Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 Thanks for the welcome Sher. I checked the morning and found out there is a teaching hospital in Seattle about 7 hours away. I am going to contact my insurance company and make sure it's covered but I think I can make an appointment there without a referral. I also checked in to getting an oximeter. I live in Rathdrum ID. That's about 6 miles NW of Coeur d' Alene ID and yes I have a pulmodoc that diagnosed me. I think I am going to start calling him the minute man cause that's the amount of time he give me. My name is Sunny Pickel. Yes that's right, my last name is Pickel but at least I didn't grow up with it like my husband whose name is . He was Dick Pickel in school. Luckily he is a big guy and he might have been given many high school swirlees. I am amazed at the support and quality info I have received since I signed up. Everyone here is just a blessing. > > rpickel (what is your name?) > Wow, you have been through so much. I'm sorry for the plates you have to juggle. One good thing tho' is you are in the right place for support and info. > In my case, it wasn't the lung function lost it was that the oxygen level in my blood was not enough...our levels should be above 90-91 all the time. O2 level is measured with an oximeter and many of us have our own. They can be purchased for $65 at > www.portablenebs.com they are FDA approved and work well. It's the yellow one. It just clamps on a finger... > SOB (shortness of breath) is certainly a sign you may need 02. > Are you seeing a pulmonologist? > In what State do you live? > Others will reply who have more knowledge than I do. > But welcome, I'll watch for your posts... > MamaSher; 70, IPF 3-06, OR. > Nasturtiums > Don't fret about tomorrow, God is already there! > > ILD/Pulm. Fibrosis > > > > I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 Sher, Rathdrum is in Idaho about 15 miles north of Spokane, WA. It is lovely here. We live at the base of a beautiful mountain and get to see elk, moose, deer, bald eagles, hawks and nature unsullied. There are only about 4,000 people in Rathdrum and everyone we have met has been so friendly. Funny, my husband's name is also Rich. Our closest hospital is in Coeur d' Alene, ID but I usually go in to Spokane where there are four different hospitals. But I think for my second opinion I am going to go to the teaching hospital in Seattle. We moved here from Vancouver, WA and my husband still has lots of family there and in White Salmon. I wonder if depression is part of IPF as today has been a rough one for me. I feel cheated by my doctor for not explaining more. I am not comfortable telling anyone yet as I want to have the other tests and see someone else first so it's just me and my husband. He is in denial most of the time or treats me like I might break any minute. I guess I am just very scared because every one of my illness' have progressed much faster than any of the doctors thought. This IPF thing happened over a much shorter period of time than it seems to have progressed with most others. I mean losing 60% in a year and the nasty systems just started a few months back and get worse every day. Well, I guess I just have to leave it in God's hands. In heaven there are no tears or pain so no worries. Right > > > > From: rpickel1@ > > Subject: Re: ILD/Pulm. Fibrosis > > To: Breathe-Support > > Date: Saturday, February 28, 2009, 4:13 AM > > > > > > > > > > > > > > > > Hi Margaret, > > > > This site is so wonderful. I can't believe I have gotten so many > nice replies so quickly. My name is Sunny and I used to live up to > it but the last few years have slowed down my laugh track. My > pulmdoc found the glass last year but didn't think it worth doing a > biopsy since I did not have any symptoms and had 100% lung function. > I will find out next week if there are more of the nodules than > before. I have seen the ground glass nodules mentioned on some med > sites. I think maybe webmd but I had googled ILD and looked at a lot > of sites. They did tell me I had COPD last year and put me on oxygen > but I improved so much in 5 months he took me off it. My O2 at rest > is about 98% but drops significantly when walking. I think he is > just waiting for the CT and sputum reports before he starts any > treatment. Since I am already on Prednisone and that seems to be the > first line of treatment for ILD I think he's just being conservative > then again he > > only spent about 2 minutes with me and seemed confused and a > little angry when I started crying after the diagnoses. When he said > I had already lost 60% lung capacity I was freaked. My disease seems > to be progressing much more rapidly then usual. I can deal with the > shortness of breath much easier than I can the chest pain and > coughing. I am hoping he will do something about that when I see him > next. I am also considering getting a second opinion since my doc > doesn't seem to have time or compassion. Don't hesitate to write if > you think I can help in any way. > > > > Sunny > > > > > > > > > > From: Margaret McConnell > > Sent: Friday, February 27, 2009 10:21 PM > > To: Breathe-Support@ yahoogroups. com > > Subject: Re: ILD/Pulm. Fibrosis > > > > > > > > > > > > Hi 'rpickel', do you have another name? > > > > You are the first that I have heard use the term 'ground glass' on > this board, that was one of my first PH symptoms. I was diagnosed > with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at > 43% lung capacity the first time they gave me a PFT. They called my > pulmonologist immediately and sent me home with oxygen 24/7 right > then at 2lt. We say that we are all different but I would say from my > experience that you need oxygen NOW, especially with all of your > other physical problems. Our bodies need the oxygen to function and > heal properly. I do not have GERD or any autoimmune disease but > others on the board do and can tell you more about them. > > > > I am relatively new on the board but can tell you that there is > alot of information to be found for your questions. I hope they give > you oxygen on your next visit, I have a nifty liquid oxygen back > pack. I was very active before also. I would also add not to rush or > be in a hurry, allow extra time and go slow, breath in through your > nose and out through pursed lips so that you don't end up gasping > like a fish out of water...like I did... > > > > Margaret > > > > > > > > > > > > From: " rpickel1 (AT) msn (DOT) com " > > To: Breathe-Support@ yahoogroups. com > > Sent: Friday, February 27, 2009 8:05:21 PM > > Subject: ILD/Pulm. Fibrosis > > > > > > > > > > I have just been told by my pulmonologist that I have Idiopathic > Interstitial Lung Disease and that I have lost 60% of my lung > function. I also have ground glasslike nodules in my lungs and much > scarring. I