Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 Tom Yes, you are right to be concerned about her but not much you can do other than advise and let her then make her choices. It could be so many things but without proper diagnosis no one will know. I know a lady who just won't see doctors even when the need is so clear. I worked with a guy who wouldn't get a colonoscopy even knowing one saved my life (mine led many others in the office to get theirs). To me the saddest part of it is that what they fear most and that which they are scared of may often become a self-fulfilling prophecy as a result of their delay. Also, they suffer needlessly. Seeing the doctor didn't give me PF. I know that sounds sort of silly said outloud. Yet, its almost how some think. I know one thing and that is had I not seen the doctor and been put on oxygen, I couldn't have functioned as well as I have the last year. I also know that in this year there probably would have been some significant damage to my other organs. Best case, I would have spent a lot of breathless time. Worst case, collapsing, ER, severe damage, who knows. I would have had a year of sats in the mid to low 80's when just moving slowly around the house and lots of 70's and 60's when doing anything of real exertion. Instead, I've spent it above 90% thanks to oxygen. > > I came across a recent posting on the other autoimmune board I > connect to. The post below came from an Australian that was > directing to posts concerning Prednisone use. This individual has > and is being treated for her AOSD. It immediately raised red flags > in my mind so I sent a response indicating that she should really > follow up with a pulmonary doc. Her " chest thing " has been goining > on for 6 weeks, 2 different antibiotics, no chest xray (let alone a > CT Scan) and the GP indicated that he hears crackles in one lung. > > From her return post she is " afraid " what they might find and is not > going to follow up. She is on MTX and a smoker. > > Not much more I can do, but it just sounds too similar to what I > experienced before being diagnosed with ILD/PF. Should I have been > concerned? > > Tom from PA > > Her 2 postings: > > Thanks . I am on MTX and now have a chest problem which I have > had for about 6 weeks now, and after two lots of antibiotics, it is > still not better. It is slightly better, but I have a feeling it is > from the drugs or the disease-a heavy feeling in my chest and a > constant cough. Also I constantly have thrush in my mouth (plus I got > it down below) and I have NEVER had thrush anywhere prior to this > disease! But apparently prendisone can cause that. Thanks for your > reply. Hope you are well. > > > Hi Tom, Thanks for your concern. I haven't as yet had a chest X-ray, > don't know if I really want one-bit scared of what they might find! > Whatever it is that you have doesn't sound too good. I will look it > up when I get a chance. I was on antibiotics for one & half weeks > which did nothing, so went back to the GP and she gave me other > antibiotics which were 1 a day for 3 days (called ZEDD, I think, and > on reading the leaflet they are for pneumonia as well) and they have > helped, but not cleared it totally. My GP said my right lung had > crackles in it. One problem I have, I smoke so I feel as though until > I give up I can't really complain too much! But I just know I have > never had this type of problem before, even when I have had chest > complaints, which has never been that often. I have bought the > patches (to quit smoking) and have cut down to 2mg cigarettes plus > cutting down a lot, and I am suppose to stop after tonight! Pray I > can do it! I just have to. Thanks again Tom and I will keep you > updated....hope you are doing ok. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 Tom Yes, you are right to be concerned about her but not much you can do other than advise and let her then make her choices. It could be so many things but without proper diagnosis no one will know. I know a lady who just won't see doctors even when the need is so clear. I worked with a guy who wouldn't get a colonoscopy even knowing one saved my life (mine led many others in the office to get theirs). To me the saddest part of it is that what they fear most and that which they are scared of may often become a self-fulfilling prophecy as a result of their delay. Also, they suffer needlessly. Seeing the doctor didn't give me PF. I know that sounds sort of silly said outloud. Yet, its almost how some think. I know one thing and that is had I not seen the doctor and been put on oxygen, I couldn't have functioned as well as I have the last year. I also know that in this year there probably would have been some significant damage to my other organs. Best case, I would have spent a lot of breathless time. Worst case, collapsing, ER, severe damage, who knows. I would have had a year of sats in the mid to low 80's when just moving slowly around the house and lots of 70's and 60's when doing anything of real exertion. Instead, I've spent it above 90% thanks to oxygen. > > I came across a recent posting on the other autoimmune board I > connect to. The post below came from an Australian that was > directing to posts concerning Prednisone use. This individual has > and is being treated for her AOSD. It immediately raised red flags > in my mind so I sent a response indicating that she should really > follow up with a pulmonary doc. Her " chest thing " has