Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 To whom it may concern.... Watchword... we are all different. The good doctors check for lots of potential causes. They checked for GERD while I was at National Jewish. They also checked for a lot of other things. They suspect there may even be a genetic component to the cellular NSIP that they THINK I have. If you check out some of the ILD/IPF sites and papers available online you will find there is indeed a lot they do not know about this particular disease family. There are some auto-immune components to it as well, as many members have found out. All we can do is be there to support one another and listen patiently and understandingly to one another. Wouldn't it be nice if they could wrap it up in a cute little package and say 'take two aspirin and call me in the morning'. Unfortunately, it is no where close to that simple. Just dealing with it is so tough for some of us. Take care, each and every one of you. Stefani NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009 > > > > Joy, > > > > Don't beat yourself up like I did. My pulmo doc assured me at first > that my ILD was caused by my smoking but after the lung biopsy both he > and my GI dude concur that it is the aspiration of stomach and > intestinal products in to my lungs that caused the damage. I have > researched it since and more people who have IPF don't and never have > smoked than did. Also there is a tremendous amount of research about > GERD being the leading cause of IPF. > > > > Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04, > Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, > Idaho > > > > > > From: joynoel3208 > > Sent: Saturday, June 20, 2009 5:10 PM > > To: Breathe-Support > > Subject: some causes of IPF > > > > > > > > > > > > I asked my doc's office why I had PAH. She said the following are some > of the offenders... > > Heredity, diet pills, IPF, smoking, there were more, but what > impressed me was the diet pills ... I used to take those things. I used > to smoke and spend time getting burned by the sun. My " sins " are finding > me!!! > > Joy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 Hi Beth,I spent a lot of time on the phone with Carolyn, Dr. Raghu's nurse talking about the GERD and ILD. Although my GERD has been diagnosed after my ILD was diagnosed, they have determined that approximately 40% of people with GERD don't know they have it. In my case my GERD was NOT caused by steroids as I was only on inhaled steroids and I had gotten violently ill (with vomiting) just before I got gravely ill to the point where my 'stamina' dropped through the floor. Of course we'll never know what my O2 sats were during that time but I KNOW in my heart that they were much worse than they were 3 months later at National Jewish when I FINALLY got in to see them and with exertion my O2 sat went to 82% but I felt fine. I had not felt fine in May of '07 when I was turning blue and that was just after getting sick in sdale. At the time I thought I had Valley Fever or some other desert illness. Evidently there are a number of new studies coming out from all around with GERD and ILD. I do not have any other autoimmune disease and am a very healthy person other than the ILD so I am thinking (for myself) that the ILD was caused by the GERD. Maybe they should be checking people for GERD at least as much as they are for Colon Cancer.If GERD is a known cause for some people then maybe catching the GERD in the 40% that don't know they have it might at least help those people. PeggySubject: Re: some causes of IPFTo: Breathe-Support Date: Sunday, June 21, 2009, 4:52 AM Sunny, Just a word of caution here....I'm very happy that your doctors have indentified the cause of your pulmonary fibrosis. In fact your pf is no longer idiopathic. Once the cause is positively identified it becomes, in your case, pulmonary fibrosis caused by gastric aspiration. Now that you've had your surgery, you should not have any further deterioration of your lungs. Here's to that happy outcome right? But to leap from there to say that "tremendous amount of research about GERD being the leading cause of IPF." is overstating a bit. There is research being done and there is some evidence that some IPF could actually be caused, at least in part, by untreated GERD but it's far from conclusive. Peggy E posted abstracts of some of Dr. Rahgu's research and even he states that there is difficulty in identifying GERD as a cause when there are so many other factors in play. It's very much a chicken and egg puzzle. What came first? In my case (though I do not have IPF) my reflux was diagnosed well after my lung disease and my doctors firmly believe the reflux was caused by the months I spent on the high doses of prednisone. Who knows? Unfortunately there is still much to be learned about this relationship. More research is being done and I welcome that. It would be fabulous if we could eliminate some fibrosis by treating GERD early and thoroughly. I just want to make sure that the information on the board is as accurate as we can make it for the sake of all our members. Thanks! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, June 20, 2009 11:01:01 PMSubject: Re: some causes of IPF Joy, Don't beat yourself up like I did. My pulmo doc assured me at first that my ILD was caused by my smoking but after the lung biopsy both he and my GI dude concur that it is the aspiration of stomach and intestinal products in to my lungs that caused the damage. I have researched it since and more people who have IPF don't and never have smoked than did. Also there is a tremendous amount of research about GERD being the leading cause of IPF. Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho From: joynoel3208 Sent: Saturday, June 20, 2009 5:10 PM To: Breathe-Support@ yahoogroups. com Subject: some causes of IPF I asked my doc's office why I had PAH. She said the following are some of the offenders...Heredity, diet pills, IPF, smoking, there were more, but what impressed me was the diet pills ... I used to take those things.. I used to smoke and spend time getting burned by the sun. My "sins" are finding me!!!Joy Quote Link to comment Share on other sites More sharing options...
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