Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 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 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, Just read your post about portable separator. I have been contemplating such a purchase. How many liters do you use? I am on 4 liters. Thanks, Breathe-Support , Beth wrote: > > 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 06/06 > > Draw 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 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 - 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 you Barbara (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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Sher, Thanks for the welcome back. It was really wonderful be able to plan the trip and be able to carry it off. Everything required more planning and more time but who cares as long as I can still do it?!!! Hope all is well with you my friend! 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...perhaps you were gone when I posted that we wouldn't be taking a cruise. Some of it was the damned red tape. Mostly for airplane. It became more costly/complicated so we just cancelled. HOWEVER! My daughter Lysa and I are going to take a 4 day cruise from Seattle, RT to BC and back to Seattle. Rich doesn't really want to go and Lysa wanted to do this so badly...as I did. She upgraded from our splitting the cost to a SKY SUITE on the uppermost deck with all kinds of wonderful additional perks. One being a BUTLER! Have you ever heard of such a thing?? We also get complimentary use of the gorgeous therapy pool in the Spa. Bless her loving heart. She wants to "do this for Mom"........the upgrade I mean. We are going Sept '07, Celebrity CL, on Mercury. No air flight to worry us...just carry my home fill tanks right on board. Apria will give me extra tanks for loan so I will have one for each day. (Already filled of course). So we are signed, sealed and almost delivered. /Buchart Gardens are places I've wanted to go for 25 years. Don't know why I never did...but then it wouldn't be so meaningfull as it is now!! God Bless. 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Hi , I have never seen you post before, new? Tell us a little about you. Welcome to our board....but so sorry that you are sick. 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 Sher, Oh how wonderful!! I'm sorry the other cruise got too complicated to do but this just sounds lovely! The upgrade... a butler!!! I wouldn't know what to do with myself. It just sounds spectacular and simple also as you don't have to travel far from home to get on board. That makes things so much easier! What a wonderful loving daugher you have!! God bless her! I'm so happy for you!!! 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 Hi Beth, Reading your posts about your trip. You were down in my stomping grounds. I have a grandson who is a senior at NC STATE and he works at the hockey arena. Has something to do with food service in the boxes. His mother said he was in management this year. We live about 80 miles south of Raleigh. Raleigh was one of my terminals when I was working. Small world.?.<> You said you were thinking about moving. Pictures you posted showed mountainous conditions. We live in a well populated area but we are not in the city limits. Does DUKE do transplants? I would not be elegable because of age and complications. Just thought it was interesting that you were so close. Keep us posted about your plans for the future. Grey IPF/05 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 8, 2006 Report Share Posted October 8, 2006 Hi Grey! It really is a small world, isn't it?! I really love NC and have wanted to move for years now. Put it on the back burner because of some issues/concerns with my son when he was younger but now there is no more time for "back burner"!! The pictures I've posted that show mountainous areas are from where my son lives out in the Boone area. It's gorgeous out there. He lives on a 50+ acre farm with several other young men, works two jobs and is starting back to school at Appalachia State University in January. From there I then drove to my sister's home in Hillsborough which is just west of Durham. Amy is an OB/Gyn at Duke is married with two little girls (I posted pictures of them too!) Duke does indeed do lung transplants, around 60 a year. Dr. Palmer is who I saw and he seems to be very well thought of. He only does double lung transplants, no singles and requires an intense pulmonary rehab program of all transplant candidates. He believes that being in as excellent cardio vascular condition as possible in preparation for the transplant process leads to a better survival rate. Sounds logical to me. So your grandson works at the hockey arena? As I said I was there on Wednesday night for the Hurricane home opener. My brother in law is the real hockey fan but the "Canes" games are alot of fun for almost anyone and it felt good to do something like that. It's a really nice arena, I'm sure your grandson enjoys working there. 60 miles south of Raleigh is really not far from my sister. Next time I'm down there maybe I can make side trip and pay a visit. God bless you!! 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 8, 2006 Report Share Posted October 8, 2006 - Thanks Beth, The oxygen company said we had to take the E cylinders as well so when Pete gets out of the car the flow will be constant. That is the problem now, most portables sound great but work on pulse. Also, we are finding out though the FAA stated one can use the Inomgen, AirSep and etc on board the planes the airlines companies are saying no. Now the doctor will not let Pete fly even a short distance using the airline oxygen for he claims it does not put out the 5/lpm and at a 30,000 ft cruising altitude you are still at 5,000 " . Guess no long trips for us anymore. Anyone else running into the problem with airlines? Barbara -- In Breathe-Support , Beth wrote: > > 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 06/06 > > Draw 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...
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