Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 Bruce, I have had the VQ Scan. It was part of the transplant evaluation. I had so many tests in the 4 1/2 day that I was there, my head was spinning. Yesturday I went to the University Hospital here to begin my testing for the new consult pulmo. They did an HRCT. They used a different machine than what I had used before. They took me in and out of there in about 3 minutes. Always before, it was a stop and go, longer version. I asked why the test was so short and she said that these were new machines and they cut the film into slices. (or something like that) I didn't have to get undressed or anything. It was kind of like microwave popcorn. Fast. And I was glad to get it over with so quickly. Lying on my back is not a good thing. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > >> > I think the insomnia so many of us have is due to> > stress, depression, and fear; prednisone or other> > meds or combinations of meds; oxygen deprivation> > for some who don't realize they need more; sleep> > disorders; late-evening eating; caffeine (including> > chocolate); and pain and discomfort from all kinds> > of physical conditions. Also, some people rest and> > nap so much during the day that they simply aren't> > sleepy at night.> > > > Sandie,> > It's good that you have a CT scheduled next week.> > That should yield some important information. You> > still need to see a pulmonoligist for chronic or> > prolonged shortness of breath.> > > > The tests I'm having Fri. are:> > 1. Flouroscope, or esophagram - to see how well the> > diaphragm is working, or in my case to confirm that> > my meds are in fact controlling the reflux disease.> > If it isn't, I'll probably get taken off the list.> > 2. VQ scan - I honestly don't even remember from> > the first one, but Bruce will know.> > 3. HRCT (high resolution CT scan) of my lungs - to> > show status or progression of my IPF> > > > I'm trying to get double-listed at two centers, and> > one center wants all my tests to be within a year> > old. So I'm having to repeat some things. It took> > a month to get my chart from one center to the> > other, and it was 14 items short of being complete.> > grrrr. My appointment out-of-town is Feb. 1, so> > now we're in a hurry to repeat those tests before> > then. On the other hand, I'm lucky that they aren't> > going to make me go through the entire transplant> > evaluation there, which some centers would do.> > > > I know where ville is. I'm glad you had good> > memories there.> > > > Jon A.,> > It sounds like you're ahead of the game in terms of> > the courage it takes to deal with this nasty disease.> > My IPF was also discovered "by accident" - such a> > huge kick in the gut. It's great that you quit smoking.> > Congratulations on your marriage and on finding this> > site, which is one of the best places to be when> > you need support, knowledge, and caring friends.> > I'm sorry you're sick, but welcome aboard.> > > > Lou,> > Oh goody! You got Miss . I know how much> > that will mean to you - I'm sure you've fallen in> > love already. Enjoy the new baby!> > > > Joyce,> > Yes, I've been jumping through hoops for 3 years,> > and I don't plan to stop now! I hate it for us who> > have SO much trouble doing the simplest of things.> > Thank you, dear one, for your loving words of> > encouragement.> > > > Bruce,> > Great to hear that your doctor appointment went> > well. He sounds like a good physician and a> > caring person. Good for you for keepin' on> > keepin' on! That's what it takes, my friend.> > You'll fare so much better with a doctor you> > feel comfortable with. I do hope you won't> > have to get another CT for a while - omg you've> > had so many!!!!> > > > Hugs and blessings,> > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 Hi Gwynne - I dont have a CT scheduled but I should! That Flouroscope is what I should have done about my reflux it is driving me crazy and for some reason the medication has stopped working which is driving me crazy I am popping pills left and right and nothing is working. Those sound like some pretty intensive tests. I know what its like ot have to repeat them I think we all do since we do it so frequent. But it will all be worth it when you have that new lung! Hang in there my friend you are in my thoughts and prayers! Sandie > > > > I think the insomnia so many of us have is due to > > stress, depression, and fear; prednisone or other > > meds or combinations of meds; oxygen deprivation > > for some who don't realize they need more; sleep > > disorders; late-evening eating; caffeine (including > > chocolate); and pain and discomfort from all kinds > > of physical conditions. Also, some people rest and > > nap so much during the day that they simply