doing was sitting, not talking. It happens whenever and wherever. > > > > > > > > > > > > > > > > > > > > > > Hi everybody, > > > > > Well I saw my pulmo-dude last week and the surgeon yesterday and my > > > > > diagnosis is not specifically one thing or another. I'm going to > > write it > > > > > all here and maybe someone else had a similar result. > > > > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with > > > > > numerous fibroblastic foci and mild interstitial fibrosis. > > > > > Biopsies show a cellular mixed inflammatory infiltrate of > > lymphocytes and > > > > > histiocytes in the alveolar septae. Scattered throughout the > > alveoli are > > > > > several small fibroblastic foci in the interstitium. There is mild > > > > > interstitial fibrosis thickening of the alveolae septae. No dense > > > > > honeycombing. Findings are consistant with a cellular fibrosing > > interstitial > > > > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP. > > > > > Presence of fibroblastic foci favors UIP but the dense fibrosing > > associated > > > > > with UIP is not observed in the samples. A similar histologic > > picture may be > > > > > observed in collagen vascular disease, pneumoconoisis, and > > hypersensitivity > > > > > pneumonitis. Suggest correlation with clinical and radiologic > > findings.HUH? > > > > > This is not how an episode of HOUSE MD ends! Anyway I am being > > referred by > > > > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which > > has an > > > > > interstitial lung disease department to be evaluated. I am back > > at work and > > > > > so happy to be out of the house. My company is giving me a > > parking spot > > > > > closest to the lobby and I also got from Motor Vehicles a > > handicapped > > > > > placard since I am on O2 for exertion. - nne > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- > > > > Dyane L. Billings > > > > Senior Staff Accountant > > > > Ball & McGraw PC > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2009 Report Share Posted August 7, 2009 Peggy that's where i agree with you my pulmonary even coauthored a paper about the risks of biopsy the more i read about the problems people have with the biopsies, the happier i am that i didn't have one we are learning clinically and through radiology and other tests and trial and error about my disease a couple of months ago, she changed the name, probably for billing pursposes, from ipf to idiopathic fibrosing alveolitis, because it is responsive to meds look uo the new diagnosis on line, and it means the same thing Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: results of VATS?????To: Breathe-Support Date: Thursday, August 6, 2009, 4:01 PM nne, I am sorry for some (who want to know) that never get the answer as to the type of PF they have. The way I look at PF is PF... As far as I know NSIP is the only one that responds to prednisone. The Doctors can usually determine that without OLB. or VAT in most cases so I have never seen, read or heard enough to make me see the worthiness of the risk of surgery.. Your still gonna have PF. There is still NO treatment and the risks are VERY real. Infection is a real threat.. not worth it is my feeling. I don't understand the need to know some have and of course it is an individual choice. God Bless Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. ,You mean it's 2 years later and you still don't know? WOW! In a way that makes me feel better- at least I'm not alone with this mystery-I bet a doctor with nothing to do will come up with another term for this potpourri we have and he'll get all the glory and there still won't be a treatment for it-just a name!> >> > Hi everybody,> > Well I saw my pulmo-dude last week and the surgeon yesterday and my> diagnosis is not specifically one thing or another. I'm going to write> it all here and maybe someone else had a similar result.> > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with> numerous fibroblastic foci and mild interstitial fibrosis.> > Biopsies show a cellular mixed inflammatory infiltrate of lymphocytes> and histiocytes in the alveolar septae. Scattered throughout the alveoli> are several small fibroblastic foci in the interstitium. There is mild> interstitial fibrosis thickening of the alveolae septae. No dense> honeycombing. Findings are consistant with a cellular fibrosing> interstitial pneumonitis. Differential diagnosis is a mixed NSIP pattern> and UIP. Presence of fibroblastic foci favors UIP but the dense> fibrosing associated with UIP is not observed in the samples. A similar> histologic picture may be observed in collagen vascular disease,> pneumoconoisis, and hypersensitivity pneumonitis. Suggest correlation> with clinical and radiologic findings.HUH? This is not how an episode of> HOUSE MD ends! Anyway I am being referred by my pulmo-dude to Columbia> Presbyterian Medical Center-NYC which has an interstitial lung disease> department to be evaluated. I am back at work and so happy to be out of> the house. My company is giving me a parking spot closest to the lobby> and I also got from Motor Vehicles a handicapped placard since I am on> O2 for exertion. - nne> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2009 Report Share Posted August 7, 2009 teddy? (not sure what your real name is) I have the spams you are speaking of EVERY blasted day and yes it can be embarassing. It feels like your lungs all of a sudden suck in air involuntarily. I elxplained it to my doctor by telling him how sudden and involuntary it is. He wasn't sure what to call it but said that many of his PF patients have them. I also get muscle spasms/cramps in the muscles