Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 ... you have really had to deal with some heavy "stuff" haven't you. I'm so sorry. Even when it's "their" fault you still paid the price of no services! I do hope it's all ok now. So what did they tell you in ER about not being able to breathe? Was that "the lungs dealing with their ordeal"? Are you on O2? Doesn't sound like it...will you have Rx for O2 now??? I hope services will help you to feel better quickly. Hang in there... MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! HAPPY FORTH GROUP..... BAM, BOOM, BOOM Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." Need to know now? Get instant answers with Windows Live Messenger. IM on your terms. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 ... you have really had to deal with some heavy "stuff" haven't you. I'm so sorry. Even when it's "their" fault you still paid the price of no services! I do hope it's all ok now. So what did they tell you in ER about not being able to breathe? Was that "the lungs dealing with their ordeal"? Are you on O2? Doesn't sound like it...will you have Rx for O2 now??? I hope services will help you to feel better quickly. Hang in there... MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! HAPPY FORTH GROUP..... BAM, BOOM, BOOM Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." Need to know now? Get instant answers with Windows Live Messenger. IM on your terms. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 Hi MamaShar! well they said my lungs got really tight (?) and the chest pains or cramps are from over exertion they put to me like if i use any mussle to much it will cramp and ache. what i dont know is the names of things, they did put some thing over my nose and mouth 2x the inhalers i had been using dont give the same relief that this stuff gives it may be the same s stuff but feels so much better than my inhalers. they gave me a script for prednisone 60mg a day due to holiday and weekend i have to call my dr until monday for followup and press to see this lung spiecalist. thank you for caring. no o2 and i actually dont know if they updated my CMS case yet.................God this is horrible, mamashar, that sofication, I dont want to die like that its just horrible. With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~ To: Breathe-Support From: bofus@...Date: Fri, 4 Jul 2008 16:47:45 -0700Subject: Re: sorry i missed chat ... you have really had to deal with some heavy "stuff" haven't you. I'm so sorry. Even when it's "their" fault you still paid the price of no services! I do hope it's all ok now. So what did they tell you in ER about not being able to breathe? Was that "the lungs dealing with their ordeal"? Are you on O2? Doesn't sound like it...will you have Rx for O2 now??? I hope services will help you to feel better quickly. Hang in there... MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! HAPPY FORTH GROUP..... BAM, BOOM, BOOM Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." Need to know now? Get instant answers with Windows Live Messenger. IM on your terms. Need to know now? Get instant answers with Windows Live Messenger. IM on your terms. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 , Have you been tested for Pulmonary Hypertension. These symptoms are common to that disease. PH is common to Pulmonary Fibrosis. I pray that you can recieve better medical care. This is scary enough with good care. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> > I believe I have progressed to another stage of this lung thing. I had to call 9 11, I couldnt catch a breath, it was the suffication that when I think of it takes me back to tears I was so scared? I have gone thru not catching my breath, usually I can concentrate on my body to calm? myself to a point where i can think out my breaths, even when ive gotten to the dizzy stage. but finally as it went on I knew if i didnt reach my front door i dont even know how the phone got to my hand or i could even see the numbers to call.........who cares thank God! they came and took me to emergency. they gave me a few things plus 60mg of prednisone.....I didnt want to take that any more, but if i knew how to care for me i probably wouldnt be in this state. The chest pains are more painful and constant as ever, they said theres nothing they could give me for that , it was my lungs dealing with theyre ordeal. lol. CMS finally okayed my services july 1.AND WOULDNT YOU KNOW IT i also recieved my birth certificate that social security admin said they mailed back to me QUOTE; "we send back all documents! we recieve them, copy them and return them promptly" -(I was there in Feb.w/documents they requested)they returned them june 30 my cms appt was june 20th because i had no birth cert. I was denied,it left me without medical care or medication i went to the ssa office on the june 20th as i needed to see the lung spiecalist-and asked them no i begged them to please look thru my file....they refused,ive had no medical until last night.