Guest guest Posted October 5, 2009 Report Share Posted October 5, 2009 Ditto! I think most of us with PF were diagnosed at a much later stage because of our own reluctance (pride, fear, or denial) to go to the doctor's when we new we should have done so earlier. Almost every chronic disease is much more treatable when caught early. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Sun, October 4, 2009 9:36:34 AMSubject: ER Just want to remind everyone, when you have unusual symptoms such as chest pains or coughing up blood or extreme drop of sats or shortness of breath or anything else like that, get immediate attention. By immediate, I mean RIGHT NOW, not if it doesn't improve in a couple of days. By now you know your systems well enough to know the normal symptoms of your disease. You know when "this feeling is different" or "I'm use to such and such but today its just horrible." Now, I didn't tell Pink Joyce to run her fastest to ER because even though medical care is very important for a potential fracture of a bone, it's not likely a matter of life or death whether she gets attention today or tomorrow. When the question of whether you should go to ER crosses your mind, then I'd say that is already your answer. Better safe than sorry. Force the disease to run its full course but don't let a complication or something else kill you suddenly and when it could be prevented. I'm not just preaching to Merf who just posted here but to all of you and to myself. Why so fervent? Because I know members of this and another forum who delayed and we'll never know if had they not delayed might they still be alive. They were not members whose PF was advanced that far or close to taking them on its own. I also, thankfully, know a couple we've urged to get help including one who immediately called an ambulance and she was admitted, but the doctor told her that had she waited overnight she would have died. Yes, we've all been told what we thought was serious or unusual was nothing and felt silly. But wasn't that what many of us were told before PF was diagnosed. I know I was told I was old and out of shape, but I knew it was more. You also know when what you're experiencing just isn't one of your normal symptoms. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Beth Echoing Beth, I'd complained about shortness of breath and not being able to exercise on the treadmill. It was all being old and out of breath. Only one who insisted there was something being missed was my mental health counselor. Finally, I'm having a full checkup and I tell my Primary that I had three times of severe shortness of breath. Based on what I know now, I was probably in the 60's those times, maybe 50's. Two included lifting and one included carrying something up steps. Well, finally at the end a 6 minute walk. After, he says " that's lower than I expected " and immediately made the referral to the pulmonologist. Oh but it's even worse than that. This appointment where I saw my Primary was in early August 2007, but I'd had CT's in June. They were concerned about the swollen lymph nodes and sent me to an Oncologist regarding them. My Primary, my Gastroenterologist, and my Oncologist looked at the reports. Not one of them saw or said a thing about the fact the radiologist said in two different places in the report than I had Interstitial Lung Disease. It was very clearly stated and there was no " may have " or any qualifier. Obviously that was before I knew to get copies of everything. There are still many thousands who have PF and have not been diagnosed throughout this country and the world. The vast majority of doctors are very poorly informed when it comes to PF. This includes most pulmonologists. Now, the reverse is also happening. Some radiologists and doctors now know the term and are jumping the gun and diagnosing patients as having it off as little as just a chest xray. Only if they choose to find an expert do these patients find out that all they have is scars from prior pneumonia or they have asthma perhaps or something similar. I do consider myself lucky that I now have doctors who are also willing to refer and accept their limitations as well as speak openly about who is and is not expert regarding a disease. I was referred to an appropriate expert in PH when I needed to be checked for it. Again, I'm seeing people being told they have it just off an echocardiogram. You can't diagnose it like that and must have a catheter to verify or refute the echo. I just left my rheumatologist and he wants me to go elsewhere for a second opinion. We went down a list of places including several IPF Centers of Excellence and he was quite bold and firm in saying the ones he thought had good Rheumatology departments and the ones he didn't. So, now we have incorrect diagnosis so prevalent in both directions, missing PF or PH or others and diagnosing off too little information or incorrectly. I know many did put off seeking treatment, but I sure didn't. I was seeing many doctors for many things. I think most of us had at least complained to a doctor about shortness of breath or fatigue. I can't understand why any annual physical wouldn't automatically include a six minute walk. With all the labs and blood pressure and everything else, why don't they at least make a simple check for possible lung disease? > > , > While some of us may have delayed seeking medical treatment for the reasons you talk about (denial, pride, fear) more of us sought help and were treated for things that we don't have. I know I was treated for asthma and multiple bouts of bronchitis for a year and a half before I became so sick that I ended up in the emergency room on Memorial Day of 2006. That's when a ct scan was done and the mystery was solved. > The medical profession is very very ill informed about the symptoms of these diseases. I should add that my sats were never once checked in my primary's office. If they had been I would have been diagnosed much much sooner. > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > ________________________________ > From: worth hope2thend@... > To: Breathe-Support > Sent: Mon, October 5, 2009 10:19:10 PM > Subject: Re: ER > > > Ditto! I think most of us with PF were diagnosed at a much later stage because of our own reluctance (pride, fear, or denial) to go to the doctor's when we new we should have done so earlier. Almost every chronic disease is much more treatable when caught early. > > C_53_Familial IPF_5/09 > Washington > > > > > > ________________________________ > From: Bruce <brucemoreland@ gmail.com> > To: Breathe-Support@ yahoogroups. com > Sent: Sun, October 4, 2009 9:36:34 AM > Subject: ER > > > Just want to remind everyone, when you have unusual symptoms such as > chest pains or coughing up blood or extreme drop of sats or shortness of > breath or anything else like that, get immediate attention. By > immediate, I mean RIGHT NOW, not if it doesn't improve in a couple of > days. By now you know your systems well enough to know the normal > symptoms of your disease. You know when " this feeling is different " or > " I'm use to such and such but today its just horrible. " Now, I didn't > tell Pink Joyce to run her fastest to ER because even though medical > care is very important for a potential fracture of a bone, it's not > likely a matter of life or death whether she gets attention today or > tomorrow. > > When the question of whether you should go to ER crosses your mind, then > I'd say that is already your answer. Better safe than sorry. Force the > disease to run its full course but don't let a complication or something > else kill you suddenly and when it could be prevented. I'm not just > preaching to Merf who just posted here but to all of you and to myself. > Why so fervent? Because I know members of this and another forum who > delayed and we'll never know if had they not delayed might they still be > alive. They were not members whose PF was advanced that far or close to > taking them on its own. I also, thankfully, know a couple we've urged to > get help including one who immediately called an ambulance and she was > admitted, but the doctor told her that had she waited overnight she > would have died. > > Yes, we've all been told what we thought was serious or unusual was > nothing and felt silly. But wasn't that what many of us were told before > PF was diagnosed. I know I was told I was old and out of shape, but I > knew it was more. You also know when what you're experiencing just isn't > one of your normal symptoms. