Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Hi and everyone -- Well, I did see the doctor on the 5th and I would have let everyone know sooner but have had to have my computer in for repair (all fixed now, thank goodness!!!!). Well, lets just say that the whole appointment was a completely upsetting experience. I guess the doctor had decided that he really didn't want to treat my anyway so he was almost combative just as soon as he walked in the door. My esophagus lining has definite changes due to my acid reflux ( I have been on Nexium for two and half years), stomach looked OK ( just a couple of polyps). As for the colonoscopy, he said everything looked good except I have a lot of small tears in my lining of the intestine -- does anyone else have these? He said I probably have IBS and I told him that is what I thought but I was looking for help in trying to help control it as I have the " runs " every day. He said all he could suggest is Imodium - I told him I have tried that a while ago and it seemed to help and then it stopped working, so I stopped taking it. He had the NERVE to say " well, it probably stopped working because you stopped taking it " -- in essense I lied!!!!!! And that tells me that he has no interest in helping me , nor does he believe what I tell him. (I guess watching the VEDS CD-Rom scared the you-know-what out of him!!!!!) So anyway, I have written him a letter telling what I think and that I did not appreciate being told I was not telling the truth and that I thought it was uncalled for and unprofessional on his part. I have appointment Friday with my primary and I am getting a referral to another doctor in Portland - so far everything I have tried has not helped. In the meantime, last Wednesday I had my 6-month checkup on my aneurysm and an ultrasound done on my brachial artery bypass. Will get those results with Friday. Then on the 26th, it's off to the cardiologist!!!!!!!!!!!!! In June I have a vacation and after May (what I call Doctor month!!! LOL) I think I'll just lay around and play in my gardens. Sorry to rant so long, I've been lonely without my computer (hehehehe) Talk to you soon, and hope all is well ---- - have you heard anything yet for the NIH (I have about 500 messages to go through and don't want to miss anything) Love, Patti - Original Message ----- From: ngsamuelson To: ceda Sent: Wednesday, May 05, 2004 8:25 PM Subject: Patti If I recall correctly, you get the results back from your EGD and Colonoscopy tomorrow. Best Wishes and please let me or us know the results when you have time or are ready. Hugs, S. To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 He said I probably have IBS and I told him that is what I thought but I was looking for help in trying to help control it as I have the " runs " every day. He said all he could suggest is Imodium - I told him I have tried that a while ago and it seemed to help and then it stopped working, so I stopped taking it. Patti, Have you thoyght of Lotronex? I can be sort of dangerous I believe, but for people that have diarrea, especially, it's sometimes the only thing that helps. I know it helped Sis (Lonestar Rose-) before this last potassium drama. Maybe ask your 'new' doctor about it? Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Beth thanks MB.. i was talking to a friend today at work; and she actually made the same comment about 3 days on road and then she looked at me and said then it will take you week to recuperate from the trip if not longer. and my pulmo would just institutionalize for a psychotic episode.. Yes, i was thinking alone; yet i don't travel too far from home as it is.. Would have been one heck of an experience.. So, i am being realistic and not driving.. You just validated for me the insanity..patti, nj > > > > > > From: JOYCE RUDY > > > Subject: No oxygen and flying > > > To: " Breathe-Support " > > > Date: Sunday, February 1, 2009, 11:52 AM > > > > > > > > > I'm still playing telephone tag with The Jewish Hospital and > wonder > > how long ahead that they make an appoointment. Does anyone know if > it > > will be weeks or months? > > > > > > I have decided to not take my oxygen with me on the plane. I am > only > > on 3 liters and the terminal is at sea level in Pheonix and I am > at 5200 > > feet at home so I should be all right walking thru the terminal > and on > > the plane, I am not moving so my need for oxygen will be little. I > don't > > know about Denver's terminal..how long it is, etc. but I think I > can > > make it. That will make things considerably easier for me > traveling. The > > Jewish Hospital said to contact them if you need oxygen and I > will. I > > have to cut expenses and if Medicare won't pay for it I won't take > it. > > It will all ready cost me about $200 aday with dog boarding, plane > fair > > and hotel and food expenses. I hope to be able to get into a motel > or > > hotel that has a shuttle and that should cut expenses a bit. Also, > I > > would like one that has Wifi and breakfast. I think I can make it > on 2 > > meals a day. I hope they have dining facilities too but would love > it if > > there were a Burger King within easy > > > distance..LOL The patient representative said that I could be > there 7 > > days. The key word is COULD so if I plan on the original 4 that > they > > first said what will happen to my return ticket? And if I get a > return > > ticket for 7 days what if they are thru with me in 4? This all > seems so > > complicated. And this telephone tag is aggravating. She leaves me a > > message that says " Call me as soon as possible " and I do and all I > get > > is an answering machine that says she will get back to me in 24- 48 > > hours...well, she never gets back to me in 24 and then there is the > > whole weekend and then when Monday comes I have things I have to > do! I > > have to run around and get the tests results sent and they are in > more > > then one facility! I also have my exercise class and Usually need > to go > > shopping...I can't just sit at home and wait not knowing when they > will > > call. They asked me for my cell phone number which I called and > gave her > > (leaving it on her voice mail which she said would > > > be fine) but she has never used it. I am so frustrated with The > > Jewish I have to just forget about them and go about my business. > > > > > > Today is a bad day breathing wise for me and I don't know > why....I > > feel like I am not getting enough air and my chest feels " heavy " . > I feel > > like one of my dogs is sitting on my chest....does that make sense? > > BlueFlyer JOyce AZ IPF 11-08 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Beth thanks MB.. i was talking to a friend today at work; and she actually made the same comment about 3 days on road and then she looked at me and said then it will take you week to recuperate from the trip if not longer. and my pulmo would just institutionalize for a psychotic episode.. Yes, i was thinking alone; yet i don't travel too far from home as it is.. Would have been one heck of an experience.. So, i am being realistic and not driving.. You just validated for me the insanity..patti, nj > > > > > > From: JOYCE RUDY > > > Subject: No oxygen and flying > > > To: " Breathe-Support " > > > Date: Sunday, February 1, 2009, 11:52 AM > > > > > > > > > I'm still playing telephone tag with The Jewish Hospital and > wonder > > how long ahead that they make an appoointment. Does anyone know if > it > > will be weeks or months? > > > > > > I have decided to not take my oxygen with me on the plane. I am > only > > on 3 liters and the terminal is at sea level in Pheonix and I am > at 5200 > > feet at home so I should be all right walking thru the terminal > and on > > the plane, I am not moving so my need for oxygen will be little. I > don't > > know about Denver's terminal..how long it is, etc. but I think I > can > > make it. That will make things considerably easier for me > traveling. The > > Jewish Hospital said to contact them if you need oxygen and I > will. I > > have to cut expenses and if Medicare won't pay for it I won't take > it. > > It will all ready cost me about $200 aday with dog boarding, plane > fair > > and hotel and food expenses. I hope to be able to get into a motel > or > > hotel that has a shuttle and that should cut expenses a bit. Also, > I > > would like one that has Wifi and breakfast. I think I can make it > on 2 > > meals a day. I hope they have dining facilities too but would love > it if > > there were a Burger King within easy > > > distance..LOL The patient representative said that I could be > there 7 > > days. The key word is COULD so if I plan on the original 4 that > they > > first said what will happen to my return ticket? And if I get a > return > > ticket for 7 days what if they are thru with me in 4? This all > seems so > > complicated. And this telephone tag is aggravating. She leaves me a > > message that says " Call me as soon as possible " and I do and all I > get > > is an answering machine that says she will get back to me in 24- 48 > > hours...well, she never gets back to me in 24 and then there is the > > whole weekend and then when Monday comes I have things I have to > do! I > > have to run around and get the tests results sent and they are in > more > > then one facility! I also have my exercise class and Usually need > to go > > shopping...I can't just sit at home and wait not knowing when they > will > > call. They asked me for my cell phone number which I called and > gave her > > (leaving it on her voice mail which she said would > > > be fine) but she has