around my lungs that are so sudden and strong. It has stopped me in my tracks and left me leaning agaist a wall or holding on to funiture to keep myself up right. Best Wishes, 34 FL IPF dx 1/06 > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi everybody, > > > > > > Well I saw my pulmo-dude last week and the surgeon yesterday and my > > > > > > diagnosis is not specifically one thing or another. I'm going to > > > write it > > > > > > all here and maybe someone else had a similar result. > > > > > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with > > > > > > numerous fibroblastic foci and mild interstitial fibrosis. > > > > > > Biopsies show a cellular mixed inflammatory infiltrate of > > > lymphocytes and > > > > > > histiocytes in the alveolar septae. Scattered throughout the > > > alveoli are > > > > > > several small fibroblastic foci in the interstitium. There is mild > > > > > > interstitial fibrosis thickening of the alveolae septae. No dense > > > > > > honeycombing. Findings are consistant with a cellular fibrosing > > > interstitial > > > > > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP. > > > > > > Presence of fibroblastic foci favors UIP but the dense fibrosing > > > associated > > > > > > with UIP is not observed in the samples. A similar histologic > > > picture may be > > > > > > observed in collagen vascular disease, pneumoconoisis, and > > > hypersensitivity > > > > > > pneumonitis. Suggest correlation with clinical and radiologic > > > findings.HUH? > > > > > > This is not how an episode of HOUSE MD ends! Anyway I am being > > > referred by > > > > > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which > > > has an > > > > > > interstitial lung disease department to be evaluated. I am back > > > at work and > > > > > > so happy to be out of the house. My company is giving me a > > > parking spot > > > > > > closest to the lobby and I also got from Motor Vehicles a > > > handicapped > > > > > > placard since I am on O2 for exertion. - nne > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- > > > > > Dyane L. Billings > > > > > Senior Staff Accountant > > > > > Ball & McGraw PC > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2009 Report Share Posted August 7, 2009 I do the same thing at least once daily. B Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 To: Breathe-Support Sent: Friday, August 7, 2009 11:04:21 PMSubject: Re: results of VATS????? teddy? (not sure what your real name is)I have the spams you are speaking of EVERY blasted day and yes it can be embarassing. It feels like your lungs all of a sudden suck in air involuntarily. I elxplained it to my doctor by telling him how sudden and involuntary it is. He wasn't sure what to call it but said that many of his PF patients have them. I also get muscle spasms/cramps in the muscles around my lungs that are so sudden and strong. It has stopped me in my tracks and left me leaning agaist a wall or holding on to funiture to keep myself up right. Best Wishes, 34 FL IPF dx 1/06> > > >> > > > >> > > > > >> > > > > >> > > > > > Hi everybody,> > > > > > Well I saw my pulmo-dude last week and the surgeon yesterday and my> > > > > > diagnosis is not specifically one thing or another. I'm going to > > > write it> > > > > > all here and maybe someone else had a similar result.> > > > > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with> > > > > > numerous fibroblastic foci and mild interstitial fibrosis.> > > > > > Biopsies show a cellular mixed inflammatory infiltrate of > > > lymphocytes and> > > > > > histiocytes in the alveolar septae. Scattered throughout the > > > alveoli are> > > > > > several small fibroblastic foci in the interstitium. There is mild> > > > > > interstitial fibrosis thickening of the alveolae septae. No dense> > > > > > honeycombing. Findings are consistant with a cellular fibrosing > > > interstitial> > > > > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP.> > > > > > Presence of fibroblastic foci favors UIP but the dense fibrosing > > > associated> > > > > > with UIP is not observed in the samples. A similar histologic > > > picture may be> > > > > > observed in collagen vascular disease, pneumoconoisis, and > > > hypersensitivity> > > > > > pneumonitis. Suggest correlation with clinical and radiologic > > > findings.HUH?> > > > > > This is not how an episode of HOUSE MD ends! Anyway I am being > > > referred by> > > > > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which > > > has an> > > > > > interstitial lung disease department to be evaluated. I am back > > > at work and> > > > > > so happy to be out of the house. My company is giving me a > > > parking spot> > > > > > closest to the lobby and I also got from Motor Vehicles a > > > handicapped> > > > > > placard since I am on O2 for exertion. - nne> > > > > >> > > > > >> > > > > >> > > > >> > > > >> > > > >> > > >> > > > > --> > > > > Dyane L. Billings> > > > > Senior Staff Accountant> > > > > Ball & McGraw PC> > > > >> > > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2009 Report Share Posted August 7, 2009 I too feel I have NSIP, since I have responde well to Prednisone and it is now 13 yrs since I have been diagnosed.I have long spells of ''stable'' phases. I have never felt the need to confirm this. Geeta -- In Breathe-Support , Zion wrote: > > *nne*, Even if you " just have NSIP " it is still fibrosis!!! > And it's considered a part of the PF family of diseases. > As you can see at the bottom of this post , I have NSIP > and am on O2 24/7 and Prednisone etc. The name many be different, > the response to steroids may be different, but the fibrosis is permanent. > Beth