Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 bruce i'm glad the cat thinks it is a toy my dog ignores it 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, 4:15 PM PinkMy reservoir is fairly centralized but I use a 75 foot hose and thatallows me to reach any spot in the house. For a 50 foot hose to work I'dprobably have to put it in the living room between the recliners and thetv or something. As it is 50 feet wouldn't get me to my closet. From theliving area there is a short winding privacy type entry to the masterbedroom and then you go through the bedroom and then through the bath toget to the closet. But, I've had no problem with a 75 foot and I amstill getting the right flow. I do check with a liter meter. I think ifI was on a very high flow I might lose a little and I also think forsome reason concentrators lose flow over distance more than liquid. Myonly problem with the hose is that Mandi thinks it, like everything elsein the world, is a toy.> > > >> > > >> > > >> > > >> > >> > >> > > >> > >> > > Ariann Your situation is very much like mine. I am 71 had bothhips> > 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 amnow on> > it with oxygen at night. My situation is a lot like yours. My levelis> > 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 Icarry> > in my car for shopping.> > > > I just had a pulmonary function test and a cat scan but donthave> > 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 toknow> > 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 ofthe> > 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 bladdersurgery> > 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. Healso> > 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 Igot 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 droppedto> > 75. In December I dropped to 82. I'm sorry but I don't know all ofthe> > 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 visitedmy> > home, they brought the whole store with them. I panicked. They toldme> > 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 hometo> > test me for an oxygen system that would only provide oxygen asneeded.> > 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 ascript> > 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 immediaterecovery> > when I sit.> > > > Needless to say I have not been myself since November. The moreI> > 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 bruce i'm glad the cat thinks it is a toy my dog ignores it 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, 4:15 PM PinkMy reservoir is fairly centralized but I use a 75 foot hose and thatallows me to reach any spot in the house. For a 50 foot hose to work I'dprobably have to put it in the living room between the recliners and thetv or something. As it is 50 feet wouldn't get me to my closet. From theliving area there is a short winding privacy type entry to the masterbedroom and then you go through the bedroom and then through the bath toget to the closet. But, I've had no problem with a 75 foot and I amstill getting the right flow. I do check with a liter meter. I think ifI was on a very high flow I might lose a little and I also think forsome reason concentrators lose flow over distance more than liquid. Myonly problem with the hose is that Mandi thinks it, like everything elsein the world, is a toy.> > > >> > > >> > > >> > > >> > >> > >> > > >> > >> > > Ariann Your situation is very much like mine. I am 71 had bothhips> > 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 amnow on> > it with oxygen at night. My situation is a lot like yours. My levelis> > 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 Icarry> > in my car for shopping.> > > > I just had a pulmonary function test and a cat scan but donthave> > 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 toknow> > 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 ofthe> > 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 bladdersurgery> > 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. Healso> > 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 Igot 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 droppedto> > 75. In December I dropped to 82. I'm sorry but I don't know all ofthe> > 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 visitedmy> > home, they brought the whole store with them. I panicked. They toldme> > 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 hometo> > test me for an oxygen system that would only provide oxygen asneeded.> > 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 ascript> > 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 immediaterecovery> > when I sit.