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 If we can stand another horror story… it took about five years for me to be diagnosed. First complaint of tightness in chest and SOB resulted in an angiogram. Turned out I had a healthy heart, therefore no problem. Many other approaches to clearing up cough and SOB during ensuing years by various doctors. Finally, in 2006 I was seen by a pulmonologist who brought me in and showed me the slides from an HRCT. He studied them thoroughly, and noted that I might have a bit of lung cancer, but it was too small to operate. (Although I didn’t know it at the time, the films clearly showed the honeycombing.)The visit ended. One year later, my PCM noted crackles in my lungs so sent me to another pulmonologist with another HRCT. Finally! A pulmo who knew what he was doing! The diagnosis of IPF was made. Finally, I knew what the problem was! There is actually some relief in knowing even though there’s no cure…. Bob Dopher 67 IPF 04/07 From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Bruce Sent: Tuesday, October 06, 2009 1:20 PM To: Breathe-Support Subject: Re: ER Beth Echoing Beth, I'd complained about shortness of breath and not being able to exercise on the treadmill. It was all being old and out of breath. Only one who insisted there was something being missed was my mental health counselor. Finally, I'm having a full checkup and I tell my Primary that I had three times of severe shortness of breath. Based on what I know now, I was probably in the 60's those times, maybe 50's. Two included lifting and one included carrying something up steps. Well, finally at the end a 6 minute walk. After, he says " that's lower than I expected " and immediately made the referral to the pulmonologist. Oh but it's even worse than that. This appointment where I saw my Primary was in early August 2007, but I'd had CT's in June. They were concerned about the swollen lymph nodes and sent me to an Oncologist regarding them. My Primary, my Gastroenterologist, and my Oncologist looked at the reports. Not one of them saw or said a thing about the fact the radiologist said in two different places in the report than I had Interstitial Lung Disease. It was very clearly stated and there was no " may have " or any qualifier. Obviously that was before I knew to get copies of everything. There are still many thousands who have PF and have not been diagnosed throughout this country and the world. The vast majority of doctors are very poorly informed when it comes to PF. This includes most pulmonologists. Now, the reverse is also happening. Some radiologists and doctors now know the term and are jumping the gun and diagnosing patients as having it off as little as just a chest xray. Only if they choose to find an expert do these patients find out that all they have is scars from prior pneumonia or they have asthma perhaps or something similar. I do consider myself lucky that I now have doctors who are also willing to refer and accept their limitations as well as speak openly about who is and is not expert regarding a disease. I was referred to an appropriate expert in PH when I needed to be checked for it. Again, I'm seeing people being told they have it just off an echocardiogram. You can't diagnose it like that and must have a catheter to verify or refute the echo. I just left my rheumatologist and he wants me to go elsewhere for a second opinion. We went down a list of places including several IPF Centers of Excellence and he was quite bold and firm in saying the ones he thought had good Rheumatology departments and the ones he didn't. So, now we have incorrect diagnosis so prevalent in both directions, missing PF or PH or others and diagnosing off too little information or incorrectly. I know many did put off seeking treatment, but I sure didn't. I was seeing many doctors for many things. I think most of us had at least complained to a doctor about shortness of breath or fatigue. I can't understand why any annual physical wouldn't automatically include a six minute walk. With all the labs and blood pressure and everything else, why don't they at least make a simple check for possible lung disease? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Perfect! Any more? I see these stories as one chapter in our book and/or at the very least, a scathing document to be mailed to the American Medical Association AND whatever Pulmonologists Assoc. that might exist AND the PF Coalition AND the PF Foundation to take to Congress and anyone else who can use this info to EDUCATE DOCTORS & MAKE CHANGES. I'm sick of all this frustration, AND I'M NOT GOING TO TAKE IT ANYMORE! I've got VERY similar stories of my own that actually go back 10 YEARS, but I've only been diagnosed for 1 year. Grrrrrrr. I had no idea it was commonplace. So I'm volunteering to collect these stories & edit them & send them to whatever powers that be. If it will overwhelm the board ( & it might), feel free to send them to me privately at ceesnews@.... Just make sure you put PF story or ILD story or something similar in the subject line, so I won't accidentally delete them automatically. (I get a lot of junk email.) Obviously, I won't be able to include every story, but parts of stories could be included. It will also help just to get an idea of numbers. And if anyone has the names & addresses of specific " powers that be " that might be able to affect change, please send them along too. I'm sure there are others I don't know about. (I'm not even sure if the PF Coalition and Foundation are connected or are 2 separate entities.) Cees, S Calif IPF (typo last time) dx 10/08 > > > > > > , > > > While some of us may have delayed seeking medical treatment for the > > reasons you talk about (denial, pride, fear) more of us sought help and > > were treated for things that we don't have. I know I was treated for > > asthma and multiple bouts of bronchitis for a year and a half before I > > became so sick that I ended up in the emergency room on Memorial Day of > > 2006. That's when a ct scan was done and the mystery was solved. > > > The medical profession is very very ill informed about the symptoms of > > these diseases. I should add that my sats were never once checked in my > > primary's office. If they had been I would have been diagnosed much much > > sooner. > > > > > > Beth > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > From: worth hope2thend@ > > > To: Breathe-Support > > > Sent: Mon, October 5, 2009 10:19:10 PM > > > Subject: Re: ER > > > > > > > > > Ditto! I think most of us with PF were diagnosed at a much later > > stage because of our own reluctance (pride, fear, or denial) to go to > > the doctor's when we new we should have done so earlier. Almost every > > chronic disease is much more treatable when caught early. > > > > > > C_53_Familial IPF_5/09 > > > Washington > > > > > > > > > > > > > > > > > > ________________________________ > > > From: Bruce <brucemoreland@ gmail.com> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Sun, October 4, 2009 9:36:34 AM > > > Subject: ER > > > > > > > > > Just want to remind everyone, when you have unusual symptoms such as > > > chest pains or coughing up blood or extreme drop of sats or shortness > > of > > > breath or anything else like that, get immediate attention. By > > > immediate, I mean RIGHT NOW, not if it doesn't improve in a couple of > > > days. By now you know your systems well enough to know the normal > > > symptoms of your disease. You know when " this feeling is different " or > > > " I'm use to such and such but today its just horrible. " Now, I didn't > > > tell Pink Joyce to run her fastest to ER because even though medical > > > care is very important for a potential fracture of a bone, it's not > > > likely a matter of life or death whether she gets attention today or > > > tomorrow. > > > > > > When the question of whether you should go to ER crosses your mind, > > then > > > I'd say that is already your answer. Better safe than sorry. Force the > > > disease to run its full course but don't let a complication or > > something > > > else kill you suddenly and when it could be prevented. I'm not just > > > preaching to Merf who just posted here but to all of you and to > > myself. > > > Why so fervent? Because I know members of this and another forum who > > > delayed and we'll never know if had they not delayed might they still > > be > > > alive. They were not members whose PF was advanced that far or close > > to > > > taking them on its own. I also, thankfully, know a couple we've urged > > to > > > get help including one who immediately called an ambulance and she was > > > admitted, but the doctor told her that had she waited overnight she > > > would have died. > > > > > > Yes, we've all been told what we thought was serious or unusual was > > > nothing and felt silly. But wasn't that what many of us were told > > before > > > PF was diagnosed. I know I was told I was old and out of shape, but I > > > knew it was more. You also know when what you're experiencing just > > isn't > > > one of your normal symptoms. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 After an xray or after a CT? 3 to 6 months? ....please get to a hospital with an ILD center. I would find your diagnosis based on everything you've said to be extremely questionable. Don't carry the burden of a disease until you're certain thats what you have and then get information and advice that is knowledgeable and expert. > > > > > > , > > > While some of us may have delayed seeking medical treatment for the > > reasons you talk about (denial, pride, fear) more of us sought help and > > were treated for things that we don't have. I know I was treated for > > asthma and multiple bouts of bronchitis for a year and a half before I > > became so sick that I ended up in the emergency room on Memorial Day of > > 2006. That's when a ct scan was done and the mystery was solved. > > > The medical profession is very very ill informed about the symptoms of > > these diseases. I should add that my sats were never once checked in my > > primary's office. If they had been I would have been diagnosed much much > > sooner. > > > > > > Beth > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: worth hope2thend@ > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Mon, October 5, 2009 10:19:10 PM > > > Subject: Re: ER > > > > > > > > > Ditto! I think most of us with PF were diagnosed at a much later > > stage because of our own reluctance (pride, fear, or denial) to go to > > the doctor's when we new we should have done so earlier. Almost every > > chronic disease is much more treatable when caught early. > > > > > > C_53_Familial IPF_5/09 > > > Washington > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > From: Bruce <brucemoreland@ gmail.com> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Sun, October 4, 2009 9:36:34 AM > > > Subject: ER > > > > > > > > > Just want to remind everyone, when you have unusual symptoms such as > > > chest pains or coughing up blood or extreme drop of sats or shortness > > of > > > breath or anything else like that, get immediate attention. By > > > immediate, I mean RIGHT NOW, not if it doesn't improve in a couple of > > > days. By now you know your systems well enough to know the normal > > > symptoms of your disease. You know when " this feeling is different " or > > > " I'm use to such and such but today its just horrible. " Now, I didn't > > > tell Pink Joyce to run her fastest to ER because even though medical > > > care is very important for a potential fracture of a bone, it's not > > > likely a matter of life or death whether she gets attention today or > > > tomorrow. > > > > > > When the question of whether you should go to ER crosses your mind, > > then > > > I'd say that is already your answer. Better safe than sorry. Force the > > > disease to run its full course but don't let a complication or > > something > > > else kill you suddenly and when it could be prevented. I'm not just > > > preaching to Merf who just posted here but to all of you and to > > myself. > > > Why so fervent? Because I know members of this and another forum who > > > delayed and we'll never know if had they not delayed might they still > > be > > > alive. They were not members whose PF was advanced that far or close > > to > > > taking them on its own. I also, thankfully, know a couple we've urged > > to > > > get help including one who immediately called an ambulance and she was > > > admitted, but the doctor told her that had she waited overnight she > > > would have died. > > > > > > Yes, we've all been told what we thought was serious or unusual was > > > nothing and felt silly. But wasn't that what many of us were told > > before > > > PF was diagnosed. I know I was told I was old and out of shape, but I > > > knew it was more. You also know when what you're experiencing just > > isn't > > > one of your normal symptoms. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Thanks for the res ponce Bruce.....I had a CT scan done in the ER........they kept me there for 17 hours......(damn) The 3 to 6 months was told to me after an e-ray in the pulmo-dudes office. 2 weeks later he told me the predisone was working and I had PF that responded to the drug. <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: Breathe-Support Sent: Tuesday, October 6, 2009 6:56:33 PMSubject: Re: ER After an xray or after a CT? 3 to 6 months?.....please get to a hospital with an ILD center. I would find yourdiagnosis based on everything you've said to be extremely questionable.Don't carry the burden of a disease until you're certain thats what youhave and then get information and advice that is knowledgeable andexpert.> > >> > > ,> > > While some of us may have delayed seeking medical treatment forthe> > reasons you talk about (denial, pride, fear) more of us sought helpand> > were treated for things that we don't have. I know I was treated for> > asthma and multiple bouts of bronchitis for a year and a half beforeI> > became so sick that I ended up in the emergency room on Memorial Dayof> > 2006. That's when a ct scan was done and the mystery was solved.> > > The medical profession is very very ill informed about thesymptoms of> > these diseases. I should add that my sats were never once checked inmy> > primary's office. If they had been I would have been diagnosed muchmuch> > sooner.> > >> > > Beth> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > >> > >> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: worth hope2thend@> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Mon, October 5, 2009 10:19:10 PM> > > Subject: Re: ER> > >> > >> > > Ditto! I think most of us with PF were diagnosed at a much later> > stage because of our own reluctance (pride, fear, or denial) to goto> > the doctor's when we new we should have done so earlier. Almostevery> > chronic disease is much more treatable when caught early.> > >> > > C_53_Familial IPF_5/09> > > Washington> > >> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Bruce <brucemoreland@ gmail.com>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Sun, October 4, 2009 9:36:34 AM> > > Subject: ER> > >> > >> > > Just want to remind everyone, when you have unusual symptoms suchas> > > chest pains or coughing up blood or extreme drop of sats orshortness> > of> > > breath or anything else like that, get immediate attention. By> > > immediate, I mean RIGHT NOW, not if it doesn't improve in a coupleof> > > days. By now you know your systems well enough to know the normal> > > symptoms of your disease. You know when "this feeling isdifferent" or> > > "I'm use to such and such but today its just horrible." Now, Ididn't> > > tell Pink Joyce to run her fastest to ER because even thoughmedical> > > care is very important for a potential fracture of a bone, it'snot> > > likely a matter of life or death whether she gets attention todayor> > > tomorrow.> > >> > > When the question of whether you should go to ER crosses yourmind,> > then> > > I'd say that is already your answer. Better safe than sorry. Forcethe> > > disease to run its full course but don't let a complication or> > something> > > else kill you suddenly and when it could be prevented. I'm notjust> > > preaching to Merf who just posted here but to all of you and to> > myself.> > > Why so fervent? Because I know members of this and another forumwho> > > delayed and we'll never know if had they not delayed might theystill> > be> > > alive. They were not members whose PF was advanced that far orclose> > to> > > taking them on its own. I also, thankfully, know a couple we'veurged> > to> > > get help including one who immediately called an ambulance and shewas> > > admitted, but the doctor told her that had she waited overnightshe> > > would have died.> > >> > > Yes, we've all been told what we thought was serious or unusualwas> > > nothing and felt silly. But wasn't that what many of us were told> > before> > > PF was diagnosed. I know I was told I was old and out of shape,but I> > > knew it was more. You also know when what you're experiencing just> > isn't> > > one of your normal symptoms.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 He can't tell by an xray. Now, whether you've responded or whether you haven't or whether you ever had PF is I'm afraid an open issue until you get to someone who is expert in the disease. 