Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 Hi , I would check out the CF clinic on a visit to the area. Just my opinion. I'll never move again, probably. -Lenora >We are thinking of moving in the next year or so to be closer to >family. I am very concerned about moving, changing jobs and the >question of health coverage. We would like to move to Ky, I know >there is a family on the list from ky. I would love any adivce on >how others have made big moves. Before it would never have been a >question i would just up and moveed but with Noah now it makes it >much scarier. I would like to move while he is younger and doing >well healthwise. So any advice would be much appreciated. > > mom to Breanna 10.5 wocf and Noah 2.5 wcf > > >PLEASE do not post religious emails to the list. > > >------------------------------------------- > > >The opinions and information exchanged on this list should >IN NO WAY >be construed as medical advice. > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > >-------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 Hi , I would check out the CF clinic on a visit to the area. Just my opinion. I'll never move again, probably. -Lenora >We are thinking of moving in the next year or so to be closer to >family. I am very concerned about moving, changing jobs and the >question of health coverage. We would like to move to Ky, I know >there is a family on the list from ky. I would love any adivce on >how others have made big moves. Before it would never have been a >question i would just up and moveed but with Noah now it makes it >much scarier. I would like to move while he is younger and doing >well healthwise. So any advice would be much appreciated. > > mom to Breanna 10.5 wocf and Noah 2.5 wcf > > >PLEASE do not post religious emails to the list. > > >------------------------------------------- > > >The opinions and information exchanged on this list should >IN NO WAY >be construed as medical advice. > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > >-------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Hi , from what I have learned on these lists it's important to check the health insurance of the new company BEFORE you quit your current job. Peace Torsten, dad of Fiona 5wcf e-mail: torstenkrafft@... advice needed > We are thinking of moving in the next year or so to be closer to > family. I am very concerned about moving, changing jobs and the > question of health coverage. We would like to move to Ky, I know > there is a family on the list from ky. I would love any adivce on > how others have made big moves. Before it would never have been a > question i would just up and moveed but with Noah now it makes it > much scarier. I would like to move while he is younger and doing > well healthwise. So any advice would be much appreciated. > > mom to Breanna 10.5 wocf and Noah 2.5 wcf > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2009 Report Share Posted June 3, 2009 In March of this year I was diagnosed with pulmonary hypertension based on an echocardiogram. I was referred to a local pulmonologist for follow-up. This physician felt that the cause of the PH was sleep apnea and so scheduled a sleep study. When the results came back negative he rescheduled the echocardiogram and a repeat CT of the lung, the initial done during a hospitalization in March with dx of pneumonia and influenza. Based on the CT scan being almost identical to the one performed 2 months earlier this physician then scheduled me for a bronchoscopy. This was done just a week ago. In reviewing the results he noted an elevation of leukocytes and neutrophils in the bronchial wash, and the cytology report and the pathology report both indicated chronic inflammation. He feels that this indicates pulmonary fibrosis. He has started me on Prednisone with scheduled repeat CT and pulmonary function test the end of the month. If no change he plans on doing an open biopsy. Does is conclusions sound valid? Is he taking the right approach? From my reading I know that PF can lead to PH, so I know that I still need to have a right heart cath to confirm PH. After one week on prednisone I am not noticing any changes, am I being to impatient? Craig Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2009 Report Share Posted June 3, 2009 Craig If you haven't had a walk test then how was it determined you don't need oxygen when walking? I can't imagine that you need it at night and don't need it for activity. Pulmonary Hypertension is something to be concerned about as there are medications to address it. Yes, the lack of oxygen might be causing it. But, then I don't see that having been addressed either. All that was done was just popping you on prednisone. Now, the inflammation probably does call for prednisone but I'm sorry, I have too many questions regarding things that are standard PF and PH protocol and haven't been done. I would strongly encourage you, since you're in Colorado, to make a trip to National Jewish and get another opinion and more thorough evaluation and education. As to humidity, some of us love it and some of us hate it. I guess its a matter of what comes with it too. One other comment. If you don't have one, order an oximeter tomorrow. You can get them for as little as $65 and its the only way to know what is happening under various conditions. Many members have gotten this one which is FDA approved. http://portablenebs.com/choiceoximeter.htm > > > > In March of this year I was diagnosed with pulmonary hypertension > based on an echocardiogram. I was referred to a local pulmonologist for > follow-up.. This physician felt that the cause of the PH was sleep > apnea and so scheduled a sleep study. When the results came back > negative he rescheduled the echocardiogram and a repeat CT of the lung, > the initial done during a hospitalization in March with dx of pneumonia > and influenza. > > Based on the CT scan being almost identical to the one performed 2 > months earlier this physician then scheduled me for a bronchoscopy. > This was done just a week ago. In reviewing the results he noted an > elevation of leukocytes and neutrophils in the bronchial wash, and the > cytology report and the pathology report both indicated chronic > inflammation. He feels that this indicates pulmonary fibrosis. He has > started me on Prednisone with scheduled repeat CT and pulmonary function > test the end of the month. If no change he plans on doing an open > biopsy. Does is conclusions sound valid? Is he taking the right > approach? From my reading I know that PF can lead to PH, so I know > that I still need to have a right heart cath to confirm PH. After one > week on prednisone I am not noticing any changes, am I being to > impatient? > > > > > > Craig > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2009 Report Share Posted June 3, 2009 Craig If you haven't had a walk test then how was it determined you don't need oxygen when walking? I can't imagine that you need it at night and don't need it for activity. Pulmonary Hypertension is something to be concerned about as there are medications to address it. Yes, the lack of oxygen might be causing it. But, then I don't see that having been addressed either. All that was done was just popping you on prednisone. Now, the inflammation probably does call for prednisone but I'm sorry, I have too many questions regarding things that are standard PF and PH protocol and haven't been done. I would strongly encourage you, since you're in Colorado, to make a trip to National Jewish and get another opinion and more thorough evaluation and education. As to humidity, some of us love it and some of us hate it. I guess its a matter of what comes with it too. One other comment. If you don't have one, order an oximeter tomorrow. You can get them for as little as $65 and its the only way to know what is happening under various conditions. Many members have gotten this one which is FDA approved. http://portablenebs.com/choiceoximeter.htm > > > > In March of this year I was diagnosed with pulmonary hypertension > based on an echocardiogram. I was referred to a local pulmonologist for > follow-up.. This physician felt that the cause of the PH was sleep > apnea and so scheduled a sleep study. When the results came back > negative he rescheduled the echocardiogram and a repeat CT of the lung, > the initial done during a hospitalization in March with dx of pneumonia > and influenza. > > Based on the CT scan being almost identical to the one performed 2 > months earlier this physician then scheduled me for a bronchoscopy. > This was done just a week ago. In reviewing the results he noted an > elevation of leukocytes and neutrophils in the bronchial wash, and the > cytology report and the pathology report both indicated chronic > inflammation. He feels that this indicates pulmonary fibrosis. He has > started me on Prednisone with scheduled repeat CT and pulmonary function > test the end of the month. If no change he plans on doing an open > biopsy. Does is conclusions sound valid? Is he taking the right > approach? From my reading I know that PF can lead to PH, so I know > that I still need to have a right heart cath to confirm PH. After one > week on prednisone I am not noticing any changes, am I being to > impatient? > > > > > > Craig > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2009 Report Share Posted June 4, 2009 I know I am not the first to say this, but I am still hoping and praying that all of this just turns out to be some big mistake, and that I will wake up and this will all be but a bad dream. My wife has been dealing with emphysema and asthma for the last year and a half so we don't need to deal with any more of this. Two oxygen concentrators in the house seems a bit much. Now that I have had my pity party, I took my wife's pulse oximeter with me on my walk this morning and noted that my O2 sats remained fairly normal during the walk with an increased heart rate, from low 70's to high 90's, but at the end of the walk my O2 sats dropped into the low 90's. This is an improvement over the last month. The weather has improved and my breathing is better this morning. Could it be something else? I am not luooking forward to a biopsy of my lung and so I am grasping for any thread of hope I can find. Thanks again for listening to me whine. Craig From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Advice neededTo: Breathe-Support@ yahoogroups. comDate: Wednesday, June 3, 2009, 2:06 PM CraigSome does and some doesn't. Ok, my first piece