Guest guest Posted June 13, 2009 Report Share Posted June 13, 2009 Thanks for the clarification. I think he knows that I am pretty medically literate so I'll ask him to be more specific with me. He then says he can't tell me more because I won't have the biopsy so we go round and round - it's actually quite comical in a sick sort of way! From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: Peggy ETo: Breathe-Support@ yahoogroups. comDate: Thursday, June 11, 2009, 7:51 AM Peggy, Just a brief word about pulmonary hypertension. You seemed to refer to it as an ILD and I just wanted to make sure you know that it is not. Pulmonary hypertension is actually a complication of most ILD's and yes many of us will deal with PH eventually. It is not necessarily inevitable or it can sometimes be delayed to the very very late stages of progression. The key, I've always been told is maintaining our oxygen levels above 90 at all times. This reduces the strain on our hearts and pulmonary arteries. This all underscores the importance of using oxygen if we need it. There is no point in using it if it's not necessary but if you do need it using it will prolong your life and keep you more active and healthier. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: artquilterpeg <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 11, 2009 1:40:55 AMSubject: Re: Peggy E Hi Peggy C,I feel guilty - you should just be Peggy! It sounds like your disease was pretty advanced when you got diagnosed since you got on O2 right away. I'm with you about the biopsy - wouldn't really change anything except the doctor would know more. I made the exact same point with him that your daughter made for you. He was pretty speechless. He thinks I read too much but I believe that if I understand the whole disease better maybe I can find a clue or something that I hadn't thought was important and bring it to his attention. The whole GERD thing was almost an after thought when I saw him and I am hoping and 1/2 believing that it might be the key to my situation. Once he started treating that my symptoms dramatically improved. I was hoping he was going to take the whole diagnosis away but he wouldn't do that! The denial was wonderful though - got me through last year when we moved twice and bought a mess of a house that needed to be fixed. :)Did they ever tell you which ILD you have exactly? I know there is sarcadosis, pulmonary hypertension (which seems to me we all will get eventually from the declining lung capacity)and others. At this point he is grouping me in the idiopathic ILD. Bend my ear all you want. I am all ears as I am trying to learn as fast and as thoroughly as I can to prepare myself for this journey. Thanks for giving me hope that my life can be managed with humility and assistance but not by living in a wheel chair or some such thing. :)Cheers,Peggy (wife, mother, quilter, tennis player, ILD 2007, 53 years old) I want to be more than a diagnosis and age! > >> >> >> > Hi Everyone. I was diagnosed with ILD a year ago but basically> > thought the doctor was wrong so I stayed in denial until recently. I> > might still be in denial on some level. I am seeing a great> > pulmonologist at University of Washington in Seattle who is> > researching GERD and ILD. I had a series of unusual events that> > occurred that led him to think my ILD might be exacerbated by GERD or> > maybe caused? He won't be specific. I get the impression that they> > don't really know if GERD can cause ILD or not. So, this week I am> > undergoing a host of tests for my lungs, heart and GERD. For the most> > part I am doing really well and the only medication I am on is> > omraprazole for the GERD and my hormone replacements. I am able to> > play tennis but if I run for a few balls in a row my heart rate jumps> > up really high. It comes back down again quickly so I have decided> > for now to only play with people who have an understanding of how> > important it is for me to take my time between points even though> > that is breaking the rules of tennis. I am suspecting that I should> > probably switch to another form of exercise that is less 'fast> > start'. Every thing I read about this disease is pretty depressing.> > I'd love to talk to someone else out there who is doing well who and> > is stable. I wonder how long I can stay stable and also if anyone has> > had any success getting their ILD arrested in development by managing> > their GERD.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2009 Report Share Posted June 13, 2009 Yes, I am not educated that way but do know how to understand the lingo. I'll try to help. I did get my husband into the doctor when he had cellulitis and he thinks I am a hero for that. From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: Peggy ETo: Breathe-Support@ yahoogroups. comDate: Thursday, June 11, 2009, 7:51 AM Peggy, Just a brief word about pulmonary hypertension. You seemed to refer to it as an ILD and I just wanted to make sure you know that it is not. Pulmonary hypertension is actually a complication of most ILD's and yes many of us will deal with PH eventually. It is not necessarily inevitable or it can sometimes be delayed to the very very late stages of progression. The key, I've always been told is maintaining our oxygen levels above 90 at all times. This reduces the strain on our hearts and pulmonary arteries. This all underscores the importance of using oxygen if we need it. There is no point in using it if it's not necessary but if you do need it using it will prolong your life and keep you more active and healthier. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: artquilterpeg <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 11, 2009 1:40:55 AMSubject: Re: Peggy E Hi Peggy C,I feel guilty - you should just be Peggy! It sounds like your disease was pretty advanced when you got diagnosed since you got on O2 right away. I'm with you about the biopsy - wouldn't really change anything except the doctor would know more. I made the exact same point with him that your daughter made for you. He was pretty speechless. He thinks I read too much but I believe that if I understand the whole disease better maybe I can find a clue or something that I hadn't thought was important and bring it to his attention. The whole GERD thing was almost an after thought when I saw him and I am hoping and 1/2 believing that it might be the key to my situation. Once he started treating that my symptoms dramatically improved. I was hoping he was going to take the whole diagnosis away but he wouldn't do that! The denial was wonderful though - got me through last year when we moved twice and bought a mess of a house that needed to be fixed. :)Did they ever tell you which ILD you have exactly? I know there is sarcadosis, pulmonary hypertension (which seems to me we all will get eventually from the declining lung capacity)and others. At this point he is grouping me in the idiopathic ILD. Bend my ear all you want. I am all ears as I am trying to learn as fast and as thoroughly as I can to prepare myself for this journey. Thanks for giving me hope that my life can be managed with humility and assistance but not by living in a wheel chair or some such thing. :)Cheers,Peggy (wife, mother, quilter, tennis player, ILD 2007, 53 years old) I want to be more than a diagnosis and age! > >> >> >> > Hi Everyone. I was diagnosed with ILD a year ago but basically> > thought the doctor was wrong so I stayed in denial until recently. I> > might still be in denial on some level. I am seeing a great> > pulmonologist at University of Washington in Seattle who is> > researching GERD and ILD. I had a series of unusual events that> > occurred that led him to think my ILD might be exacerbated by GERD or> > maybe caused? He won't be specific. I get the impression that they> > don't really know if GERD can cause ILD or not. So, this week I am> > undergoing a host of tests for my lungs, heart and GERD. For the most> > part I am doing really well and the only medication I am on is> > omraprazole for the GERD and my hormone replacements. I am able to> > play tennis but if I run for a few balls in a row my heart rate jumps> > up really high. It comes back down again quickly so I have decided> > for now to only play with people who have an understanding of how> > important it is for me to take my time between points even though> > that is breaking the rules of tennis. I am suspecting that I should> > probably switch to another form of exercise that is less 'fast> > start'. Every thing I read about this disease is pretty depressing.> > I'd love to talk to someone else out there who is doing well who and> > is stable. I wonder how long I can stay stable and also if anyone has> > had any success getting their ILD arrested in development by managing> > their GERD.> >> Quote Link to comment Share on other sites More sharing options...
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