> > With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~> > To: Breathe-Support@...: pac1773@...: Fri, 4 Jul 2008 00:05:49 -0400Subject: HAPPY FORTH GROUP..... BAM, BOOM, BOOM> > Love and Prayers, Peggy > IPF 2004, Florida> > > "Worry looks around,> Sorry looks back,> Faith looks up."> > _________________________________________________________________> Need to know now? Get instant answers with Windows Live Messenger.> http://www.windowslive.com/messenger/connect_your_way.html?ocid=TXT_TAGLM_WL_messenger_072008> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 , Have you been tested for Pulmonary Hypertension. These symptoms are common to that disease. PH is common to Pulmonary Fibrosis. I pray that you can recieve better medical care. This is scary enough with good care. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> > I believe I have progressed to another stage of this lung thing. I had to call 9 11, I couldnt catch a breath, it was the suffication that when I think of it takes me back to tears I was so scared? I have gone thru not catching my breath, usually I can concentrate on my body to calm? myself to a point where i can think out my breaths, even when ive gotten to the dizzy stage. but finally as it went on I knew if i didnt reach my front door i dont even know how the phone got to my hand or i could even see the numbers to call.........who cares thank God! they came and took me to emergency. they gave me a few things plus 60mg of prednisone.....I didnt want to take that any more, but if i knew how to care for me i probably wouldnt be in this state. The chest pains are more painful and constant as ever, they said theres nothing they could give me for that , it was my lungs dealing with theyre ordeal. lol. CMS finally okayed my services july 1.AND WOULDNT YOU KNOW IT i also recieved my birth certificate that social security admin said they mailed back to me QUOTE; "we send back all documents! we recieve them, copy them and return them promptly" -(I was there in Feb.w/documents they requested)they returned them june 30 my cms appt was june 20th because i had no birth cert. I was denied,it left me without medical care or medication i went to the ssa office on the june 20th as i needed to see the lung spiecalist-and asked them no i begged them to please look thru my file....they refused,ive had no medical until last night.> > With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~> > To: Breathe-Support@...: pac1773@...: Fri, 4 Jul 2008 00:05:49 -0400Subject: HAPPY FORTH GROUP..... BAM, BOOM, BOOM> > Love and Prayers, Peggy > IPF 2004, Florida> > > "Worry looks around,> Sorry looks back,> Faith looks up."> > _________________________________________________________________> Need to know now? Get instant answers with Windows Live Messenger.> http://www.windowslive.com/messenger/connect_your_way.html?ocid=TXT_TAGLM_WL_messenger_072008> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 , Have you been tested for Pulmonary Hypertension. These symptoms are common to that disease. PH is common to Pulmonary Fibrosis. I pray that you can recieve better medical care. This is scary enough with good care. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> > I believe I have progressed to another stage of this lung thing. I had to call 9 11, I couldnt catch a breath, it was the suffication that when I think of it takes me back to tears I was so scared? I have gone thru not catching my breath, usually I can concentrate on my body to calm? myself to a point where i can think out my breaths, even when ive gotten to the dizzy stage. but finally as it went on I knew if i didnt reach my front door i dont even know how the phone got to my hand or i could even see the numbers to call.........who cares thank God! they came and took me to emergency. they gave me a few things plus 60mg of prednisone.....I didnt want to take that any more, but if i knew how to care for me i probably wouldnt be in this state. The chest pains are more painful and constant as ever, they said theres nothing they could give me for that , it was my lungs dealing with theyre ordeal. lol. CMS finally okayed my services july 1.AND WOULDNT YOU KNOW IT i also recieved my birth certificate that social security admin said they mailed back to me QUOTE; "we send back all documents! we recieve them, copy them and return them promptly" -(I was there in Feb.w/documents they requested)they returned them june 30 my cms appt was june 20th because i had no birth cert. I was denied,it left me without medical care or medication i went to the ssa office on the june 20th as i needed to see the lung spiecalist-and asked them no i begged them to please look thru my file....they refused,ive had no medical until last night.