of advice which I wouldgive to everyone. I don't know if your pulmonologist is connected to oneof the teaching hospitals with an Interstitial Lung Disease specialty ornot. But, if not, I'd absolutely recommend a second opinion from such afacility as one of the IPF Centers of Excellence. Here is a listing:www.ipfnet.orgNow, I'm a bit disturbed by the fact you haven't yet had a right heartcatheter. That is the ONLY way to get a true accurate diagnosis ofPulmonary Hypertension. If that does indicate pulmonary hypertension,then I'd try to find a cardiologist specializing in that as well andthere aren't that many. But, here is a site to find such a specialist.http://www.phassoci ation.org/ Find_A_Doctor/You're dealing with two diseases that the average pulmonologist and theaverage cardiologist are not the experts in. Now, you may be lucky andhave hit upon one with lots of PF experience, although the lack of aheart catheter after an echocardiogram which indicated high pulmonaryartery pressure disturbs me. All the CT's and sleep study and everythingelse and I don't understand why that wasn't done.There are mixed feelings on the bronchoscopy, but you've already had itso those are not now relevant. A biopsy, generall VATS as opposed totraditional open lung biopsy, is the best way to determine the specificinterstitial lung disease you have. But it is also a very invasiveprocedure. Before doing one you need to have all the information andknow what is being looked for and how that information would be used.Expecting changes after one week of prednisone is a bit impatient. Now,with all the inflammation and other abnormal readings, I also wonder ifyou've been given a complete battery of tests for connective tissue orautoimmune diseases. If not, that is essential. That could uncover anunderlying cause or eliminate one.You're saying pulmonary fibrosis, but has the doctor indicated whichtype of the disease he believes from the CT's? Or did they not give thatmuch information. We tend to lump PF and it consists of over 200diseases, some very different from others.You're doing the right thing by trying to educate yourself. You're goingto face decisions and choices and you must take control of your medicalcare. You mentioned prednisone. What dosage? What is the plan ofPrednisone? Were you put on Imuran as well? Were you told about the sideeffects and given meds to help offset some of them and told otherpreventative measures?How is your oxygen saturation during a six minute walk? I'm assuming itstays over 90% as you don't mention being on oxygen. How were youroxygen levels during your sleep study?>> In March of this year I was diagnosed with pulmonary hypertensionbased on an echocardiogram. I was referred to a local pulmonologist forfollow-up.. This physician felt that the cause of the PH was sleepapnea and so scheduled a sleep study. When the results came backnegative he rescheduled the echocardiogram and a repeat CT of the lung,the initial done during a hospitalization in March with dx of pneumoniaand influenza.> Based on the CT scan being almost identical to the one performed 2months earlier this physician then scheduled me for a bronchoscopy. This was done just a week ago. In reviewing the results he noted anelevation of leukocytes and neutrophils in the bronchial wash, and thecytology report and the pathology report both indicated chronicinflammation. He feels that this indicates pulmonary fibrosis. He hasstarted me on Prednisone with scheduled repeat CT and pulmonary functiontest the end of the month. If no change he plans on doing an openbiopsy. Does is conclusions sound valid? Is he taking the rightapproach? From my reading I know that PF can lead to PH, so I knowthat I still need to have a right heart cath to confirm PH. After oneweek on prednisone I am not noticing any changes, am I being toimpatient?>>> Craig> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2009 Report Share Posted June 4, 2009 I know I am not the first to say this, but I am still hoping and praying that all of this just turns out to be some big mistake, and that I will wake up and this will all be but a bad dream. My wife has been dealing with emphysema and asthma for the last year and a half so we don't need to deal with any more of this. Two oxygen concentrators in the house seems a bit much. Now that I have had my pity party, I took my wife's pulse oximeter with me on my walk this morning and noted that my O2 sats remained fairly normal during the walk with an increased heart rate, from low 70's to high 90's, but at the end of the walk my O2 sats dropped into the low 90's. This is an improvement over the last month. The weather has improved and my breathing is better this morning. Could it be something else? I am not luooking forward to a biopsy of my lung and so I am grasping for any thread of hope I can find. Thanks again for listening to me whine. Craig From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Advice neededTo: Breathe-Support@ yahoogroups. comDate: Wednesday, June 3, 2009, 2:06 PM CraigSome does and some doesn't. Ok, my first piece of advice which I wouldgive to everyone. I don't know if your pulmonologist is connected to oneof the teaching hospitals with an Interstitial Lung Disease specialty ornot. But, if not, I'd absolutely recommend a second opinion from such afacility as one of the IPF Centers of Excellence. Here is a listing:www.ipfnet.orgNow, I'm a bit disturbed by the fact you haven't yet had a right heartcatheter. That is the ONLY way to get a true accurate diagnosis ofPulmonary Hypertension. If that does indicate pulmonary hypertension,then I'd try to find a cardiologist specializing in that as well andthere aren't that many. But, here is a site to find such a specialist.http://www.phassoci ation.org/ Find_A_Doctor/You're dealing with two diseases that the average pulmonologist and theaverage cardiologist are not the experts in. Now, you may be lucky andhave hit upon one with lots of PF experience, although the lack of aheart catheter after an echocardiogram which indicated high pulmonaryartery pressure disturbs me. All the CT's and sleep study and everythingelse and I don't understand why that wasn't done.There are mixed feelings on the bronchoscopy, but you've already had itso those are not now relevant. A biopsy, generall VATS as opposed totraditional open lung biopsy, is the best way to determine the specificinterstitial lung disease you have. But it is also a very invasiveprocedure. Before doing one you need to have all the information andknow what is being looked for and how that information would be used.Expecting changes after one week of prednisone is a bit impatient. Now,with all the inflammation and other abnormal readings, I also wonder ifyou've been given a complete battery of tests for connective tissue orautoimmune diseases. If not, that is essential. That could uncover anunderlying cause or eliminate one.You're saying pulmonary fibrosis, but has the doctor indicated whichtype of the disease he believes from the CT's? Or did they not give thatmuch information. We tend to lump PF and it consists of over 200diseases, some very different from others.You're doing the right thing by trying to educate yourself. You're goingto face decisions and choices and you must take control of your medicalcare. You mentioned prednisone. What dosage? What is the plan ofPrednisone? Were you put on Imuran as well? Were you told about the sideeffects and given meds to help offset some of them and told otherpreventative measures?How is your oxygen saturation during a six minute walk? I'm assuming itstays over 90% as you don't mention being on oxygen. How were youroxygen levels during your sleep study?>> In March of this year I was diagnosed with pulmonary hypertensionbased on an echocardiogram. I was referred to a local pulmonologist forfollow-up.. This physician felt that the cause of the PH was sleepapnea and so scheduled a sleep study. When the results came backnegative he rescheduled the echocardiogram and a repeat CT of the lung,the initial done during a hospitalization in March with dx of pneumoniaand influenza.> Based on the CT scan being almost identical to the one performed 2months earlier this physician then scheduled me for a bronchoscopy. This was done just a week ago. In reviewing the results he noted anelevation of leukocytes and neutrophils in the bronchial wash, and thecytology report and the pathology report both indicated chronicinflammation. He feels that this indicates pulmonary fibrosis. He hasstarted me on Prednisone with scheduled repeat CT and pulmonary functiontest the end of the month. If no change he plans on doing an openbiopsy. Does is conclusions sound valid? Is he taking the rightapproach? From my reading I know that PF can lead to PH, so I knowthat I still need to have a right heart cath to confirm PH. After oneweek on prednisone I am not noticing any changes, am I being toimpatient?>>> Craig> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2009 Report Share Posted June 4, 2009 Craig, Have you been diagnosed with ILD ?? Cause your numbers look good to me. When saturation drops into the 80'sthat is a problem. bur walking and staying in the 90's seems like a good thing to me. Has your Dr wanted to do a biopsy? Love and Prayers, Peggy   IPF  2004,  FloridaWorry looks around, Sorry looks back,  Faith looks up. I know I am not the first to say this, but I am still hoping and praying that all of this just turns out to be some big mistake, and that I will wake up and this will all be but a bad dream. My wife has been dealing with emphysema and asthma for the last year and a half so we don't need to deal with any more of this. Two oxygen concentrators in the house seems a bit much. Now that I have had my pity party, I took my wife's pulse oximeter with me on my walk this morning and noted that my O2 sats remained fairly normal during the walk with an increased heart rate, from low 70's to high 90's, but at the end of the walk my O2 sats dropped into the low 90's. This is an improvement over the last month. The weather has improved and my breathing is better this morning. Could it be something else? I am not luooking forward to a biopsy of my lung and so I am grasping for any thread of hope I can find. Thanks again for listening to me whine. Craig--- On Wed, 6/3/09, Beth <mbmurtha (AT) yahoo (DOT) com>wrote:From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: Advice neededTo: Breathe-Support Date: Wednesday, June 3, 2009, 5:48 PMCraig,Good evening and welcome! I'm so