Guest guest Posted September 18, 2009 Report Share Posted September 18, 2009 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 18, 2009 Report Share Posted September 18, 2009 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, 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." 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 18, 2009 Report Share Posted September 18, 2009 in the beginning, i thought it meant that death was imminent but i am learning that may be incorrect -- it seems that some people can live with end stage for a long time but this is just a guess Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: DefinitionTo: Breathe-Support Date: Friday, September 18, 2009, 11:38 AM 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 18, 2009 Report Share Posted September 18, 2009 Bob I've found it's often used fairly indiscriminately, unfortunately. Some seem to tend toward it from the moment they see the fibrosis while others would never use the term. Reading what you can do and your saturations in the previous post, you certainly don't fit my definition of end stage. I just looked up on medicinenet.com and they indicate that " end-stage " is now often being used to replace terminal. By that definition you're end-stage the moment you get the disease. They said it was considered less despairing. Well, I don't think so. I do suspect in your case though this is how it was used. However, by that definition isn't all life end-stage? I don't know. A frightening term with no meaning of value. Basically says if we live long enough then this is a condition that may ultimately cause our death. > > 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 18, 2009 Report Share Posted September 18, 2009 Bruce, Basically says if we live long enough then this is a conditionthat may ultimately cause our death.I know I'm weird but I actually found that sentence quite funny. Reminds me of a classic Carlin bit about dying from nothing, he wanted to be sure to die from something! Just remember the secret to life......... Keep breathing as long as you can! Dyane Phoenix ipf 02 Meddle Not In The Affairs Of Dragons For You Are CrunchyAnd Taste Good With Ketchup > >> > 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 18, 2009 Report Share Posted September 18, 2009 Dyane Yes, you are weird, but thanks for seeing the humor because I find it that way too. It's a bit of the way I reacted to my diagnosis once I understood it and especially after coming here. I learned I had a disease I might die from sometime if I didn't die from something else sooner. Now, I understand the probably time frame and all about it. But still, there are so many qualifiers and so much that can happen in the mean time. For today, I'm living well. Now, actually you'll find this funny too I think. One of my goals at this point is to make sure that everything outlasts my lungs. I want to get every mile out of them I have and I want to die from their failure, just wearing out, not from some complication. So, I take care of myself. I'm very germ and illness conscious. I have Tamiflu sitting in my medicine cabinet just in case. Something happens, I'm going to get immediate treatment. I get my kidneys monitored to make sure they outlast my lungs. I protect against Pulmonary Hypertension and get checked. I am realistic but accepting. For instance, my Nephrologist and I are always upbeat. Kidneys will outlast lungs so no worry about them. Oh and I liked Carlin's humor. I have always found the statement " died from natural causes " a bit odd. > > > > > > 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 18, 2009 Report Share Posted September 18, 2009 Bruce, Absolutely..my cardiologist did a cath after my last stress test, turned out to be nothing but when I went for the office visit he said the good news was that I was gonna live a long time with my heart....the bad news was I was gonna live a long time with that heart and those lungs...I thought that was a good one. I always joke about what is still working, not what isnt Blood pressure and heart ok, Brain still functioning (most of the time), Kidneys, yep still working with the help of hctz, rest of me....ah not so hot, too bad so sad. Oh well, whatcha gonna do! One day, one hour, one minute, one breath at a time! Dyane Dyane > > > > > > > > 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 18, 2009 Report Share Posted September 18, 2009 Isn't life terminal? Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever 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, September 18, 2009 4:52:01 PMSubject: Re: Definition Bruce,Absolutely.. my cardiologist did a cath after my last stress test, turnedout to be nothing but when I went for the office visit he said the goodnews was that I was gonna live a long time with my heart....the bad newswas I was gonna live a long time with that heart and those lungs...Ithought that was a good one. I always joke about what is still working,not what isnt Blood pressure and heart ok, Brain still functioning(most of the time), Kidneys, yep still working with the help of hctz,rest of me....ah not so hot, too bad so sad. Oh well, whatcha gonna do!One day, one hour, one minute, one breath at a time!DyaneDyane> > > >> > > > 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 18, 2009 Report Share Posted September 18, 2009 Pretty much so last time I looked! LOL Dyane > > > > > > > > > > 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 18, 2009 Report Share Posted September 18, 2009 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 18, 2009 Report Share Posted September 18, 2009 Barbara Seems so far it has been for most people....now i did plan to be the first to live forever.....maybe still will > > > > > > > > > > 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 18, 2009 Report Share Posted September 18, 2009 Peggy: How are you defining UPI? What is the relationship of IPF to UPI? I was only Dxed as having IPF. Is it possible that I both? Burns To: Breathe-Support Sent: Friday, September 18, 2009 1:03:01 PMSubject: Re: Definition 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 18, 2009 Report Share Posted September 18, 2009 Hi Bob,"End-stage" was the term the doctors showed me on the written report of my brother's lung biopsy. The amount of scarring in his left lung was 3/4 and his right lung was 4/4. He died 4 months after diagnosis and 5 days after his lung biopsy. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Friday, September 18, 2009 8:38:42 AMSubject: 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 18, 2009 Report Share Posted September 18, 2009 they are the same thing. There are over 200 different forms of fibrosis, But UIP and IPF are the same. I copied this from a fibrosis, maybe it will help you a little. Interstitial pneumonias are a confusing and frustrating set of diseases both for the treating physician and for the diagnostic pathologist. One source of the confusion has been the lack of overlapping terms that treating physicians and pathologists use. For example, idiopathic pulmonary fibrosis (IPF) is a clinical term describing a slowly progressive, chronic interstitial pneumonia. Since many of the interstitial pneumonias, including UIP, DIP, and NSIP, fall under this category, it is a non-specific term. Most pathologists who are experts in lung pathology use the terms IPF and UIP to mean the same disease process. 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." Peggy: How are you defining UPI? What is the relationship of IPF to UPI? I was only Dxed as having IPF. Is it possible that I both? Burns From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support Sent: Friday, September 18, 2009 1:03:01 PMSubject: Re: Definition 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 18, 2009 Report Share Posted September 18, 2009 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 18, 2009 Report Share Posted September 18, 2009 Dyane and Bruce, I too find myself grateful and focused on the functioning and healthy parts of my body and applauding when I get good test results, such as this I received the other day. IMPRESSION:1. Normal bone mineral density in the Lumbar spine. 2. Normal bone mineral density in the hip.At least my bones are "normal." LOL!C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Friday, September 18, 2009 1:52:01 PMSubject: Re: Definition Bruce, Absolutely.. my cardiologist did a cath after my last stress test, turned out to be nothing but when I went for the office visit he said the good news was that I was gonna live a long time with my heart....the bad news was I was gonna live a long time with that heart and those lungs...I thought that was a good one. I always joke about what is still working, not what isnt Blood pressure and heart ok, Brain still functioning (most of the time), Kidneys, yep still working with the help of hctz, rest of me....ah not so hot, too bad so sad. Oh well, whatcha gonna do! One day, one hour, one minute, one breath at a time! Dyane Dyane > > > > > > > > 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 18, 2009 Report Share Posted September 18, 2009 I like to think life is about living and is everlasting, just different homes. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Friday, September 18, 2009 2:29:36 PMSubject: Re: Re: Definition Isn't life terminal? Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever 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 From: DyaneB <dyane.billings@ ball-mcgraw. com>To: Breathe-Support@ yahoogroups. comSent: Friday, September 18, 2009 4:52:01 PMSubject: Re: Definition Bruce,Absolutely.. my cardiologist did a cath after my last stress test, turnedout to be nothing but when I went for the office visit he said the goodnews was that I was gonna live a long time with my heart....the bad newswas I was gonna live a long time with that heart and those lungs...Ithought that was a good one. I always joke about what is still working,not what isnt Blood pressure and heart ok, Brain still functioning(most of the time), Kidneys, yep still working with the help of hctz,rest of me....ah not so hot, too bad so sad. Oh