am a 51 year old female who until 4 years ago had an > extremely active life. Then it all started with seizures, headaches, > joint pain and fatigue. After many, many tests I was told I had > Lupus then shortly after was diagnosed with Sjogrens then arthritis. > Lots of auto immune stuff. I have been on Prednisone every since.. > Without it the pain is just too much. My sed rate and CRP are always > a mess. Then my right thyroid grew a huge benign tumor which had to > be removed and now have to take synthroid for that. I have had 4 > gastric bleeding hPylori bacteria ulcers in the past four years. I > am currently recovering from the last. Scope showed the ulcer gone > but the bacteria still very much there. The the gastro doc told me I > have > > Barrett's Disease probably caused by my GERD which they can not > seem to get under control. The odds are 1 in 100 people's Barrett's > will turn cancerous. There is no treatment once that happens. But > then again out of the millions of people in the US only 100,000 get > Barrett's. It is supposed to be a slow progressive disease but I was > clear then 2 months later my throat is speckled with Barrett's. That > is one of the reasons I am so worried about the ILD diagnoses. Until > 3 months ago my lungs felt fine. Now I have a hacking cough with > lots of sputum, my lungs hurt, I cough up blood and upon awaking in > the morning I feel like I'm drowning. I have read that ILD is a slow > progressive disease as well but it doesn't seem to be that way with > me. I read that ILD can be caused by GERD and auto immune diseases. > Does any one know if this is accurate? They haven't put me on oxygen > but I am having a whole bunch of other tests done next week. Does > > any one have a guess as to how much lung function I will lose > before they put me on oxygen? Any information about ILD that anyone > can share would help. My doctor is always so in and out that I feel > totally adrift. Thank you. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 Sorry for the confusion, yes it's Idaho not Oregon. My mind hasn't been very clear since they so abruptly gave me the diagnoses. He spent about 3 minutes with me when I first arrived asking about my symtoms, listened to my lungs and then sent me to others for a battery of tests. He didn't give me any of the results just that I had Idiopathic Interstitial Lung Disease/Pulm. Fibrosis and that I only had 40% lung capcity left then he walked out. I had to find this site just to try and understand what he was talking about. He ordered a CT and Sputum test but never discussed what my O2 stats were with movement. And told me to come back in 1 month. With the way this thing is progressing I am very uncomfortable with waiting that long. He didn't even address the coughing up blood point. I can understand from what I have read here, WebMD and other sites that this is supposed to be a slow progressive disease but does that factor in a compromised immune system? I just want some answers now. The next month is going to last forever. > > > > rpickel (what is your name?) > > Wow, you have been through so much. I'm sorry for the plates you > have to juggle. One good thing tho' is you are in the right place for > support and info. > > In my case, it wasn't the lung function lost it was that the oxygen > level in my blood was not enough...our levels should be above 90- 91 > all the time. O2 level is measured with an oximeter and many of us > have our own. They can be purchased for $65 at > > www.portablenebs.com they are FDA approved and work well. It's > the yellow one. It just clamps on a finger... > > SOB (shortness of breath) is certainly a sign you may need 02. > > Are you seeing a pulmonologist? > > In what State do you live? > > Others will reply who have more knowledge than I do. > > But welcome, I'll watch for your posts... > > MamaSher; 70, IPF 3-06, OR. > > Nasturtiums > > Don't fret about tomorrow, God is already there! > > > > ILD/Pulm. Fibrosis > > > > > > > > I have just been told by my pulmonologist that I have Idiopathic > Interstitial Lung Disease and that I have lost 60% of my lung > function. I also have ground glasslike nodules in my lungs and much > scarring. I am a 51 year old female who until 4 years ago had an > extremely active life. Then it all started with seizures, headaches, > joint pain and fatigue. After many, many tests I was told I had > Lupus then shortly after was diagnosed with Sjogrens then arthritis. > Lots of auto immune stuff. I have been on Prednisone every since. > Without it the pain is just too much. My sed rate and CRP are always > a mess. Then my right thyroid grew a huge benign tumor which had to > be removed and now have to take synthroid for that. I have had 4 > gastric bleeding hPylori bacteria ulcers in the past four years. I > am currently recovering from the last. Scope showed the ulcer gone > but the bacteria still very much there. The the gastro doc told me I > have Barrett's Disease probably caused by my GERD which they can not > seem to get under control. The odds are 1 in 100 people's Barrett's > will turn cancerous. There is no treatment once that happens. But > then again out of the millions of people in the US only 100,000 get > Barrett's. It is supposed to be a slow progressive disease but I was > clear then 2 months later my throat is speckled with Barrett's. That > is one of the reasons I am so worried about the ILD diagnoses. Until > 3 months ago my lungs felt fine. Now I have a hacking cough with > lots of sputum, my lungs hurt, I cough up blood and upon awaking in > the morning I feel like I'm drowning. I have read that ILD is a slow > progressive disease as well but it doesn't seem to be that way with > me. I read that ILD can be caused by GERD and auto immune diseases. > Does any one know if this is accurate? They haven't put me on oxygen > but I am having a whole bunch of other tests done next week. Does > any one have a guess as to how much lung function I will lose before > they put me on oxygen? Any information about ILD that anyone can > share would help. My doctor is always so in and out that I feel > totally adrift. Thank you. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 ILD is Interstial Lung Disease There are approx. 