> > With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~> > To: Breathe-Support@...: pac1773@...: Fri, 4 Jul 2008 00:05:49 -0400Subject: HAPPY FORTH GROUP..... BAM, BOOM, BOOM> > Love and Prayers, Peggy > IPF 2004, Florida> > > "Worry looks around,> Sorry looks back,> Faith looks up."> > _________________________________________________________________> Need to know now? Get instant answers with Windows Live Messenger.> http://www.windowslive.com/messenger/connect_your_way.html?ocid=TXT_TAGLM_WL_messenger_072008> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 no I havent BUT WILL! Pulmonary hyper... gosh do they test for certain things as symtoms come up? they did give me a list of things not to do, like go out o n high polution days....or go around peeps with colds or coughs........am I one symtom from being a shut in!!!!!!!!! lol not funny, sorry i have had to take this inhaler e every 2 hours for a couple of 24 hr days, i get alittle loopy without sleep. thank you for caring. With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~ To: Breathe-Support From: jdalton501@...Date: Sat, 5 Jul 2008 01:59:50 +0000Subject: Re: sorry i missed chat , Have you been tested for Pulmonary Hypertension. These symptoms are common to that disease. PH is common to Pulmonary Fibrosis. I pray that you can recieve better medical care. This is scary enough with good care. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> > I believe I have progressed to another stage of this lung thing. I had to call 9 11, I couldnt catch a breath, it was the suffication that when I think of it takes me back to tears I was so scared? I have gone thru not catching my breath, usually I can concentrate on my body to calm? myself to a point where i can think out my breaths, even when ive gotten to the dizzy stage. but finally as it went on I knew if i didnt reach my front door i dont even know how the phone got to my hand or i could even see the numbers to call.........who cares thank God! they came and took me to emergency. they gave me a few things plus 60mg of prednisone.....I didnt want to take that any more, but if i knew how to care for me i probably wouldnt be in this state. The chest pains are more painful and constant as ever, they said theres nothing they could give me for that , it was my lungs dealing with theyre ordeal. lol. CMS finally okayed my services july 1.AND WOULDNT YOU KNOW IT i also recieved my birth certificate that social security admin said they mailed back to me QUOTE; "we send back all documents! we recieve them, copy them and return them promptly" -(I was there in Feb.w/documents they requested)they returned them june 30 my cms appt was june 20th because i had no birth cert. I was denied,it left me without medical care or medication i went to the ssa office on the june 20th as i needed to see the lung spiecalist-and asked them no i begged them to please look thru my file....they refused,ive had no medical until last night.> > With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~> > To: Breathe-Support@...: pac1773@...: Fri, 4 Jul 2008 00:05:49 -0400Subject: HAPPY FORTH GROUP..... BAM, BOOM, BOOM> > Love and Prayers, Peggy > IPF 2004, Florida> > > "Worry looks around,> Sorry looks back,> Faith looks up."> > _________________________________________________________________> Need to know now? Get instant answers with Windows Live Messenger.> http://www.windowslive.com/messenger/connect_your_way.html?ocid=TXT_TAGLM_WL_messenger_072008> It’s a talkathon – but it’s not just talk. Check out the i’m Talkathon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 no I havent BUT WILL! Pulmonary hyper... gosh do they test for certain things as symtoms come up? they did give me a list of things not to do, like go out o n high polution days....or go around peeps with colds or coughs........am I one symtom from being a shut in!!!!!!!!! lol not funny, sorry i have had to take this inhaler e every 2 hours for a couple of 24 hr days, i get alittle loopy without sleep. thank you for caring. With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~ To: Breathe-Support From: jdalton501@...Date: Sat, 5 Jul 2008 01:59:50 +0000Subject: Re: sorry i missed chat , Have you been tested for Pulmonary Hypertension. These symptoms are common to that disease. PH is common to Pulmonary Fibrosis. I pray that you can recieve better medical care. This is scary enough with good care. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> > I believe I have progressed to another stage of this lung thing. I had to call 9 11, I couldnt catch a breath, it was the suffication that when I think of it takes me back to tears I was so scared? I have gone thru not catching my breath, usually I can concentrate on my body to calm? myself to a point where i can think out my breaths, even when ive gotten to the dizzy stage. but finally as it went on I knew if i didnt reach my front door i dont even know how the phone got to my hand or i could even see the numbers to call.........who cares thank God! they came and took me to emergency. they gave me a few things plus 60mg of prednisone.....I didnt want to take that any more, but if i knew how to care for me i probably wouldnt be in this state. The chest pains are more painful and constant as ever, they said theres nothing they could give me for that , it was my lungs dealing with theyre ordeal. lol. CMS finally okayed my services july 1.AND WOULDNT YOU KNOW IT i also recieved my birth certificate that social security admin said they mailed back to me QUOTE; "we send back all documents! we recieve them, copy them and return them promptly" -(I was there in Feb.w/documents they requested)they returned them june 30 my cms appt was june 20th because i had no birth cert. I was denied,it left me without medical care or medication i went to the ssa office on the june 20th as i needed to see the lung spiecalist-and asked them no i begged them to please look thru my file....they refused,ive had no medical until last night.> > With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~> > To: Breathe-Support@...: pac1773@...: Fri, 4 Jul 2008 00:05:49 -0400Subject: HAPPY FORTH GROUP..... BAM, BOOM, BOOM> > Love and Prayers, Peggy > IPF 2004, Florida> > > "Worry looks around,> Sorry looks back,> Faith looks up."> > _________________________________________________________________> Need to know now? Get instant answers with Windows Live Messenger.> http://www.windowslive.com/messenger/connect_your_way.html?ocid=TXT_TAGLM_WL_messenger_072008> It’s a talkathon – but it’s not just talk. Check out the i’m Talkathon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 no I havent BUT WILL! Pulmonary hyper... gosh do they test for certain things as symtoms come up? they did give me a list of things not to do, like go out o n high polution days....or go around peeps with colds or coughs........am I one symtom from being a shut in!!!!!!!!! lol not funny, sorry i have had to take this inhaler e every 2 hours for a couple of 24 hr days, i get alittle loopy without sleep. thank you for caring. With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~ To: Breathe-Support From: jdalton501@...Date: Sat, 5 Jul 2008 01:59:50 +0000Subject: Re: sorry i missed chat , Have you been tested for Pulmonary Hypertension. These symptoms are common to that disease. PH is common to Pulmonary Fibrosis. I pray that you can recieve better medical care. This is scary enough with good care. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> > I believe I have progressed to another stage of this lung thing. I had to call 9 11, I couldnt catch a breath, it was the suffication that when I think of it takes me back to tears I was so scared? I have gone thru not catching my breath, usually I can concentrate on my body to calm? myself to a point where i can think out my breaths, even when ive gotten to the dizzy stage. but finally as it went on I knew if i didnt reach my front door i dont even know how the phone got to my hand or i could even see the numbers to call.........who cares thank God! they came and took me to emergency. they gave me a few things plus 60mg of prednisone.....I didnt want to take that any more, but if i knew how to care for me i probably wouldnt be in this state. The chest pains are more painful and constant as ever, they said theres nothing they could give me for that , it was my lungs dealing with theyre ordeal. lol. CMS finally okayed my services july 1.AND WOULDNT YOU KNOW IT i also recieved my birth certificate that social security admin said they mailed back to me QUOTE; "we send back all documents! we recieve them, copy them and return them promptly" -(I was there in Feb.w/documents they requested)they returned them june 30 my cms appt was june 20th because i had no birth cert. I was denied,it left me without medical care or medication i went to the ssa office on the june 20th as i needed to see the lung spiecalist-and asked them no i begged them to please look thru my file....they refused,ive had no medical until last night.> > With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~> > To: Breathe-Support@...: pac1773@...: Fri, 4 Jul 2008 00:05:49 -0400Subject: HAPPY FORTH GROUP..... BAM, BOOM, BOOM> > Love and Prayers, Peggy > IPF 2004, Florida> > > "Worry looks around,> Sorry looks back,> Faith looks up."> > _________________________________________________________________> Need to know now? Get instant answers with Windows Live Messenger.> http://www.windowslive.com/messenger/connect_your_way.html?ocid=TXT_TAGLM_WL_messenger_072008> It’s a talkathon – but it’s not just talk. Check out the i’m Talkathon. Quote Link to comment Share on other sites More sharing options...
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