Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Are these his comments or the radiology report? Regardless there are a lot of adjectives in there that seem to soften things....peripheral, mild, scattered, also noted (not an adjective, I know), few, mildly, few. My translation as to all I can gather out of that is: something wrong with her lungs but not completely sure what and doesn't seem too bad at this time. Now as to why he didn't mention it and cover it, we know there is no excuse for that. I think they should hand you a copy of the radiologists report and discuss it item by item with you. I sometimes think radiology reports from CT's in particular mention all the possibilities but also fail to pin anything down. Of course the fact is that on determining what form of PF, diagnoses from CT's are only 60% accurate. But you should feel annoyed. Thats your lungs being described, but he never explained. > > I'm sure you will remember the Dr. I'm leaving....on my way to OHSU in Feb. Well, I requested my records from him and I'm a bit surprised at what I read. > I'll be brief... " The disease is primarily peripheral with strand densities and mild honeycombing consistent with idiopathic pulmonary fibrosis " .>>> " scattered areas of fibrosis and honeycombing: " >>> " areas of ground-glass opacification are also noted " .>>> " There are a few areas of traction bronchiectasis " !!! > (This is the doc who told me in Dec. that he didn't think I had IPF and I'm not sick enough to die...remember?) > Well, he never mentioned to me any honeycombing OR: " Scattered arteriosclerotic calcifications are noted within the aorta " . OR: " Heart size is mildly enlarged " . OR: " Abnormalities involve all five lobes but there is relative sparing of the right middle lobe " . > This " bronchiectasis " thing was never mentioned! I'll have to look it up on the net, I don't even know what this is...other than some of you having it too. > I'm sooooo surprised at this information he never mentioned. I wonder why he would elect not to do so. > Thanks for listening, it's my turn today. I feel annoyed, sad and confused. > Of course I'm not going to die in the next few months anyway but him telling me he didn't think I have IPF tied into I'm not sick enough....and yet these are HIS NOTES! > > Hear me talk! > on him! > > > Mama-Sher, 69; IPF, 3-06, OR. > Don't fret about tomorrow, God is already there! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Bruce...Dr notes. I'm just griped because he didn't mention any of this to me........ Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Re: To all from Mama Are these his comments or the radiology report? Regardless there are a lot of adjectives in there that seem to soften things....peripheral, mild, scattered, also noted (not an adjective, I know), few, mildly, few. My translation as to all I can gather out of that is: something wrong with her lungs but not completely sure what and doesn't seem too bad at this time. Now as to why he didn't mention it and cover it, we know there is no excuse for that. I think they should hand you a copy of the radiologists report and discuss it item by item with you. I sometimes think radiology reports from CT's in particular mention all the possibilities but also fail to pin anything down. Of course the fact is that on determining what form of PF, diagnoses from CT's are only 60% accurate. But you should feel annoyed. Thats your lungs being described, but he never explained.>> I'm sure you will remember the Dr. I'm leaving....on my way to OHSU in Feb. Well, I requested my records from him and I'm a bit surprised at what I read.> I'll be brief..."The disease is primarily peripheral with strand densities and mild honeycombing consistent with idiopathic pulmonary fibrosis".>>> "scattered areas of fibrosis and honeycombing:">>> "areas of ground-glass opacification are also noted".>>> "There are a few areas of traction bronchiectasis" !!!> (This is the doc who told me in Dec. that he didn't think I had IPF and I'm not sick enough to die...remember?)> Well, he never mentioned to me any honeycombing OR: "Scattered arteriosclerotic calcifications are noted within the aorta". OR: "Heart size is mildly enlarged". OR: "Abnormalities involve all five lobes but there is relative sparing of the right middle lobe".> This "bronchiectasis" thing was never mentioned! I'll have to look it up on the net, I don't even know what this is...other than some of you having it too.> I'm sooooo surprised at this information he never mentioned. I wonder why he would elect not to do so. > Thanks for listening, it's my turn today. I feel annoyed, sad and confused.