and I have fibriotic NSIP. > > > Z 65, fibriotic NSIP/05/PA > > > And " mild " PH/10/07 and Reynaud's too!! > > No, NSIP was not self-inflicted...I never smoked! > > Potter, reader,carousel lover and MomMom to Darah and Sara > > " *I'm gonna be iron like a lion in Zion " Bob Marley* > > *Vinca Minor-periwinkle is my flower* > > > > > > > > > > teddyspenguins wrote: > > > > > > Joyce, > > That's what my pulmo-dude said- the " itis " and NSIP can respond to > > treatment. I'm still on prednisone 20mg and he said sometimes > > inflammation takes a while to respond to the meds. Who knows? I just > > can't believe how out of breath I am doing ANYTHING and yet it's not > > PF???? Can't wait to get O2 for exertion. My co-workers are asking me > > if they can have a " hit " of O2 from time to time if I'm not using it-LOL > > > > > > > > > > > > > > > > > > > > > > > > > > Hi everybody, > > > > > Well I saw my pulmo-dude last week and the surgeon yesterday and my > > > > > diagnosis is not specifically one thing or another. I'm going to > > write it > > > > > all here and maybe someone else had a similar result. > > > > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with > > > > > numerous fibroblastic foci and mild interstitial fibrosis. > > > > > Biopsies show a cellular mixed inflammatory infiltrate of > > lymphocytes and > > > > > histiocytes in the alveolar septae. Scattered throughout the > > alveoli are > > > > > several small fibroblastic foci in the interstitium. There is mild > > > > > interstitial fibrosis thickening of the alveolae septae. No dense > > > > > honeycombing. Findings are consistant with a cellular fibrosing > > interstitial > > > > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP. > > > > > Presence of fibroblastic foci favors UIP but the dense fibrosing > > associated > > > > > with UIP is not observed in the samples. A similar histologic > > picture may be > > > > > observed in collagen vascular disease, pneumoconoisis, and > > hypersensitivity > > > > > pneumonitis. Suggest correlation with clinical and radiologic > > findings.HUH? > > > > > This is not how an episode of HOUSE MD ends! Anyway I am being > > referred by > > > > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which > > has an > > > > > interstitial lung disease department to be evaluated. I am back > > at work and > > > > > so happy to be out of the house. My company is giving me a > > parking spot > > > > > closest to the lobby and I also got from Motor Vehicles a > > handicapped > > > > > placard since I am on O2 for exertion. - nne > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- > > > > Dyane L. Billings > > > > Senior Staff Accountant > > > > Ball & McGraw PC > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2009 Report Share Posted August 9, 2009 nne, I think I know precisely what you're talking about....it sounds sort of like a hiccup...feels like a short involuntary miniature gasp....it's definitely respiratory not GI. I've never been able to get a doctor to understand what I was talking about. Since it never happens when I'm in their presence. It happens to me much much less now than it did before I was on oxygen. Only occasionally these days. Once every few days but always at the most inopportune moments....like standing in line at the grocery store....or in church...lol I'm glad you're going to be going to Columbia in NY. I was treated there before I moved to North Carolina and was very happy with the doctors and staff. I didn't realize you were going for transplant evaluation this quickly. Just remember that while transplant does offer the chance to be able to breathe without the oxygen again it comes with it's own set of complications and problems. Take in all the information and make the right decision for you! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Friday, August 7, 2009 4:17:22 PMSubject: Re: results of VATS????? Hi ,Yeah- you're right I know having NSIP is not an illness where you pop a few antibiotics and get "cured". My pulmo-dude is reducing prednisone since he doesn't think it's doing anything, which is why he is referring me to Columbia Presbyterian for a transplant evaluation. I am his first patient with this mish-mosh of a diagnosis so he doesn't want to just keep trying this or that. He said the best you can hope for with a medicine working is that it would slow the progression of the disease, I would still be at the same place I am now- a transplant is the only chance to be normal again. Now I have another question, ever since this nightmare started mid-May of this year, I have been experiencing spasms in my lungs- if my mouth is open, it sounds like a hiccup which is so embarassing but it definitely isn't coming from my stomach. Told drs. about this and they said NOTHING, mentioned it to anesthesiologist at the VATS and I called it a broncho-spasm and he said it wasn't-but he didn't say what is was. Anyone else experience this? Yesterday was really bad and all I was doing was sitting, not talking. It happens whenever and wherever.> > >> > > >> > > > >> > > > >> > > > > Hi everybody,> > > > > Well I saw my pulmo-dude last week and the surgeon yesterday and my> > > > > diagnosis is not specifically one thing or another. I'm going to > > write it> > > > > all here and maybe someone else had a similar result.> > > > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with> > > > > numerous fibroblastic foci and mild interstitial fibrosis.