Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 is interstitial lung isease the same as pf. One dr calls it one thing and another calls pf. I have had it for almost 4 yrs and have no cough so to speak but recently breathing is worse and get sortness of breath just talking. Which is weird since 3 months ago in pulmonary rehab i was able to exercise without O2 now need it constantly and was told to boost to 3ltr when short of breath. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2008 Report Share Posted November 27, 2008 Hello Cathy and welcome to our group. As far as I'm aware PF is an interstitial lung disease, but that 'interstitial lung disease' is a blanket term covering other diseases as well. I went without O2 for a long time, but now need it continuously. I'm on 1L at rest and anything up to 6L on exhersion now. Do you have an oxymeter? They're invaluable for finding out your oxygen needs. Love Ze xx (39) dermatomyositis, PF etc for years, pulmonary hypertension 2008. >> is interstitial lung isease the same as pf. One dr calls it one thing > and another calls pf. I have had it for almost 4 yrs and have no cough > so to speak but recently breathing is worse and get sortness of breath > just talking. Which is weird since 3 months ago in pulmonary rehab i > was able to exercise without O2 now need it constantly and was told to > boost to 3ltr when short of breath.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2008 Report Share Posted November 27, 2008 Cathy, Hi and welcome to our little corner of the internet! I'm sorry to hear that your disease seems to have progressed recently. Have they scheduled any new tests? A PFT? an echocardiogram to check for pulmonary hypertesion? It might be worthwhile to ask about this as a sudden increase in sob can also be caused by PH which is a common complication of long term lung disease. You will hear our illnesses referred to by many different names and it is confusing. Interstitial lung disease is a broad group of diseases that cause various degrees of inflammation and scarring in our lungs. The scarring is called fibrosis. Because the scarring is in our lungs it's called pulmonary fibrosis. Hearing one doctor refer to it one way and a different doctor referring to it another is confusing. You may hear the same thing here also. There are over 200 types of interstitial lung disease and pretty much all of them cause pulmonary fibrosis to one degree or another. If someone asks me what kind of lung disease I have I tell them pulmonary fibrosis even though the more technical answer is non-specific interstitial pneumonitis. It just seems simpler to explain. "I have pulmonary fibrosis and my lungs are scarred". Again Cathy, welcome and I'm glad you're here though I am very sorry that you have reason to be. Beth in North Carolina Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Wednesday, November 26, 2008 10:49:22 PMSubject: confused and new to group is interstitial lung isease the same as pf. One dr calls it one thing and another calls pf. I have had it for almost 4 yrs and have no cough so to speak but recently breathing is worse and get sortness of breath just talking. Which is weird since 3 months ago in pulmonary rehab i was able to exercise without O2 now need it constantly and was told to boost to 3ltr when short of breath. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2008 Report Share Posted November 27, 2008 Cathy ... I'll just piggy-back Ze again here. Welcome to our group. I too was a couple of years before I needed O2. Now I have it always at night and with exertion. Let us know a little more about you...how you were dx (diagnosed) and so on. An oximeter is a good thing to have as Ze says. You can purchase one at www.portablenebs.com it is FDA approved and many of us here have one, including me. Works fine. Monitors o2 in the blood and heart rate. BTW it's the yellow one... Hope you're having a good turkey day! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: confused and new to group Hello Cathy and welcome to our group. As far as I'm aware PF is an interstitial lung disease, but that 'interstitial lung disease' is a blanket term covering other diseases as well. I went without O2 for a long time, but now need it continuously. I'm on 1L at rest and anything up to 6L on exhersion now. Do you have an oxymeter? They're invaluable for finding out your oxygen needs. Love Ze xx (39) dermatomyositis, PF etc for years, pulmonary hypertension 2008. >> is interstitial lung isease the same as pf. One dr calls it one thing > and another calls pf. I have had it for almost 4 yrs and have no cough > so to speak but recently breathing is worse and get sortness of breath > just talking. Which is weird since 3 months ago in pulmonary rehab i > was able to exercise without O2 now need it constantly and was told to > boost to 3ltr when short of breath.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2008 Report Share Posted November 27, 2008 You're welcome to a piggy back anytime Sher Love Ze xx> >> > is interstitial lung isease the same as pf. One dr calls it one thing > > and another calls pf. I have had it for almost 4 yrs and have no cough > > so to speak but recently breathing is worse and get sortness of breath > > just talking. Which is weird since 3 months ago in pulmonary rehab i > > was able to exercise without O2 now need it constantly and was told to > > boost to 3ltr when short of breath.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2008 Report Share Posted November 28, 2008 hi cathy sorry you need this group but glad you found us interstitial lung disease is like the umbrella within ILD there are lots of assorted diseases pulmonary fibrosis is one of them hardening of the lung tissue, scarring of the lung tissue, etc all it means is that we have trouble breathing and need supplemental oxygen that's a super simple explanation i just told jerry the story about the pregnant turkey with the cornish hen he told me about the tur-duck-in--he said that he saw it on tv too i think mary lou is the one who told us about it on airPink Joyce IPF 3/06 Pennsylvania Subject: confused and new to groupTo: Breathe-Support Date: Wednesday, November 26, 2008, 10:49 PM is interstitial lung isease the same as pf. One dr calls it one thing and another calls pf. I have had it for almost 4 yrs and have no cough so to speak but recently breathing is worse and get sortness of breath just talking. Which is weird since 3 months ago in pulmonary rehab i was able to exercise without O2 now need it constantly and was told to boost to 3ltr when short of breath. Quote Link to comment Share on other sites More sharing options...
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