> Of course I'm not going to die in the next few months anyway but him telling me he didn't think I have IPF tied into I'm not sick enough....and yet these are HIS NOTES!> > Hear me talk! > on him!> > > Mama-Sher, 69; IPF, 3-06, OR.> Don't fret about tomorrow, God is already there!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Oh I agree completely. Just didn't sound like doctor language. Still betting he took it from radiologist report. But, I thought before this that we were beyond doctor's hiding the truth. When I was young they always tried to soften everything. They would tell families the truth sometimes but lie to the patient. The after enough suits they woke up and mostly started being direct and honest. But that should mean not just honest in what you say but giving the entire story. It's like a child who doesn't lie but just leaves out a lot of key parts of what took place. Its like my former pulmonologist should in no way be taking new patients. If you don't have the time to spend with them send them to someone who does. My oncologist was great. He handed me the radiologists report. He covered it all. He told me what he saw, what he believed and would recommend. But he also told me that he could be wrong. Occasionally it was different and the only way to be sure would be to have a biopsy of my lymph nodes. So I made an informed decision. Get another CT soon and then he'll educate me on it and I'll make another informed decision. > > > > I'm sure you will remember the Dr. I'm leaving....on my way to OHSU > in Feb. Well, I requested my records from him and I'm a bit surprised > at what I read. > > I'll be brief... " The disease is primarily peripheral with strand > densities and mild honeycombing consistent with idiopathic pulmonary > fibrosis " .>>> " scattered areas of fibrosis and > honeycombing: " >>> " areas of ground-glass opacification are also > noted " .>>> " There are a few areas of traction bronchiectasis " !!! > > (This is the doc who told me in Dec. that he didn't think I had IPF > and I'm not sick enough to die...remember?) > > Well, he never mentioned to me any honeycombing OR: " Scattered > arteriosclerotic calcifications are noted within the aorta " . > OR: " Heart size is mildly enlarged " . OR: " Abnormalities involve all > five lobes but there is relative sparing of the right middle lobe " . > > This " bronchiectasis " thing was never mentioned! I'll have to look > it up on the net, I don't even know what this is...other than some of > you having it too. > > I'm sooooo surprised at this information he never mentioned. I > wonder why he would elect not to do so. > > Thanks for listening, it's my turn today. I feel annoyed, sad and > confused. > > Of course I'm not going to die in the next few months anyway but > him telling me he didn't think I have IPF tied into I'm not sick > enough....and yet these are HIS NOTES! > > > > Hear me talk! > > on him! > > > > > > Mama-Sher, 69; IPF, 3-06, OR. > > Don't fret about tomorrow, God is already there! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 You have Chronic Broncitis coupled with PF. Which includes prelude to sleep apnea, astma symptoms ( which may be mis-diagnosed ) I think we as patients need to quit trusting Dr's as much and ask for copies of all patholofy reports or any other written report from the testing we all go through. But we were raised to trust ourdoctors and they would take care of us. A lot of times just llike a car the symptoms can be many. God Bless. Re: To all from Mama Are these his comments or the radiology report? Regardless there are a lot of adjectives in there that seem to soften things....periphera l, mild, scattered, also noted (not an adjective, I know), few, mildly, few. My translation as to all I can gather out of that is: something wrong with her lungs but not completely sure what and doesn't seem too bad at this time. Now as to why he didn't mention it and cover it, we know there is no excuse for that. I think they should hand you a copy of the radiologists report and discuss it item by item with you. I sometimes think radiology reports from CT's in particular mention all the possibilities but also fail to pin anything down. Of course the fact is that on determining what form of PF, diagnoses from CT's are only 60% accurate. But you should feel annoyed. Thats your lungs being described, but he never explained.>> I'm sure you will remember the Dr. I'm leaving....on my way to OHSU in Feb. Well, I requested my records from him and I'm a bit surprised at what I read.