Guest guest Posted November 12, 2009 Report Share Posted November 12, 2009 This question comes up once in awhile. No, using your O2 will not hurt you unless you are using in the high numbers. I'm on 2L and my pulmo and Dr. Raghu in Seattle at the UWMC both assure me the o2 will not hurt me. Beth can answer this question better than I... You don't say how many liters you are using... MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Getting scared this is probably a really stupid question, but should I be worried about how much O2 I am using? If I use too much will my lungs get "lazy" and not be able to function otherwise? When I was trying to get it together at the hosp. to come home, the nurses would say that I needed to "wean" myself from the O2. I was clinging to it and would freak out if they tried to turn it down. I was gasping! Now I am home and with the aid of my hycodan cough suppressant, I can sit and walk slowly with no O2, but I get very dizzy. I dont really know how to use this oxygen, I guess.> > > 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, some shortness > > 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, I was > > weak and sore and needed alittle more O2 than usual, but went home > > OK. Three days later I start blowing pink frothy foam from the drain > > 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 a chest > > tube to try to resolve the pneumothorax (collaped lung). Twice more > > during that time the lung collapsed again. It was still leaking air > > 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 seemed to > > 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 and feel > > as if I was suffocating. I have had this sensation a lot lately and > > 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 to this > > Oxygen hose and keep having to just sit or lay down and gasp like a > > fish on the dock. They discharged me any way, and the first day at > > home was nothing less than terrifying. I couldnt seem to get enough > > air. Now I am slowly improving , and believe that I will get back to > > 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 the way, > > 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 , First of all...welcome. Secondly...there are no stupid questions! The nurses are WRONG...If you have IPF..you need all the O2 you need! I know that's redundant...but...if 3-4 isn't helping turn the dial up!!! The nurses have not ever been SOB and are clueless about IPF! Call your pulmonologist, request a 24 hour oximetry study. It will keep track of your activity and O2 levels for 24 hours...then they can tell you how much you need. Ask him for a a script for an oximeter...there is one for #65. on-line. I can't remember the site. Someone else will probably let you know. With IPF...you really can't have too much O2...with in reason you can go up a level or two. Your lungs will not get "lazy"!!! What a ridiculous thing to say! You may need the O2 from now on...it's what keeps you able to live your life. You may also have to reevaluate your"normal" too. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower sneighbors59 wrote: this is probably a really stupid question, but should I be worried about how much O2 I am using? If I use too much will my lungs get "lazy" and not be able to function otherwise? When I was trying to get it together at the hosp. to come home, the nurses would say that I needed to "wean" myself from the O2. I was clinging to it and would freak out if they tried to turn it down. I was gasping! Now I am home and with the aid of my hycodan cough suppressant, I can sit and walk slowly with no O2, but I get very dizzy. I dont really know how to use this oxygen, I guess. > > > 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, some shortness > > 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, I was > > weak and sore and needed alittle more O2 than usual, but went home > > OK. Three days later I start blowing pink frothy foam from the drain > > 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 a chest > > tube to try to resolve the pneumothorax (collaped lung). Twice more > > during that time the lung collapsed again. It was still leaking air > > 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 seemed to > > 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 and feel > > as if I was suffocating. I have had this sensation a lot lately and > > 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 to this > > Oxygen hose and keep having to just sit or lay down and gasp like a > > fish on the dock. They discharged me any way, and the first day at > > home was nothing less than terrifying. I couldnt seem to get enough > > air. Now I am slowly improving , and believe that I will get back to > > 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 the way, > > 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 thanks Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Getting scaredTo: Breathe-Support Date: Thursday, November 12, 2009, 5:05 PM Joyce, It's true in general however when someone has Reynaud's or some other circulation problem in their extremities they may not have pink finger or toe nails and yet their saturation may be ok. But in general, if you have pink nails your sats are fine, if they are blue you may need to turn up the oxygen. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 12, 2009 4:30:24 PMSubject: Re: Re: Getting scared thanks Dyanne for the tip about the fingernails i wonder if that is always true because when i am cold, my fingers turn blue even with the o2, put them under warm water, and they turn pink eagerly waiting for a response from Beth Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: DyaneB <dyane.billings@ ball-mcgraw. com>Subject: Re: Getting scaredTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 12, 2009, 2:40 PM ,No no no! It is so obvious you need more when you move I want to come turn it up for you. My o2 provider just freaks when I tell her I am on 8 lpm on exertion, they worry about getting out the co2,but co2 is not our problem O2 IS and that is what I need even though I can turn it down to 2-3lpm when I am sitting still. Turn it up until you don't feel the 'feeling'. When your lungs heal you may be able to turn it down but right now your lungs are still hurting. I like those nurses to wean themselves from o2, maybe stick a bag over their heads. (and no I know they mean well Beth but come on if he was terrified why would they tell him that?) Dyane Phoenix ipf 02ps Look at your fingernails. If they have any medium to dark purple or blue tinge when you are walking you need more oxygen.> > > > > 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, some shortness > > > 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, I was > > > weak and sore and needed alittle more O2 than usual, but went home > > > OK. Three days later I start blowing pink frothy foam from the drain > > > 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 a chest > > > tube to try to resolve the pneumothorax (collaped lung). Twice more > > > during that time the lung collapsed again. It was still leaking air > > > 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 seemed to > > > 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 and feel > > > as if I was suffocating. I have had this sensation a lot lately and > > > 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 to this > > > Oxygen hose and keep having to just sit or lay down and gasp like a > > > fish on the dock. They discharged me any way, and the first day at > > > home was nothing less than terrifying. I couldnt seem to get enough > > > air. Now I am slowly improving , and believe that I will get back to > > > 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 the way, > > > 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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