> > > > Needless to say I have not been myself since November. The moreI> > 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 Pink With sleep apnea the flow is much higher because you're needing air, not just oxygen. If his oxygen is ok, using oxygen could be dangerous for him. What I do suggest is that he gets them to let him try all sorts of different masks or systems. You can get cannulas for CPAP's. People who can't tolerate a mask use them. Some of the masks they supply are very uncomfortable. uses the blue gel mask like Sher uses. But, maybe a cannula would work for him. > >  > > > > > > > > > > > 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 16, 2010 Report Share Posted January 16, 2010 i also suggested trying different types of masks i think she said they did i think part of the problem is his mental attitude, being depressed about having to live in a nursing and not being well enough to go home just the total change in his health never met the man, but this is the impression that i get from the wife 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, 4:19 PM PinkWith sleep apnea the flow is much higher because you're needing air, notjust oxygen. If his oxygen is ok, using oxygen could be dangerous forhim.What I do suggest is that he gets them to let him try all sorts ofdifferent masks or systems. You can get cannulas for CPAP's. People whocan't tolerate a mask use them. Some of the masks they supply are veryuncomfortable. uses the blue gel mask like Sher uses. But, maybea cannula would work for him.> > Â> >> >> >>> >>> Ariann  Your situation is very much like mine. I am71 had both hips replaced and one shoulder. I now have a kneethat is acting up. I became very short of breathe about a year agoand after going through test they diagnosed IPF in June. I had beenon a c pap for two years and am now on it with oxygen at night. Mysituation is a lot like yours. My level is good when I am settingor doing light work but falls during exertion ( 70 and 80's) Ihave a unit that works well for me and might you too. The machine iscapable of filling my oxygen tanks (portable) which I use when shopping,walking, and heavy cleaning.  The machine is hooked up to my cpap at night. I have two tanks, one I use at home and one I carryin my car for shopping.> >  I just had a pulmonary function test and a cat scan but donthave the results yet. I am anxious to see if they have changedsince my test in June. My sister has IPF and Copd and goes to thesame Dr. He told her that this condition IPF is an inheriteddisease 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> >> > Â> >> Hello everyone. I signed on a week or so ago, have read most of thefiles and all of the messages since then.> > My name is Ann, I reside in Massachusetts and am 70 years old. Ihave had 2 hip replacements, one in August of 2006 and the other inJanuary of 2007. Other than that I have only had gall bladder surgeryand a radical mastoidectomy.> > In November of 2009 I was diagnosed with Idiopathic PulmonaryFibrsis. I had never heard of this before my dx.> > I really thought I had COPD, but the pulmonary doc said no. It'swhen he told me that he has a patient who had had it for five years andis doing well, that I began to see the seriousness of it all. He alsosaid there is no cure, but suggested that I try NAC as his long-termpatient uses it and says it works well for her. Needless to say I got itand am on my first refill.> > I saw this pulmonary doc on November 7 and again on December 28. Atmy first visit he took me for a walk with an oxometer and I dropped to75. In December I dropped to 82. I'm sorry but I don't know all of themedical terms as of yet, but sure I will learn. At my first visit hetold me I need oxygen when walking. When the Oxygen Company visited myhome, they brought the whole store with them. I panicked. They told methat the doctor had ordered oxygen 24/7 at level 2. The doctor also toldme that I could get a small container that would fit on my belt. Thecompany 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 wouldsupply me with one. That company turned out to be the very same companythat I first dealt with.> > This past Monday, a therapist from this company came to my home totest 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 thestairs, and I failed on every level. It was only as she was about toleave the house that she noticed that the doctor had written a scriptfor liquid oxygen. I don't want, nor will I use it.> > My husband and I travel often and the liquid would not work, yet theother so-called portable tanks only supply 45 minutes of oxygen. Thetherapist also told me that the doctor wrote the script for level 2oxygen at rest, and level 3 with strenuous activity. He mentionednothing about this to me.> > My oxygen is at 96% at rest and the therapist said that although itdropped when walking and climbing stairs, I have an immediate recoverywhen I sit.> > Needless to say I have not been myself since November. The more Ifind out about this disease, the more depressed I become. I have to talkmyself out of bed every morning and force myself to do simple choresaround the house.> > I am glad I found this group as you all seem so positive, and I needthat. I know I have rambled and perhaps don't make sense, but I justneeded to finally introduce myself and hope some of you can help methrough 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 Thanks, Joyce. 