Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Walt............I can surely identify with not wanting to go the O2 route. What did it for me was finding out what low O2 levels do to other organs, specifically, my heart. Imagine.....your heart has to beat harder and harder to pump oxygen that ain't there. I have enough problems without visiting heart attack country. When I finally got O2 I wouldn't leave the house for almost a month.......that was a year ago. I hate it !! It is a huge pain in the butt, but the alternative really sucks. Good Luck jim IPF 05 alaska From: Sher Bauman <bofuswbcable (DOT) net>Subject: Re: (unknown)To: Breathe-Support@ yahoogroups. comDate: Thursday, July 31, 2008, 9:25 AM Hello Walt... I want to welcome you to the board and express my sadness that you found us, which means you have what we have! This is the best place you could be though. There is always someone to answer questions and we a supportive group with each other. Those 13 years of breathing chemicals must have been the likely cause of your IPF. Many of us don't have any idea how we got IPF. Find another Dr to see, preferably a pulmonologist and follow up with s/he. There will be breathing tests that we all take periodically and perhaps a CAT scan. None of them painful. If it's harder and harder to do everyday things, changes are you may need oxygen. Without enough O2 other organs are damaged as well. None of us progress the same or in the same time graph...but a Dr will help you with your questions and you will get support and help here too. Where do you live? (I'm in Oregon) and how old are you? Welcome Walt, I'll watch for your posts to get to know you better. MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! (unknown) Hello all New and first post. So not sure what I am doing, I have read some of the postings and can say it’s nice to listen to what others have to say that “know” My family is supportive but I don’t think they truly understand. I was diagnose in 06 and had the bronchoscopy and then open biopsy They gave am a list of things that is wrong and IPF being one. The doctors want me to have a CT every 6 months to check progress. I worked in a chemical plant for 13 years and had Nemours exospheres and a few hospital trips to all kinds of chemicals, Chlorine, asbestos and Hydrochloric and sulfuric acid to name just a few. I read that these can be a cause but when I talked to the Doctors about this it’s like they don’t want to here it. I have not been back to the doctor since 06. It’s harder and harder working and to do the everyday things. I just DON”T want to go back to the doctor (dog and pony show) Is there a chart or something I could look at to see where I am at or what to expect? I want to distinguish between getting old and? Thanks for listing Walt "Dont be afraid of dying. Be afraid of the unlived life" Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Hello Wow thank you. You wouldn't believe how many people i told about my reluctance to start using O2 thought I was crazy. Not that I'm not but at least not for that reason. Again Thanks Walt Our care should not be to have lived long as to have lived enough. From: Sher Bauman <bofuswbcable (DOT) net>Subject: Re: (unknown)To: Breathe-Support@ yahoogroups. comDate: Thursday, July 31, 2008, 9:25 AM Hello Walt... I want to welcome you to the board and express my sadness that you found us, which means you have what we have! This is the best place you could be though. There is always someone to answer questions and we a supportive group with each other. Those 13 years of breathing chemicals must have been the likely cause of your IPF. Many of us don't have any idea how we got IPF. Find another Dr to see, preferably a pulmonologist and follow up with s/he. There will be breathing tests that we all take periodically and perhaps a CAT scan. None of them painful. If it's harder and harder to do everyday things, changes are you may need oxygen. Without enough O2 other organs are damaged as well. None of us progress the same or in the same time graph...but a Dr will help you with your questions and you will get support and help here too. Where do you live? (I'm in Oregon) and how old are you? Welcome Walt, I'll watch for your posts to get to know you better. MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! (unknown) Hello all New and first post. So not sure what I am doing, I have read some of the postings and can say it’s nice to listen to what others have to say that “know” My family is supportive but I don’t think they truly understand. I was diagnose in 06 and had the bronchoscopy and then open biopsy They gave am a list of things that is wrong and IPF being one. The doctors want me to have a CT every 6 months to check progress. I worked in a chemical plant for 13 years and had Nemours exospheres and a few hospital trips to all kinds of chemicals, Chlorine, asbestos and Hydrochloric and sulfuric acid to name just a few. I read that these can be a cause but when I talked to the Doctors about this it’s like they don’t want to here it. I have not been back to the doctor since 06. It’s harder and harder working and to do the everyday things. I just DON”T want to go back to the doctor (dog and pony show) Is there a chart or something I could