Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 sher I do have a husband, however he just had open heart surgery and then amputation of his right leg above the knee. He is emotionally a train wreck and I'm the cheerleader to keep him going ,, He is on maximun overload for depression and has not grasped the thought of his "caregiver" wife being diagnosed with a disease like ipf. I still work full time .I just feel like I can't talk to him about anything like how I feel. Thank God I found this board and you and everyone who give me support and friendship and knowledge . God Bless you.Kay R.52.ipf.09,PA To: Breathe-Support Sent: Friday, March 27, 2009 6:58:44 PMSubject: Re: (Newby) Kay... Is there only your mother in your family? What about husband, friends? I have not heard of Dr. Newman but I'm clear out here in Oregon. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! first visit to pulmo guy (Newby) Hi everyone , I went to see my pulmon guy ( first visit ) he showed me the ct scan of my lungs and said I have that crushed glass haze , and honeycombing in the lower part of my lungs. He had my ct scan that was done 5 years ago. And said it doesn't show anything on that ct scan. So this is probably occured in the last five years. He did a complete exam and must have talked to me for a hour. I was so afraid. He ordered a high resolution cat scan and PFT's with blood gases, also a noctural o2 for overnight study. He also sent me for blood work to check for rumatoid arthritis and lupus. Does anyone on this board have lupus??? He also talked about a lung biopsy. Has anyone every hears of a Dr... Neuman at Fairfax, hospital??? He said this guy is good and he sends alot of patient to see him for a second opnion. I thank god for all of you to talk to..My family thinks this is something a pill can cure. Please write back Kay R.52.ipf.09, PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 sher I do have a husband, however he just had open heart surgery and then amputation of his right leg above the knee. He is emotionally a train wreck and I'm the cheerleader to keep him going ,, He is on maximun overload for depression and has not grasped the thought of his "caregiver" wife being diagnosed with a disease like ipf. I still work full time .I just feel like I can't talk to him about anything like how I feel. Thank God I found this board and you and everyone who give me support and friendship and knowledge . God Bless you.Kay R.52.ipf.09,PA To: Breathe-Support Sent: Friday, March 27, 2009 6:58:44 PMSubject: Re: (Newby) Kay... Is there only your mother in your family? What about husband, friends? I have not heard of Dr. Newman but I'm clear out here in Oregon. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! first visit to pulmo guy (Newby) Hi everyone , I went to see my pulmon guy ( first visit ) he showed me the ct scan of my lungs and said I have that crushed glass haze , and honeycombing in the lower part of my lungs. He had my ct scan that was done 5 years ago. And said it doesn't show anything on that ct scan. So this is probably occured in the last five years. He did a complete exam and must have talked to me for a hour. I was so afraid. He ordered a high resolution cat scan and PFT's with blood gases, also a noctural o2 for overnight study. He also sent me for blood work to check for rumatoid arthritis and lupus. Does anyone on this board have lupus??? He also talked about a lung biopsy. Has anyone every hears of a Dr... Neuman at Fairfax, hospital??? He said this guy is good and he sends alot of patient to see him for a second opnion. I thank god for all of you to talk to..My family thinks this is something a pill can cure. Please write back Kay R.52.ipf.09, PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 Hi Geeta.... I responded to your last post. I'm doing a bit better but getting too tired now. Will go lie down for awhile and catch up later. Love ya Geeta. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! * > >> > Hi Group, I just called Sher to check on her and she is just in a bad > > way. She is in a lot of pain and depressed. So please help me pray for > > her. > >> >> > Love & Prayers, Peggy> > Florida, 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." > >> >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 Hi Geeta.... I responded to your last post. I'm doing a bit better but getting too tired now. Will go lie down for awhile and catch up later. Love ya Geeta. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! * > >> > Hi Group, I just called Sher to check on her and she is just in a bad > > way. She is in a lot of pain and depressed. So please help me pray for > > her. > >> >> > Love & Prayers, Peggy> > Florida, 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." > >> >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 Ahhhhhh Caro, bless your little pointed head {;o), I love you too girl. I've sure felt the love and prayers lately. Thanks for yours. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Sher I'm sorry to hear this news Peggy...if you ring Sher agaoin please pass on that I'm holding Sher in my thoughts ..... GIO>> Hi Group, I just called Sher to check on her and she is just in a bad > way. She is in a lot of pain and depressed. So please help me pray > for her.