sorry that you had reason to look for a group like this but since you did I'm glad that you found us. There is nothing like an uncommon disease to make you feel isolated and bewildered.Bruce gave you some really good information and made excellent suggestions. Based on this last post of yours something that I would be most concerned about is what your O2 saturations are doing when you are doing your normal activities of daily living. You mentioned becoming quite short of breath when you walk a short distance. That is worrying. My suggestion would be to ask your doctor for at the very least a 6 minute walk to get an idea of what your oxygen levels do when you move around. Though you may not be anxious to use oxygen throughout your day, if you need it you will be amazed at how much better you feel when you use it. One thing you mentioned really resonated with me. The weather. I think most people with lung disease are very sensitive to changes in the weather.. For me, I feel lousy (tired, short of breath, coughing more) on the day when a front is passing through and the barometric pressure is changing.. I discovered that many of us have this when I was in pulmonary rehab and I mentioned it to someone. Steve (who had been battling lung disease for years at that point) just shook his head and said, yes I always feel the worst on the day the weather changes. It was nice to have that validation and know that it wasn't all in my head. Stick around and ask whatever questions come to mind. We're all in the same boat and try to help each other as best we can. BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: Marilynn <candmjackson@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, June 3, 2009 8:24:38 PMSubject: Re: Re: Advice neededBruce:I want to thank you for responding. My pulmonologist referred to idiopathic pulmonary fibrosis. I am on oxygen at night only. The sleep study revealed a drop into the low 80's, but did not indicate sleep apnea. I have not yet had a walk test, so I don't know how low I would drop, but on days like today I get very short of breath in a short distance. The prednisone dose is 60mg qd with the repeat PFT and CT scheduled for the 26th of this month. We were talking of the RHC prior to the second CT at which time the doctor stopped talking about the PH and seemed more intent on dealing with the PF. So at this time I still don't have a definite diagnosis of either, just more testing. I seem to have more trouble on days that we have storm systems move through and the atmospheric pressure is low and the humidity high. Is this normaly associated with PF? FYI I live in Colorado, but not in the mountains. Thank you again for responding, it really helps to have someone who has gone through this to help me to understand. Craig--- On Wed, 6/3/09, Bruce Moreland<brucemoreland@ gmail.com> wrote:From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Advice neededTo: Breathe-Support@ yahoogroups. comDate: Wednesday, June 3, 2009, 2:06 PMCraigSome does and some doesn't. Ok, my first piece of advice which I wouldgive to everyone. I don't know if your pulmonologist is connected to oneof the teaching hospitals with an Interstitial Lung Disease specialty ornot. But, if not, I'd absolutely recommend a second opinion from such afacility as one of the IPF Centers of Excellence. Here is a listing:www.ipfnet.orgNow, I'm a bit disturbed by the fact you haven't yet had a right heartcatheter. That is the ONLY way to get a true accurate diagnosis ofPulmonary Hypertension. If that does indicate pulmonary hypertension,then I'd try to find a cardiologist specializing in that as well andthere aren't that many. But, here is a site to find such a specialist.http://www.phassoci ation.org/ Find_A_Doctor/You're dealing with two diseases that the average pulmonologist and theaverage cardiologist are not the experts in. Now, you may be lucky andhave hit upon one with lots of PF experience, although the lack of aheart catheter after an echocardiogram which indicated high pulmonaryartery pressure disturbs me. All the CT's and sleep study and everythingelse and I don't understand why that wasn't done.There are mixed feelings on the bronchoscopy, but you've already had itso those are not now relevant. A biopsy, generall VATS as opposed totraditional open lung biopsy, is the best way to determine the specificinterstitial lung disease you have. But it is also a very invasiveprocedure. Before doing one you need to have all the information andknow what is being looked for and how that information would be used.Expecting changes after one week of prednisone is a bit impatient. Now,with all the inflammation and other abnormal readings, I also wonder ifyou've been given a complete battery of tests for connective tissue orautoimmune diseases. If not, that is essential. That could uncover anunderlying cause or eliminate one.You're saying pulmonary fibrosis, but has the doctor indicated whichtype of the disease he believes from the CT's? Or did they not give thatmuch information. We tend to lump PF and it consists of over 200diseases, some very different from others.You're doing the right thing by trying to educate yourself. You're goingto face decisions and choices and you must take control of your medicalcare. You mentioned prednisone. What dosage? What is the plan ofPrednisone? Were you put on Imuran as well? Were you told about the sideeffects and given meds to help offset some of them and told otherpreventative measures?How is your oxygen saturation during a six minute walk? I'm assuming itstays over 90% as you don't mention being on oxygen. How were youroxygen levels during your sleep study?>> In March of this year I was diagnosed with pulmonary hypertensionbased on an echocardiogram. I was referred to a local pulmonologist forfollow-up.. This physician felt that the cause of the PH was sleepapnea and so scheduled a sleep study. When the results came backnegative he rescheduled the echocardiogram and a repeat CT of the lung,the initial done during a hospitalization in March with dx of pneumoniaand influenza.> Based on the CT scan being almost identical to the one performed 2months earlier this physician then scheduled me for a bronchoscopy. This was done just a week ago. In reviewing the results he noted anelevation of leukocytes and neutrophils in the bronchial wash, and thecytology report and the pathology report both indicated chronicinflammation. He feels that this indicates pulmonary fibrosis. He hasstarted me on Prednisone with scheduled repeat CT and pulmonary functiontest the end of the month. If no change he plans on doing an openbiopsy. Does is conclusions sound valid? Is he taking the rightapproach? From my reading I know that PF can lead to PH, so I knowthat I still need to have a right heart cath to confirm PH. After oneweek on prednisone I am not noticing any changes, am I being toimpatient?>>> Craig> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2009 Report Share Posted June 4, 2009 Craig, Have you been diagnosed with ILD ?? Cause your numbers look good to me. When saturation drops into the 80'sthat is a problem. bur walking and staying in the 90's seems like a good thing to me. Has your Dr wanted to do a biopsy? Love and Prayers, Peggy   IPF  2004,  FloridaWorry looks around, Sorry looks back,  Faith looks up. I know I am not the first to say this, but I am still hoping and praying that all of this just turns out to be some big mistake, and that I will wake up and this will all be but a bad dream. My wife has been dealing with emphysema and asthma for the last year and a half so we don't need to deal with any more of this. Two oxygen concentrators in the house seems a bit much. Now that I have had my pity party, I took my wife's pulse oximeter with me on my walk this morning and noted that my O2 sats remained fairly normal during the walk with an increased heart rate, from low 70's to high 90's, but at the end of the walk my O2 sats dropped into the low 90's. This is an improvement over the last month. The weather has improved and my breathing is better this morning. Could it be something else? I am not luooking forward to a biopsy of my lung and so I am grasping for any thread of hope I can find. Thanks again for listening to me whine. Craig--- On Wed, 6/3/09, Beth <mbmurtha (AT) yahoo (DOT) com>wrote:From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: Advice neededTo: Breathe-Support Date: Wednesday, June 3, 2009, 5:48 PMCraig,Good evening and welcome! I'm so sorry that you had reason to look for a group like this but since you did I'm glad that you found us. There is nothing like an uncommon disease to make you feel isolated and bewildered.Bruce gave you some really good information and made excellent suggestions. Based on this last post of yours something that I would be most concerned about is what your O2 saturations are doing when you are doing your normal activities of daily living. You mentioned becoming quite short of breath when you walk a short distance. That is worrying. My suggestion would be to ask your doctor for at the very least a 6 minute walk to get an idea of what your oxygen levels do when you move around. Though you may not be anxious to use oxygen throughout your day, if you need it you will be amazed at how much better you feel when you use it. One thing you mentioned really resonated with me. The weather. I think most people with lung disease are very sensitive to changes in the weather.. For me, I feel lousy (tired, short of breath, coughing more) on the day when a front is passing through and the barometric pressure is changing.. I discovered that many of us have this when I was in pulmonary rehab and I mentioned it to someone. Steve (who had been battling lung disease for years at that point) just shook his head and said, yes I always feel the worst on the day the weather changes. It was nice to have that validation and know that it wasn't all in my head. Stick around and ask whatever questions come to mind. We're all in the same boat and try to help each other as best we can. BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: Marilynn <candmjackson@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, June 3, 2009 8:24:38 PMSubject: Re: Re: Advice neededBruce:I want to thank you for responding. My pulmonologist referred to idiopathic pulmonary fibrosis. I am on oxygen at night only. The sleep study revealed a drop into the low 80's, but did not indicate sleep apnea. I have not yet had a walk test, so I don't know how low I would drop, but