Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Thanks Joyce! I really did have a wonderful 10 days or so. I didn't feel very brave making the trip, it just felt good and normal. I don't know how many more road trips I'll be able to do so I savored this one. The ride down 81 (and back up but I liked it better headed south. LOL) through VA is so beautiful. The Blue Ridge Mountains are so gorgeous!! Matt is finally just beginning to resemble a mature adult. He's finally getting there. Thanks be to God! My visit to Duke went well and Dr. Palmer was realistic but quite encouraging. He reviewed all my bloodwork, scans, pft's etc etc etc. My biopsy slides had already been seen and reviewed by a couple of Duke pathologists. In any case he agrees with the diagnosis of NSIP/IPF and feels at my age and overall state of health I'm an excellent transplant candidate provided I can lose the weight that I need to lose. He also reviewed the reports from my pulmonary rehab and said he thought I'd do well in their rehab program. He warned me of it's intensity but says he feels he gets better results when patients are in the best cardio vascular shape possible. I'm determined to tough it out no matter what. He did say that I'm no where near sick enough to go on the list now (which is actually good news) He said to continue doing what I'm doing and see him in 6 months. Hopefully in 6 months I'll be living down there so that will make it easier. I've wanted to move to NC for years but put it on the back burner while my son was in school because he needed educational services that weren't available down there. I was actually finally putting moving back on the front burner when I landed my butt in the hospital last Memorial Day. I also had a great time with two of my nieces. It's so much fun being and aunt!! Beth NSIP/IPF 06/06Draw close. Hold hands. Life is short. God is good. Re: Home again Welcome Home Beth, Soooo glad that you are back on board. We missed you. Wow! What a courageous girl to drive all that way....!!! So glad that you and Matt are having a real friend to friend relationship. Sooner or later they turn into real people...... ..if we can restrain ourselves from killing them while they are teen agers. So you are considering becoming a Tar Heel, huh? Good for you. I am anxious to hear all about your Duke visit. Rest up, then get posting with all your news! Hugs, Joyce PF 1997 >> Hi everyone!> > I arrived home from NC this afternoon. Wish I could say I'm happy to be home but (with apologies to Tony ) 'I left my heart in North Carolina'. I can't wait to move> > Had a great time and had no major IPF related problems as long as I was very careful about my activity level, especially when I was up in the mountains.> > My son is wonderful and suddenly a man instead of a troubled teenager. He took very good care of me and we were able to have some solid if challanging conversations about my illness, his future, my future etc etc etc. I'm proud of him.> > Had an amazing time at my sister's and tons of fun with her daughters, my nieces and Grace ages 4 and 2. was my designated 'guage checker'. She kept a close eye on the O2 tank guages for me. I even got to go to the home opener of the NHL Stanley Cup Champion Carolina Hurricanes! > > Oh and I've been cured of wanting a portable concentrator. Definitely not the system for me as it does not produce NEARLY enough O2 to meet my oxygen needs. Ended up using it in the car only. If anyone has any questions about my experience with it, let me know.> > Had a good app't with Dr. Palmer at Duke. He was most encouraging which feels great!> > Will post some pictures tomorrow. Right now I'm off to bed> > Beth NSIP/IPF 06/06> > "Wrinkles only go where the smiles have been." > > Jimmy Buffett> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 , I'm currently on 3 liters at rest and 5 on exertion. At home I'm on continuous flow on a full size concentrator. Out and about locally I use tanks on a conserver. When I exercise I use tanks on continous flow. The problem I ran into with the portable unit is they work on what's called a "pulse" system. I was not clear on what that meant, nor what it would mean to me. With a tank on the conserver, the conserving device releases oxygen as long as I'm inhaling. (at least that's how mine works). With the portable concentrator (I was using the Lifestyle by AirSep specifically but to the best of my knowledge all the portable concentrators work this way) it releases