Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 This is my first post and i just want to say hi. I had lap Gastric bypass rny on may 12 of this year. I weighed 367 and then the day of surgery i weighted 330 and now I weigh 275. It is so amazing. I have a problem with food not wanted to go down and then i have to bring it back up. Just looking for sugestions. Thanks a bunch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 arianne you probably already read that with this disease the o2 level or SATuration is in the 90s when we sit and drops as soon as we become active i use liquid O2 with a Helios Marathon portable there is a concentrator in the house for in home use i have metal canisters for back up, but even the smallest ones are heavy and hurt my back for travel, you can rent or purchase a Portable Oxygen Concentrator - POC look up Inogen, Sequel Eclispe, Respironics if you travel by plane, you need to find out which POCs are approved for that specific airline you cannont bring Oxygen on the plane with you if you travel by car, you have more choices i do know a lady with COPD who rented a sequel eclipse for a car trip and that worked out well for her also if you travel in the united states, your o2 supplier, if it is a franchise like Lincare, will arrange for o2 to be delivered to your hotel a few people have traveled out of the country with the POC talk to the Manager at your oxygen supplier about your travel needs i think you said that you bought an oximeter, if not, get one asap ask your doc about pulmonary rehab consider a consult at a teaching hospital with a dept that specializes in interstitial lung diseases welcome, sorry you need us, but glad you found us Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: My first postTo: Breathe-Support Date: Thursday, January 14, 2010, 6:26 PM Hello everyone. I signed on a week or so ago, have read most of the files and all of the messages since then.My name is Ann, I reside in Massachusetts and am 70 years old. I have had 2 hip replacements, one in August of 2006 and the other in January of 2007. Other than that I have only had gall bladder surgery and a radical mastoidectomy.In November of 2009 I was diagnosed with Idiopathic Pulmonary Fibrsis. I had never heard of this before my dx.I really thought I had COPD, but the pulmonary doc said no. It's when he told me that he has a patient who had had it for five years and is doing well, that I began to see the seriousness of it all. He also said there is no cure, but suggested that I try NAC as his long-term patient uses it and says it works well for her. Needless to say I got it and am on my first refill.I saw this pulmonary doc on November 7 and again on December 28. At my first visit he took me for a walk with an oxometer and I dropped to 75. In December I dropped to 82. I'm sorry but I don't know all of the medical terms as of yet, but sure I will learn. At my first visit he told me I need oxygen when walking. When the Oxygen Company visited my home, they brought the whole store with them. I panicked. They told me that the doctor had ordered oxygen 24/7 at level 2. The doctor also told me that I could get a small container that would fit on my belt. The company told me there was nothing like that. On my second doctor visit, I asked him about it and he said that he would find a company that would supply me with one. That company turned out to be the very same company that I first dealt with.This past Monday, a therapist from this company came to my home to test me for an oxygen system that would only provide oxygen as needed. She took me for several walks around my house and up and down the stairs, and I failed on every level. It was only as she was about to leave the house that she noticed that the doctor had written a script for liquid oxygen. I don't want, nor will I use it. My husband and I travel often and the liquid would not work, yet the other so-called portable tanks only supply 45 minutes of oxygen. The therapist also told me that the doctor wrote the script for level 2 oxygen at rest, and level 3 with strenuous activity. He mentioned nothing about this to me.My oxygen is at 96% at rest and the therapist said that although it dropped when walking and climbing stairs, I have an immediate recovery when I sit. Needless to say I have not been myself since November. The more I find out about this disease, the more depressed I become. I have to talk myself out of bed every morning and force myself to do simple chores around the house.I am glad I found this group as you all seem so positive, and I need that. I know I have rambled and perhaps don't make sense, but I just needed to finally introduce myself and hope some of you can help me through your experiences. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Hi Ann, We are always so sad to need to welcome newbies but you are most welcome here to this Air Family. I understand the fear and confusion about this disease.I also have IPF. I am 67 years old. I was diagnosed in June 2004 so I am 5 1/2 years now. I know the 02 is scary to begin with but it is just so doable.. I am on 6 to 8 Leaders sitting and 12 to 15 when I am walking around. (which isn't much now days.) I have two concentrators and use the E tanks. I am right now using them to go to church when I can. You will feelso much better using it. Has your Dr. ordered an overnight saturation with an oximeter that tapes on your finger. Usually we need to sleep with 02 because we breathevery shallow while sleeping. You should probably ask about it. Be sure to stay in touch and ask any questions you have. We do have a wealth of information here in this group. God Bless. Love & PrayersPeggy, IPF 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Hi Ann- please heed Bruces suggestion that you go to a center of excellence for pulmonary fibrosis. When I was first diagnosed, I was also told that I had IPF and that it had a life expectancy of 3-5 years...it stunned me. then they told me that I should go to a center of excellence and I heeded them and went to National Jewish Health. Well, the care there was the finest I had ever had! They did tests that I never knew existed and in the end they told me I did NOT have IPF! I about jumped up and kissed my doctor! I had pulmonary fibrosis but what was causing it was my parrots! I had to rehome my birds-a sad day- and I had to rid my house of anything with birds...down and things like that. Well, I have stopped scarring. and though the damage had been done I probably will live a long time! If I had accepted the diagnoses from my local pulmodude I would be dead today because he kept insisting my illness had nothing to do with my parrots! He would have killed me. Please listen to mary beth and bruce and all the others. Contact immediately your local center of excellence. Joyce Rudy, AZ birds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 I don't understand what 6-8 leaders is or what a concentrator and E tank is. Would you please explain? My doctor hasn't ordered an overnight saturation yet, nor has he mentioned it. I ordered an oximeter yesterday through Amazon that should arrive within a few days. When I last saw my Primary doctor in Dec., he said that my lungs are clear. The same was said by the pulmonary doctor when I saw him a week or so later. Is that good news? How long will a portable (carry type) tank last if I should want to use it while on vacation? Thank you for the welcome.----- "Peggy " wrote: > > > > Hi Ann, We are always so sad to need to welcome newbies but you are most welcome here to this Air Family. I understand the fear and confusion about this disease.I also have IPF. I am 67 years old. I was diagnosed in June 2004 so I am 5 1/2 years now. I know the 02 is scary to begin with but it is just so doable.. I am on 6 to 8 Leaders sitting and 12 to 15 when I am walking around. (which isn't much now days.) I have two concentrators and use the E tanks. I am right now using them to go to church when I can. You will feelso much better using it. Has your Dr. ordered an overnight saturation with an oximeter that tapes on your finger. Usually we need to sleep with 02 because we breathevery shallow while sleeping. You should probably ask about it. > Be sure to stay in touch and ask any questions you have. We do have a wealth of information here in this group. God Bless.> > Love & PrayersPeggy, IPF 2004> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Arianne, Welcome, my name is Bob I'm 70 and I was diagnosed with IPF in Jan 09. I have a concentrator at home and use liquid when I go out. But, my wife and I recently took a trip to Europe and took a 14 day cruise. My CO2 company gave me a portable concentrator with 5 rechargeable batteries to use for the trip. Like you, I to was devastated when I was diagnosed and had to go on O2, then some one on this site told me "Look at O2 as an enabler instead of a disabler" because it will allow you to do all kinds of things you otherwise wouldn't be able to do. I am quite new compared to others in the group. They are wonderful, and I have learned more here than anywhere else. Bob, 70, IPF 1/09, 5 Bypasses 7/01 From: arianne377 <Arianne377 (AT) comcast (DOT) net>Subject: My first postTo: Breathe-Support@ yahoogroups. comDate: Thursday, January 14, 2010, 6:26 PM Hello everyone. I signed on a week or so ago, have read most of the files and all of the messages since then.My name is Ann, I reside in Massachusetts and am 70 years old. I have had 2 hip replacements, one in August of 2006 and the other in January of 2007. Other than that I have only had gall bladder surgery and a radical mastoidectomy.In November of 2009 I was diagnosed with Idiopathic Pulmonary Fibrsis. I had never heard of this before my dx.I really thought I had COPD, but the pulmonary doc said no. It's when he told me that he has a patient who had had it for five years and is doing well, that I began to see the seriousness of it all. He also said there is no cure, but suggested that I try NAC as his long-term patient uses it and says it works well for her. Needless to say I got it and am on my first refill.I saw this pulmonary doc on November 7 and again on December 28. At my first visit he took me for a walk with an oxometer and I dropped to 75. In December I dropped to 82. I'm sorry but I don't know all of the medical terms as of yet, but sure I will learn. At my first visit he told me I need oxygen when walking. When the Oxygen Company visited my home, they brought the whole store with them. I panicked. They told me that the doctor had ordered oxygen 24/7 at level 2. The doctor also told me that I could get a small container that would fit on my belt. The company told me there was nothing like that. On my second doctor visit, I asked him about it and he said that he would find a company that would supply me with one. That company turned out to be the very same company that I first dealt with.This past Monday, a therapist from this company came to my home to test me for an oxygen system that would only provide oxygen as needed. She took me for several walks around my house and up and down the stairs, and I failed on every level. It was only as she was about to leave the house that she noticed that the doctor had written a script for liquid oxygen. I don't want, nor will I use it. My husband and I travel often and the liquid would not work, yet the other so-called portable tanks only supply 45 minutes of oxygen. The therapist also told me that the doctor wrote the script for level 2 oxygen at rest, and level 3 with strenuous activity. He mentioned nothing about this to me.My oxygen is at 96% at rest and the therapist said that although it dropped when walking and climbing stairs, I have an immediate recovery when I sit. Needless to say I have not been myself since November. The more I find out about this disease, the more depressed I become. I have to talk myself out of bed every morning and force myself to do simple chores around the house.I am glad I found this group as you all seem so positive, and I need that. I know I have rambled and perhaps don't make sense, but I just needed to finally introduce myself and hope some of you can help me through your experiences. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Ann Plain and simply you desperately need to get to a doctor who deals with Interstitial Lung Diseases all the time. You need one who sees hundreds of PF patients, not a few. The best place is a teaching hospital that has an ILD center. I don't know what part of Mass you're in but Yale has one. I also know patients who go to Brigham and Womens and like it. In New York, Columbia and Cornell are excellent. Now what many do is go to an ILD center and then continue to use another pulmonologist for day to day issues. How were you diagnosed? On the basis of CT's? PFT's? You need to get your own oximeter to so you can monitor under different conditions. With COPD the variations in need aren't normally great but with PF they vary greatly between rest and activity. If you're maintaining at 96% at rest you're typical of earlier stages and may not even need oxygen when at rest. Have you had an overnight oximeter? You're very likely to need oxygen for sleep. As to activity, different activity may require different amounts. I was a bit shocked they let you drop to 75% on a 6 minute walk. They should have stopped it and/or gotten you oxygen. As to the therapist and your immediate recovery when you sit, it's still not good to drop to those levels. While oxygen will help you with less shortness of breath and make you feel better, I'm not sure anyone has explained the more critical reason for it. That is to protect your organs, especially your right side of your heart. Dropping below 90% or so does risk damage and Pulmonary Hypertension developing. As to types of oxygen equipment, I would recommend an appointment with the manager of the office of the supplier you're using. Talk to him about your needs and work out a solution together in a face to face meeting. They are also use to COPD patients and many who don't seek mobility. Solicit his help. If that fails then it becomes time to search for different suppliers. There are many equipment oxygens and ultimately pretty much anything is possible with oxygen. I'm a bit surprised at your definitive statement that liquid will not work for travel as I do quite a bit of traveling. Now, that doesn't mean its right for you. But, on all oxygen there are tanks to provide you varying lengths of time. On gaseous oxygen they would use conservers to do so. I know it doesn't seem like it but life can be good with PF. Feel free to ask any and all questions. > > Hello everyone. I signed on a week or so ago, have read most of the files and all of the messages since then. > My name is Ann, I reside in Massachusetts and am 70 years old. I have had 2 hip replacements, one in August of 2006 and the other in January of 2007. Other than that I have only had gall bladder surgery and a radical mastoidectomy. > In November of 2009 I was diagnosed with Idiopathic Pulmonary Fibrsis. I had never heard of this before my dx. > I really thought I had COPD, but the pulmonary doc said no. It's when he told me that he has a patient who had had it for five years and is doing well, that I began to see the seriousness of it all. He also said there is no cure, but suggested that I try NAC as his long-term patient uses it and says it works well for her. Needless to say I got it and am on my first refill. > I saw this pulmonary doc on November 7 and again on December 28. At my first visit he took me for a walk with an oxometer and I dropped to 75. In December I dropped to 82. I'm sorry but I don't know all of the medical terms as of yet, but sure I will learn. At my first visit he told me I need oxygen when walking. When the Oxygen Company visited my home, they brought the whole store with them. I panicked. They told me that the doctor had ordered oxygen 24/7 at level 2. The doctor also told me that I could get a small container that would fit on my belt. The company told me there was nothing like that. On my second doctor visit, I asked him about it and he said that he would find a company that would supply me with one. That company turned out to be the very same company that I first dealt with. > This past Monday, a therapist from this company came to my home to test me for an oxygen system that would only provide oxygen as needed. She took me for several walks around my house and up and down the stairs, and I failed on every level. It was only as she was about to leave the house that she noticed that the doctor had written a script for liquid oxygen. I don't want, nor will I use it. > My husband and I travel often and the liquid would not work, yet the other so-called portable tanks only supply 45 minutes of oxygen. The therapist also told me that the doctor wrote the script for level 2 oxygen at rest, and level 3 with strenuous activity. He mentioned nothing about this to me. > My oxygen is at 96% at rest and the therapist said that although it dropped when walking and climbing stairs, I have an immediate recovery when I sit. > Needless to say I have not been myself since November. The more I find out about this disease, the more depressed I become. I have to talk myself out of bed every morning and force myself to do simple chores around the house. > I am glad I found this group as you all seem so positive, and I need that. I know I have rambled and perhaps don't make sense, but I just needed to finally introduce myself and hope some of you can help me through your experiences. Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Ditto to what Bruce was telling you. And you are going to be ok just take each day as it comes and get out of bed, I remember when I was diagnosed they called me on the phone and told me, and i went to the internet and looked it up. Yep scared the sHit right out of me and still does But with the help of this group and I trully mean that, there are no other people that I would rather vent to because we all are dealing with the same crappy disease, and everyone here knows how each other feels. Keep on venting. As for the oxygen thing I have a Sequel and I really like. It My batteries last two and half hours on a constant 2. They gave me 2 batteries. Then the ac adapter, and a dc adapter that I can take with me in the car. Will this work for me later on I don't know but I like it for now.You will be ok Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009To: Breathe-Support Sent: Thu, January 14, 2010 8:52:40 PMSubject: Re: My first post Ann Plain and simply you desperately need to get to a doctor who deals with Interstitial Lung Diseases all the time. You need one who sees hundreds of PF patients, not a few. The best place is a teaching hospital that has an ILD center. I don't know what part of Mass you're in but Yale has one. I also know patients who go to Brigham and Womens and like it. In New York, Columbia and Cornell are excellent. Now what many do is go to an ILD center and then continue to use another pulmonologist for day to day issues. How were you diagnosed? On the basis of CT's? PFT's? You need to get your own oximeter to so you can monitor under different conditions. With COPD the variations in need aren't normally great but with PF they vary greatly between rest and activity. If you're maintaining at 96% at rest you're typical of earlier stages and may not even need oxygen when at rest. Have you had an overnight oximeter? You're very likely to need oxygen for sleep. As to activity, different activity may require different amounts. I was a bit shocked they let you drop to 75% on a 6 minute walk. They should have stopped it and/or gotten you oxygen. As to the therapist and your immediate recovery when you sit, it's still not good to drop to those levels. While oxygen will help you with less shortness of breath and make you feel better, I'm not sure anyone has explained the more critical reason for it. That is to protect your organs, especially your right side of your heart. Dropping below 90% or so does risk damage and Pulmonary Hypertension developing. As to types of oxygen equipment, I would recommend an appointment with the manager of the office of the supplier you're using. Talk to him about your needs and work out a solution together in a face to face meeting. They are also use to COPD patients and many who don't seek mobility. Solicit his help. If that fails then it becomes time to search for different suppliers. There are many equipment oxygens and ultimately pretty much anything is possible with oxygen. I'm a bit surprised at your definitive statement that liquid will not work for travel as I do quite a bit of traveling. Now, that doesn't mean its right for you. But, on all oxygen there are tanks to provide you varying lengths of time. On gaseous oxygen they would use conservers to do so. I know it doesn't seem like it but life can be good with PF. Feel free to ask any and all questions. > > Hello everyone. I signed on a week or so ago, have read most of the files and all of the messages since then. > My name is Ann, I reside in Massachusetts and am 70 years old. I have had 2 hip replacements, one in August of 2006 and the other in January of 2007. Other than that I have only had gall bladder surgery and a radical mastoidectomy. > In November of 2009 I was diagnosed with Idiopathic Pulmonary Fibrsis. I had never heard of this before my dx. > I really thought I had COPD, but the pulmonary doc said no. It's when he told me that he has a patient who had had it for five years and is doing well, that I began to see the seriousness of it all. He also said there is no cure, but suggested that I try NAC as his long-term patient uses it and says it works well for her. Needless to say I got it and am on my first refill. > I saw this pulmonary doc on November 7 and again on December 28. At my first visit he took me for a walk with an oxometer and I dropped to 75. In December I dropped to 82. I'm sorry but I don't know all of the medical terms as of yet, but