Guest guest Posted November 10, 2009 Report Share Posted November 10, 2009 Cees here are some more tips that i thought of: More tips when sleeping I put the O2 tube under my t-shirt to hold it in place a lady I know who was waiting for a heart-lung transplant was so weak that she used lots of wash cloths to dry herself off after bathing – the towel was too heavy take a notebook to all doctor appointments develop a system for collecting all papers such as lab results, x-ray reports, pft’s, 6 min walks I use 3 ring binders some people in the transplant support group take a tape recorder to their doctor appointments if the O2 tubing gets caught on door knobs and drawers – take knobs off – the kitchen drawers and cabinets in my current house can be opened without the knobs I even took off some of the door stops on the bottom of the baseboard we should really take off the bedroom door and sand the bottom since the tube frequently gets caught on the door when leaving the bedroom when Lou was using 3 concentrators, her husband put them in a separate room, opened the window for ventilation and closed the door to decrease the noise from the rest of the house I don’t know how the 3 concentrator tubes were connected into one cannula for her use Please correct the details about Lou's 3 concentrators -- this is the way I remember it Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2009 Report Share Posted November 10, 2009 Cees, in the past there has been a lot of differing of opinion as to weather we can cook, on a gas stove or gas grill etc Maybe we should include a section on living Safely while using O2. I cook with gas and use a gas grill all the time, am I going to blow myself up? I am extremely careful, but many recommend not getting within 6 feet of an open flame, which means I couldn't even walk through my kitchen. Also does it matter how many liters we are using? I want to be safe but, I currently love cooking and Its one thing I can still do so, am I gonna splode? I feel SO LUCKY, I was diagnosed in 06, but formally 1/09 and continue to do things pretty much like I used to except have to drag O2 around all the time, tiring quickly and coughing etc.. But LUCKY because 1, I just got the h1n1 shot....AND 2, I am leaving for a 14 day European Cruise in three days! My O2 supplier will loan me a Sequal 2 and three batteries as well as a desktop battery charger. Three batteries should get me througth the 10 hr flight. I just found a site that sells Sequal accessories and bought a 5" wheel cart (mfg by Sequel) so I can get around on cobblestone and easier to pull around the ship. That's another section for the book...."O2 equipment Your O2 supplier won't tell you about" Most of us learned over time from the group, or our own research. One other thing, I think we should get out the word, with hand out stuff, like small notepads. refrigerator magnets, pens and pencils, magnets for cars like the support our troops, and other things like the breast cancer things with the pink ribbons etc. I'm just saying... Bob IPF 1/09 5 bypasses 9/12/09 Subject: tips and more tipsTo: breathe-support Date: Tuesday, November 10, 2009, 9:06 AM Cees here are some more tips that i thought of: More tips when sleeping I put the O2 tube under my t-shirt to hold it in place a lady I know who was waiting for a heart-lung transplant was so weak that she used lots of wash cloths to dry herself off after bathing – the towel was too heavy take a notebook to all doctor appointments develop a system for collecting all papers such as lab results, x-ray reports, pft’s, 6 min walks I use 3 ring binders some people in the transplant support group take a tape recorder to their doctor appointments if the O2 tubing gets caught on door knobs and drawers – take knobs off – the kitchen drawers and cabinets in my current house can be opened without the knobs I even took off some of the door stops on the bottom of the baseboard we should really take off the bedroom door and sand the bottom since the tube frequently gets caught on the door when leaving the bedroom when Lou was using 3 concentrators, her husband put them in a separate room, opened the window for ventilation and closed the door to decrease the noise from the rest of the house I don’t know how the 3 concentrator tubes were connected into one cannula for her use Please correct the details about Lou's 3 concentrators -- this is the way I remember it Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2009 Report Share Posted November 10, 2009 With all respect to 's suggestion, we need to focus on who is our audience. In my opinion - and my opions are rarely humble - I think our audience should be the general public which is generally ignorant of this deadly disease. It is the general public which will provide the financial support needed for provide research. 's suggestion can be found within the individual stories if the writer will work into his/her daily difficulties dealing with the disease. PS I have taught writing at three different schools: Texas A & M, University of land and University of Maine as an adjunct professor. I usually didn't stay too long because I couldn't live on an adjunct's salary. I like to eat, you know. And to sleep on something other than a park bench. Jack79/IPF - UIP/dx06/05 Maine To: Breathe-Support Sent: Tue, November 10, 2009 2:14:43 PMSubject: Re: tips and more tips Cees, in the past there has been a lot of differing of opinion as to weather we can cook, on a gas stove or gas grill etc Maybe we should include a section on living Safely while using O2. I cook with gas and use a gas grill all the time, am I going to blow myself up? I am extremely careful, but many recommend not getting within 6 feet of an open flame, which means I couldn't even walk through my kitchen. Also does it matter how many liters we are using? I want to be safe but, I currently love cooking and Its one thing I can still do so, am I gonna splode? I feel SO LUCKY, I was diagnosed in 06, but formally 