on days like today I get very short of breath in a short distance. The prednisone dose is 60mg qd with the repeat PFT and CT scheduled for the 26th of this month. We were talking of the RHC prior to the second CT at which time the doctor stopped talking about the PH and seemed more intent on dealing with the PF. So at this time I still don't have a definite diagnosis of either, just more testing. I seem to have more trouble on days that we have storm systems move through and the atmospheric pressure is low and the humidity high. Is this normaly associated with PF? FYI I live in Colorado, but not in the mountains. Thank you again for responding, it really helps to have someone who has gone through this to help me to understand. Craig--- On Wed, 6/3/09, Bruce Moreland<brucemoreland@ gmail.com> wrote:From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Advice neededTo: Breathe-Support@ yahoogroups. comDate: Wednesday, June 3, 2009, 2:06 PMCraigSome does and some doesn't. Ok, my first piece of advice which I wouldgive to everyone. I don't know if your pulmonologist is connected to oneof the teaching hospitals with an Interstitial Lung Disease specialty ornot. But, if not, I'd absolutely recommend a second opinion from such afacility as one of the IPF Centers of Excellence. Here is a listing:www.ipfnet.orgNow, I'm a bit disturbed by the fact you haven't yet had a right heartcatheter. That is the ONLY way to get a true accurate diagnosis ofPulmonary Hypertension. If that does indicate pulmonary hypertension,then I'd try to find a cardiologist specializing in that as well andthere aren't that many. But, here is a site to find such a specialist.http://www.phassoci ation.org/ Find_A_Doctor/You're dealing with two diseases that the average pulmonologist and theaverage cardiologist are not the experts in. Now, you may be lucky andhave hit upon one with lots of PF experience, although the lack of aheart catheter after an echocardiogram which indicated high pulmonaryartery pressure disturbs me. All the CT's and sleep study and everythingelse and I don't understand why that wasn't done.There are mixed feelings on the bronchoscopy, but you've already had itso those are not now relevant. A biopsy, generall VATS as opposed totraditional open lung biopsy, is the best way to determine the specificinterstitial lung disease you have. But it is also a very invasiveprocedure. Before doing one you need to have all the information andknow what is being looked for and how that information would be used.Expecting changes after one week of prednisone is a bit impatient. Now,with all the inflammation and other abnormal readings, I also wonder ifyou've been given a complete battery of tests for connective tissue orautoimmune diseases. If not, that is essential. That could uncover anunderlying cause or eliminate one.You're saying pulmonary fibrosis, but has the doctor indicated whichtype of the disease he believes from the CT's? Or did they not give thatmuch information. We tend to lump PF and it consists of over 200diseases, some very different from others.You're doing the right thing by trying to educate yourself. You're goingto face decisions and choices and you must take control of your medicalcare. You mentioned prednisone. What dosage? What is the plan ofPrednisone? Were you put on Imuran as well? Were you told about the sideeffects and given meds to help offset some of them and told otherpreventative measures?How is your oxygen saturation during a six minute walk? I'm assuming itstays over 90% as you don't mention being on oxygen. How were youroxygen levels during your sleep study?>> In March of this year I was diagnosed with pulmonary hypertensionbased on an echocardiogram. I was referred to a local pulmonologist forfollow-up.. This physician felt that the cause of the PH was sleepapnea and so scheduled a sleep study. When the results came backnegative he rescheduled the echocardiogram and a repeat CT of the lung,the initial done during a hospitalization in March with dx of pneumoniaand influenza.> Based on the CT scan being almost identical to the one performed 2months earlier this physician then scheduled me for a bronchoscopy. This was done just a week ago. In reviewing the results he noted anelevation of leukocytes and neutrophils in the bronchial wash, and thecytology report and the pathology report both indicated chronicinflammation. He feels that this indicates pulmonary fibrosis. He hasstarted me on Prednisone with scheduled repeat CT and pulmonary functiontest the end of the month. If no change he plans on doing an openbiopsy. Does is conclusions sound valid? Is he taking the rightapproach? From my reading I know that PF can lead to PH, so I knowthat I still need to have a right heart cath to confirm PH. After oneweek on prednisone I am not noticing any changes, am I being toimpatient?>>> Craig> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2009 Report Share Posted June 4, 2009 Craig Could be....let's see...could be.....a lot of things. I would have uncertainty based on your diagnosis to this point and the lack of information as to exactly what you have and as to the relationship of the various diseases you may have to each other. Thats why I suggest a thorough diagnosis and evaluation at a major teaching hospital such as National Jewish. Prior to that I would not have a biopsy. After that and learning more then you can decide. I did have one, did get the information I wanted, did have pain, am glad I did. However, biopsy is not the right answer for everyone. You don't know enough yet to know if its right for you. > > > > In March of this year I was diagnosed with pulmonary hypertension > based on an echocardiogram. I was referred to a local pulmonologist for > follow-up.. This physician felt that the cause of the PH was sleep > apnea and so scheduled a sleep study. When the results came back > negative he rescheduled the echocardiogram and a repeat CT of the lung, > the initial done during a hospitalization in March with dx of pneumonia > and influenza. > > Based on the CT scan being almost identical to the one performed 2 > months earlier this physician then scheduled me for a bronchoscopy. > This was done just a week ago. In reviewing the results he noted an > elevation of leukocytes and neutrophils in the bronchial wash, and the > cytology report and the pathology report both indicated chronic > inflammation. He feels that this indicates pulmonary fibrosis. He has > started me on Prednisone with scheduled repeat CT and pulmonary function > test the end of the month. If no change he plans on doing an open > biopsy. Does is conclusions sound valid? Is he taking the right > approach? From my reading I know that PF can lead to PH, so I know > that I still need to have a right heart cath to confirm PH. After one > week on prednisone I am not noticing any changes, am I being to > impatient? > > > > > > Craig > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 Hi Peggy this is my second day reading posts since last week -- my kids were in from Florida, no time for computers Hi Craig what is 60 mgs qd? does that mean 4 times a day? What is RHC? i do know that PH is pulmonary hypertension the weather affects many of us in different ways -- storm systems, hot and humid are the worst for me in Pennsylvania i don't remember if you said where your doc is i do hope you see someone at a teaching hospital Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Advice neededTo: Breathe-Support Date: Wednesday, June 3, 2009, 8:24 PM Bruce: I want to thank you for responding. My pulmonologist referred to idiopathic pulmonary fibrosis. I am on oxygen at night only. The sleep study revealed a drop into the low 80's, but did not indicate sleep apnea. I have not yet had a walk test, so I don't know how low I would drop, but on days like today I get very short of breath in a short distance. The prednisone dose is 60mg qd with the repeat PFT and CT scheduled for the 26th of this month. We were talking of the RHC prior to the second CT at which time the doctor stopped talking about the PH and seemed more intent on dealing with the PF. So at this time I still don't have a definite diagnosis of either, just more testing. I seem to have more trouble on days that we have storm systems move through and the atmospheric pressure is low and the humidity high. Is this normaly associated with PF? FYI I live in Colorado, but not in the mountains. Thank you again for responding, it really helps to have someone who has gone through this to help me to understand. Craig From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Advice neededTo: Breathe-Support@ yahoogroups. comDate: Wednesday, June 3, 2009, 2:06 PM CraigSome does and some doesn't. Ok, my first piece of advice which I wouldgive to everyone. I don't know if your pulmonologist is connected to oneof the teaching hospitals with an Interstitial Lung Disease specialty ornot. But, if not, I'd absolutely recommend a second opinion from such afacility as one of the IPF Centers of Excellence. Here is a listing:www.ipfnet.orgNow, I'm a bit disturbed by the fact you haven't yet had a right heartcatheter. That is the ONLY way to get a true accurate diagnosis ofPulmonary Hypertension. If that does indicate pulmonary hypertension,then I'd try to find a cardiologist specializing in that as well andthere aren't that many. But, here is a site to find such a specialist.http://www.phassoci ation.org/ Find_A_Doctor/You're dealing with two diseases that the average pulmonologist and theaverage cardiologist are not the experts in. Now, you may be lucky andhave hit upon one with lots of PF experience, although the lack of aheart catheter after an echocardiogram which indicated high pulmonaryartery pressure disturbs me. All the CT's and sleep study and everythingelse and I don't understand why that wasn't done.There are mixed feelings on the bronchoscopy, but you've already had itso those are not now relevant. A biopsy, generall VATS as opposed totraditional open lung biopsy, is the best way to determine the specificinterstitial lung disease you have. But it is also a very invasiveprocedure. Before doing one you need to have all the information andknow what is being looked for and how that information would be used.Expecting changes after one week of prednisone is a bit impatient. Now,with all the inflammation and other abnormal readings, I also wonder ifyou've been given a complete battery of tests for connective tissue orautoimmune diseases. If not, that is essential. That could uncover anunderlying cause or eliminate one.You're saying pulmonary fibrosis, but has the doctor indicated whichtype of the disease he believes from the CT's? Or did they not give thatmuch information. We tend to lump PF and it consists of over 200diseases, some very different from others.You're doing the right thing by trying to educate yourself. You're goingto face decisions and choices and you must take control of your medicalcare. You mentioned prednisone. What dosage? What is the plan ofPrednisone? Were you put on Imuran as well? Were you told about the sideeffects and given meds to help offset some of them and told otherpreventative measures?How is your oxygen saturation during a six minute walk? I'm assuming itstays over 90% as you don't mention being on oxygen. How were youroxygen levels during your sleep study?