Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 Thanks to everyone for your responses...I'm starting to feel like a 'regular' now! 1. I agree Carol, but even our Neurosurgeons don't seem to realise how relentless this illness is. It would have been the advice of the Neuro that determined whether Em was accepted into VSK.. > >Sounds to me like they need to learn about NF2!!!! >Carol 2. Craig, I think we were invited for dinner with Lederman because we are Australian (and Em was the first Australian teenager to be treated at his clinic)...As far as his claims to fame re success rates, I honestly would take that with a grain of salt...(again looking back). There have been moments when I have wanted to kick myself for going to America and Em having the treatment. Firstly because it didn't work, but also because it was a huge financial burden. Many of our relatives helped to fund the trip, and I still owe many thousands of dollars. However, I try not to be too hard on myself, and also am trying to let go of the anger/frustration because it is basically a waste of energy. We did what we thought was right, and at the end of the day, if you're doing the best you can, then what more can be done? One moment at a time is my philosophy in life now..everything is constantly being sized up " Is this really a big problem?? " I ask myself that constantly and re-evaluate things into " biggies " and " smallies " and " not worth a second look " . Treacy Is your boss reading your email? ....Probably Keep your messages private by using Lycos Mail. Sign up today at http://mail.lycos.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 Thanks to everyone for your responses...I'm starting to feel like a 'regular' now! 1. I agree Carol, but even our Neurosurgeons don't seem to realise how relentless this illness is. It would have been the advice of the Neuro that determined whether Em was accepted into VSK.. > >Sounds to me like they need to learn about NF2!!!! >Carol 2. Craig, I think we were invited for dinner with Lederman because we are Australian (and Em was the first Australian teenager to be treated at his clinic)...As far as his claims to fame re success rates, I honestly would take that with a grain of salt...(again looking back). There have been moments when I have wanted to kick myself for going to America and Em having the treatment. Firstly because it didn't work, but also because it was a huge financial burden. Many of our relatives helped to fund the trip, and I still owe many thousands of dollars. However, I try not to be too hard on myself, and also am trying to let go of the anger/frustration because it is basically a waste of energy. We did what we thought was right, and at the end of the day, if you're doing the best you can, then what more can be done? One moment at a time is my philosophy in life now..everything is constantly being sized up " Is this really a big problem?? " I ask myself that constantly and re-evaluate things into " biggies " and " smallies " and " not worth a second look " . Treacy Is your boss reading your email? ....Probably Keep your messages private by using Lycos Mail. Sign up today at http://mail.lycos.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 Treacy, you hit on one of my buzz words--perspective! I really enjoy reading your posts... the reality of experiences weaved in with these gems of wisdom. I think I stole it from my Mom, but I've said many times, " we're all just doing what we can with what we have at any particular time. " It really hits me, because of my own experiences, how much we're forced to change our outlooks sometimes... and how positive those changes can be when it comes to living day-to-day in a meaningful way. Way to be there for and yourself now! Many Hugs, (hoping 's nausea is subsiding and she's feeling stronger by the day) Treacy Lyndel wrote: > However, I try not to be too hard on myself, and also am trying to let go of the anger/frustration because it is basically a waste of energy. We did what we thought was right, and at the end of the day, if you're doing the best you can, then what more can be done? One moment at a time is my philosophy in life now..everything is constantly being sized up " Is this really a big problem?? " I ask myself that constantly and re-evaluate > things into " biggies " and " smallies " and " not worth a second look " . > Treacy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 Treacy, you hit on one of my buzz words--perspective! I really enjoy reading your posts... the reality of experiences weaved in with these gems of wisdom. I think I stole it from my Mom, but I've said many times, " we're all just doing what we can with what we have at any particular time. " It really hits me, because of my own experiences, how much we're forced to change our outlooks sometimes... and how positive those changes can be when it comes to living day-to-day in a meaningful way. Way to be there for and yourself now! Many Hugs, (hoping 's nausea is subsiding and she's feeling stronger by the day) Treacy Lyndel wrote: > However, I try not to be too hard on myself, and also am trying to let go of the anger/frustration because it is basically a waste of energy. We did what we thought was right, and at the end of the day, if you're doing the best you can, then what more can be done? One moment at a time is my philosophy in life now..everything is constantly being sized up " Is this really a big problem?? " I ask myself that constantly and re-evaluate > things into " biggies " and " smallies " and " not worth a second look " . > Treacy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2008 Report Share Posted October 19, 2008 n, Good morning and welcome back to the group! I'm glad you've finally landed someplace and can begin taking care of yourself. Please follow your doctors advice and get to a pulmonologist asap. I don't know how far you are from Duke (I'm guessing at least 3 hours or so) but it would be worth the trip to be seen there by one of the specialists in this disease. I checked and I see you're getting your messages in the Daily Digest. I haven't done that so I'm unsure of the reply mechanism. But if you go to the board and look at the messages there, the reply button is at the top left corner of the message. Or you can always have the board messages sent directly to your email and reply that way. Please feel free to email me directly if something isn't clear. mbmurtha@.... Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 Various Hello...I'm one of the resident "lurkers," and while I've posted a fewtimes, I can't seem to post by "reply," only by going to Yahoo Groups, signing in, etc. It's a bit cumbersome. Can anyone tell my how to reply?My Korea to New York City to Rochester, New York back to NYC odyssey has finally, and mercifully, ended. I am at home on Oak Island, North Carolina. I had to wait 7 weeks for a first appointment with a doctor,who, surprise, surprise, thinks I should see a pulmonologist.This doctor had me walk around the parking lot for 5 minutes, then checked my oxygen level...or rather, the receptionist did. She seemed to think it was necessary to wait until the number on the oximeter stopped going up, which of course it continued to do until it hit 90 (it had started out at 81)which took about 5 minutes. I've also started on oxygen, but only using it part time. The portable tanks weigh so much that I find them very difficult to move around.Dale's experience with the doctor thinking 5 liters of oxygen was tops for going home made me want to ask if there is any lighter weight alternative to the 12 lb tanks mentioned above?My best to all, and I hope Dale is speedily home.n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2008 Report Share Posted October 19, 2008 n, Good morning and welcome back to the group! I'm glad you've finally landed someplace and can begin taking care of yourself. Please follow your doctors advice and get to a pulmonologist asap. I don't know how far you are from Duke (I'm guessing at least 3 hours or so) but it would be worth the trip to be seen there by one of the specialists in this disease. I checked and I see you're getting your messages in the Daily Digest. I haven't done that so I'm unsure of the reply mechanism. But if you go to the board and look at the messages there, the reply button is at the top left corner of the message. Or you can always have the board messages sent directly to your email and reply that way. Please feel free to email me directly if something isn't clear. mbmurtha@.... Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 Various Hello...I'm one of the resident "lurkers," and while I've posted a fewtimes, I can't seem to post by "reply," only by going to Yahoo Groups, signing in, etc. It's a bit cumbersome. Can anyone tell my how to reply?My Korea to New York City to Rochester, New York back to NYC odyssey has finally, and mercifully, ended. I am at home on Oak Island, North Carolina. I had to wait 7 weeks for a first appointment with a doctor,who, surprise, surprise, thinks I should see a pulmonologist.This doctor had me walk around the parking lot for 5 minutes, then checked my oxygen level...or rather, the receptionist did. She seemed to think it was necessary to wait until the number on the oximeter stopped going up, which of course it continued to do until it hit 90 (it had started out at 81)which took about 5 minutes. I've also started on oxygen, but only using it part time. The portable tanks weigh so much that I find them very difficult to move around.Dale's experience with the doctor thinking 5 liters of oxygen was tops for going home made me want to ask if there is any lighter weight alternative to the 12 lb tanks mentioned above?My best to all, and I hope Dale is speedily home.n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2008 Report Share Posted October 19, 2008 n There is no way you should be using twelve pound tanks at your level of oxygen. For portable there are many choices that are lighter. I use Liquid Helios Marathon which is 5.6 pounds. Helios Plus is 3.6. Going to compressed oxygen, a B Cylinder weighs around 4 pounds. I don't know what oxygen supplier they sent you to but talk to the supplier. Did they check your sleep? If not, a big oversite and ask them to have an overnight oximeter test done on you. It will be brought to your home and you'll put it on your finger and it will record the night. Also, get an oximeter. Check yourself and know what is going on with your oxygen. You have also learned a lesson unfortunately but a good one to learn early and that is you're going to have to take charge of your medical treatment. I don't know where you went to a doctor or are scheduled to see a pulmonologist, but I know your area and near Oak Island (I'm guessing pulmonologist in Wilmington?) I doubt much knowledge of PF. Fortunately though you're only three hours from Duke University. Make an appointment there and they'll do a complete diagnosis and help you understand and get what you need. You didn't mention what your saturation was when sitting? You said it stopped going up at 90 and that concerned me if that was as high as it went. You'll sort it out and get settled in and have what you need matched to you. > > Hello...I'm one of