aren't > > sleepy at night. > > > > Sandie, > > It's good that you have a CT scheduled next week. > > That should yield some important information. You > > still need to see a pulmonoligist for chronic or > > prolonged shortness of breath. > > > > The tests I'm having Fri. are: > > 1. Flouroscope, or esophagram - to see how well the > > diaphragm is working, or in my case to confirm that > > my meds are in fact controlling the reflux disease. > > If it isn't, I'll probably get taken off the list. > > 2. VQ scan - I honestly don't even remember from > > the first one, but Bruce will know. > > 3. HRCT (high resolution CT scan) of my lungs - to > > show status or progression of my IPF > > > > I'm trying to get double-listed at two centers, and > > one center wants all my tests to be within a year > > old. So I'm having to repeat some things. It took > > a month to get my chart from one center to the > > other, and it was 14 items short of being complete. > > grrrr. My appointment out-of-town is Feb. 1, so > > now we're in a hurry to repeat those tests before > > then. On the other hand, I'm lucky that they aren't > > going to make me go through the entire transplant > > evaluation there, which some centers would do. > > > > I know where ville is. I'm glad you had good > > memories there. > > > > Jon A., > > It sounds like you're ahead of the game in terms of > > the courage it takes to deal with this nasty disease. > > My IPF was also discovered " by accident " - such a > > huge kick in the gut. It's great that you quit smoking. > > Congratulations on your marriage and on finding this > > site, which is one of the best places to be when > > you need support, knowledge, and caring friends. > > I'm sorry you're sick, but welcome aboard. > > > > Lou, > > Oh goody! You got Miss . I know how much > > that will mean to you - I'm sure you've fallen in > > love already. Enjoy the new baby! > > > > Joyce, > > Yes, I've been jumping through hoops for 3 years, > > and I don't plan to stop now! I hate it for us who > > have SO much trouble doing the simplest of things. > > Thank you, dear one, for your loving words of > > encouragement. > > > > Bruce, > > Great to hear that your doctor appointment went > > well. He sounds like a good physician and a > > caring person. Good for you for keepin' on > > keepin' on! That's what it takes, my friend. > > You'll fare so much better with a doctor you > > feel comfortable with. I do hope you won't > > have to get another CT for a while - omg you've > > had so many!!!! > > > > Hugs and blessings, > > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 Hey....I want the microwave version....none of that old oven for me either. > > > > > > I think the insomnia so many of us have is due to > > > stress, depression, and fear; prednisone or other > > > meds or combinations of meds; oxygen deprivation > > > for some who don't realize they need more; sleep > > > disorders; late-evening eating; caffeine (including > > > chocolate); and pain and discomfort from all kinds > > > of physical conditions. Also, some people rest and > > > nap so much during the day that they simply aren't > > > sleepy at night. > > > > > > Sandie, > > > It's good that you have a CT scheduled next week. > > > That should yield some important information. You > > > still need to see a pulmonoligist for chronic or > > > prolonged shortness of breath. > > > > > > The tests I'm having Fri. are: > > > 1. Flouroscope, or esophagram - to see how well the > > > diaphragm is working, or in my case to confirm that > > > my meds are in fact controlling the reflux disease. > > > If it isn't, I'll probably get taken off the list. > > > 2. VQ scan - I honestly don't even remember from > > > the first one, but Bruce will know. > > > 3. HRCT (high resolution CT scan) of my lungs - to > > > show status or progression of my IPF > > > > > > I'm trying to get double-listed at two centers, and > > > one center wants all my tests to be within a year > > > old. So I'm having to repeat some things. It took > > > a month to get my chart from one center to the > > > other, and it was 14 items short of being complete. > > > grrrr. My appointment out-of-town is Feb. 1, so > > > now we're in a hurry to repeat those tests before > > > then. On the other hand, I'm lucky that they aren't > > > going to make me go through the entire transplant > > > evaluation there, which some centers would do. > > > > > > I know where ville is. I'm glad you had good > > > memories there. > > > > > > Jon A., > > > It sounds like you're ahead of the game in terms of > > > the courage it takes to deal with this nasty disease. > > > My IPF was also discovered " by accident " - such a > > > huge kick in the gut. It's great that you quit smoking. > > > Congratulations on