been goining > on for 6 weeks, 2 different antibiotics, no chest xray (let alone a > CT Scan) and the GP indicated that he hears crackles in one lung. > > From her return post she is " afraid " what they might find and is not > going to follow up. She is on MTX and a smoker. > > Not much more I can do, but it just sounds too similar to what I > experienced before being diagnosed with ILD/PF. Should I have been > concerned? > > Tom from PA > > Her 2 postings: > > Thanks . I am on MTX and now have a chest problem which I have > had for about 6 weeks now, and after two lots of antibiotics, it is > still not better. It is slightly better, but I have a feeling it is > from the drugs or the disease-a heavy feeling in my chest and a > constant cough. Also I constantly have thrush in my mouth (plus I got > it down below) and I have NEVER had thrush anywhere prior to this > disease! But apparently prendisone can cause that. Thanks for your > reply. Hope you are well. > > > Hi Tom, Thanks for your concern. I haven't as yet had a chest X-ray, > don't know if I really want one-bit scared of what they might find! > Whatever it is that you have doesn't sound too good. I will look it > up when I get a chance. I was on antibiotics for one & half weeks > which did nothing, so went back to the GP and she gave me other > antibiotics which were 1 a day for 3 days (called ZEDD, I think, and > on reading the leaflet they are for pneumonia as well) and they have > helped, but not cleared it totally. My GP said my right lung had > crackles in it. One problem I have, I smoke so I feel as though until > I give up I can't really complain too much! But I just know I have > never had this type of problem before, even when I have had chest > complaints, which has never been that often. I have bought the > patches (to quit smoking) and have cut down to 2mg cigarettes plus > cutting down a lot, and I am suppose to stop after tonight! Pray I > can do it! I just have to. Thanks again Tom and I will keep you > updated....hope you are doing ok. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 Hi Tom, The last phrase on your post "Should I have been concerned?"By offering her, the advice to see a pulmonologist, it means you're already concerned about her. At the same time, I'm not sure because I don't know the girl, as she stated I'm afraid of what they might find...", maybe she's not ready to face the next step, if I don't think about it, it will go away, just thinking I have to see another dr, more tests and the emotions she will go through (sometimes they feel like a roller coaster ride)... Just being there for her, being her friend, supporting her, providing her with information she may ask you etc...in whatever decision she makes, even if you don't like it. Maybe she'll come around, but don't push her into something she's not ready too to face. When I was diagnosed with PF, to me it came as a shock, because I was rushed to ER with high blood pressure, couldn't breath, my pulse was racing and I thought my heart would explode. Was kept overnight, was given pain meds...they did an emergency CT Scan. The next morning, I was told if I wanted to stay in hospital a few days more...I asked three times why, and no answer was given. I said No, because I'm travelling tommorrow by train, I asked a copy of my chart with all the tests that were done including blood tests...on my way home opened the envelope and saw the diagnosis of PF. I looked it up, only thing I would find was you only have 5 years to live! until I found this group and spoke with Leanne on the phone, she's a great person! IrenePF 03/07 Raynaud's Disease 09/07 Opinions Please I came across a recent posting on the other autoimmune board I connect to. The post below came from an Australian that was directing to posts concerning Prednisone use. This individual has and is being treated for her AOSD. It immediately raised red flags in my mind so I sent a response indicating that she should really follow up with a pulmonary doc. Her "chest thing" has been goining on for 6 weeks, 2 different antibiotics, no chest xray (let alone a CT Scan) and the GP indicated that he hears crackles in one lung.From her return post she is "afraid" what they might find and is not going to follow up. She is on MTX and a smoker.Not much more I can do, but it just sounds too similar to what I experienced before being diagnosed with ILD/PF. Should I have been concerned?Tom from PAHer 2 postings:Thanks . I am on MTX and now have a chest problem which I havehad for about 6 weeks now, and after two lots of antibiotics, it isstill not better. It is slightly better, but I have a feeling it isfrom the drugs or the disease-a heavy feeling in my chest and aconstant cough. Also I constantly have thrush in my mouth (plus I gotit down below) and I have NEVER had thrush anywhere prior to thisdisease! But apparently prendisone can cause that. Thanks for yourreply. Hope you are well.Hi Tom, Thanks for your concern. I haven't as yet had a chest X-ray,don't know if I really want one-bit scared of what they might find!Whatever it is that you have doesn't sound too good. I will look itup when I get a chance. I was on antibiotics for one & half weekswhich did nothing, so went back to the GP and she gave me otherantibiotics which were 1 a day for 3 days (called ZEDD, I think, andon reading the leaflet they are for pneumonia as well) and they havehelped, but not cleared it totally. My GP said my right lung hadcrackles in it. One problem I have, I smoke so I feel as though untilI give up I can't really complain too much! But I just know I havenever had this type of problem before, even when I have had chestcomplaints, which has never been that often. I have bought thepatches (to quit smoking) and have cut down to 2mg cigarettes pluscutting down a lot, and I am suppose to stop after tonight! Pray Ican do it! I just have to. Thanks again Tom and I will keep youupdated....hope you are doing ok. Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 Hi Tom, The last phrase on your post "Should I have been concerned?"By offering her, the advice to see a pulmonologist, it means you're already concerned about her. At the same time, I'm not sure because I don't know the girl, as she stated I'm afraid of what they might find...", maybe she's not ready to face the next step, if I don't think about it, it will go away, just thinking I have to see another dr, more tests and the emotions she will go through (sometimes they feel like a roller coaster ride)... Just being there for her, being her friend, supporting her, providing her with information she may ask you etc...in whatever decision she makes, even if you don't like it. Maybe she'll come around, but don't push her into something she's not ready too to face. When I was diagnosed with PF, to me it came as a shock, because I was rushed to ER with high blood pressure, couldn't breath, my pulse was racing and I thought my heart would explode. Was kept overnight, was given pain meds...they did an emergency CT Scan. The next morning, I was told if I wanted to stay in hospital a few days more...I asked three times why, and no answer was given. I said No, because I'm travelling tommorrow by train, I asked a copy of my chart with all the tests that were done including blood tests...on my way home opened the envelope and saw the diagnosis of PF. I looked it up, only thing I would find was you only have 5 years to live! until I found this group and spoke with Leanne on the phone, she's a great person! IrenePF 03/07 Raynaud's Disease 09/07 Opinions Please I came across a recent posting on the other autoimmune board I connect to. The post below came from an Australian that was directing to posts concerning Prednisone use. This individual has and is being treated for her AOSD. It immediately raised red flags in my mind so I sent a response indicating that she should really follow up with a pulmonary doc. Her "chest thing" has been goining on for 6 weeks, 2 different antibiotics, no chest xray (let alone a CT Scan) and the GP indicated that he hears crackles in one lung.From her return post she is "afraid" what they might find and is not going to follow up. She is on MTX and a smoker.Not much more I can do, but it just sounds too similar to what I experienced before being diagnosed with ILD/PF. Should I have been concerned?Tom from PAHer 2 postings:Thanks . I am on MTX and now have a chest problem which I havehad for about 6 weeks now, and after two lots of antibiotics, it isstill not better. It is slightly better, but I have a feeling it isfrom the drugs or the disease-a heavy feeling in my chest and aconstant cough. Also I constantly have thrush in my mouth (plus I gotit down below) and I have NEVER had thrush anywhere prior to thisdisease! But apparently prendisone can cause that. Thanks for yourreply. Hope you are well.Hi Tom, Thanks for your concern. I haven't as yet had a chest X-ray,don't know if I really want one-bit scared of what they might find!Whatever it is that you have doesn't sound too good. I will look itup when I get a chance. I was on antibiotics for one & half weekswhich did nothing, so went back to the GP and she gave me otherantibiotics which were 1 a day for 3 days (called ZEDD, I think, andon reading the leaflet they are for pneumonia as well) and they havehelped, but not cleared it totally. My GP said my right lung hadcrackles in it. One problem I have, I smoke so I feel as though untilI give up I can't really complain too much! But I just know I havenever had this type of problem before, even when I have had chestcomplaints, which has never been that often. I have bought thepatches (to quit smoking) and have cut down to 2mg cigarettes pluscutting down a lot, and I am suppose to stop after tonight! Pray Ican do it! I just have to. Thanks again Tom and I will keep youupdated....hope you are doing ok. Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 Hi Tom, The last phrase on your post "Should I have been concerned?"By offering her, the advice to see a pulmonologist, it means you're already concerned about her. At the same time, I'm not sure because I don't know the girl, as she stated I'm afraid of what they might find...", maybe she's not ready to face the next step, if I don't think about it, it will go away, just thinking I have to see another dr, more tests and the emotions she will go through (sometimes they feel like a roller coaster ride)... Just being there for her, being her friend, supporting her, providing her with information she may ask you etc...in whatever decision she makes, even if you don't like it. Maybe she'll come around, but don't push her into something she's not ready too to face. When I was diagnosed with PF, to me it came as a shock, because I was rushed to ER with high blood pressure, couldn't breath, my pulse was racing and I thought my heart would explode. Was kept overnight, was given pain meds...they did an emergency CT Scan. The