2 weeks of prednisone changing the entire situation just isn't characteristic of PF. Longer prednisone could clear many forms. Two weeks could clear some types of inflammation in the lungs. Please get to someone at an ILD center or Center of Excellence and find out the full story of your health. To be told 3 to 6 months you'd have to be in a very bad status of PF and have progressed for an extended period of time and probably needed at least 8-10 lpm of oxygen already. You would have been confined mostly to bed and needed hospice or other support. I'm sorry as I really feel for you and the thought of someone telling you that you had 3-6 months and then two weeks later saying you were cured is infuriating. At the least it appears he didn't know what he was talking about on the 3-6 months. > > > > > > > > , > > > > While some of us may have delayed seeking medical treatment for > the > > > reasons you talk about (denial, pride, fear) more of us sought help > and > > > were treated for things that we don't have. I know I was treated for > > > asthma and multiple bouts of bronchitis for a year and a half before > I > > > became so sick that I ended up in the emergency room on Memorial Day > of > > > 2006. That's when a ct scan was done and the mystery was solved. > > > > The medical profession is very very ill informed about the > symptoms of > > > these diseases. I should add that my sats were never once checked in > my > > > primary's office. If they had been I would have been diagnosed much > much > > > sooner. > > > > > > > > Beth > > > > Moderator > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > From: worth hope2thend@ > > > > To: Breathe-Support@ yahoogroups. com > > > > Sent: Mon, October 5, 2009 10:19:10 PM > > > > Subject: Re: ER > > > > > > > > > > > > Ditto! I think most of us with PF were diagnosed at a much later > > > stage because of our own reluctance (pride, fear, or denial) to go > to > > > the doctor's when we new we should have done so earlier. Almost > every > > > chronic disease is much more treatable when caught early. > > > > > > > > C_53_Familial IPF_5/09 > > > > Washington > > > > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > From: Bruce <brucemoreland@ gmail.com> > > > > To: Breathe-Support@ yahoogroups. com > > > > Sent: Sun, October 4, 2009 9:36:34 AM > > > > Subject: ER > > > > > > > > > > > > Just want to remind everyone, when you have unusual symptoms such > as > > > > chest pains or coughing up blood or extreme drop of sats or > shortness > > > of > > > > breath or anything else like that, get immediate attention. By > > > > immediate, I mean RIGHT NOW, not if it doesn't improve in a couple > of > > > > days. By now you know your systems well enough to know the normal > > > > symptoms of your disease. You know when " this feeling is > different " or > > > > " I'm use to such and such but today its just horrible. " Now, I > didn't > > > > tell Pink Joyce to run her fastest to ER because even though > medical > > > > care is very important for a potential fracture of a bone, it's > not > > > > likely a matter of life or death whether she gets attention today > or > > > > tomorrow. > > > > > > > > When the question of whether you should go to ER crosses your > mind, > > > then > > > > I'd say that is already your answer. Better safe than sorry. Force > the > > > > disease to run its full course but don't let a complication or > > > something > > > > else kill you suddenly and when it could be prevented. I'm not > just > > > > preaching to Merf who just posted here but to all of you and to > > > myself. > > > > Why so fervent? Because I know members of this and another forum > who > > > > delayed and we'll never know if had they not delayed might they > still > > > be > > > > alive. They were not members whose PF was advanced that far or > close > > > to > > > > taking them on its own. I also, thankfully, know a couple we've > urged > > > to > > > > get help including one who immediately called an ambulance and she > was > > > > admitted, but the doctor told her that had she waited overnight > she > > > > would have died. > > > > > > > > Yes, we've all been told what we thought was serious or unusual > was > > > > nothing and felt silly. But wasn't that what many of us were told > > > before > > > > PF was diagnosed. I know I was told I was old and out of shape, > but I > > > > knew it was more. You also know when what you're experiencing just > > > isn't > > > > one of your normal symptoms. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Bruce> He showed me the e-rays........looked like someone pulled their finger nails across the right lung and then some on the other. <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: Breathe-Support Sent: Tuesday, October 6, 2009 7:17:27 PMSubject: Re: ER He can't tell by an xray. Now, whether you've responded or whether youhaven't or whether you ever had PF is I'm afraid an open issue until youget to someone who is expert in the disease. 2 weeks of prednisonechanging the entire situation just isn't characteristic of PF. Longerprednisone could clear many forms. Two weeks could clear some types ofinflammation in the lungs. Please get to someone at an ILD center orCenter of Excellence and find out the full story of your health. To betold 3 to 6 months you'd have to be in a very bad status of PF and haveprogressed for an extended period of time and probably needed at least8-10 lpm of oxygen already. You would have been confined mostly to bedand needed hospice or other support.I'm sorry as I really feel for you and the thought of someone tellingyou that you had 3-6 months and then two weeks later saying you werecured is infuriating. At the least it appears he didn't know what he wastalking about on the 3-6 months.> > > >> > > > ,> > > > While some of us may have delayed seeking medical treatment for> the> > > reasons you talk about (denial, pride, fear) more of us soughthelp> and> > > were treated for things that we don't have. I know I was treatedfor> > > asthma and multiple bouts of bronchitis for a year and a halfbefore> I> > > became so sick that I ended up in the emergency room on MemorialDay> of> > > 2006. That's when a ct scan was done and the mystery was solved.> > > > The medical profession is very very ill informed about the> symptoms of> > > these diseases. I should add that my sats were never once checkedin> my> > > primary's office. If they had been I would have been diagnosedmuch> much> > > sooner.> > > >> > > > Beth> > > > Moderator> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > >> > > >> > > >> > > >> > > >> > > >> > > > ____________ _________ _________ __> > > > From: worth hope2thend@> > > > To: Breathe-Support@ yahoogroups. com> > > > Sent: Mon, October 5, 2009 10:19:10 PM> > > > Subject: Re: ER> > > >> > > >> > > > Ditto! I think most of us with PF were diagnosed at a much later> > > stage because of our own reluctance (pride, fear, or denial) to go> to> > > the doctor's when we new we should have done so earlier. Almost> every> > > chronic disease is much more treatable when caught early.> > > >> > > > C_53_Familial IPF_5/09> > > > Washington> > > >> > > >> > > >> > > >> > > >> > > > ____________ _________ _________ __> > > > From: Bruce <brucemoreland@ gmail.com>> > > > To: Breathe-Support@ yahoogroups. com> > > > Sent: Sun, October 4, 2009 9:36:34 AM> > > > Subject: ER> > > >> > > >> > > > Just want to remind everyone, when you have unusual symptomssuch> as> > > > chest pains or coughing up blood or extreme drop of sats or> shortness> > > of> > > > breath or anything else like that, get immediate attention. By> > > > immediate, I mean RIGHT NOW, not if it doesn't improve in acouple> of> > > > days. By now you know your systems well enough to know thenormal> > > > symptoms of your disease. You know when "this feeling is> different" or> > > > "I'm use to such and such but today its just horrible." Now, I> didn't> > > > tell Pink Joyce to run her fastest to ER because even though> medical> > > > care is very important for a potential fracture of a bone, it's> not> > > > likely a matter of life or death whether she gets attentiontoday> or> > > > tomorrow.> > > >> > > > When the question of whether you should go to ER crosses your> mind,> > > then> > > > I'd say that is already your answer. Better safe than sorry.Force> the> > > > disease to run its full course but don't let a complication or> > > something> > > > else kill you suddenly and when it could be prevented. I'm not> just> > > > preaching to Merf who just posted here but to all of you and to> > > myself.> > > > Why so fervent? Because I know members of this and another forum> who> > > > delayed and we'll never know if had they not delayed might they> still> > > be> > > > alive. They were not members whose PF was advanced that far or> close> > > to> > > > taking them on its own. I also, thankfully, know a couple we've> urged> > > to> > > > get help including one who immediately called an ambulance andshe> was> > > > admitted, but the doctor told her that had she waited overnight> she> > > > would have died.