1/09 and continue to do things pretty much like I used to except have to drag O2 around all the time, tiring quickly and coughing etc.. But LUCKY because 1, I just got the h1n1 shot....AND 2, I am leaving for a 14 day European Cruise in three days! My O2 supplier will loan me a Sequal 2 and three batteries as well as a desktop battery charger. Three batteries should get me througth the 10 hr flight. I just found a site that sells Sequal accessories and bought a 5" wheel cart (mfg by Sequel) so I can get around on cobblestone and easier to pull around the ship. That's another section for the book...."O2 equipment Your O2 supplier won't tell you about" Most of us learned over time from the group, or our own research. One other thing, I think we should get out the word, with hand out stuff, like small notepads. refrigerator magnets, pens and pencils, magnets for cars like the support our troops, and other things like the breast cancer things with the pink ribbons etc. I'm just saying... Bob IPF 1/09 5 bypasses 9/12/09 From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>Subject: tips and more tipsTo: breathe-support@ yahoogroups. comDate: Tuesday, November 10, 2009, 9:06 AM Cees here are some more tips that i thought of: More tips when sleeping I put the O2 tube under my t-shirt to hold it in place a lady I know who was waiting for a heart-lung transplant was so weak that she used lots of wash cloths to dry herself off after bathing – the towel was too heavy take a notebook to all doctor appointments develop a system for collecting all papers such as lab results, x-ray reports, pft’s, 6 min walks I use 3 ring binders some people in the transplant support group take a tape recorder to their doctor appointments if the O2 tubing gets caught on door knobs and drawers – take knobs off – the kitchen drawers and cabinets in my current house can be opened without the knobs I even took off some of the door stops on the bottom of the baseboard we should really take off the bedroom door and sand the bottom since the tube frequently gets caught on the door when leaving the bedroom when Lou was using 3 concentrators, her husband put them in a separate room, opened the window for ventilation and closed the door to decrease the noise from the rest of the house I don’t know how the 3 concentrator tubes were connected into one cannula for her use Please correct the details about Lou's 3 concentrators -- this is the way I remember it Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2009 Report Share Posted November 10, 2009 WOW Bob you gavr me a ton of information....would also like those ans. <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: Breathe-Support Sent: Tue, November 10, 2009 2:14:43 PMSubject: Re: tips and more tips Cees, in the past there has been a lot of differing of opinion as to weather we can cook, on a gas stove or gas grill etc Maybe we should include a section on living Safely while using O2. I cook with gas and use a gas grill all the time, am I going to blow myself up? I am extremely careful, but many recommend not getting within 6 feet of an open flame, which means I couldn't even walk through my kitchen. Also does it matter how many liters we are using? I want to be safe but, I currently love cooking and Its one thing I can still do so, am I gonna splode? I feel SO LUCKY, I was diagnosed in 06, but formally 1/09 and continue to do things pretty much like I used to except have to drag O2 around all the time, tiring quickly and coughing etc.. But LUCKY because 1, I just got the h1n1 shot....AND 2, I am leaving for a 14 day European Cruise in three days! My O2 supplier will loan me a Sequal 2 and three batteries as well as a desktop battery charger. Three batteries should get me througth the 10 hr flight. I just found a site that sells Sequal accessories and bought a 5" wheel cart (mfg by Sequel) so I can get around on cobblestone and easier to pull around the ship. That's another section for the book...."O2 equipment Your O2 supplier won't tell you about" Most of us learned over time from the group, or our own research. One other thing, I think we should get out the word, with hand out stuff, like small notepads. refrigerator magnets, pens and pencils, magnets for cars like the support our troops, and other things like the breast cancer things with the pink ribbons etc. I'm just saying... Bob IPF 1/09 5 bypasses 9/12/09 From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>Subject: tips and more tipsTo: breathe-support@ yahoogroups. comDate: Tuesday, November 10, 2009, 9:06 AM Cees here are some more tips that i thought of: More tips when sleeping I put the O2 tube under my t-shirt to hold it in place a lady I know who was waiting for a heart-lung transplant was so weak that she used lots of wash cloths to dry herself off after bathing – the towel was too heavy take a notebook to all doctor appointments develop a system for collecting all papers such as lab results, x-ray reports, pft’s, 6 min walks I use 3 ring binders some people in the transplant support group take a tape recorder to their doctor appointments if the O2 tubing gets caught on door knobs and drawers – take knobs off – the kitchen drawers and cabinets in my current house can be opened without the knobs I even took off some of the door stops on the bottom of the baseboard we should really take off the bedroom door and sand the bottom since the tube frequently gets caught on the door when leaving the bedroom when Lou was using 3 concentrators, her husband put them in a separate room, opened the window for ventilation and closed the door to decrease the noise from the rest of the house I don’t know how the 3 concentrator tubes were connected into one cannula for her use Please correct the details about Lou's 3 concentrators -- this is the way I remember it Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org Quote Link to comment Share on other sites More sharing options...
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