Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 TWO HUGE LESSONS Two lessons for everyone from Joyce. 1-Get a second opinion or more from experts in the disease. Do whatever it takes. It truly is a matter of life and death. If the doctor doesn't make you feel comfortable with the diagnosis then trust your instincts to want more. 2-All of us here have Interstitial Lung Diseases characterized with scarring. However, we are each different. There are over 200 forms of ILD's so far and each of those is accompanied by many many other co-diseases which impact your condition. What is right for one or true for one may well not be for others here. The statistics and everything else you read may not be true for you. It's a very complex set of diseases that we still know so little about. > > > > > > > > I was dx'd with polymyositis in Dec. 1988 (cpk over 15,000), then > > > pulmonary fibrosis the falling summer, then a number of other med. > > > problems to follow - but that's not why I'm here...I stay as active > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Every one should ask there Doc to have the Hypersensitivity pneumonitis antibody panels http://www.medicinenet.com/hypersensitivity_pneumonitis/article.htmhttp://www.nlm.nih.gov/medlineplus/ency/article/000109.htm P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60REMEMBER : All of you on Prednisone'stressed' spelled backwards is 'desserts'If God brings you to it - He will bring you through it.Subject: Joyce's illnessTo: Breathe-Support Date: Tuesday, March 31, 2009, 4:55 PM With the information Joyce has shared with us my best educated guess is that she has "hypersensitivity pneumonitis" . It's caused when a substance that one is allergic or sensitized to is inhaled. This causes inflammation and can eventually cause scarring in the lungs. This is one of the rarer forms of pulmonary fibrosis that is extremely treatable. The first thing to do is to eliminate the cause of the reaction. Joyce has done this by re-homing her birds and even doing things like getting rid of her down pillows and feather bed. She may be taking antibiotics and/or prednisone to relieve any infection and inflammation. It will take time but she will likely regain some of her lung function and may even eventually be able to do without oxygen. It's too early to tell but getting the second opinion and following her new doctors recommendations have probably saved Joyce's life. Thinking about it makes me so happy I could just jump out of my skin! This is the value of a second opinion. And the value of going to a university medical center with doctors who specialize in interstitial lung disease. Can't stress it enough. Don't take one doctors word as gospel. Do your own research and get seen by people who truly understand these illnesses! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: JOYCE RUDY <greycharlie@ q.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, March 31, 2009 4:52:20 PMSubject: Re: Re: Oximeter questions - Bruce... Sher- I don't know what it is called but it is environmental and the trigger-the birds-are gone and so I will not have any further scarring and Dr. Cosgrove said that it looks like I don't have a lot of Permanent damage to my lungs (will know more after biopsy) and it is possible that after a year my lungs may have healed enough that I won't need oxygen any more. Joyce Rudy AZ Re: Oximeter questions - Bruce... JoyceI'm just so thrilled beyond words that your experience there turned outso well and you found doctors who communicated with you and you couldtrust.To everyone, let Joyce serve as an inspiration that if you're notgetting the answers and attention you need, to get somewhere you can.She had to go through so much effort to get to Denver but it wasrewarded. Others have found the same whether its been UAB or Duke orEmorty or any number of other medical schools and hospitals.> > >> > > I was dx'd with polymyositis in Dec. 1988 (cpk over 15,000), then> > pulmonary fibrosis the falling summer, then a number of other med.> > problems to follow - but that's not why I'm here...I stay as active> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 , That's an excellent point, couldn't agree more! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tuesday, March 31, 2009 10:21:42 PMSubject: Re: Joyce's illness Every one should ask there Doc to have the Hypersensitivity pneumonitis antibody panels http://www.medicine net.com/hypersen sitivity_ pneumonitis/ article.htmhttp://www.nlm. nih.gov/medlinep lus/ency/ article/000109. htm P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60REMEMBER : All of you on Prednisone'stressed' spelled backwards is 'desserts'If God brings you to it - He will bring you through it. From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Joyce's illnessTo: Breathe-Support@ yahoogroups. comDate: Tuesday, March 31, 2009, 4:55 PM With the information Joyce has shared with us my best educated guess is that she has "hypersensitivity pneumonitis" . It's caused when a substance that one is allergic or sensitized to is inhaled. This causes inflammation and can eventually cause scarring in the lungs. This is one of the rarer forms of pulmonary fibrosis that is extremely treatable. The first thing to do is to eliminate the cause of the reaction. Joyce has done this by re-homing her birds and even doing things like getting rid of her down pillows and feather bed. She may be taking antibiotics and/or prednisone to relieve any infection and inflammation. It will take time but she will likely regain some of her lung function and may even eventually be able to do without oxygen. It's too early to tell but getting the second opinion and following her new doctors recommendations have probably saved Joyce's life. Thinking about it makes me so happy I could just jump out of my skin! This is the value of a second opinion. And the value of going to a university medical center with doctors who specialize in interstitial lung disease. Can't stress it enough. Don't take one doctors word as gospel. Do your own research and get seen by people who truly understand these illnesses! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: JOYCE RUDY <greycharlie@ q.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, March 31, 2009 4:52:20 PMSubject: Re: Re: Oximeter questions - Bruce... Sher- I don't know what it is called but it is environmental and the trigger-the birds-are gone and so I will not have any further scarring and Dr. Cosgrove said that it looks like I don't have a lot of Permanent damage to my lungs (will know more after biopsy) and it is possible that after a year my lungs may have healed enough that I won't need oxygen any more. Joyce Rudy AZ Re: Oximeter questions - Bruce... JoyceI'm just so thrilled beyond words that your experience there turned outso well and you found doctors who communicated with you and you couldtrust.To everyone, let Joyce serve as an inspiration that if you're notgetting the answers and attention you need, to get somewhere you can.She had to go through so much effort to get to Denver but it wasrewarded. Others have found the same whether its been UAB or Duke orEmorty or any number of other medical schools and hospitals.> > >> > > I was dx'd with polymyositis in Dec. 1988 (cpk over 15,000), then> > pulmonary fibrosis the falling summer, then a number of other med.> > problems to follow - but that's not why I'm here...I stay as active> Quote Link to comment Share on other sites More sharing options...
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