Guest guest Posted September 19, 2009 Report Share Posted September 19, 2009 Sher, You reached out your warm welcoming hand and made me feel right at home. There is always that little note of caring in all of your posts. It wasn't long before I knew why they call you MamaSher. I hope you are beginning to feel back to normal, what ever that may man in our lives. Moving just takes it out of us. We have to do so much of those things that remind us just how limited we have become, especially when exerting ourselves. And where we move to doesn't feel like home right away either. But some of your family is close by and probably come by often. Reading your post brightened my day very much. Thank you Sher. Jerry > > > > > > > > > > Anyone know how the term end-stage is typically used in relation > > to > > > > this > > > > > disease? As in " There is excessive end-stage lung disease. " Is > > this > > > > just a > > > > > common modifier used in any diagnosis of Pulmonary Fibrosis? It's > > > > certainly > > > > > not a nice term to see in your report.. > > > > > > > > > > > > > > > > > > > > Bob Dopher IPF 04/07 > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2009 Report Share Posted September 19, 2009 I find the definition of this disease to be difficult to explain to people in the " outside world " - you know those strange people who can walk to the bathroom and NOT be out of breath (LOL). I have been finding it harder to deal with the breathers than fibrosis. Doctors are obsessed to pin a specific name on illnesses. All the types of ILD to me are virtually interchangeable, with the same prognosis so who cares what the name is-WE should come up with an all-encompassing name. It should have an OSIS at the end, how about nonrespirosis (respire- from Latin root to breathe). After all, it's all about shortness of breath. nne, ILD 6/09 > > My report after the CT scan said end stage also. > I DO NOT AGREE!!!!!!!!!!!!!!!!!! > Joe > >    > JOE & JOANIE LAMENSKIE > IPF JAN. 2008 > > -- Definition > > > Anyone know how the term end-stage is typically used in relation to this > disease? As in “There is excessive end-stage lung disease…†Is this just a > common modifier used in any diagnosis of Pulmonary Fibrosis? It’s certainly > not a nice term to see in your report…. > > Bob Dopher IPF 04/07 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2009 Report Share Posted September 19, 2009 nne I have to caution about one thing. All the forms of ILD are not virtually interchangeable. There are very different prognoses and different responses to medications. The prognosis of NSIP vs. UIP is very different. The prognosis is different between the two forms of NSIP. The prognosis of UIP even can vary if a cause is determined such as one of hypersensitivity. There is value in the specific name. Now, as to the public, just calling them pulmonary fibrosis to fit them all is easier and fine. I'm not faulting anyone who is comfortable not knowing specifics and choosing a treatment or non-treatment regardless. Many doctors recommend just doing imuran and prednisone and letting the results tell you ultimately which form you had. But there are important differences between the types. > > > > My report after the CT scan said end stage also. > > I DO NOT AGREE!!!!!!!!!!!!!!!!!! > > Joe > > > >    > > JOE & JOANIE LAMENSKIE > > IPF JAN. 2008 > > > > -- Definition > > > > > > Anyone know how the term end-stage is typically used in relation to this > > disease? As in “There is excessive end-stage lung disease…†Is this just a > > common modifier used in any diagnosis of Pulmonary Fibrosis? It’s certainly > > not a nice term to see in your report…. > > > > Bob Dopher IPF 04/07 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2009 Report Share Posted September 19, 2009 How 'bout this definition for "end-stage"With Pulmonary Fibrosis, doctors may refer to "end stage disease". One should ask their doctor what he means by that, or ask the doc if they see that phrase in a CT report or pathology report. This is because that term COULD POSSIBLY ONLY be referring to the fact that one's lungs have 'honeycombing' present. Honeycombing is often referred to as "end stage" disease, because it is the last step in the fibrotic process. The alveoli or alveolar sacs get enough fibrosis or scar tissue built up, that the walls collapse, and these 'honeycomb' like spaces in the lung tissue develop and no gas exchange can get through in these spaces. HOWEVER, it is the TOTAL EXTENT of the honeycombing throughout the entire lungs that one must look at before they can say a patient is in the 'end stages' of the disease. Doctors would be wise to clarify this and put this term in context for their patients if the subject does or needs to come up. (Holly/Huff n Puff Forums Support for people with interstitial lung disease) C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Saturday, September 19, 2009 1:07:00 PMSubject: Re: Re: Definition I think when we are diagnosed we are all considered end stage on paper work do to the prognosis of the disease. I haven't really known what to expect but I am on the ol' learning curve now. WOW some ride. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Come to think of it, when I was in ICU because of my biopsy, a friend called the nurses station and the nurse told her my diagnoses was "End Stage" pulmonary Fibrosis.... .Maybe the end stage is the fibrosis? Fibrosis being the end stage of ILD. Joyce Rudy AZ birds Re: Definition Bruce, Dyanne and Bob, Yes I will be totally outraged if I die of something other than my lungs playing out. All the basis are covered as far as I know. The treadmill gets exercised daily, and I am known now as Uncle Nut or Nut Man, hopefully because I love raw nuts and fruits. Tyty Nursery will be sending 10 trees here, 6 of which are pecan trees. This should have happened 4 years ago, and now that I am as old as I have ever been, who knows if the pecan trees will bare before I cross the bar. When I read "end-stage" on my biopsy report, who would have imagined that I would be writing this 4 years out. Only my pulmo in New Orleans offered any sign of hope. My other 2 pulmonologists could have used the term "terminal" and not had any greater effect than end-stage. I should have stopped to thank my first two pulmos for being politically correct. Just didn't think of it.Jerry/Mississippi/ 54/IPF/dx April 05 > > > >> > > > Anyone know how the term end-stage is typically used in relation> to> > > this> > > > disease? As in "There is excessive end-stage lung disease." Is> this> > > just a> > > > common modifier used in any diagnosis of Pulmonary Fibrosis? It's> > > certainly> > > > not a nice term to see in your report..