200 forms of ILD. The most common is Idiopathic Pulmonary Fibrosis. Others can explain it a lot better than I can and I'm sure they will respond. Keep asking questions, Ginny! I'm still learning too. Ken R. Subject: Re: ILD/Pulm. FibrosisTo: Breathe-Support Date: Saturday, February 28, 2009, 4:04 PM What is ILD? Ginny, IPF6-08,COPD5- 98,Richmond, VA From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, February 28, 2009 4:13:12 AMSubject: Re: ILD/Pulm.. Fibrosis Hi Margaret, This site is so wonderful. I can't believe I have gotten so many nice replies so quickly. My name is Sunny and I used to live up to it but the last few years have slowed down my laugh track. My pulmdoc found the glass last year but didn't think it worth doing a biopsy since I did not have any symptoms and had 100% lung function. I will find out next week if there are more of the nodules than before. I have seen the ground glass nodules mentioned on some med sites. I think maybe webmd but I had googled ILD and looked at a lot of sites. They did tell me I had COPD last year and put me on oxygen but I improved so much in 5 months he took me off it. My O2 at rest is about 98% but drops significantly when walking. I think he is just waiting for the CT and sputum reports before he starts any treatment. Since I am already on Prednisone and that seems to be the first line of treatment for ILD I think he's just being conservative then again he only spent about 2 minutes with me and seemed confused and a little angry when I started crying after the diagnoses. When he said I had already lost 60% lung capacity I was freaked. My disease seems to be progressing much more rapidly then usual. I can deal with the shortness of breath much easier than I can the chest pain and coughing. I am hoping he will do something about that when I see him next. I am also considering getting a second opinion since my doc doesn't seem to have time or compassion. Don't hesitate to write if you think I can help in any way. Sunny From: Margaret McConnell Sent: Friday, February 27, 2009 10:21 PM To: Breathe-Support@ yahoogroups. com Subject: Re: ILD/Pulm. Fibrosis Hi 'rpickel', do you have another name? You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at 43% lung capacity the first time they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.. I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also.. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you don't end up gasping like a fish out of water...like I did... Margaret From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, February 27, 2009 8:05:21 PMSubject: ILD/Pulm. Fibrosis I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since.. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you. 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Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 ILD is Interstial Lung Disease There are approx. 200 forms of ILD. The most common is Idiopathic Pulmonary Fibrosis. Others can explain it a lot better than I can and I'm sure they will respond. Keep asking questions, Ginny! I'm still learning too. Ken R. Subject: Re: ILD/Pulm. FibrosisTo: Breathe-Support Date: Saturday, February 28, 2009, 4:04 PM What is ILD? Ginny, IPF6-08,COPD5- 98,Richmond, VA From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, February 28, 2009 4:13:12 AMSubject: Re: ILD/Pulm.. Fibrosis Hi Margaret, This site is so wonderful. I can't believe I have gotten so many nice replies so quickly. My name is Sunny and I used to live up to it but the last few years have slowed down my laugh track. My pulmdoc found the glass last year but didn't think it worth doing a biopsy since I did not have any symptoms and had 100% lung function. I will find out next week if there are more of the nodules than before. I have seen the ground glass nodules mentioned on some med sites. I think maybe webmd but I had googled ILD and looked at a lot of sites. They did tell me I had COPD last year and put me on oxygen but I improved so much in 5 months he took me off it. My O2 at rest is about 98% but drops significantly when walking. I think he is just waiting for the CT and sputum reports before he starts any treatment. Since I am already on Prednisone and that seems to be the first line of treatment for ILD I think he's just being conservative then again he only spent about 2 minutes with me and seemed confused and a little angry when I started crying after the diagnoses. When he said I had already lost 60% lung capacity I was freaked. My disease seems to be progressing much more rapidly then usual. I can deal with the shortness of breath much easier than I can the chest pain and coughing. I am hoping he will do something about that when I see him next. I am also considering getting a second opinion since my doc doesn't seem to have time or compassion. Don't hesitate to write if you think I can help in any way. Sunny From: Margaret McConnell Sent: Friday, February 27, 2009 10:21 PM To: Breathe-Support@ yahoogroups. com Subject: Re: ILD/Pulm. Fibrosis Hi 'rpickel', do you have another name? You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at 43% lung capacity the first time they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.. I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also.. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you don't end up gasping like a fish out of water...like I did... Margaret From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, February 27, 2009 8:05:21 PMSubject: ILD/Pulm. Fibrosis I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since.. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you. 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Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 ILD is Interstial Lung Disease There are approx. 200 forms of ILD. The most common is Idiopathic Pulmonary Fibrosis. Others can explain it a lot better than I can and I'm sure they will respond. Keep asking questions, Ginny! I'm still learning too. Ken R. Subject: Re: ILD/Pulm. FibrosisTo: Breathe-Support Date: Saturday, February 28, 2009, 4:04 PM What is ILD? Ginny, IPF6-08,COPD5- 98,Richmond, VA From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, February 28, 2009 4:13:12 AMSubject: Re: ILD/Pulm.. Fibrosis Hi Margaret, This site is so wonderful. I can't believe I have gotten so many nice replies so quickly. My name is Sunny and I used to live up to it but the last few years have slowed down my laugh track. My pulmdoc found the glass last year but didn't think it worth doing a biopsy since I did not have any symptoms and had 100% lung function. I will find out next week if there are more of the nodules than before. I have seen the ground glass nodules mentioned on some med sites. I think maybe webmd but I had googled ILD and looked at a lot of sites. They did tell me I had COPD last year and put me on oxygen but I improved so much in 5 months he took me off it. My O2 at rest is about 98% but drops significantly when walking. I think he is just waiting for the CT and sputum reports before he starts any treatment. Since I am already on Prednisone and that seems to be the first line of treatment for ILD I think he's just being conservative then again he only spent about 2 minutes with me and seemed confused and a little angry when I started crying after the diagnoses. When he said I had already lost 60% lung capacity I was freaked. My disease seems to be progressing much more rapidly then usual. I can deal with the shortness of breath much easier than I can the chest pain and coughing. I am hoping he will do something about that when I see him next. I am also considering getting a second opinion since my doc doesn't seem to have time or compassion. Don't hesitate to write if you think I can help in any way. Sunny From: Margaret McConnell Sent: Friday, February 27, 2009 10:21 PM To: Breathe-Support@ yahoogroups. com Subject: Re: ILD/Pulm. Fibrosis Hi 'rpickel', do you have another name? You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at 43% lung capacity the first time they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.. I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also.. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you don't end up gasping like a fish out of water...like I did... Margaret From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, February 27, 2009 8:05:21 PMSubject: ILD/Pulm. Fibrosis I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since.. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you. 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Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 Hi Ken R., I'm really loving this site also. How long since you were diagnosed with Pulmonary Fibrosis? It's been only 8 months for me. I'm learning so much on this site that my doctor has never even mentioned. When I told him I looked up PF on google and it said that the average age to live was 3 to 5 years, he just looked at me and said, well if you take better care of yourself you could live for years and years. Yet, he gave me a copy of my last catscan taken 2 weeks ago, and it compared my progression from last June and it didn't look good to me at all. What a jerk he is! Let me know your status with this disease. God bless, Ginny Ginny, IPF6-08,COPD5-98,Richmond,VA To: Breathe-Support Sent: Sunday, March 1, 2009 4:39:03 AMSubject: Re: ILD/Pulm. Fibrosis ILD is Interstial Lung Disease There are approx. 200 forms of ILD. The most common is Idiopathic Pulmonary Fibrosis. Others can explain it a lot better than I can and I'm sure they will respond. Keep asking questions, Ginny! I'm still learning too. Ken R. From: Ginny <ginnymurphy93@ yahoo.com>Subject: Re: ILD/Pulm. FibrosisTo: Breathe-Support@ yahoogroups. comDate: Saturday, February 28, 2009, 4:04 PM What is ILD? Ginny, IPF6-08,COPD5- 98,Richmond, VA From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, February 28, 2009 4:13:12 AMSubject: Re: ILD/Pulm.. Fibrosis Hi Margaret, This site is so wonderful. I can't believe I have gotten so many nice replies so quickly. My name is Sunny and I used to live up to it but the last few years have slowed down my laugh track.. My pulmdoc found the glass last year but didn't think it worth doing a biopsy since I did not have any symptoms and had 100% lung function. I will find out next week if there are more of the nodules than before. I have seen the ground glass nodules mentioned on some med sites. I think maybe webmd but I had googled ILD and looked at a lot of sites. They did tell me I had COPD last year and put me on oxygen but I improved so much in 5 months he took me off it. My O2 at rest is about 98% but drops significantly when walking. I think he is just waiting for the CT and sputum reports before he starts any treatment. Since I am already on Prednisone and that seems to be the first line of treatment for ILD I think he's just being conservative then again he only spent about 2 minutes with me and seemed confused and a little angry when I started crying after the diagnoses. When he said I had already lost 60% lung capacity I was freaked. My disease seems to be progressing much more rapidly then usual. I can deal with the shortness of breath much easier than I can the chest pain and coughing. I am hoping he will do something about that when I see him next. I am also considering getting a second opinion since my doc doesn't seem to have time or compassion. Don't hesitate to write if you think I can help in any way. Sunny From: Margaret McConnell Sent: Friday, February 27, 2009 10:21 PM To: Breathe-Support@ yahoogroups. com Subject: Re: ILD/Pulm. Fibrosis Hi 'rpickel', do you have another name? You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at 43% lung capacity the first time they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.. I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also.. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you don't end up gasping like a fish out of water...like I did... Margaret From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, February 27, 2009 8:05:21 PMSubject: ILD/Pulm. Fibrosis I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since.. Without it the pain is just too much.. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you. 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Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 Pink Reiterating what Pink Joyce said. Coughing up blood and pain in the lungs are not symptoms of PF. They call for immediate medical attention whether at the doctor's or ER. > > > > > > rpickel (what is your name?) > > > Wow, you have been through so much. I'm sorry for the plates > you > > have to juggle. One good thing tho' is you are in the right place > for > > support and info. > > > In my case, it wasn't the lung function lost it was that the > oxygen > > level in my blood was not enough...our levels should be above 90- > 91 > > all the time. O2 level is measured with an oximeter and many of > us > > have our own. They can be purchased for $65 at > > > www.portablenebs. com they are FDA approved and work well. It's > > the yellow one. It just clamps on a finger... > > > SOB (shortness of breath) is certainly a sign you may need 02. > > > Are you seeing a pulmonologist? > > > In what State do you live? > > > Others will reply who have more knowledge than I do. > > > But welcome, I'll watch for your posts... > > > MamaSher; 70, IPF 3-06, OR. > > > Nasturtiums > > > Don't fret about tomorrow, God is already there! > > > > > > ILD/Pulm. Fibrosis > > > > > > > > > > > > I have just been told by my pulmonologist that I have > Idiopathic > > Interstitial Lung Disease and that I have lost 60% of my lung > > function. I also have ground glasslike nodules in my lungs and > much > > scarring. I am a 51 year old female who until 4 years ago had an > > extremely active life. Then it all started with seizures, > headaches, > > joint pain and fatigue. After many, many tests I was told I had > > Lupus then shortly after was diagnosed with Sjogrens then > arthritis. > > Lots of auto immune stuff. I have been on Prednisone every since. > > Without it the pain is just too much. My sed rate and CRP are > always > > a mess. Then my right thyroid grew a huge benign