a "pulse" of oxygen when you begin inhaling and then it does not release anymore oxygen until you begin another inhale. This would not be a problem for everyone but it was for me. In the car I had to have it turned all the way up to 5 liters per minute to maintain sats barely above 90. Any type of activity, such as out of the car to a ladies room at a rest stop on the trip down, sent my sats plummeting to the low 80's/high 70's. I ended up using tanks out of the car, a full size concentrator in the hotel and at my sister's home and using the Lifestyle only in the car. All I can say is I know now this is not the "full time" system for me. My O2 needs are just too great. But I would have always wondered if I didn't try it. That's what I would recommend to anyone contemplating a purchase. Rent or borrow a unit for at least a few days and use it under different conditions and see what works for you. Hope that helps. Beth NSIP/IPF 06/06Draw close. Hold hands. Life is short. God is good. Re: Home again> > Welcome Home Beth, > Soooo glad that you are back on board. We missed you. Wow! What a courageous girl to drive all that way....!!! So glad that you and Matt are having a real friend to friend relationship. Sooner or later they turn into real people...... ..if we can restrain ourselves from killing them while they are teen agers. > So you are considering becoming a Tar Heel, huh? Good for you. I am anxious to hear all about your Duke visit. > Rest up, then get posting with all your news!> Hugs, Joyce PF 1997> > > >> > Hi everyone!> > > > I arrived home from NC this afternoon. Wish I could say I'm happy to be home but (with apologies to Tony ) 'I left my heart in North Carolina'. I can't wait to move> > > > Had a great time and had no major IPF related problems as long as I was very careful about my activity level, especially when I was up in the mountains.> > > > My son is wonderful and suddenly a man instead of a troubled teenager. He took very good care of me and we were able to have some solid if challanging conversations about my illness, his future, my future etc etc etc. I'm proud of him.> > > > Had an amazing time at my sister's and tons of fun with her daughters, my nieces and Grace ages 4 and 2. was my designated 'guage checker'. She kept a close eye on the O2 tank guages for me. I even got to go to the home opener of the NHL Stanley Cup Champion Carolina Hurricanes! > > > > Oh and I've been cured of wanting a portable concentrator. Definitely not the system for me as it does not produce NEARLY enough O2 to meet my oxygen needs. Ended up using it in the car only. If anyone has any questions about my experience with it, let me know.> > > > Had a good app't with Dr. Palmer at Duke. He was most encouraging which feels great!> > > > Will post some pictures tomorrow. Right now I'm off to bed> > > > Beth NSIP/IPF 06/06> > > > "Wrinkles only go where the smiles have been." > > > > Jimmy Buffett> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Barbara, I was using the Lifestyle by AirSep. I know a couple of people who use the Inogen and are happy with it. However both of them have COPD and not fibrosis. The Inogen also works on the "pulsed" system like the Lifestyle but my understanding is that the Inogen has a battery that lasts 3 hours while the Lifestyle's battery only lasts 45-50 minutes. If your husband is really only expecting to use it in the car, then you should be fine. I ran into problems because my initial expectations were that I would be able to use it at least on "light exertion". That didn't work and I was glad I had a back up plan. Beth NSIP/IPF 06/06Draw close. Hold hands. Life is short. God is good. Home again> > > > Hi everyone!> > I arrived home from NC this afternoon. Wish I could say I'm happy to be home but (with apologies to Tony ) 'I left my heart in North Carolina'. I can't wait to move> > Had a great time and had no major IPF related problems as long as I was very careful about my activity level, especially when I was up in the mountains.> > My son is wonderful and suddenly a man instead of a troubled teenager. He took very good care of me and we were able to have some solid if challanging conversations about my illness, his future, my future etc etc etc. I'm proud of him.