well, whatcha gonna do!One day, one hour, one minute, one breath at a time!DyaneDyane> > > >> > > > 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 18, 2009 Report Share Posted September 18, 2009 Thanks Peggy. My Pul Drs have said nothing about UPI. To: Breathe-Support Sent: Friday, September 18, 2009 10:16:59 PMSubject: Re: Definition they are the same thing. There are over 200 different forms of fibrosis, But UIP and IPF are the same. I copied this from a fibrosis, maybe it will help you a little. Interstitial pneumonias are a confusing and frustrating set of diseases both for the treating physician and for the diagnostic pathologist. One source of the confusion has been the lack of overlapping terms that treating physicians and pathologists use. For example, idiopathic pulmonary fibrosis (IPF) is a clinical term describing a slowly progressive, chronic interstitial pneumonia. Since many of the interstitial pneumonias, including UIP, DIP, and NSIP, fall under this category, it is a non-specific term. Most pathologists who are experts in lung pathology use the terms IPF and UIP to mean the same disease process. 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." Peggy: How are you defining UPI? What is the relationship of IPF to UPI? I was only Dxed as having IPF. Is it possible that I both? Burns From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Friday, September 18, 2009 1:03:01 PMSubject: Re: Definition 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 18, 2009 Report Share Posted September 18, 2009 , oh come on Abbie Normal is so much more fun! LOL Dyane > > > > > > > > > > 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 Hi Peggy... It's so hard for me to think of you in 'end stage' but I know it is a 'stage' we all go through. I don't do much either. Some days I help making our bed, some days I don't. Some days I do out and some days I don't. I don't seem to be as 'progressed' as I feel... stats are still pretty good and sats hold pretty good in low 90s unless I exert myself but I'm just sooooo tired all the time and hurt all the time. Our apt. is looking cozy and tidy now. Only a few things sitting around that I'm not sure if I want to keep or toss. Love ya friend! MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Definition 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 19, 2009 Report Share Posted September 19, 2009 Jerry... hello friend! I've been scrolling the board and see this email from you about your being 'end stage' 4 years ago. This is the first time I've been aware of your personal 'progression'. I remember when you came on the board. You are always so upbeat and encouraging to others. You amaze me with your accomplishments and I've enjoyed our personal mail. I'm not back on board yet... I scan for awhile, answer a few...usually those I know better but the days of my being on board every day for hours and trying to know everyone seem to be behind me for right now. Maybe we writers gone lurkers give the lurkers a chance to write more, huh? So many newbies that I haven't connected with yet. Take care MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! 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 19, 2009 Report Share Posted September 19, 2009 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 19, 2009 Report Share Posted September 19, 2009 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 19, 2009 Report Share Posted September 19, 2009 Oh Sher it is so good to see you here. I am so sorry you are in so much pain. If I took one of your pain pills I would zonk out for 24 hours. Well I have been thinking about my situation and I have decided to just sit and lay around andbe Queen for the day.. EVERYDAY. I have told to be sure I have grapes and fresh fruit. I do have a LOT of pillows. 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." Hi Peggy... It's so hard for me to think of you in 'end stage' but I know it is a 'stage' we all go through. I don't do much either. Some days I help making our bed, some days I don't. Some days I do out and some days I don't. I don't seem to be as 'progressed' as I feel... stats are still pretty good and sats hold pretty good in low 90s unless I exert myself but I'm just sooooo tired all the time and hurt all the time. Our apt. is looking cozy and tidy now. Only a few things sitting around that I'm not sure if I want to keep or toss. Love ya friend! MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Definition 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 19, 2009 Report Share Posted September 19, 2009 Joyce, Bullseye! That's pretty precisely correct. By the time most of us are diagnosed we are in "end stage" of whatever ILD we may have. By the time there's fibrosis usually there's been ILD for some time. It's a very scary term but it doesn't mean that much in terms of prognosis. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Saturday, September 19, 2009 4:04:52 PMSubject: Re: Re: Definition 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...
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