tumor which had > to > > be removed and now have to take synthroid for that. I have had 4 > > gastric bleeding hPylori bacteria ulcers in the past four years. > I > > am currently recovering from the last. Scope showed the ulcer > gone > > but the bacteria still very much there. The the gastro doc told > me I > > have Barrett's Disease probably caused by my GERD which they can > not > > seem to get under control. The odds are 1 in 100 people's > Barrett's > > will turn cancerous. There is no treatment once that happens. But > > then again out of the millions of people in the US only 100,000 > get > > Barrett's. It is supposed to be a slow progressive disease but I > was > > clear then 2 months later my throat is speckled with Barrett's. > That > > is one of the reasons I am so worried about the ILD diagnoses. > Until > > 3 months ago my lungs felt fine. Now I have a hacking cough with > > lots of sputum, my lungs hurt, I cough up blood and upon awaking > in > > the morning I feel like I'm drowning. I have read that ILD is a > slow > > progressive disease as well but it doesn't seem to be that way > with > > me. I read that ILD can be caused by GERD and auto immune > diseases. > > Does any one know if this is accurate? They haven't put me on > oxygen > > but I am having a whole bunch of other tests done next week. Does > > any one have a guess as to how much lung function I will lose > before > > they put me on oxygen? Any information about ILD that anyone can > > share would help. My doctor is always so in and out that I feel > > totally adrift. Thank you. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 > Hi, RPickle Most patients have lost at least 50% of their lung capacity by the time they are diagnosed with PF Is that because we wait too long to see a doctor, thinking we are just out of shape or we are just tired....or maybe the doctor we see just doesn't pick up on it right away...no one knows why it takes so long to get diagnosed. Maybe it is just that we do not feel the symptoms until we have had the disease for a while and lose our lung function...I know it took three months for me to get diagnosed because medical standards require you to see a primary care doc, then with sob symtoms he sends you to a cardiologist for heart testing and if they find nothing it is on to a pulmonologist for lung testing. My lung doctor was excellent, but every test kept coming back normal even though my pulse ox was below 90 and I could barely speak a complete sentence. Not until he had done three Cat Scans (all normal) did he finally order a High Resolution Cat Scan, which showed the scarring and we went on to an open lung biopsy which gave the final answer of PF. You have a lot of autoimmune issues of which PF fits right in there! They keep trying to blame my PF on my having Crohns disease, another autoimmune disease....however my GI says he has never, ever seen Crohns causing PF or any other lung problem in his whole career....so I don't really think it is. Once you get one autoimmune it is possible to develop others...as you and I both have found out. It just means our autoimmune system is out of whack and again, no one knows how to make it work right again either. Most people with PF or any other inflammatory disease will always have a high Sed Rate. It is in itself a marker for high much inflammatory processes are going on inside you. With a patient with Rheumatoid Artheritis, a Sed Rate abnormally high, means their arthritis is very active at that point and is why their pain level is higher than normal, etc. I sure wish you didn't have to suffer with all this, just know you are in good company here and there are a lot of people who have traveled this road ahead of you, that can answer and lend you support ! > > t > From: rpickel1@... > Subject: ILD/Pulm. Fibrosis > To: Breathe-Support > Date: Saturday, February 28, 2009, 12:05 AM > > > > I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have > Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does > any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 > Hi, RPickle Most patients have lost at least 50% of their lung capacity by the time they are diagnosed with PF Is that because we wait too long to see a doctor, thinking we are just out of shape or we are just tired....or maybe the doctor we see just doesn't pick up on it right away...no one knows why it takes so long to get diagnosed. Maybe it is just that we do not feel the symptoms until we have had the disease for a while and lose our lung function...I know it took three months for me to get diagnosed because medical standards require you to see a primary care doc, then with sob symtoms he sends you to a cardiologist for heart testing and if they find nothing it is on to a pulmonologist for lung testing. My lung doctor was excellent, but every test kept coming back normal even though my pulse ox was below 90 and I could barely speak a complete sentence. Not until he had done three Cat Scans (all normal) did he finally order a High Resolution Cat Scan, which showed the scarring and we went on to an open lung biopsy which gave the final answer of PF. You have a lot of autoimmune issues of which PF fits right in there! They keep trying to blame my PF on my having Crohns disease, another autoimmune disease....however my GI says he has never, ever seen Crohns causing PF or any other lung problem in his whole career....so I don't really think it is. Once you get one autoimmune it is possible to develop others...as you and I both have found out. It just means our autoimmune system is out of whack and again, no one knows how to make it work right again either. Most people with PF or any other inflammatory disease will always have a high Sed Rate. It is in itself a marker for high much inflammatory processes are going on inside you. With a patient with Rheumatoid Artheritis, a Sed Rate abnormally high, means their arthritis is very active at that point and is why their pain level is higher than normal, etc. I sure wish you didn't have to suffer with all this, just know you are in good company here and there are a lot of people who have traveled this road ahead of you, that can answer and lend you support ! > > t > From: rpickel1@... > Subject: ILD/Pulm. Fibrosis > To: Breathe-Support > Date: Saturday, February 28, 2009, 12:05 AM > > > > I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have > Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does > any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 Boy I wish I could send your GI guy some literature. I also have Crohn's and PF. Both are caused by my Hermansky-Pudlak Syndrome. Crohn's occurs in about 15 to 20 percent of HPS'ers, and PF occurs in everyone with gene type 1 or 4. There is a link, at least with our disorder. Doctors often talk about disease pathways - the dominos you follow