>> In March of this year I was diagnosed with pulmonary hypertensionbased on an echocardiogram. I was referred to a local pulmonologist forfollow-up.. This physician felt that the cause of the PH was sleepapnea and so scheduled a sleep study. When the results came backnegative he rescheduled the echocardiogram and a repeat CT of the lung,the initial done during a hospitalization in March with dx of pneumoniaand influenza.> Based on the CT scan being almost identical to the one performed 2months earlier this physician then scheduled me for a bronchoscopy. This was done just a week ago. In reviewing the results he noted anelevation of leukocytes and neutrophils in the bronchial wash, and thecytology report and the pathology report both indicated chronicinflammation. He feels that this indicates pulmonary fibrosis. He hasstarted me on Prednisone with scheduled repeat CT and pulmonary functiontest the end of the month. If no change he plans on doing an openbiopsy. Does is conclusions sound valid? Is he taking the rightapproach? From my reading I know that PF can lead to PH, so I knowthat I still need to have a right heart cath to confirm PH. After oneweek on prednisone I am not noticing any changes, am I being toimpatient?>>> Craig> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 Hi Peggy this is my second day reading posts since last week -- my kids were in from Florida, no time for computers Hi Craig what is 60 mgs qd? does that mean 4 times a day? What is RHC? i do know that PH is pulmonary hypertension the weather affects many of us in different ways -- storm systems, hot and humid are the worst for me in Pennsylvania i don't remember if you said where your doc is i do hope you see someone at a teaching hospital Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Advice neededTo: Breathe-Support Date: Wednesday, June 3, 2009, 8:24 PM Bruce: I want to thank you for responding. My pulmonologist referred to idiopathic pulmonary fibrosis. I am on oxygen at night only. The sleep study revealed a drop into the low 80's, but did not indicate sleep apnea. I have not yet had a walk test, so I don't know how low I would drop, but on days like today I get very short of breath in a short distance. The prednisone dose is 60mg qd with the repeat PFT and CT scheduled for the 26th of this month. We were talking of the RHC prior to the second CT at which time the doctor stopped talking about the PH and seemed more intent on dealing with the PF. So at this time I still don't have a definite diagnosis of either, just more testing. I seem to have more trouble on days that we have storm systems move through and the atmospheric pressure is low and the humidity high. Is this normaly associated with PF? FYI I live in Colorado, but not in the mountains. Thank you again for responding, it really helps to have someone who has gone through this to help me to understand. Craig From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Advice neededTo: Breathe-Support@ yahoogroups. comDate: Wednesday, June 3, 2009, 2:06 PM CraigSome does and some doesn't. Ok, my first piece of advice which I wouldgive to everyone. I don't know if your pulmonologist is connected to oneof the teaching hospitals with an Interstitial Lung Disease specialty ornot. But, if not, I'd absolutely recommend a second opinion from such afacility as one of the IPF Centers of Excellence. Here is a listing:www.ipfnet.orgNow, I'm a bit disturbed by the fact you haven't yet had a right heartcatheter. That is the ONLY way to get a true accurate diagnosis ofPulmonary Hypertension. If that does indicate pulmonary hypertension,then I'd try to find a cardiologist specializing in that as well andthere aren't that many. But, here is a site to find such a specialist.http://www.phassoci ation.org/ Find_A_Doctor/You're dealing with two diseases that the average pulmonologist and theaverage cardiologist are not the experts in. Now, you may be lucky andhave hit upon one with lots of PF experience, although the lack of aheart catheter after an echocardiogram which indicated high pulmonaryartery pressure disturbs me. All the CT's and sleep study and everythingelse and I don't understand why that wasn't done.There are mixed feelings on the bronchoscopy, but you've already had itso those are not now relevant. A biopsy, generall VATS as opposed totraditional open lung biopsy, is the best way to determine the specificinterstitial lung disease you have. But it is also a very invasiveprocedure. Before doing one you need to have all the information andknow what is being looked for and how that information would be used.Expecting changes after one week of prednisone is a bit impatient. Now,with all the inflammation and other abnormal readings, I also wonder ifyou've been given a complete battery of tests for connective tissue orautoimmune diseases. If not, that is essential. That could uncover anunderlying cause or eliminate one.You're saying pulmonary fibrosis, but has the doctor indicated whichtype of the disease he believes from the CT's? Or did they not give thatmuch information. We tend to lump PF and it consists of over 200diseases, some very different from others.You're doing the right thing by trying to educate yourself. You're goingto face decisions and choices and you must take control of your medicalcare. You mentioned prednisone. What dosage? What is the plan ofPrednisone? Were you put on Imuran as well? Were you told about the sideeffects and given meds to help offset some of them and told otherpreventative measures?How is your oxygen saturation during a six minute walk? I'm assuming itstays over 90% as you don't mention being on oxygen. How were youroxygen levels during your sleep study?>> In March of this year I was diagnosed with pulmonary hypertensionbased on an echocardiogram. I was referred to a local pulmonologist forfollow-up.. This physician felt that the cause of the PH was sleepapnea and so scheduled a sleep study. When the results came backnegative he rescheduled the echocardiogram and a repeat CT of the lung,the initial done during a hospitalization in March with dx of pneumoniaand influenza.> Based on the CT scan being almost identical to the one performed 2months earlier this physician then scheduled me for a bronchoscopy. This was done just a week ago. In reviewing the results he noted anelevation of leukocytes and neutrophils in the bronchial wash, and thecytology report and the pathology report both indicated chronicinflammation. He feels that this indicates pulmonary fibrosis. He hasstarted me on Prednisone with scheduled repeat CT and pulmonary functiontest the end of the month. If no change he plans on doing an openbiopsy. Does is conclusions sound valid? Is he taking the rightapproach? From my reading I know that PF can lead to PH, so I knowthat I still need to have a right heart cath to confirm PH. After oneweek on prednisone I am not noticing any changes, am I being toimpatient?>>> Craig> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 Hi Peggy this is my second day reading posts since last week -- my kids were in from Florida, no time for computers Hi Craig what is 60 mgs qd? does that mean 4 times a day? What is RHC? i do know that PH is pulmonary hypertension the weather affects many of us in different ways -- storm systems, hot and humid are the worst for me in Pennsylvania i don't remember if you said where your doc is i do hope you see someone at a teaching hospital Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Advice neededTo: Breathe-Support Date: Wednesday, June 3, 2009, 8:24 PM Bruce: I want to thank you for responding. My pulmonologist referred to idiopathic pulmonary fibrosis. I am on oxygen at night only. The sleep study revealed a drop into the low 80's, but did not indicate sleep apnea. I have not yet had a walk test, so I don't know how low I would drop, but on days like today I get very short of breath in a short distance. The prednisone dose is 60mg qd with the repeat PFT and CT scheduled for the 26th of this month. We were talking of the RHC prior to the second CT at which time the doctor stopped talking about the PH and seemed more intent on dealing with the PF. So at this time I still don't have a definite diagnosis of either, just more testing. I seem to have more trouble on days that we have storm systems move through and the atmospheric pressure is low and the humidity high. Is this normaly associated with PF? FYI I live in Colorado, but not in the mountains. Thank you again for responding, it really helps to have someone who has gone through this to help me to understand. Craig From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Advice neededTo: Breathe-Support@ yahoogroups. comDate: Wednesday, June 3, 2009, 2:06 PM CraigSome does and some doesn't. Ok, my first piece of advice which I wouldgive to everyone. I don't know if your pulmonologist is connected to oneof the teaching hospitals with an Interstitial Lung Disease specialty ornot. But, if not, I'd absolutely recommend a second opinion from such afacility as one of the IPF Centers of Excellence. Here is a listing:www.ipfnet.orgNow, I'm a bit disturbed by the fact you haven't yet had a right heartcatheter. That is the ONLY way to get a true accurate diagnosis ofPulmonary Hypertension. If that does indicate pulmonary hypertension,then I'd try to find a cardiologist specializing in that as well andthere aren't that many. But, here is a site to find such a specialist.http://www.phassoci ation.org/ Find_A_Doctor/You're dealing with two diseases that the average pulmonologist and theaverage cardiologist are not the experts in. Now, you may be lucky andhave hit upon one with lots of PF experience, although the lack of aheart catheter