sure I will learn. At my first visit he told me I need oxygen when walking. When the Oxygen Company visited my home, they brought the whole store with them. I panicked. They told me that the doctor had ordered oxygen 24/7 at level 2. The doctor also told me that I could get a small container that would fit on my belt. The company told me there was nothing like that. On my second doctor visit, I asked him about it and he said that he would find a company that would supply me with one. That company turned out to be the very same company that I first dealt with. > This past Monday, a therapist from this company came to my home to test me for an oxygen system that would only provide oxygen as needed. She took me for several walks around my house and up and down the stairs, and I failed on every level. It was only as she was about to leave the house that she noticed that the doctor had written a script for liquid oxygen. I don't want, nor will I use it. > My husband and I travel often and the liquid would not work, yet the other so-called portable tanks only supply 45 minutes of oxygen. The therapist also told me that the doctor wrote the script for level 2 oxygen at rest, and level 3 with strenuous activity. He mentioned nothing about this to me. > My oxygen is at 96% at rest and the therapist said that although it dropped when walking and climbing stairs, I have an immediate recovery when I sit. > Needless to say I have not been myself since November. The more I find out about this disease, the more depressed I become. I have to talk myself out of bed every morning and force myself to do simple chores around the house. > I am glad I found this group as you all seem so positive, and I need that. I know I have rambled and perhaps don't make sense, but I just needed to finally introduce myself and hope some of you can help me through your experiences. Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Beth, I use an E-tank with a conserver for travel and I have used it just for visiting before I got a conserver. With a conserver it lasts about 24 hours. Without the conserver, on constant, it lasted me on 2L about 6 hours. I have been traveling with the conserver on 3L. It must depend on how you breathe but with the conserver I get about what the book they gave me says.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho > > > > Hi Ann, We are always so sad to need to welcome newbies but you are most welcome here to this Air Family. I understand the fear and confusion about this disease. I also have IPF. I am 67 years old. I was diagnosed in June 2004 so I am 5 1/2 years now. I know the 02 is scary to begin with but it is just so doable.. I am on 6 to 8 Leaders sitting and 12 to 15 when I am walking around. (which isn't much now days.) I have two concentrators and use the E tanks. I am right now using them to go to church when I can. You will feel so much better using it. Has your Dr. ordered an overnight saturation with an oximeter that tapes on your finger. Usually we need to sleep with 02 because we breathe very shallow while sleeping. You should probably ask about it. > Be sure to stay in touch and ask any questions you have. We do have a wealth of information here in this group. God Bless.> > Love & Prayers Peggy, IPF 2004 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Ann, I just got back from a Center of Excellence. I didn't have birds but I had to have my roof replaced and there was mold in the roof and birds nesting in my center beam so like Joyce I was very happy with my new Dx.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia IdahoSubject: Re: Re: My first postTo: Breathe-Support Date: Thursday, January 14, 2010, 9:47 PM Hi Ann- please heed Bruces suggestion that you go to a center of excellence for pulmonary fibrosis. When I was first diagnosed, I was also told that I had IPF and that it had a life expectancy of 3-5 years...it stunned me. then they told me that I should go to a center of excellence and I heeded them and went to National Jewish Health. Well, the care there was the finest I had ever had! They did tests that I never knew existed and in the end they told me I did NOT have IPF! I about jumped up and kissed my doctor! I had pulmonary fibrosis but what was causing it was my parrots! I had to rehome my birds-a sad day- and I had to rid my house of anything with birds...down and things like that. Well, I have stopped scarring. and though the damage had been done I probably will live a long time! If I had accepted the diagnoses from my local pulmodude I would be dead today because he kept insisting my illness had nothing to do with my parrots! He would have killed me. Please listen to mary beth and bruce and all the others. Contact immediately your local center of excellence. Joyce Rudy, AZ birds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 Bruce, I don't know you personally ( obviously) but you are always saying that life is good with PF. I just want to say that you are good. That's all.!!!To: Breathe-Support Sent: Thu, January 14, 2010 9:52:40 PMSubject: Re: My first post Ann Plain and simply you desperately need to get to a doctor who deals with Interstitial Lung Diseases all the time. You need one who sees hundreds of PF patients, not a few. The best place is a teaching hospital that has an ILD center. I don't know what part of Mass you're in but Yale has one. I also know patients who go to Brigham and Womens and like it. In New York, Columbia and Cornell are excellent. Now what many do is go to an ILD center and then continue to use another pulmonologist for day to day issues. How were you diagnosed? On the basis of CT's? PFT's? You need to get your own oximeter to so you can monitor under different conditions. With COPD the variations in need aren't normally great but with PF they vary greatly between rest and activity. If you're maintaining at 96% at rest you're typical of earlier stages and may not even need oxygen when at rest. Have you had an overnight oximeter? You're very likely to need oxygen for sleep. As to activity, different activity may require different amounts. I was a bit shocked they let you drop to 75% on a 6 minute walk. They should have stopped it and/or gotten you oxygen. As to the therapist and your immediate recovery when you sit, it's still not good to drop to those levels. While oxygen will help you with less shortness of breath and make you feel better, I'm not sure anyone has explained the more critical reason for it. That is to protect your organs, especially your right side of your heart. Dropping below 90% or so does risk damage and Pulmonary Hypertension developing. As to types of oxygen equipment, I would recommend an appointment with the manager of the office of the supplier you're using. Talk to him about your needs and work out a solution together in a face to face meeting. They are also use to COPD patients and many who don't seek mobility. Solicit his help. If that fails then it becomes time to search for different suppliers. There are many equipment oxygens and ultimately pretty much anything is possible with oxygen. I'm a bit surprised at your definitive statement that liquid will not work for travel as I do quite a bit of traveling. Now, that doesn't mean its right for you. But, on all oxygen there are tanks to provide you varying lengths of time. On gaseous oxygen they would use conservers to do so. I know it doesn't seem like it but life can be good with PF. Feel free to ask any and all questions. > > Hello everyone. I signed on a week or so ago, have read most of the files and all of the messages since then. > My name is Ann, I reside in Massachusetts and am 70 years old. I have had 2 hip replacements, one in August of 2006 and the other in January of 2007. Other than that I have only had gall bladder surgery and a radical mastoidectomy. > In November of 2009 I was diagnosed with Idiopathic Pulmonary Fibrsis. I had never heard of this before my dx. > I really thought I had COPD, but the pulmonary doc said no. It's when he told me that he has a patient who had had it for five years and is doing well, that I began to see the seriousness of it all. He also said there is no cure, but suggested that I try NAC as his long-term patient uses it and says it works well for her. Needless to say I got it and am on my first refill. > I saw this pulmonary doc on November 7 and again on December 28. At my first visit he took me for a walk with an oxometer and I dropped to 75. In December I dropped to 82. I'm sorry but I don't know all of the medical terms as of yet, but sure I will learn. At my first visit he told me I need oxygen when walking. When the Oxygen Company visited my home, they brought the whole store with them. I panicked. They told me that the doctor had ordered oxygen 24/7 at level 2. The doctor also told me that I could get a small container that would fit on my belt. The company told me there was nothing like that. On my second doctor visit, I asked him about it and he said that he would find a company that would supply me with one. That company turned out to be the very same company that I first dealt with. > This past Monday, a therapist from this company came to my home to test me for an oxygen system that would only provide oxygen as needed. She took me for several walks around my house and up and down the stairs, and I failed on every level. It was only as she was about to leave the house that she noticed that the doctor had written a script for liquid oxygen. I don't want, nor will I use it. > My husband and I travel often and the liquid would not work, yet the other so-called portable tanks only supply 45 minutes of oxygen. The therapist also told me that the doctor wrote the script for level 2 oxygen at rest, and level 3 with strenuous activity. He mentioned nothing about this to me. > My oxygen is at 96% at rest and the therapist said that although it dropped when walking and climbing stairs, I have an immediate recovery when I sit. > Needless to say I have not been myself since November. The more I find out about this disease, the more depressed I become. I have to talk myself out of bed every morning and force myself to do simple chores around the house. > I am glad I found this group as you all seem so positive, and I need that. I know I have rambled and perhaps don't make sense, but I just needed to finally introduce myself and hope some of you can help me through your experiences. Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 Beverley, You're absolutely right. It depends very much on how rapidly you are breathing. If you are fairly quiet an E tank set on 2 or 3 conserve will indeed last 24 hours. There have been car trips I've taken where I start out in the morning with a full E tank, drive for 7 or 8 hours with it set on conserve and find I've used less than a quarter of it by the end of the day. If one is more active and breathing faster it will of course use the oxygen in the tank much faster. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Fri, January 15, 2010 12:32:45 AMSubject: Re: My first post Beth, I use an E-tank with a conserver for travel and I have used it just for visiting before I got a conserver. With a conserver it lasts about 24 hours. Without the conserver, on constant, it lasted me on 2L about 6 hours. I have been traveling with the conserver on 3L. It must depend on how you breathe but with the conserver I get about what the book they gave me says.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho > > > > Hi Ann, We are always so sad to need to welcome newbies but you are most welcome here to this Air Family. I understand the fear and confusion about this disease. I also have IPF. I am 67 years old. I was diagnosed in June 2004 so I am 5 1/2 years now. I know the 02 is scary to begin with but it is just so doable.. I am on 6 to 8 Leaders sitting and 12 to 15 when I am walking around. (which isn't much now days.) I have two concentrators and use the E tanks. I am right now using them to go to church when I can. You will feel so much better using it. Has your Dr. ordered an overnight saturation with an oximeter that tapes on your finger. Usually we need to sleep with 02 because we breathe very shallow while sleeping. You should probably ask about it. > Be sure to stay in touch and ask any questions you have. We do have a wealth of information here in this group. God Bless.> > Love & Prayers Peggy, IPF 2004 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 Bettye, Yes they think my PF may have been caused from Macrobid.....a medication I have taken all my life for bladder infections. Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 Like i said before, it is much easier for me to use portable unit when I am around the house, cooking, cleaning etc.I have a very long cord that allows me to go pretty far. Because it only holds a certain amount of oxygen, I have to refill it. I think it last about 4 hours and that is plenty for my acitivies around the house. I am not at the constant coughing stage yet. barbara jean> > From: Bruce <brucemoreland@ gmail.com>> Subject: Re: My first post> To: Breathe-Support@ yahoogroups. com> Date: Saturday, January 16, 2010, 11:33 AM> > > > Arianne> > A CPAP is a piece of equipment used to provide air to persons suffering> from sleep apnea.> > Not that I mind not doing those items especially, but no, I could not do> housework, change beds, vacuum etc. One technique many use here is the> 15 minute rule where they limit themselves to 15 minutes at a time. For> me any lifting, pushing and pulling drops my saturations significantly> and is very difficult for me to do. Could I vacuum a spot or something?> Sure. But the house? No Way. On the bed, getting the fitted sheet on> would be something I can't do. It's just that pulling motion. Laundry is> probably the most difficult thing I do, especially moving the wash from> the washer to the dryer and then getting it out of the dryer. I turn my> oxygen up and do it very slowly. I will pause after each handful (and> take smaller handfuls than I would have) of clothing I move. So, its> lift from washer, put in dryer, pause and pursed lip breathing.> > Now, each of us is at a different point and what we can do varies> greatly. But, part of my current living arrangement was that we would be> able to have a weekly housekeeper. She comes once a week for 4 hours. I> actually found her through care.com and she's quite reasonable. If not> for the cats, once every other week would be fine as the two adults here> aren't too messy, but the monstous puffs of fur scampering around do> create a more frequent need.> > > > >> > >> > >> > >> >> >> > >> >> > Ariann Your situation is very much like mine. I am 71 had both hips> replaced and one shoulder. I now have a knee that is acting up. I became> very short of breathe about a year ago and after going through test they> diagnosed IPF in June. I had been on a c pap for two years and am now on> it with oxygen at night. My situation is a lot like yours. My level is> good when I am setting or doing light work but falls during exertion (> 70 and 80's) I have a unit that works well for me and might you too. The> machine is capable of filling my oxygen tanks (portable) which I use> when shopping, walking, and heavy cleaning. The machine is hooked up to> my c pap at night. I have two tanks, one I use at home and one I carry> in my car for shopping.> > > I just had a pulmonary function test and a cat scan but dont have> the results yet. I am anxious to see if they have changed since my test> in June. My sister has IPF and Copd and goes to the same Dr. He told her> that this condition IPF is an inherited disease which is good to know> for family. Barb> > barbara jean> >> > >> > >> > >> > >> > From: arianne377 Arianne377@. ..> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Thu, January 14, 2010 5:26:27 PM> > > Subject: My first post> > >> > >> > >> >> > Hello everyone. I signed on a week or so ago, have read most of the> files and all of the messages since then.> > > My name is Ann, I reside in Massachusetts and am 70 years old. I> have had 2 hip replacements, one in August of 2006 and the other in> January of 2007. Other than that I have only had gall bladder surgery> and a radical mastoidectomy.> > > In November of 2009 I was diagnosed with Idiopathic Pulmonary> Fibrsis. I had never heard of this before my dx.> > > I really thought I had COPD, but the pulmonary doc said no. It's> when he told me that he has a patient who had had it for five years and> is doing well, that I began to see the seriousness of it all. He also> said there is no cure, but suggested that I try NAC as his long-term> patient uses it and says it works well for her. Needless to say I got it> and am on my first refill.> > > I saw this pulmonary doc on November 7 and again on December 28. At> my first visit he took me for a walk with an oxometer and I dropped to> 75. In December I dropped to 82. I'm sorry but I don't know all of the> medical terms as of yet, but sure I will learn. At my first visit he> told me I need oxygen when walking. When the Oxygen Company visited my> home, they brought the whole store with them. I panicked. They told me> that the doctor had ordered oxygen 24/7 at level 2. The doctor also told> me that I could get a small container that would fit on my belt. The> company told me there was nothing like that. On my second doctor visit,> I asked him about it and he said that he would find a company that would> supply me with one. That company turned out to be the very same company> that I first dealt with.> > > This past Monday, a therapist from this company came to my home to> test me for an oxygen system that would only provide oxygen as needed.> She took me for several walks around my house and up and down the> stairs, and I failed on every level. It was only as she was about to> leave the house that she noticed that the doctor had written a script> for liquid oxygen. I don't want, nor will I use it.> > > My husband and I travel often and the liquid would not work, yet the> other so-called portable tanks only supply 45 minutes of oxygen. The> therapist also told me that the doctor wrote the script for level 2> oxygen at rest, and level 3 with strenuous activity. He mentioned> nothing about this to me.> > > My oxygen is at 96% at rest and the therapist said that although it> dropped when walking and climbing stairs, I have an immediate recovery> when I sit.> > > Needless to say I have not been myself since November. The more I> find out about this disease, the more depressed I become. I have to talk> myself out of bed every morning and force myself to do simple chores> around the house.> > > I am glad I found this group as you all seem so positive, and I need> that. I know I have rambled and perhaps don't make sense, but I just> needed to finally introduce myself and hope some of you can help me> through your experiences. Thanks> > >> > >> >> >> > >> > >> >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 I use a little Helios, and I bought a cheap kids backpack. Then I cut a hole in the backpack to thread the hose through and reinforced the hole with (what else?) duct tape. I use the Helios/backpack combo when I want to walk the dogs or garden or whatever requires my hands to be free. B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Counting my blessings: #28 - Good doctors Consider what a great forest is set ablaze by a small spark. ( 3:5) To: Breathe-Support Sent: Sat, January 16, 2010 3:26:56 PMSubject: Re: Re: My first post Like i said before, it is much easier for me to use portable unit when I am around the house, cooking, cleaning etc.I have a very long cord that allows me to go pretty far. Because it only holds a certain amount of oxygen, I have to refill it. I think it last about 4 hours and that is plenty for my acitivies around the house. I am not at the constant coughing stage yet. barbara jean> > From: Bruce <brucemoreland@ gmail.com>> Subject: Re: My first post> To: Breathe-Support@ yahoogroups. com> Date: Saturday, January 16, 2010, 11:33 AM> > > > Arianne> > A CPAP is a piece of equipment used to provide air to persons suffering> from sleep apnea.> > Not that I mind not doing those items especially, but no, I could not do> housework, change beds, vacuum etc. One technique many use here is the> 15 minute rule where they limit themselves to 15 minutes at a time. For> me any lifting, pushing and pulling drops my saturations significantly> and is very difficult for me to do. Could I vacuum a spot or something?> Sure. But the house? No Way. On the bed, getting the fitted sheet on> would be something I can't do. It's just that pulling motion. Laundry is> probably the most difficult thing I do, especially moving the wash from> the washer to the dryer and then getting it out of the dryer. I turn my> oxygen up and do it very slowly. I will pause after each handful (and> take smaller handfuls than I would have) of clothing I move. So, its> lift from washer, put in dryer, pause and pursed lip breathing.> > Now, each of us is at a different point and what we can do varies> greatly. But, part of my current living arrangement was that we would be> able to have a weekly housekeeper. She comes once a week for 4 hours. I> actually found her through care.com and she's quite reasonable. If not> for the cats, once every other week would be fine as the two adults here> aren't too messy, but the monstous puffs of fur scampering around do> create a more frequent need.> > > > >> > >> > >> > >> >> >> > >> >> > Ariann Your situation is very much like mine. I am 71 had both hips> replaced and one shoulder. I now have a knee that is acting up. I became> very short of breathe about a year ago and after going through test they> diagnosed IPF in June. I had been on a c pap for two years and am now on> it with oxygen at night. My situation is a lot like yours. My level is> good when I am setting or doing light work but falls during exertion (> 70 and 80's) I have a unit that works well for me and might you too. The> machine is capable of filling my oxygen tanks (portable) which I use> when shopping, walking, and heavy cleaning. The machine is hooked up to> my c pap at night. I have two tanks, one I use at home and one I carry> in my car for shopping.