your marriage and on finding this > > > site, which is one of the best places to be when > > > you need support, knowledge, and caring friends. > > > I'm sorry you're sick, but welcome aboard. > > > > > > Lou, > > > Oh goody! You got Miss . I know how much > > > that will mean to you - I'm sure you've fallen in > > > love already. Enjoy the new baby! > > > > > > Joyce, > > > Yes, I've been jumping through hoops for 3 years, > > > and I don't plan to stop now! I hate it for us who > > > have SO much trouble doing the simplest of things. > > > Thank you, dear one, for your loving words of > > > encouragement. > > > > > > Bruce, > > > Great to hear that your doctor appointment went > > > well. He sounds like a good physician and a > > > caring person. Good for you for keepin' on > > > keepin' on! That's what it takes, my friend. > > > You'll fare so much better with a doctor you > > > feel comfortable with. I do hope you won't > > > have to get another CT for a while - omg you've > > > had so many!!!! > > > > > > Hugs and blessings, > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 If your Reflux pills aren't working, please see a gastoenterologist very quickly. The damage that can be caused is too severe to not find out the problem. I would suspect an upper endoscopy may well be in order-they sedate and need to keep you on your normal oxygen but the procedure is really not bad at all. Some doctors might try an upper GI first but my gastroenterologist does not value them much although my primary does. Also, sounds like you're going to have to find a way to elevate the head of your bed for sleep. > > > > > > I think the insomnia so many of us have is due to > > > stress, depression, and fear; prednisone or other > > > meds or combinations of meds; oxygen deprivation > > > for some who don't realize they need more; sleep > > > disorders; late-evening eating; caffeine (including > > > chocolate); and pain and discomfort from all kinds > > > of physical conditions. Also, some people rest and > > > nap so much during the day that they simply aren't > > > sleepy at night. > > > > > > Sandie, > > > It's good that you have a CT scheduled next week. > > > That should yield some important information. You > > > still need to see a pulmonoligist for chronic or > > > prolonged shortness of breath. > > > > > > The tests I'm having Fri. are: > > > 1. Flouroscope, or esophagram - to see how well the > > > diaphragm is working, or in my case to confirm that > > > my meds are in fact controlling the reflux disease. > > > If it isn't, I'll probably get taken off the list. > > > 2. VQ scan - I honestly don't even remember from > > > the first one, but Bruce will know. > > > 3. HRCT (high resolution CT scan) of my lungs - to > > > show status or progression of my IPF > > > > > > I'm trying to get double-listed at two centers, and > > > one center wants all my tests to be within a year > > > old. So I'm having to repeat some things. It took > > > a month to get my chart from one center to the > > > other, and it was 14 items short of being complete. > > > grrrr. My appointment out-of-town is Feb. 1, so > > > now we're in a hurry to repeat those tests before > > > then. On the other hand, I'm lucky that they aren't > > > going to make me go through the entire transplant > > > evaluation there, which some centers would do. > > > > > > I know where ville is. I'm glad you had good > > > memories there. > > > > > > Jon A., > > > It sounds like you're ahead of the game in terms of > > > the courage it takes to deal with this nasty disease. > > > My IPF was also discovered " by accident " - such a > > > huge kick in the gut. It's great that you quit smoking. > > > Congratulations on your marriage and on finding this > > > site, which is one of the best places to be when > > > you need support, knowledge, and caring friends. > > > I'm sorry you're sick, but welcome aboard. > > > > > > Lou, > > > Oh goody! You got Miss . I know how much > > > that will mean to you - I'm sure you've fallen in > > > love already. Enjoy the new baby! > > > > > > Joyce, > > > Yes, I've been jumping through hoops for 3 years, > > > and I don't plan to stop now! I hate it for us who > > > have SO much trouble doing the simplest of things. > > > Thank you, dear one, for your loving words of > > > encouragement. > > > > > > Bruce, > > > Great to hear that your doctor appointment went > > > well. He sounds like a good physician and a > > > caring person. Good for you for keepin' on > > > keepin' on! That's what it takes, my friend. > > > You'll fare so much better with a doctor you > > > feel comfortable with. I do hope you won't > > > have to get another CT for a while - omg you've > > > had so many!!!! > > > > > > Hugs and blessings, > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 