> I'll be brief..."The disease is primarily peripheral with strand densities and mild honeycombing consistent with idiopathic pulmonary fibrosis".>> > "scattered areas of fibrosis and honeycombing: ">>> "areas of ground-glass opacification are also noted".>>> "There are a few areas of traction bronchiectasis" !!!> (This is the doc who told me in Dec. that he didn't think I had IPF and I'm not sick enough to die...remember? )> Well, he never mentioned to me any honeycombing OR: "Scattered arteriosclerotic calcifications are noted within the aorta". OR: "Heart size is mildly enlarged". OR: "Abnormalities involve all five lobes but there is relative sparing of the right middle lobe".> This "bronchiectasis" thing was never mentioned! I'll have to look it up on the net, I don't even know what this is...other than some of you having it too.> I'm sooooo surprised at this information he never mentioned. I wonder why he would elect not to do so. > Thanks for listening, it's my turn today. I feel annoyed, sad and confused.> Of course I'm not going to die in the next few months anyway but him telling me he didn't think I have IPF tied into I'm not sick enough....and yet these are HIS NOTES!> > Hear me talk! > on him!> > > Mama-Sher, 69; IPF, 3-06, OR.> Don't fret about tomorrow, God is already there!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Hi Sher, here. The " traction bronchiecstasis " is a product of pulmonary fibrosis. It is a distortion of the airways caused by scar tissue. (It's on my Dx also.) " Honeycombing " and " ground-glass opacities " might give an indication of the etiology of the disease. (My Dx again.) You also have hardening of the arteries (arteriosclerotic calcifications) potentially a very serious condition and/or complication for someone with PF. Sher I know that for us our disease very real! Very here and now! I am not trying to make excuses for your pulmonologist but it may well be that he wasn't certain. Given that this is an orphan disease it is also possible that he wasn't confident in the radiologists assessment. My suggestion ... Ask questions! Also ask your Dr's at OHSU next month to copy your referring Dr their findings. (on an ongoing basis) This is another means at our disposal to further educate people about our chronic illness. Say I don't understand. Ask more questions! Peace UIP/LCH 5.06 CA > > I'm sure you will remember the Dr. I'm leaving....on my way to OHSU in Feb. Well, I requested my records from him and I'm a bit surprised at what I read. > I'll be brief... " The disease is primarily peripheral with strand densities and mild honeycombing consistent with idiopathic pulmonary fibrosis " .>>> " scattered areas of fibrosis and honeycombing: " >>> " areas of ground-glass opacification are also noted " .>>> " There are a few areas of traction bronchiectasis " !!! > (This is the doc who told me in Dec. that he didn't think I had IPF and I'm not sick enough to die...remember?) > Well, he never mentioned to me any honeycombing OR: " Scattered arteriosclerotic calcifications are noted within the aorta " . OR: " Heart size is mildly enlarged " . OR: " Abnormalities involve all five lobes but there is relative sparing of the right middle lobe " . > This " bronchiectasis " thing was never mentioned! I'll have to look it up on the net, I don't even know what this is...other than some of you having it too. > I'm sooooo surprised at this information he never mentioned. I wonder why he would elect not to do so. > Thanks for listening, it's my turn today. I feel annoyed, sad and confused. > Of course I'm not going to die in the next few months anyway but him telling me he didn't think I have IPF tied into I'm not sick enough....and yet these are HIS NOTES! > > Hear me talk! > on him! > > > Mama-Sher, 69; IPF, 3-06, OR. > Don't fret about tomorrow, God is already there! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Sher, You have every right to be angry!!! He has an obligation to tell you!!! What if you hadn't asked for your records? Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley Sher Bauman wrote: I'm sure you will remember the Dr. I'm leaving....on my way to OHSU in Feb. Well, I requested my records from him and I'm a bit surprised at what I read. I'll be brief..."The disease is primarily peripheral with strand densities and mild honeycombing consistent with idiopathic pulmonary fibrosis".>>> "scattered areas of fibrosis and honeycombing:">>> "areas of ground-glass opacification are also noted".