next morning, I was told if I wanted to stay in hospital a few days more...I asked three times why, and no answer was given. I said No, because I'm travelling tommorrow by train, I asked a copy of my chart with all the tests that were done including blood tests...on my way home opened the envelope and saw the diagnosis of PF. I looked it up, only thing I would find was you only have 5 years to live! until I found this group and spoke with Leanne on the phone, she's a great person! IrenePF 03/07 Raynaud's Disease 09/07 Opinions Please I came across a recent posting on the other autoimmune board I connect to. The post below came from an Australian that was directing to posts concerning Prednisone use. This individual has and is being treated for her AOSD. It immediately raised red flags in my mind so I sent a response indicating that she should really follow up with a pulmonary doc. Her "chest thing" has been goining on for 6 weeks, 2 different antibiotics, no chest xray (let alone a CT Scan) and the GP indicated that he hears crackles in one lung.From her return post she is "afraid" what they might find and is not going to follow up. She is on MTX and a smoker.Not much more I can do, but it just sounds too similar to what I experienced before being diagnosed with ILD/PF. Should I have been concerned?Tom from PAHer 2 postings:Thanks . I am on MTX and now have a chest problem which I havehad for about 6 weeks now, and after two lots of antibiotics, it isstill not better. It is slightly better, but I have a feeling it isfrom the drugs or the disease-a heavy feeling in my chest and aconstant cough. Also I constantly have thrush in my mouth (plus I gotit down below) and I have NEVER had thrush anywhere prior to thisdisease! But apparently prendisone can cause that. Thanks for yourreply. Hope you are well.Hi Tom, Thanks for your concern. I haven't as yet had a chest X-ray,don't know if I really want one-bit scared of what they might find!Whatever it is that you have doesn't sound too good. I will look itup when I get a chance. I was on antibiotics for one & half weekswhich did nothing, so went back to the GP and she gave me otherantibiotics which were 1 a day for 3 days (called ZEDD, I think, andon reading the leaflet they are for pneumonia as well) and they havehelped, but not cleared it totally. My GP said my right lung hadcrackles in it. One problem I have, I smoke so I feel as though untilI give up I can't really complain too much! But I just know I havenever had this type of problem before, even when I have had chestcomplaints, which has never been that often. I have bought thepatches (to quit smoking) and have cut down to 2mg cigarettes pluscutting down a lot, and I am suppose to stop after tonight! Pray Ican do it! I just have to. Thanks again Tom and I will keep youupdated....hope you are doing ok. Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 Irene and Bruce, Thanks for your kind remarks. That is how I felt. I did the right thing by pointing out my experiences, but you can take a horse to water, but.....kind of thing. I have responded to a couple of her other postings so she does know I am out there and available for her. I do hope it is either, not PF or she does get further attention. But it will need to be her choice. BTW - Has the " Spoon Theory " made the rounds on this board? It relates to any chronic condition. Expecially for those of us who do not " look " sick. http://www.butyoudontlooksick.com/the_spoon_theory/ Tom from PA AOSD 01/04 PF 05/08 Sjogrens 07/08 > > Hi Tom, > The last phrase on your post " Should I have been concerned? " By offering her, the advice to see a pulmonologist, it means you're already concerned about her. > At the same time, I'm not sure because I don't know the girl, as she stated I'm afraid of what they might find... " , maybe she's not ready to face the next step, if I don't think about it, it will go away, just thinking I have to see another dr, more tests and the emotions she will go through (sometimes they feel like a roller coaster ride)... > Just being there for her, being her friend, supporting her, providing her with information she may ask you etc...in whatever decision she makes, even if you don't like it. Maybe she'll come around, but don't push her into something she's not ready too to face. > > When I was diagnosed with PF, to me it came as a shock, because I was rushed to ER with high blood pressure, couldn't breath, my pulse was racing and I thought my heart would explode. Was kept overnight, was given pain meds...they did an emergency CT Scan. The next morning, I was told if I wanted to stay in hospital a few days more...I asked three times why, and no answer was given. I said No, because I'm travelling tommorrow by train, I asked a copy of my chart with all the tests that were done including blood tests...on my way home opened the envelope and saw the diagnosis of PF. > I looked it up, only thing I would find was you only have 5 years to live! until I found this group and spoke with Leanne on the phone, she's a great person! > Irene > PF 03/07 Raynaud's Disease 09/07 > > > Opinions Please > > > I came across a recent posting on the other autoimmune board I > connect to. The post below came from an Australian that was > directing to posts concerning Prednisone use. This individual has > and is being treated for her AOSD. Quote Link to comment Share on other sites More sharing options...
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