Guest guest Posted January 15, 2008 Report Share Posted January 15, 2008 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 15, 2008 Report Share Posted January 15, 2008 Gwynne and others VQ Scan is done with radioactive isotopes. First you do one hundred breaths of it and they do some scans. Then they give you some via IV and do some more tests. Apparently it picks up some things CT doesn't. Mine was to check for blood clots although they would have done CT if I could have had contrast. I had to wait two hours for them to have isotopes delivered since it was night and unplanned. lol. And, also, I think for tech to return to nuclear department. > > 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 Our hospital here doesnt use protonix they dont even stock it in there pharmacy so whenever I am in the hospital I have to get Nexium. I have tried them all and protonix was the only thing that worked for me. And my insurance co just changed their pharmacy carrier and protonix is only covered a part of it so it would be like 70.00 a month for me, which is stupid then. So we are looking at prilosec to try it right now I am just dieing and nothing is working. I already try to sleep sitting up and nothing seems to work. I have been trying to figure out what my SOB and all that feels like or to compare it to. I suppose only the past smokers would understand this. It feels like when you used to get a chest cold or bronchitis and you have that heaviness on your chest and that taste of smoke in your throat and thats all you can taste, kind of like an ashtray I would think (never ate or tasted an ashtray just a figure of speech) I dont know how to explain it. Thats just what it reminds me of when I used to get bronchitis every year. Sandie Ps. Mattress genie, Bruce is going to sleep well tonight! > > > > > > > > > > > > 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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