>>> "There are a few areas of traction bronchiectasis" !!! (This is the doc who told me in Dec. that he didn't think I had IPF and I'm not sick enough to die...remember?) Well, he never mentioned to me any honeycombing OR: "Scattered arteriosclerotic calcifications are noted within the aorta". OR: "Heart size is mildly enlarged". OR: "Abnormalities involve all five lobes but there is relative sparing of the right middle lobe". This "bronchiectasis" thing was never mentioned! I'll have to look it up on the net, I don't even know what this is...other than some of you having it too. I'm sooooo surprised at this information he never mentioned. I wonder why he would elect not to do so. Thanks for listening, it's my turn today. I feel annoyed, sad and confused. Of course I'm not going to die in the next few months anyway but him telling me he didn't think I have IPF tied into I'm not sick enough....and yet these are HIS NOTES! Hear me talk! on him! Mama-Sher, 69; IPF, 3-06, OR. Don't fret about tomorrow, God is already there! No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.7/1232 - Release Date: 1/18/2008 7:32 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Bruce...the issue (as you know) is not where the information originated but that it wasn't given to me, the patient! And....when I received these records, the last time I saw him was not included. (Oversight? ha.) So, mama gets back on the phone and specifically requests Nov.4th records. I was first told "he didn't dictate that day". Oh, don't mess with me child!! I told her, "I will pursue this, the records are mine to request and not to tell me a Dr. isn't dictating!" Dr. just doesn't want it in writing to reveal the stupid thing he told me. (He doesn't think I have IPF). I hope the records are here Monday or I'll be primed for another call. Sometimes one just has to sound the battle call. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Re: To all from Mama Oh I agree completely. Just didn't sound like doctor language. Still betting he took it from radiologist report. But, I thought before this that we were beyond doctor's hiding the truth. When I was young they always tried to soften everything. They would tell families the truth sometimes but lie to the patient. The after enough suits they woke up and mostly started being direct and honest. But that should mean not just honest in what you say but giving the entire story. It's like a child who doesn't lie but just leaves out a lot of key parts of what took place. Its like my former pulmonologist should in no way be taking new patients. If you don't have the time to spend with them send them to someone who does. My oncologist was great. He handed me the radiologists report. He covered it all. He told me what he saw, what he believed and would recommend. But he also told me that he could be wrong. Occasionally it was different and the only way to be sure would be to have a biopsy of my lymph nodes. So I made an informed decision. Get another CT soon and then he'll educate me on it and I'll make another informed decision.> >> > I'm sure you will remember the Dr. I'm leaving....on my way to OHSU > in Feb. Well, I requested my records from him and I'm a bit surprised > at what I read.> > I'll be brief..."The disease is primarily peripheral with strand > densities and mild honeycombing consistent with idiopathic pulmonary > fibrosis".>>> "scattered areas of fibrosis and > honeycombing:">>> "areas of ground-glass opacification are also > noted".>>> "There are a few areas of traction bronchiectasis" !!!> > (This is the doc who told me in Dec. that he didn't think I had IPF > and I'm not sick enough to die...remember?)> > Well, he never mentioned to me any honeycombing OR: "Scattered > arteriosclerotic calcifications are noted within the aorta". > OR: "Heart size is mildly enlarged". OR: "Abnormalities involve all > five lobes but there is relative sparing of the right middle lobe".> > This "bronchiectasis" thing was never mentioned! I'll have to look > it up on the net, I don't even know what this is...other than some of > you having it too.> > I'm sooooo surprised at this information he never mentioned. I > wonder why he would elect not to do so. > > Thanks for listening, it's my turn today. I feel annoyed, sad and > confused.> > Of course I'm not going to die in the next few months anyway but > him telling me he didn't think I have IPF tied into I'm not sick > enough....and yet these are HIS NOTES!> > > > Hear me talk! > > on him!> > > > > > Mama-Sher, 69; IPF, 3-06, OR.> > Don't fret about tomorrow, God is already there!> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 .... thanks for the explanations! Last night I just shut'er'down and stopped obsessing about it! This morning I was ready to search the net and now I don't need too. I pretty much figured out the "words" but didn't know the details as to how they pertain to me. Yes, the hardening of the arteries is a worrisome thing too. Oh, dearheart! This mama asks questions! I think I sometimes put people off because of my questions. This time around, I really don't care. Maybe it's my age. It seems Drs. have to rely on the reports of the radiologist, labs, and so on, to gain info. All my records are already at OHSU. Peace to you too . Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Re: To all from Mama Hi Sher, here. The "traction bronchiecstasis" is a product of pulmonary fibrosis. Itis a distortion of the airways caused by scar tissue. (It's on my Dxalso.) "Honeycombing" and "ground-glass opacities" might give anindication of the etiology of the disease. (My Dx again.) You alsohave hardening of the arteries (arteriosclerotic calcifications)potentially a very serious condition and/or complication for someonewith PF.Sher I know that for us our disease very real! Very here and now! I amnot trying to make excuses for your pulmonologist but it may well bethat he wasn't certain. Given that this is an orphan disease it isalso possible that he wasn't confident in the radiologists assessment.My suggestion ... Ask questions! Also ask your Dr's at OHSU next monthto copy your referring Dr their findings. (on an ongoing basis) Thisis another means at our disposal to further educate people about ourchronic illness. Say I don't understand. Ask more questions!Peace UIP/LCH 5.06 CA>> I'm sure you will remember the Dr. I'm leaving....on my way to OHSUin Feb. Well, I requested my records from him and I'm a bit surprisedat what I read.> I'll be brief..."The disease is primarily peripheral with stranddensities and mild honeycombing consistent with idiopathic pulmonaryfibrosis".>>> "scattered areas of fibrosis and honeycombing:">>>"areas of ground-glass opacification are also noted".>>> "There are afew areas of traction bronchiectasis" !!!> (This is the doc who told me in Dec. that he didn't think I had IPFand I'm not sick enough to die...remember?)> Well, he never mentioned to me any honeycombing OR: "Scatteredarteriosclerotic calcifications are noted within the aorta". OR: "Heart size is mildly enlarged". OR: "Abnormalities involve all fivelobes but there is relative sparing of the right middle lobe".> This "bronchiectasis" thing was never mentioned! I'll have to lookit up on the net, I don't even know what this is...other than some ofyou having it too.> I'm sooooo surprised at this information he never mentioned. Iwonder why he would elect not to do so. > Thanks for listening, it's my turn today. I feel annoyed, sad andconfused.> Of course I'm not going to die in the next few months anyway but himtelling me he didn't think I have IPF tied into I'm not sickenough....and yet these are HIS NOTES!> > Hear me talk! > on him!> > > Mama-Sher, 69; IPF, 3-06, OR.> Don't fret about tomorrow, God is already there!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Actually there are two points, I believe. First, that you weren't given full complete information and this is absolutely the doctor's fault. There has never been any argument with that. Second, radiologists reports and the use of them. In this area, often radiologists are using many words of " things not eliminated " or " an indication of " or " may be a mild " but even when the radiologists are quite definitive its like the doctors don't even read them. I had s CT scan on June 8 showing ILD, in all likelihood IPF. I saw 5 different doctors who all had access to those scans and the radiologist report before the diagnosis was given to me by a 6th doctor on August 16. Never once during that time was anything mentioned regarding a lung disease, just swollen lymph nodes. See, the words you typed sound like a radiologist and it also sounds like your doctor either didn't pay attention even though he had them in his notes, disregarded them, or was otherwise incompetent. Regardless what you got was contradictory and incomplete. At the opposite end of the spectrum, my neurologist will have copies of any scans printed (the office now generally just uses electronic versions) and will put them on the board in his office and go over them with you pointing out exactly what he sees on each. I think your doctor didn't believe you had IPF so dismissed it all, rather than properly discussing it and then advising you why he has that believe in spite of the reports. Now, the term " IPF " vs " PF " gets more complicated, partly because they are often used interchangeably even though pathologically IPF is a distinctive form, while often used generically just as any unknown cause. And, he didn't even say whether he believes you have another form of PF or why he believes anything. He clearly is remiss. I do believe in general the quality of medical care in this country is falling significantly. While we can do things we never could before, perform surgeries with more precision, and test like never before, the quality control is diminishing. You don't get time. You don't get completeness. Radiologists reports are partially ignored. The most reputable hospitals are having major problems with staph infections. Emergency rooms long ago lost any sense of urgency or emergency. Routine things are being overlooked. And while I place the blame on the profession, I place it also on those running the profession, which just happens to be the insurance companies. I had my VATS in the most respected new Heart Hospital (and Lung) in the area and the sloppiness from pre-admission to billing months later is prevalent in every area. I was in ER on Dec 31 and the chest x-ray wasn't even compared to one in November which was done at a related medical practice and on their computer. I had a chest xray about ten days ago that was not then compared to the Dec 31 but just to the November one until my doctor sent another request to radiology. I was sent a home health care nurse who didn't know what disease I had or what procedure I'd been through. I got a completely useless sleep study at a new center in a highly respected hospital where they decided to turn two nights into one and accomplish nothing. Just a couple of additional comments on some of the cause and in no way excusing the doctors. With the cost of operating and with the cost of malpractice insurance are you (meaning everyone) looking at how little sometimes your physicians are getting paid (including copay), at the negotiated insurance prices? Well, here are a few of mine and I can tell you they've dropped on average 20% from what the insurers were paying them a few years ago and this only leads to a greater rush and sloppier work. Gastroenerologist-$66.89, Psychiatrist-$60.00, Psychologist-$62.00 in 2007, dropping to $45.00 in 2008 (hour session), Diabetes testing (two blood draws) and hemoglobin-$41.00 (including review), Monthly Blood work for Pulmonologist-$20.00 (including review), Neurologist-$103.12, Surgeon's charge for VATS including surgery and 5 days of monitoring and visits-$1510.49 (by the way the anesthesiologist got more), Cardiologist for Echocardiogram and Stress Echo (had to be there for stress echo) and reviewing those and Nuclear Stress plus discussion with patient-$106.62, Oncologist-$119.00, Rheumatologist-$66.89, Monthly supplying and delivery of portable oxygen canisters (of course including filling and 4-8 trips per month, etc.)-$34.80, and five days in a Hospital, basically an intensive care environment (2 days billed as intensive care) including all incidentals, meds, surgical facility, recovery room, nursing care-$6,580 (same length of time and another surgery in 2005 with no intensive care was-$10,450 so a drop of nearly 40%). Now, I'm not making excuses for the sloppiness of doctors, but I am stating that with this taking place only expect it to continue downhill. The only thing worse was when Aetna attempted to change payment from a per visit to a per patient amount, regardless of treatment or number of visits, which would have made it nearly impossible to get attention. The doctors in Texas appealed and the insurance commission ruled the practice illegal and fined them millions. However, this is exactly how HMO's often work and were working when I was covered by one in South Florida. It was impossible to get into a doctor. On average only 60% of Health Insurance Company Revenues go to payments for Medical Expenses. So, ultimately who are the winners and losers? Winner-Insurer. Loser- Patient. Deteriorating year by year-Quality of Health Care. Now, meanwhile we develop new meds and new procedures and make great advances. Just we do all the care very sloppily. > > > > > > I'm sure you will remember the Dr. I'm leaving....on my way to > OHSU > > in Feb. Well, I requested my records from him and I'm a bit > surprised > > at what I read. > > > I'll be brief... " The disease is primarily peripheral with > strand > > densities and mild honeycombing consistent with idiopathic > pulmonary > > fibrosis " .>>> " scattered areas of fibrosis and > > honeycombing: " >>> " areas of ground-glass opacification are also > > noted " .