Bruce it hasnt been working the last several weeks and so I tried doubling the dose that did it for awhile but then that isnt working, so I added zantax to it 450mg sometimes I take that twice a day along with the protonix and that isnt working either. I see the GI doc on the 31st not soon enough if you ask me. But again we are the only ones that see any problems with it so I cant force them to fix it. So I do what I can to treat it at home. Sandie > > > > > > > > I think the insomnia so many of us have is due to > > > > stress, depression, and fear; prednisone or other > > > > meds or combinations of meds; oxygen deprivation > > > > for some who don't realize they need more; sleep > > > > disorders; late-evening eating; caffeine (including > > > > chocolate); and pain and discomfort from all kinds > > > > of physical conditions. Also, some people rest and > > > > nap so much during the day that they simply aren't > > > > sleepy at night. > > > > > > > > Sandie, > > > > It's good that you have a CT scheduled next week. > > > > That should yield some important information. You > > > > still need to see a pulmonoligist for chronic or > > > > prolonged shortness of breath. > > > > > > > > The tests I'm having Fri. are: > > > > 1. Flouroscope, or esophagram - to see how well the > > > > diaphragm is working, or in my case to confirm that > > > > my meds are in fact controlling the reflux disease. > > > > If it isn't, I'll probably get taken off the list. > > > > 2. VQ scan - I honestly don't even remember from > > > > the first one, but Bruce will know. > > > > 3. HRCT (high resolution CT scan) of my lungs - to > > > > show status or progression of my IPF > > > > > > > > I'm trying to get double-listed at two centers, and > > > > one center wants all my tests to be within a year > > > > old. So I'm having to repeat some things. It took > > > > a month to get my chart from one center to the > > > > other, and it was 14 items short of being complete. > > > > grrrr. My appointment out-of-town is Feb. 1, so > > > > now we're in a hurry to repeat those tests before > > > > then. On the other hand, I'm lucky that they aren't > > > > going to make me go through the entire transplant > > > > evaluation there, which some centers would do. > > > > > > > > I know where ville is. I'm glad you had good > > > > memories there. > > > > > > > > Jon A., > > > > It sounds like you're ahead of the game in terms of > > > > the courage it takes to deal with this nasty disease. > > > > My IPF was also discovered " by accident " - such a > > > > huge kick in the gut. It's great that you quit smoking. > > > > Congratulations on your marriage and on finding this > > > > site, which is one of the best places to be when > > > > you need support, knowledge, and caring friends. > > > > I'm sorry you're sick, but welcome aboard. > > > > > > > > Lou, > > > > Oh goody! You got Miss . I know how much > > > > that will mean to you - I'm sure you've fallen in > > > > love already. Enjoy the new baby! > > > > > > > > Joyce, > > > > Yes, I've been jumping through hoops for 3 years, > > > > and I don't plan to stop now! I hate it for us who > > > > have SO much trouble doing the simplest of things. > > > > Thank you, dear one, for your loving words of > > > > encouragement. > > > > > > > > Bruce, > > > > Great to hear that your doctor appointment went > > > > well. He sounds like a good physician and a > > > > caring person. Good for you for keepin' on > > > > keepin' on! That's what it takes, my friend. > > > > You'll fare so much better with a doctor you > > > > feel comfortable with. I do hope you won't > > > > have to get another CT for a while - omg you've > > > > had so many!!!! > > > > > > > > Hugs and blessings, > > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 Overall, Protonix works the poorest of the inhibitors. Now, for some people its the one that works best. But if its not working a change might be in order. Nexium is shown to work best and Prilosec Second. Of course, depending on insurance, Nexium is the most expensive. Often it is cheaper to get the equivalent of Prilosec OTC over the counter. Note: 20 mg of Prilosec generally is considered equal to about 40 mg of Nexium. I would definitely get checked and then see if a change is in order. For any wondering why the hospitals use Protonix so much, I've been told that they get it free in an effort to try to get patients to start using it. Oh and I just had someone help me set up my Mattress Genie.....oh my. I love it. > > > > > > > > > > I think the insomnia so many of us have is due to > > > > > stress, depression, and fear; prednisone or other > > > > > meds or combinations of meds; oxygen deprivation > > > > > for some who don't realize they need