> > Had an amazing time at my sister's and tons of fun with her daughters, my nieces and Grace ages 4 and 2. was my designated 'guage checker'. She kept a close eye on the O2 tank guages for me. I even got to go to the home opener of the NHL Stanley Cup Champion Carolina Hurricanes! > > Oh and I've been cured of wanting a portable concentrator. Definitely not the system for me as it does not produce NEARLY enough O2 to meet my oxygen needs. Ended up using it in the car only. If anyone has any questions about my experience with it, let me know.> > Had a good app't with Dr. Palmer at Duke. He was most encouraging which feels great!> > Will post some pictures tomorrow. Right now I'm off to bed> > Beth NSIP/IPF 06/06> > "Wrinkles only go where the smiles have been." > > Jimmy Buffett> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Beth from Sher...thanks for the additional info. on the POC...my o2 is not as great as yours now but when it is I will have this advance info. on this POC. I'm still very happy with the home fill system. For me, it works well and I fill tanks as necessary. If I have it on cont-fl it of course doesn't last as long...but oh well. I fill it up again. God Bless. ipf 5-06 Re: Home again> > Welcome Home Beth, > Soooo glad that you are back on board. We missed you. Wow! What a courageous girl to drive all that way....!!! So glad that you and Matt are having a real friend to friend relationship. Sooner or later they turn into real people...... ..if we can restrain ourselves from killing them while they are teen agers. > So you are considering becoming a Tar Heel, huh? Good for you. I am anxious to hear all about your Duke visit. > Rest up, then get posting with all your news!> Hugs, Joyce PF 1997> > > >> > Hi everyone!> > > > I arrived home from NC this afternoon. Wish I could say I'm happy to be home but (with apologies to Tony ) 'I left my heart in North Carolina'. I can't wait to move> > > > Had a great time and had no major IPF related problems as long as I was very careful about my activity level, especially when I was up in the mountains.> > > > My son is wonderful and suddenly a man instead of a troubled teenager. He took very good care of me and we were able to have some solid if challanging conversations about my illness, his future, my future etc etc etc. I'm proud of him.> > > > Had an amazing time at my sister's and tons of fun with her daughters, my nieces and Grace ages 4 and 2. was my designated 'guage checker'. She kept a close eye on the O2 tank guages for me. I even got to go to the home opener of the NHL Stanley Cup Champion Carolina Hurricanes! > > > > Oh and I've been cured of wanting a portable concentrator. Definitely not the system for me as it does not produce NEARLY enough O2 to meet my oxygen needs. Ended up using it in the car only. If anyone has any questions about my experience with it, let me know.> > > > Had a good app't with Dr. Palmer at Duke. He was most encouraging which feels great!> > > > Will post some pictures tomorrow. Right now I'm off to bed> > > > Beth NSIP/IPF 06/06> > > > "Wrinkles only go where the smiles have been." > > > > Jimmy Buffett> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Hi, The Inogen One works everywhere. Have them give your two batteries to go with it. . On the airplane, car, boat, sitting around or whatever. It also can be plugged into any electric outlet or the cigarette lighter of the car. Good Luck, Louise/ipf/96bgl307 wrote: - Beth,What portable concentrator were you using. We are travelling from FL to Ga next week and my husband borrowed the InogenOne however, the O2 people did say that would only work in the car. Thank youBarbara (husband ipf8/05)-- In Breathe-Support , "Sher K Bauman" wrote:>> Beth from Sher...I'm glad your trip was so positive! That in itself makes us feel uplifted.> Welcome back. Hugs. ipf 5-06> Home again> > > > Hi everyone!> > I arrived home from NC this afternoon. Wish I could say I'm happy to be home but (with apologies to Tony ) 'I left my heart in North Carolina'. I can't wait to move> > Had a great time and had no major IPF related problems as long as I was very careful about my activity level, especially when I was up in the mountains.> > My son is wonderful and suddenly a man instead of a troubled teenager. He took very good care of me and we were able to have some solid if challanging conversations about my illness, his future, my future etc etc etc. I'm proud of him.