>>> " There are a few areas of traction bronchiectasis " !!! > > > (This is the doc who told me in Dec. that he didn't think I had > IPF > > and I'm not sick enough to die...remember?) > > > Well, he never mentioned to me any honeycombing OR: " Scattered > > arteriosclerotic calcifications are noted within the aorta " . > > OR: " Heart size is mildly enlarged " . OR: " Abnormalities involve > all > > five lobes but there is relative sparing of the right middle > lobe " . > > > This " bronchiectasis " thing was never mentioned! I'll have to > look > > it up on the net, I don't even know what this is...other than > some of > > you having it too. > > > I'm sooooo surprised at this information he never mentioned. I > > wonder why he would elect not to do so. > > > Thanks for listening, it's my turn today. I feel annoyed, sad > and > > confused. > > > Of course I'm not going to die in the next few months anyway > but > > him telling me he didn't think I have IPF tied into I'm not sick > > enough....and yet these are HIS NOTES! > > > > > > Hear me talk! > > > on him! > > > > > > > > > Mama-Sher, 69; IPF, 3-06, OR. > > > Don't fret about tomorrow, God is already there! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Sher, I have always understood that when "ground glass opacities can be seen", it means active disease. Has he been saying that you are stable. Will you have another PFT and walk test when you go? It is about time that you got some adequate medical attention. I cannot believe that you do not even have oxygen there ...... and you can't even get up and down your stairs......without struggling. I pray that someone takes an interest in your life and the quality of your life. Take your daughter with you. I find that when I take someone with me, I get more time and more explanations. Bless you! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> >> > I'm sure you will remember the Dr. I'm leaving....on my way to OHSU> in Feb. Well, I requested my records from him and I'm a bit surprised> at what I read.> > I'll be brief..."The disease is primarily peripheral with strand> densities and mild honeycombing consistent with idiopathic pulmonary> fibrosis".>>> "scattered areas of fibrosis and honeycombing:">>>> "areas of ground-glass opacification are also noted".>>> "There are a> few areas of traction bronchiectasis" !!!> > (This is the doc who told me in Dec. that he didn't think I had IPF> and I'm not sick enough to die...remember?)> > Well, he never mentioned to me any honeycombing OR: "Scattered> arteriosclerotic calcifications are noted within the aorta". OR: > "Heart size is mildly enlarged". OR: "Abnormalities involve all five> lobes but there is relative sparing of the right middle lobe".> > This "bronchiectasis" thing was never mentioned! I'll have to look> it up on the net, I don't even know what this is...other than some of> you having it too.> > I'm sooooo surprised at this information he never mentioned. I> wonder why he would elect not to do so. > > Thanks for listening, it's my turn today. I feel annoyed, sad and> confused.> > Of course I'm not going to die in the next few months anyway but him> telling me he didn't think I have IPF tied into I'm not sick> enough....and yet these are HIS NOTES!> > > > Hear me talk! > > on him!> > > > > > Mama-Sher, 69; IPF, 3-06, OR.> > Don't fret about tomorrow, God is already there!> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 ... I like my mask too. It's the petite blue-gel and quite comfortable. The actual 'head-gear' is sometimes a nuisance but oh well. I do sleep better and never travel without it. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Re: To all from Mama Are these his comments or the radiology report? Regardless there are a lot of adjectives in there that seem to soften things....periphera l, mild, scattered, also noted (not an adjective, I know), few, mildly, few. My translation as to all I can gather out of that is: something wrong with her lungs but not completely sure what and doesn't seem too bad at this time. Now as to why he didn't mention it and cover it, we know there is no excuse for that. I think they should hand you a copy of the radiologists report and discuss it item by item with you. I sometimes think radiology reports from CT's in particular mention all the possibilities but also fail to pin anything down. Of course the fact is that on determining what form of PF, diagnoses from CT's are only 60% accurate. But you should feel annoyed. Thats your lungs being described, but he never explained.