Guest guest Posted October 4, 2009 Report Share Posted October 4, 2009 Hi Bettye and welcome to Breathe Support! My name is Beth and I am the moderator of this board. I hope that together we can help you find the information that you need. The question of prednisone is a loaded one. That particular drug inspires alot of discussion and debate among people with pulmonary fibrosis. Whether or not prednisone will help you in any way is not something that anyone here can answer. I have a form of pulmonary fibrosis called fibrotic nsip. In general pred is not likely to be effective against fibrotic nsip. However it saved my life and stablized my disease over 3 years ago. It's very difficult if not impossible to know for sure in advance whether prednisone will be effective. If there is substantial inflammation or alveolitis associated with your fibrosis there is a good chance that prednisone will help but it's impossible to know for sure. If you don't mind my asking what is the drug that damaged your lungs? Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sun, October 4, 2009 8:44:09 PMSubject: prednisone Has anyone had satisfactory results from taking prednisone? I have IPF probably caused by a medication. My lungs have 20-30% involvement at the present time. I am not on oxygen but will be soon I think. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2009 Report Share Posted October 4, 2009 Welcome Bettye, I can't answer your question On Prednisone 'cos I've refused to take it! Beth has given you good advice....you'll get all sorts of personal opinion from us but in the end YOU have to decide whether to give it a go or not! You must weigh up the Risks/ Benefits for YOU! Keep us posted & tell us more about yourself & your situation. in Australia >> Hi Bettye and welcome to Breathe Support! My name is Beth and I am the moderator of this board. I hope that together we can help you find the information that you need. > > The question of prednisone is a loaded one. That particular drug inspires alot of discussion and debate among people with pulmonary fibrosis.> Whether or not prednisone will help you in any way is not something that anyone here can answer. I have a form of pulmonary fibrosis called fibrotic nsip. In general pred is not likely to be effective against fibrotic nsip. However it saved my life and stablized my disease over 3 years ago. It's very difficult if not impossible to know for sure in advance whether prednisone will be effective. If there is substantial inflammation or alveolitis associated with your fibrosis there is a good chance that prednisone will help but it's impossible to know for sure. > > If you don't mind my asking what is the drug that damaged your lungs?> > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > ________________________________> To: Breathe-Support > Sent: Sun, October 4, 2009 8:44:09 PM> Subject: prednisone> > > Has anyone had satisfactory results from taking prednisone? I have IPF probably caused by a medication. My lungs have 20-30% involvement at the present time. I am not on oxygen but will be soon I think.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2009 Report Share Posted October 4, 2009 Betty Its a much more complicated question that that. Plenty of people with forms of PF other than UIP have good luck with Prednisone. Now when it comes to UIP it is generally not considered to be effective long term even though it is sometimes short term. However, there are well respected doctors who recommend it any way. But you need to find out more information directly applicable to your situation. I'm assuming you have UIP because you used the term, IPF. If they know a med caused it, then its technically not IPF because its no longer Idiopathic. But from an appearance and damage stand point its the same. However, if the cause is known then many of the rules may change. Or it may just be they think the med but truly don't know. I'm not sure what 20-30% involvement means or how your condition has been progressing. But if by 20-30% involvement, you're saying your capacity is still 70-80% then thats quite good. I don't know how you were diagnosed or where but I do recommend a Center of Excellence for a second opinion if you haven't had one. They can also give you another well qualified opinion on treatment. Meanwhile read more, get various opinions and you'll be better able to answer by what is best for you. > > Has anyone had satisfactory results from taking prednisone? I have IPF probably caused by a medication. My lungs have 20-30% involvement at the present time. I am not on oxygen but will be soon I think. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2009 Report Share Posted October 5, 2009 Betty, Do you really think that Macrobid could have caused the PF? Because of an allergy to sulfa drugs, when I get a UTI I have to take Macrcobid! Please tell me how you determined that it may be the cause! Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Bettye Kline wrote: Beth, thanks for the info. I know that this is my decision which is why I am trying to become more educated on the Prednisone issue. It helps to hear the responses. The drug is Nitrofurontoin (macrobid). I took it for years as a suppression drug for bladder infections. BSK From: grangi49 <gina.francis3 (AT) bigpond (DOT) com> To: Breathe-Support Sent: Sunday, October 4, 2009 9:24:53 PM Subject: Re: prednisone Welcome Bettye, I can't answer your question On Prednisone 'cos I've refused to take it! Beth has given you good advice....you' ll get all sorts of personal opinion from us but in the end YOU have to decide whether to give it a go or not! You must weigh up the Risks/ Benefits for YOU! Keep us posted & tell us more about yourself & your situation. in Australia > > Hi Bettye and welcome to Breathe Support! My name is Beth and I am the moderator of this board. I hope that together we can help you find the information that you need. > > The question of prednisone is a loaded one. That particular drug inspires alot of discussion and debate among people with pulmonary fibrosis. > Whether or not prednisone will help you in any way is not something that anyone here can answer. I have a form of pulmonary fibrosis called fibrotic nsip. In general pred is not likely to be effective against fibrotic nsip. However it saved my life and stablized my disease over 3 years ago. It's very difficult if not impossible to know for sure in advance whether prednisone will be effective. If there is substantial inflammation or alveolitis associated with your fibrosis there is a good chance that prednisone will help but it's impossible to know for sure. > > If you don't mind my asking what is the drug that damaged your lungs? > > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > ____________ _________ _________ __ > From: bettyekline24 bettyekline24@ ... > To: Breathe-Support@ yahoogroups. com > Sent: Sun, October 4, 2009 8:44:09 PM > Subject: prednisone > > > Has anyone had satisfactory results from taking prednisone? I have IPF probably caused by a medication. My lungs have 20-30% involvement at the present time. I am not on oxygen but will be soon I think. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2009 Report Share Posted October 5, 2009 To Zion At the time of my diagnosis, that was the only indicator of a cause. My biopsy at NJH said that the patterning was consistant with Macrobid damage. However, the jury which is better known as time will only tell if Macrobid is a contributing factor or a primary factor. My case could still be ideopathic with this as an additional offending agent. Good luck and thanks for your interest. To: Breathe-Support Sent: Monday, October 5, 2009 5:05:26 PMSubject: Re: Re: prednisone Oh and , that should say good drug, not goos drug. I'm clearly too tired to type. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, October 5, 2009 5:53:16 PMSubject: Re: Re: prednisone , Macrobid is in general a goos safe drug. This particular complication occurs very rarely and only when someone is on long term prophylactic treatment with Macrobid to prevent further UTI's. Short term intermittant use of this med is not implicated in this complication. Here is the manufacturers warning: Pulmonary reactions ACUTE, SUBACUTE, OR CHRONIC PULMONARY REACTIONS HAVE BEEN OBSERVED IN PATIENTS TREATED WITH NITROFURANTOIN. IF THESE REACTIONS OCCUR, MACROBID SHOULD BE DISCONTINUED AND APPROPRIATE MEASURES TAKEN. REPORTS HAVE CITED PULMONARY REACTIONS AS A CONTRIBUTING CAUSE OF DEATH. CHRONIC PULMONARY REACTIONS (DIFFUSE INTERSTITIAL PNEUMONITIS OR PULMONARY FIBROSIS, OR BOTH) CAN DEVELOP INSIDIOUSLY. THESE REACTIONS OCCUR RARELY AND GENERALLY IN PATIENTS RECEIVING THERAPY FOR SIX MONTHS OR LONGER. CLOSE MONITORING OF THE PULMONARY CONDITION OF PATIENTS RECEIVING LONG-TERM THERAPY IS WARRANTED AND REQUIRES THAT THE BENEFITS OF THERAPY BE WEIGHED AGAINST POTENTIAL RISKS. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Zion <ljz741 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Mon, October 5, 2009 2:36:07 PMSubject: Re: Re: prednisone Betty, Do you really think that Macrobid could have caused the PF?Because of an allergy to sulfa drugs, when I get a UTI I have to take Macrcobid!Please tell me how you determined that it may be the cause! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Bettye Kline wrote: Beth, thanks for the info. I know that this is my decision which is why I am trying to become more educated on the Prednisone issue. It helps to hear the responses.. The drug is Nitrofurontoin (macrobid). I took it for years as a suppression drug for bladder infections. BSK From: grangi49 <gina.francis3@ bigpond.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, October 4, 2009 9:24:53 PMSubject: Re: prednisone Welcome Bettye, I can't answer your question On Prednisone 'cos I've refused to take it! Beth has given you good advice....you' ll get all sorts of personal opinion from us but in the end YOU have to decide whether to give it a go or not! You must weigh up the Risks/ Benefits for YOU! Keep us posted & tell us more about yourself & your situation. in Australia >> Hi Bettye and welcome to Breathe Support! My name is Beth and I am the moderator of this board. I hope that together we can help you find the information that you need. > > The question of prednisone is a loaded one. That particular drug inspires alot of discussion and debate among people with pulmonary fibrosis.> Whether or not prednisone will help you in any way is not something that anyone here can answer. I have a form of pulmonary fibrosis called fibrotic nsip. In general pred is not likely to be effective against fibrotic nsip. However it saved my life and stablized my disease over 3 years ago. It's very difficult if not impossible to know for sure in advance whether prednisone will be effective. If there is substantial inflammation or alveolitis associated with your fibrosis there is a good chance that prednisone will help but it's impossible to know for sure. > > If you don't mind my asking what is the drug that damaged your lungs?> > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > ____________ _________ _________ __> From: bettyekline24 bettyekline24@ ...> To: Breathe-Support@ yahoogroups. com> Sent: Sun, October 4, 2009 8:44:09 PM> Subject: prednisone> > > Has anyone had satisfactory results from taking prednisone? I have IPF probably caused by a medication. My lungs have 20-30% involvement at the present time. I am not on oxygen but will be soon I think.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2009 Report Share Posted November 29, 2009 Prednisone is supposed to reduce the inflammation in our lungs. And it's the inflammation that causes the coughing, isn't it? C_53_Familial IPF_5/09Washington To: Breathe-Support Sent: Sun, November 29, 2009 1:57:44 PMSubject: Re: Re: scared Thanks for sharing your experience with reduced prednisone. My VA MDP (UofM) told me to go to zero Prednisone, I was at 20 MG and am now at 16mg. If I am successful this will be the second time twelve months that I went off predinose. I went back on because I experienced months of stress with my moldy house and I had no desire to eat. I was on 60 MG in the beginning and I found there were levels like 20 MG or 10 MG that were very hard to get below without feeling very weak. My problem is clearing my lungs each day. I think Prednisone did help reduce phlem (sp). Burns IPF 10/08 From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 14, 2009, 8:01 PM Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups.. com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me.. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ birds> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2009 Report Share Posted November 29, 2009 , Sometimes but definitely not all the time. Coughing can be caused by many things in those of us with all the various kinds of pulmonary fibrosis. I cough when my oxygen level drops as my body makes an effort to pull in more air and raise my O2 level. I cough when I exercise as my stiff, scarred lungs resist expanding to accomodate my body's need for oxygen when I'm working out. I cough when I talk too much. I cough if I change position too fast. All of this has little to nothing to do with inflammation as I don't really have any significant inflammation at this point. All that said, the worst coughing I EVER had was immediately prior to my diagnosis when I had rampant inflammation. The months long treatment with steroids reduced the inflammation and the cough got better but it's never went away completely. Nor would I expect it to. Unfortunately it's part of the fibrosis package. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sun, November 29, 2009 5:29:43 PMSubject: Re: Prednisone Prednisone is supposed to reduce the inflammation in our lungs. And it's the inflammation that causes the coughing, isn't it? C_53_Familial IPF_5/09Washington From: Burns <johnburns999@ att.net>To: Breathe-Support@ yahoogroups. comSent: Sun, November 29, 2009 1:57:44 PMSubject: Re: Re: scared Thanks for sharing your experience with reduced prednisone. My VA MDP (UofM) told me to go to zero Prednisone, I was at 20 MG and am now at 16mg. If I am successful this will be the second time twelve months that I went off predinose. I went back on because I experienced months of stress with my moldy house and I had no desire to eat. I was on 60 MG in the beginning and I found there were levels like 20 MG or 10 MG that were very hard to get below without feeling very weak. My problem is clearing my lungs each day. I think Prednisone did help reduce phlem (sp). Burns IPF 10/08 From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 14, 2009, 8:01 PM Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. . com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me.. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ birds> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2009 Report Share Posted November 29, 2009 Please help..I am on 60 mg been on for 3 week now (1 month ago diagnosed) My cough was constant before diagnosis, when started Prednisone it got 100 % better. Its been 3 weeks and its getting worse and phlegm has more consistensy and dark yellowing color to it. I am also on Imuran. Can it be an infection. Should I contact my doctor?? Any and all input is appreciated Tejeda / 36 / ILD 11-09 / Columbia, SC From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 14, 2009, 8:01 PM Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. . com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me.. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ birds> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2009 Report Share Posted November 29, 2009 , Please call your doctor. Any time you have colored phlegm, you must assume infection. Given the high dose of prednisone along with the Imuran, you are immune supressed and can pick up infections much more easily and you won't necessarily run a fever so it's harder to tell for sure. Please call the doctor asap, you probably need an antibiotic. Hope you feel better soon. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sun, November 29, 2009 6:10:12 PMSubject: Re: Prednisone Please help..I am on 60 mg been on for 3 week now (1 month ago diagnosed) My cough was constant before diagnosis, when started Prednisone it got 100 % better. Its been 3 weeks and its getting worse and phlegm has more consistensy and dark yellowing color to it. I am also on Imuran. Can it be an infection. Should I contact my doctor?? Any and all input is appreciated Tejeda / 36 / ILD 11-09 / Columbia, SC From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 14, 2009, 8:01 PM Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. . com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me.. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ birds> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2009 Report Share Posted November 29, 2009 monica call your doctor the color of your mucus can be an indication of infection Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: PrednisoneTo: Breathe-Support Date: Sunday, November 29, 2009, 6:10 PM Please help..I am on 60 mg been on for 3 week now (1 month ago diagnosed) My cough was constant before diagnosis, when started Prednisone it got 100 % better. Its been 3 weeks and its getting worse and phlegm has more consistensy and dark yellowing color to it. I am also on Imuran. Can it be an infection. Should I contact my doctor?? Any and all input is appreciated Tejeda / 36 / ILD 11-09 / Columbia, SC From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 14, 2009, 8:01 PM Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. . com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me.. I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ birds> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2009 Report Share Posted November 29, 2009 I totally agree, the cough will always be with us to some degree. Even though I'm on prednisone and it helped reduce the inflammation in my lungs and lessened the severity of my coughing attacks. My coughing too is always a constant symptom. That's why I have to use a cough suppressant as needed. C_53_Familial IPF_5/09Washington To: Breathe-Support Sent: Sun, November 29, 2009 3:00:21 PMSubject: Re: Prednisone , Sometimes but definitely not all the time. Coughing can be caused by many things in those of us with all the various kinds of pulmonary fibrosis. I cough when my oxygen level drops as my body makes an effort to pull in more air and raise my O2 level. I cough when I exercise as my stiff, scarred lungs resist expanding to accomodate my body's need for oxygen when I'm working out. I cough when I talk too much. I cough if I change position too fast. All of this has little to nothing to do with inflammation as I don't really have any significant inflammation at this point. All that said, the worst coughing I EVER had was immediately prior to my diagnosis when I had rampant inflammation. The months long treatment with steroids reduced the inflammation and the cough got better but it's never went away completely. Nor would I expect it to. Unfortunately it's part of the fibrosis package. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, November 29, 2009 5:29:43 PMSubject: Re: Prednisone Prednisone is supposed to reduce the inflammation in our lungs. And it's the inflammation that causes the coughing, isn't it? C_53_Familial IPF_5/09Washington From: Burns <johnburns999@ att.net>To: Breathe-Support@ yahoogroups. comSent: Sun, November 29, 2009 1:57:44 PMSubject: Re: Re: scared Thanks for sharing your experience with reduced prednisone. My VA MDP (UofM) told me to go to zero Prednisone, I was at 20 MG and am now at 16mg. If I am successful this will be the second time twelve months that I went off predinose. I went back on because I experienced months of stress with my moldy house and I had no desire to eat. I was on 60 MG in the beginning and I found there were levels like 20 MG or 10 MG that were very hard to get below without feeling very weak. My problem is clearing my lungs each day. I think Prednisone did help reduce phlem (sp). Burns IPF 10/08 From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 14, 2009, 8:01 PM Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups.. . com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me... I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds.. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ birds> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2009 Report Share Posted November 30, 2009 does the cough suppressant really work? if so which one is it? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: PrednisoneTo: Breathe-Support Date: Sunday, November 29, 2009, 10:49 PM I totally agree, the cough will always be with us to some degree. Even though I'm on prednisone and it helped reduce the inflammation in my lungs and lessened the severity of my coughing attacks. My coughing too is always a constant symptom. That's why I have to use a cough suppressant as needed. C_53_Familial IPF_5/09Washington From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, November 29, 2009 3:00:21 PMSubject: Re: Prednisone , Sometimes but definitely not all the time. Coughing can be caused by many things in those of us with all the various kinds of pulmonary fibrosis. I cough when my oxygen level drops as my body makes an effort to pull in more air and raise my O2 level. I cough when I exercise as my stiff, scarred lungs resist expanding to accomodate my body's need for oxygen when I'm working out. I cough when I talk too much. I cough if I change position too fast. All of this has little to nothing to do with inflammation as I don't really have any significant inflammation at this point. All that said, the worst coughing I EVER had was immediately prior to my diagnosis when I had rampant inflammation. The months long treatment with steroids reduced the inflammation and the cough got better but it's never went away completely. Nor would I expect it to. Unfortunately it's part of the fibrosis package. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, November 29, 2009 5:29:43 PMSubject: Re: Prednisone Prednisone is supposed to reduce the inflammation in our lungs. And it's the inflammation that causes the coughing, isn't it? C_53_Familial IPF_5/09Washington From: Burns <johnburns999@ att.net>To: Breathe-Support@ yahoogroups. comSent: Sun, November 29, 2009 1:57:44 PMSubject: Re: Re: scared Thanks for sharing your experience with reduced prednisone. My VA MDP (UofM) told me to go to zero Prednisone, I was at 20 MG and am now at 16mg. If I am successful this will be the second time twelve months that I went off predinose. I went back on because I experienced months of stress with my moldy house and I had no desire to eat. I was on 60 MG in the beginning and I found there were levels like 20 MG or 10 MG that were very hard to get below without feeling very weak. My problem is clearing my lungs each day. I think Prednisone did help reduce phlem (sp). Burns IPF 10/08 From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 14, 2009, 8:01 PM Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups. . . com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me... I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds.. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat....I think thefat is going tokill me.Joyce rudy AZ birds> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2009 Report Share Posted November 30, 2009 Joyce, Yes, it works really well for me, I never have the severe coughing attacks while taking it. It's Guaifen-Codeine cough syrup, my pulmo doc gave me the prescription. Somebody, I forget who now, posted a week or so ago, that you could get this cough medicine OTC by signing for it. Well I checked at one pharmacy here in Washington and they said, no, it has to be by prescription.. C_53_Familial IPF_5/09Washington To: Breathe-Support Sent: Mon, November 30, 2009 5:04:37 AMSubject: Re: Prednisone does the cough suppressant really work? if so which one is it? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Stefani <sfshaner (AT) gmail (DOT) com>Subject: Re: scaredTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 14, 2009, 8:01 PM Hey, I have been there!! I spent 3 years after one pulmo-dude said I had "an interstitial disease" and left it at that. I wasn't on oxygen, but developed coping strategies for my perceived shortness of breath. Then I went to NJ in Denver and learned all kinds of stuff, and got an oximeter as members of this board have recommended. I have since conpleted pulmonary rehab and have a much better idea what I can and cannot do. I have also learned the breathing techniques and coping strategies to best handle "road blocks". I have a light weight luggage carrier I keep in my car for transporting anything and everything on wheels. I have a portable tank with the "demand sensor" delivery system. I have a handicap parking banner for when I need it. I do not always use it, it is just nice to have for those times I need it. I don't hesitate to stop and catch my breath if my sats drop below 88-90. I monitor constantly as I have not yet learned to distinguish fatigue from low oxygen. Hang in there... you will get the hang of it. I think it is cool that you are keeping active with your baked goods for a good cause... And,... I am tipping the scales at 230 (forever trying to lose weight, but always trying to eat smart and healthy). Remember, you can be fit and fat. I know skinny-Minnies that are not fit at all. They also have lousy eating habits. Don't let it scare you... conquer your fears with knowledge!!Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>> Joyce,> I'll lay odds it's not your weight. I think it's your lungs and has little to do with fat. You've lost 15 pounds and you're exercising regularly. You are taking care of yourself.> > You didn't mention whether you checked your sat...what was it? Do you know? Did you try turning your oxygen up a bit? It's frustrating when you set your self a task and then can't complete it because you can't breathe. All of us have had that experience and understand how you are feeling. It sounds as though you were trying to accomplish too much. Carrying baked goods, an incline and two flights of stairs, it would definitely be way too much for me. As hard as it is to adjust your thinking, you've got to do it. You haven't found your new normal yet. You will. You bumped up against a limitation today. That's likely all it is. You will learn to be more realistic when it comes to this kind of stuff but it takes time.> > As to what your friends are saying...are these the same friends who were against you seeking a second opinion at NJH? Please, please, please stop listening to people who don't understand your lung disease. > > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Joyce <BlueLiddy@. ..>> To: Breathe-Support@ yahoogroups.. . . com> Sent: Sat, November 14, 2009 5:29:13 PM> Subject: scared> >  > I went to deliver some baked goods to a bake sale for one of my groups and had to park in the lower lot. Had to walk up a 2% incline and 2 flights of stairs and couldn't make it up the second flight without assistance. I asked for help retrieving the other baked goods and was given it. I knew I couldn't do it again. It scared me... I don't undestand why I couldn't do it. My 02 was on constant and I still co8uldn't make it. I left feeling scared and frustrated and embarrassed and blue...I think this illness is going to kill me. On my last visit to NJH what they didn't rerun was the test where you ride a bike on an incline...my friend said it is becaus I'm fat and my diaphram can't expand but that is bull shit. Everyone says it is because I amfat. But I have lost 15 pounds.. there were fatter people then me going in and out that place. Every one blames it onmy beign fat. I amso sick of that! That is the reason i didn't go to the doctor sooner because I wasw> fat. Everyone says it is because i am fat. Screw them! Anyway, I think I am going todie ofbeing fat.....I think thefat is going tokill me.Joyce rudy AZ birds> Quote Link to comment Share on other sites More sharing options...
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