> > > >> > > >> > > >> > > > Bob Dopher IPF 04/07> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2009 Report Share Posted September 20, 2009 Bruce- You are so knowledgable about this horrid disease- I was actually told because my biopsy showed NSIP, aspects of UIP and Hypersensitivity Pneumonitis that it was all the same (this was from the surgeon no less) Thanks for setting me straight! > > > > > > My report after the CT scan said end stage also. > > > I DO NOT AGREE!!!!!!!!!!!!!!!!!! > > > Joe > > > > > >    > > > JOE & JOANIE LAMENSKIE > > > IPF JAN. 2008 > > > > > > -- Definition > > > > > > > > > Anyone know how the term end-stage is typically used in relation to > this > > > disease? As in “There is excessive end-stage lung > disease…†Is this just a > > > common modifier used in any diagnosis of Pulmonary Fibrosis? > It’s certainly > > > not a nice term to see in your report…. > > > > > > Bob Dopher IPF 04/07 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2009 Report Share Posted September 20, 2009 Well, surgeons deal with surgery every day and most don't have time to become expert in other areas. Even among pulmonologists, very few are expert with PF. Certainly with that diagnosis I'd want to real the pathology report myself and discuss it directly with an ILD expert. I'd also want my biopsy slides reviewed my a second pathologist, preferably one connected to an ILD center. > > > > > > > > My report after the CT scan said end stage also. > > > > I DO NOT AGREE!!!!!!!!!!!!!!!!!! > > > > Joe > > > > > > > >    > > > > JOE & JOANIE LAMENSKIE > > > > IPF JAN. 2008 > > > > > > > > -- Definition > > > > > > > > > > > > Anyone know how the term end-stage is typically used in relation to > > this > > > > disease? As in “There is excessive end-stage lung > > disease…†Is this just a > > > > common modifier used in any diagnosis of Pulmonary Fibrosis? > > It’s certainly > > > > not a nice term to see in your report…. > > > > > > > > Bob Dopher IPF 04/07 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2009 Report Share Posted September 23, 2009 beautifully said Peggy Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: DefinitionTo: Breathe-Support Date: Friday, September 18, 2009, 1:03 PM Hi Bob, I happened to ask my Dr this very question.. It is only relevant to each ones disease. We have had some here that died within a few week of Dx. then some that did well for quite a few years after the supposed 3 to 5. It is like when we hit a drop. Which I have become very familiar with.. You KNOW it is advancing. I ask is this end stage that I am experiencing and she said the best way to describe it is that is just the way this disease advances we are never sure how much or how quickly, but yes I am in an advanced stage. Life as I live it is dependent on my husband (poor thing) I use a wheel chair every time we go out. BUT I still can get my own glass of water.. I tried to help put a sheet on my bed yesterday and nearly crooked.. no more of that either.. So it is by trying to do that we learn just how far into this hateful disease we are. There are days I just pray to last until after out Oct. get together. (TRUE) But I know I will be here until I'm not but believe me I will never say done.. can't do anymore I will admit to but I am hanging on. I'm not sure I have answered you the way you wanted. My Dr. will not say end stages--it is just where I am. Live and be happy. So I am. I do think it is time for you to have a heart to heart about using 02. You will feel much better.. This disease is totally indescribable. Don't let numbers and reports ruin your today or tomorrow. God is after all in control. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Anyone know how the term end-stage is typically used in relation to this disease? As in “There is excessive end-stage lung disease…†Is this just a common modifier used in any diagnosis of Pulmonary Fibrosis? It’s certainly not a nice term to see in your report…. Bob Dopher IPF 04/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2009 Report Share Posted September 23, 2009 thanks pink Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." beautifully said Peggy Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- On Fri, 9/18/09, Peggy <pac1773 (AT) cfl (DOT) rr.com> wrote: From: Peggy <pac1773 (AT) cfl (DOT) rr.com>Subject: Re: DefinitionTo: Breathe-Support Date: Friday, September 18, 2009, 1:03 PM Hi Bob, I happened to ask my Dr this very question.. It is only relevant to each ones disease. We have had some here that died within a few week of Dx. then some that did well for quite a few years after the supposed 3 to 5. It is like when we hit a drop. Which I have become very familiar with.. You KNOW it is advancing. I ask is this end stage that I am experiencing and she said the best way to describe it is that is just the way this disease advances we are never sure how much or how quickly, but yes I am in an advanced stage. Life as I live it is dependent on my husband (poor thing) I use a wheel chair every time we go out. BUT I still can get my own glass of water.. I tried to help put a sheet on my bed yesterday and nearly crooked.. no more of that either.. So it is by trying to do that we learn just how far into this hateful disease we are. There are days I just pray to last until after out Oct. get together. (TRUE) But I know I will be here until I'm not but believe me I will never say done.. can't do anymore I will admit to but I am hanging on. I'm not sure I have answered you the way you wanted. My Dr. will not say end stages--it is just where I am. Live and be happy. So I am. I do think it is time for you to have a heart to heart about using 02. You will feel much better.. This disease is totally indescribable. Don't let numbers and reports ruin your today or tomorrow. God is after all in control. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Anyone know how the term end-stage is typically used in relation to this disease? As in “There is excessive end-stage lung disease…” Is this just a common modifier used in any diagnosis of Pulmonary Fibrosis? It’s certainly not a nice term to see in your report…. Bob Dopher IPF 04/07 Quote Link to comment Share on other sites More sharing options...
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