Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Hi Sunny, Back in Nov 06 after I was diagnosed with IPF my pulmo doctor said I didn't need an oximeter. I ignored him based and got one on line. When my O2 dropped I knew to sit and rest. I had been misdiagnosed for possibly 10 years & was already in the end stage of IPF.:-( He had me start pulmonary rehab in Jan 07 & first test was a 6 min walk which they said nobody failed. They stopped me after 2 min as my O2 had dropped below 83, called my primary doctor (around 3 p.m.) and shortly after I got home the Oxygen provider showed up at my house. In Feb 07 I was recommended for a transplant, tested between April and June, made the list Aug 13 & got the transplant Aug. 22, 2007. I have been vacationing here in HI (one of my 3 sons and his family lives here) since Easter, April 12 & doing my physical therapy exercises in the ocean every day which is making my legs stronger. My WBC had fallen to critically low 0.6 on March 3 and was tested every week before I flkew here & was back up to 4.0. This week it was tested and is 7.8. :-) Good luck and if you have to tell your pulmo if he cannot care for you that you will find one who will. Aloha, Judy IPF 11/06 TX 8/07 > > Sunny, > The oximeter that Jack ordered for you is approved by the FDA for medical use. That means that it has to meet the same standards for accuracy that the oximeter in your pulmo's office does. Your current pulmo has what many would call a " proprietory " attitude, meaning that he wants to be in absolute control of any information you have regarding your lung disease. A more enlightened physician would encourage you to learn as much about your own illness and your bodies response to it as possible. I'm sorry you are having to deal with this. > > Good luck at your appointment tomorrow. If you can holler at him and insist that he order a 24 hour oximeter, I believe the results will be very telling. I mean he hasn't even done a 6 minute walk with you. A couple of laps around a desk do not a 6 minute walk make. Oh Sunny I " m so frustrated for you. Keep fighting, your life is worth it! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: " rpickel1@... " > To: Breathe-Support > Sent: Wednesday, April 22, 2009 7:52:45 PM > Subject: Re: Sunny > > > > > > Sher, I showed him the oximeter that Jack had sent to me. He said " those things are notoriously unreliable " and not to put any stock in what it says. I am going to see pulmo guy tomorrow and then I am going to call Kootenai Medical Center and find another Pulmo guy. I am getting very concerned about how dizzy and fatigued I am. I agree with Beth, I need a new Pulmo guy. Either mine's too busy or he doesn't take me serious because of my stress issues which are caused from being in pain for four years. Sometimes it just feels like my life ended when they said Lupus. After that it's been 8 surgeries, Sjogrens, diabetes, etc.... Not to mention we spend $600 in meds every month. We have insurance but we have to pay up front then wait 60 days to get reimbursed. Four years ago I was a productive member of society with a high level, high paying job that I loved now I am just a lump on a log. I was widowed at 25 with three little girls. > Put myself through college while working two jobs so I could give them all the things I never had. Not once did I ask or get help from the government now they act like I'm a scam artist or something because I want my SSDI. Isn't it my money that I paid in all those years. I guess I should just be thankful that all of this happened after my girls were grown and I had married the greatest guy on earth. Why is it that medical doctors don't understand what constant pain does to a person but psyc doc does. Between the auto immune junk, joint pain and swelling, pulse and O2 problems, fatigue and side effects from pills, etc... it's enough to make you want to strangle yourself. Oh well, didn't someone say there would be days like this? I just checked and my what hair I have left looks awesome today so that's something and my little toe on my left foot is pain free. Always something to thank my Lord for. > So Sher, did I tell you I am from Oklahoma. That explains a lot huh? So here are the latest Okie jokes told to me this week. > > Okie is standing on one side of the river and looks over and sees another Okie on the other side so he hollars over " Hey, how do I get to the other side? " Second Okie hollars back, " Duh, you are on the other side. " > > What do you call pallbearers at an Okie funeral? Kariokes > > State Trooper stops an Okie, walks up to the window and says " You got any ID? " Okie says id about what? > > There you go, my lame humor for today and I cheered myself up because I realized I now live in Idaho (state motto " We got rocks. " ) and not Oklahoma (state motto " We got dirt. " ) > > Sunny > > > From: Sher Bauman > Sent: Wednesday, April 22, 2009 4:25 PM > To: Breathe-Support@ yahoogroups. com > Subject: Re: Sunny > > Maybe doc meant the finger oximeter would be unreliable for a 24 hr.test .That