look at to see where I am at or what to expect? I want to distinguish between getting old and? Thanks for listing Walt "Dont be afraid of dying. Be afraid of the unlived life" Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 and Walt,I didn't want home O2 until I was forced to get it.Then, I couldn't believe the difference. I had more energy than I had had for at least 2 years. I almost felt like a normal person again. I wished I had started it much earlier.I go out of the house all the time. My flow rate is 5 litre/minute, which is high. I have 2 liquid oxygen portable packs, each of which lasts for 2 and 1/2 hours at my flow rate. So I can go out for 5 hours at a time. I also have some compressed O2 cylinders as backups, so if I want to go out somewhere for longer I just take those too.Two weeks ago I went camping with my wife and kids for 5 days in a tent. I put the liquid oxygen base station in the back of my minivan, and used a 25 foot tube for getting around the campsite. The tube reached into the tent so I could sleep with it hooked up. The oxygen company came to the campsite during the week to refill the base station. I took the portable liquid oxygen tanks to the beach each day. No problem.For me, the O2 is a real blessing, and has allowed me to resume a huge amount of a normal life.Hope this is of interest.Cameron (unknown)Hello allNew and first post. So not sure what I am doing, I have read some of the postings and can say it’s nice to listen to what others have to say that “know” My family is supportive but I don’t think they truly understand. I was diagnose in 06 and had the bronchoscopy and then open biopsy They gave am a list of things that is wrong and IPF being one. The doctors want me to have a CT every 6 months to check progress. I worked in a chemical plant for 13 years and had Nemours exospheres and a few hospital trips to all kinds of chemicals, Chlorine, asbestos and Hydrochloric and sulfuric acid to name just a few. I read that these can be a cause but when I talked to the Doctors about this it’s like they don’t want to here it. I have not been back to the doctor since 06. It’s harder and harder working and to do the everyday things. I just DON”T want to go back to the doctor (dog and pony show) Is there a chart or something I could look at to see where I am at or what to expect? I want to distinguish between getting old and?Thanks for listingWalt"Dont be afraid of dying. Be afraid of the unlived life" Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Cameron Thank you My sats seem to (for now) stay up during the day when at the doc's office they were 94% but there is some question that them might be dipping at night. I am not sleeping more then about 3 to 4 hours and tired all the time the latest thing is I ache at first I was thinking I was getting the flu or something but nothing but Joint pain and ache so a friend said I need to have my O2 sats check at night The last PFT I had was in 06 and my lung capacity was about 48%. I know that the O2 thing is something I am going to have to get over. Thank you Walt Our care should not be to have lived long as to have lived enough. From: Sher Bauman <bofuswbcable (DOT) net>Subject: Re: (unknown)To: Breathe-Support@ yahoogroups. comDate: Thursday, July 31, 2008, 9:25 AM Hello Walt... I want to welcome you to the board and express my sadness that you found us, which means you have what we have! This is the best place you could be though. There is always someone to answer questions and we a supportive group with each other. Those 13 years of breathing chemicals must have been the likely cause of your IPF. Many of us don't have any idea how we got IPF. Find another Dr to see, preferably a pulmonologist and follow up with s/he. There will be breathing tests that we all take periodically and perhaps a CAT scan. None of them painful. If it's harder and harder to do everyday things, changes are you may need oxygen. Without enough O2 other organs are damaged as well. None of us progress the same or in the same time graph...but a Dr will help you with your questions and you will get support and help here too. Where do you live? (I'm in Oregon) and how old are you? Welcome Walt, I'll watch for your posts to get to know you better. MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! (unknown) Hello all New and first post. So not sure what I am doing, I have read some of the postings and can say it’s nice to listen to what others have to say that “know” My family is supportive but I don’t think they truly understand. I was diagnose in 06 and had the bronchoscopy and then open biopsy They gave am a list of things that is wrong and IPF being one. The doctors want me to have a CT every 6 months to check progress. I worked in a chemical plant for 13 years and had Nemours exospheres and a few hospital trips to all kinds of chemicals, Chlorine, asbestos and Hydrochloric and sulfuric acid to name just a few. I read that these can be a cause but when I talked to the Doctors about this it’s like they don’t want to here it. I have not been back to the doctor since 06. It’s harder and harder working and to do the everyday things. I just DON”T want to go back to the doctor (dog and pony show) Is there a chart or something I could look at to see where I