> > > I just had a pulmonary function test and a cat scan but dont have> the results yet. I am anxious to see if they have changed since my test> in June. My sister has IPF and Copd and goes to the same Dr. He told her> that this condition IPF is an inherited disease which is good to know> for family. Barb> > barbara jean> >> > >> > >> > >> > >> > From: arianne377 Arianne377@. ..> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Thu, January 14, 2010 5:26:27 PM> > > Subject: My first post> > >> > >> > >> >> > Hello everyone. I signed on a week or so ago, have read most of the> files and all of the messages since then.> > > My name is Ann, I reside in Massachusetts and am 70 years old. I> have had 2 hip replacements, one in August of 2006 and the other in> January of 2007. Other than that I have only had gall bladder surgery> and a radical mastoidectomy.> > > In November of 2009 I was diagnosed with Idiopathic Pulmonary> Fibrsis. I had never heard of this before my dx.> > > I really thought I had COPD, but the pulmonary doc said no. It's> when he told me that he has a patient who had had it for five years and> is doing well, that I began to see the seriousness of it all. He also> said there is no cure, but suggested that I try NAC as his long-term> patient uses it and says it works well for her. Needless to say I got it> and am on my first refill.> > > I saw this pulmonary doc on November 7 and again on December 28. At> my first visit he took me for a walk with an oxometer and I dropped to> 75. In December I dropped to 82. I'm sorry but I don't know all of the> medical terms as of yet, but sure I will learn. At my first visit he> told me I need oxygen when walking. When the Oxygen Company visited my> home, they brought the whole store with them. I panicked. They told me> that the doctor had ordered oxygen 24/7 at level 2. The doctor also told> me that I could get a small container that would fit on my belt. The> company told me there was nothing like that. On my second doctor visit,> I asked him about it and he said that he would find a company that would> supply me with one. That company turned out to be the very same company> that I first dealt with.> > > This past Monday, a therapist from this company came to my home to> test me for an oxygen system that would only provide oxygen as needed.> She took me for several walks around my house and up and down the> stairs, and I failed on every level. It was only as she was about to> leave the house that she noticed that the doctor had written a script> for liquid oxygen. I don't want, nor will I use it.> > > My husband and I travel often and the liquid would not work, yet the> other so-called portable tanks only supply 45 minutes of oxygen. The> therapist also told me that the doctor wrote the script for level 2> oxygen at rest, and level 3 with strenuous activity. He mentioned> nothing about this to me.> > > My oxygen is at 96% at rest and the therapist said that although it> dropped when walking and climbing stairs, I have an immediate recovery> when I sit.> > > Needless to say I have not been myself since November. The more I> find out about this disease, the more depressed I become. I have to talk> myself out of bed every morning and force myself to do simple chores> around the house.> > > I am glad I found this group as you all seem so positive, and I need> that. I know I have rambled and perhaps don't make sense, but I just> needed to finally introduce myself and hope some of you can help me> through your experiences. Thanks> > >> > >> >> >> > >> > >> >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 I,too, use everything I can to help make things easier. No on my knees task or reaching high because of shoulder problems barbara jean > > > > Pink/Arianne> > Also consider new ways of doing things and trying some energy saving> methods. For instance, I got a Shark steam mop and it does a great job.> Far easier than traditional mopping and hand scubbing and I can use it> when we make a mess and some spot mopping is necessary. If I was the one> having to vacuum, I'd have to change vacuums. I have a great vacuum for> allergic people, but its heavy. Replace your current laundry baskets> with light mesh ones or even something on wheels. Just saying there are> sometimes less physical ways than the way we've always done things.> > > > > >> > > >> > > >> > > >> > >> > >> > > >> > >> > > Ariann Your situation is very much like mine. I am 71 had both hips> > replaced and one shoulder. I now have a knee that is acting up. I> became> > very short of breathe about a year ago and after going through test> they> > diagnosed IPF in June. I had been on a c pap for two years and am now> on> > it with oxygen at night. My situation is a lot like yours. My level is> > good when I am setting or doing light work but falls during exertion (> > 70 and 80's) I have a unit that works well for me and might you too.> The> > machine is capable of filling my oxygen tanks (portable) which I use> > when shopping, walking, and heavy cleaning. The machine is hooked up> to> > my c pap at night. I have two tanks, one I use at home and one I carry> > in my car for shopping.> > > > I just had a pulmonary function test and a cat scan but dont have> > the results yet. I am anxious to see if they have changed since my> test> > in June. My sister has IPF and Copd and goes to the same Dr. He told> her> > that this condition IPF is an inherited disease which is good to know> > for family. Barb> > > barbara jean> > >> > > >> > > >> > > >> > > >> > > From: arianne377 Arianne377@ ..> > > > To: Breathe-Support@ yahoogroups. com> > > > Sent: Thu, January 14, 2010 5:26:27 PM> > > > Subject: My first post> > > >> > > >> > > >> > >> > > Hello everyone. I signed on a week or so ago, have read most of the> > files and all of the messages since then.> > > > My name is Ann, I reside in Massachusetts and am 70 years old. I> > have had 2 hip replacements, one in August of 2006 and the other in> > January of 2007. Other than that I have only had gall bladder surgery> > and a radical mastoidectomy.> > > > In November of 2009 I was diagnosed with Idiopathic Pulmonary> > Fibrsis. I had never heard of this before my dx.> > > > I really thought I had COPD, but the pulmonary doc said no. It's> > when he told me that he has a patient who had had it for five years> and> > is doing well, that I began to see the seriousness of it all. He also> > said there is no cure, but suggested that I try NAC as his long-term> > patient uses it and says it works well for her. Needless to say I got> it> > and am on my first refill.> > > > I saw this pulmonary doc on November 7 and again on December 28.> At> > my first visit he took me for a walk with an oxometer and I dropped to> > 75. In December I dropped to 82. I'm sorry but I don't know all of the> > medical terms as of yet, but sure I will learn. At my first visit he> > told me I need oxygen when walking. When the Oxygen Company visited my> > home, they brought the whole store with them. I panicked. They told me> > that the doctor had ordered oxygen 24/7 at level 2. The doctor also> told> > me that I could get a small container that would fit on my belt. The> > company told me there was nothing like that. On my second doctor> visit,> > I asked him about it and he said that he would find a company that> would> > supply me with one. That company turned out to be the very same> company> > that I first dealt with.> > > > This past Monday, a therapist from this company came to my home to> > test me for an oxygen system that would only provide oxygen as needed.> > She took me for several walks around my house and up and down the> > stairs, and I failed on every level. It was only as she was about to> > leave the house that she noticed that the doctor had written a script> > for liquid oxygen. I don't want, nor will I use it.> > > > My husband and I travel often and the liquid would not work, yet> the> > other so-called portable tanks only supply 45 minutes of oxygen. The> > therapist also told me that the doctor wrote the script for level 2> > oxygen at rest, and level 3 with strenuous activity. He mentioned> > nothing about this to me.> > > > My oxygen is at 96% at rest and the therapist said that although> it> > dropped when walking and climbing stairs, I have an immediate recovery> > when I sit.> > > > Needless to say I have not been myself since November. The more I> > find out about this disease, the more depressed I become. I have to> talk> > myself out of bed every morning and force myself to do simple chores> > around the house.> > > > I am glad I found this group as you all seem so positive, and I> need> > that. I know I have rambled and perhaps don't make sense, but I just> > needed to finally introduce myself and hope some of you can help me> > through your experiences. Thanks> > > >> > > >> > >> > >> > > >> > > >> > >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 Arianne, One of the comments made at pulmonary rehab was"what can you do sitting down that you may have previously done standing up around the house?" Like...folding laundry, cutting foods for food prep, taking a shower ( get a shower chair) getting dressed ! You use more energy standing up..save it for good stuff...not cleaning! 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 Zionâ€Â Bob Marley Vinca Minor-periwinkle is my flower   Arianne wrote:  I have been using the swiffer mop since I had my hips done. No more hands & knees. I also have a very light weight vacuum but was very winded using it yesterday without air. I won't do that anymore. Thank goodness I have had practice in learning new ways of doing things. I was nearly useless for years before my hip replacements so constantly had to keep applying new techniques. ----- "Bruce" <brucemoreland (AT) gmail (DOT) com> wrote: >  > > > Pink/Arianne > > Also consider new ways of doing things and trying some energy saving > methods. For instance, I got a Shark steam mop and it does a great job. > Far easier than traditional mopping and hand scubbing and I can use it > when we make a mess and some spot mopping is necessary. If I was the one > having to vacuum, I'd have to change vacuums. I have a great vacuum for > allergic people, but its heavy. Replace your current laundry baskets > with light mesh ones or even something on wheels. Just saying there are > sometimes less physical ways than the way we've always done things. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Ariann Your situation is very much like mine. I am 71 had both hips > > replaced and one shoulder. I now have a knee that is acting up. I > became > > very short of breathe about a year ago and after going through test > they > > diagnosed IPF in June. I had been on a c pap for two years and am now > on > > it with oxygen at night. My situation is a lot like yours. My level is > > good when I am setting or doing light work but falls during exertion ( > > 70 and 80's) I have a unit that works well for me and might you too. > The > > machine is capable of filling my oxygen tanks (portable) which I use > > when shopping, walking, and heavy cleaning. The machine is hooked up > to > > my c pap at night. I have two tanks, one I use at home and one I carry > > in my car for shopping. > > > > I just had a pulmonary function test and a cat scan but dont have > > the results yet. I am anxious to see if they have changed since my > test > > in June. My sister has IPF and Copd and goes to the same Dr. He told > her > > that this condition IPF is an inherited disease which is good to know > > for family. Barb > > > barbara jean > > > > > > > > > > > > > > > > > > > > > > From: arianne377 Arianne377@ .. > > > > To: Breathe-Support@ yahoogroups. com > > > > Sent: Thu, January 14, 2010 5:26:27 PM > > > > Subject: My first post > > > > > > > > > > > > > > > > > > Hello everyone. I signed on a week or so ago, have read most of the > > files and all of the messages since then. > > > > My name is Ann, I reside in Massachusetts and am 70 years old. I > > have had 2 hip replacements, one in August of 2006 and the other in > > January of 2007. Other than that I have only had gall bladder surgery > > and a radical mastoidectomy. > > > > In November of 2009 I was diagnosed with Idiopathic Pulmonary > > Fibrsis. I had never heard of this before my dx. > > > > I really thought I had COPD, but the pulmonary doc said no. It's > > when he told me that he has a patient who had had it for five years > and > > is doing well, that I began to see the seriousness of it all. He also > > said there is no cure, but suggested that I try NAC as his long-term > > patient uses it and says it works well for her. Needless to say I got > it > > and am on my first refill. > > > > I saw this pulmonary doc on November 7 and again on December 28. > At > > my first visit he took me for a walk with an oxometer and I dropped to > > 75. In December I dropped to 82. I'm sorry but I don't know all of the > > medical terms as of yet, but sure I will learn. At my first visit he > > told me I need oxygen when walking. When the Oxygen Company visited my > > home, they brought the whole store with them. I panicked. They told me > > that the doctor had ordered oxygen 24/7 at level 2. The doctor also > told > > me that I could get a small container that would fit on my belt. The > > company told me there was nothing like that. On my second doctor > visit, > > I asked him about it and he said that he would find a company that > would > > supply me with one. That company turned out to be the very same > company > > that I first dealt with. > > > > This past Monday, a therapist from this company came to my home to > > test me for an oxygen system that would only provide oxygen as needed. > > She took me for several walks around my house and up and down the > > stairs, and I failed on every level. It was only as she was about to > > leave the house that she noticed that the doctor had written a script > > for liquid oxygen. I don't want, nor will I use it. > > > > My husband and I travel often and the liquid would not work, yet > the > > other so-called portable tanks only supply 45 minutes of oxygen. The > > therapist also told me that the doctor wrote the script for level 2 > > oxygen at rest, and level 3 with strenuous activity. He mentioned > > nothing about this to me. > > > > My oxygen is at 96% at rest and the therapist said that although > it > > dropped when walking and climbing stairs, I have an immediate recovery > > when I sit. > > > > Needless to say I have not been myself since November. The more I > > find out about this disease, the more depressed I become. I have to > talk > > myself out of bed every morning and force myself to do simple chores > > around the house. > > > > I am glad I found this group as you all seem so positive, and I > need > > that. I know I have rambled and perhaps don't make sense, but I just > > needed to finally introduce myself and hope some of you can help me > > through your experiences. Thanks > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 bruce what is a shark steam mop Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: My first postTo: Breathe-Support Date: Saturday, January 16, 2010, 12:50 PM Pink/ArianneAlso consider new ways of doing things and trying some energy savingmethods. For instance, I got a Shark steam mop and it does a great job.Far easier than traditional mopping and hand scubbing and I can use itwhen we make a mess and some spot mopping is necessary. If I was the onehaving to vacuum, I'd have to change vacuums. I have a great vacuum forallergic people, but its heavy. Replace your current laundry basketswith light mesh ones or even something on wheels. Just saying there aresometimes less physical ways than the way we've always done things.> > >> > >> > >> > >> >> >> > >> >> > Ariann Your situation is very much like mine. I am 71 had both hips> replaced and one shoulder. I now have a knee that is acting up. Ibecame> very short of breathe about a year ago and after going through testthey> diagnosed IPF in June. I had been on a c pap for two years and am nowon> it with oxygen at night. My situation is a lot like yours. My level is> good when I am setting or doing light work but falls during exertion (> 70 and 80's) I have a unit that works well for me and might you too.The> machine is capable of filling my oxygen tanks (portable) which I use> when shopping, walking, and heavy cleaning. The machine is hooked upto> my c pap at night. I have two tanks, one I use at home and one I carry> in my car for shopping.> > > I just had a pulmonary function test and a cat scan but dont have> the results yet. I am anxious to see if they have changed since mytest> in June. My sister has IPF and Copd and goes to the same Dr. He toldher> that this condition IPF is an inherited disease which is good to know> for family. Barb> > barbara jean> >> > >> > >> > >> > >> > From: arianne377 Arianne377@ ..> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Thu, January 14, 2010 5:26:27 PM> > > Subject: My first post> > >> > >> > >> >> > Hello everyone. I signed on a week or so ago, have read most of the> files and all of the messages since then.> > > My name is Ann, I reside in Massachusetts and am 70 years old. I> have had 2 hip replacements, one in August of 2006 and the other in> January of 2007. Other than that I have only had gall bladder surgery> and a radical mastoidectomy.> > > In November of 2009 I was diagnosed with Idiopathic Pulmonary> Fibrsis. I had never heard of this before my dx.> > > I really thought I had COPD, but the pulmonary doc said no. It's> when he told me that he has a patient who had had it for five yearsand> is doing well, that I began to see the seriousness of it all. He also> said there is no cure, but suggested that I try NAC as his long-term> patient uses it and says it works well for her. Needless to say I gotit> and am on my first refill.> > > I saw this pulmonary doc on November 7 and again on December 28.At> my first visit he took me for a walk with an oxometer and I dropped to> 75. In December I dropped to 82. I'm sorry but I don't know all of the> medical terms as of yet, but sure I will learn. At my first visit he> told me I need oxygen when walking. When the Oxygen Company visited my> home, they brought the whole store with them. I panicked. They told me> that the doctor had ordered oxygen 24/7 at level 2. The doctor alsotold> me that I could get a small container that would fit on my belt. The> company told me there was nothing like that. On my second doctorvisit,> I asked him about it and he said that he would find a company thatwould> supply me with one. That company turned out to be the very samecompany> that I first dealt with.> > > This past Monday, a therapist from this company came to my home to> test me for an oxygen system that would only provide oxygen as needed.> She took me for several walks around my house and up and down the> stairs, and I failed on every level. It was only as she was about to> leave the house that she noticed that the doctor had written a script> for liquid oxygen. I don't want, nor will I use it.> > > My husband and I travel often and the liquid would not work, yetthe> other so-called portable tanks only supply 45 minutes of oxygen. The> therapist also told me that the doctor wrote the script for level 2> oxygen at rest, and level 3 with strenuous activity. He mentioned> nothing about this to me.> > > My oxygen is at 96% at rest and the therapist said that althoughit> dropped when walking and climbing stairs, I have an immediate recovery> when I sit.> > > Needless to say I have not been myself since November. The more I> find out about this disease, the more depressed I become. I have totalk> myself out of bed every morning and force myself to do simple chores> around the house.> > > I am glad I found this group as you all seem so positive, and Ineed> that. I know I have rambled and perhaps don't make sense, but I just> needed to finally introduce myself and hope some of you can help me> through your experiences. Thanks> > >> > >> >> >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 the way my house is set up, the concentrator is centrally located so the 50 foot tube reaches upstairs too jerry put a bungie cord with a hook for me to put the cannula on i can walk upstairs ok, and pull the canulla from the top since i am on one level living i rarely go upstairs. Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: My first postTo: Breathe-Support Date: Saturday, January 16, 2010, 12:53 PM Thank you. I have a reacher from when I had my hip replacements, so that will work for me. Woody (my husband), took over the laundry before I had the replacements and still does it. I think I will take that job back as it is easier to do than other things. Once my meter arrives I will be able to see what my stats are. Then I can go from there. I stripped my bed this morning but Woody made it. He is very helpful even under normal circumstances. Bending doesn't make me cough so right now that isn't a problem for me. Also, when my meter arrives I will be able to assess what I can do oxygen-wise with purchasing something else.Woody put my big unit out in the family room this morning. That now gives me full access to the complete downstairs. He said that all he has to do is carry it upstairs and centrally situate it for it to give me full access to the upstairs. I have a 50 foot tube. So far, so good. ----- "Joyce T Rosenberg" <pinkrockybeach@ yahoo.com> wrote: > > > > arianne i need to use oxygen when doing housework bending makes me cough laundry -- to get the stuff out of the dryer, i sit on the floor and reach in, i also use a 12 inch ruler to pull stuff from the back of the dryer to the front of the dryer where i can reach it vacuum-- can be done with o2, but o2 tube and vacuum cord get tangled, so Jerry does vacuuming kitchen floor -- i use a stand up mop or i sit down on floor for hand wipe ups dust with a damp cloth -- usually windex or non aerasol spray to pick up dust -- limit the bending jerry helps me change the bed -- i can strip it easily, making it is the tough part as Bruce said, remember the 15 minute rule , rest after 15 minutes if bending makes you cough, limit the bending, find other ways to do stuff you might even have to change cleaning products to stuff that doesn't bother you depends on what your condition is at the time recently suggested to someone that she wear her portable while vacuuming -- eliminates the tangle of the tube and the cord> > Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org> > > > From: Bruce <brucemoreland@ gmail.com>> Subject: Re: My first post> To: Breathe-Support@ yahoogroups. com> Date: Saturday, January 16, 2010, 11:33 AM> > > > Arianne> > A CPAP is a piece of equipment used to provide air to persons suffering> from sleep apnea.