Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 Last night, or rather very early this morning, when no one else was on here posting, I went all the way back to the very first post and starting reading. I think I read all the way through the first year. I will eventually read it all. It sort of makes me feel like I know everyone a little bit better. Thanks for being here. Tina IPF/April 07/Ohio > > Just re-read post #115 Dec 27 2005 my first post with this small > group back then. We sure have grown in two years. > How have thing changed with me? was on 4 LPM now on 8.5 LPM. Drops > into the low 80's at that level (NOT GOOD) The home fill system only > goes to 5 pulse so am looking into liquid o2. Insurance doesn't want > to give me the extra tank I want. > Have not been in Hospital in two years YA. Still taking lots of > pills to keep me going. > Having a PFT on the 3rd. I expect to see lower numbers. The SOB is > really slowing me down. > Some of the group used to call me the the " answer man " but now I do > more lurking than answering. Bruce is a lot better at it than I was. > > Saw my first grand child born, Hope to see his first birthday. > > This is a great group!!! > > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH > 3/06, ILL yo 59 > > > Never miss a thing. Make Yahoo your homepage. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 P. You were the first answer man I met here and you set the standards very high . I'm sorry that the SOB is so troubling now. Take care of yourself and give that grand baby big hugs. Happy New Year. Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley wrote: Just re-read post #115 Dec 27 2005 my first post with this small group back then. We sure have grown in two years. How have thing changed with me? was on 4 LPM now on 8.5 LPM. Drops into the low 80's at that level (NOT GOOD) The home fill system only goes to 5 pulse so am looking into liquid o2. Insurance doesn't want to give me the extra tank I want. Have not been in Hospital in two years YA. Still taking lots of pills to keep me going. Having a PFT on the 3rd. I expect to see lower numbers. The SOB is really slowing me down. Some of the group used to call me the the "answer man" but now I do more lurking than answering. Bruce is a lot better at it than I was. Saw my first grand child born, Hope to see his first birthday. This is a great group!!! P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 Never miss a thing. Make Yahoo your homepage. No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.11/1200 - Release Date: 12/27/2007 1:34 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 P. You were the first answer man I met here and you set the standards very high . I'm sorry that the SOB is so troubling now. Take care of yourself and give that grand baby big hugs. Happy New Year. Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley wrote: Just re-read post #115 Dec 27 2005 my first post with this small group back then. We sure have grown in two years. How have thing changed with me? was on 4 LPM now on 8.5 LPM. Drops into the low 80's at that level (NOT GOOD) The home fill system only goes to 5 pulse so am looking into liquid o2. Insurance doesn't want to give me the extra tank I want. Have not been in Hospital in two years YA. Still taking lots of pills to keep me going. Having a PFT on the 3rd. I expect to see lower numbers. The SOB is really slowing me down. Some of the group used to call me the the "answer man" but now I do more lurking than answering. Bruce is a lot better at it than I was. Saw my first grand child born, Hope to see his first birthday. This is a great group!!! P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 Never miss a thing. Make Yahoo your homepage. No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.11/1200 - Release Date: 12/27/2007 1:34 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 Now listen up good n' proper my good man...we expect to see an END to LURKING behaviour....we want to hear how you're doing P....you're a GOLD CARD member of this Board...we want to help you get to your grandchild's 1st birthday and beyond! Regards, in Oz >> Just re-read post #115 Dec 27 2005 my first post with this small group back then. We sure have grown in two years.> How have thing changed with me? was on 4 LPM now on 8.5 LPM. Drops into the low 80's at that level (NOT GOOD) The home fill system only goes to 5 pulse so am looking into liquid o2. Insurance doesn't want to give me the extra tank I want. > Have not been in Hospital in two years YA. Still taking lots of pills to keep me going. > Having a PFT on the 3rd. I expect to see lower numbers. The SOB is really slowing me down. > Some of the group used to call me the the "answer man" but now I do more lurking than answering. Bruce is a lot better at it than I was. > > Saw my first grand child born, Hope to see his first birthday.> > This is a great group!!!> > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59> > ---------------------------------> Never miss a thing. Make Yahoo your homepage.