Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 It was this list that alerted me to the fact that n might have MAS. I now have another question. It looks like n has been left with lung issues from the MAS. I know what the doctor is thinking. He is testing n for pulmonary fibrosis. I am not going to have n survive MAS only to be told that it has caused pulmonary fibrosis. From what I have read, there is a 3 year life expectancy with pulmonary fibrosis. Does anyone know about pulmonary fibrosis? Thanks, (n, 17, systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 --, I dont know anything about pulmonary fibrosis, but it sounds scary. I dont know what to say, other than to let you know that I am thinking of you guys and praying that this is NOT the case. Mirian has survived such a tough year, she deserves good news with this testing. hugs Helen and (9,systemic) - In , Price <bc.price@...> wrote: > > It was this list that alerted me to the fact that n might have > MAS. I now have another question. It looks like n has been > left with lung issues from the MAS. I know what the doctor is > thinking. He is testing n for pulmonary fibrosis. I am not > going to have n survive MAS only to be told that it has caused > pulmonary fibrosis. From what I have read, there is a 3 year life > expectancy with pulmonary fibrosis. Does anyone know about pulmonary > fibrosis? Thanks, (n, 17, systemic) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 *(((((((((((((((( Hugs ))))))))))))))))))))))* *Okay.. there are first off, different types of Pulmonary Fibrosis.... and of course, degrees of it as well. * ** *I have it.. I have limited lung functioning from it.. of course.... it's harder on me if I get sick.... however I don't need Oxygen. I do breathing treatments for asthma type stuff but supposedly helps this as well? I found out i had PF in a strange way. I have had asthma for years and years.. no asthma attacks but my PFT never improve all that much. I always saw immunologist/pulminologist and finally, I had a special PFT done... not just the 'run of the mill' blow into this machine but this whole.. chamber that i had to sit in (least it looked like a cute little car at childrens hospital) and do all of these different test... it wasn't painful.. a little psychological discomfort from 'messing' with my breathing and the closed 'car; hooked to stuff that didnt always let me breathe the way Im used to!!! * ** *Anyways, it was still found that no matter what was done, i had limited lung function.. cant rememeber if it was on eth FEV or PPv level...a respirtory therapist explained it all at the time but I don't really recall. Whatever the case, they found that I don't take in as much air or mostly that I don't have as much air to give as the average person... Than when I was in a research study for 'asthma' the pulminologist there suspected PF and explained to me why. He also said that he really thought that if I had it, it was because of my JRA... chronic inflammation that has been uncontrolled and the fact that I have had pnemonia/bronchitis too much for my age.... * ** *So I had to have a CT scan done and got tehe dx which doesn't do much for me. Nothing they can do about it but try and treat any possible symptoms. Now, I can't say if this applies to every case but for me, it doesn't bother me.... my doctors predict that maybe 40 years from now... it might become more of an issue. In other words, as a young adult (aged 28).. i was dx with it about 8 years ago.. but it was suspected earlier so who knows.... whatever the case, it seems that I have adapted to my breathing issues and didn't really detect that it's so abnormal. Kind of reminds me of needing glasses but not realizing that the trees are THAT blurry until it's corrected! I do know one other person with PF. I don't know how old she was... she did pass away but she was really quite old and had it for many years. She was on Oxygen and did all the breathing treatments as well. However, she lived a very very very long time with it but don't know if she had it as a teeanger. * ** *Umm... the only other place I can imageine getting good info about PF is from the scleroderma foundation. Of course, their PF comes from hardening in their lungs however, b/c its a rheumatic disease, it seems that we might have a little more in common in getting information about it. Still... I'm not sure where the 3-year life expectency came from.. even Cystic Fibrosis isnt like that anylonger but.. guess it depends on how severe the PF is...* ** *Good fortune... let us know what comes out of the test.... I* On 9/3/06, hburger64 <hburger64@...> wrote: > > --, > > I dont know anything about pulmonary fibrosis, but it sounds scary. I > dont know what to say, other than to let you know that I am thinking > of you guys and praying that this is NOT the case. > > Mirian has survived such a tough year, she deserves good news with > this testing. > > hugs Helen and (9,systemic) > > - In < %40>, Price < > bc.price@...