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 4:15:23 PMSubject: Re: Re: My first post great idea barb 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 Pink My ex father in law never wore his. Now, I attributed it at least partially to the center he went to and their limited assistance. When has her night to first use the CPAP at the sleep center, they had 14 different styles of masks for her to try. She tried on three or four and then the minute she put the blue gel mask on she said, this is it. Surprisingly, she didn't like the cannula. Felt better with a mask than " that thing sticking in my nose. " I had a friend who used the cannula. I'm sure its mental attitude and thats so much. We decide something is bad and exaggerate the problem. Whether its CPAP masks, or oxygen or glasses or whatever. If a mask would help me sleep better I'd wear it. If oxygen protects my heart, I use it. If glasses help me see, I wear them. I'm just glad there are devices to help me. > > >  > > > > > > > > > > > > > > > > > > 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 16, 2010 Report Share Posted January 16, 2010 Pink My ex father in law never wore his. Now, I attributed it at least partially to the center he went to and their limited assistance. When has her night to first use the CPAP at the sleep center, they had 14 different styles of masks for her to try. She tried on three or four and then the minute she put the blue gel mask on she said, this is it. Surprisingly, she didn't like the cannula. Felt better with a mask than " that thing sticking in my nose. " I had a friend who used the cannula. I'm sure its mental attitude and thats so much. We decide something is bad and exaggerate the problem. Whether its CPAP masks, or oxygen or glasses or whatever. If a mask would help me sleep better I'd wear it. If oxygen protects my heart, I use it. If glasses help me see, I wear them. I'm just glad there are devices to help me. > > >  > > > > > > > > > > > > > > > > > > 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 16, 2010 Report Share Posted January 16, 2010 I still able do my own housework but I need my O2 on 3-4 lpm, but I can't do it all in one day like I used too. I can only do about 30 min of continuous work and then I have to rest for about 2 hours! C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Sat, January 16, 2010 7:57:02 AMSubject: Re: My first post What is a c pap? Also, are any of you able to do housework, change beds, vacuum, dust, etc still? ----- "barbara carr" <bjcarr2004@sbcgloba l.net> wrote: > > > > > 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 16, 2010 Report Share Posted January 16, 2010 I still able do my own housework but I need my O2 on 3-4 lpm, but I can't do it all in one day like I used too. I can only do about 30 min of continuous work and then I have to rest for about 2 hours! C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Sat, January 16, 2010 7:57:02 AMSubject: Re: My first post What is a c pap? Also, are any of you able to do housework, change beds, vacuum, dust, etc still? ----- "barbara carr" <bjcarr2004@sbcgloba l.net> wrote: > > > > > 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 16, 2010 Report Share Posted January 16, 2010 I didn't do much housework when I was healthy!  LOL...Seriously, I can make the bed, using the 5 minute rule, do dishes, laundry and other mundane tasks.  I will not vacuum or dust due to the "dust".  Too much stirred up and I will cough my lungs up. It's not worth the effort.  Some tasks are better left to my better half (I'm sure he doesn't agree) but he's pretty good at taking care of necessities.Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd I pray you enough.....Subject: Re: My first postTo: Breathe-Support 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 didn't do much housework when I was healthy!  LOL...Seriously, I can make the bed, using the 5 minute rule, do dishes, laundry and other mundane tasks.  I will not vacuum or dust due to the "dust".  Too much stirred up and I will cough my lungs up. It's not worth the effort.  Some tasks are better left to my better half (I'm sure he doesn't agree) but he's pretty good at taking care of necessities.Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd I pray you enough.....Subject: Re: My first postTo: Breathe-Support 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 Bruce, Ann, Pink,I agree...My husband made me a U area in the laundry room so I could do the laundry.  Washer and dryer in the middle, tables on either side.  He takes all laundry in and out of the room.  Dirty laundry goes on the table on the left side by the washer.  I can load it from there.  I can move the laundry from the washer to the dryer.  I sit down in front of the dryer to remove clothes and use the table on the right side of the dryer to fold clean clothes.  Hubby also added a hanging rack over the right side table so I can hang anything I don't want folded.  It works great!Even though I can do these things, I still need my 02.Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd I pray you enough.....Subject: Re: My first postTo: Breathe-Support Date: Saturday, January 16, 2010, 12:50 PM  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 Anne,Woody sounds like a keeper!  It took me about a year to get my husband to acknowledge that I had a function problem and start doing things to make my life easier.  Thank goodness I have a single story home and can centrally locate my concentrator for use in the entire house.  Good luck; sounds like you are really getting a handle on it.Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd I pray you enough.....