never used it. I am so frustrated with The > > Jewish I have to just forget about them and go about my business. > > > > > > Today is a bad day breathing wise for me and I don't know > why....I > > feel like I am not getting enough air and my chest feels " heavy " . > I feel > > like one of my dogs is sitting on my chest....does that make sense? > > BlueFlyer JOyce AZ IPF 11-08 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Beth thanks MB.. i was talking to a friend today at work; and she actually made the same comment about 3 days on road and then she looked at me and said then it will take you week to recuperate from the trip if not longer. and my pulmo would just institutionalize for a psychotic episode.. Yes, i was thinking alone; yet i don't travel too far from home as it is.. Would have been one heck of an experience.. So, i am being realistic and not driving.. You just validated for me the insanity..patti, nj > > > > > > From: JOYCE RUDY > > > Subject: No oxygen and flying > > > To: " Breathe-Support " > > > Date: Sunday, February 1, 2009, 11:52 AM > > > > > > > > > I'm still playing telephone tag with The Jewish Hospital and > wonder > > how long ahead that they make an appoointment. Does anyone know if > it > > will be weeks or months? > > > > > > I have decided to not take my oxygen with me on the plane. I am > only > > on 3 liters and the terminal is at sea level in Pheonix and I am > at 5200 > > feet at home so I should be all right walking thru the terminal > and on > > the plane, I am not moving so my need for oxygen will be little. I > don't > > know about Denver's terminal..how long it is, etc. but I think I > can > > make it. That will make things considerably easier for me > traveling. The > > Jewish Hospital said to contact them if you need oxygen and I > will. I > > have to cut expenses and if Medicare won't pay for it I won't take > it. > > It will all ready cost me about $200 aday with dog boarding, plane > fair > > and hotel and food expenses. I hope to be able to get into a motel > or > > hotel that has a shuttle and that should cut expenses a bit. Also, > I > > would like one that has Wifi and breakfast. I think I can make it > on 2 > > meals a day. I hope they have dining facilities too but would love > it if > > there were a Burger King within easy > > > distance..LOL The patient representative said that I could be > there 7 > > days. The key word is COULD so if I plan on the original 4 that > they > > first said what will happen to my return ticket? And if I get a > return > > ticket for 7 days what if they are thru with me in 4? This all > seems so > > complicated. And this telephone tag is aggravating. She leaves me a > > message that says " Call me as soon as possible " and I do and all I > get > > is an answering machine that says she will get back to me in 24- 48 > > hours...well, she never gets back to me in 24 and then there is the > > whole weekend and then when Monday comes I have things I have to > do! I > > have to run around and get the tests results sent and they are in > more > > then one facility! I also have my exercise class and Usually need > to go > > shopping...I can't just sit at home and wait not knowing when they > will > > call. They asked me for my cell phone number which I called and > gave her > > (leaving it on her voice mail which she said would > > > be fine) but she has never used it. I am so frustrated with The > > Jewish I have to just forget about them and go about my business. > > > > > > Today is a bad day breathing wise for me and I don't know > why....I > > feel like I am not getting enough air and my chest feels " heavy " . > I feel > > like one of my dogs is sitting on my chest....does that make sense? > > BlueFlyer JOyce AZ IPF 11-08 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Bruce thanks, yes i was planning alone.. would be great if my girls would come.. but right now i'll just be glad my one daughter finally said yes to going to a basketball game with me.. Not giving up on the trip yet though; just maybe i can convince one to go... patti,NJ > > > > > > > > From: JOYCE RUDY > > > > Subject: No oxygen and flying > > > > To: " Breathe-Support " > > > > Date: Sunday, February 1, 2009, 11:52 AM > > > > > > > > > > > > I'm still playing telephone tag with The Jewish Hospital and > > wonder > > > how long ahead that they make an appoointment. Does anyone know if > > it > > > will be weeks or months? > > > > > > > > I have decided to not take my oxygen with me on the plane. I am > > only > > > on 3 liters and the terminal is at sea level in Pheonix and I am > > at 5200 > > > feet at home so I should be all right walking thru the terminal > > and on > > > the plane, I am not moving so my need for oxygen will be little. I > > don't > > > know about Denver's