the resident " lurkers, " and while I've posted a few > times, I can't seem to post by " reply, " only by going to Yahoo Groups, > signing in, etc. It's a bit cumbersome. Can anyone tell my how to reply? > > My Korea to New York City to Rochester, New York back to NYC odyssey > has finally, and mercifully, ended. I am at home on Oak Island, North > Carolina. I had to wait 7 weeks for a first appointment with a doctor, > who, surprise, surprise, thinks I should see a pulmonologist. > > This doctor had me walk around the parking lot for 5 minutes, then > checked my oxygen level...or rather, the receptionist did. She seemed > to think it was necessary to wait until the number on the oximeter > stopped going up, which of course it continued to do until it hit 90 > (it had started out at 81)which took about 5 minutes. > > I've also started on oxygen, but only using it part time. The portable > tanks weigh so much that I find them very difficult to move around. > > Dale's experience with the doctor thinking 5 liters of oxygen was tops > for going home made me want to ask if there is any lighter weight > alternative to the 12 lb tanks mentioned above? > > My best to all, and I hope Dale is speedily home. > > n > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2008 Report Share Posted October 19, 2008 n There is no way you should be using twelve pound tanks at your level of oxygen. For portable there are many choices that are lighter. I use Liquid Helios Marathon which is 5.6 pounds. Helios Plus is 3.6. Going to compressed oxygen, a B Cylinder weighs around 4 pounds. I don't know what oxygen supplier they sent you to but talk to the supplier. Did they check your sleep? If not, a big oversite and ask them to have an overnight oximeter test done on you. It will be brought to your home and you'll put it on your finger and it will record the night. Also, get an oximeter. Check yourself and know what is going on with your oxygen. You have also learned a lesson unfortunately but a good one to learn early and that is you're going to have to take charge of your medical treatment. I don't know where you went to a doctor or are scheduled to see a pulmonologist, but I know your area and near Oak Island (I'm guessing pulmonologist in Wilmington?) I doubt much knowledge of PF. Fortunately though you're only three hours from Duke University. Make an appointment there and they'll do a complete diagnosis and help you understand and get what you need. You didn't mention what your saturation was when sitting? You said it stopped going up at 90 and that concerned me if that was as high as it went. You'll sort it out and get settled in and have what you need matched to you. > > Hello...I'm one of the resident " lurkers, " and while I've posted a few > times, I can't seem to post by " reply, " only by going to Yahoo Groups, > signing in, etc. It's a bit cumbersome. Can anyone tell my how to reply? > > My Korea to New York City to Rochester, New York back to NYC odyssey > has finally, and mercifully, ended. I am at home on Oak Island, North > Carolina. I had to wait 7 weeks for a first appointment with a doctor, > who, surprise, surprise, thinks I should see a pulmonologist. > > This doctor had me walk around the parking lot for 5 minutes, then > checked my oxygen level...or rather, the receptionist did. She seemed > to think it was necessary to wait until the number on the oximeter > stopped going up, which of course it continued to do until it hit 90 > (it had started out at 81)which took about 5 minutes. > > I've also started on oxygen, but only using it part time. The portable > tanks weigh so much that I find them very difficult to move around. > > Dale's experience with the doctor thinking 5 liters of oxygen was tops > for going home made me want to ask if there is any lighter weight > alternative to the 12 lb tanks mentioned above? > > My best to all, and I hope Dale is speedily home. > > n > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2008 Report Share Posted October 19, 2008 n As to replying from daily messages, I don't know what email you're using. However, make sure you're opening the mail all the way up and if it has any additional thing to click on the mail to see all images or open links that you click that. > > n, > Good morning and welcome back to the group! I'm glad you've finally landed someplace and can begin taking care of yourself. Please follow your doctors advice and get to a pulmonologist asap. I don't know how far you are from Duke (I'm guessing at least 3 hours or so) but it would be worth the trip to be seen there by one of the specialists in this disease. > I checked and I see you're getting your messages in the Daily Digest. I haven't done that so I'm unsure of the reply mechanism. But if you go to the board and look at the messages there, the reply button is at the top left corner of the message. Or you can always have the board messages sent directly to your email and reply that way. Please feel free to email me directly if something isn't clear. mbmurtha@... > > > Beth-Moderator > Fibrotic NSIP 06/06 UCTD 06/08 > > > > > > > Various > > > Hello...I'm one of the resident " lurkers, " and while I've posted a few > times, I can't seem to post by " reply, " only by going to Yahoo Groups, > signing in, etc. It's a bit cumbersome. Can anyone tell my how to reply? > > My Korea to New York City to Rochester, New York back to NYC odyssey > has finally, and mercifully, ended. I am at home on Oak Island, North > Carolina. I had to wait 7 weeks for a first appointment with a doctor, > who, surprise, surprise, thinks I should see a pulmonologist. > > This doctor