> > 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 Roxanne, Can I borrow your husband? I need one of those! C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Sat, January 16, 2010 2:50:21 PMSubject: Re: Re: My first post Bruce, Ann, Pink, I agree...My husband made me a U area in the laundry room so I could do the laundry. Washer and dryer in the middle, tables on either side. He takes all laundry in and out of the room. Dirty laundry goes on the table on the left side by the washer. I can load it from there. I can move the laundry from the washer to the dryer. I sit down in front of the dryer to remove clothes and use the table on the right side of the dryer to fold clean clothes. Hubby also added a hanging rack over the right side table so I can hang anything I don't want folded. It works great! Even though I can do these things, I still need my 02.Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough...... From: Bruce <brucemoreland@ gmail.com>Subject: Re: My first postTo: Breathe-Support@ yahoogroups. comDate: 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 Thanks ---he's a keeper!Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd I pray you enough..... From: Bruce <brucemoreland@ gmail.com>Subject: Re: My first postTo: Breathe-Support@ yahoogroups. comDate: 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 All great tips. Carroll IPF 3/09ariannei 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 cordPink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09www.transplantfund.orgFrom: Bruce <brucemoreland (AT) gmail (DOT) com>Subject: Re: My first postTo: Breathe-Support Date: Saturday, January 16, 2010, 11:33 AM ArianneA CPAP is a piece of equipment used to provide air to persons sufferingfrom sleep apnea.Not that I mind not doing those items especially, but no, I could not dohousework, change beds, vacuum etc. One technique many use here is the15 minute rule where they limit themselves to 15 minutes at a time. Forme any lifting, pushing and pulling drops my saturations significantlyand 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 onwould be something I can't do. It's just that pulling motion. Laundry isprobably the most difficult thing I do, especially moving the wash fromthe washer to the dryer and then getting it out of the dryer. I turn myoxygen up and do it very slowly. I will pause after each handful (andtake smaller handfuls than I would have) of clothing I move. So, itslift from washer, put in dryer, pause and pursed lip breathing.Now, each of us is at a different point and what we can do variesgreatly. But, part of my current living arrangement was that we would beable to have a weekly housekeeper. She comes once a week for 4 hours. Iactually found her through care.com and she's quite reasonable. If notfor the cats, once every other week would be fine as the two adults herearen't too messy, but the monstous puffs of fur scampering around docreate a more frequent need.> >> >> >> >>>> >>> Ariann Your situation is very much like mine. I am 71 had both hipsreplaced and one shoulder. I now have a knee that is acting up. I becamevery short of breathe about a year ago and after going through test theydiagnosed IPF in June. I had been on a c pap for two years and am now onit with oxygen at night. My situation is a lot like yours. My level isgood 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. Themachine is capable of filling my oxygen tanks (portable) which I usewhen shopping, walking, and heavy cleaning. The machine is hooked up tomy c pap at night. I have two tanks, one I use at home and one I carryin my car for shopping.> > I just had a pulmonary function test and a cat scan but dont havethe results yet. I am anxious to see if they have changed since my testin June. My sister has IPF and Copd and goes to the same Dr. He told herthat this condition IPF is an inherited disease which is good to knowfor 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 thefiles and all of the messages since then.> > My name is Ann, I reside in Massachusetts and am 70 years old. Ihave had 2 hip replacements, one in August of 2006 and the other inJanuary of 2007. Other than that I have only had gall bladder surgeryand a radical mastoidectomy.> > In November of 2009 I was diagnosed with Idiopathic PulmonaryFibrsis. I had never heard of this before my dx.> > I really thought I had COPD, but the pulmonary doc said no. It'swhen he told me that he has a patient who had had it for five years andis doing well, that I began to see the seriousness of it all. He alsosaid there is no cure, but suggested that I try NAC as his long-termpatient uses it and says it works well for her. Needless to say I got itand am on my first refill.> > I saw this pulmonary doc on November 7 and again on December 28. Atmy first visit he took me for a walk with an oxometer and I dropped to75. In December I dropped to 82. I'm sorry but I don't know all of themedical terms as of yet, but sure I will learn. At my first visit hetold me I need oxygen when walking. When the Oxygen Company visited myhome, they brought the whole store with them. I panicked. They told methat the doctor had ordered oxygen 24/7 at level 2. The doctor also toldme that I could get a small container that would fit on my belt. Thecompany 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 wouldsupply me with one. That company turned out to be the very same companythat I first dealt with.> > This past Monday, a therapist from this company came to my home totest 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 thestairs, and I failed on every level. It was only as she was about toleave the house that she noticed that the doctor had written a scriptfor liquid oxygen. I don't want, nor will I use it.