to get to the symptom. Perhaps our disease processes are similar. I've probably asked you this before, but you don't have nystagmus do you? When we're doing the medical trade shows one thing we're trying to beat into the heads of the docs is that you don't have to be blonde and light skinned to have albinism. They always think of albinism as being the stereotype, and thus a lot of our folks with normal skin and hair pigmentation, and only slight eye involvement, get missed. Hermansky-Pudlak Syndrome albinism 02 / PF o6 > > t> > From: rpickel1@ rpickel1@> > Subject: ILD/Pulm. Fibrosis> > To: Breathe-Support > > Date: Saturday, February 28, 2009, 12:05 AM> > > > > > > > I have just been told by my pulmonologist that I have Idiopathic > Interstitial Lung Disease and that I have lost 60% of my lung > function. I also have ground glasslike nodules in my lungs and much > scarring. I am a 51 year old female who until 4 years ago had an > extremely active life. Then it all started with seizures, headaches, > joint pain and fatigue. After many, many tests I was told I had > Lupus then shortly after was diagnosed with Sjogrens then arthritis. > Lots of auto immune stuff. I have been on Prednisone every since. > Without it the pain is just too much. My sed rate and CRP are always > a mess. Then my right thyroid grew a huge benign tumor which had to > be removed and now have to take synthroid for that. I have had 4 > gastric bleeding hPylori bacteria ulcers in the past four years. I > am currently recovering from the last. Scope showed the ulcer gone > but the bacteria still very much there. The the gastro doc told me I > have> > Barrett's Disease probably caused by my GERD which they can not > seem to get under control. The odds are 1 in 100 people's Barrett's > will turn cancerous. There is no treatment once that happens. But > then again out of the millions of people in the US only 100,000 get > Barrett's. It is supposed to be a slow progressive disease but I was > clear then 2 months later my throat is speckled with Barrett's. That > is one of the reasons I am so worried about the ILD diagnoses. Until > 3 months ago my lungs felt fine. Now I have a hacking cough with > lots of sputum, my lungs hurt, I cough up blood and upon awaking in > the morning I feel like I'm drowning. I have read that ILD is a slow > progressive disease as well but it doesn't seem to be that way with > me. I read that ILD can be caused by GERD and auto immune diseases. > Does any one know if this is accurate? They haven't put me on oxygen > but I am having a whole bunch of other tests done next week. Does> > any one have a guess as to how much lung function I will lose > before they put me on oxygen? Any information about ILD that anyone > can share would help. My doctor is always so in and out that I feel > totally adrift. Thank you.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 Boy I wish I could send your GI guy some literature. I also have Crohn's and PF. Both are caused by my Hermansky-Pudlak Syndrome. Crohn's occurs in about 15 to 20 percent of HPS'ers, and PF occurs in everyone with gene type 1 or 4. There is a link, at least with our disorder. Doctors often talk about disease pathways - the dominos you follow to get to the symptom. Perhaps our disease processes are similar. I've probably asked you this before, but you don't have nystagmus do you? When we're doing the medical trade shows one thing we're trying to beat into the heads of the docs is that you don't have to be blonde and light skinned to have albinism. They always think of albinism as being the stereotype, and thus a lot of our folks with normal skin and hair pigmentation, and only slight eye involvement, get missed. Hermansky-Pudlak Syndrome albinism 02 / PF o6 > > t> > From: rpickel1@ rpickel1@> > Subject: ILD/Pulm. Fibrosis> > To: Breathe-Support > > Date: Saturday, February 28, 2009, 12:05 AM> > > > > > > > I have just been told by my pulmonologist that I have Idiopathic > Interstitial Lung Disease and that I have lost 60% of my lung > function. I also have ground glasslike nodules in my lungs and much > scarring. I am a 51 year old female who until 4 years ago had an > extremely active life. Then it all started with seizures, headaches, > joint pain and fatigue. After many, many tests I was told I had > Lupus then shortly after was diagnosed with Sjogrens then arthritis. > Lots of auto immune stuff. I have been on Prednisone every since. > Without it the pain is just too much. My sed rate and CRP are always > a mess. Then my right thyroid grew a huge benign tumor which had to > be removed and now have to take synthroid for that. I have had 4 > gastric bleeding hPylori bacteria ulcers in the past four years. I > am currently recovering from the last. Scope showed the ulcer gone > but the bacteria still very much there. The the gastro doc told me I > have> > Barrett's Disease probably caused by my GERD which they can not > seem to get under control. The odds are 1 in 100 people's Barrett's > will turn cancerous. There is no treatment once that happens. But > then again out of the millions of people in the US only 100,000 get > Barrett's. It is supposed to be a slow progressive disease but I was > clear then 2 months later my throat is speckled with Barrett's. That > is one of the reasons I am so worried about the ILD diagnoses. Until > 3 months ago my lungs felt fine. Now I have a hacking cough with > lots of sputum, my lungs hurt, I cough up blood and upon awaking in > the morning I feel like I'm drowning. I have read that ILD is a slow > progressive disease as well but it doesn't seem to be that way with > me. I read that ILD can be caused by GERD and auto immune diseases. > Does any one know if this is accurate? They haven't put me on oxygen > but I am having a whole bunch of other tests done next week. Does> > any one have a guess as to how much lung function I will lose > before they put me on oxygen? Any information about ILD that anyone > can share would help. My doctor is always so in and out that I feel > totally adrift. Thank you.