> > Not that I mind not doing those items especially, but no, I could not do> housework, change beds, vacuum etc. One technique many use here is the> 15 minute rule where they limit themselves to 15 minutes at a time. For> me any lifting, pushing and pulling drops my saturations significantly> and is very difficult for me to do. Could I vacuum a spot or something?> Sure. But the house? No Way. On the bed, getting the fitted sheet on> would be something I can't do. It's just that pulling motion. Laundry is> probably the most difficult thing I do, especially moving the wash from> the washer to the dryer and then getting it out of the dryer. I turn my> oxygen up and do it very slowly. I will pause after each handful (and> take smaller handfuls than I would have) of clothing I move. So, its> lift from washer, put in dryer, pause and pursed lip breathing.> > Now, each of us is at a different point and what we can do varies> greatly. But, part of my current living arrangement was that we would be> able to have a weekly housekeeper. She comes once a week for 4 hours. I> actually found her through care.com and she's quite reasonable. If not> for the cats, once every other week would be fine as the two adults here> aren't too messy, but the monstous puffs of fur scampering around do> create a more frequent need.> > > > >> > >> > >> > >> >> >> > >> >> > Ariann Your situation is very much like mine. I am 71 had both hips> replaced and one shoulder. I now have a knee that is acting up. I became> very short of breathe about a year ago and after going through test they> diagnosed IPF in June. I had been on a c pap for two years and am now on> it with oxygen at night. My situation is a lot like yours. My level is> good when I am setting or doing light work but falls during exertion (> 70 and 80's) I have a unit that works well for me and might you too. The> machine is capable of filling my oxygen tanks (portable) which I use> when shopping, walking, and heavy cleaning. The machine is hooked up to> my c pap at night. I have two tanks, one I use at home and one I carry> in my car for shopping.> > > I just had a pulmonary function test and a cat scan but dont have> the results yet. I am anxious to see if they have changed since my test> in June. My sister has IPF and Copd and goes to the same Dr. He told her> that this condition IPF is an inherited disease which is good to know> for family. Barb> > barbara jean> >> > >> > >> > >> > >> > From: arianne377 Arianne377@. ..> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Thu, January 14, 2010 5:26:27 PM> > > Subject: My first post> > >> > >> > >> >> > Hello everyone. I signed on a week or so ago, have read most of the> files and all of the messages since then.> > > My name is Ann, I reside in Massachusetts and am 70 years old. I> have had 2 hip replacements, one in August of 2006 and the other in> January of 2007. Other than that I have only had gall bladder surgery> and a radical mastoidectomy.> > > In November of 2009 I was diagnosed with Idiopathic Pulmonary> Fibrsis. I had never heard of this before my dx.> > > I really thought I had COPD, but the pulmonary doc said no. It's> when he told me that he has a patient who had had it for five years and> is doing well, that I began to see the seriousness of it all. He also> said there is no cure, but suggested that I try NAC as his long-term> patient uses it and says it works well for her. Needless to say I got it> and am on my first refill.> > > I saw this pulmonary doc on November 7 and again on December 28. At> my first visit he took me for a walk with an oxometer and I dropped to> 75. In December I dropped to 82. I'm sorry but I don't know all of the> medical terms as of yet, but sure I will learn. At my first visit he> told me I need oxygen when walking. When the Oxygen Company visited my> home, they brought the whole store with them. I panicked. They told me> that the doctor had ordered oxygen 24/7 at level 2. The doctor also told> me that I could get a small container that would fit on my belt. The> company told me there was nothing like that. On my second doctor visit,> I asked him about it and he said that he would find a company that would> supply me with one. That company turned out to be the very same company> that I first dealt with.> > > This past Monday, a therapist from this company came to my home to> test me for an oxygen system that would only provide oxygen as needed.> She took me for several walks around my house and up and down the> stairs, and I failed on every level. It was only as she was about to> leave the house that she noticed that the doctor had written a script> for liquid oxygen. I don't want, nor will I use it.> > > My husband and I travel often and the liquid would not work, yet the> other so-called portable tanks only supply 45 minutes of oxygen. The> therapist also told me that the doctor wrote the script for level 2> oxygen at rest, and level 3 with strenuous activity. He mentioned> nothing about this to me.> > > My oxygen is at 96% at rest and the therapist said that although it> dropped when walking and climbing stairs, I have an immediate recovery> when I sit.> > > Needless to say I have not been myself since November. The more I> find out about this disease, the more depressed I become. I have to talk> myself out of bed every morning and force myself to do simple chores> around the house.> > > I am glad I found this group as you all seem so positive, and I need> that. I know I have rambled and perhaps don't make sense, but I just> needed to finally introduce myself and hope some of you can help me> through your experiences. Thanks> > >> > >> >> >> > >> > >> >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 my friend's husband is in a nursing home and refusing to wear his c pap machine no he does not have pf i suggested that she find out if just using o2 with a cannula would be ok i figure it's better than nothing what do you think Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: My first postTo: Breathe-Support Date: Saturday, January 16, 2010, 3:17 PM a cpap is a machine you can use if you have sleep apnea which I do. It gives you higher pressure of air and keeps you (me) from snoring. With oxygen added it has helped my sleep time a great deal. Yes I do still do light house work, dusting, vacuuming, make beds etc. I just take my time doing it and rest in between task barbara jean > > > > > Ariann Your situation is very much like mine. I am 71 had both hips replaced and one shoulder. I now have a knee that is acting up. I became very short of breathe about a year ago and after going through test they diagnosed IPF in June. I had been on a c pap for two years and am now on it with oxygen at night. My situation is a lot like yours. My level is good when I am setting or doing light work but falls during exertion ( 70 and 80's) I have a unit that works well for me and might you too. The machine is capable of filling my oxygen tanks (portable) which I use when shopping, walking, and heavy cleaning. The machine is hooked up to my c pap at night. I have two tanks, one I use at home and one I carry in my car for shopping.> I just had a pulmonary function test and a cat scan but dont have the results yet. I am anxious to see if they have changed since my test in June. My sister has IPF and Copd and goes to the same Dr. He told her that this condition IPF is an inherited disease which is good to know for family. Barb barbara jean > > > > From: arianne377 <Arianne377 (AT) comcast (DOT) net>> To: Breathe-Support@ yahoogroups. com> Sent: Thu, January 14, 2010 5:26:27 PM> Subject: My first post> > > Hello everyone. I signed on a week or so ago, have read most of the files and all of the messages since then.> My name is Ann, I reside in Massachusetts and am 70 years old. I have had 2 hip replacements, one in August of 2006 and the other in January of 2007. Other than that I have only had gall bladder surgery and a radical mastoidectomy.> In November of 2009 I was diagnosed with Idiopathic Pulmonary Fibrsis. I had never heard of this before my dx.> I really thought I had COPD, but the pulmonary doc said no. It's when he told me that he has a patient who had had it for five years and is doing well, that I began to see the seriousness of it all. He also said there is no cure, but suggested that I try NAC as his long-term patient uses it and says it works well for her. Needless to say I got it and am on my first refill.> I saw this pulmonary doc on November 7 and again on December 28. At my first visit he took me for a walk with an oxometer and I dropped to 75. In December I dropped to 82. I'm sorry but I don't know all of the medical terms as of yet, but sure I will learn. At my first visit he told me I need oxygen when walking. When the Oxygen Company visited my home, they brought the whole store with them. I panicked. They told me that the doctor had ordered oxygen 24/7 at level 2. The doctor also told me that I could get a small container that would fit on my belt. The company told me there was nothing like that. On my second doctor visit, I asked him about it and he said that he would find a company that would supply me with one. That company turned out to be the very same company that I first dealt with.> This past Monday, a therapist from this company came to my home to test me for an oxygen system that would only provide oxygen as needed. She took me for several walks around my house and up and down the stairs, and I failed on every level. It was only as she was about to leave the house that she noticed that the doctor had written a script for liquid oxygen. I don't want, nor will I use it. > My husband and I travel often and the liquid would not work, yet the other so-called portable tanks only supply 45 minutes of oxygen. The therapist also told me that the doctor wrote the script for level 2 oxygen at rest, and level 3 with strenuous activity. He mentioned nothing about this to me.