Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 MB Just so they know its not just us, " proprietary " was the word my pulmonologist used to describe any who didn't want a patient to have one. He then added " how could any pulmonologist think he could possibly know what your saturation does with everything you do during the day while he's here sitting in his office? We depend on you to keep us apprised of your saturation and requirements. ly, oxygen saturation and requirements is the easiest and best way to monitor the disease. After a point, you know what the CT's will show. PFT's do fluctuate but show over a long term. However, most take them only every three month. Oximeter. Every day. Every activity. It is the perfect medical monitoring device. Any cardiologist would tell someone with blood pressure problems to check regularly and I'm sure if there was a finger tip model they'd use it to check under different conditions. Any doctor has diabetics monitor their blood sugar. Any pulmonologist knowledgeable about PF is impressed with the patient who monitors. All mine were. In fact, I've been to 25 doctors or so the past two years and they have all been impressed and pleased by the oximeter. Not a single negative comment. But they know the disease. The only difference in the unit he has in his office, which is generally a Nonin 9500 and mine is that he paid over $1000 and I paid $249. The only difference in my Nonin and the one we found here in terms of FDA proven accuracy is $180. In fact, I keep meaning to buy one of those to have a spare because as many times as mine has rolled across the floor it has to give up some time. > > 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@... " 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 MB Just so they know its not just us, " proprietary " was the word my pulmonologist used to describe any who didn't want a patient to have one. He then added " how could any pulmonologist think he could possibly know what your saturation does with everything you do during the day while he's here sitting in his office? We depend on you to keep us apprised of your saturation and requirements. ly, oxygen saturation and requirements is the easiest and best way to monitor the disease. After a point, you know what the CT's will show. PFT's do fluctuate but show over a long term. However, most take them only every three month. Oximeter. Every day. Every activity. It is the perfect medical monitoring device. Any cardiologist would tell someone with blood pressure problems to check regularly and I'm sure if there was a finger tip model they'd use it to check under different conditions. Any doctor has diabetics monitor their blood sugar. Any pulmonologist knowledgeable about PF is impressed with the patient who monitors. All mine were. In fact, I've been to 25 doctors or so the past two years and they have all been impressed and pleased by the oximeter. Not a single negative comment. But they know the disease. The only difference in the unit he has in his office, which is generally a Nonin 9500 and mine is that he paid over $1000 and I paid $249. The only difference in my Nonin and the one we found here in terms of FDA proven accuracy is $180. In fact, I keep meaning to buy one of those to have a spare because as many times as mine has rolled across the floor it has to give up some time. > > 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@... " 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 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 To: Breathe-Support Sent: 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 23, 2009 Report Share Posted April 23, 2009 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 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 23, 2009 Report Share Posted April 23, 2009 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 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 30, 2009 Report Share Posted April 30, 2009 Sunny, Something in your post just kind of jumped out at me....brussel sprouts would probably not be my first choice to try to put on a tender tummy. I love them but they are very gaseous and difficult to digest. You might want to stick with lighter easier to digest foods for awhile till you get back on track. How about some good old fashioned chicken soup? Soups might be really helpful right now, easy to get down and get through your system plus lots of fluid and electrolyes. Don't understand what's going on with your oxygen. They need to set you up and get it going. If it's the doctors office asking what provider you want, tell them truthfully you don't know but they should just set you up with someone to get you started. You can always switch providers but they need to get you some oxygen NOW! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, April 30, 2009 4:47:58 PMSubject: Re: Afraid Sher, Thank you for your kind words. I am still not eating much at all. I had a cup of brussell sprouts last night and spent 2 hours literally screaming in pain. It just isn't worth it to eat when it causes so much pain. I am trying to drink lots and lots of water because it hurts so bad when I go potty now. I figure another UTI. They aren't infrequent with me but antibiotics usually clears it up fairly quickly. Lupus has attacked me kidneys and done some damage in the past so it is not unexpected or worrisome to me. I am seeing the GI doc at 2:45 today. All morning I have been praying that first off he can figure out why it hurts so bad to eat and why other than at the hospital the other night I don't go poo. Second that he will refer me to a surgeon right away so they can stop the aspiration and my lungs won't be damaged any further. To be honest I am feeling more confident and more assertive. For the first time I feel like I can question the doctor and make him take time for me. After all