> > > >> > > > Yes, we've all been told what we thought was serious or unusual> was> > > > nothing and felt silly. But wasn't that what many of us weretold> > > before> > > > PF was diagnosed. I know I was told I was old and out of shape,> but I> > > > knew it was more. You also know when what you're experiencingjust> > > isn't> > > > one of your normal symptoms.> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Doesn't mean it's PF. Other things can cause the same appearance on an xray. Radiologists who aren't that familiar will have a hard time sometimes differentiating pneumonia from PF. He may turn out to be 100% correct, but an xray is not a generally accepted method of diagnosing PF. I quote directly from the Mayo Clinic site:A complete medical history, physical exam and even a chest X-ray aren't enough to diagnose pulmonary fibrosis, but they can help exclude other conditions.Chest xrays are good for certain things but for others they are basically just indicators that better testing is needed. It's much like an echocardiogram which might indicate you need further testing for PH, but cannot be trusted as a diagnostic tool to say you do or don't have PH. Again, 3-6 months to live followed by a two week cure and diagnosing PF from chest xray are reasons to run as fast as you can away from that doctor and find someone expert in the field. There are not that many experts either with the majority of them either at major teaching hospitals or in some way associated currently or previously with one.> > > > >> > > > > ,> > > > > While some of us may have delayed seeking medical treatment for> > the> > > > reasons you talk about (denial, pride, fear) more of us sought> help> > and> > > > were treated for things that we don't have. I know I was treated> for> > > > asthma and multiple bouts of bronchitis for a year and a half> before> > I> > > > became so sick that I ended up in the emergency room on Memorial> Day> > of> > > > 2006. That's when a ct scan was done and the mystery was solved.> > > > > The medical profession is very very ill informed about the> > symptoms of> > > > these diseases. I should add that my sats were never once checked> in> > my> > > > primary's office. If they had been I would have been diagnosed> much> > much> > > > sooner.> > > > >> > > > > Beth> > > > > Moderator> > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > > ____________ _________ _________ __> > > > > From: worth hope2thend@> > > > > To: Breathe-Support@ yahoogroups. com> > > > > Sent: Mon, October 5, 2009 10:19:10 PM> > > > > Subject: Re: ER> > > > >> > > > >> > > > > Ditto! I think most of us with PF were diagnosed at a much later> > > > stage because of our own reluctance (pride, fear, or denial) to go> > to> > > > the doctor's when we new we should have done so earlier. Almost> > every> > > > chronic disease is much more treatable when caught early.> > > > >> > > > > C_53_Familial IPF_5/09> > > > > Washington> > > > >> > > > >> > > > >> > > > >> > > > >> > > > > ____________ _________ _________ __> > > > > From: Bruce <brucemoreland@ gmail.com>> > > > > To: Breathe-Support@ yahoogroups. com> > > > > Sent: Sun, October 4, 2009 9:36:34 AM> > > > > Subject: ER> > > > >> > > > >> > > > > Just want to remind everyone, when you have unusual symptoms> such> > as> > > > > chest pains or coughing up blood or extreme drop of sats or> > shortness> > > > of> > > > > breath or anything else like that, get immediate attention. By> > > > > immediate, I mean RIGHT NOW, not if it doesn't improve in a> couple> > of> > > > > days. By now you know your systems well enough to know the> normal> > > > > symptoms of your disease. You know when "this feeling is> > different" or> > > > > "I'm use to such and such but today its just horrible." Now, I> > didn't> > > > > tell Pink Joyce to run her fastest to ER because even though> > medical> > > > > care is very important for a potential fracture of a bone, it's> > not> > > > > likely a matter of life or death whether she gets attention> today> > or> > > > > tomorrow.> > > > >> > > > > When the question of whether you should go to ER crosses your> > mind,> > > > then> > > > > I'd say that is already your answer. Better safe than sorry.> Force> > the> > > > > disease to run its full course but don't let a complication or> > > > something> > > > > else kill you suddenly and when it could be prevented. I'm not> > just> > > > > preaching to Merf who just posted here but to all of you and to> > > > myself.> > > > > Why so fervent? Because I know members of this and another forum> > who> > > > > delayed and we'll never know if had they not delayed might they> > still> > > > be> > > > > alive. They were not members whose PF was advanced that far or> > close> > > > to> > > > > taking them on its own. I also, thankfully, know a couple we've> > urged> > > > to> > > > > get help including one who immediately called an ambulance and> she> > was> > > > > admitted, but the doctor told her that had she waited overnight> > she> > > > > would have died.> > > > >> > > > > Yes, we've all been told what we thought was serious or unusual> > was> > > > > nothing and felt silly. But wasn't that what many of us were> told> > > > before> > > > > PF was diagnosed. I know I was told I was old and out of shape,> > but I> > > > > knew it was more. You also know when what you're experiencing> just> > > > isn't> > > > > one of your normal symptoms.> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 , I'm sure the doctor did show you the x-ray. The point that Bruce was trying to make however is an important one. No one can diagnose interstitial lung disease by looking at an x-ray. You can see indications like what's called "ground glass opacity" that would cause a doctor to do further testing....something along the lines of at least a ct scan or better yet an hrct scan (the hr stands for high resolution). But by itself it's just not possible to diagnose ILD from a chest x-ray. Have you looked at www.ipfnet.org? It's a great site to start tracking down a specialist to help determine what exactly is going on with your lungs. If one of those hospitals is not within a dy or two of your home, you can also call closer university medical centers and ask if they have specialists in interstitial lung disease. I promise you it's worth the effort to find someone competant. You owe it to yourself to figure out what's going on in your lungs. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tue, October 6, 2009 9:29:02 PMSubject: Re: Re: ER Bruce> He showed me the e-rays...... ..looked like someone pulled their finger nails across the right lung and then some on the other. <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT> From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, October 6, 2009 7:17:27 PMSubject: Re: ER He can't tell by an xray. Now, whether you've responded or whether youhaven't or whether you ever had PF is I'm afraid an open issue until youget to someone who is expert in the disease. 2 weeks of prednisonechanging the entire situation just isn't characteristic of PF. Longerprednisone could clear many forms. Two weeks could clear some types ofinflammation in the lungs. Please get to someone at an ILD center orCenter of Excellence and find out the full story of your health. To betold 3 to 6 months you'd have to be in a very bad status of PF and haveprogressed for an extended period of time and probably needed at least8-10 lpm of oxygen already. You would have been confined mostly to bedand needed hospice or other support.I'm sorry as I really feel for you and the thought of someone tellingyou that you had 3-6 months and then two weeks later saying you werecured is infuriating. At the least it appears he didn't know what he wastalking about on the 3-6 months.> > > >> > > > ,> > > > While some of us may have delayed seeking medical treatment for> the> > > reasons you talk about (denial, pride, fear) more of us soughthelp> and> > > were treated for things that we don't have. I know I was treatedfor> > > asthma and multiple bouts of bronchitis for a year and a halfbefore> I> > > became so sick that I ended up in the emergency room on MemorialDay> of> > > 2006. That's when a ct scan was done and the mystery was solved.> > > > The medical profession is very very ill informed about the> symptoms of> > > these diseases. I should add that my sats were never once checkedin> my> > > primary's office. If they had been I would have been diagnosedmuch> much> > > sooner.