> My oxygen is at 96% at rest and the therapist said that although it dropped when walking and climbing stairs, I have an immediate recovery when I sit. > Needless to say I have not been myself since November. The more I find out about this disease, the more depressed I become. I have to talk myself out of bed every morning and force myself to do simple chores around the house.> I am glad I found this group as you all seem so positive, and I need that. I know I have rambled and perhaps don't make sense, but I just needed to finally introduce myself and hope some of you can help me through your experiences. Thanks> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2010 Report Share Posted January 17, 2010 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Ariann Your situation is very much like mine. I am 71 had both > > hips > > > replaced and one shoulder. I now have a knee that is acting up. I > > became > > > very short of breathe about a year ago and after going through test > > they > > > diagnosed IPF in June. I had been on a c pap for two years and am > > now > > on > > > it with oxygen at night. My situation is a lot like yours. My > > level is > > > good when I am setting or doing light work but falls during > > exertion ( > > > 70 and 80's) I have a unit that works well for me and might you too. > > The > > > machine is capable of filling my oxygen tanks (portable) which I use > > > when shopping, walking, and heavy cleaning. The machine is hooked up > > to > > > my c pap at night. I have two tanks, one I use at home and one I > > carry > > > in my car for shopping. > > > > > I just had a pulmonary function test and a cat scan but dont > > have > > > the results yet. I am anxious to see if they have changed since my > > test > > > in June. My sister has IPF and Copd and goes to the same Dr. He told > > her > > > that this condition IPF is an inherited disease which is good to > > know > > > for family. Barb > > > > barbara jean > > > > > > > > > > > > > > > > > > > > > > > > > > > > From: arianne377 Arianne377@ .. > > > > > To: Breathe-Support@ yahoogroups. com > > > > > Sent: Thu, January 14, 2010 5:26:27 PM > > > > > Subject: My first post > > > > > > > > > > > > > > > > > > > > > > > Hello everyone. I signed on a week or so ago, have read most of > > the > > > files and all of the messages since then. > > > > > My name is Ann, I reside in Massachusetts and am 70 years old. I > > > have had 2 hip replacements, one in August of 2006 and the other in > > > January of 2007. Other than that I have only had gall bladder > > surgery > > > and a radical mastoidectomy. > > > > > In November of 2009 I was diagnosed with Idiopathic Pulmonary > > > Fibrsis. I had never heard of this before my dx. > > > > > I really thought I had COPD, but the pulmonary doc said no. It's > > > when he told me that he has a patient who had had it for five years > > and > > > is doing well, that I began to see the seriousness of it all. He > > also > > > said there is no cure, but suggested that I try NAC as his long-term > > > patient uses it and says it works well for her. Needless to say I > > got > > it > > > and am on my first refill. > > > > > I saw this pulmonary doc on November 7 and again on December 28. > > At > > > my first visit he took me for a walk with an oxometer and I > > dropped to > > > 75. In December I dropped to 82. I'm sorry but I don't know all of > > the > > > medical terms as of yet, but sure I will learn. At my first visit he > > > told me I need oxygen when walking. When the Oxygen Company > > visited my > > > home, they brought the whole store with them. I panicked. They > > told me > > > that the doctor had ordered oxygen 24/7 at level 2. The doctor also > > told > > > me that I could get a small container that would fit on my belt. The > > > company told me there was nothing like that. On my second doctor > > visit, > > > I asked him about it and he said that he would find a company that > > would > > > supply me with one. That company turned out to be the very same > > company > > > that I first dealt with. > > > > > This past Monday, a therapist from this company came to my > > home to > > > test me for an oxygen system that would only provide oxygen as > > needed. > > > She took me for several walks around my house and up and down the > > > stairs, and I failed on every level. It was only as she was about to > > > leave the house that she noticed that the doctor had written a > > script > > > for liquid oxygen. I don't want, nor will I use it. > > > > > My husband and I travel often and the liquid would not work, yet > > the > > > other so-called portable tanks only supply 45 minutes of oxygen. The > > > therapist also told me that the doctor wrote the script for level 2 > > > oxygen at rest, and level 3 with strenuous activity. He mentioned > > > nothing about this to me. > > > > > My oxygen is at 96% at rest and the therapist said that although > > it > > > dropped when walking and climbing stairs, I have an immediate > > recovery > > > when I sit. > > > > > Needless to say I have not been myself since November. The > > more I > > > find out about this disease, the more depressed I become. I have to > > talk > > > myself out of bed every morning and force myself to do simple chores > > > around the house. > > > > > I am glad I found this group as you all seem so positive, and I > > need > > > that. I know I have rambled and perhaps don't make sense, but I just > > > needed to finally introduce myself and hope some of you can help me > > > through your experiences. Thanks > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2010 Report Share Posted January 18, 2010 OOOH!! I needed that!! Wuz so nice to go out for a mile walk today with my Gizmo & be able to take my time and not have 2 rush 2 get back 2 work!!! I really enjoyed it!! Now, though, I am totally exhausted. Have spent the last 2 hours goin thru all my medical bills getting all the account numbers and dates of service ready to try and finish my disability application. I did it all sitting in the floor, and my back is killing me!! I should've known better, U would think!! Too dumb 4 my own good sum days!! CaroMissippi, COPD 2005, UIP January 2007, Sjogren syndrome July 2008, polymyositis/dermatomyositis November 2008, Fatty liver disease June 2009, Lupus (SLE)July 2009, mixed connective tissue disease August 2009 To: Breathe-Support Sent: Sun, January 17, 2010 7:58:18 PMSubject: Re: My first post Oooh Caro, welcome to ILT (Inspired Leisure Time) Hee Hee that should do for starters! I certainly look forwird to seeing more Posts from you.... lotsa, SGIO > >> >> >> >> >> >> >> >> >>> >>> >> >> >>> >> Ariann Your situation is very much like mine. I am 71 had both hips> >replaced and one shoulder. I now have a knee that is acting up. I became> >very short of breathe about a year ago and after going through test they> >diagnosed IPF in June. I had been on a c pap for two years and am now on> >it with oxygen at night. My situation is a lot like yours. My level is> >good when I am setting or doing light work but falls during exertion (> >70 and 80's) I have a unit that works well for me and might you too. The> >machine is capable of filling my oxygen tanks (portable) which I use> >when shopping, walking, and heavy cleaning. The machine is hooked up to> >my c pap at night. I have two tanks, one I use at home and one I carry> >in my car for shopping.> >> > I just had a pulmonary function test and a cat scan but dont have> >the results yet. I am anxious to see if they have changed since my test> >in June. My sister has IPF and Copd and goes to the same Dr. He told her> >that this condition IPF is an inherited disease which is good to know> >for family. Barb> >> barbara jean> >>> >> >> >> >> >> >> >> >> >> From: arianne377 Arianne377@ ..> >> > To: Breathe-Support@ yahoogroups. com> >> > Sent: Thu, January 14, 2010 5:26:27 PM> >> > Subject: My first post> >> >> >> >> >> >> >>> >> Hello everyone. I signed on a week or so ago, have read most of the> >files and all of the messages since then.> >> > My name is Ann, I reside in Massachusetts and am 70 years old. I> >have had 2 hip replacements, one in August of 2006 and the other in> >January of 2007. Other than that I have only had gall bladder surgery> >and a radical mastoidectomy.> >> > In November of 2009 I was diagnosed with Idiopathic Pulmonary> >Fibrsis. I had never heard of this before my dx.> >> > I really thought I had COPD, but the pulmonary doc said no. It's> >when he told me that he has a patient who had had it for five years and> >is doing well, that I began to see the seriousness of it all. He also> >said there is no cure, but suggested that I try NAC as his long-term> >patient uses it and says it works well for her. Needless to say I got it> >and am on my first refill.> >> > I saw this pulmonary doc on November 7 and again on December 28. At> >my first visit he took me for a walk with an oxometer and I dropped to> >75. In December I dropped to 82. I'm sorry but I don't know all of the> >medical terms as of yet, but sure I will learn. At my first visit he> >told me I need oxygen when walking. When the Oxygen Company visited my> >home, they brought the whole store with them. I panicked. They told me> >that the doctor had ordered oxygen 24/7 at level 2. The doctor also told> >me that I could get a small container that would fit on my belt. The> >company told me there was nothing like that. On my second doctor visit,> >I asked him about it and he said that he would find a company that would> >supply me with one. That company turned out to be the very same company> >that I first dealt with.> >> > This past Monday, a therapist from this company came to my home to> >test me for an oxygen system that would only provide oxygen as needed.> >She took me for several walks around my house and up and down the> >stairs, and I failed on every level. It was only as she was about to> >leave the house that she noticed that the doctor had written a script> >for liquid oxygen. I don't want, nor will I use it.> >> > My husband and I travel often and the liquid would not work, yet the> >other so-called portable tanks only supply 45 minutes of oxygen. The> >therapist also told me that the doctor wrote the script for level 2> >oxygen at rest, and level 3 with strenuous activity. He mentioned> >nothing about this to me.> >> > My oxygen is at 96% at rest and the therapist said that although it> >dropped when walking and climbing stairs, I have an immediate recovery> >when I sit.> >> > Needless to say I have not been myself since November. The more I> >find out about this disease, the more depressed I become. I have to talk> >myself out of bed every morning and force myself to do simple chores> >around the house.> >> > I am glad I found this group as you all seem so positive, and I need> >that. I know I have rambled and perhaps don't make sense, but I just> >needed to finally introduce myself and hope some of you can help me> >through your experiences. Thanks> >> >> >> >> >>> >>> >> >> >> >> >>> >> >> Quote Link to comment Share on other sites More sharing options...
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