> wrote: > > > > It was this list that alerted me to the fact that n might have > > MAS. I now have another question. It looks like n has been > > left with lung issues from the MAS. I know what the doctor is > > thinking. He is testing n for pulmonary fibrosis. I am not > > going to have n survive MAS only to be told that it has caused > > pulmonary fibrosis. From what I have read, there is a 3 year life > > expectancy with pulmonary fibrosis. Does anyone know about > pulmonary > > fibrosis? Thanks, (n, 17, systemic) > > > > > -- " I am not sick. I am broken. But I am happy as long as I can paint. " --Frida Kahlo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 Issadora, THANK YOU!!!!!!!!!!!!!!! I knew I would get info from this list. n had the PFT done at the hospital about 10 days, ago. It looked like a little shower stall. She was found to have mild restrictive lung disease. Now they want to give her a CT scan. We found out that the lungs were an issue, when she went out for cross country a couple of weeks, ago. She couldn't catch her breath. She sounds exactly like you. What medications are you on? The pulmonologist mentioned IV steroid pulse therapy, which freaked me out. n just got 1000mg of steroids for 5 days in the hospital for the MAS. She came home on extremely high doses of steroids and we had to wean her down. I don't like the pulmonologist very much. Thank you so much, On Sep 3, 2006, at 11:25 AM, Issadora wrote: > *(((((((((((((((( Hugs ))))))))))))))))))))))* > *Okay.. there are first off, different types of Pulmonary > Fibrosis.... and > of course, degrees of it as well. * > ** > *I have it.. I have limited lung functioning from it.. of > course.... it's > harder on me if I get sick.... however I don't need Oxygen. I do > breathing > treatments for asthma type stuff but supposedly helps this as well? > I found > out i had PF in a strange way. I have had asthma for years and > years.. no > asthma attacks but my PFT never improve all that much. I always saw > immunologist/pulminologist and finally, I had a special PFT done... > not just > the 'run of the mill' blow into this machine but this whole.. > chamber that i > had to sit in (least it looked like a cute little car at childrens > hospital) > and do all of these different test... it wasn't painful.. a little > psychological discomfort from 'messing' with my breathing and the > closed > 'car; hooked to stuff that didnt always let me breathe the way Im > used to!!! > * > ** > *Anyways, it was still found that no matter what was done, i had > limited > lung function.. cant rememeber if it was on eth FEV or PPv level...a > respirtory therapist explained it all at the time but I don't > really recall. > Whatever the case, they found that I don't take in as much air or > mostly > that I don't have as much air to give as the average person... Than > when I > was in a research study for 'asthma' the pulminologist there > suspected PF > and explained to me why. He also said that he really thought that > if I had > it, it was because of my JRA... chronic inflammation that has been > uncontrolled and the fact that I have had pnemonia/bronchitis too > much for > my age.... * > ** > *So I had to have a CT scan done and got tehe dx which doesn't do > much for > me. Nothing they can do about it but try and treat any possible > symptoms. > Now, I can't say if this applies to every case but for me, it > doesn't bother > me.... my doctors predict that maybe 40 years from now... it might > become > more of an issue. In other words, as a young adult (aged 28).. i > was dx with > it about 8 years ago.. but it was suspected earlier so who knows.... > whatever the case, it seems that I have adapted to my breathing > issues and > didn't really detect that it's so abnormal. Kind of reminds me of > needing > glasses but not realizing that the trees are THAT blurry until it's > corrected! > > I do know one other person with PF. I don't know how old she was... > she did > pass away but she was really quite old and had it for many years. > She was on > Oxygen and did all the breathing treatments as well. However, she > lived a > very very very long time with it but don't know if she had it as a > teeanger. > * > ** > *Umm... the only other place I can imageine getting good info about > PF is > from the scleroderma foundation. Of course, their PF comes from > hardening in > their lungs however, b/c its a rheumatic disease, it seems that we > might > have a little more in common in getting information about it. > Still... I'm > not sure where the 3-year life expectency came from.. even Cystic > Fibrosis > isnt like that anylonger but.. guess it depends on how severe the > PF is...* > ** > *Good fortune... let us know what comes out of the test.... > I* > > On 9/3/06, hburger64 <hburger64@...> wrote: > > > > --, > > > > I dont know anything about pulmonary fibrosis, but it sounds > scary. I > > dont know what to say, other than to let you know that I am thinking > > of you guys and praying that this is NOT the case. > > > > Mirian has survived such a tough year, she deserves good news with > > this testing. > > > > hugs Helen and (9,systemic) > > > > - In < %40>, > Price < > > bc.price@...> wrote: > > > > > > It was this list that alerted me to the fact that n might > have > > > MAS. I now have another question. It looks like n has been > > > left with lung issues from the MAS. I know what the doctor is > > > thinking. He is testing n for pulmonary fibrosis. I am not > > > going to have n survive MAS only to be told that it has > caused > > > pulmonary fibrosis. From what I have read, there is a 3 year life > > > expectancy with pulmonary fibrosis. Does anyone know about > > pulmonary > > > fibrosis? Thanks, (n, 17, systemic) > > > > > > > > > > > -- > " I am not sick. I am broken. But I am happy as long as I can paint. " > > --Frida Kahlo > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 , This is a little off the wall, but is n HLA-B27? I think that is the gene. My daughter went through pulmonary function tests two years ago - until she passed them. She was tested for this gene to rule out sarcoidosis. They were also looking at pulmonary fibrosis.... She is fine now and doesn't have either. It turns out she cannot be immune suppressed because the first thing that goes is her lungs; breathing issues. And the chest xrays did show filtrations. ' & a 10 jia/uveitis Price <bc.price@...