> > > >> > > > Beth> > > > Moderator> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > >> > > >> > > >> > > >> > > >> > > >> > > > ____________ _________ _________ __> > > > From: worth hope2thend@> > > > To: Breathe-Support@ yahoogroups. com> > > > Sent: Mon, October 5, 2009 10:19:10 PM> > > > Subject: Re: ER> > > >> > > >> > > > Ditto! I think most of us with PF were diagnosed at a much later> > > stage because of our own reluctance (pride, fear, or denial) to go> to> > > the doctor's when we new we should have done so earlier. Almost> every> > > chronic disease is much more treatable when caught early.> > > >> > > > C_53_Familial IPF_5/09> > > > Washington> > > >> > > >> > > >> > > >> > > >> > > > ____________ _________ _________ __> > > > From: Bruce <brucemoreland@ gmail.com>> > > > To: Breathe-Support@ yahoogroups. com> > > > Sent: Sun, October 4, 2009 9:36:34 AM> > > > Subject: ER> > > >> > > >> > > > Just want to remind everyone, when you have unusual symptomssuch> as> > > > chest pains or coughing up blood or extreme drop of sats or> shortness> > > of> > > > breath or anything else like that, get immediate attention. By> > > > immediate, I mean RIGHT NOW, not if it doesn't improve in acouple> of> > > > days. By now you know your systems well enough to know thenormal> > > > symptoms of your disease. You know when "this feeling is> different" or> > > > "I'm use to such and such but today its just horrible." Now, I> didn't> > > > tell Pink Joyce to run her fastest to ER because even though> medical> > > > care is very important for a potential fracture of a bone, it's> not> > > > likely a matter of life or death whether she gets attentiontoday> or> > > > tomorrow.> > > >> > > > When the question of whether you should go to ER crosses your> mind,> > > then> > > > I'd say that is already your answer. Better safe than sorry.Force> the> > > > disease to run its full course but don't let a complication or> > > something> > > > else kill you suddenly and when it could be prevented. I'm not> just> > > > preaching to Merf who just posted here but to all of you and to> > > myself.> > > > Why so fervent? Because I know members of this and another forum> who> > > > delayed and we'll never know if had they not delayed might they> still> > > be> > > > alive. They were not members whose PF was advanced that far or> close> > > to> > > > taking them on its own. I also, thankfully, know a couple we've> urged> > > to> > > > get help including one who immediately called an ambulance andshe> was> > > > admitted, but the doctor told her that had she waited overnight> she> > > > would have died.> > > >> > > > Yes, we've all been told what we thought was serious or unusual> was> > > > nothing and felt silly. But wasn't that what many of us weretold> > > before> > > > PF was diagnosed. I know I was told I was old and out of shape,> but I> > > > knew it was more. You also know when what you're experiencingjust> > > isn't> > > > one of your normal symptoms.> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2009 Report Share Posted October 7, 2009 Sorry Joyce, you're absolute right that it isn't always our own fault that we don't get the needed treatment as early as possible. Sometimes we are trying to get help and the medical system fails us. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Tue, October 6, 2009 5:46:51 AMSubject: Re: ER for several years i was seeing a family doctor and cardiologist- - thinking problems were heart related due to family history shortness of breath when walking up hill for many years -- thought it was from being out of shape, overweight, and cardiac excessive tiredness -- one summer was really bad -- went to doc who referred me to cardiologist when SOB just walking around the house started -- went to er twice -- ruled out cardiac issues first er visit said maybe bronchitis -- gave a prescription for albuterol -- what a waste -- didn't do anything two weeks later at second er (different location) , cardiologist came to meet me there and said maybe asthma --referred me to pulmonary who made the diagnosis after 3 or 4 visits there is a lady in my neighborhood who complained about a cough for about 2 years -- went to a variety of doctors - was treated for a varitey of "lung" diseases -- i forget the whole story -- until someone figured out that it was some form of ILD about 2 years ago, she found out about some kind of hernia, had surgery for it, and cough \decreased significantly haven't seen her for awhile so don't know what is happening with her now Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: ERTo: Breathe-Support@ yahoogroups. comDate: Monday, October 5, 2009, 10:19 PM Ditto! I think most of us with PF were diagnosed at a much later stage because of our own reluctance (pride, fear, or denial) to go to the doctor's when we new we should have done so earlier. Almost every chronic disease is much more treatable when caught early. C_53_Familial IPF_5/09Washington From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sun, October 4, 2009 9:36:34 AMSubject: ER Just want to remind everyone, when you have unusual symptoms such aschest pains or coughing up blood or extreme drop of sats or shortness ofbreath or anything else like that, get immediate attention. Byimmediate, I mean RIGHT NOW, not if it doesn't improve in a couple ofdays. By now you know your systems well enough to know the normalsymptoms of your disease. You know when "this feeling is different" or"I'm use to such and such but today its just horrible." Now, I didn'ttell Pink Joyce to run her fastest to ER because even though medicalcare is very important for a potential fracture of a bone, it's notlikely a matter of life or death whether she gets attention today ortomorrow.When the question of whether you should go to ER crosses your mind, thenI'd say that is already your answer. Better safe than sorry. Force thedisease to run its full course but don't let a complication or somethingelse kill you suddenly and when it could be prevented. I'm not justpreaching to Merf who just posted here but to all of you and to myself.Why so fervent? Because I know members of this and another forum whodelayed and we'll never know if had they not delayed might they still bealive. They were not members whose PF was advanced that far or close totaking them on its own. I also, thankfully, know a couple we've urged toget help including one who immediately called an ambulance and she wasadmitted, but the doctor told her that had she waited overnight shewould have died.Yes, we've all been told what we thought was serious or unusual wasnothing and felt silly. But wasn't that what many of us were told beforePF was diagnosed. I know I was told I was old and out of shape, but Iknew it was more. You also know when what you're experiencing just isn'tone of your normal symptoms. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2009 Report Share Posted October 7, 2009 and Joyce, I was pretty far along with IPF when I was diagnosed and it didn't make one bit of difference as far as treatment goes.I don't understand getting upset because of non treatment when there isn't any.. I did have pneumonia (mild) and was put on prednisone.I won't go into my feelings about it. my Dr. does know how I feel (along with all the older members here).. It did NOTHING for the IPF. but did take care of the infection. It took me a year to come off of it.. ON AND ON AND ON....So unless you have a form of PF that has a known treatment... LIVE and don't be your disease, It is something we have, not US.I am just so mad at this monster of a disease I want to scream. I do not know how Bruce and some others can spend so much timereading about it and getting so many other opinions.So much time and effort--for what-- to hear You have ILD. to each his own.. I guess that about covers my rant for today.. Bruce honey you just keep on keepin on. So many do enjoy your postings, I worry you need to get out andabout more.. ??? there for SEE YA IN CHATTANOOGA... 