requires a bit different thingy. > Sunny, the majority of the board will no doubt agree with MB here...consider what she says... > > MamaSher; 70, IPF 3-06, OR. > Nasturtiums > Don't fret about tomorrow, God is already there! > > Hi Sher > > Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old), > with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa. > > My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. > > What has been going on with you? You have usually been the " rock " of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when. > Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. > Hope you get better and back to posting!!!!! !!!! > G. UIP/ IPF 5/07 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Hi Sunny, Back in Nov 06 after I was diagnosed with IPF my pulmo doctor said I didn't need an oximeter. I ignored him based and got one on line. When my O2 dropped I knew to sit and rest. I had been misdiagnosed for possibly 10 years & was already in the end stage of IPF.:-( He had me start pulmonary rehab in Jan 07 & first test was a 6 min walk which they said nobody failed. They stopped me after 2 min as my O2 had dropped below 83, called my primary doctor (around 3 p.m.) and shortly after I got home the Oxygen provider showed up at my house. In Feb 07 I was recommended for a transplant, tested between April and June, made the list Aug 13 & got the transplant Aug. 22, 2007. I have been vacationing here in HI (one of my 3 sons and his family lives here) since Easter, April 12 & doing my physical therapy exercises in the ocean every day which is making my legs stronger. My WBC had fallen to critically low 0.6 on March 3 and was tested every week before I flkew here & was back up to 4.0. This week it was tested and is 7.8. :-) Good luck and if you have to tell your pulmo if he cannot care for you that you will find one who will. Aloha, Judy IPF 11/06 TX 8/07 > > Sunny, > The oximeter that Jack ordered for you is approved by the FDA for medical use. That means that it has to meet the same standards for accuracy that the oximeter in your pulmo's office does. Your current pulmo has what many would call a " proprietory " attitude, meaning that he wants to be in absolute control of any information you have regarding your lung disease. A more enlightened physician would encourage you to learn as much about your own illness and your bodies response to it as possible. I'm sorry you are having to deal with this. > > Good luck at your appointment tomorrow. If you can holler at him and insist that he order a 24 hour oximeter, I believe the results will be very telling. I mean he hasn't even done a 6 minute walk with you. A couple of laps around a desk do not a 6 minute walk make. Oh Sunny I " m so frustrated for you. Keep fighting, your life is worth it! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: " rpickel1@... " > To: Breathe-Support > Sent: Wednesday, April 22, 2009 7:52:45 PM > Subject: Re: Sunny > > > > > > Sher, I showed him the oximeter that Jack had sent to me. He said " those things are notoriously unreliable " and not to put any stock in what it says. I am going to see pulmo guy tomorrow and then I am going to call Kootenai Medical Center and find another Pulmo guy. I am getting very concerned about how dizzy and fatigued I am. I agree with Beth, I need a new Pulmo guy. Either mine's too busy or he doesn't take me serious because of my stress issues which are caused from being in pain for four years. Sometimes it just feels like my life ended when they said Lupus. After that it's been 8 surgeries, Sjogrens, diabetes, etc.... Not to mention we spend $600 in meds every month. We have insurance but we have to pay up front then wait 60 days to get reimbursed. Four years ago I was a productive member of society with a high level, high paying job that I loved now I am just a lump on a log. I was widowed at 25 with three little girls. > Put myself through college while working two jobs so I could give them all the things I never had. Not once did I ask or get help from the government now they act like I'm a scam artist or something because I want my SSDI. Isn't it my money that I paid in all those years. I guess I should just be thankful that all of this happened after my girls were grown and I had married the greatest guy on earth. Why is it that medical doctors don't understand what constant pain does to a person but psyc doc does. Between the auto immune junk, joint pain and swelling, pulse and O2 problems, fatigue and side effects from pills, etc... it's enough to make you want to strangle yourself. Oh well, didn't someone say there would be days like this? I just checked and my what hair I have left looks awesome today so that's something and my little toe on my left foot is pain free. Always something to thank my Lord for. > So Sher, did I tell you I am from Oklahoma. That explains a lot huh? So here are the latest Okie jokes told to me this week. > > Okie is standing on one side of the river and looks over and sees another Okie on the other side so he hollars over " Hey, how