more; sleep > > > > > disorders; late-evening eating; caffeine (including > > > > > chocolate); and pain and discomfort from all kinds > > > > > of physical conditions. Also, some people rest and > > > > > nap so much during the day that they simply aren't > > > > > sleepy at night. > > > > > > > > > > Sandie, > > > > > It's good that you have a CT scheduled next week. > > > > > That should yield some important information. You > > > > > still need to see a pulmonoligist for chronic or > > > > > prolonged shortness of breath. > > > > > > > > > > The tests I'm having Fri. are: > > > > > 1. Flouroscope, or esophagram - to see how well the > > > > > diaphragm is working, or in my case to confirm that > > > > > my meds are in fact controlling the reflux disease. > > > > > If it isn't, I'll probably get taken off the list. > > > > > 2. VQ scan - I honestly don't even remember from > > > > > the first one, but Bruce will know. > > > > > 3. HRCT (high resolution CT scan) of my lungs - to > > > > > show status or progression of my IPF > > > > > > > > > > I'm trying to get double-listed at two centers, and > > > > > one center wants all my tests to be within a year > > > > > old. So I'm having to repeat some things. It took > > > > > a month to get my chart from one center to the > > > > > other, and it was 14 items short of being complete. > > > > > grrrr. My appointment out-of-town is Feb. 1, so > > > > > now we're in a hurry to repeat those tests before > > > > > then. On the other hand, I'm lucky that they aren't > > > > > going to make me go through the entire transplant > > > > > evaluation there, which some centers would do. > > > > > > > > > > I know where ville is. I'm glad you had good > > > > > memories there. > > > > > > > > > > Jon A., > > > > > It sounds like you're ahead of the game in terms of > > > > > the courage it takes to deal with this nasty disease. > > > > > My IPF was also discovered " by accident " - such a > > > > > huge kick in the gut. It's great that you quit smoking. > > > > > Congratulations on your marriage and on finding this > > > > > site, which is one of the best places to be when > > > > > you need support, knowledge, and caring friends. > > > > > I'm sorry you're sick, but welcome aboard. > > > > > > > > > > Lou, > > > > > Oh goody! You got Miss . I know how much > > > > > that will mean to you - I'm sure you've fallen in > > > > > love already. Enjoy the new baby! > > > > > > > > > > Joyce, > > > > > Yes, I've been jumping through hoops for 3 years, > > > > > and I don't plan to stop now! I hate it for us who > > > > > have SO much trouble doing the simplest of things. > > > > > Thank you, dear one, for your loving words of > > > > > encouragement. > > > > > > > > > > Bruce, > > > > > Great to hear that your doctor appointment went > > > > > well. He sounds like a good physician and a > > > > > caring person. Good for you for keepin' on > > > > > keepin' on! That's what it takes, my friend. > > > > > You'll fare so much better with a doctor you > > > > > feel comfortable with. I do hope you won't > > > > > have to get another CT for a while - omg you've > > > > > had so many!!!! > > > > > > > > > > Hugs and blessings, > > > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 Yes, I looked at motor homes for rent before. Its like you can drive and stay in five star hotels cheaper. You think the price was high. Imagine the gas. Its like I looked at trips on a train using a sleeping compartment. Train is cheap, sleeping more than any hotel. > > > > > > > > > > > > I think the insomnia so many of us have is due to > > > > > > stress, depression, and fear; prednisone or other > > > > > > meds or combinations of meds; oxygen deprivation > > > > > > for some who don't realize they need more; sleep > > > > > > disorders; late-evening eating; caffeine (including > > > > > > chocolate); and pain and discomfort from all kinds > > > > > > of physical conditions. Also, some people rest and > > > > > > nap so much during the day that they simply aren't > > > > > > sleepy at night. > > > > > > > > > > > > Sandie, > > > > > > It's good that you have a CT scheduled next week. > > > > > > That should yield some important information. You > > > > > > still need to see a pulmonoligist for chronic or > > > > > > prolonged shortness of breath. > > > > > > > > > > > > The tests I'm having Fri. are: > > > > > > 1. Flouroscope, or esophagram - to see how well the > > > > > > diaphragm is working, or in my case to confirm that > > > > > > my meds are in fact controlling the reflux disease. > > > > > > If it isn't, I'll probably get taken off the list. > > > > > > 2. VQ scan - I honestly don't even remember from > > > > > > the first one, but Bruce will know. > > > > > > 3. HRCT (high resolution CT scan) of my