> wrote: It was this list that alerted me to the fact that n might have MAS. I now have another question. It looks like n has been left with lung issues from the MAS. I know what the doctor is thinking. He is testing n for pulmonary fibrosis. I am not going to have n survive MAS only to be told that it has caused pulmonary fibrosis. From what I have read, there is a 3 year life expectancy with pulmonary fibrosis. Does anyone know about pulmonary fibrosis? Thanks, (n, 17, systemic) --------------------------------- Get your own web address for just $1.99/1st yr. We'll help. Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 Once n has the CT scan and gets the PF confirmed, I would def. go for a 2nd opinion re. pulse steriods. I dont know how each case differers but I just do nebulizer treatments with albuterol and crhonulum? ugh (Intal)... sodium... some other asthma med. I also take pulimicort which is an inhaled steriod and ever so often when I am sick with bronchitis or something, I have to take pred or medrol.... pros and cons there to help with the breathing.... Iam not active in any sports so maybe that is why the doctor thought pulse steriods would help??? at the same time... they can weaken bones and so much else..... =( From my understanding, there isn't much you can do for PF but maybe if their is underlying inflammation, that is what he is after?? In my case, they said it was JRA... inflammation.. scarring from bronchial pnemonia and nothing can be done but treat the symptoms... so I take the asthma meds and have to intervene on any sickness immediately.... I surely hope you get more answers and hopefully something can be done so that she can remain in track... sigh... (((((hugs )))))))... wish I had something good to say!! I haven't seen a specialist in many years b/c of what I was last told but just stay on the meds in case they are doing anything to help... Issadora On 9/3/06, Price <bc.price@...> wrote: > > Issadora, > > THANK YOU!!!!!!!!!!!!!!! I knew I would get info from this list. > > n had the PFT done at the hospital about 10 days, ago. It > looked like a little shower stall. She was found to have mild > restrictive lung disease. Now they want to give her a CT scan. We > found out that the lungs were an issue, when she went out for cross > country a couple of weeks, ago. She couldn't catch her breath. She > sounds exactly like you. > > What medications are you on? The pulmonologist mentioned IV steroid > pulse therapy, which freaked me out. n just got 1000mg of > steroids for 5 days in the hospital for the MAS. She came home on > extremely high doses of steroids and we had to wean her down. I > don't like the pulmonologist very much. Thank you so much, > > On Sep 3, 2006, at 11:25 AM, Issadora wrote: > > > *(((((((((((((((( Hugs ))))))))))))))))))))))* > > *Okay.. there are first off, different types of Pulmonary > > Fibrosis.... and > > of course, degrees of it as well. * > > ** > > *I have it.. I have limited lung functioning from it.. of > > course.... it's > > harder on me if I get sick.... however I don't need Oxygen. I do > > breathing > > treatments for asthma type stuff but supposedly helps this as well? > > I found > > out i had PF in a strange way. I have had asthma for years and > > years.. no > > asthma attacks but my PFT never improve all that much. I always saw > > immunologist/pulminologist and finally, I had a special PFT done... > > not just > > the 'run of the mill' blow into this machine but this whole.. > > chamber that i > > had to sit in (least it looked like a cute little car at childrens > > hospital) > > and do all of these different test... it wasn't painful.. a little > > psychological discomfort from 'messing' with my breathing and the > > closed > > 'car; hooked to stuff that didnt always let me breathe the way Im > > used to!!! > > * > > ** > > *Anyways, it was still found that no matter what was done, i had > > limited > > lung function.. cant rememeber if it was on eth FEV or PPv level...a > > respirtory therapist explained it all at the time but I don't > > really recall. > > Whatever the case, they found that I don't take in as much air or > > mostly > > that I don't have as much air to give as the average person... Than > > when I > > was in a research study for 'asthma' the pulminologist there > > suspected PF > > and explained to me why. He also said that he really thought that > > if I had > > it, it was because of my JRA... chronic inflammation that has been > > uncontrolled and the fact that I have had pnemonia/bronchitis too > > much for > > my age.... * > > ** > > *So I had to have a CT scan done and got tehe dx which doesn't do > > much for > > me. Nothing they can do about it but try and treat any possible > > symptoms. > > Now, I can't say if this applies to every case but for me, it > > doesn't bother > > me.... my doctors predict that maybe 40 years from now... it might > > become > > more of an issue. In other words, as a young adult (aged 28).. i > > was dx with > > it about 8 years ago.. but it was suspected earlier so who knows.... > > whatever the case, it seems that I have adapted to my breathing > > issues and > > didn't really detect that it's so abnormal. Kind of reminds me of > > needing > > glasses but not realizing that the trees are THAT blurry until it's > > corrected! > > > > I do know one other person with PF. I don't know how old she was... > > she did > > pass away but she was really quite old and had it for many years. > > She was on > > Oxygen and did all the breathing treatments as well. However, she > > lived a > > very very very long time with it but don't know if she had it as a > > teeanger. > > * > > ** > > *Umm... the only other place I can imageine getting good info about > > PF is > > from the scleroderma foundation. Of course, their PF comes from > > hardening in > > their lungs however, b/c its a rheumatic disease, it seems that we > > might > > have a little more in common in getting information about it. > > Still... I'm > > not sure where the 3-year life expectency came from.. even Cystic > > Fibrosis > > isnt like that anylonger but.. guess it depends on how severe the > > PF is...