do I get to the other side? " Second Okie hollars back, " Duh, you are on the other side. " > > What do you call pallbearers at an Okie funeral? Kariokes > > State Trooper stops an Okie, walks up to the window and says " You got any ID? " Okie says id about what? > > There you go, my lame humor for today and I cheered myself up because I realized I now live in Idaho (state motto " We got rocks. " ) and not Oklahoma (state motto " We got dirt. " ) > > Sunny > > > From: Sher Bauman > Sent: Wednesday, April 22, 2009 4:25 PM > To: Breathe-Support@ yahoogroups. com > Subject: Re: Sunny > > Maybe doc meant the finger oximeter would be unreliable for a 24 hr.test .That requires a bit different thingy. > Sunny, the majority of the board will no doubt agree with MB here...consider what she says... > > MamaSher; 70, IPF 3-06, OR. > Nasturtiums > Don't fret about tomorrow, God is already there! > > Hi Sher > > Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old), > with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa. > > My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. > > What has been going on with you? You have usually been the " rock " of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when. > Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. > Hope you get better and back to posting!!!!! !!!! > G. UIP/ IPF 5/07 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 I DO NOT agree w/doc who says this oximeter is unreliable....it's FDA approved! (There are others that are not and they are mostly used by runners, exercise folks, etc that don't need the accuracy.) One way to be sure for your own peace of mind is check it out at the next medical place you go. It will probably be about one number off. Jack's heart is so big. Good for him to see that members who want one, get one. If it makes you feel better, go to www.portablenebs.com and check it out. If it's the same one as there, the yellow one that's FDA approved (and I'm sure it will be) then just tell your doc that you respectfully disagree w/him! Yes, you should be checking out the dizziness/fatigue. It could well be meds but you won't know until you let doc know. Can you see online or on the printout you get when a Rx is filled, what the side effects can be? Or, a combo of meds might cause that too but get it checked for sure Sunny. Oh I do know how you feel...I've dealt w/chronic pain for more years now then I can remember. I understand how pain whips us down, mentally and physically. My mother/grmother had Lupus and I keep a watch on it for me as well. Our medical last year cost us 12k! out of pocket. That was after copays. Right now I'm paying 100% of Rx, trying to meet the deductible while paying the premium each month too. Double it all, Rich has the same thing but not as many Rx as I. It was about 5 years ago for me, that I was 'productive' and 'doing things' but we'll not be lumps on logs Sunny. Let's refuse. We still have value, worth and dignity and 'taint nothin' will ever take that from us. I'm just pulling out of a very very ill period...now I see I was over medicated! Right under the docs noses! All Rx, all used as directed. Lou just went through a period of this same thing....I know we have to advocate for ourselves but truly, sometimes I lose the energy to 'keep watch.' I lived in Longview TX for many years so I like Okies. ;o) I like the river joke...I've heard it before...must have been when I was in TX. ;o) Hang on, there are others who get pooped out too.... now THAT'S another story but I'll let it be.......... tee hee MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Hi Sher Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old), with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa. My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. What has been going on with you? You have usually been the "rock" of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when. Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. Hope you get better and back to posting!!!!! !!!! G. UIP/ IPF 5/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 I DO NOT agree w/doc who says this oximeter is unreliable....it's FDA approved! (There are others that are not and they are mostly used by runners, exercise folks, etc that don't need the accuracy.) One way to be sure for your own peace of mind is check it out at the next medical place you go. It will probably be about one number off. Jack's heart is so big. Good for him to see that members who want one, get one. If it makes you feel better, go to www.portablenebs.com and check it out. If it's the same one as there, the yellow one that's FDA approved (and I'm sure it will be) then just tell your doc that you respectfully disagree w/him! Yes, you should be checking out the dizziness/fatigue. It could well be meds but you won't know until you let doc know. Can you see online or on the printout you get when a Rx is filled, what the side effects can be? Or, a combo of meds might cause that too but get it checked for sure Sunny. Oh I do know how you feel...I've dealt