> > Had an amazing time at my sister's and tons of fun with her daughters, my nieces and Grace ages 4 and 2. was my designated 'guage checker'. She kept a close eye on the O2 tank guages for me. I even got to go to the home opener of the NHL Stanley Cup Champion Carolina Hurricanes! > > Oh and I've been cured of wanting a portable concentrator. Definitely not the system for me as it does not produce NEARLY enough O2 to meet my oxygen needs. Ended up using it in the car only. If anyone has any questions about my experience with it, let me know.> > Had a good app't with Dr. Palmer at Duke. He was most encouraging which feels great!> > Will post some pictures tomorrow. Right now I'm off to bed> > Beth NSIP/IPF 06/06> > "Wrinkles only go where the smiles have been." > > Jimmy Buffett> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Hope I didn't give the impression that the POC didn't work outside the car. The LifeStyle by AirSep can plug into the car, a standard wall outlet and does have a battery just like the Inogen. The machine itself functioned fine (except for a problem I had with the power cord which necessitated Praxair overnighting me a new power cord.) What it didn't do was meet my particular oxygen needs. Hope that's a bit clearer! Beth NSIP/IPF 06/06Draw close. Hold hands. Life is short. God is good. Home again> > > > Hi everyone!> > I arrived home from NC this afternoon. Wish I could say I'm happy to be home but (with apologies to Tony ) 'I left my heart in North Carolina'. I can't wait to move> > Had a great time and had no major IPF related problems as long as I was very careful about my activity level, especially when I was up in the mountains.> > My son is wonderful and suddenly a man instead of a troubled teenager. He took very good care of me and we were able to have some solid if challanging conversations about my illness, his future, my future etc etc etc. I'm proud of him.> > Had an amazing time at my sister's and tons of fun with her daughters, my nieces and Grace ages 4 and 2. was my designated 'guage checker'. She kept a close eye on the O2 tank guages for me. I even got to go to the home opener of the NHL Stanley Cup Champion Carolina Hurricanes! > > Oh and I've been cured of wanting a portable concentrator. Definitely not the system for me as it does not produce NEARLY enough O2 to meet my oxygen needs. Ended up using it in the car only. If anyone has any questions about my experience with it, let me know.> > Had a good app't with Dr. Palmer at Duke. He was most encouraging which feels great!> > Will post some pictures tomorrow. Right now I'm off to bed> > Beth NSIP/IPF 06/06> > "Wrinkles only go where the smiles have been." > > Jimmy Buffett> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Sher, A home fill system is what I'm leaning towards now. Chad makes one that will refill a variety of size tanks. Tanks really give me the flexibility that I need and being able to refill my own will eliminate the need for O2 tank delivery. Considering my insurance only pays 50% of my O2 needs expense is a huge factor for me. I liked the concept of a POC but in practise it just doesn't work for me. And as you said, empty tank, just fill it up again! I like that!! Beth NSIP/IPF 06/06Draw close. Hold hands. Life is short. God is good. Re: Home again> > Welcome Home Beth, > Soooo glad that you are back on board. We missed you. Wow! What a courageous girl to drive all that way....!!! So glad that you and Matt are having a real friend to friend relationship. Sooner or later they turn into real people...... ..if we can restrain ourselves from killing them while they are teen agers. > So you are considering becoming a Tar Heel, huh? Good for you. I am anxious to hear all about your Duke visit. > Rest up, then get posting with all your news!> Hugs, Joyce PF 1997> > > >> > Hi everyone!> > > > I arrived home from NC this afternoon. Wish I could say I'm happy to be home but (with apologies to Tony ) 'I left my heart in North Carolina'. I can't wait to move> > > > Had a great time and had no major IPF related problems as long as I was very careful about my activity level, especially when I was up in the mountains.> > > > My son is wonderful and suddenly a man instead of a troubled teenager. He took very good care of me and we were able to have some solid if challanging conversations about my illness, his future, my future etc etc etc. I'm proud of him.> > > > Had an amazing time at my sister's and tons of fun with her daughters, my nieces and Grace ages 4 and 2. was my designated 'guage checker'. She kept a close eye on the O2 tank guages for me. I even got to go to the home opener of the NHL Stanley Cup Champion Carolina Hurricanes! > > > > Oh and I've been cured of wanting a portable concentrator. Definitely not the system for me as it does not produce NEARLY enough O2 to meet my oxygen needs. Ended up using it in the car only. If anyone has any questions about my experience with it, let me know.