lungs - to > > > > > > show status or progression of my IPF > > > > > > > > > > > > I'm trying to get double-listed at two centers, and > > > > > > one center wants all my tests to be within a year > > > > > > old. So I'm having to repeat some things. It took > > > > > > a month to get my chart from one center to the > > > > > > other, and it was 14 items short of being complete. > > > > > > grrrr. My appointment out-of-town is Feb. 1, so > > > > > > now we're in a hurry to repeat those tests before > > > > > > then. On the other hand, I'm lucky that they aren't > > > > > > going to make me go through the entire transplant > > > > > > evaluation there, which some centers would do. > > > > > > > > > > > > I know where ville is. I'm glad you had good > > > > > > memories there. > > > > > > > > > > > > Jon A., > > > > > > It sounds like you're ahead of the game in terms of > > > > > > the courage it takes to deal with this nasty disease. > > > > > > My IPF was also discovered " by accident " - such a > > > > > > huge kick in the gut. It's great that you quit smoking. > > > > > > Congratulations on your marriage and on finding this > > > > > > site, which is one of the best places to be when > > > > > > you need support, knowledge, and caring friends. > > > > > > I'm sorry you're sick, but welcome aboard. > > > > > > > > > > > > Lou, > > > > > > Oh goody! You got Miss . I know how much > > > > > > that will mean to you - I'm sure you've fallen in > > > > > > love already. Enjoy the new baby! > > > > > > > > > > > > Joyce, > > > > > > Yes, I've been jumping through hoops for 3 years, > > > > > > and I don't plan to stop now! I hate it for us who > > > > > > have SO much trouble doing the simplest of things. > > > > > > Thank you, dear one, for your loving words of > > > > > > encouragement. > > > > > > > > > > > > Bruce, > > > > > > Great to hear that your doctor appointment went > > > > > > well. He sounds like a good physician and a > > > > > > caring person. Good for you for keepin' on > > > > > > keepin' on! That's what it takes, my friend. > > > > > > You'll fare so much better with a doctor you > > > > > > feel comfortable with. I do hope you won't > > > > > > have to get another CT for a while - omg you've > > > > > > had so many!!!! > > > > > > > > > > > > Hugs and blessings, > > > > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 If you've tried the others and only Protonix works, the right process and notes from your doctor may convince the insurer to let you have it at the same tier price as the others. That isn't commonly known but it does happen sometimes. Always worth a call to them. > > > > > > > > > > > > > > I think the insomnia so many of us have is due to > > > > > > > stress, depression, and fear; prednisone or other > > > > > > > meds or combinations of meds; oxygen deprivation > > > > > > > for some who don't realize they need more; sleep > > > > > > > disorders; late-evening eating; caffeine (including > > > > > > > chocolate); and pain and discomfort from all kinds > > > > > > > of physical conditions. Also, some people rest and > > > > > > > nap so much during the day that they simply aren't > > > > > > > sleepy at night. > > > > > > > > > > > > > > Sandie, > > > > > > > It's good that you have a CT scheduled next week. > > > > > > > That should yield some important information. You > > > > > > > still need to see a pulmonoligist for chronic or > > > > > > > prolonged shortness of breath. > > > > > > > > > > > > > > The tests I'm having Fri. are: > > > > > > > 1. Flouroscope, or esophagram - to see how well the > > > > > > > diaphragm is working, or in my case to confirm that > > > > > > > my meds are in fact controlling the reflux disease. > > > > > > > If it isn't, I'll probably get taken off the list. > > > > > > > 2. VQ scan - I honestly don't even remember from > > > > > > > the first one, but Bruce will know. > > > > > > > 3. HRCT (high resolution CT scan) of my lungs - to > > > > > > > show status or progression of my IPF > > > > > > > > > > > > > > I'm trying to get double-listed at two centers, and > > > > > > > one center wants all my tests to be within a year > > > > > > > old. So I'm having to repeat some things. It took > > > > > > > a month to get my chart from one center to the > > > > > > > other, and it was 14 items short of being complete. > > > > > > > grrrr. My appointment out-of-town is Feb. 1, so > > > > > > > now we're in a hurry to repeat those tests before > > > > > > > then. On the other hand, I'm lucky that they aren't > > > > > > > going to make me go through the entire transplant > > > > > > > evaluation there, which some centers would do. > > > > > > > > > > > > > > I know where ville is. I'm glad you had good > > > > > > > memories there. > > > > > > > > > > > > > > Jon