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." Sorry Joyce, you're absolute right that it isn't always our own fault that we don't get the needed treatment as early as possible. Sometimes we are trying to get help and the medical system fails us. C_53_Familial IPF_5/09WashingtonFrom: Joyce T Rosenberg <pinkrockybeach (AT) yahoo (DOT) com>To: Breathe-Support Sent: Tue, October 6, 2009 5:46:51 AMSubject: Re: ER for several years i was seeing a family doctor and cardiologist- - thinking problems were heart related due to family history shortness of breath when walking up hill for many years -- thought it was from being out of shape, overweight, and cardiac excessive tiredness -- one summer was really bad -- went to doc who referred me to cardiologist when SOB just walking around the house started -- went to er twice -- ruled out cardiac issues first er visit said maybe bronchitis -- gave a prescription for albuterol -- what a waste -- didn't do anything two weeks later at second er (different location) , cardiologist came to meet me there and said maybe asthma --referred me to pulmonary who made the diagnosis after 3 or 4 visits there is a lady in my neighborhood who complained about a cough for about 2 years -- went to a variety of doctors - was treated for a varitey of "lung" diseases -- i forget the whole story -- until someone figured out that it was some form of ILD about 2 years ago, she found out about some kind of hernia, had surgery for it, and cough \decreased significantly haven't seen her for awhile so don't know what is happening with her now Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: ERTo: Breathe-Support@ yahoogroups. comDate: Monday, October 5, 2009, 10:19 PM Ditto! I think most of us with PF were diagnosed at a much later stage because of our own reluctance (pride, fear, or denial) to go to the doctor's when we new we should have done so earlier. Almost every chronic disease is much more treatable when caught early. C_53_Familial IPF_5/09Washington From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sun, October 4, 2009 9:36:34 AMSubject: ER Just want to remind everyone, when you have unusual symptoms such aschest pains or coughing up blood or extreme drop of sats or shortness ofbreath or anything else like that, get immediate attention. Byimmediate, I mean RIGHT NOW, not if it doesn't improve in a couple ofdays. By now you know your systems well enough to know the normalsymptoms of your disease. You know when "this feeling is different" or"I'm use to such and such but today its just horrible." Now, I didn'ttell Pink Joyce to run her fastest to ER because even though medicalcare is very important for a potential fracture of a bone, it's notlikely a matter of life or death whether she gets attention today ortomorrow.When the question of whether you should go to ER crosses your mind, thenI'd say that is already your answer. Better safe than sorry. Force thedisease to run its full course but don't let a complication or somethingelse kill you suddenly and when it could be prevented. I'm not justpreaching to Merf who just posted here but to all of you and to myself.Why so fervent? Because I know members of this and another forum whodelayed and we'll never know if had they not delayed might they still bealive. They were not members whose PF was advanced that far or close totaking them on its own. I also, thankfully, know a couple we've urged toget help including one who immediately called an ambulance and she wasadmitted, but the doctor told her that had she waited overnight shewould have died.Yes, we've all been told what we thought was serious or unusual wasnothing and felt silly. But wasn't that what many of us were told beforePF was diagnosed. I know I was told I was old and out of shape, but Iknew it was more. You also know when what you're experiencing just isn'tone of your normal symptoms. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2009 Report Share Posted October 7, 2009 Peggy Don't worry....I get out every day. I've been out most of today until I just got home and did 40 minutes on the treadmill. Now, I'm sitting here smiling at you. Sorry, not likely to see me in Chattanooga unless I'm able to go at the last minute. My ex mother-in-law is still in the rehab and nursing center. When she gets out ultimately she may spend two weeks here before going home or elsewhere. So, I'm sort of committed to a two week period that I don't know when will come. It was suppose to be in August based on the surgeon's original prediction before her open heart surgery. I read fast, Peggy. I spend the time for two reasons. First, and foremost, to try to help others be informed and understand. I pretty much know my situation with UIP although my rheumatology issues remain very much in the air. Second, I do continue to check out things as I have additional findings or tests. But doctors or research never come ahead of me getting out and enjoying life. I get out every day and I schedule doctors around anything else I have planned. For instance, I had a rheumatologist yesterday at 10, so I went there, then to lunch. I came home. Then I went out again last night to dinner with . Now, the additional opinions I'm getting are not on UIP/IPF. I have many other conditions, some known and probably at least one unknown, some perhaps connected to the IPF and some not. I generally crowd a lot of appointments into August when its too hot to do anything here and it forces me to get out. I've said this before and will repeat it. My two years since diagnosis have been two of the best years of my life. There are many different forms of ILD and some are treatable. There are also many who have related connective tissue diseases which are treatable. Pulmonary Hypertension is treatable. GERD is manageable or at least we attempt to. Hypothyroidism, which many of us have, is treatable. Sleep issues are manageable. Eyes and ears can be monitored. Mental health is manageable. Kidney disease merits monitoring as do swollen lymph nodes and as follow up on colon tumors does. Suspected cancers merit further testing to eliminate them. Taking care of all the other things helps allow me to live life to the fullest in spite of IPF. > > From: worth hope2thend (AT) yahoo (DOT) com> > Subject: Re: ER > To: Breathe-Support@ yahoogroups. com > Date: Monday, October 5, 2009, 10:19 PM > > > Ditto! I think most of us with PF were diagnosed at a much later > stage because of our own reluctance (pride, fear, or denial) to go to > the doctor's when we new we should have done so earlier. Almost every > chronic disease is much more treatable when caught early. > > C_53_Familial IPF_5/09 > Washington > > > From: Bruce <brucemoreland@ gmail.com> > To: Breathe-Support@ yahoogroups. com > Sent: Sun, October 4, 2009 9:36:34 AM > Subject: ER > > > Just want to remind everyone, when you have unusual symptoms such as > chest pains or coughing up blood or extreme drop of sats or shortness of > breath or anything else like that, get immediate attention. By > immediate, I mean RIGHT NOW, not if it doesn't improve in a couple of > days. By now you know your systems well enough to know the normal > symptoms of your disease. You know when " this feeling is different " or > " I'm use to such and such but today its just horrible. " Now, I didn't > tell Pink Joyce to run her fastest to ER because even though medical > care is very important for a potential fracture of a bone, it's not > likely a matter of life or death whether she gets attention today or > tomorrow. > > When the question of whether you should go to ER crosses your mind, then > I'd say that is already your answer. Better safe than sorry. Force the > disease to run its full course but don't let a complication or something > else kill you suddenly and when it could be prevented. I'm not just > preaching to Merf who just posted here but to all of you and to myself. > Why so fervent? Because I know members of this and another forum who > delayed and we'll never know if had they not delayed might they still be > alive. They were not members whose PF was advanced that far or close to > taking them on its own. I also, thankfully, know a couple we've urged to > get help including one who immediately called an ambulance and she was > admitted, but the doctor told her that had she waited overnight she > would have died. > > Yes, we've all been told what we thought was serious or unusual was > nothing and felt silly. But wasn't that what many of us were told before > PF was diagnosed. I know I was told I was old and out of shape, but I > knew it was more. You also know when what you're experiencing just isn't > one of your normal symptoms. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2009 Report Share Posted October 7, 2009 peggy i agree -- learning about all of this stuff reaches a saturation point -- and too many details i really don't care which ild i have i am glad mine is responsive to meds it can be managed since there is no cure, the next step for some is transplant and of course there can be all sorts of complications with that if i reach that point i plan on going for a transplant -- hopefully it can be put off for a long time one of the best things about this group is that we learn how to live with the disease Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: ERTo: Breathe-Support Date: Wednesday, October 7, 2009, 12:05 PM and Joyce, I was pretty far along with IPF when I was diagnosed and it didn't make one bit of difference as far as treatment goes. I don't understand getting upset because of non treatment when there isn't any.. I did have pneumonia (mild) and was put on prednisone. I won't go into my feelings about it. my Dr. does know how I feel (along with all the older members here).. It did NOTHING for the IPF. but did take care of the infection. It took me a year to come off of it.. ON AND ON AND ON.... So unless you have a form of PF that has a known treatment... LIVE and don't be your disease, It is something we have, not US. I am just so mad at this monster of a disease I want to scream. I do not know how Bruce and some others can spend so much time reading about it and getting so many other opinions.So much time and effort--for what-- to hear You have ILD. to each his own.. I guess that about covers my rant for today.. Bruce honey you just keep on keepin on. So many do enjoy your postings, I worry you need to get out and about more.. ??? there for SEE YA IN CHATTANOOGA. .. 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." Sorry Joyce, you're absolute right that it isn't always our own fault that we don't get the needed treatment as early as possible. Sometimes we are trying to get help and the medical system fails us. C_53_Familial IPF_5/09Washington From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Tue, October 6, 2009 5:46:51 AMSubject: Re: ER for several years i was seeing a family doctor and cardiologist- - thinking problems were heart related due to family history shortness of breath when walking up hill for many years -- thought it was from being out of shape, overweight, and cardiac excessive tiredness -- one summer was really bad -- went to doc who referred me to cardiologist when SOB just walking around the house started -- went to er twice -- ruled out cardiac issues first er visit said maybe bronchitis -- gave a prescription for albuterol -- what a waste -- didn't do anything two weeks later at second er (different location) , cardiologist came to meet me there and said maybe asthma --referred me to pulmonary who made the diagnosis after 3 or 4 visits there is a lady in my neighborhood who complained about a cough for about 2 years -- went to a variety of doctors - was treated for a varitey of "lung" diseases -- i forget the whole story -- until someone figured out that it was some form of ILD about 2 years ago, she found out about some kind of hernia, had surgery for it, and cough \decreased significantly haven't seen her for awhile so don't know what is happening with her now Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: ERTo: Breathe-Support@ yahoogroups. comDate: Monday, October 5, 2009, 10:19 PM Ditto! I think most of us with PF were diagnosed at a much later stage because of our own reluctance (pride, fear, or denial) to go to the doctor's when we new we should have done so earlier. Almost every chronic disease is much more treatable when caught early. C_53_Familial IPF_5/09Washington From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sun, October 4, 2009 9:36:34 AMSubject: ER Just want to remind everyone, when you have unusual symptoms such aschest pains or coughing up blood or extreme drop of sats or shortness ofbreath or anything else like that, get immediate attention. Byimmediate, I mean RIGHT NOW, not if it doesn't improve in a couple ofdays. By now you know your systems well enough to know the normalsymptoms of your disease. You know when "this feeling is different" or"I'm use to such and such but today its just horrible." Now, I didn'ttell Pink Joyce to run her fastest to ER because even though medicalcare is very important for a potential fracture of a bone, it's notlikely a matter of life or death whether she gets attention today ortomorrow.When the question of whether you should go to ER crosses your mind, thenI'd say that is already your answer. Better safe than sorry. Force thedisease to run its full course but don't let a complication or somethingelse kill you suddenly and when it could be prevented. I'm not justpreaching to Merf who just posted here but to all of you and to myself.Why so fervent? Because I know members of this and another forum whodelayed and we'll never know if had they not delayed might they still bealive. They were not members whose PF was advanced that far or close totaking them on its own. I also, thankfully, know a couple we've urged toget help including one who immediately called an ambulance and she wasadmitted, but the doctor told her that had she waited overnight shewould have died.Yes, we've all been told what we thought was serious or unusual wasnothing and felt silly. But wasn't that what many of us were told beforePF was diagnosed. I know I was told I was old and out of shape, but Iknew it was more. You also know when what you're experiencing just isn'tone of your normal symptoms. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2009 Report Share Posted October 7, 2009 Joyce, You say you were responsive to meds and that is why you came off the transplant list. I think you told me you were on Cellcept, Do you mind if I ask? How much Cellcept for how long? What was the good response? Did you pulmonary function improve, etc. I and anxious to know because I have been on Cellcept for a year this month, and have not had any improvement in my tests, CT, etc. and just wondering where I will go from here. There was mention once of Rituximab (?) but I have not found anything positive about that drug. Thanks, Dorothy Reinecke-Fayetteville, GA 66-VATS 7/05 - UIP Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†To: Breathe-Support Sent: Wednesday, October 7, 2009 2:47:31 PMSubject: Re: ER peggy i agree -- learning about all of this stuff reaches a saturation point -- and too many details i really don't care which ild i have i am glad mine is responsive to meds it can be managed since there is no cure, the next step for some is transplant and of course there can be all sorts of complications with that if i reach that point i plan on going for a transplant -- hopefully it can be put off for a long time one of the best things about this group is that we learn how to live with the disease Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: ERTo: Breathe-Support@ yahoogroups. comDate: Monday, October 5, 2009, 10:19 PM Ditto! I think most of us with PF were diagnosed at a much later stage because of our own reluctance (pride, fear, or denial) to go to the doctor's when we new we should have done so earlier. Almost every chronic disease is much more treatable when caught early. C_53_Familial IPF_5/09Washington From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sun, October 4, 2009 9:36:34 AMSubject: ER Just want to remind everyone, when you have unusual symptoms such aschest pains or coughing up blood or extreme drop of sats or shortness ofbreath or anything else like that, get immediate attention. Byimmediate, I mean RIGHT NOW, not if it doesn't improve in a couple ofdays. By now you know your systems well enough to know the normalsymptoms of your disease. You know when "this feeling is different" or"I'm use to such and such but today its just horrible." Now, I didn'ttell Pink Joyce to run her fastest to ER because even though medicalcare is very important for a potential fracture of a bone, it's notlikely a matter of life or death whether she gets attention today ortomorrow..When the question of whether you should go to ER crosses your mind, thenI'd say that is already your answer. Better safe than sorry. Force thedisease to run its full course but don't let a complication or somethingelse kill you suddenly and when it could be prevented. I'm not justpreaching to Merf who just posted here but to all of you and to myself.Why so fervent? Because I know members of this and another forum whodelayed and we'll never know if had they not delayed might they still bealive. They were not members whose PF was advanced that far or close totaking them on its own. I also, thankfully, know a couple we've urged toget help including one who immediately called an ambulance and she wasadmitted, but the doctor told her that had she waited overnight shewould have died.Yes, we've all been told what we thought was serious or unusual wasnothing and felt silly. But wasn't that what many of us were told beforePF was diagnosed. I know I was told I was old and out of shape, but Iknew it was more. You also know when what you're experiencing just isn'tone of your normal symptoms. Quote Link to comment Share on other sites More sharing options...
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