w/chronic pain for more years now then I can remember. I understand how pain whips us down, mentally and physically. My mother/grmother had Lupus and I keep a watch on it for me as well. Our medical last year cost us 12k! out of pocket. That was after copays. Right now I'm paying 100% of Rx, trying to meet the deductible while paying the premium each month too. Double it all, Rich has the same thing but not as many Rx as I. It was about 5 years ago for me, that I was 'productive' and 'doing things' but we'll not be lumps on logs Sunny. Let's refuse. We still have value, worth and dignity and 'taint nothin' will ever take that from us. I'm just pulling out of a very very ill period...now I see I was over medicated! Right under the docs noses! All Rx, all used as directed. Lou just went through a period of this same thing....I know we have to advocate for ourselves but truly, sometimes I lose the energy to 'keep watch.' I lived in Longview TX for many years so I like Okies. ;o) I like the river joke...I've heard it before...must have been when I was in TX. ;o) Hang on, there are others who get pooped out too.... now THAT'S another story but I'll let it be.......... tee hee MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Hi Sher Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old), with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa. My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. What has been going on with you? You have usually been the "rock" of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when. Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. Hope you get better and back to posting!!!!! !!!! G. UIP/ IPF 5/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 Jack, I remember the Texas boys high tailin' it over our county line to our liquor store. I believe that's where I met my first husband - wait no that was at the pond during 7th grade summer break. Hmm must have been my second - nope met him in the delivery room havin' my first. Well then heck he must have been my third cause the fourth husband I know I met at the drive-in pikture show. That was corse after I graduated 10th grade with my third baby on my hip. Sure do miss Oklahoma! Left for Texas after school, traveled with a country band all the way to San Diego then quit and went to UCLA to get a degree. Moved up to the Northwest to get away from the crime and filth. And what do you know, the Northwest is just about the same as Oklahoma. Now I find that I love it. Just goes to show you. Sunny From: Barbara McD Sent: Thursday, April 23, 2009 8:09 AM To: Breathe-Support Subject: Re: Sunny I love it! B Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 From: Jack Marshall <mrshlljck (AT) yahoo (DOT) com>To: Breathe-Support Sent: Thursday, April 23, 2009 10:08:55 AMSubject: Re: Sunny Sunny, your comments about Okie and the other side reminded me of when I was a teenager - yes, I really was one once, but there are people around here that think I still am . I was born in Oklahome City, but my folks moved back to Texas when I was about 8. The county we lived in was dry - meaning no alcohol could be sold. The teen boys and the drunks would drive up north to Red River late at night. They parked facing the river and blinked the lights in codes to indicate what they wanted. Over rowed an Okie with the goods which he exchanged for the money, and he was always quick to get back to his side. I have other Okie/Texas stories but they are too dirty to post. Jack79/IPF - UIP/dx06/05 Maine From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, April 22, 2009 7:52:45 PMSubject: Re: Sunny Sher, I showed him the oximeter that Jack had sent to me. He said "those things are notoriously unreliable" and not to put any stock in what it says. I am going to see pulmo guy tomorrow and then I am going to call Kootenai Medical Center and find another Pulmo guy. I am getting very concerned about how dizzy and fatigued I am. I agree with Beth, I need a new Pulmo guy. Either mine's too busy or he doesn't take me serious because of my stress issues which are caused from being in pain for four years. Sometimes it just feels like my life ended when they said Lupus. After that it's been 8 surgeries, Sjogrens, diabetes, etc.... Not to mention we spend $600 in meds every month. We have insurance but we have to pay up front then wait 60 days to get reimbursed. Four years ago I was a productive member of society with a high level, high paying job that I loved now I am just a lump on a log. I was widowed at 25 with three little girls. Put myself through college while working two jobs so I could give them all the things I never had. Not once did I ask or get help from the government now they act like I'm a scam artist or something because I want my SSDI. Isn't it my money that I paid in all those years. I guess I should just be thankful that all of this happened after my girls were grown and I had married the greatest guy on earth. Why is it that medical doctors don't understand what constant pain does to a person but psyc doc does. Between