> > > > Had a good app't with Dr. Palmer at Duke. He was most encouraging which feels great!> > > > Will post some pictures tomorrow. Right now I'm off to bed> > > > Beth NSIP/IPF 06/06> > > > "Wrinkles only go where the smiles have been." > > > > Jimmy Buffett> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2006 Report Share Posted October 9, 2006 Beth from Sher...Since your o2 needs are greater than mine, I'm wondering if the homefill will meet your needs? I use mine on 2p most of the time and not using it all the time. Lasts a long while. If electricity should go off, I don't have any back up...concentrator is electric as well...but I don't need one right now. My tanks are always filled "just in case" and I can do well without o2 if I'm not active. That may be a consideration for you as well...no electricity. Yeah, the cruise sounds so wonderful. I can hardly believe it. I'm like you said, a butler???? I'm embarrassed to think of it. But I'll darn well enjoy it! Good luck on homefill. Sher ipf 5-06 Re: Home again> > Welcome Home Beth, > Soooo glad that you are back on board. We missed you. Wow! What a courageous girl to drive all that way....!!! So glad that you and Matt are having a real friend to friend relationship. Sooner or later they turn into real people...... ..if we can restrain ourselves from killing them while they are teen agers. > So you are considering becoming a Tar Heel, huh? Good for you. I am anxious to hear all about your Duke visit. > Rest up, then get posting with all your news!> Hugs, Joyce PF 1997> > > >> > Hi everyone!> > > > I arrived home from NC this afternoon. Wish I could say I'm happy to be home but (with apologies to Tony ) 'I left my heart in North Carolina'. I can't wait to move> > > > Had a great time and had no major IPF related problems as long as I was very careful about my activity level, especially when I was up in the mountains.> > > > My son is wonderful and suddenly a man instead of a troubled teenager. He took very good care of me and we were able to have some solid if challanging conversations about my illness, his future, my future etc etc etc. I'm proud of him.> > > > Had an amazing time at my sister's and tons of fun with her daughters, my nieces and Grace ages 4 and 2. was my designated 'guage checker'. She kept a close eye on the O2 tank guages for me. I even got to go to the home opener of the NHL Stanley Cup Champion Carolina Hurricanes! > > > > Oh and I've been cured of wanting a portable concentrator. Definitely not the system for me as it does not produce NEARLY enough O2 to meet my oxygen needs. Ended up using it in the car only. If anyone has any questions about my experience with it, let me know.> > > > Had a good app't with Dr. Palmer at Duke. He was most encouraging which feels great!> > > > Will post some pictures tomorrow. Right now I'm off to bed> > > > Beth NSIP/IPF 06/06> > > > "Wrinkles only go where the smiles have been." > > > > Jimmy Buffett> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2006 Report Share Posted October 10, 2006 Dear Sher, I think that maybe a concentrator that has the capability of filling tanks might work for me. When I'm at home, I'm using the concentrator at 3 LPM. I use tanks when I'm out of the house and/or exercising. Currently Praxair delivers tanks to me every week which is very expensive, even with my insurance paying half. If I had the ability to refill my own tanks it would cut out that expense. Even with the cost of purchasing the system I'm considering from Chad, eliminating the cost of refilled tanks would pay for the system in less than 4 months. I would have to purchase extra tanks to keep on hand filled but even with that it's still more cost effective than what I'm doing now. Like you I'm dependant on electricity for my oxygen from the concentrator. If the power goes out I have a large "M" tank for backup. This would last me 10-12 hours at 3LPM. That is something I would continue to rent regardless of what system I eventually purchase. I am also wondering whether a generator might not be a bad idea at some point, just for peace of mind. This is all in theory right now anyway as the budget is stretched as tight as it will go. We'll see what happens, there's no huge rush. Trying to think it through as thoroughly as possible. Thanks for the help, I appreciate it!!! Beth NSIP/IPF 06/06Draw close. Hold hands. Life is short. God is good. Re: Home again> > Welcome Home Beth, > Soooo glad that you are back on board. We missed you. Wow! What a courageous girl to drive all that way....!!! So glad that you and Matt are having a real friend to friend relationship. Sooner or later they turn into real people...... ..if we can restrain ourselves from killing them while they are teen agers. > So you are considering becoming a Tar Heel, huh? Good for you. I am anxious to hear all about your Duke visit. > Rest up, then get posting with all your news!