Guest guest Posted November 12, 2009 Report Share Posted November 12, 2009 Is there somewhere I can see what all the various acronyms mean? I know mine (IPF) and that's about it. They are used here so often and I quite frankly get VERY LOST. What is an ILD? Myrlene Brown La Verne, CA IPF 2009 Subject: Re: Getting scaredTo: Breathe-Support Date: Thursday, November 12, 2009, 12:33 PM That is a typical statement made by a nurse not familiar with PF. Youwill often hear nurses familiar with COPD warning greatly against toomuch oxygen and they are correct in some of those warnings but COPD isan obstructive disease and PF is restrictive. You should be on whateveramount of oxygen it takes to keep you above a certain saturation levelat all times. That level is generally considered to be 90%. You need anoximeter and need to monitor yourself. One cannot go simply by shortnessof breath. You are likely to need different amounts sleeping, sitting,in activity and exercising. This also immediately brings to questionhave you seen a pulmonologist at an ILD center expert in PF yet? If not,I'd highly recommend that.> >> > > Hello all, my name is and I have had IPF for 3+ years now.Up> > > to now, it has not been that bad, a LOT of coughing, someshortness> > > of breath. I agreed to get some home O2 tanks for exertion or> > > whatever, but was still very functional. Then I agreed to let the> > > doctor perform a biopsy. Big mistake. After the first surgury, Iwas> > > weak and sore and needed alittle more O2 than usual, but went home> > > OK. Three days later I start blowing pink frothy foam from thedrain> > > site in my chest. The lung was leaking air from the surgury and my> > > lung collapsed. I went back into the hosp. for 2 weeks with achest> > > tube to try to resolve the pneumothorax (collaped lung). Twicemore> > > during that time the lung collapsed again. It was still leakingair> > > from the biopsy surgury. Finally they released me saying that it> > > looked like the leak stopped.I was home for 3 days and could tell> > > that something was wrong. I had a sudden HUGE shortness of breath> > > incident. Oxygen wasnt helping, I thought that I was dying. Called> > > 911, rode the ambulance to the hosp. where the x-ray showed a 75%> > > collapse of my lung. The doctor said that I had to have a second> > > surgury to go back and seal the leak. After the second surgury, I> > > thought that I was going to die in the hosp. My lungs just seemedto> > > quit working at all. I was needing 3-4 lpm O2 just to lay still.If> > > I tried to stand up I would collapse with choking coughing andfeel> > > as if I was suffocating. I have had this sensation a lot latelyand> > > I hate it.Anyway, I laid up in the hosp. for another week and the> > > leak is indeed stopped, but now I cant breathe. I am a slave tothis> > > Oxygen hose and keep having to just sit or lay down and gasp likea> > > fish on the dock. They discharged me any way, and the first day at> > > home was nothing less than terrifying. I couldnt seem to getenough> > > air. Now I am slowly improving , and believe that I will get backto> > > my "normal" soon. The problem is that I feel like I have gotten a> > > glimpse of what this is going to be like down the road, and I am> > > afraid. How do you deal with that suffocating gasping sensation? I> > > take some heavy duty cough suppressant which helps. Oh, by theway,> > > I am being considered for a lung transplant.That is a whole> > > different set of fears. I know that I am rambling here, but any> > > words of wisdom would be greatly appreciated.> > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2009 Report Share Posted November 12, 2009 ild is interstitial lung disease -- the umbrella name for lots of disease including IPF someone usually posts a link to the website that has all of the alphabet soup Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: ACRONYMSTo: Breathe-Support Date: Thursday, November 12, 2009, 4:30 PM Is there somewhere I can see what all the various acronyms mean? I know mine (IPF) and that's about it. They are used here so often and I quite frankly get VERY LOST. What is an ILD? Myrlene Brown La Verne, CA IPF 2009 From: Bruce <brucemoreland@ gmail.com>Subject: Re: Getting scaredTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 12, 2009, 12:33 PM That is a typical statement made by a nurse not familiar with PF. Youwill often hear nurses familiar with COPD warning greatly against toomuch oxygen and they are correct in some of those warnings but COPD isan obstructive disease and PF is restrictive. You should be on whateveramount of oxygen it takes to keep you above a certain saturation levelat all times. That level is generally considered to be 90%. You need anoximeter and need to monitor yourself. One cannot go simply by shortnessof breath. You are likely to need different amounts sleeping, sitting,in activity and exercising. This also immediately brings to questionhave you seen a pulmonologist at an ILD center expert in PF yet? If not,I'd highly recommend that.> >> > > Hello all, my name is and I have had IPF for 3+ years now.Up> > > to now, it has not been that bad, a LOT of coughing, someshortness> > > of breath. I agreed to get some home O2 tanks for exertion or> > > whatever, but was still very functional. Then I agreed to let the> > > doctor perform a biopsy. Big mistake. After the first surgury, Iwas> > > weak and sore and needed alittle more O2 than usual, but went home> > > OK. Three days later I start blowing pink frothy foam from thedrain> > > site in my chest. The lung was leaking air from the surgury and my> > > lung collapsed. I went back into the hosp. for 2 weeks with achest> > > tube to try to resolve the pneumothorax (collaped lung). Twicemore> > > during that time the lung collapsed again. It was still leakingair> > > from the biopsy surgury. Finally they released me saying that it> > > looked like the leak stopped.I was home for 3 days and could tell> > > that something was wrong. I had a sudden HUGE shortness of breath> > > incident. Oxygen wasnt helping, I thought that I was dying. Called> > > 911, rode the ambulance to the hosp. where the x-ray showed a 75%> > > collapse of my lung. The doctor said that I had to have a second> > > surgury to go back and seal the leak. After the second surgury, I> > > thought that I was going to die in the hosp. My lungs just seemedto> > > quit working at all. I was needing 3-4 lpm O2 just to lay still.If> > > I tried to stand up I would collapse with choking coughing andfeel> > > as if I was suffocating. I have had this sensation a lot latelyand> > > I hate it.Anyway, I laid up in the hosp. for another week and the> > > leak is indeed stopped, but now I cant breathe. I am a slave tothis> > > Oxygen hose and keep having to just sit or lay down and gasp likea> > > fish on the dock. They discharged me any way, and the first day at> > > home was nothing less than terrifying. I couldnt seem to getenough> > > air. Now I am slowly improving , and believe that I will get backto> > > my "normal" soon. The problem is that I feel like I have gotten a> > > glimpse of what this is going to be like down the road, and I am> > > afraid. How do you deal with that suffocating gasping sensation? I> > > take some heavy duty cough suppressant which helps. Oh, by theway,> > > I am being considered for a lung transplant.That is a whole> > > different set of fears. I know that I am rambling here, but any> > > words of wisdom would be greatly appreciated.> > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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