the auto immune junk, joint pain and swelling, pulse and O2 problems, fatigue and side effects from pills, etc... it's enough to make you want to strangle yourself. Oh well, didn't someone say there would be days like this? I just checked and my what hair I have left looks awesome today so that's something and my little toe on my left foot is pain free. Always something to thank my Lord for. So Sher, did I tell you I am from Oklahoma. That explains a lot huh? So here are the latest Okie jokes told to me this week. Okie is standing on one side of the river and looks over and sees another Okie on the other side so he hollars over "Hey, how do I get to the other side?" Second Okie hollars back, "Duh, you are on the other side." What do you call pallbearers at an Okie funeral? Kariokes State Trooper stops an Okie, walks up to the window and says "You got any ID?" Okie says id about what? There you go, my lame humor for today and I cheered myself up because I realized I now live in Idaho (state motto "We got rocks.") and not Oklahoma (state motto "We got dirt.") Sunny From: Sher Bauman Sent: Wednesday, April 22, 2009 4:25 PM To: Breathe-Support@ yahoogroups. com Subject: Re: Sunny Maybe doc meant the finger oximeter would be unreliable for a 24 hr.test .That requires a bit different thingy. Sunny, the majority of the board will no doubt agree with MB here...consider what she says... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Hi Sher Sorry to hear you have been so sick. I did notice that you hadn't been posting and I mentioned it to my wife, but we have had my son, DIL, and 2 grandkids (2 & 5 yrs. old), with us for the last 12 days and I haven't been on the computer other that 10 minutes, 3 different days. My butt is dragging trying to be involved in the activities and I do feel very tired all the time----only three more days and they will be going back to Olympia, Wa. My last visit to the Dr. (April 6th) I did my PFTs and everything is exactly the same except for my DLCO---it has dropped from 55% down to 49%. In the last 10 months it has dropped from 68% to 49%, so needless to say it is starting to make me nervous. What has been going on with you? You have usually been the "rock" of the group? Hope everything is OK and we can contribute it to the weather? I did hear you talking about going to the U of W medical hospital for an evaluation? I just talked to my Dr about checking at the U of W for a transplant evaluation, so I may go there also, but I don't know when. Tell Rich hi and hopefully I will be making the trip up to Washington again and I can meet up with you guys again. Hope you get better and back to posting!!!!! !!!! G. UIP/ IPF 5/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2009 Report Share Posted April 25, 2009 Sunny, it sounds like your pulmo doc wants to be rid of you and I really hope that you never go back to him. Send me a personal e-mail with your phone number and I will call you. I'll also let everyone know what my pulmo has to say to me Thursday. I never get any records but today I got the notice from Medicare that tells what they paid for and it sounds like he took all of the tests that he should have except maybe checking my blood sugar. I don't think that I should be on Prednisone and I feel worse now than when I was put on it. Beverley Joy IPF 09 Idaho Update after pulmo doc - hate to even call him a doctor Hi Everyone, Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it. Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2009 Report Share Posted April 25, 2009 Sunny, it sounds like your pulmo doc wants to be rid of you and I really hope that you never go back to him. Send me a personal e-mail with your phone number and I will call you. I'll also let everyone know what my pulmo has to say to me Thursday. I never get any records but today I got the notice from Medicare that tells what they paid for and it sounds like he took all of the tests that he should have except maybe checking my blood sugar. I don't think that I should be on Prednisone and I feel worse now than when I was put on it. Beverley Joy IPF 09 Idaho Update after pulmo doc - hate to even call him a doctor Hi Everyone, Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it. Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2009 Report Share Posted May 1, 2009 Sunny, maybe your prayers and any others who prayed for me worked. My house may be sold. I buy my NAC from Swanson's online. It may not be as good as some of the more expensive brands but it works for me. It it for the mucous. I was having it a lot before NAC now I hardly ever have it. Beverley Re: Good News Sher In one of your replys to either Caro or Ken, you had said that good news usually came in 3's. Ken was one, Caro two and now three!Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/GerdLady Slipper Orchid LEXOPHILES (LOVERS OF WORDS):1. A bicycle can't stand alone; it is two tired.2. A will is a dead giveaway.3. Time flies like an arrow; fruit flies like a banana.4. A backward poet writes inverse.5. In a democracy it's your vote that counts; in feudalism, it's your Count that votes.6. A chicken crossing the road: poultry in motion.7. If you don't pay your exorcist you can get repossessed.8. With her marriage she got a new name and a dress.9. Show me a piano falling down a mine shaft and I'll show you A-flat miner.10. When a clock is hungry it goes back four seconds.11. The guy who fell onto an upholstery machine was fully recovered.12. A grenade fell onto a kitchen floor in France resulted in Linoleum Blownapart.13. You are stuck with your debt if you can't budge it.14. Local Area Network in Australia : The LAN down under.15. He broke into song because he couldn't find the key.16. A calendar's days are numbered.17.. A lot of money is tainted: 'Taint yours, and 'taint mine.18. A boiled egg is hard to beat.19. He had a photographic memory which was never developed.20. A plateau is a high form of flattery.21. The short fortuneteller who escaped from prison: a small medium at large.22. Those who get too big for their britches will be exposed in the end.23. When you've seen one shopping center you've seen a mall.24. If you jump off a Paris bridge, you are in Seine.25. When she saw her first strands of gray hair, she thought she'd dye.26. Bakers trade bread recipes on a knead to know basis.27. Santa's helpers are subordinate clauses.28. Acupuncture: a jab well done.29. Marathon runners with bad shoes suffer the agony of de feet. 30. The roundest knight at king Arthur's round table was Sir Cumference.. He acquired his size from too much pi. 31. I thought I saw an eye doctor on an Alaskan island, but it turned out to be an optical Aleutian.32. She was only a whisky maker, but he loved her still.33. A rubber band pistol was confiscated from algebra class because it was a weapon of math disruption.34. The butcher backed into the meat grinder and got a little behind in his work.35. No matter how much you push the envelope, it'll still be stationery.36. A dog gave birth to puppies near the road and was cited for littering.37. Two silk worms had a race. They ended up in a tie.38. A hole has been found in the nudist camp wall. The police are looking into it.39. Atheism is a non-prophet organization.40. Two hats were hanging on a hat rack in the hallway. One hat said to the other, 'You stay here, I'll go on a head.'41. I wondered why the baseball kept getting bigger. Then it hit me.42. A sign on the lawn at a drug rehab center said: 'Keep off the Grass.'43. A small boy swallowed some coins and was taken to a hospital. When his grandmother telephoned to ask how he was, a nurse said, 'No change yet.'44. The soldier who survived mustard gas and pepper spray is now a seasoned veteran.45. When cannibals ate a missionary, they got a taste of religion.46. Don't join dangerous cults: Practice safe sects. Ken Baker (mostly lurker) UIP/IPF 12/05 New Hampshire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2009 Report Share Posted May 1, 2009 Go to www.puritan.com for NAC,,,, many here on the board purchase from them. Much cheaper. 3 x a day...600 mg. Some get stomach problems...I did. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Good News Sher In one of your replys to either Caro or Ken, you had said that good news usually came in 3's. Ken was one, Caro two and now three!Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/GerdLady Slipper Orchid LEXOPHILES (LOVERS OF WORDS):1. A bicycle can't stand alone; it is two tired.2. A will is a dead giveaway.3. Time flies like an arrow; fruit flies like a banana.4. A backward poet writes inverse.5. In a democracy it's your vote that counts; in feudalism, it's your Count that votes.6. A chicken crossing the road: poultry in motion.7. If you don't pay your exorcist you can get repossessed.8. With her marriage she got a new name and a dress.9. Show me a piano falling down a mine shaft and I'll show you A-flat miner.10. When a clock is hungry it goes back four seconds.11. The guy who fell onto an upholstery machine was fully recovered.12. A grenade fell onto a kitchen floor in France resulted in Linoleum Blownapart.13. You are stuck with your debt if you can't budge it.14. Local Area Network in Australia : The LAN down under.15. He broke into song because he couldn't find the key.16. A calendar's days are numbered.17.. A lot of money is tainted: 'Taint yours, and 'taint mine.18. A boiled egg is hard to beat.19. He had a photographic memory which was never developed.20. A plateau is a high form of flattery.21. The short fortuneteller who escaped from prison: a small medium at large.22. Those who get too big for their britches will be exposed in the end.23. When you've seen one shopping center you've seen a mall.24. If you jump off a Paris bridge, you are in Seine.25. When she saw her first strands of gray hair, she thought she'd dye.26. Bakers trade bread recipes on a knead to know basis.27. Santa's helpers are subordinate clauses.28. Acupuncture: a jab well done.29. Marathon runners with bad shoes suffer the agony of de feet. 30. The roundest knight at king Arthur's round table was Sir