* > > ** > > *Good fortune... let us know what comes out of the test.... > > I* > > > > On 9/3/06, hburger64 <hburger64@... <hburger64%40hotmail.com>> > wrote: > > > > > > --, > > > > > > I dont know anything about pulmonary fibrosis, but it sounds > > scary. I > > > dont know what to say, other than to let you know that I am thinking > > > of you guys and praying that this is NOT the case. > > > > > > Mirian has survived such a tough year, she deserves good news with > > > this testing. > > > > > > hugs Helen and (9,systemic) > > > > > > - In < %40>< %40gr > oups.com>, > > Price < > > > bc.price@...> wrote: > > > > > > > > It was this list that alerted me to the fact that n might > > have > > > > MAS. I now have another question. It looks like n has been > > > > left with lung issues from the MAS. I know what the doctor is > > > > thinking. He is testing n for pulmonary fibrosis. I am not > > > > going to have n survive MAS only to be told that it has > > caused > > > > pulmonary fibrosis. From what I have read, there is a 3 year life > > > > expectancy with pulmonary fibrosis. Does anyone know about > > > pulmonary > > > > fibrosis? Thanks, (n, 17, systemic) > > > > > > > > > > > > > > > > > -- > > " I am not sick. I am broken. But I am happy as long as I can paint. " > > > > --Frida Kahlo > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2006 Report Share Posted September 4, 2006 Hi , I think if n¹s issues are having breathing issues with cross country running, she¹s still doing really well. I think there can be other reasons for lung issues after MAS, so I would guess pulmonary fibrosis isn¹t the only diagnosis the doctor is thinking of. You should ask. After Ezra had pneumonitis from methotrexate, his lung function decreased greatly. For almost a year he would get short of breath while swimming or even walking for too long. He has gotten much better, and no one really knows why. These kids take a pounding with flares and complications, but they can have amazing recoveries. My thoughts are with you. ( and Ezra, ten year old systemic) On 9/3/06 2:38 PM, " Price " <bc.price@...> wrote: > > > > > Issadora, > > THANK YOU!!!!!!!!!!!!!!! I knew I would get info from this list. > > n had the PFT done at the hospital about 10 days, ago. It > looked like a little shower stall. She was found to have mild > restrictive lung disease. Now they want to give her a CT scan. We > found out that the lungs were an issue, when she went out for cross > country a couple of weeks, ago. She couldn't catch her breath. She > sounds exactly like you. > > What medications are you on? The pulmonologist mentioned IV steroid > pulse therapy, which freaked me out. n just got 1000mg of > steroids for 5 days in the hospital for the MAS. She came home on > extremely high doses of steroids and we had to wean her down. I > don't like the pulmonologist very much. Thank you so much, > > On Sep 3, 2006, at 11:25 AM, Issadora wrote: > >> > *(((((((((((((((( Hugs ))))))))))))))))))))))* >> > *Okay.. there are first off, different types of Pulmonary >> > Fibrosis.... and >> > of course, degrees of it as well. * >> > ** >> > *I have it.. I have limited lung functioning from it.. of >> > course.... it's >> > harder on me if I get sick.... however I don't need Oxygen. I do >> > breathing >> > treatments for asthma type stuff but supposedly helps this as well? >> > I found >> > out i had PF in a strange way. I have had asthma for years and >> > years.. no >> > asthma attacks but my PFT never improve all that much. I always saw >> > immunologist/pulminologist and finally, I had a special PFT done... >> > not just >> > the 'run of the mill' blow into this machine but this whole.. >> > chamber that i >> > had to sit in (least it looked like a cute little car at childrens >> > hospital) >> > and do all of these different test... it wasn't painful.. a little >> > psychological discomfort from 'messing' with my breathing and the >> > closed >> > 'car; hooked to stuff that didnt always let me breathe the way Im >> > used to!!! >> > * >> > ** >> > *Anyways, it was still found that no matter what was done, i had >> > limited >> > lung function.. cant rememeber if it was on eth FEV or PPv level...a >> > respirtory therapist explained it all at the time but I don't >> > really recall. >> > Whatever the case, they found that I don't take in as much air or >> > mostly >> > that I don't have as much air to give as the average person... Than >> > when I >> > was in a research study for 'asthma' the pulminologist there >> > suspected PF >> > and explained to me why. He also said that he really thought that >> > if I had >> > it, it was because of my JRA... chronic inflammation that has been >> > uncontrolled and the fact that I have had pnemonia/bronchitis too >> > much for >> > my age.... * >> > ** >> > *So I had to have a CT scan done and got tehe dx which doesn't do >> > much for >> > me. Nothing they can do about it but try and treat any possible >> > symptoms. >> > Now, I can't say if this applies to every case but for me, it >> > doesn't bother >> > me.... my doctors predict that maybe 40 years from now... it might >> > become >> > more of