terminal..how long it is, etc. but I think I > > can > > > make it. That will make things considerably easier for me > > traveling. The > > > Jewish Hospital said to contact them if you need oxygen and I > > will. I > > > have to cut expenses and if Medicare won't pay for it I won't take > > it. > > > It will all ready cost me about $200 aday with dog boarding, plane > > fair > > > and hotel and food expenses. I hope to be able to get into a motel > > or > > > hotel that has a shuttle and that should cut expenses a bit. Also, > > I > > > would like one that has Wifi and breakfast. I think I can make it > > on 2 > > > meals a day. I hope they have dining facilities too but would love > > it if > > > there were a Burger King within easy > > > > distance..LOL The patient representative said that I could be > > there 7 > > > days. The key word is COULD so if I plan on the original 4 that > > they > > > first said what will happen to my return ticket? And if I get a > > return > > > ticket for 7 days what if they are thru with me in 4? This all > > seems so > > > complicated. And this telephone tag is aggravating. She leaves me a > > > message that says " Call me as soon as possible " and I do and all I > > get > > > is an answering machine that says she will get back to me in 24-48 > > > hours...well, she never gets back to me in 24 and then there is the > > > whole weekend and then when Monday comes I have things I have to > > do! I > > > have to run around and get the tests results sent and they are in > > more > > > then one facility! I also have my exercise class and Usually need > > to go > > > shopping...I can't just sit at home and wait not knowing when they > > will > > > call. They asked me for my cell phone number which I called and > > gave her > > > (leaving it on her voice mail which she said would > > > > be fine) but she has never used it. I am so frustrated with The > > > Jewish I have to just forget about them and go about my business. > > > > > > > > Today is a bad day breathing wise for me and I don't know > > why....I > > > feel like I am not getting enough air and my chest feels " heavy " . > > I feel > > > like one of my dogs is sitting on my chest....does that make sense? > > > BlueFlyer JOyce AZ IPF 11-08 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Bruce thanks, yes i was planning alone.. would be great if my girls would come.. but right now i'll just be glad my one daughter finally said yes to going to a basketball game with me.. Not giving up on the trip yet though; just maybe i can convince one to go... patti,NJ > > > > > > > > From: JOYCE RUDY > > > > Subject: No oxygen and flying > > > > To: " Breathe-Support " > > > > Date: Sunday, February 1, 2009, 11:52 AM > > > > > > > > > > > > I'm still playing telephone tag with The Jewish Hospital and > > wonder > > > how long ahead that they make an appoointment. Does anyone know if > > it > > > will be weeks or months? > > > > > > > > I have decided to not take my oxygen with me on the plane. I am > > only > > > on 3 liters and the terminal is at sea level in Pheonix and I am > > at 5200 > > > feet at home so I should be all right walking thru the terminal > > and on > > > the plane, I am not moving so my need for oxygen will be little. I > > don't > > > know about Denver's terminal..how long it is, etc. but I think I > > can > > > make it. That will make things considerably easier for me > > traveling. The > > > Jewish Hospital said to contact them if you need oxygen and I > > will. I > > > have to cut expenses and if Medicare won't pay for it I won't take > > it. > > > It will all ready cost me about $200 aday with dog boarding, plane > > fair > > > and hotel and food expenses. I hope to be able to get into a motel > > or > > > hotel that has a shuttle and that should cut expenses a bit. Also, > > I > > > would like one that has Wifi and breakfast. I think I can make it > > on 2 > > > meals a day. I hope they have dining facilities too but would love > > it if > > > there were a Burger King within easy > > > > distance..LOL The patient representative said that I could be > > there 7 > > > days. The key word is COULD so if I plan on the original 4 that > > they > > > first said what will happen to my return ticket? And if I get a > > return > > > ticket for 7 days what if they are thru with me in 4? This all > > seems so > > > complicated. And this telephone tag is aggravating. She leaves me a > > > message that says " Call me as soon as possible " and I do and all I > > get > > > is an answering machine that says she will get back to me in 24-48 > > > hours...well, she never gets back to me in 24 and then there is the > > > whole weekend and then when Monday comes I have things I have to > > do! I > > > have to run around and get the tests results sent and they are in > > more > > > then one facility! I also have my exercise class and Usually need > > to go > > > shopping...I can't just sit at home and wait not knowing when they > > will > > > call. They asked me for my cell phone number which I called and > > gave her > > > (leaving it on her voice mail which she said would > > > > be fine) but she has never used it. I am so frustrated with The > > > Jewish I have to just forget about them and go about my business. > > > > > > > > Today is a bad day breathing wise for me and I don't know > > why....I > > > feel like I am not getting enough air and my chest feels " heavy " . > > I feel > > > like one of my dogs is sitting on my chest....does that make sense? > > > BlueFlyer JOyce AZ IPF 11-08 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Bruce thanks, yes i was planning alone.. would be great if my girls would come.. but right now i'll just be glad my one daughter finally said yes to going to a basketball game with me.. Not giving up on the trip yet though; just maybe i can convince one to go... patti,NJ > > > > > > > > From: JOYCE RUDY > > > > Subject: No oxygen and flying > > > > To: " Breathe-Support " > > > > Date: Sunday, February 1, 2009, 11:52 AM > > > > > > > > > > > > I'm still playing telephone tag with The Jewish Hospital and > > wonder > > > how long ahead that they make an appoointment. Does anyone know if > > it > > > will be weeks or months? > > > > > > > > I have decided to not take my oxygen with me on the plane. I am > > only > > > on 3 liters and the terminal is at sea level in Pheonix and I am > > at 5200 > > > feet at home so I should be all right walking thru the terminal > > and on > > > the plane, I am not moving so my need for oxygen will be little. I > > don't > > > know about Denver's terminal..how long it is, etc. but I think I > > can > > > make it. That will make things considerably easier for me > > traveling. The > > > Jewish Hospital said to contact them if you need oxygen and I > > will. I > > > have to cut expenses and if Medicare won't pay for it I won't take > > it. > > > It will all ready cost me about $200 aday with dog boarding, plane > > fair > > > and hotel and food expenses. I hope to be able to get into a motel > > or > > > hotel that has a shuttle and that should cut expenses a bit. Also, > > I > > > would like one that has Wifi and breakfast. I think I can make it > > on 2 > > > meals a day. I hope they have dining facilities too but would love > > it if > > > there were a Burger King within easy > > > > distance..LOL The patient representative said that I could be > > there 7 > > > days. The key word is COULD so if I plan on the original 4 that > > they > > > first said what will happen to my return ticket? And if I get a > > return > > > ticket for 7 days what if they are thru with me in 4? This all > > seems so > > > complicated. And this telephone tag is aggravating. She leaves me a > > > message that says " Call me as soon as possible " and I do and all I > > get > > > is an answering machine that says she will get back to me in 24-48 > > > hours...well, she never gets back to me in 24 and then there is the > > > whole weekend and then when Monday comes I have things I have to > > do! I > > > have to run around and get the tests results sent and they are in > > more > > > then one facility! I also have my exercise class and Usually need > > to go > > > shopping...I can't just sit at home and wait not knowing when they > > will > > > call. They asked me for my cell phone number which I called and > > gave her > > > (leaving it on her voice mail which she said would > > > > be fine) but she has never used it. I am so frustrated with The > > > Jewish I have to just forget about them and go about my business. > > > > > > > > Today is a bad day breathing wise for me and I don't know > > why....I > > > feel like I am not getting enough air and my chest feels " heavy " . > > I feel > > > like one of my dogs is sitting on my chest....does that make sense? > > > BlueFlyer JOyce AZ IPF 11-08 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2009 Report Share Posted February 15, 2009 Patti Hope your daughter is ok Pink Joyce IPF 3/06 Pennsylvania Donate Life Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2009 Report Share Posted February 15, 2009 Joyce thanks they still have no idea what is causing it; one says it is not a viral infection and the other it is.. Poor thing was started on 60mg of prednisone tonight and will have 40mg daily for next 5 days.. thank you; the numbness has me more concerned;and the swelling of her throat. patti NJ > > Patti > Hope your daughter is ok > > > Pink Joyce IPF 3/06  Pennsylvania > Donate Life > Quote Link to comment Share on other sites More sharing options...
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