> Hugs, Joyce PF 1997> > > >> > Hi everyone!> > > > I arrived home from NC this afternoon. Wish I could say I'm happy to be home but (with apologies to Tony ) 'I left my heart in North Carolina'. I can't wait to move> > > > Had a great time and had no major IPF related problems as long as I was very careful about my activity level, especially when I was up in the mountains.> > > > My son is wonderful and suddenly a man instead of a troubled teenager. He took very good care of me and we were able to have some solid if challanging conversations about my illness, his future, my future etc etc etc. I'm proud of him.> > > > Had an amazing time at my sister's and tons of fun with her daughters, my nieces and Grace ages 4 and 2. was my designated 'guage checker'. She kept a close eye on the O2 tank guages for me. I even got to go to the home opener of the NHL Stanley Cup Champion Carolina Hurricanes! > > > > Oh and I've been cured of wanting a portable concentrator. Definitely not the system for me as it does not produce NEARLY enough O2 to meet my oxygen needs. Ended up using it in the car only. If anyone has any questions about my experience with it, let me know.> > > > Had a good app't with Dr. Palmer at Duke. He was most encouraging which feels great!> > > > Will post some pictures tomorrow. Right now I'm off to bed> > > > Beth NSIP/IPF 06/06> > > > "Wrinkles only go where the smiles have been." > > > > Jimmy Buffett> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2006 Report Share Posted October 10, 2006 Beth...there is no doubt you will 'figure-it-out' and something will reveal to you the best way to go. My o2 needs are fairly small right now and even so I though I would scream before making a decision. So much info. to absorb. Have a good day. Sher Re: Home again> > Welcome Home Beth, > Soooo glad that you are back on board. We missed you. Wow! What a courageous girl to drive all that way....!!! So glad that you and Matt are having a real friend to friend relationship. Sooner or later they turn into real people...... ..if we can restrain ourselves from killing them while they are teen agers. > So you are considering becoming a Tar Heel, huh? Good for you. I am anxious to hear all about your Duke visit. > Rest up, then get posting with all your news!> Hugs, Joyce PF 1997> > > >> > Hi everyone!> > > > I arrived home from NC this afternoon. Wish I could say I'm happy to be home but (with apologies to Tony ) 'I left my heart in North Carolina'. I can't wait to move> > > > Had a great time and had no major IPF related problems as long as I was very careful about my activity level, especially when I was up in the mountains.> > > > My son is wonderful and suddenly a man instead of a troubled teenager. He took very good care of me and we were able to have some solid if challanging conversations about my illness, his future, my future etc etc etc. I'm proud of him.> > > > Had an amazing time at my sister's and tons of fun with her daughters, my nieces and Grace ages 4 and 2. was my designated 'guage checker'. She kept a close eye on the O2 tank guages for me. I even got to go to the home opener of the NHL Stanley Cup Champion Carolina Hurricanes! > > > > Oh and I've been cured of wanting a portable concentrator. Definitely not the system for me as it does not produce NEARLY enough O2 to meet my oxygen needs. Ended up using it in the car only. If anyone has any questions about my experience with it, let me know.> > > > Had a good app't with Dr. Palmer at Duke. He was most encouraging which feels great!> > > > Will post some pictures tomorrow. Right now I'm off to bed> > > > Beth NSIP/IPF 06/06> > > > "Wrinkles only go where the smiles have been." > > > > Jimmy Buffett> >> Quote Link to comment Share on other sites More sharing options...
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