A., > > > > > > > It sounds like you're ahead of the game in terms of > > > > > > > the courage it takes to deal with this nasty disease. > > > > > > > My IPF was also discovered " by accident " - such a > > > > > > > huge kick in the gut. It's great that you quit smoking. > > > > > > > Congratulations on your marriage and on finding this > > > > > > > site, which is one of the best places to be when > > > > > > > you need support, knowledge, and caring friends. > > > > > > > I'm sorry you're sick, but welcome aboard. > > > > > > > > > > > > > > Lou, > > > > > > > Oh goody! You got Miss . I know how much > > > > > > > that will mean to you - I'm sure you've fallen in > > > > > > > love already. Enjoy the new baby! > > > > > > > > > > > > > > Joyce, > > > > > > > Yes, I've been jumping through hoops for 3 years, > > > > > > > and I don't plan to stop now! I hate it for us who > > > > > > > have SO much trouble doing the simplest of things. > > > > > > > Thank you, dear one, for your loving words of > > > > > > > encouragement. > > > > > > > > > > > > > > Bruce, > > > > > > > Great to hear that your doctor appointment went > > > > > > > well. He sounds like a good physician and a > > > > > > > caring person. Good for you for keepin' on > > > > > > > keepin' on! That's what it takes, my friend. > > > > > > > You'll fare so much better with a doctor you > > > > > > > feel comfortable with. I do hope you won't > > > > > > > have to get another CT for a while - omg you've > > > > > > > had so many!!!! > > > > > > > > > > > > > > Hugs and blessings, > > > > > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 I use Omeprazole which is generic for Prilosec. Only pay $15 copay for 60 capsules. OTC is waaaay more expensive than that. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > > > > >> > > > > > I think the insomnia so many of us have is due to> > > > > > stress, depression, and fear; prednisone or other> > > > > > meds or combinations of meds; oxygen deprivation> > > > > > for some who don't realize they need more; sleep> > > > > > disorders; late-evening eating; caffeine (including> > > > > > chocolate); and pain and discomfort from all kinds> > > > > > of physical conditions. Also, some people rest and> > > > > > nap so much during the day that they simply aren't> > > > > > sleepy at night.> > > > > > > > > > > > Sandie,> > > > > > It's good that you have a CT scheduled next week.> > > > > > That should yield some important information. You> > > > > > still need to see a pulmonoligist for chronic or> > > > > > prolonged shortness of breath.> > > > > > > > > > > > The tests I'm having Fri. are:> > > > > > 1. Flouroscope, or esophagram - to see how well the> > > > > > diaphragm is working, or in my case to confirm that> > > > > > my meds are in fact controlling the reflux disease.> > > > > > If it isn't, I'll probably get taken off the list.> > > > > > 2. VQ scan - I honestly don't even remember from> > > > > > the first one, but Bruce will know.> > > > > > 3. HRCT (high resolution CT scan) of my lungs - to> > > > > > show status or progression of my IPF> > > > > > > > > > > > I'm trying to get double-listed at two centers, and> > > > > > one center wants all my tests to be within a year> > > > > > old. So I'm having to repeat some things. It took> > > > > > a month to get my chart from one center to the> > > > > > other, and it was 14 items short of being complete.> > > > > > grrrr. My appointment out-of-town is Feb. 1, so> > > > > > now we're in a hurry to repeat those tests before> > > > > > then. On the other hand, I'm lucky that they aren't> > > > > > going to make me go through the entire transplant> > > > > > evaluation there, which some centers would do.> > > > > > > > > > > > I know where ville is. I'm glad you had good> > > > > > memories there.> > > > > > > > > > > > Jon A.,> > > > > > It sounds like you're ahead of the game in terms of> > > > > > the courage it takes to deal with this nasty disease.> > > > > > My IPF was also discovered "by accident" - such a> > > > > > huge kick in the gut. It's great that you quit smoking.> > > > > > Congratulations on your marriage and on finding this> > > > > > site, which is one of the best places to be when> > > > > > you need support, knowledge, and caring friends.> > > > > > I'm sorry you're sick, but welcome aboard.> > > > > > > > > > > > Lou,> > > > > > Oh goody! You got Miss . I know how much> > > > > > that will mean to you - I'm sure you've fallen in> > > > > > love already. Enjoy the new baby!> > > > > > > > > > > > Joyce,> > > > > > Yes, I've been jumping through hoops for 3 years,> > > > > > and I don't plan to stop now! I hate it for us who> > > > > > have SO much trouble doing the simplest of things.