Guest guest Posted June 10, 2009 Report Share Posted June 10, 2009 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 12, 2009 Report Share Posted June 12, 2009 Hi Beth,I did understand that pulmonary hypertension was one of the ILD's and that ILD is a catch all for the entire group of diseases and is diagnosed until a specific one can be given. However you explained what I had suspected in the best, most succinct way so THANK YOU very much for that. I am still waiting to find out if my latest chest CT scan shows any change in my lungs or pulmonary artery. I will ask about getting an O2 monitor and also heart rate monitor for my tennis. Otherwise I think I am going to try to wait at least a year before being worked up again as the testing and appointments get me so anxious. Of course I'd go in if I felt worse before that time was up if necessary. Thanks for all you do - as I said before this group has already helped me so very much. I am much calmer than I was before chatting with you all. Peggy Ellis (imaginary quilter, tennis duffer, amateur gardener, absent mother - son in Denver, me in Seattle area, pain in the A__ wife ) and oh yes, ILD 2007, 53 year old redhead (sorta) Subject: Re: Re: Peggy ETo: Breathe-Support Date: 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 12, 2009 Report Share Posted June 12, 2009 Peggy, ILD as you know stands for interstitial lung disease. PF stands for pulmonary fibrosis, which literally means lung scarring. There are over 200 different ILD's. Not all of them cause pulmonary fibrosis. (most do, but not all) It's a very complex area as you know and there is still much research to be done. It's odd that Dr.Raghu would say that the terms ILD and PF are interchangeable. Perhaps he's just trying to simplify as doctors sometimes do for lay people, not realizing that we are capable of understanding more. Another one of my pet peeves. LOL Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Friday, June 12, 2009 8:13:49 PMSubject: Re: Re: Peggy E Hi Joyce,I love the phonetic spelling and lack of capitals etc. - reminds me of my son's program when he was in first grade - rite to read. It challenged me more than yours do, so it is all good!I was trained as an operating room scrub while in the military and during those years I worked in ER, OR, Urology. Prior to that I was a nurses aid in a small hospital in South Dakota and 2 nursing homes. After getting out of the military I worked as a medical transcriptionist in Allergy/Immunology. After that I sold computer systems to medical practices for HICFA billing and collections (I may go to Hell for that one - LOL). My last career was Massage Therapy and through that learned a lot about Anatomy and Physiology. Hopefully that'll redeem my karma! ha I've always been interested in the body and ask a lot of questions. I'm a huge believer in alternative medicine and acupuncture. I have had some acupuncture and always ask my Chinese Medicine Doctor to work on my lungs when I see her. Mostly she keeps me centered and feeling less stressed out. I'll ask Dr. Raghu again about the particulars between ILD and PF - he had told me the names were interchangeable. I'm still learning and love to read the actual research article. When I was 21 I had a hydatiform molar pregnancy. In those days there was no internet but I went to the Medical Library and read everything I could get my hands on about it. It helped me get through it as I had never heard of that either. One in every 250,000 pregnancies and I got it. I've never won the lottery though - what's up with that?Going to go on a little excursion now with my loving husband who talked me down at 4am this morning from pulling that wire out of my nose! Gotta love a guy like that right?Peggy E, Never take her too seriously! 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 Peggy...we are lucky to have you join in with Beth who is a nurse as well. Lot's of experience/training between you two. Heck, who needs docs?! Kidding. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! 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 15, 2009 Report Share Posted June 15, 2009 Peggy, Well you certainly have an interesting history that's for sure. The methotrexate connection is one of those things that makes you go hmmmmm. You weren't on it for very long but it does make you wonder doesn't it? I'm glad you found the Cleveland Clinc website helpful. There is definitely a huge learning curve with all this. Have you had a high resolution ct scan and have you seen the reports from it? I would be very curious (as you are) about what it shows. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, June 15, 2009 8:45:49 PMSubject: Re: Re: Acronym Soup - definitions anywhere? Hi Beth,I just read that whole section - Thank you for sending that link. I had been to Cleveland Clinic's web site but had not gotten to that particular page. Mine is an interesting case. I had the hydatiform molar pregnancy in 1979 that persisted and was treated with methyltrexate/ citrivorum rescue for 8 days. Dr. Raghu doesn't think that had anything to do with it but I was pretty ill for a year or so after all of it was over. I used to nearly pass out in grocery stores but wrote it off that I was just recovering from 3 months without any nutrients and also poor eating from the nearly constant vomiting at the time. I had dropped to below healthy weight and anytime I tried to eat my stomach just wanted to spew it back out. I had to eat such small quantities for a long time. Maybe it was lung damage and I just managed to get healthier overtime, I don't know. In 2007 we went on 2 