> > My husband and I travel often and the liquid would not work, yet theother so-called portable tanks only supply 45 minutes of oxygen. Thetherapist also told me that the doctor wrote the script for level 2oxygen at rest, and level 3 with strenuous activity. He mentionednothing about this to me.> > My oxygen is at 96% at rest and the therapist said that although itdropped when walking and climbing stairs, I have an immediate recoverywhen I sit.> > Needless to say I have not been myself since November. The more Ifind out about this disease, the more depressed I become. I have to talkmyself out of bed every morning and force myself to do simple choresaround the house.> > I am glad I found this group as you all seem so positive, and I needthat. I know I have rambled and perhaps don't make sense, but I justneeded to finally introduce myself and hope some of you can help methrough 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 Thanks for the tip on the Shark mop I was thinking of buying one. Carroll IPF 3/09Pink/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 Patti: I need a favor. Do you have Kathy Brown's email address at University of Chicago. She gave me her card and I misplaced it. I visited Dr. Noth on Jan 11. My CRT Skan does not show much progress and I am making it without supplemental oxygen. Winter has made me weaker and I am fighting with a cold that will not go away. There is still very slim chance that I might have PF rather than IPF. I am looking forward to March 15, 2010 which I hope marks the end of harsh winter weather. If you can provide me with K B's email address I will provide you with less cold weather in Indianapolis--good for a day or two. Burns Subject: Re: Re: My first postTo: Breathe-Support Date: Saturday, January 16, 2010, 9:19 AM , I am not sure.....When I was there Dec 16th for my consultation I had just had a bladder infection and had been on Macrobid just a few days before (I didn't know about the danger until that day) and Dr. Strek said to never take another one ever again. She wants me to return next month and have all the tests done again to see if my PFT shows an improvement. The damage that is done will not get better but I am not sure if the progression will stop or not. I guess I will know next month. Patti Indianapolis PF 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 It is available right here: https://www.ipfnet.org/ipf-front-page/uofchicago > > > From: Patti napa73@... > Subject: Re: Re: My first post > To: Breathe-Support > Date: Saturday, January 16, 2010, 9:19 AM > > >  > > > > > , > I am not sure.....When I was there Dec 16th for my consultation I had just had a bladder infection and had been on Macrobid just a few days before (I didn't know about the danger until that day) and Dr. Strek said to never take another one ever again. She wants me to return next month and have all the tests done again to see if my PFT shows an improvement. The damage that is done will not get better but I am not sure if the progression will stop or not.  I guess I will know next month. >  > Patti Indianapolis PF 2007 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 Carroll Well, some like them and some don't, but I do like it. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > 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 Ditto 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, 4:30 PM PinkMy ex father in law never wore his. Now, I attributed it at leastpartially to the center he went to and their limited assistance. When has her night to first use the CPAP at the sleep center, they had14 different styles of masks for her to try. She tried on three or fourand then the minute she put the blue gel mask on she said, this is it.Surprisingly, she didn't like the cannula. Felt better with a mask than"that thing sticking in my nose." I had a friend who used the cannula.I'm sure its mental attitude and thats so much. We decide something isbad and exaggerate the problem. Whether its CPAP masks, or oxygen orglasses or whatever. If a mask would help me sleep better I'd wear it.If oxygen protects my heart, I use it. If glasses help me see, I wearthem. I'm just glad there are devices to help me.> > > Â> > >> > >> > >> >> > >> >> > Ariann  Your situation is very much like mine. Iam> 71 had both hips replaced and one shoulder. I now have aknee> that is acting up. I became very short of breathe about a yearago> and after going through test they diagnosed IPF in June. I hadbeen> on a c pap for two years and am now on it with oxygen at night.ÂMy> situation is a lot like yours. My level is good when I amsetting> or doing light work but falls during exertion ( 70 and80'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 whenshopping,> walking, and heavy cleaning.  The machine is hooked up tomy c> pap at night. I have two tanks, one I use at home and one Icarry> in my car for shopping.