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 Boy I wish I could send your GI guy some literature. I also have Crohn's and PF. Both are caused by my Hermansky-Pudlak Syndrome. Crohn's occurs in about 15 to 20 percent of HPS'ers, and PF occurs in everyone with gene type 1 or 4. There is a link, at least with our disorder. Doctors often talk about disease pathways - the dominos you follow to get to the symptom. Perhaps our disease processes are similar. I've probably asked you this before, but you don't have nystagmus do you? When we're doing the medical trade shows one thing we're trying to beat into the heads of the docs is that you don't have to be blonde and light skinned to have albinism. They always think of albinism as being the stereotype, and thus a lot of our folks with normal skin and hair pigmentation, and only slight eye involvement, get missed. Hermansky-Pudlak Syndrome albinism 02 / PF o6 > > t> > From: rpickel1@ rpickel1@> > Subject: ILD/Pulm. Fibrosis> > To: Breathe-Support > > Date: Saturday, February 28, 2009, 12:05 AM> > > > > > > > I have just been told by my pulmonologist that I have Idiopathic > Interstitial Lung Disease and that I have lost 60% of my lung > function. I also have ground glasslike nodules in my lungs and much > scarring. I am a 51 year old female who until 4 years ago had an > extremely active life. Then it all started with seizures, headaches, > joint pain and fatigue. After many, many tests I was told I had > Lupus then shortly after was diagnosed with Sjogrens then arthritis. > Lots of auto immune stuff. I have been on Prednisone every since. > Without it the pain is just too much. My sed rate and CRP are always > a mess. Then my right thyroid grew a huge benign tumor which had to > be removed and now have to take synthroid for that. I have had 4 > gastric bleeding hPylori bacteria ulcers in the past four years. I > am currently recovering from the last. Scope showed the ulcer gone > but the bacteria still very much there. The the gastro doc told me I > have> > Barrett's Disease probably caused by my GERD which they can not > seem to get under control. The odds are 1 in 100 people's Barrett's > will turn cancerous. There is no treatment once that happens. But > then again out of the millions of people in the US only 100,000 get > Barrett's. It is supposed to be a slow progressive disease but I was > clear then 2 months later my throat is speckled with Barrett's. That > is one of the reasons I am so worried about the ILD diagnoses. Until > 3 months ago my lungs felt fine. Now I have a hacking cough with > lots of sputum, my lungs hurt, I cough up blood and upon awaking in > the morning I feel like I'm drowning. I have read that ILD is a slow > progressive disease as well but it doesn't seem to be that way with > me. I read that ILD can be caused by GERD and auto immune diseases. > Does any one know if this is accurate? They haven't put me on oxygen > but I am having a whole bunch of other tests done next week. Does> > any one have a guess as to how much lung function I will lose > before they put me on oxygen? Any information about ILD that anyone > can share would help. My doctor is always so in and out that I feel > totally adrift. Thank you.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 /Jan/Rpickle I'm with on this one too as I've run across quite a few people with Crohn's and PF. Now, I can't tell you which causes which or whether they are both caused by the same thing anymore than I can tell answer the chicken or the egg or describe the relationship between GERD and PF. In fact, I'm not sure we can say any autoimmune causes PF as opposed to perhaps them both being caused by the same underlying cause, since we know so little about most autoimmune causes and PF causes. What we do know is that often when we treat one the other tends to stop progressing or progress slower. Just one thing we know for sure and that is the frequency with which many of these diseases occur in the same person is far greater than a coincidental occurence. > > > t > > > From: rpickel1@ rpickel1@ > > > Subject: ILD/Pulm. Fibrosis > > > To: Breathe-Support > > > Date: Saturday, February 28, 2009, 12:05 AM > > > > > > > > > > > > I have just been told by my pulmonologist that I have Idiopathic > > Interstitial Lung Disease and that I have lost 60% of my lung > > function. I also have ground glasslike nodules in my lungs and much > > scarring. I am a 51 year old female who until 4 years ago had an > > extremely active life. Then it all started with seizures, headaches, > > joint pain and fatigue. After many, many tests I was told I had > > Lupus then shortly after was diagnosed with Sjogrens then arthritis. > > Lots of auto immune stuff. I have been on Prednisone every since. > > Without it the pain is just too much. My sed rate and CRP are always > > a mess. Then my right thyroid grew a huge benign tumor which had to > > be removed and now have to take synthroid for that. I have had 4 > > gastric bleeding hPylori bacteria ulcers in the past four years. I > > am currently recovering from the last. Scope showed the ulcer gone > > but the bacteria still very much there. The the gastro doc told me I > > have > > > Barrett's Disease probably caused by my GERD which they can not > > seem to get under control. The odds are 1 in 100 people's Barrett's > > will turn cancerous. There is no treatment once that happens. But > > then again out of the millions of people in the US only 100,000 get > > Barrett's. It is supposed to be a slow progressive disease but I was > > clear then 2 months later my throat is speckled with Barrett's. That > > is one of the reasons I am so worried about the ILD diagnoses. Until > > 3 months ago my lungs felt fine. Now I have a hacking cough with > > lots of sputum, my lungs hurt, I cough up blood and upon awaking in > > the morning I feel like I'm drowning. I have read that ILD is a slow > > progressive disease as well but it doesn't seem to be that way with > > me. I read that ILD can be caused by GERD and auto immune diseases. > > Does any one know if this is accurate? They haven't put me on oxygen > > but I am having a whole bunch of other tests done next week. Does > > > any one have a guess as to how much lung function I will lose > > before they put me on oxygen? Any information about ILD that anyone > > can share would help. My doctor is always so in and out that I feel > > totally adrift. Thank you. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 /Jan/Rpickle I'm with on this one too as I've run across quite a few people with Crohn's and PF. Now, I can't tell you which causes which or whether they are both caused by the same thing anymore than I can tell answer the chicken or the egg or describe the relationship between GERD and PF. In fact, I'm not sure we can say any autoimmune causes PF as opposed to perhaps them both being caused by the same underlying cause, since we know so little about most autoimmune causes and PF causes. What we do know is that often when we treat one the other tends to stop progressing or progress slower. Just one thing we know for sure and that is the frequency with which many of these diseases occur in the same person is far greater than a coincidental occurence. > > > t > > > From: rpickel1@ rpickel1@ > > > Subject: ILD/Pulm. Fibrosis > > > To: Breathe-Support > > > Date: Saturday, February 28, 2009, 12:05 AM > > > > > > > > > > > > I have just been told by my pulmonologist that I have Idiopathic > > Interstitial Lung Disease and that I have lost 60% of my lung > > function. I also have ground glasslike nodules in