had me walk around the parking lot for 5 minutes, then > checked my oxygen level...or rather, the receptionist did. She seemed > to think it was necessary to wait until the number on the oximeter > stopped going up, which of course it continued to do until it hit 90 > (it had started out at 81)which took about 5 minutes. > > I've also started on oxygen, but only using it part time. The portable > tanks weigh so much that I find them very difficult to move around. > > Dale's experience with the doctor thinking 5 liters of oxygen was tops > for going home made me want to ask if there is any lighter weight > alternative to the 12 lb tanks mentioned above? > > My best to all, and I hope Dale is speedily home. > > n > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2008 Report Share Posted October 19, 2008 n This is an excellent site to learn about choices of oxygen equipment. While its a bit outdated, none of the basics have changed. http://www.portableoxygen.org/ > >> > n,> > Good morning and welcome back to the group! I'm glad you've finally> landed someplace and can begin taking care of yourself. Please follow> your doctors advice and get to a pulmonologist asap. I don't know how> far you are from Duke (I'm guessing at least 3 hours or so) but it would> be worth the trip to be seen there by one of the specialists in this> disease.> > I checked and I see you're getting your messages in the Daily Digest.> I haven't done that so I'm unsure of the reply mechanism. But if you go> to the board and look at the messages there, the reply button is at the> top left corner of the message. Or you can always have the board> messages sent directly to your email and reply that way. Please feel> free to email me directly if something isn't clear. mbmurtha@> >> >> > Beth-Moderator> > Fibrotic NSIP 06/06 UCTD 06/08> >> >> >> >> >> >> > Various> >> >> > Hello...I'm one of the resident "lurkers," and while I've posted a few> > times, I can't seem to post by "reply," only by going to Yahoo Groups,> > signing in, etc. It's a bit cumbersome. Can anyone tell my how to> reply?> >> > My Korea to New York City to Rochester, New York back to NYC odyssey> > has finally, and mercifully, ended. I am at home on Oak Island, North> > Carolina. I had to wait 7 weeks for a first appointment with a doctor,> > who, surprise, surprise, thinks I should see a pulmonologist.> >> > This doctor had me walk around the parking lot for 5 minutes, then> > checked my oxygen level...or rather, the receptionist did. She seemed> > to think it was necessary to wait until the number on the oximeter> > stopped going up, which of course it continued to do until it hit 90> > (it had started out at 81)which took about 5 minutes.> >> > I've also started on oxygen, but only using it part time. The portable> > tanks weigh so much that I find them very difficult to move around.> >> > Dale's experience with the doctor thinking 5 liters of oxygen was tops> > for going home made me want to ask if there is any lighter weight> > alternative to the 12 lb tanks mentioned above?> >> > My best to all, and I hope Dale is speedily home.> >> > n> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2008 Report Share Posted October 19, 2008 n This is an excellent site to learn about choices of oxygen equipment. While its a bit outdated, none of the basics have changed. http://www.portableoxygen.org/ > >> > n,> > Good morning and welcome back to the group! I'm glad you've finally> landed someplace and can begin taking care of yourself. Please follow> your doctors advice and get to a pulmonologist asap. I don't know how> far you are from Duke (I'm guessing at least 3 hours or so) but it would> be worth the trip to be seen there by one of the specialists in this> disease.> > I checked and I see you're getting your messages in the Daily Digest.> I haven't done that so I'm unsure of the reply mechanism. But if you go> to the board and look at the messages there, the reply button is at the> top left corner of the message. Or you can always have the board> messages sent directly to your email and reply that way. Please feel> free to email me directly if something isn't clear. mbmurtha@> >> >> > Beth-Moderator> > Fibrotic NSIP 06/06 UCTD 06/08> >> >> >> >> >> >> > Various> >> >> > Hello...I'm one of the resident "lurkers," and while I've posted a few> > times, I can't seem to post by "reply," only by going to Yahoo Groups,> > signing in, etc. It's a bit cumbersome. Can anyone tell my how to> reply?> >> > My Korea to New York City to Rochester, New York back to NYC odyssey> > has finally, and mercifully, ended. I am at home on Oak Island, North> > Carolina. I had to wait 7 weeks for a first appointment with a doctor,> > who, surprise, surprise, thinks I should see a pulmonologist.> >> > This doctor had me walk around the parking lot for 5 minutes, then> > checked my oxygen level...or rather, the receptionist did. She seemed> > to think it was necessary to wait until the number on the oximeter> > stopped going up, which of course it continued to do until it hit 90> > (it had started out at 81)which took about 5 minutes.> >> > I've also started on oxygen, but only using it part time. The portable> > tanks weigh so much that I find them very difficult to move around.> >> > Dale's experience with the doctor thinking 5 liters of oxygen was tops> > for going home made me want to ask if there is any lighter weight> > alternative to the 12 lb tanks mentioned above?> >> > My best to all, and I hope Dale is speedily home.> >> > n> >> Quote Link to comment Share on other sites More sharing options...
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