an issue. In other words, as a young adult (aged 28).. i >> > was dx with >> > it about 8 years ago.. but it was suspected earlier so who knows.... >> > whatever the case, it seems that I have adapted to my breathing >> > issues and >> > didn't really detect that it's so abnormal. Kind of reminds me of >> > needing >> > glasses but not realizing that the trees are THAT blurry until it's >> > corrected! >> > >> > I do know one other person with PF. I don't know how old she was... >> > she did >> > pass away but she was really quite old and had it for many years. >> > She was on >> > Oxygen and did all the breathing treatments as well. However, she >> > lived a >> > very very very long time with it but don't know if she had it as a >> > teeanger. >> > * >> > ** >> > *Umm... the only other place I can imageine getting good info about >> > PF is >> > from the scleroderma foundation. Of course, their PF comes from >> > hardening in >> > their lungs however, b/c its a rheumatic disease, it seems that we >> > might >> > have a little more in common in getting information about it. >> > Still... I'm >> > not sure where the 3-year life expectency came from.. even Cystic >> > Fibrosis >> > isnt like that anylonger but.. guess it depends on how severe the >> > PF is...* >> > ** >> > *Good fortune... let us know what comes out of the test.... >> > I* >> > >> > On 9/3/06, hburger64 <hburger64@... >> <mailto:hburger64%40hotmail.com> > wrote: >>> > > >>> > > --, >>> > > >>> > > I dont know anything about pulmonary fibrosis, but it sounds >> > scary. I >>> > > dont know what to say, other than to let you know that I am thinking >>> > > of you guys and praying that this is NOT the case. >>> > > >>> > > Mirian has survived such a tough year, she deserves good news with >>> > > this testing. >>> > > >>> > > hugs Helen and (9,systemic) >>> > > >>> > > - In <mailto: %40> >>> < %40>, >> > Price < >>> > > bc.price@...> wrote: >>>> > > > >>>> > > > It was this list that alerted me to the fact that n might >> > have >>>> > > > MAS. I now have another question. It looks like n has been >>>> > > > left with lung issues from the MAS. I know what the doctor is >>>> > > > thinking. He is testing n for pulmonary fibrosis. I am not >>>> > > > going to have n survive MAS only to be told that it has >> > caused >>>> > > > pulmonary fibrosis. From what I have read, there is a 3 year life >>>> > > > expectancy with pulmonary fibrosis. Does anyone know about >>> > > pulmonary >>>> > > > fibrosis? Thanks, (n, 17, systemic) >>>> > > > >>> > > >>> > > >>> > > >> > >> > -- >> > " I am not sick. I am broken. But I am happy as long as I can paint. " >> > >> > --Frida Kahlo >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2006 Report Share Posted September 4, 2006 Hi , Were the doctors concerned with Ezra's decreased lung function after the pneumonitis? Did he have a PFT or Ct scan? Did they prescribe any medication? MAS is rare, and now to have the lungs affected from the MAS is rarer. As far as I can tell, there are no medical articles on the subject. I think you are right. My gut tells me to be protective of n. I won't allow her to become a guinea pig for some pulmonologist that has never had any experience with a child like n. I know we may not get any answers if this is permanent or will it heal. How long was it when Ezra had improvement? (n, 17, systemic) p.s. n is only on mtx. I have not restarted her enbrel since the MAS. I figured that it was quicker acting, and we could always jump back on it. It has crossed my mind whether the lungs might improve if enbrel was re-introduced. The mtx is keeping her arthritis under control. On Sep 4, 2006, at 7:24 AM, wrote: > > Hi , > > I think if n¹s issues are having breathing issues with cross > country > running, she¹s still doing really well. I think there can be other > reasons > for lung issues after MAS, so I would guess pulmonary fibrosis > isn¹t the > only diagnosis the doctor is thinking of. You should ask. After > Ezra had > pneumonitis from methotrexate, his lung function decreased greatly. > For > almost a year he would get short of breath while swimming or even > walking > for too long. He has gotten much better, and no one really knows > why. These > kids take a pounding with flares and complications, but they can have > amazing recoveries. My thoughts are with you. ( and Ezra, ten > year old > systemic) > > On 9/3/06 2:38 PM, " Price " <bc.price@...> wrote: > > > > > > > > > > > Issadora, > > > > THANK YOU!!!!!!!!!!!!!!! I knew I would get info from this list. > > > > n had the PFT done at the hospital about 10 days, ago. It > > looked like a little shower stall. She was found to have mild > > restrictive lung disease. Now they want to give her a CT scan. We > > found out that the lungs were an issue, when she went out for cross > > country a couple of weeks, ago. She couldn't catch her breath. She > > sounds exactly like you. > > > > What medications are you on? The pulmonologist mentioned IV steroid > > pulse therapy, which freaked me out. n just got 1000mg of > > steroids for 5 days in the hospital for the MAS. She came home on > > extremely high doses of steroids and we had to wean her down. I > > don't like the pulmonologist very much. Thank you so much, > > > > On Sep 3, 2006, at 11:25 AM, Issadora wrote: > > > >> > *(((((((((((((((( Hugs ))))))))))))))))))))))* > >> > *Okay.. there are first off, different types of Pulmonary > >> > Fibrosis.... and > >> > of course, degrees of it as well. * > >> > ** > >> > *I have it.. I have limited lung functioning from it.. of > >> > course.... it's > >> > harder on me if I get sick.... however I don't need Oxygen. I do > >> > breathing > >> > treatments for asthma type stuff but supposedly helps this as > well? > >> > I found > >> > out i had PF in a strange way. I have had asthma for years and > >> > years.. no > >> > asthma attacks but my PFT never improve all that much. I > always saw > >> > immunologist/pulminologist and finally, I had a special PFT > done... > >> > not just > >> > the 'run of the mill' blow into this machine but this whole.. > >> > chamber that i > >> > had to sit in (least it looked like a cute little car at > childrens > >> > hospital) > >> > and do all of these different test... it wasn't painful.. a > little > >> > psychological discomfort from 'messing' with my breathing and the > >> > closed > >> > 'car; hooked to stuff that didnt always let me breathe the way Im > >> > used to!!! > >> > * > >> > ** > >> > *Anyways, it was still found that no matter what was done, i had > >> > limited > >> > lung function.. cant rememeber if it was on eth FEV or PPv > level...a > >> > respirtory therapist explained it all at the time but I don't > >> > really recall. > >> > Whatever the case, they found that I don't take in as much air or > >> > mostly > >> > that I don't have as much air to give as the average person... > Than > >> > when I > >> > was in a research study for 'asthma' the pulminologist there > >> > suspected PF > >> > and explained to me why. He also said that he really thought that > >> > if I had > >> > it, it was because of my JRA... chronic inflammation that has > been > >> > uncontrolled and the fact that I have had pnemonia/bronchitis too > >> > much for > >> > my age.... * > >> > ** > >> > *So I had to have a CT scan done and got tehe dx which doesn't do > >> > much for > >> > me. Nothing they can do about it but try and treat any possible > >> > symptoms. > >> > Now, I can't say if this applies to every case but for me, it > >> > doesn't bother > >> > me.... my doctors predict that maybe 40 years from now... it > might > >> > become > >> > more of an issue. In other words, as a young adult (aged 28).. i > >> > was dx with > >> > it about 8 years ago.. but it was suspected earlier so who > knows.... > >> > whatever the case, it seems that I have adapted to my breathing > >> > issues and > >> > didn't really detect that it's so abnormal. Kind of reminds me of > >> > needing > >> > glasses but not realizing that the trees are THAT blurry until > it's > >> > corrected! > >> > > >> > I do know one other person with PF. I don't know how old she > was... > >> > she did > >> > pass away but she was really quite old and had it for many years. > >> > She was on > >> > Oxygen and did all the breathing treatments as well. However, she > >> > lived a > >> > very very very long time with it but don't know if she had it > as a > >> > teeanger. > >> > * > >> > ** > >> > *Umm... the only other place I can imageine getting good info > about > >> > PF is > >> > from the scleroderma foundation. Of course, their PF comes from > >> > hardening in > >> > their lungs however, b/c its a rheumatic disease, it seems > that we > >> > might > >> > have a little more in common in getting information about it. > >> > Still... I'm > >> > not sure where the 3-year life expectency came from.. even Cystic > >> > Fibrosis > >> > isnt like that anylonger but.. guess it depends on how severe the > >> > PF is...* > >> > ** > >> > *Good fortune... let us know what comes out of the test.... > >> > I* > >> > > >> > On 9/3/06, hburger64 <hburger64@... > >> <mailto:hburger64%40hotmail.com> > wrote: > >>> > > > >>> > > --, > >>> > > > >>> > > I dont know anything about pulmonary fibrosis, but it sounds > >> > scary. I > >>> > > dont know what to say, other than to let you know that I am > thinking > >>> > > of you guys and praying that this is NOT the case. > >>> > > > >>> > > Mirian has survived such a tough year, she deserves good > news with > >>> > > this testing. > >>> > > > >>> > > hugs Helen and (9,systemic) > >>> > > > >>> > > - In <mailto: % > 40> > >>> < %40>, > >> > Price < > >>> > > bc.price@...> wrote: > >>>> > > > > >>>> > > > It was this list that alerted me to the fact that n > might > >> > have > >>>> > > > MAS. I now have another question. It looks like n > has been > >>>> > > > left with lung issues from the MAS. I know what the > doctor is > >>>> > > > thinking. He is testing n for pulmonary fibrosis. I > am not > >>>> > > > going to have n survive MAS only to be told that it > has > >> > caused > >>>> > > > pulmonary fibrosis. From what I have read, there is a 3 > year life > >>>> > > > expectancy with pulmonary fibrosis. Does anyone know about > >>> > > pulmonary > >>>> > > > fibrosis? Thanks, (n, 17, systemic) > >>>> > > > > >>> > > > >>> > > > >>> > > > >> > > >> > -- > >> > " I am not sick. I am broken. But I am happy as long as I can > paint. " > >> > > >> > --Frida Kahlo > >> > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2006 Report Share Posted September 4, 2006 , I assume n was initially tested for HLA-B27, but I can't say for sure. I will follow up with our rheumy. He responds quickly to my emails. Thanks, (n, 17,systemic) On Sep 3, 2006, at 3:51 PM, ' Taunton wrote: > , > This is a little off the wall, but is n HLA-B27? I think that > is the gene. My daughter went through pulmonary function tests two > years ago - until she passed them. She was tested for this gene to > rule out sarcoidosis. They were also looking at pulmonary fibrosis.... > She is fine now and doesn't have either. It turns out she cannot be > immune suppressed because the first thing that goes is her lungs; > breathing issues. And the chest xrays did show filtrations. > > ' & a 10 jia/uveitis > > Price <bc.price@...