after an echocardiogram which indicated high pulmonaryartery pressure disturbs me. All the CT's and sleep study and everythingelse and I don't understand why that wasn't done.There are mixed feelings on the bronchoscopy, but you've already had itso those are not now relevant. A biopsy, generall VATS as opposed totraditional open lung biopsy, is the best way to determine the specificinterstitial lung disease you have. But it is also a very invasiveprocedure. Before doing one you need to have all the information andknow what is being looked for and how that information would be used.Expecting changes after one week of prednisone is a bit impatient. Now,with all the inflammation and other abnormal readings, I also wonder ifyou've been given a complete battery of tests for connective tissue orautoimmune diseases. If not, that is essential. That could uncover anunderlying cause or eliminate one.You're saying pulmonary fibrosis, but has the doctor indicated whichtype of the disease he believes from the CT's? Or did they not give thatmuch information. We tend to lump PF and it consists of over 200diseases, some very different from others.You're doing the right thing by trying to educate yourself. You're goingto face decisions and choices and you must take control of your medicalcare. You mentioned prednisone. What dosage? What is the plan ofPrednisone? Were you put on Imuran as well? Were you told about the sideeffects and given meds to help offset some of them and told otherpreventative measures?How is your oxygen saturation during a six minute walk? I'm assuming itstays over 90% as you don't mention being on oxygen. How were youroxygen levels during your sleep study?>> In March of this year I was diagnosed with pulmonary hypertensionbased on an echocardiogram. I was referred to a local pulmonologist forfollow-up.. This physician felt that the cause of the PH was sleepapnea and so scheduled a sleep study. When the results came backnegative he rescheduled the echocardiogram and a repeat CT of the lung,the initial done during a hospitalization in March with dx of pneumoniaand influenza.> Based on the CT scan being almost identical to the one performed 2months earlier this physician then scheduled me for a bronchoscopy. This was done just a week ago. In reviewing the results he noted anelevation of leukocytes and neutrophils in the bronchial wash, and thecytology report and the pathology report both indicated chronicinflammation. He feels that this indicates pulmonary fibrosis. He hasstarted me on Prednisone with scheduled repeat CT and pulmonary functiontest the end of the month. If no change he plans on doing an openbiopsy. Does is conclusions sound valid? Is he taking the rightapproach? From my reading I know that PF can lead to PH, so I knowthat I still need to have a right heart cath to confirm PH. After oneweek on prednisone I am not noticing any changes, am I being toimpatient?>>> Craig> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 Beth now that you mention it, when i was still working, sometimes the kids in the classroom would change their behaviors with changes in the weather, maybe it affects everyone Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Advice neededTo: Breathe-Support Date: Wednesday, June 3, 2009, 8:48 PM Craig, Good evening and welcome! I'm so sorry that you had reason to look for a group like this but since you did I'm glad that you found us. There is nothing like an uncommon disease to make you feel isolated and bewildered. Bruce gave you some really good information and made excellent suggestions. Based on this last post of yours something that I would be most concerned about is what your O2 saturations are doing when you are doing your normal activities of daily living. You mentioned becoming quite short of breath when you walk a short distance. That is worrying. My suggestion would be to ask your doctor for at the very least a 6 minute walk to get an idea of what your oxygen levels do when you move around. Though you may not be anxious to use oxygen throughout your day, if you need it you will be amazed at how much better you feel when you use it. One thing you mentioned really resonated with me. The weather. I think most people with lung disease are very sensitive to changes in the weather. For me, I feel lousy (tired, short of breath, coughing more) on the day when a front is passing through and the barometric pressure is changing. I discovered that many of us have this when I was in pulmonary rehab and I mentioned it to someone. Steve (who had been battling lung disease for years at that point) just shook his head and said, yes I always feel the worst on the day the weather changes. It was nice to have that validation and know that it wasn't all in my head. Stick around and ask whatever questions come to mind. We're all in the same boat and try to help each other as best we can. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Marilynn <candmjackson@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, June 3, 2009 8:24:38 PMSubject: Re: Re: Advice needed Bruce: I want to thank you for responding. My pulmonologist referred to idiopathic pulmonary fibrosis. I am on oxygen at night only. The sleep study revealed a drop into the low 80's, but did not indicate sleep apnea. I have not yet had a walk test, so I don't know how low I would drop, but on days like today I get very short of breath in a short distance. The prednisone dose is 60mg qd with the repeat PFT and CT scheduled for the 26th of this month. We were talking of the RHC prior to the second CT at which time the doctor stopped talking about the PH and seemed more intent on dealing with the PF. So at this time I still don't have a definite diagnosis of either, just more testing. I seem to have more trouble on days that we have storm systems move through and the atmospheric pressure is low and the humidity high. Is this normaly associated with PF? FYI I live in Colorado, but not in the mountains. Thank you again for responding, it really helps to have someone who has gone through this to help me to understand. Craig From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Advice neededTo: Breathe-Support@ yahoogroups. comDate: Wednesday, June 3, 2009, 2:06 PM CraigSome does and some doesn't. Ok, my first piece of advice which I wouldgive to everyone. I don't know if your pulmonologist is connected to oneof the teaching hospitals with an Interstitial Lung Disease specialty ornot. But, if not, I'd absolutely recommend a second opinion from such afacility as one of the IPF Centers of Excellence. Here is a listing:www.ipfnet.orgNow, I'm a bit disturbed by the fact you haven't yet had a right heartcatheter. That is the ONLY way to get a true accurate diagnosis ofPulmonary Hypertension. If that does indicate pulmonary hypertension,then I'd try to find a cardiologist specializing in that as well andthere aren't that many. But, here is a site to find such a specialist.http://www.phassoci ation.org/ Find_A_Doctor/You're dealing with two diseases that the average pulmonologist and theaverage cardiologist are not the experts in. Now, you may be lucky andhave hit upon one with lots of PF experience, although the lack of aheart catheter after an echocardiogram which indicated high pulmonaryartery pressure disturbs me. All the CT's and sleep study and everythingelse and I don't understand why that wasn't done.There are mixed feelings on the bronchoscopy, but you've already had itso those are not now relevant. A biopsy, generall VATS as opposed totraditional open lung biopsy, is the best way to determine the specificinterstitial lung disease you have. But it is also a very invasiveprocedure. Before doing one you need to have all the information andknow what is being looked for and how that information would be used.Expecting changes after one week of prednisone is a bit impatient. Now,with all the inflammation and other abnormal readings, I also wonder ifyou've been given a complete battery of tests for connective tissue orautoimmune diseases. If not, that is essential. That could uncover anunderlying cause or eliminate one.You're saying pulmonary fibrosis, but has the doctor indicated whichtype of the disease he believes from the CT's? Or did they not give thatmuch information. We tend to lump PF and it consists of over 200diseases, some very different from others.You're doing the right thing by trying to educate yourself. You're goingto face decisions and choices and you must take control of your medicalcare. You mentioned prednisone. What dosage? What is the plan ofPrednisone? Were you put on Imuran as well? Were you told about the sideeffects and given meds to help offset some of them and told otherpreventative measures?How is your oxygen saturation during a six minute walk? I'm assuming itstays over 90% as you don't mention being on oxygen. How were youroxygen levels during your sleep study?>> In March of this year I was diagnosed with pulmonary hypertensionbased on an echocardiogram. I was referred to a local pulmonologist forfollow-up.. This physician felt that the cause of the PH was sleepapnea and so scheduled a sleep study. When the results came backnegative he rescheduled the echocardiogram and a repeat CT of the lung,the initial done during a hospitalization in March with dx of pneumoniaand influenza.> Based on the CT scan being almost identical to the one performed 2months earlier this physician then scheduled me for a bronchoscopy. This was done just a week ago. In reviewing the results he noted anelevation of leukocytes and neutrophils in the bronchial wash, and thecytology report and the pathology report both indicated chronicinflammation. He feels that this indicates pulmonary fibrosis. He hasstarted me on Prednisone with scheduled repeat CT and pulmonary functiontest the end of the month. If no change he plans on doing an openbiopsy. Does is conclusions sound valid? Is he taking the rightapproach? From my reading I know that PF can lead to PH, so I knowthat I still need to have a right heart cath to confirm PH. After oneweek on prednisone I am not noticing any changes, am I being toimpatient?