trips to the desert back to back (with only a few days between back in Denver). It was cold and windy in Las Vegas and we were sitting outside a lot watching a tennis tournament. The next week in Scotsdale it was hot and after that trip I got acutely ill. I was wheezing and turning blue and that was what eventually got me into National Jewish several months later. By the time I got to N.J. I was already so much better that I nearly cancelled my appointment. To this day I wonder if I hadn't cancelled that appointment if I wouldn't just think I was the same as I was before the whole incident. My PFT's are nearly the same as they were in 2004 (I had them done after thatching the lawn and getting a little short of breath) and they really haven't changed since those were done. My CT scan is the kicker though. I need to find out exactly what they are seeing in that I think. It's a conundrum for sure. I did check and my insurance will cover a pulseox and possibly a Heart Rate monitor if Dr. Raghu will prescribe them. I am still not interested in getting a biopsy because I am doing well and staying stable and hoping I can just keep on keeping on in this plane for as long as I can. The predictions sure are awful in these web sites though and they always put them at the end. The treatments sound like a lot of 'guesswork' too. I am counting my lucky stars (at least so far) that I don't have any other conditions. I think I'll stay away from tests because they'll eventually find something - LOL.You're a peach - thanks again,Peggy Ellis (big tennis loser today but laughing cuz I can play - really confused the other players but it can be our secret here in the network), ILD 2008, 53 yo From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: Acronym Soup - definitions anywhere?To: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 4:29 PM Peggy, I think you might mean you may have HP and not IPF. IPF (idiopathic pulmonary fibrosis) and HP (Hypersensitivity pneumonitis) are both ILD's (interstitial lung disease). This alphabet soup is all so confusing isn't it? Here's a link to the Cleveland Clinic's website. They've got a really good section on ILD's. http://www.clevelan dclinicmeded. com/medicalpubs/ diseasemanagemen t/pulmonary/ interstitial- lung-disease/ Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: artquilterpeg <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 7:04:09 PMSubject: Re: Acronym Soup - definitions anywhere? Thanks Beth - I had a radiographic assisted biopsy of my breast - that was enough to make me shy from biopsy but my lung really scares me. I guess from reading the articles it would be good to know if you have idiopathic vs hypersensitivity as those treatments are opposite. Right now I'm not on any steroids of any kind but I do think the inhaled steroids did help so maybe I have HP not ILD . . . Peggy E.>> Peggy,> VATS stands for Video Assisted Thoracic Surgery. They do lung biopsies by this method, using scopes and tinier incisions as opposed to the more invasive open lung biopsy.> Both methods however are major surgery and sometimes I think doctors underestimate how difficult recovery from a VATS can be for someone whose lungs are already compromised.> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ____________ _________ _________ __> From: artquilterpeg <artquilterpeg@ ...>> To: Breathe-Support@ yahoogroups. com> Sent: Sunday, June 14, 2009 5:49:41 PM> Subject: Acronym Soup - definitions anywhere?> > > > > > Hi Everyone,> > I was wondering if we have a document with all the acronyms and their full name? I had written a few down and was reading various articles and figured some of them out but still wonder what VATS stands for. > > It might be helpful for us 'newbies' to understand what everyone is saying. > > Thanks,> Peggy Ellis (ILD 2008, 53 y.o. enjoying the cool overcast day here in the PNW)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 MB... oh yeah, go for it. What a great birthday gift to self. I don't know when your birthday is, but Happy Birthday and especially #50. That's a big one, huh. I thought I couldn't stand being 50 years old! Well, I did and now I'm 70. The years go by so quickly. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Where are the best IPF and ILD centers?To: Breathe-Support@ yahoogroups. comDate: Friday, June 19, 2009, 8:49 PM I have IPF. I`d like to visit a center specialized in this.I`m located in Montreal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2009 Report Share Posted June 29, 2009 Hi Beth,I knew you could get intoxicated more easily on planes - the 8000 feet explains it. I guess for most of my adult life I've lived in Denver I hadn't noticed the difference. That must be why people are so tired after flying. My biggest concern now is catching something from someone on the plane or in the airport but I am getting more paranoid about my lungs and breathing all the time. Good for you that you can travel by car - better scenery anyway. :)Yes, I believe in divine intervention - it's happened many times in my life and this is just the last time. If you ever go on a LONG TRIP - plan to be here in June or July - it's a marvelous place in the summer (winters are not so bad but the days are short). Peggy E. From: pikpobedy <pikpobedy (AT) yahoo (DOT) com>Subject: Where are the best IPF and ILD centers?To: Breathe-Support@ yahoogroups. comDate: Friday, June 19, 2009, 8:49 PM I have IPF. I`d like to visit a center specialized in this.I`m located in Montreal. Quote Link to comment Share on other sites More sharing options...
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