>> I'm sure you will remember the Dr. I'm leaving....on my way to OHSU in Feb. Well, I requested my records from him and I'm a bit surprised at what I read.> I'll be brief..."The disease is primarily peripheral with strand densities and mild honeycombing consistent with idiopathic pulmonary fibrosis".>> > "scattered areas of fibrosis and honeycombing: ">>> "areas of ground-glass opacification are also noted".>>> "There are a few areas of traction bronchiectasis" !!!> (This is the doc who told me in Dec. that he didn't think I had IPF and I'm not sick enough to die...remember? )> Well, he never mentioned to me any honeycombing OR: "Scattered arteriosclerotic calcifications are noted within the aorta". OR: "Heart size is mildly enlarged". OR: "Abnormalities involve all five lobes but there is relative sparing of the right middle lobe".> This "bronchiectasis" thing was never mentioned! I'll have to look it up on the net, I don't even know what this is...other than some of you having it too.> I'm sooooo surprised at this information he never mentioned. I wonder why he would elect not to do so. > Thanks for listening, it's my turn today. I feel annoyed, sad and confused.> Of course I'm not going to die in the next few months anyway but him telling me he didn't think I have IPF tied into I'm not sick enough....and yet these are HIS NOTES!> > Hear me talk! > on him!> > > Mama-Sher, 69; IPF, 3-06, OR.> Don't fret about tomorrow, God is already there!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Joyce... Rich has gone with me on occasion and he will go with me again on first visit to OHSU. I think sometimes I have to almost have a 'witness' because of the way I'm treated. I do really believe my age is a factor. When I rec'd training to work w/seniors we covered how seniors are treated like half-wits and deaf and blind. I was always sooo conscious of that and now I am a senior, feeling those exact subtle 'judgments. All I can do is wait now. In my post to Tina I wrote about him now saying that because I have been stable for two years "he thinks this represents old burnt out ILD not IPF" or, Atypical asthma. Yes, I'm confused. But only for awhile longer. Thanks for your reply and I do hope you are having tolerable days and nights too. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Re: To all from Mama Sher, I have always understood that when "ground glass opacities can be seen", it means active disease. Has he been saying that you are stable. Will you have another PFT and walk test when you go? It is about time that you got some adequate medical attention. I cannot believe that you do not even have oxygen there ...... and you can't even get up and down your stairs......without struggling. I pray that someone takes an interest in your life and the quality of your life. Take your daughter with you. I find that when I take someone with me, I get more time and more explanations. Bless you! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> >> > I'm sure you will remember the Dr. I'm leaving....on my way to OHSU> in Feb. Well, I requested my records from him and I'm a bit surprised> at what I read.> > I'll be brief..."The disease is primarily peripheral with strand> densities and mild honeycombing consistent with idiopathic pulmonary> fibrosis".>>> "scattered areas of fibrosis and honeycombing:">>>> "areas of ground-glass opacification are also noted".>>> "There are a> few areas of traction bronchiectasis" !!!> > (This is the doc who told me in Dec. that he didn't think I had IPF> and I'm not sick enough to die...remember?)> > Well, he never mentioned to me any honeycombing OR: "Scattered> arteriosclerotic calcifications are noted within the aorta". OR: > "Heart size is mildly enlarged". OR: "Abnormalities involve all five> lobes but there is relative sparing of the right middle lobe".> > This "bronchiectasis" thing was never mentioned! I'll have to look> it up on the net, I don't even know what this is...other than some of> you having it too.> > I'm sooooo surprised at this information he never mentioned. I> wonder why he would elect not to do so. > > Thanks for listening, it's my turn today. I feel annoyed, sad and> confused.> > Of course I'm not going to die in the next few months anyway but him> telling me he didn't think I have IPF tied into I'm not sick> enough....and yet these are HIS NOTES!> > > > Hear me talk! > > on him!> > > > > > Mama-Sher, 69; IPF, 3-06, OR.> > Don't fret about tomorrow, God is already there!> >> Quote Link to comment Share on other sites More sharing options...
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