> > > > > Biopsies show a cellular mixed inflammatory infiltrate of > > lymphocytes and> > > > > histiocytes in the alveolar septae. Scattered throughout the > > alveoli are> > > > > several small fibroblastic foci in the interstitium. There is mild> > > > > interstitial fibrosis thickening of the alveolae septae. No dense> > > > > honeycombing. Findings are consistant with a cellular fibrosing > > interstitial> > > > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP.> > > > > Presence of fibroblastic foci favors UIP but the dense fibrosing > > associated> > > > > with UIP is not observed in the samples. A similar histologic > > picture may be> > > > > observed in collagen vascular disease, pneumoconoisis, and > > hypersensitivity> > > > > pneumonitis. Suggest correlation with clinical and radiologic > > findings.HUH?> > > > > This is not how an episode of HOUSE MD ends! Anyway I am being > > referred by> > > > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which > > has an> > > > > interstitial lung disease department to be evaluated. I am back > > at work and> > > > > so happy to be out of the house. My company is giving me a > > parking spot> > > > > closest to the lobby and I also got from Motor Vehicles a > > handicapped> > > > > placard since I am on O2 for exertion. - nne> > > > >> > > > >> > > > >> > > >> > > >> > > >> > >> > > > --> > > > Dyane L. Billings> > > > Senior Staff Accountant> > > > Ball & McGraw PC> > > >> > >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2009 Report Share Posted August 9, 2009 welcome back mary beth transplant evals at Penn are done as soon as possible i was dx in march, referred to the transplant doc and the eval was july one of the things they look at is whether or not you would be a candidate down the road -- just in case when the time comes.... i have learned that for some people the change comes quite suddenly, and the bulk of the testing has been done at the time my lungs were too healthy, but i would be a potential candidate if necessary i used to say that i was "on the list to be listed" i'm sure there are some people who are ruled out at the time for various reasons, the catch is that your body has to be healthy enough to go thru the operation and recovery, etc, while at the same time your lungs need to bad enough to need replacement then as the transplant doc says, you are trading the disease of pulmonary fibrosis for the "disease of transplant" and everything involved with post transplant issuses since that time we have learned alot about that on this board, with rejection and other kinds of issues most of the post transplant people that i have met, said that they are glad they had the transplants, the longest lung recipient that i met is about 15 years, then i met someone out about 10 years, i have spoken with someone a couple of times who had his 9 years ago there is a lady in the lung tx support group who had a heart/lung tx 6 years ago, she goes to gym 5 times a week yes, i know about the down side of transplant, but i also have to look at the positive side vs the alternative Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: results of VATS?????To: Breathe-Support Date: Sunday, August 9, 2009, 8:28 AM nne, I think I know precisely what you're talking about....it sounds sort of like a hiccup...feels like a short involuntary miniature gasp....it's definitely respiratory not GI. I've never been able to get a doctor to understand what I was talking about. Since it never happens when I'm in their presence. It happens to me much much less now than it did before I was on oxygen. Only occasionally these days. Once every few days but always at the most inopportune moments....like standing in line at the grocery store....or in church...lol I'm glad you're going to be going to Columbia in NY. I was treated there before I moved to North Carolina and was very happy with the doctors and staff. I didn't realize you were going for transplant evaluation this quickly. Just remember that while transplant does offer the chance to be able to breathe without the oxygen again it comes with it's own set of complications and problems. Take in all the information and make the right decision for you! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: teddyspenguins <teddyspenguins@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Friday, August 7, 2009 4:17:22 PMSubject: Re: results of VATS????? Hi ,Yeah- you're right I know having NSIP is not an illness where you pop a few antibiotics and get "cured". My pulmo-dude is reducing prednisone since he doesn't think it's doing anything, which is why he is referring me to Columbia Presbyterian for a transplant evaluation. I am his first patient with this mish-mosh of a diagnosis so he doesn't want to just keep trying this or that. He said the best you can hope for with a medicine working is that it would slow the progression of the disease, I would still be at the same place I am now- a transplant is the only chance to be normal again. Now I have another question, ever since this nightmare started mid-May of this year, I have been experiencing spasms in my lungs- if my mouth is open, it sounds like a hiccup which is so embarassing but it definitely isn't coming from my stomach. Told drs. about this and they said NOTHING, mentioned it to anesthesiologist at the VATS and I called it a broncho-spasm and he said it wasn't-but he didn't say what is was. Anyone else experience this? Yesterday was really bad and all I was doing was sitting, not talking. It happens whenever and wherever.> > >> > > >> > > > >> > > > >> > > > > Hi everybody,> > > > > Well I saw my pulmo-dude last week and the surgeon yesterday and my> > > > > diagnosis is not specifically one thing or another. I'm going to > > write it> > > > > all here and maybe someone else had a similar result.> > > > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with> > > > > numerous fibroblastic foci and mild interstitial fibrosis.> > > > > Biopsies show a cellular mixed inflammatory infiltrate of > > lymphocytes and> > > > > histiocytes in the alveolar septae. Scattered throughout the > > alveoli are> > > > > several small fibroblastic foci in the interstitium. There is mild> > > > > interstitial fibrosis thickening of the alveolae septae. No dense> > > > > honeycombing. Findings are consistant with a cellular fibrosing > > interstitial> > > > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP.> > > > > Presence of fibroblastic foci favors UIP but the dense fibrosing > > associated> > > > > with UIP is not observed in the samples. A similar histologic > > picture may be> > > > > observed in collagen vascular disease, pneumoconoisis, and > > hypersensitivity> > > > > pneumonitis. Suggest correlation with clinical and radiologic > > findings.HUH?> > > > > This is not how an episode of HOUSE MD ends! Anyway I am being > > referred by> > > > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which > > has an> > > > > interstitial lung disease department to be evaluated. I am back > > at work and> > > > > so happy to be out of the house. My company is giving me a > > parking spot> > > > > closest to the lobby and I also got from Motor Vehicles a > > handicapped> > > > > placard since I am on O2 for exertion. - nne> > > > >> > > > >> > > > >> > > >> > > >> > > >> > >> > > > --> > > > Dyane L. Billings> > > > Senior Staff Accountant> > > > Ball & McGraw PC> > > >> > >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Beth, First of all, welcome back- it sounds like your vacation was perfect- except for the oxygen tanks! Now about transplant issue- I really think Columbia is just going to evaluate me and then I guess if I qualify they may talk to me about transplant. My pulmo-dude brought the subject up because that really is the only way to achieve normalcy. The drugs, if they work at all, just slow the progression. I guess with my mish-mosh of a diagnosis, he feels a drug option may not be for me. Even the surgeon for VATS was not encouraging about a drug option. In his words, " the drugs wreak havoc on your body. " At the pre-VATS appointment he said my pfts were " bad " and he couldn't believe I wasn't on O2 already. Who knows- I'll just wait and see what happens at Columbia. I have a question for you about portable O2. I have a unit about 12 lbs. that was delivered on Friday (not IRON) which I filled while the delivery guy was there, but when I grabbed it this morning there was no O2 in it. My plan had been to fill it night before I was going to use it-I know I must have waited too long since I didn't use it Saturday or Sunday. But if I fill it tonight and then use it when I go out for my lunch hour tomorrow, will the O2 still be there? I have an appointment to get Helios and meet with Respiratory Tech on Wednesday- not sure what Helios is though, but I guess I'll find out. SO many new things to learn!- nne > >> > > > >> > > > > >> > > > > > >> > > > > > >> > > > > Hi everybody, > >> > > > > Well I saw my pulmo-dude last week and the surgeon yesterday and my > >> > > > > diagnosis is not specifically one thing or another. I'm going to > >> > write it > >> > > > > all here and maybe someone else had a similar result. > >> > > > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with > >> > > > > numerous fibroblastic foci and mild interstitial fibrosis. > >> > > > > Biopsies show a cellular mixed inflammatory infiltrate of > >> > lymphocytes and > >> > > > > histiocytes in the alveolar septae. Scattered throughout the > >> > alveoli are > >> > > > > several small fibroblastic foci in the interstitium. There is mild > >> > > > > interstitial fibrosis thickening of the alveolae septae. No dense > >> > > > > honeycombing. Findings are consistant with a cellular fibrosing > >> > interstitial > >> > > > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP. > >> > > > > Presence of fibroblastic foci favors UIP but the dense fibrosing > >> > associated > >> > > > > with UIP is not observed in the samples. A similar histologic > >> > picture may be > >> > > > > observed in collagen vascular disease, pneumoconoisis, and > >> > hypersensitivity > >> > > > > pneumonitis. Suggest correlation with clinical and radiologic > >> > findings.HUH? > >> > > > > This is not how an episode of HOUSE MD ends! Anyway I am being > >> > referred by > >> > > > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which > >> > has an > >> > > > > interstitial lung disease department to be evaluated. I am back > >> > at work and > >> > > > > so happy to be out of the house. My company is giving me a > >> > parking spot > >> > > > > closest to the lobby and I also got from Motor Vehicles a > >> > handicapped > >> > > > > placard since I am on O2 for exertion. - nne > >> > > > > > >> > > > > > >> > > > > > >> > > > > >> > > > > >> > > > > >> > > > >> > > > -- > >> > > > Dyane L. Billings > >> > > > Senior Staff Accountant > >> > > > Ball & McGraw PC > >> > > > > >> > > > >> > > >> > > >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 nne, It sounds like you already have a Helios unit or some type of liquid device. If you filled it on Friday, I would not expect for there to be much, if anything left in it on Monday morning. In my limited experience with liquid O2 you need to fill the device within a few hours of when you are going to use it. There is evaporation and leakage that takes place and after a day or so the unit, if unused will be empty. Again in my limited experience with liquid, it's best to fill your device within a couple of hours of having to use it. I use compressed O2 in tanks, not liquid. It's what I've been on pretty much the whole time since my diagnosis over 3 years ago. I tried liquid very briefly a year or so ago and decided it wasn't for me. The problem of leakage and evaporation was one of the drawbacks that drove me back to tanks. It's all about figuring out what will work best for you and your own lifestyle. I wish you the very best with your evaluation. Be assured that the folks at Columbia are very good at what they do. I was very happy with the treatment I received there. Keep us posted! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, August 10, 2009 12:40:39 PMSubject: Re: results of VATS????? Beth,First of all, welcome back- it sounds like your vacation was perfect- except for the oxygen tanks! Now about transplant issue- I really think Columbia is just going to evaluate me and then I guess if I qualify they may talk to me about transplant. My pulmo-dude brought the subject up because that really is the only way to achieve normalcy. The drugs, if they work at all, just slow the progression. I guess with my mish-mosh of a diagnosis, he feels a drug option may not be for me. Even the surgeon for VATS was not encouraging about a drug option. In his words, "the drugs wreak havoc on your body." At the pre-VATS appointment he said my pfts were "bad" and he couldn't believe I wasn't on O2 already. Who knows- I'll just wait and see what happens at Columbia.I have a question for you about portable O2. I have a unit about 12 lbs. that was delivered on Friday (not IRON) which I filled while the delivery guy was there, but when I grabbed it this morning there was no O2 in it. My plan had been to fill it night before I was going to use it-I know I must have waited too long since I didn't use it Saturday or Sunday. But if I fill it tonight and then use it when I go out for my lunch hour tomorrow, will the O2 still be there? I have an appointment to get Helios and meet with Respiratory Tech on Wednesday- not sure what Helios is though, but I guess I'll find out. SO many new things to learn!- nne > >> > >> >> > > >> >> > > > >> >> > > > >> >> > > > > Hi everybody,> >> > > > > Well I saw my pulmo-dude last week and the surgeon yesterday and my> >> > > > > diagnosis is not specifically one thing or another. I'm going to > >> > write it> >> > > > > all here and maybe someone else had a similar result.> >> > > > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with> >> > > > > numerous fibroblastic foci and mild interstitial fibrosis.> >> > > > > Biopsies show a cellular mixed inflammatory infiltrate of > >> > lymphocytes and> >> > > > > histiocytes in the alveolar septae. Scattered throughout the > >> > alveoli are> >> > > > > several small fibroblastic foci in the interstitium. There is mild> >> > > > > interstitial fibrosis thickening of the alveolae septae. No dense> >> > > > > honeycombing. Findings are consistant with a cellular fibrosing > >> > interstitial> >> > > > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP.> >> > > > > Presence of fibroblastic foci favors UIP but the dense fibrosing > >> > associated> >> > > > > with UIP is not observed in the samples. A similar histologic > >> > picture may be> >> > > > > observed in collagen vascular disease, pneumoconoisis, and > >> > hypersensitivity> >> > > > > pneumonitis. Suggest correlation with clinical and radiologic > >> > findings.HUH?> >> > > > > This is not how an episode of HOUSE MD ends! Anyway I am being > >> > referred by> >> > > > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which > >> > has an> >> > > > > interstitial lung disease department to be evaluated. I am back > >> > at work and> >> > > > > so happy to be out of the house. My company is giving me a > >> > parking spot> >> > > > > closest to the lobby and I also got from Motor Vehicles a > >> > handicapped> >> > > > > placard since I am on O2 for exertion. - nne> >> > > > >> >> > > > >> >> > > > >> >> > > >> >> > > >> >> > > >> >> > >> >> > > > --> >> > > > Dyane L. Billings> >> > > > Senior Staff Accountant> >> > > > Ball & McGraw PC> >> > > >> >> > >> >> >> >> >> >>> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Beth, Thanks for your information, the deivery guy said it was liquid but I was so tired when he got to my house (10PM) I didn't know what he was talking about. But he said when I go for this appointment on Wed, they would have a tank there that I could use to fill up the Helios they were giving me- I MUST have missed something as he was talking-LOL. Also, thanks for clearing up the " lung hiccups " mystery. It happens less often on oxygen but I still experience it on O2. We need to come up with a name for it- it has also NEVER happened at the drs. office for me. > > >> > > > > >> > > > > > >> > > > > > > >> > > > > > > >> > > > > Hi everybody, > > >> > > > > Well I saw my pulmo-dude last week and the surgeon yesterday and my > > >> > > > > diagnosis is not specifically one thing or another. I'm going to > > >> > write it > > >> > > > > all here and maybe someone else had a similar result. > > >> > > > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with > > >> > > > > numerous fibroblastic foci and mild interstitial fibrosis. > > >> > > > > Biopsies show a cellular mixed inflammatory infiltrate of > > >> > lymphocytes and > > >> > > > > histiocytes in the alveolar septae. Scattered throughout the > > >> > alveoli are > > >> > > > > several small fibroblastic foci in the interstitium. There is mild > > >> > > > > interstitial fibrosis thickening of the alveolae septae. No dense > > >> > > > > honeycombing. Findings are consistant with a cellular fibrosing > > >> > interstitial > > >> > > > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP. > > >> > > > > Presence of fibroblastic foci favors UIP but the dense fibrosing > > >> > associated > > >> > > > > with UIP is not observed in the samples. A similar histologic > > >> > picture may be > > >> > > > > observed in collagen vascular disease, pneumoconoisis, and > > >> > hypersensitivity > > >> > > > > pneumonitis. Suggest correlation with clinical and radiologic > > >> > findings.HUH? > > >> > > > > This is not how an episode of HOUSE MD ends! Anyway I am being > > >> > referred by > > >> > > > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which > > >> > has an > > >> > > > > interstitial lung disease department to be evaluated. I am back > > >> > at work and > > >> > > > > so happy to be out of the house. My company is giving me a > > >> > parking spot > > >> > > > > closest to the lobby and I also got from Motor Vehicles a > > >> > handicapped > > >> > > > > placard since I am on O2 for exertion. - nne > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > >> > > > -- > > >> > > > Dyane L. Billings > > >> > > > Senior Staff Accountant > > >> > > > Ball & McGraw PC > > >> > > > > > >> > > > > >> > > > >> > > > >> > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Hi Beth, I notice that you were treated at Columbia. Did you live in New York before Durham? Did you move to go to Duke? I travel to Duke because it seems the best available within reasonable travel distance. It is a seven hour drive or a one hour plane ride and I can usually get a ticket between $98-120. Emory is in Atlanta but they did not have specialists in ILD when I was diagnosed in 2005 and now I just can't imagine not going to Duke. They are talking about scheduling a transplant evaluation in the near future at Duke. Did you go through the evaluation at Duke? New York was my home until we moved to Atlanta in 1992. Actually I still feel like NY is home and I live in Atlanta. Moving and relocating to another state at 50 did not work well for me at all. Dorothy Reinecke-Fayetteville, GA VATS 7/05-UIP 7/05 Live Simply, Love Generously, Care Deeply, Speak Kindly. Leave the rest to God. From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of BethSent: Monday, August 10, 2009 1:59 PMTo: Breathe-Support Subject: Re: Re: results of VATS????? nne, It sounds like you already have a Helios unit or some type of liquid device. If you filled it on Friday, I would not expect for there to be much, if anything left in it on Monday morning. In my limited experience with liquid O2 you need to fill the device within a few hours of when you are going to use it. There is evaporation and leakage that takes place and after a day or so the unit, if unused will be empty. Again in my limited experience with liquid, it's best to fill your device within a couple of hours of having to use it. I use compressed O2 in tanks, not liquid. It's what I've been on pretty much the whole time since my diagnosis over 3 years ago. I tried liquid very briefly a year or so ago and decided it wasn't for me. The problem of leakage and evaporation was one of the drawbacks that drove me back to tanks. It's all about figuring out what will work best for you and your own lifestyle. I wish you the very best with your evaluation. Be assured that the folks at Columbia are very good at what they do. I was very happy with the treatment I received there. Keep us posted! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: teddyspenguins <teddyspenguins (AT) yahoo (DOT) com>To: Breathe-Support Sent: Monday, August 10, 2009 12:40:39 PMSubject: Re: results of VATS????? Beth,First of all, welcome back- it sounds like your vacation was perfect- except for the oxygen tanks! Now about transplant issue- I really think Columbia is just going to evaluate me and then I guess if I qualify they may talk to me about transplant. My pulmo-dude brought the subject up because that really is the only way to achieve normalcy. The drugs, if they work at all, just slow the progression. I guess with my mish-mosh of a diagnosis, he feels a drug option may not be for me. Even the surgeon for VATS was not encouraging about a drug option. In his words, "the drugs wreak havoc on your body." At the pre-VATS appointment he said my pfts were "bad" and he couldn't believe I wasn't on O2 already. Who knows- I'll just wait and see what happens at Columbia.I have a question for you about portable O2. I have a unit about 12 lbs. that was delivered on Friday (not IRON) which I filled while the delivery guy was there, but when I grabbed it this morning there was no O2 in it. My plan had been to fill it night before I was going to use it-I know I must have waited too long since I didn't use it Saturday or Sunday. But if I fill it tonight and then use it when I go out for my lunch hour tomorrow, will the O2 still be there? I have an appointment to get Helios and meet with Respiratory Tech on Wednesday- not sure what Helios is though, but I guess I'll find out. SO many new things to learn!- nne > >> > >> >> > > >> >> > > > >> >> > > > >> >> > > > > Hi everybody,> >> > > > > Well I saw my pulmo-dude last week and the surgeon yesterday and my> >> > > > > diagnosis is not specifically one thing or another. I'm going to > >> > write it> >> > > > > all here and maybe someone else had a similar result.> >> > > > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with> >> > > > > numerous fibroblastic foci and mild interstitial fibrosis.