> wrote: > It was this list that alerted me to the fact that n might have > MAS. I now have another question. It looks like n has been > left with lung issues from the MAS. I know what the doctor is > thinking. He is testing n for pulmonary fibrosis. I am not > going to have n survive MAS only to be told that it has caused > pulmonary fibrosis. From what I have read, there is a 3 year life > expectancy with pulmonary fibrosis. Does anyone know about pulmonary > fibrosis? Thanks, (n, 17, systemic) > > > --------------------------------- > Get your own web address for just $1.99/1st yr. We'll help. > Small Business. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2006 Report Share Posted September 4, 2006 Hi , I think there was concern. I was certainly nervous about it. We started to see a pulmonologist regularly, so I guess the doctors felt should it be followed. I remember Ezra went through several hours of pulmonary tests. He was tested in the ³shower stall², he did lots of blowing in lots of tubes. He rode an exercise bike and his lung capacity was tested before and after exercise. He had chest x-rays. It was exhausting for both of us. His lungs showed a capacity less than normal. I was told it was equivalent to someone with mild asthma. It was hard to figure out the cause, since the tests were all done after the pneumonitis, so no one knew if he had decreased lung capacity before that. However, he had never wheezed or had any lung problems that I was aware of before, so it made sense to me that it was caused by the reaction to the mtx. At the time of the testing he was on high doses of steroids. From what I read, the hard part would be tapering the prednisone. That would be when the respiratory issues would come back. As of now he¹s on 4mg and not having any issues with his breathing, thankfully. I would make sure your rheumatologist is aware of what your pulmonologist is looking for. Don¹t let the pulmonologist do anything without consulting your rheumatologist first. That will hopefully lessen the chance of n being used as a guinea pig, as you say. He or she can tell the pulmonologist what the relevant issues are for systemic kids. Other people on this list have given great suggestions as well. Take care. On 9/4/06 11:05 AM, " Price " <bc.price@...> wrote: > > > > > Hi , Were the doctors concerned with Ezra's decreased lung > function after the pneumonitis? Did he have a PFT or Ct scan? Did > they prescribe any medication? > > MAS is rare, and now to have the lungs affected from the MAS is > rarer. As far as I can tell, there are no medical articles on the > subject. I think you are right. My gut tells me to be protective > of n. I won't allow her to become a guinea pig for some > pulmonologist that has never had any experience with a child like > n. I know we may not get any answers if this is permanent or > will it heal. How long was it when Ezra had improvement? > (n, 17, systemic) > > p.s. n is only on mtx. I have not restarted her enbrel since > the MAS. I figured that it was quicker acting, and we could always > jump back on it. It has crossed my mind whether the lungs might > improve if enbrel was re-introduced. The mtx is keeping her > arthritis under control. > > On Sep 4, 2006, at 7:24 AM, wrote: > >> > >> > Hi , >> > >> > I think if n¹s issues are having breathing issues with cross >> > country >> > running, she¹s still doing really well. I think there can be other >> > reasons >> > for lung issues after MAS, so I would guess pulmonary fibrosis >> > isn¹t the >> > only diagnosis the doctor is thinking of. You should ask. After >> > Ezra had >> > pneumonitis from methotrexate, his lung function decreased greatly. >> > For >> > almost a year he would get short of breath while swimming or even >> > walking >> > for too long. He has gotten much better, and no one really knows >> > why. These >> > kids take a pounding with flares and complications, but they can have >> > amazing recoveries. My thoughts are with you. ( and Ezra, ten >> > year old >> > systemic) >> > >> > On 9/3/06 2:38 PM, " Price " <bc.price@... >> <mailto:bc.price%40comcast.net> > wrote: >> > >>> > > >>> > > >>> > > >>> > > >>> > > Issadora, >>> > > >>> > > THANK YOU!!!!!!!!!!!!!!! I knew I would get info from this list. >>> > > >>> > > n had the PFT done at the hospital about 10 days, ago. It >>> > > looked like a little shower stall. She was found to have mild >>> > > restrictive lung disease. Now they want to give her a CT scan. We >>> > > found out that the lungs were an issue, when she went out for cross >>> > > country a couple of weeks, ago. She couldn't catch her breath. She >>> > > sounds exactly like you. >>> > > >>> > > What medications are you on? The pulmonologist mentioned IV steroid >>> > > pulse therapy, which freaked me out. n just got 1000mg of >>> > > steroids for 5 days in the hospital for the MAS. She came home on >>> > > extremely high doses of steroids and we had to wean her down. I >>> > > don't like the pulmonologist very much. Thank you so much, >>> > > >>> > > On Sep 3, 2006, at 11:25 AM, Issadora wrote: >>> > > >>>>> > >> > *(((((((((((((((( Hugs ))))))))))))))))))))))* >>>>> > >> > *Okay.. there are first off, different types of Pulmonary >>>>> > >> > Fibrosis.... and >>>>> > >> > of course, degrees of it as well. * >>>>> > >> > ** >>>>> > >> > *I have it.. I have limited lung functioning from it.. of >>>>> > >> > course.... it's >>>>> > >> > harder on me if I get sick.... however I don't need Oxygen. I do >>>>> > >> > breathing >>>>> > >> > treatments for asthma type stuff but supposedly helps this as >> > well? >>>>> > >> > I found >>>>> > >> > out i had PF in a strange way. I have had asthma for years and >>>>> > >> > years.. no >>>>> > >> > asthma attacks but my PFT never improve all that much. I >> > always saw >>>>> > >> > immunologist/pulminologist and finally, I had a special PFT >> > done... >>>>> > >> > not just >>>>> > >> > the 'run of the mill' blow into this machine but this whole.. >>>>> > >> > chamber that i >>>>> > >> > had to sit in (least it looked like a cute little car at >> > childrens >>>>> > >> > hospital) >>>>> > >> > and do all of these different test... it wasn't painful.. a >> > little >>>>> > >> > psychological discomfort from 'messing' with my breathing and the >>>>> > >> > closed >>>>> > >> > 'car; hooked to stuff that didnt always let me breathe the way Im >>>>> > >> > used to!!! >>>>> > >> > * >>>>> > >> > ** >>>>> > >> > *Anyways, it was still found that no matter what was done, i had >>>>> > >> > limited >>>>> > >> > lung function.. cant rememeber if it was on eth FEV or PPv >> > level...a >>>>> > >> > respirtory therapist explained it all at the time but I don't >>>>> > >> > really recall. >>>>> > >> > Whatever the case, they found that I don't take in as much air or >>>>> > >> > mostly >>>>> > >> > that I don't have as much air to give as the average person... >> > Than >>>>> > >> > when I >>>>> > >> > was in a research study for 'asthma' the pulminologist there >>>>> > >> > suspected PF >>>>> > >> > and explained to me why. He also said that he really thought that >>>>> > >> > if I had >>>>> > >> > it, it was because of my JRA... chronic inflammation that has >> > been >>>>> > >> > uncontrolled and the fact that I have had pnemonia/bronchitis too >>>>> > >> > much for >>>>> > >> > my age.... * >>>>> > >> > ** >>>>> > >> > *So I had to have a CT scan done and got tehe dx which doesn't do >>>>> > >> > much for >>>>> > >> > me. Nothing they can do about it but try and treat any possible >>>>> > >> > symptoms. >>>>> > >> > Now, I can't say if this applies to every case but for me, it >>>>> > >> > doesn't bother >>>>> > >> > me.... my doctors predict that maybe 40 years from now... it >> > might >>>>> > >> > become >>>>> > >> > more of an issue. In other words, as a young adult (aged 28).. i >>>>> > >> > was dx with >>>>> > >> > it about 8 years ago.. but it was suspected earlier so who >> > knows.... >>>>> > >> > whatever the case, it seems that I have adapted to my breathing >>>>> > >> > issues and >>>>> > >> > didn't really detect that it's so abnormal. Kind of reminds me of >>>>> > >> > needing >>>>> > >> > glasses but not realizing that the trees are THAT blurry until >> > it's >>>>> > >> > corrected! >>>>> > >> > >>>>> > >> > I do know one other person with PF. I don't know how old she >> > was... >>>>> > >> > she did >>>>> > >> > pass away but she was really quite old and had it for many years. >>>>> > >> > She was on >>>>> > >> > Oxygen and did all the breathing treatments as well. However, she >>>>> > >> > lived a >>>>> > >> > very very very long time with it but don't know if she had it >> > as a >>>>> > >> > teeanger. >>>>> > >> > * >>>>> > >> > ** >>>>> > >> > *Umm... the only other place I can imageine getting good info >> > about >>>>> > >> > PF is >>>>> > >> > from the scleroderma foundation. Of course, their PF comes from >>>>> > >> > hardening in >>>>> > >> > their lungs however, b/c its a rheumatic disease, it seems >> > that we >>>>> > >> > might >>>>> > >> > have a little more in common in getting information about it. >>>>> > >> > Still... I'm >>>>> > >> > not sure where the 3-year life expectency came from.. even Cystic >>>>> > >> > Fibrosis >>>>> > >> > isnt like that anylonger but.. guess it depends on how severe the >>>>> > >> > PF is...* >>>>> > >> > ** >>>>> > >> > *Good fortune... let us know what comes out of the test.... >>>>> > >> > I* >>>>> > >> > >>>>> > >> > On 9/3/06, hburger64 <hburger64@... >>>>> <mailto:hburger64%40hotmail.com> >>>> > >> <mailto:hburger64%40hotmail.com> > wrote: >>>>>>> > >>> > > >>>>>>> > >>> > > --, >>>>>>> > >>> > > >>>>>>> > >>> > > I dont know anything about pulmonary fibrosis, but it sounds >>>>> > >> > scary. I >>>>>>> > >>> > > dont know what to say, other than to let you know that I am >> > thinking >>>>>>> > >>> > > of you guys and praying that this is NOT the case. >>>>>>> > >>> > > >>>>>>> > >>> > > Mirian has survived such a tough year, she deserves good >> > news with >>>>>>> > >>> > > this testing. >>>>>>> > >>> > > >>>>>>> > >>> > > hugs Helen and (9,systemic) >>>>>>> > >>> > > >>>>>>> > >>> > > - In >>>>>>> <mailto: %40> <mailto: % >> > 40> >>>>> > >>> < %40>, >>>>> > >> > Price < >>>>>>> > >>> > > bc.price@...> wrote: >>>>>>>>> > >>>> > > > >>>>>>>>> > >>>> > > > It was this list that alerted me to the fact that n >> > might >>>>> > >> > have >>>>>>>>> > >>>> > > > MAS. I now have another question. It looks like n >> > has been >>>>>>>>> > >>>> > > > left with lung issues from the MAS. I know what the >> > doctor is >>>>>>>>> > >>>> > > > thinking. He is testing n for pulmonary fibrosis. I >> > am not >>>>>>>>> > >>>> > > > going to have n survive MAS only to be told that it >> > has >>>>> > >> > caused >>>>>>>>> > >>>> > > > pulmonary fibrosis. From what I have read, there is a 3 >> > year life >>>>>>>>> > >>>> > > > expectancy with pulmonary fibrosis. Does anyone know about >>>>>>> > >>> > > pulmonary >>>>>>>>> > >>>> > > > fibrosis? Thanks, (n, 17, systemic) >>>>>>>>> > >>>> > > > >>>>>>> > >>> > > >>>>>>> > >>> > > >>>>>>> > >>> > > >>>>> > >> > >>>>> > >> > -- >>>>> > >> > " I am not sick. I am broken. But I am happy as long as I can >> > paint. " >>>>> > >> > >>>>> > >> > --Frida Kahlo >>>>> > >> > >>>>> > >> > Quote Link to comment Share on other sites More sharing options...
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