am at or what to expect? I want to distinguish between getting old and? Thanks for listing Walt "Dont be afraid of dying. Be afraid of the unlived life" Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Walt/ For me I used oxygen initially for the simple reason that I want my lungs to be the first thing to go, not my kidneys, not my heart. I don't like having a lung disease but I just don't want more problems piled on top of it. So, I use it to protect my other organs. Now, I realize that at this point I'd be able to enjoy very little without oxygen. If I just went shopping without it my sats would be in the 70's or lower. So, in addition to damaging myself I'd soon find myself not going out at all or doing so in misery. With oxygen, I live as near normally as possible. Think of it as like carrying a huge purse or a briefcase. As to appearance, well, yes...I don't like looking old or looking like someone who needs oxygen. But, I like pain less. And, I have to live with the reality of the appearance. On the other hand, I get assisted everywhere I need it, treated nicer than ever, get great parking. Its also led to some great conversations and meeting some great people, believe it or not. While my friends are aware and understand, I'm fortunate that they treat me just like me, not like a person with a terminal disease. Even some humor if you let it come. My ex-wife has been battling tennis elbow so when and I were doing things, I actually felt like the healthy one of the two of us. At its worse, I had to cut her food in the restaurant. She was embarrassed. No reason to be. We laughed about being a pitiful twosome. But I've helped other friends with things too. Oxygen will change your life some. However, it will be minimal if you have a positive attitude toward it. One person here just went camping. I've traveled loads with it. Yes, I get tired easier. But not nearly as tired on it as I would without it. > > From: Sher Bauman bofuswbcable (DOT) net> > Subject: Re: (unknown) > To: Breathe-Support@ yahoogroups. com > Date: Thursday, July 31, 2008, 9:25 AM > > > > > > Hello Walt... I want to welcome you to the board and express my sadness that you found us, which means you have what we have! > This is the best place you could be though. There is always someone to answer questions and we a supportive group with each other. > Those 13 years of breathing chemicals must have been the likely cause of your IPF. Many of us don't have any idea how we got IPF. > Find another Dr to see, preferably a pulmonologist and follow up with s/he. There will be breathing tests that we all take periodically and perhaps a CAT scan. None of them painful. > If it's harder and harder to do everyday things, changes are you may need oxygen. Without enough O2 other organs are damaged as well. > None of us progress the same or in the same time graph...but a Dr will help you with your questions and you will get support and help here too. > Where do you live? (I'm in Oregon) and how old are you? > Welcome Walt, I'll watch for your posts to get to know you better. > > MamaSher, age 69. IPF 3-06, OR. > Nasturtiums > Don't fret about tomorrow, God is already there! > > > (unknown) > > > > > > > > > Hello all > New and first post. So not sure what I am doing, I have read some of the postings and can say it's nice to listen to what others have to say that " know " My family is supportive but I don't think they truly understand. I was diagnose in 06 and had the bronchoscopy and then open biopsy They gave am a list of things that is wrong and IPF being one. The doctors want me to have a CT every 6 months to check progress. I worked in a chemical plant for 13 years and had Nemours exospheres and a few hospital trips to all kinds of chemicals, Chlorine, asbestos and Hydrochloric and sulfuric acid to name just a few. I read that these can be a cause but when I talked to the Doctors about this it's like they don't want to here it. I have not been back to the doctor since 06. It's harder and harder working and to do the everyday things. I just DON " T want to go back to the doctor (dog and pony show) Is there a chart or something I could look at to see > where I am at or what to expect? I want to distinguish between getting old and? > Thanks for listing > Walt > > > > > > > " Dont be afraid of dying. Be afraid of the unlived life " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Hi Walt! I’m fairly new here too. I’ve been on O2 24x7 since January of this year. Believe it or not, you get used to it fairly quickly and at times don’t even know the “hose” is there. It has made a big difference for me, especially having the 02 at night while I sleep. I get a much better nights sleep, and have from the very first night that I was on it. I recently had a sleep study and they found that I didn’t have any issues while sleeping – no sleep apnea! My little god-son (check out my album – Steve…aka Knip) loves sitting in my lap and playing with Uncle Steve’s “nose hose”… Like you, I thought I would be very self-conscious at first, but I really got over it quickly. It makes a big difference, and as the others have said, it makes a big difference for your heart. Steve …aka Knip Dx 9/07 confirmed via VATS 12/07 57 NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Cameron, Wow! you are the 02 poster boy of the day. I can't imagine camping with 02. But, then I am not a camping kind of girl. Plush carpets, air conditioning and big screen t.v. for me. This shows that our lifestyle does not have to change. Some accomadations must be made, but we can still enjoy life. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> > From: Sher Bauman bofuswbcable (DOT) net>> Subject: Re: (unknown)> To: Breathe-Support@ yahoogroups. com> Date: Thursday, July 31, 2008, 9:25 AM> > > Hello Walt... I want to welcome you to the board and express my sadness that you found us, which means you have what we have!> This is the best place you could be though. There is always someone to answer questions and we a supportive group with each other.> Those 13 years of breathing chemicals must have been the likely cause of your IPF. Many of us don't have any idea how we got IPF.> Find another Dr to see, preferably a pulmonologist and follow up with s/he. There will be breathing tests that we all take periodically and perhaps a CAT scan. None of them painful.> If it's harder and harder to do everyday things, changes are you may need oxygen. Without enough O2 other organs are damaged as well.> None of us progress the same or in the same time graph...but a Dr will help you with your questions and you will get support and help here too.> Where do you live? (I'm in Oregon) and how old are you?> Welcome Walt, I'll watch for your posts to get to know you better.> > MamaSher, age 69. IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > (unknown)> > Hello all> New and first post. So not sure what I am doing, I have read some of the postings and can say it's nice to listen to what others have to say that "know" My family is supportive but I don't think they truly understand. I was diagnose in 06 and had the bronchoscopy and then open biopsy They gave am a list of things that is wrong and IPF being one. The doctors want me to have a CT every 6 months to check progress. I worked in a chemical plant for 13 years and had Nemours exospheres and a few hospital trips to all kinds of chemicals, Chlorine, asbestos and Hydrochloric and sulfuric acid to name just a few. I read that these can be a cause but when I talked to the Doctors about this it's like they don't want to here it. I have not been back to the doctor since 06. It's harder and harder working and to do the everyday things. I just DON"T want to go back to the doctor (dog and pony show) Is there a chart or something I could look at to see> where I am at or what to expect? I want to distinguish between getting old and?> Thanks for listing> Walt> > "Dont be afraid of dying. Be afraid of the unlived life"> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2008 Report Share Posted August 1, 2008 Walt... this post may be one of many but you can buy an oximeter at www.portablenebs.com for $65. I and others on the board have one and they work great. They are also FDA approved so there is no need to pay more. MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! (unknown) Hello all New and first post. So not sure what I am doing, I have read some of the postings and can say it’s nice to listen to what others have to say that “know” My family is supportive but I don’t think they truly understand. I was diagnose in 06 and had the bronchoscopy and then open biopsy They gave am a list of things that is wrong and IPF being one. The doctors want me to have a CT every 6 months to check progress. I worked in a chemical plant for 13 years and had Nemours exospheres and a few hospital trips to all kinds of chemicals, Chlorine, asbestos and Hydrochloric and sulfuric acid to name just a few. I read that these can be a cause but when I talked to the Doctors about this it’s like they don’t want to here it. I have not been back to the doctor since 06. It’s harder and harder working and to do the everyday things. I just DON”T want to go back to the doctor (dog and pony show) Is there a chart or something I could look at to see where I am at or what to expect? I want to distinguish between getting old and? Thanks for listing Walt "Dont be afraid of dying. Be afraid of the unlived life" Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2008 Report Share Posted August 1, 2008 Thank You Our care should not be to have lived long as to have lived enough. From: Sher Bauman <bofuswbcable (DOT) net>Subject: Re: (unknown)To: Breathe-Support@ yahoogroups. comDate: Thursday, July 31, 2008, 9:25 AM Hello Walt... I want to welcome you to the board and express my sadness that you found us, which means you have what we have! This is the best place you could be though. There is always someone to answer questions and we a supportive group with each other. Those 13 years of breathing chemicals must have been the likely cause of your IPF. Many of us don't have any idea how we got IPF. Find another Dr to see, preferably a pulmonologist and follow up with s/he. There will be breathing tests that we all take periodically and perhaps a CAT scan. None of them painful. If it's harder and harder to do everyday things, changes are you may need oxygen. Without enough O2 other organs are damaged as well. None of us progress the same or in the same time graph...but a Dr will help you with your