> > > > > > Thank you, dear one, for your loving words of> > > > > > encouragement.> > > > > > > > > > > > Bruce,> > > > > > Great to hear that your doctor appointment went> > > > > > well. He sounds like a good physician and a> > > > > > caring person. Good for you for keepin' on> > > > > > keepin' on! That's what it takes, my friend.> > > > > > You'll fare so much better with a doctor you> > > > > > feel comfortable with. I do hope you won't> > > > > > have to get another CT for a while - omg you've> > > > > > had so many!!!!> > > > > > > > > > > > Hugs and blessings,> > > > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2008 Report Share Posted January 17, 2008 Well I would if it was working but it isnt. I took some prevacid last night that seemed to work ok but I still seem to be suffering today again. Sandie > > > > > > > > > > > > > > > > I think the insomnia so many of us have is due to > > > > > > > > stress, depression, and fear; prednisone or other > > > > > > > > meds or combinations of meds; oxygen deprivation > > > > > > > > for some who don't realize they need more; sleep > > > > > > > > disorders; late-evening eating; caffeine (including > > > > > > > > chocolate); and pain and discomfort from all kinds > > > > > > > > of physical conditions. Also, some people rest and > > > > > > > > nap so much during the day that they simply aren't > > > > > > > > sleepy at night. > > > > > > > > > > > > > > > > Sandie, > > > > > > > > It's good that you have a CT scheduled next week. > > > > > > > > That should yield some important information. You > > > > > > > > still need to see a pulmonoligist for chronic or > > > > > > > > prolonged shortness of breath. > > > > > > > > > > > > > > > > The tests I'm having Fri. are: > > > > > > > > 1. Flouroscope, or esophagram - to see how well the > > > > > > > > diaphragm is working, or in my case to confirm that > > > > > > > > my meds are in fact controlling the reflux disease. > > > > > > > > If it isn't, I'll probably get taken off the list. > > > > > > > > 2. VQ scan - I honestly don't even remember from > > > > > > > > the first one, but Bruce will know. > > > > > > > > 3. HRCT (high resolution CT scan) of my lungs - to > > > > > > > > show status or progression of my IPF > > > > > > > > > > > > > > > > I'm trying to get double-listed at two centers, and > > > > > > > > one center wants all my tests to be within a year > > > > > > > > old. So I'm having to repeat some things. It took > > > > > > > > a month to get my chart from one center to the > > > > > > > > other, and it was 14 items short of being complete. > > > > > > > > grrrr. My appointment out-of-town is Feb. 1, so > > > > > > > > now we're in a hurry to repeat those tests before > > > > > > > > then. On the other hand, I'm lucky that they aren't > > > > > > > > going to make me go through the entire transplant > > > > > > > > evaluation there, which some centers would do. > > > > > > > > > > > > > > > > I know where ville is. I'm glad you had good > > > > > > > > memories there. > > > > > > > > > > > > > > > > Jon A., > > > > > > > > It sounds like you're ahead of the game in terms of > > > > > > > > the courage it takes to deal with this nasty disease. > > > > > > > > My IPF was also discovered " by accident " - such a > > > > > > > > huge kick in the gut. It's great that you quit smoking. > > > > > > > > Congratulations on your marriage and on finding this > > > > > > > > site, which is one of the best places to be when > > > > > > > > you need support, knowledge, and caring friends. > > > > > > > > I'm sorry you're sick, but welcome aboard. > > > > > > > > > > > > > > > > Lou, > > > > > > > > Oh goody! You got Miss . I know how much > > > > > > > > that will mean to you - I'm sure you've fallen in > > > > > > > > love already. Enjoy the new baby! > > > > > > > > > > > > > > > > Joyce, > > > > > > > > Yes, I've been jumping through hoops for 3 years, > > > > > > > > and I don't plan to stop now! I hate it for us who > > > > > > > > have SO much trouble doing the simplest of things. > > > > > > > > Thank you, dear one, for your loving words of > > > > > > > > encouragement. > > > > > > > > > > > > > > > > Bruce, > > > > > > > > Great to hear that your doctor appointment went > > > > > > > > well. He sounds like a good physician and a > > > > > > > > caring person. Good for you for keepin' on > > > > > > > > keepin' on! That's what it takes, my friend. > > > > > > > > You'll fare so much better with a doctor you > > > > > > > > feel comfortable with. I do hope you won't > > > > > > > > have to get another CT for a while - omg you've > > > > > > > > had so many!!!! > > > > > > > > > > > > > > > > Hugs and blessings, > > > > > > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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