> >> > > > > Biopsies show a cellular mixed inflammatory infiltrate of > >> > lymphocytes and> >> > > > > histiocytes in the alveolar septae. Scattered throughout the > >> > alveoli are> >> > > > > several small fibroblastic foci in the interstitium. There is mild> >> > > > > interstitial fibrosis thickening of the alveolae septae. No dense> >> > > > > honeycombing. Findings are consistant with a cellular fibrosing > >> > interstitial> >> > > > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP.> >> > > > > Presence of fibroblastic foci favors UIP but the dense fibrosing > >> > associated> >> > > > > with UIP is not observed in the samples. A similar histologic > >> > picture may be> >> > > > > observed in collagen vascular disease, pneumoconoisis, and > >> > hypersensitivity> >> > > > > pneumonitis. Suggest correlation with clinical and radiologic > >> > findings.HUH?> >> > > > > This is not how an episode of HOUSE MD ends! Anyway I am being > >> > referred by> >> > > > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which > >> > has an> >> > > > > interstitial lung disease department to be evaluated. I am back > >> > at work and> >> > > > > so happy to be out of the house. My company is giving me a > >> > parking spot> >> > > > > closest to the lobby and I also got from Motor Vehicles a > >> > handicapped> >> > > > > placard since I am on O2 for exertion. - nne> >> > > > >> >> > > > >> >> > > > >> >> > > >> >> > > >> >> > > >> >> > >> >> > > > --> >> > > > Dyane L. Billings> >> > > > Senior Staff Accountant> >> > > > Ball & McGraw PC> >> > > >> >> > >> >> >> >> >> >>> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Hi nne, I have Helios and yes you must fill it up everyday. Preferably not long before you go out because it only lasts for as long as how you use it. If you use it continuously it will go quicker than on pulse. While the Helios system has its benefits, I think tanks have theirs as well. As Beth said I guess you do what works best for you. I'm still learning. Adrienne Subject: Re: results of VATS?????To: Breathe-Support Date: Monday, August 10, 2009, 4:40 PM Beth,First of all, welcome back- it sounds like your vacation was perfect- except for the oxygen tanks! Now about transplant issue- I really think Columbia is just going to evaluate me and then I guess if I qualify they may talk to me about transplant. My pulmo-dude brought the subject up because that really is the only way to achieve normalcy. The drugs, if they work at all, just slow the progression. I guess with my mish-mosh of a diagnosis, he feels a drug option may not be for me. Even the surgeon for VATS was not encouraging about a drug option. In his words, "the drugs wreak havoc on your body." At the pre-VATS appointment he said my pfts were "bad" and he couldn't believe I wasn't on O2 already. Who knows- I'll just wait and see what happens at Columbia.I have a question for you about portable O2. I have a unit about 12 lbs. that was delivered on Friday (not IRON) which I filled while the delivery guy was there, but when I grabbed it this morning there was no O2 in it. My plan had been to fill it night before I was going to use it-I know I must have waited too long since I didn't use it Saturday or Sunday. But if I fill it tonight and then use it when I go out for my lunch hour tomorrow, will the O2 still be there? I have an appointment to get Helios and meet with Respiratory Tech on Wednesday- not sure what Helios is though, but I guess I'll find out. SO many new things to learn!- nne > >> > >> >> > > >> >> > > > >> >> > > > >> >> > > > > Hi everybody,> >> > > > > Well I saw my pulmo-dude last week and the surgeon yesterday and my> >> > > > > diagnosis is not specifically one thing or another. I'm going to > >> > write it> >> > > > > all here and maybe someone else had a similar result.> >> > > > > Final Pathologic Diagnosis- Cellular Interstitial Inflammation with> >> > > > > numerous fibroblastic foci and mild interstitial fibrosis.> >> > > > > Biopsies show a cellular mixed inflammatory infiltrate of > >> > lymphocytes and> >> > > > > histiocytes in the alveolar septae. Scattered throughout the > >> > alveoli are> >> > > > > several small fibroblastic foci in the interstitium. There is mild> >> > > > > interstitial fibrosis thickening of the alveolae septae. No dense> >> > > > > honeycombing. Findings are consistant with a cellular fibrosing > >> > interstitial> >> > > > > pneumonitis. Differential diagnosis is a mixed NSIP pattern and UIP.> >> > > > > Presence of fibroblastic foci favors UIP but the dense fibrosing > >> > associated> >> > > > > with UIP is not observed in the samples. A similar histologic > >> > picture may be> >> > > > > observed in collagen vascular disease, pneumoconoisis, and > >> > hypersensitivity> >> > > > > pneumonitis. Suggest correlation with clinical and radiologic > >> > findings.HUH?> >> > > > > This is not how an episode of HOUSE MD ends! Anyway I am being > >> > referred by> >> > > > > my pulmo-dude to Columbia Presbyterian Medical Center-NYC which > >> > has an> >> > > > > interstitial lung disease department to be evaluated. I am back > >> > at work and> >> > > > > so happy to be out of the house. My company is giving me a > >> > parking spot> >> > > > > closest to the lobby and I also got from Motor Vehicles a > >> > handicapped> >> > > > > placard since I am on O2 for exertion. - nne> >> > > > >> >> > > > >> >> > > > >> >> > > >> >> > > >> >> > > >> >> > >> >> > > > --> >> > > > Dyane L. Billings> >> > > > Senior Staff Accountant> >> > > > Ball & McGraw PC> >> > > >> >> > >> >> >> >> >> >>> >> >> Quote Link to comment Share on other sites More sharing options...
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