questions and you will get support and help here too. Where do you live? (I'm in Oregon) and how old are you? Welcome Walt, I'll watch for your posts to get to know you better. MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! (unknown) Hello all New and first post. So not sure what I am doing, I have read some of the postings and can say it’s nice to listen to what others have to say that “know” My family is supportive but I don’t think they truly understand. I was diagnose in 06 and had the bronchoscopy and then open biopsy They gave am a list of things that is wrong and IPF being one. The doctors want me to have a CT every 6 months to check progress. I worked in a chemical plant for 13 years and had Nemours exospheres and a few hospital trips to all kinds of chemicals, Chlorine, asbestos and Hydrochloric and sulfuric acid to name just a few. I read that these can be a cause but when I talked to the Doctors about this it’s like they don’t want to here it. I have not been back to the doctor since 06. It’s harder and harder working and to do the everyday things. I just DON”T want to go back to the doctor (dog and pony show) Is there a chart or something I could look at to see where I am at or what to expect? I want to distinguish between getting old and? Thanks for listing Walt "Dont be afraid of dying. Be afraid of the unlived life" Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 I am not A big hot weather fan that is why I live on a island 30 miles from the Canada. I am however moving to Mexico after My son graduates (3 years). I bought a place this summer on the beach in San Felipe Mexico and going to take my boat and move!! so any of you who want to come by for a cold one and sit on the beach or go fishing let me know and I will send you the directions. Walt Walt, Whidbey Island Wa IPF, NSIP, UIP, DIP 10/06 Life may not be the party we hoped for, but while we are here we might as well dance Subject: WaltTo: Breathe-Support Date: Friday, August 8, 2008, 12:10 PM I'll get inspired by the pictures but I can assure you I don't care howawesome a place is if it's 112 on the day I'm there, I'm not going to beinspired.... lolEven the tv anchors admitted how ridiculous it sounded when they werediscussing us having a cold front for a couple of days and finallyhaving a day it didn't hit 100, only 98. It's so strange to walk outwhen its 98 and actually think to yourself "oh nice...it's not as hot asyesterday.">> I posted a couple of pic¢s of my Grand Canyon vacation that my sonand I went on this June. What an Awesome place Hot 112 that day butinspiring>>> Walt, Whidbey Island Wa> IPF, NSIP, UIP, DIP 10/06>> Life may not be the party we hoped for, but while we are here we mightas well dance> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 Walt... oh how tempting! Do I ever wish I could head for Mexico and sit on the beach. Oh, yes, and have a cold one! I'm glad you have so many plans to look forward to. With your son and yes, even moving if that's what makes you happy. Will your son move with you? Take care! MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! WaltTo: Breathe-Support Date: Friday, August 8, 2008, 12:10 PM I'll get inspired by the pictures but I can assure you I don't care howawesome a place is if it's 112 on the day I'm there, I'm not going to beinspired.... lolEven the tv anchors admitted how ridiculous it sounded when they werediscussing us having a cold front for a couple of days and finallyhaving a day it didn't hit 100, only 98. It's so strange to walk outwhen its 98 and actually think to yourself "oh nice...it's not as hot asyesterday.">> I posted a couple of pic¢s of my Grand Canyon vacation that my sonand I went on this June. What an Awesome place Hot 112 that day butinspiring>>> Walt, Whidbey Island Wa> IPF, NSIP, UIP, DIP 10/06>> Life may not be the party we hoped for, but while we are here we mightas well dance> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 No he wont be moving with me he will graduate in three years and off to collage then me off to Mexico. Now three years sounds so long but THAT is a goal and what I am hoping for. Got to have Goals yes?? Walt, Whidbey Island Wa IPF, NSIP, UIP, DIP 10/06 Life may not be the party we hoped for, but while we are here we might as well dance From: Bruce Moreland <brucemoreland@ gmail.com>Subject: WaltTo: Breathe-Support@ yahoogroups. comDate: Friday, August 8, 2008, 12:10 PM I'll get inspired by the pictures but I can assure you I don't care howawesome a place is if it's 112 on the day I'm there, I'm not going to beinspired.... lolEven the tv anchors admitted how ridiculous it sounded when they werediscussing us having a cold front for a couple of days and finallyhaving a day it didn't hit 100, only 98. It's so strange to walk outwhen its 98 and actually think to yourself "oh nice...it's not as hot asyesterday.">> I posted a couple of pic¢s of my Grand Canyon vacation that my sonand I went on this June. What an Awesome place Hot 112 that day butinspiring>>> Walt, Whidbey Island Wa> IPF, NSIP, UIP, DIP 10/06>> Life may not be the party we hoped for, but while we are here we mightas well dance> Quote Link to comment Share on other sites More sharing options...
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