don't we all make his house payments? You all have been so good for me I wish there were words to express the changes I am making JUST because of you and everyone else's care and straight talk. And besides all of the other good, I have dropped from 220 size 24W to 170 size 12 in just about 12 weeks. I am looking good and it means I get new clothes. Right now all of the weight seems to be coming off from the waist up. My backside still resembles a humvee going down the I90. Since I can't do hardly any exercise it makes it hard to work it off. I am still waiting, since Tuesday, for my oxygen. The called yesterday to ask what provider I wanted. I had no idea. We live in the boonies and I don't know who delivers here. Supposedly someone was suppose to call me today to get me set up but no word yet. And by the way: I love your big mouth so don't you dare change a whit. Sunny From: Sher Bauman Sent: Wednesday, April 29, 2009 1:54 PM To: Breathe-Support@ yahoogroups. com Subject: Re: Afraid Sunny... My gosh, thank you for such kind words. I do lay claim to a big heart and I so want to be helpful when/where I can. I have a big mouth to match the big heart Sunny and I seldom mince words. Your last few posts are sounding much more upbeat. How are you doing now with food/eating? MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Afraid I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly" . He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2009 Report Share Posted April 30, 2009 Beth, Just got back from GI doc and they have scheduled a barium swallow as the GI thinks I might also have a hernia at the top of my stomach. I have never heard of such a thing but I trust him. Also surgeon will be calling me to schedule the thing to fix my CAN or is it CAP. Whatever right now I am on top of the world because DRUM ROLL PLEASE.... my bowels finally moved on their own! I know, I know it sounds silly but in my case it's a major event and probably signifies that at least that area will get back to normal. IBS sucks! I think I am finally unblocked and will be able to start eating again. No more throwing up - yeah! No more stomach pain - double yeah! You are probably right about the sprouts but Rich was just trying to find something to tempt me with since I won't eat anything. Since Tuesday I lost another 3 pounds. At first I was kind of jazzed about losing the weight but it's starting to get scary now. Hopefully things are looking up. I called my pulmo doc and the nurse still hasn't called me back. I think she was calling Lincare so I am going to call them tomorrow to see if they got the order. Pulmo jerk takes Fridays off so if they didn't call in or fax in the order I am out of luck until Monday. To me it seems so urgent but the are very blasé about the whole thing. In the meantime, for you, tonight I will have some chicken soup. Thanks for caring. Sunny From: Beth Sent: Thursday, April 30, 2009 4:01 PM To: Breathe-Support Subject: Sunny Sunny, Something in your post just kind of jumped out at me....brussel sprouts would probably not be my first choice to try to put on a tender tummy. I love them but they are very gaseous and difficult to digest. You might want to stick with lighter easier to digest foods for awhile till you get back on track. How about some good old fashioned chicken soup? Soups might be really helpful right now, easy to get down and get through your system plus lots of fluid and electrolyes. Don't understand what's going on with your oxygen. They need to set you up and get it going. If it's the doctors office asking what provider you want, tell them truthfully you don't know but they should just set you up with someone to get you started. You can always switch providers but they need to get you some oxygen NOW! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support Sent: Thursday, April 30, 2009 4:47:58 PMSubject: Re: Afraid Sher, Thank you for your kind words. I am still not eating much at all. I had a cup of brussell sprouts last night and spent 2 hours literally screaming in pain. It just isn't worth it to eat when it causes so much pain. I am trying to drink lots and lots of water because it hurts so bad when I go potty now. I figure another UTI. They aren't infrequent with me but antibiotics usually clears it up fairly quickly. Lupus has attacked me kidneys and done some damage in the past so it is not unexpected or worrisome to me. I am seeing the GI doc at 2:45 today. All morning I have been praying that first off he can figure out why it hurts so bad to eat and why other than at the hospital the other night I don't go poo. Second that he will refer me to a surgeon right away so they can stop the aspiration and my lungs won't be damaged any further. To be honest I am feeling more confident and more assertive. For the first time I feel like I can question the doctor and make him take time for me. After all don't we all make his house payments? You all have been so good for me I wish there were words to express the changes I am making JUST because of you and everyone else's care and straight talk. And besides all of the other good, I have dropped from 220 size 24W to 170 size 12 in just about 12 weeks. I am looking good and it means I get new clothes. Right now all of the weight seems to be coming off from the waist up. My backside still resembles a humvee going down the I90. Since I can't do hardly any exercise it makes it hard to work it off. I am still waiting, since Tuesday, for my oxygen. The called yesterday to ask what provider I wanted. I had no idea. We live in the boonies and I don't know who delivers here. Supposedly someone was suppose to call me today to get me set up but no word yet. And by the way: I love your big mouth so don't you dare change a whit. Sunny From: Sher Bauman Sent: Wednesday, April 29, 2009 1:54 PM To: Breathe-Support@ yahoogroups. com Subject: Re: Afraid Sunny... My gosh, thank you for such kind words. I do lay claim to a big heart and I so want to be helpful when/where I can. I have a big mouth to match the big heart Sunny and I seldom mince words. Your last few posts are sounding much more upbeat. How are you doing now with food/eating? MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Afraid I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly" . He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2009 Report Share Posted April 30, 2009 Sunny, Congrats on the poo... I understand that.. when I was younger I lived with that problem. I hope your pulmojerk has a rotten week-end. How dare a Doctor treat a patiens so carelessly.. I sure wanna smack some of them. I would find another for sure and quickly.  