>>> Craig> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 Beth now that you mention it, when i was still working, sometimes the kids in the classroom would change their behaviors with changes in the weather, maybe it affects everyone Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Advice neededTo: Breathe-Support Date: Wednesday, June 3, 2009, 8:48 PM Craig, Good evening and welcome! I'm so sorry that you had reason to look for a group like this but since you did I'm glad that you found us. There is nothing like an uncommon disease to make you feel isolated and bewildered. Bruce gave you some really good information and made excellent suggestions. Based on this last post of yours something that I would be most concerned about is what your O2 saturations are doing when you are doing your normal activities of daily living. You mentioned becoming quite short of breath when you walk a short distance. That is worrying. My suggestion would be to ask your doctor for at the very least a 6 minute walk to get an idea of what your oxygen levels do when you move around. Though you may not be anxious to use oxygen throughout your day, if you need it you will be amazed at how much better you feel when you use it. One thing you mentioned really resonated with me. The weather. I think most people with lung disease are very sensitive to changes in the weather. For me, I feel lousy (tired, short of breath, coughing more) on the day when a front is passing through and the barometric pressure is changing. I discovered that many of us have this when I was in pulmonary rehab and I mentioned it to someone. Steve (who had been battling lung disease for years at that point) just shook his head and said, yes I always feel the worst on the day the weather changes. It was nice to have that validation and know that it wasn't all in my head. Stick around and ask whatever questions come to mind. We're all in the same boat and try to help each other as best we can. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Marilynn <candmjackson@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, June 3, 2009 8:24:38 PMSubject: Re: Re: Advice needed Bruce: I want to thank you for responding. My pulmonologist referred to idiopathic pulmonary fibrosis. I am on oxygen at night only. The sleep study revealed a drop into the low 80's, but did not indicate sleep apnea. I have not yet had a walk test, so I don't know how low I would drop, but on days like today I get very short of breath in a short distance. The prednisone dose is 60mg qd with the repeat PFT and CT scheduled for the 26th of this month. We were talking of the RHC prior to the second CT at which time the doctor stopped talking about the PH and seemed more intent on dealing with the PF. So at this time I still don't have a definite diagnosis of either, just more testing. I seem to have more trouble on days that we have storm systems move through and the atmospheric pressure is low and the humidity high. Is this normaly associated with PF? FYI I live in Colorado, but not in the mountains. Thank you again for responding, it really helps to have someone who has gone through this to help me to understand. Craig From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Advice neededTo: Breathe-Support@ yahoogroups. comDate: Wednesday, June 3, 2009, 2:06 PM CraigSome does and some doesn't. Ok, my first piece of advice which I wouldgive to everyone. I don't know if your pulmonologist is connected to oneof the teaching hospitals with an Interstitial Lung Disease specialty ornot. But, if not, I'd absolutely recommend a second opinion from such afacility as one of the IPF Centers of Excellence. Here is a listing:www.ipfnet.orgNow, I'm a bit disturbed by the fact you haven't yet had a right heartcatheter. That is the ONLY way to get a true accurate diagnosis ofPulmonary Hypertension. If that does indicate pulmonary hypertension,then I'd try to find a cardiologist specializing in that as well andthere aren't that many. But, here is a site to find such a specialist.http://www.phassoci ation.org/ Find_A_Doctor/You're dealing with two diseases that the average pulmonologist and theaverage cardiologist are not the experts in. Now, you may be lucky andhave hit upon one with lots of PF experience, although the lack of aheart catheter after an echocardiogram which indicated high pulmonaryartery pressure disturbs me. All the CT's and sleep study and everythingelse and I don't understand why that wasn't done.There are mixed feelings on the bronchoscopy, but you've already had itso those are not now relevant. A biopsy, generall VATS as opposed totraditional open lung biopsy, is the best way to determine the specificinterstitial lung disease you have. But it is also a very invasiveprocedure. Before doing one you need to have all the information andknow what is being looked for and how that information would be used.Expecting changes after one week of prednisone is a bit impatient. Now,with all the inflammation and other abnormal readings, I also wonder ifyou've been given a complete battery of tests for connective tissue orautoimmune diseases. If not, that is essential. That could uncover anunderlying cause or eliminate one.You're saying pulmonary fibrosis, but has the doctor indicated whichtype of the disease he believes from the CT's? Or did they not give thatmuch information. We tend to lump PF and it consists of over 200diseases, some very different from others.You're doing the right thing by trying to educate yourself. You're goingto face decisions and choices and you must take control of your medicalcare. You mentioned prednisone. What dosage? What is the plan ofPrednisone? Were you put on Imuran as well? Were you told about the sideeffects and given meds to help offset some of them and told otherpreventative measures?How is your oxygen saturation during a six minute walk? I'm assuming itstays over 90% as you don't mention being on oxygen. How were youroxygen levels during your sleep study?>> In March of this year I was diagnosed with pulmonary hypertensionbased on an echocardiogram. I was referred to a local pulmonologist forfollow-up.. This physician felt that the cause of the PH was sleepapnea and so scheduled a sleep study. When the results came backnegative he rescheduled the echocardiogram and a repeat CT of the lung,the initial done during a hospitalization in March with dx of pneumoniaand influenza.> Based on the CT scan being almost identical to the one performed 2months earlier this physician then scheduled me for a bronchoscopy. This was done just a week ago. In reviewing the results he noted anelevation of leukocytes and neutrophils in the bronchial wash, and thecytology report and the pathology report both indicated chronicinflammation. He feels that this indicates pulmonary fibrosis. He hasstarted me on Prednisone with scheduled repeat CT and pulmonary functiontest the end of the month. If no change he plans on doing an openbiopsy. Does is conclusions sound valid? Is he taking the rightapproach? From my reading I know that PF can lead to PH, so I knowthat I still need to have a right heart cath to confirm PH. After oneweek on prednisone I am not noticing any changes, am I being toimpatient?>>> Craig> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 Beth now that you mention it, when i was still working, sometimes the kids in the classroom would change their behaviors with changes in the weather, maybe it affects everyone Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Advice neededTo: Breathe-Support Date: Wednesday, June 3, 2009, 8:48 PM Craig, Good evening and welcome! I'm so sorry that you had reason to look for a group like this but since you did I'm glad that you found us. There is nothing like an uncommon disease to make you feel isolated and bewildered. Bruce gave you some really good information and made excellent suggestions. Based on this last post of yours something that I would be most concerned about is what your O2 saturations are doing when you are doing your normal activities of daily living. You mentioned becoming quite short of breath when you walk a short distance. That is worrying. My suggestion would be to ask your doctor for at the very least a 6 minute walk to get an idea of what your oxygen levels do when you move around. Though you may not be anxious to use oxygen throughout your day, if you need it you will be amazed at how much better you feel when you use it. One thing you mentioned really resonated with me. The weather. I think most people with lung disease are very sensitive to changes in the weather. For me, I feel lousy (tired, short of breath, coughing more) on the day when a front is passing through and the barometric pressure is changing. I discovered that many of us have this when I was in pulmonary rehab and I mentioned it to someone. Steve (who had been battling lung disease for years at that point) just shook his head and said, yes I always feel the worst on the day the weather changes. It was nice to have that validation and know that it wasn't all in my head. Stick around and ask whatever questions come to mind. We're all in the same boat and try to help each other as best we can. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Marilynn <candmjackson@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, June 3, 2009 8:24:38 PMSubject: Re: Re: Advice needed Bruce: I want to thank you for responding. My pulmonologist referred to idiopathic pulmonary fibrosis. I am on oxygen at night only. The sleep study revealed a drop into the low 80's, but did not indicate sleep apnea. I have not yet had a walk test, so I don't know how low I would drop, but on days like today I get very short of breath in a short distance. The prednisone dose is 60mg qd with the repeat PFT and CT scheduled for the 26th of this month. We were talking of the RHC prior to the second CT at which time the doctor stopped talking about the PH and seemed more intent on dealing with the PF. So at this time I still don't have a definite diagnosis of either, just more testing. I seem to have more trouble on days that we have storm systems move through and the atmospheric pressure is low and the humidity high. Is this normaly associated with PF? FYI I live in Colorado, but not in the mountains. Thank you again for responding, it really helps to have someone who has gone through this to help me to understand. Craig From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Advice neededTo: Breathe-Support@ yahoogroups. comDate: Wednesday, June 3, 2009, 2:06 PM CraigSome does and some doesn't. Ok, my first piece of advice which I wouldgive to everyone. I don't know if your pulmonologist is connected to oneof the teaching hospitals with an Interstitial Lung Disease specialty ornot. But, if not, I'd absolutely recommend a second opinion from such afacility as one of the IPF Centers of Excellence. Here is a listing:www.ipfnet.orgNow, I'm a bit