> > >  I just had a pulmonary function test and a cat scan butdont> 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 tothe> 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> > >> > > Â> > >> > 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 When i could no longer change the sheets on my bed..i realized that i was disabled..it was a horrible reality! Thankfully-i qualify for a inhome attendant! It is a program offered by the state for aged & disalbed IN home attendant services, Ltd 1 -they come & evaluate u at your home & then you can pick a family member or they will assign you someone to come & help daily help you..whether it be to wash, shop, cook, clean, help you bath, dress, iron..i mean..it's wonderful. They determine how many hours and days they assign help for you. Thankfully my sister was availabe to help me when she could, but now she's actually getting paid to come daily and what a blessing. If any of you can..it would be worth it to help you especially those of you that live alone. Dot/uip10/08/42/sa,tx From: Bruce <brucemoreland@ gmail.com>Subject: Re: My first postTo: Breathe-Support@ yahoogroups. comDate: 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 17, 2010 Report Share Posted January 17, 2010 sounds great we have a laundry closet in present house, no room on either side would have worked in my previous house 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, 5:50 PM Bruce, Ann, Pink, I agree...My husband made me a U area in the laundry room so I could do the laundry. Washer and dryer in the middle, tables on either side. He takes all laundry in and out of the room. Dirty laundry goes on the table on the left side by the washer. I can load it from there. I can move the laundry from the washer to the dryer. I sit down in front of the dryer to remove clothes and use the table on the right side of the dryer to fold clean clothes. Hubby also added a hanging rack over the right side table so I can hang anything I don't want folded. It works great! Even though I can do these things, I still need my 02.Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough..... From: Bruce <brucemoreland@ gmail.com>Subject: Re: My first postTo: Breathe-Support@ yahoogroups. comDate: 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 17, 2010 Report Share Posted January 17, 2010 Dot thanks for reminding us that your sister can get paid for helping you it can be a great system 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, 10:15 PM When i could no longer change the sheets on my bed..i realized that i was disabled..it was a horrible reality! Thankfully-i qualify for a inhome attendant! It is a program offered by the state for aged & disalbed IN home attendant services, Ltd 1 -they come & evaluate u at your home & then you can pick a family member or they will assign you someone to come & help daily help you..whether it be to wash, shop, cook, clean, help you bath, dress, iron..i mean..it's wonderful. They determine how many hours and days they assign help for you. Thankfully my sister was availabe to help me when she could, but now she's actually getting paid to come daily and what a blessing. If any of you can..it would be worth it to help you especially those of you that live alone. Dot/uip10/08/ 42/sa,tx From: Bruce <brucemoreland@ gmail.com>Subject: Re: My first postTo: Breathe-Support@ yahoogroups. comDate: 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 17, 2010 Report Share Posted January 17, 2010 Bruce... Hooray for . The blue gel is it ok. My choice too and I'm still wearing the same type. Hope all well with you. I'm slowly going through nearly 400 posts so I hope I don't read anything not well with further on! MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Bruce Sent: Saturday, January 16, 2010 1:30 PM To: Breathe-Support Subject: Re: My first post PinkMy ex father in law never wore his. Now, I attributed it at leastpartially to the center he went to and their limited assistance. When has her night to first use the CPAP at the sleep center, they had14 different styles of masks for her to try. She tried on three or fourand then the minute she put the blue gel mask on she said, this is it.Surprisingly, she didn't like the cannula. Felt better with a mask than"that thing sticking in my nose." I had a friend who used the cannula.I'm sure its mental attitude and thats so much. We decide something isbad and exaggerate the problem. Whether its CPAP masks, or oxygen orglasses or whatever. If a mask would help me sleep better I'd wear it.If oxygen protects my heart, I use it. If glasses help me see, I wearthem. I'm just glad there are devices to help me.> > > Â> > >> > >> > >> >> > >> >> > Ariann  Your situation is very much like mine. Iam> 71 had both hips replaced and one shoulder. I now have aknee> that is acting up. I became very short of breathe about a yearago> and after going through test they diagnosed IPF in June. I hadbeen> on a c pap for two years and am now on it with oxygen at night.ÂMy> situation is a lot like yours. My level is good when I amsetting> or doing light work but falls during exertion ( 70 and80'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 whenshopping,> walking, and heavy cleaning.  The machine is hooked up tomy c> pap at night. I have two tanks, one I use at home and one Icarry> in my car for shopping.> > >  I just had a pulmonary function test and a cat scan butdont> 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 tothe> 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> > >> > > Â> > >> > 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> > >> > >> >> > >> > >> >> No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.145/2626 - Release Date: 01/15/10 23:35:00 Quote Link to comment Share on other sites More sharing options...
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