Cumference.. He acquired his size from too much pi. 31. I thought I saw an eye doctor on an Alaskan island, but it turned out to be an optical Aleutian.32. She was only a whisky maker, but he loved her still.33. A rubber band pistol was confiscated from algebra class because it was a weapon of math disruption.34. The butcher backed into the meat grinder and got a little behind in his work.35. No matter how much you push the envelope, it'll still be stationery.36. A dog gave birth to puppies near the road and was cited for littering.37. Two silk worms had a race. They ended up in a tie.38. A hole has been found in the nudist camp wall. The police are looking into it.39. Atheism is a non-prophet organization.40. Two hats were hanging on a hat rack in the hallway. One hat said to the other, 'You stay here, I'll go on a head.'41. I wondered why the baseball kept getting bigger. Then it hit me.42. A sign on the lawn at a drug rehab center said: 'Keep off the Grass.'43. A small boy swallowed some coins and was taken to a hospital. When his grandmother telephoned to ask how he was, a nurse said, 'No change yet.'44. The soldier who survived mustard gas and pepper spray is now a seasoned veteran.45. When cannibals ate a missionary, they got a taste of religion.46. Don't join dangerous cults: Practice safe sects. Ken Baker (mostly lurker) UIP/IPF 12/05 New Hampshire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2009 Report Share Posted May 1, 2009 Go to www.puritan.com for NAC,,,, many here on the board purchase from them. Much cheaper. 3 x a day...600 mg. Some get stomach problems...I did. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Good News Sher In one of your replys to either Caro or Ken, you had said that good news usually came in 3's. Ken was one, Caro two and now three!Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/GerdLady Slipper Orchid LEXOPHILES (LOVERS OF WORDS):1. A bicycle can't stand alone; it is two tired.2. A will is a dead giveaway.3. Time flies like an arrow; fruit flies like a banana.4. A backward poet writes inverse.5. In a democracy it's your vote that counts; in feudalism, it's your Count that votes.6. A chicken crossing the road: poultry in motion.7. If you don't pay your exorcist you can get repossessed.8. With her marriage she got a new name and a dress.9. Show me a piano falling down a mine shaft and I'll show you A-flat miner.10. When a clock is hungry it goes back four seconds.11. The guy who fell onto an upholstery machine was fully recovered.12. A grenade fell onto a kitchen floor in France resulted in Linoleum Blownapart.13. You are stuck with your debt if you can't budge it.14. Local Area Network in Australia : The LAN down under.15. He broke into song because he couldn't find the key.16. A calendar's days are numbered.17.. A lot of money is tainted: 'Taint yours, and 'taint mine.18. A boiled egg is hard to beat.19. He had a photographic memory which was never developed.20. A plateau is a high form of flattery.21. The short fortuneteller who escaped from prison: a small medium at large.22. Those who get too big for their britches will be exposed in the end.23. When you've seen one shopping center you've seen a mall.24. If you jump off a Paris bridge, you are in Seine.25. When she saw her first strands of gray hair, she thought she'd dye.26. Bakers trade bread recipes on a knead to know basis.27. Santa's helpers are subordinate clauses.28. Acupuncture: a jab well done.29. Marathon runners with bad shoes suffer the agony of de feet. 30. The roundest knight at king Arthur's round table was Sir Cumference.. He acquired his size from too much pi. 31. I thought I saw an eye doctor on an Alaskan island, but it turned out to be an optical Aleutian.32. She was only a whisky maker, but he loved her still.33. A rubber band pistol was confiscated from algebra class because it was a weapon of math disruption.34. The butcher backed into the meat grinder and got a little behind in his work.35. No matter how much you push the envelope, it'll still be stationery.36. A dog gave birth to puppies near the road and was cited for littering.37. Two silk worms had a race. They ended up in a tie.38. A hole has been found in the nudist camp wall. The police are looking into it.39. Atheism is a non-prophet organization.40. Two hats were hanging on a hat rack in the hallway. One hat said to the other, 'You stay here, I'll go on a head.'41. I wondered why the baseball kept getting bigger. Then it hit me.42. A sign on the lawn at a drug rehab center said: 'Keep off the Grass.'43. A small boy swallowed some coins and was taken to a hospital. When his grandmother telephoned to ask how he was, a nurse said, 'No change yet.'44. The soldier who survived mustard gas and pepper spray is now a seasoned veteran.45. When cannibals ate a missionary, they got a taste of religion.46. Don't join dangerous cults: Practice safe sects. Ken Baker (mostly lurker) UIP/IPF 12/05 New Hampshire Quote Link to comment Share on other sites More sharing options...
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