disturbed by the fact you haven't yet had a right heartcatheter. That is the ONLY way to get a true accurate diagnosis ofPulmonary Hypertension. If that does indicate pulmonary hypertension,then I'd try to find a cardiologist specializing in that as well andthere aren't that many. But, here is a site to find such a specialist.http://www.phassoci ation.org/ Find_A_Doctor/You're dealing with two diseases that the average pulmonologist and theaverage cardiologist are not the experts in. Now, you may be lucky andhave hit upon one with lots of PF experience, although the lack of aheart catheter after an echocardiogram which indicated high pulmonaryartery pressure disturbs me. All the CT's and sleep study and everythingelse and I don't understand why that wasn't done.There are mixed feelings on the bronchoscopy, but you've already had itso those are not now relevant. A biopsy, generall VATS as opposed totraditional open lung biopsy, is the best way to determine the specificinterstitial lung disease you have. But it is also a very invasiveprocedure. Before doing one you need to have all the information andknow what is being looked for and how that information would be used.Expecting changes after one week of prednisone is a bit impatient. Now,with all the inflammation and other abnormal readings, I also wonder ifyou've been given a complete battery of tests for connective tissue orautoimmune diseases. If not, that is essential. That could uncover anunderlying cause or eliminate one.You're saying pulmonary fibrosis, but has the doctor indicated whichtype of the disease he believes from the CT's? Or did they not give thatmuch information. We tend to lump PF and it consists of over 200diseases, some very different from others.You're doing the right thing by trying to educate yourself. You're goingto face decisions and choices and you must take control of your medicalcare. You mentioned prednisone. What dosage? What is the plan ofPrednisone? Were you put on Imuran as well? Were you told about the sideeffects and given meds to help offset some of them and told otherpreventative measures?How is your oxygen saturation during a six minute walk? I'm assuming itstays over 90% as you don't mention being on oxygen. How were youroxygen levels during your sleep study?>> In March of this year I was diagnosed with pulmonary hypertensionbased on an echocardiogram. I was referred to a local pulmonologist forfollow-up.. This physician felt that the cause of the PH was sleepapnea and so scheduled a sleep study. When the results came backnegative he rescheduled the echocardiogram and a repeat CT of the lung,the initial done during a hospitalization in March with dx of pneumoniaand influenza.> Based on the CT scan being almost identical to the one performed 2months earlier this physician then scheduled me for a bronchoscopy. This was done just a week ago. In reviewing the results he noted anelevation of leukocytes and neutrophils in the bronchial wash, and thecytology report and the pathology report both indicated chronicinflammation. He feels that this indicates pulmonary fibrosis. He hasstarted me on Prednisone with scheduled repeat CT and pulmonary functiontest the end of the month. If no change he plans on doing an openbiopsy. Does is conclusions sound valid? Is he taking the rightapproach? From my reading I know that PF can lead to PH, so I knowthat I still need to have a right heart cath to confirm PH. After oneweek on prednisone I am not noticing any changes, am I being toimpatient?>>> Craig> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 Craig the 3 docs where i go have not recommended a biopsy the more i read about them in the posts, the happier i am that I can avoid one one of my docs coauthored an article about the dangers of biopsies Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Advice neededTo: Breathe-Support Date: Thursday, June 4, 2009, 9:52 AM CraigCould be....let's see...could be.....a lot of things. I would haveuncertainty based on your diagnosis to this point and the lack ofinformation as to exactly what you have and as to the relationship ofthe various diseases you may have to each other. Thats why I suggest athorough diagnosis and evaluation at a major teaching hospital such asNational Jewish. Prior to that I would not have a biopsy. After that andlearning more then you can decide. I did have one, did get theinformation I wanted, did have pain, am glad I did. However, biopsy isnot the right answer for everyone. You don't know enough yet to know ifits right for you.> >> > In March of this year I was diagnosed with pulmonary hypertension> based on an echocardiogram. I was referred to a local pulmonologistfor> follow-up.. This physician felt that the cause of the PH was sleep> apnea and so scheduled a sleep study. When the results came back> negative he rescheduled the echocardiogram and a repeat CT of thelung,> the initial done during a hospitalization in March with dx ofpneumonia> and influenza.> > Based on the CT scan being almost identical to the one performed 2> months earlier this physician then scheduled me for a bronchoscopy.> This was done just a week ago. In reviewing the results he noted an> elevation of leukocytes and neutrophils in the bronchial wash, and the> cytology report and the pathology report both indicated chronic> inflammation. He feels that this indicates pulmonary fibrosis. He has> started me on Prednisone with scheduled repeat CT and pulmonaryfunction> test the end of the month. If no change he plans on doing an open> biopsy. Does is conclusions sound valid? Is he taking the right> approach? From my reading I know that PF can lead to PH, so I know> that I still need to have a right heart cath to confirm PH. After one> week on prednisone I am not noticing any changes, am I being to> impatient?> >> >> > Craig> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 Craig the 3 docs where i go have not recommended a biopsy the more i read about them in the posts, the happier i am that I can avoid one one of my docs coauthored an article about the dangers of biopsies Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Advice neededTo: Breathe-Support Date: Thursday, June 4, 2009, 9:52 AM CraigCould be....let's see...could be.....a lot of things. I would haveuncertainty based on your diagnosis to this point and the lack ofinformation as to exactly what you have and as to the relationship ofthe various diseases you may have to each other. Thats why I suggest athorough diagnosis and evaluation at a major teaching hospital such asNational Jewish. Prior to that I would not have a biopsy. After that andlearning more then you can decide. I did have one, did get theinformation I wanted, did have pain, am glad I did. However, biopsy isnot the right answer for everyone. You don't know enough yet to know ifits right for you.> >> > In March of this year I was diagnosed with pulmonary hypertension> based on an echocardiogram. I was referred to a local pulmonologistfor> follow-up.. This physician felt that the cause of the PH was sleep> apnea and so scheduled a sleep study. When the results came back> negative he rescheduled the echocardiogram and a repeat CT of thelung,> the initial done during a hospitalization in March with dx ofpneumonia> and influenza.> > Based on the CT scan being almost identical to the one performed 2> months earlier this physician then scheduled me for a bronchoscopy.> This was done just a week ago. In reviewing the results he noted an> elevation of leukocytes and neutrophils in the bronchial wash, and the> cytology report and the pathology report both indicated chronic> inflammation. He feels that this indicates pulmonary fibrosis. He has> started me on Prednisone with scheduled repeat CT and pulmonaryfunction> test the end of the month. If no change he plans on doing an open> biopsy. Does is conclusions sound valid? Is he taking the right> approach? From my reading I know that PF can lead to PH, so I know> that I still need to have a right heart cath to confirm PH. After one> week on prednisone I am not noticing any changes, am I being to> impatient?> >> >> > Craig> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 Craig the 3 docs where i go have not recommended a biopsy the more i read about them in the posts, the happier i am that I can avoid one one of my docs coauthored an article about the dangers of biopsies Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Advice neededTo: Breathe-Support Date: Thursday, June 4, 2009, 9:52 AM CraigCould be....let's see...could be.....a lot of things. I would haveuncertainty based on your diagnosis to this point and the lack ofinformation as to exactly what you have and as to the relationship ofthe various diseases you may have to each other. Thats why I suggest athorough diagnosis and evaluation at a major teaching hospital such asNational Jewish. Prior to that I would not have a biopsy. After that andlearning more then you can decide. I did have one, did get theinformation I wanted, did have pain, am glad I did. However, biopsy isnot the right answer for everyone. You don't know enough yet to know ifits right for you.> >> > In March of this year I was diagnosed with pulmonary hypertension> based on an echocardiogram. I was referred to a local pulmonologistfor> follow-up.. This physician felt that the cause of the PH was sleep> apnea and so scheduled a sleep study. When the results came back> negative he rescheduled the echocardiogram and a repeat CT of thelung,> the initial done during a hospitalization in March with dx ofpneumonia> and influenza.> > Based on the CT scan being almost identical to the one performed 2> months earlier this physician then scheduled me for a bronchoscopy.> This was done just a week ago. In reviewing the results he noted an> elevation of leukocytes and neutrophils in the bronchial wash, and the> cytology report and the pathology report both indicated chronic> inflammation. He feels that this indicates pulmonary fibrosis. He has> started me on Prednisone with scheduled repeat CT and pulmonaryfunction> test the end of the month. If no change he plans on doing an open> biopsy. Does is conclusions sound valid? Is he taking the right> approach? From my reading I know that PF can lead to PH, so I know> that I still need to have a right heart cath to confirm PH. After one> week on prednisone I am not noticing any changes, am I being to> impatient?> >> >> > Craig> >> Quote Link to comment Share on other sites More sharing options...
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