Take care. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Beth, Just got back from GI doc and they have scheduled a barium swallow as the GI thinks I might also have a hernia at the top of my stomach. I have never heard of such a thing but I trust him. Also surgeon will be calling me to schedule the thing to fix my CAN or is it CAP. Whatever right now I am on top of the world because    DRUM ROLL PLEASE.... my bowels finally moved on their own! I know, I know it sounds silly but in my case it's a major event and probably signifies that at least that area will get back to normal. IBS sucks! I think I am finally unblocked and will be able to start eating again. No more throwing up - yeah! No more stomach pain - double yeah! You are probably right about the sprouts but Rich was just trying to find something to tempt me with since I won't eat anything. Since Tuesday I lost another 3 pounds. At first I was kind of jazzed about losing the weight but it's starting to get scary now. Hopefully things are looking up. I called my pulmo doc and the nurse still hasn't called me back. I think she was calling Lincare so I am going to call them tomorrow to see if they got the order. Pulmo jerk takes Fridays off so if they didn't call in or fax in the order I am out of luck until Monday. To me it seems so urgent but the are very blasé about the whole thing. In the meantime, for you, tonight I will have some chicken soup. Thanks for caring. SunnyFrom: BethSent: Thursday, April 30, 2009 4:01 PMTo: Breathe-Support Subject: SunnySunny,Something in your post just kind of jumped out at me....brussel sprouts would probably not be my first choice to try to put on a tender tummy. I love them but they are very gaseous and difficult to digest. You might want to stick with lighter easier to digest foods for awhile till you get back on track. How about some good old fashioned chicken soup? Soups might be really helpful right now, easy to get down and get through your system plus lots of fluid and electrolyes. Don't understand what's going on with your oxygen. They need to set you up and get it going. If it's the doctors office asking what provider you want, tell them truthfully you don't know but they should just set you up with someone to get you started. You can always switch providers but they need to get you some oxygen NOW! BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support Sent: Thursday, April 30, 2009 4:47:58 PMSubject: Re: AfraidSher, Thank you for your kind words. I am still not eating much at all. I had a cup of brussell sprouts last night and spent 2 hours literally screaming in pain. It just isn't worth it to eat when it causes so much pain. I am trying to drink lots and lots of water because it hurts so bad when I go potty now. I figure another UTI. They aren't infrequent with me but antibiotics usually clears it up fairly quickly. Lupus has attacked me kidneys and done some damage in the past so it is not unexpected or worrisome to me. I am seeing the GI doc at 2:45 today. All morning I have been praying that first off he can figure out why it hurts so bad to eat and why other than at the hospital the other night I don't go poo. Second that he will refer me to a surgeon right away so they can stop the aspiration and my lungs won't be damaged any further. To be honest I am feeling more confident and more assertive. For the first time I feel like I can question the doctor and make him take time for me. After all don't we all make his house payments? You all have been so good for me I wish there were words to express the changes I am making JUST because of you and everyone else's care and straight talk. And besides all of the other good, I have dropped from 220 size 24W to 170 size 12 in just about 12 weeks. I am looking good and it means I get new clothes. Right now all of the weight seems to be coming off from the waist up. My backside still resembles a humvee going down the I90. Since I can't do hardly any exercise it makes it hard to work it off. I am still waiting, since Tuesday, for my oxygen. The called yesterday to ask what provider I wanted. I had no idea. We live in the boonies and I don't know who delivers here. Supposedly someone was suppose to call me today to get me set up but no word yet. And by the way: I love your big mouth so don't you dare change a whit. SunnyFrom: Sher BaumanSent: Wednesday, April 29, 2009 1:54 PMTo: Breathe-Support@ yahoogroups. comSubject: Re: AfraidSunny... My gosh, thank you for such kind words. I do lay claim to a big heart and I so want to be helpful when/where I can.I have a big mouth to match the big heart Sunny and I seldom mince words.Your last few posts are sounding much more upbeat.How are you doing now with food/eating?   MamaSher; 70, IPF 3-06, OR.   NasturtiumsDon't fret about tomorrow, God is already there! AfraidI've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly" . He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand. Quote Link to comment Share on other sites More sharing options...
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