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 , You were #115 and I was #300. It was so good to find all of you here back then. I think you, Peggy, Leanne and me may be the only ones left. Grey still posts sometimes. I miss him. I know that he doesn't feel good, though. I am at 8L to 10L too. I had to fight like a dog to get the 02 set up that I needed. I wanted liquid portable with tanks for back up. Oh, they could not do that! So, I began the fight (get so tired of it all). Right now, I am going to pursue going to liquid for home use, too. I still need back up tanks. Even if you have a liquid reservoir for your car, the inconvenience of going back to the car when you are as bad as we are is just too much. This way for doc visits, I take the Companion1000T and my husband (or whomever goes with me) takes the E tank. That way when I run out of liquid, I can switch over to the tank right then. I certainly could not sit there with no 02 while someone got to the parking garage, found the car, refilled and got back. Gwenn uses two liquid tanks so that would work. My car is not big enough for a reservoir however. So, I have to do tanks for back up. Gets more and more complicated doesn't it, . But, we have made it this far and there is still fight left in this old gal. You, well you have to stick around and enjoy that sweet baby and your new porch. As Leanne would say....Love you, man. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Just re-read post #115 Dec 27 2005 my first post with this small group back then. We sure have grown in two years.> How have thing changed with me? was on 4 LPM now on 8.5 LPM. Drops into the low 80's at that level (NOT GOOD) The home fill system only goes to 5 pulse so am looking into liquid o2. Insurance doesn't want to give me the extra tank I want. > Have not been in Hospital in two years YA. Still taking lots of pills to keep me going. > Having a PFT on the 3rd. I expect to see lower numbers. The SOB is really slowing me down. > Some of the group used to call me the the "answer man" but now I do more lurking than answering. Bruce is a lot better at it than I was. > > Saw my first grand child born, Hope to see his first birthday.> > This is a great group!!!> > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59> > ---------------------------------> Never miss a thing. Make Yahoo your homepage.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Oh you guys make me feel like such a rookie and at the same time you're such inspirations. I'm in the process of switching to liquid as well. Actually, I'm switching providers too, to the same people Gwynne uses. While they aren't national, they are very nice and accomodating. For instance, Apria, even though the largest, only has two Sequel/Eclipse/Evergo type travel concentrators, they have four. Apria provides one size liquid reservoir whether home or travel-75 pounds. The new company has as small as 25 pounds and as large as 144 pounds. Although, my car is small the 25 or 50 will fit in it. Also, to conserve the liquid on travel, they will provide a concentrator to be taken with me and used for hotel rooms or homes or whatever. The only negative is that they aren't nationwide so if I took a long trip I would probably have to pay for any refills of the liquid reservoir. yes, Gwynne carries the two Companion1000T's so inconspicuously especially considering her glasses that barely let you know she's on oxygen. I'm going to do as you and try to get good backups to the portable tanks, although obviously I'm far from your liter flow. But, I figure now is the time to start toward systems of preparedness. The other thing I've strongly considered if I have to is purchasing a second portable myself. Not like I can afford it, but its probably more important to my lifestyle than many of the other items I spend money on (outside of the absolute necessities) so next time I get myself a present that might be it. Depending on pricing I might even go with a reconditioned model as backup rather than a new one. Maybe thats my present to myself next Christmas. Or maybe by the time i really need it I'll get as persuasive as Gwynne....no way. It does get complicated, but sounds like you've worked it out quite well and thats what we all have to do. I didn't see that happening where I was so I am making a change. Its really sort of funny, that Apria is so huge here and, don't get me wrong, on oxygen supply I've gotten excellent service from them, but to work out alternatives is difficult and for travel it all goes through one person and he needs four weeks notice and has so little available to help you. Meanwhile I talk to customer service in the new company and they are giving all sorts of solutions while at the same time making their one negative, only being local, clear. My experience with this Apria branch was the customer service department is great, but if you were referred to their respiratory therapist or buyer or travel guy you might or might not get your call returned sometime. Actually, I've had the customer service people get angry and walk through the office to the others and tell them to take the call. > > > > Just re-read post #115 Dec 27 2005 my first post with this small group > back then. We sure have grown in two years. > > How have thing changed with me? was on 4 LPM now on 8.5 LPM. Drops > into the low 80's at that level (NOT GOOD) The home fill system only > goes to 5 pulse so am looking into liquid o2. Insurance doesn't want to > give me the extra tank I want. > > Have not been in Hospital in two years YA. Still taking lots of pills > to keep me going. > > Having a PFT on the 3rd. I expect to see lower numbers. The SOB is > really slowing me down. > > Some of the group used to call me the the " answer man " but now I do > more lurking than answering. Bruce is a lot better at it than I was. > > > > Saw my first grand child born, Hope to see his first birthday. > > > > This is a great group!!! > > > > > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo > 59 > > > > --------------------------------- > > Never miss a thing. Make Yahoo your homepage. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Peggy, I use a concentrator now, but want to go to liquid. I would have 4 tanks in the garage. We are going to make a hole through the wall for the tubing. I have a Companion 1000T liquid portable which lasts about 2 hours at 8L. It goes up to 15L. Sometimes I have to have 10L. It should come with a cart because they are pretty heavy to carry. I am liquid portable filler-up impaired. It makes me so nervous, I hate to do it and sometimes I mess up. But, everyone else does great. Just have the delivery guy really go over everything with you. Just explain that you are a dumb blonde and need a lot of instruction. They bring me lots of tanks for back up. The E tank lasts one hour. I hate those things. I think with Medicare they are much better at giving you all that you need. God's blessings to you, Peggy. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > >> > Just re-read post #115 Dec 27 2005 my first post with this small > group back then. We sure have grown in two years.> > How have thing changed with me? was on 4 LPM now on 8.5 LPM. Drops > into the low 80's at that level (NOT GOOD) The home fill system only > goes to 5 pulse so am looking into liquid o2. Insurance doesn't want > to give me the extra tank I want.> > Have not been in Hospital in two years YA. Still taking lots of > pills to keep me going.> > Having a PFT on the 3rd. I expect to see lower numbers. The SOB is > really slowing me down.> > Some of the group used to call me the the "answer man" but now I > do more lurking than answering. Bruce is a lot better at it than I was.> >> > Saw my first grand child born, Hope to see his first birthday.> >> > This is a great group!!!> >> >> > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, > ILL yo 59> >> > ---------------------------------> > Never miss a thing. Make Yahoo your homepage.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Peggy, I use a concentrator now, but want to go to liquid. I would have 4 tanks in the garage. We are going to make a hole through the wall for the tubing. I have a Companion 1000T liquid portable which lasts about 2 hours at 8L. It goes up to 15L. Sometimes I have to have 10L. It should come with a cart because they are pretty heavy to carry. I am liquid portable filler-up impaired. It makes me so nervous, I hate to do it and sometimes I mess up. But, everyone else does great. Just have the delivery guy really go over everything with you. Just explain that you are a dumb blonde and need a lot of instruction. They bring me lots of tanks for back up. The E tank lasts one hour. I hate those things. I think with Medicare they are much better at giving you all that you need. God's blessings to you, Peggy. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > >> > Just re-read post #115 Dec 27 2005 my first post with this small > group back then. We sure have grown in two years.> > How have thing changed with me? was on 4 LPM now on 8.5 LPM. Drops > into the low 80's at that level (NOT GOOD) The home fill system only > goes to 5 pulse so am looking into liquid o2. Insurance doesn't want > to give me the extra tank I want.> > Have not been in Hospital in two years YA. Still taking lots of > pills to keep me going.> > Having a PFT on the 3rd. I expect to see lower numbers. The SOB is > really slowing me down.> > Some of the group used to call me the the "answer man" but now I > do more lurking than answering. Bruce is a lot better at it than I was.> >> > Saw my first grand child born, Hope to see his first birthday.> >> > This is a great group!!!> >> >> > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, > ILL yo 59> >> > ---------------------------------> > Never miss a thing. Make Yahoo your homepage.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Oh, you think you're filler up impaired, I'm so bad at anything like that. I'm going to be real blonde and I can assure you I'm not a natural blonde. Thats another thing. I know enough now to insist on full training including what to do when something breaks or goes wrong. When my current compressed tanks and concentrator were delivered I wasn't warned at all about batteries or told anything about the possibility of needing to replace o-rings. Also a reason I want to go to liquid while I don't need the liter flows you do. I want to get lots of practice refilling while if I do have a freeze I still can go sit on the sofa and wait it out. > > > > > > Just re-read post #115 Dec 27 2005 my first post with this small > > group back then. We sure have grown in two years. > > > How have thing changed with me? was on 4 LPM now on 8.5 LPM. Drops > > into the low 80's at that level (NOT GOOD) The home fill system only > > goes to 5 pulse so am looking into liquid o2. Insurance doesn't want > > to give me the extra tank I want. > > > Have not been in Hospital in two years YA. Still taking lots of > > pills to keep me going. > > > Having a PFT on the 3rd. I expect to see lower numbers. The SOB is > > really slowing me down. > > > Some of the group used to call me the the " answer man " but now I > > do more lurking than answering. Bruce is a lot better at it than I > was. > > > > > > Saw my first grand child born, Hope to see his first birthday. > > > > > > This is a great group!!! > > > > > > > > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, > > ILL yo 59 > > > > > > --------------------------------- > > > Never miss a thing. Make Yahoo your homepage. > > > > > > Quote Link to comment Share on other sites More sharing options...
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