my lungs and much > > scarring. I am a 51 year old female who until 4 years ago had an > > extremely active life. Then it all started with seizures, headaches, > > joint pain and fatigue. After many, many tests I was told I had > > Lupus then shortly after was diagnosed with Sjogrens then arthritis. > > Lots of auto immune stuff. I have been on Prednisone every since. > > Without it the pain is just too much. My sed rate and CRP are always > > a mess. Then my right thyroid grew a huge benign tumor which had to > > be removed and now have to take synthroid for that. I have had 4 > > gastric bleeding hPylori bacteria ulcers in the past four years. I > > am currently recovering from the last. Scope showed the ulcer gone > > but the bacteria still very much there. The the gastro doc told me I > > have > > > Barrett's Disease probably caused by my GERD which they can not > > seem to get under control. The odds are 1 in 100 people's Barrett's > > will turn cancerous. There is no treatment once that happens. But > > then again out of the millions of people in the US only 100,000 get > > Barrett's. It is supposed to be a slow progressive disease but I was > > clear then 2 months later my throat is speckled with Barrett's. That > > is one of the reasons I am so worried about the ILD diagnoses. Until > > 3 months ago my lungs felt fine. Now I have a hacking cough with > > lots of sputum, my lungs hurt, I cough up blood and upon awaking in > > the morning I feel like I'm drowning. I have read that ILD is a slow > > progressive disease as well but it doesn't seem to be that way with > > me. I read that ILD can be caused by GERD and auto immune diseases. > > Does any one know if this is accurate? They haven't put me on oxygen > > but I am having a whole bunch of other tests done next week. Does > > > any one have a guess as to how much lung function I will lose > > before they put me on oxygen? Any information about ILD that anyone > > can share would help. My doctor is always so in and out that I feel > > totally adrift. Thank you. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunny rt , sparrow4@... wrote: > > Quoting " sunnypickel@... " : > > > Joyce, I live in a tiny town called Rathdrum Oregon. My doctors are > > in Spokane WA but we are closer to Coeur d' Alene, ID. How do you > > find a teaching hospital and how do you approach them? Also how much > > does an oximeter cost. We me not working and all the medical bills > > we are in very poor financial shape. I applied for Social Security 3 > > years ago and after 2 denials am waiting on a judge. They say it > > might take another 17 months but with this new diagnoses things may > > go quicker. Do I ask my pulmodoc for a referral for a second opinion > > or my primary? I do not want to make my current pulmo guy mad as it > > took me sooooooooooo long just to see him the first time. You are > > correc the my pulse ox is okay at rest but moving around changes that > > drastically. I also wonder if in the morning or if lying in certain > > positions makes things worse. I wake up drowning out of breath and > > my lungs hurt so bad. It takes quite a while of just sitting up > > before I can draw very much breath at all. It seems like the pain in > > my lungs is much worse lying on my right side. Is this my > > imagination do you think? > > > Sunny, I don't mean to tell you where you live but I live in Blanchard, > Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said > that you live in Oregon. My pulmo dr. is in Spokane. His name is > Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also > new to this list. As far as I can tell the nearest IPF center is at the > University of Wahington near Seattle. I lived on Port Orchard Wa. for > 40 years. My children, grandchildren and greatgrandchild all live > around there. I am planning on selling my house and moving back there. > This summer I hope. I need to be near my children now. Since we are so > close maybe we can meet sometine. Did you say how old you are? Beverley > Joy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Joyce, I think the pain I am having is probably caused by the massive infection they found when they checked my sputum. Anyway now I am on antibiotics so hopefully it will get better. I had my lung ct today and they gave me a cd of the test and I will pick up the narative tomorrow. My friend has an oximeter and we checked my O2. If I am sitting still or only walk a short distance I am okay but after that my SATS drop quickly. I am still uncertain why my doc didn't put me on O2 but I did find out today that he is taking the month of March off so I won't get to talk with him until April. It is very frustrating. Sunny IPF 03/09 > > From: sparrow4@... > Subject: Re: Re: ILD/Pulm. Fibrosis > To: Breathe-Support > Date: Saturday, February 28, 2009, 3:11 PM > > > > > > > Quoting " sunnypickel@ ymail.com " : > > > Joyce, I live in a tiny town called Rathdrum Oregon. My doctors are > > in Spokane WA but we are closer to Coeur d' Alene, ID. How do you > > find a teaching hospital and how do you approach them? Also how much > > does an oximeter cost. We me not working and all the medical bills > > we are in very poor financial shape. I applied for Social Security 3 > > years ago and after 2 denials am waiting on a judge. They say it > > might take another 17 months but with this new diagnoses things may > > go quicker. Do I ask my pulmodoc for a referral for a second opinion > > or my primary? I do not want to make my current pulmo guy mad as it > > took me sooooooooooo long just to see him the first time. You are > > correc the my pulse ox is okay at rest but moving around changes that > > drastically. I also wonder if in the morning or if lying in certain > > positions makes things worse. I wake up drowning out of breath and > > my lungs hurt so bad. It takes quite a while of just sitting up > > before I can draw very much breath at all. It seems like the pain in > > my lungs is much worse lying on my right side. Is this my > > imagination do you think? > > > Sunny, I don't mean to tell you where you live but I live in Blanchard, Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said that you live in Oregon. My pulmo dr. is in Spokane. His name is Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also new to this list. As far as I can tell the nearest IPF center is at the University of Wahington near Seattle. I lived on Port Orchard Wa. for 40 years. My children, grandchildren and greatgrandchild all live around there. I am planning on selling my house and moving back there. This summer I hope. I need to be near my children now. Since we are so close maybe we can meet sometine. Did you say how old you are? Beverley Joy > Quote Link to comment Share on other sites More sharing options...
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