> > > Love & Prayers, Peggy> Florida, 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."> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 Ahhhhhh Caro, bless your little pointed head {;o), I love you too girl. I've sure felt the love and prayers lately. Thanks for yours. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Sher I'm sorry to hear this news Peggy...if you ring Sher agaoin please pass on that I'm holding Sher in my thoughts ..... GIO>> Hi Group, I just called Sher to check on her and she is just in a bad > way. She is in a lot of pain and depressed. So please help me pray > for her.> > > Love & Prayers, Peggy> Florida, 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."> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2009 Report Share Posted April 15, 2009 Sher, I know just what you mean about Miralax. It does the same thing to me. I hope that you get well soon. I am not feeling well today. Sort of the same as Miralax only not so bad. I hope that I haven't picked up a bug. BJ Re: from Brett Hi Sher,I have same reaction to statins. Can take NONE of them! Anyhow, have IPF so what do I care about a li'l ole heart attack!!!As for impactions, buy PRUNES!!! If you have to cut them up and take with water then get busy & eat the darn things. As a retired RN I know of what I speak and also of what you speak! Been there, done that on both ends!!!ann, IPF 1997, HP 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2009 Report Share Posted April 18, 2009 The guide word to prednisone... know your blood chemistry (threat of diabetes II), check interactions, and know that different doses on different can have very different results, some good and some bad not necessarily both. Good luck Stefani > > Sher, > Some people report increased energy when on higher doses of prednisone. It can be a jittery, restless kind of energy and insomnia usually goes along with it. I never found it to be a productive kind of energy, it didn't allow me to accomplish anything extra. Even with that change that prednisone can make in some of us we're still limited by our diseased lungs. At least that's my experience. I know that others have been through different scenarios related to prednisone. >  > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: Sher Bauman > To: Breathe-Support > Sent: Saturday, April 18, 2009 12:22:50 PM > Subject: Re: Hi Sher > > > > > > BJ... I did miss the post... > I'm crossing my fingers for a good sale. > I guess it's not doable for your daughter to come to you and help you move. I'm sure you thought of that. > Gosh BJ you just can't do that move alone. I don't mean to be intrusive but can you hire help or can your kids hire help? Often high school boys are looking for work. Or now, grown men need the work! > Please don't do that by yourself! It's just too much for women of our 'delicate persuasion'. ;o) > I can't tell from your post... are you using O2 when you away from home? If not that sure could be dragging you down. > With my limited knowledge of prednisone (Hey, MB...give us a hand here) I think it gives you energy. At least at some level. Maybe the dosage has something to do with it... > I think you know when you are " progressing " BJ... being 'tired' after being out may not be progression. .. > Talk to your dr about your meds/O2 and what fears your sister has for you. > You could call the Police Dept and inquire about the incident.... let's hope that gives you confidence! > Do take care now! > > 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 18, 2009 Report Share Posted April 18, 2009 The guide word to prednisone... know your blood chemistry (threat of diabetes II), check interactions, and know that different doses on different can have very different results, some good and some bad not necessarily both. Good luck Stefani > > Sher, > Some people report increased energy when on higher doses of prednisone. It can be a jittery, restless kind of energy and insomnia usually goes along with it. I never found it to be a productive kind of energy, it didn't allow me to accomplish anything extra. Even with that change that prednisone can make in some of us we're still limited by our diseased lungs. At least that's my experience. I know that others have been through different scenarios related to prednisone. >  > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: Sher Bauman > To: Breathe-Support > Sent: Saturday, April 18, 2009 12:22:50 PM > Subject: Re: Hi Sher > > > > > > BJ... I did miss the post... > I'm crossing my fingers for a good sale. > I guess it's not doable for your daughter to come to you and help you move. I'm sure you thought of that. > Gosh BJ you just can't do that move alone. I don't mean to be intrusive but can you hire help or can your kids hire help? Often high school boys are looking for work. Or now, grown men need the work! > Please don't do that by yourself! It's just too much for women of our 'delicate persuasion'. ;o) > I can't tell from your post... are you using O2 when you away from home? If not that sure could be dragging you down. > With my limited knowledge of prednisone (Hey, MB...give us a hand here) I think it gives you energy. At least at some level. Maybe the dosage has something to do with it... > I think you know when you are " progressing " BJ... being 'tired' after being out may not be progression. .. > Talk to your dr about your meds/O2 and what fears your sister has for you. > You could call the Police Dept and inquire about the incident.... let's hope that gives you confidence! > Do take care now! > > 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 26, 2009 Report Share Posted April 26, 2009 Sunny....I think if I were you I would go to the ER before I would see that pulmojerk again. I've truly not heard of a dr who treats a patient as he has you. You can get copies of chart notes from his office just by request and then will have the info. when you need it... Since you have confidence in your GI guy, then start there and have him make a referral or suggestion. Of course you're scared and depressed. With no direct compassion/treatment/feedback from the pulmojerk what else could you feel? I can't remember all the details, sorry, but do you have a pcp you like? Seems like there was a problem w pcp but I get info mixed up w so many newbies. I wish I could be more help, I'm certainly feeling your frustration. A pulmo probably won't treat the Lupus anyway. We are in a world of 'specialists' now. Nearly everything is a different dr. Hang on, MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! 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 26, 2009 Report Share Posted April 26, 2009 Sunny....I think if I were you I would go to the ER before I would see that pulmojerk again. I've truly not heard of a dr who treats a patient as he has you. You can get copies of chart notes from his office just by request and then will have the info. when you need it... Since you have confidence in your GI guy, then start there and have him make a referral or suggestion. Of course you're scared and depressed. With no direct compassion/treatment/feedback from the pulmojerk what else could you feel? I can't remember all the details, sorry, but do you have a pcp you like? Seems like there was a problem w pcp but I get info mixed up w so many newbies. I wish I could be more help, I'm certainly feeling your frustration. A pulmo probably won't treat the Lupus anyway. We are in a world of 'specialists' now. Nearly everything is a different dr. Hang on, MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! 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 27, 2009 Report Share Posted April 27, 2009 Sunny... I understand having so many drs. So do I and I know most on the board do the same. I think the days of one pcp are long gone. I can't help but wonder here, since you have all these drs what is the REAL reason you are not seeing one of them? The pulmo probably won't treat anything beyond his specialty. I agree with your husband, you need to go to ER and find out what's wrong. You may have a bowel blockage or many other things could cause what you are feeling... Sunny, you are dx yourself and that can lead to trouble. More trouble than you are having. I for one, am not understanding why you don't see the appropriate dr or go to ER. What point are you making by not going? Come on girl, go get some medical attention! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! 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 27, 2009 Report Share Posted April 27, 2009 I hope I am doing this right. Sunny is still sleeping cause she had a real bad night. Lot of pain more than I ever saw her in. She woundn't go to ER cause with her Lupus it takes them 10 pokes for an IV and she says it hurts too bad. She had me real scared but when she was awake this morning she wanted me to let Mama Sher and Beth know that she is a bit better today. Can I ask a question too even though it's not me that's sick? I'm Rich her husband and I am a lot worried about her not going to the bathroom but she quit eating hardly anything a couple of weeks ago cause she says it makes it hard to breath and makes her sick. Is that normal with what is wrong with her lung? I want to thank all you guys for listening to Sunny cause it makes her feel like she is not just another body like Dr. Elmer did. He was not a good doctor at all and I wanted to pop him for the way he treated her. She thinks noone will take good care of her cause she is trying to get social security and they don't want to be involved. Can that be true? What the doctors say and the changes I see in her are real scary. She shouldn't be losing weight that fast and she is so tired she don't even want to go rock hunting. She mostly ask every weekend to go but she's too tired now. Did she tell you she get's bad headaches too and get's real dizzy? I think she makes too light of how she feels and that is another reason the doctor don't take her serious enough. I am mostly worry cause she seems to have given up and just wants to die. That scares me lots but I don't know what to do about it. She goes to therapy too and she told them that she is tired of pain and being sick and wants to give up. That will go away when she gets used to this new thing. Right? She has so many medical things that cause her pain and has to take so many pills I kind of understand but I am worry about her. We don't have a lot of money and so she can't go to all the drs she supposed too. We pick what is worst and try and fix that first. It is hard and I feel bad cause I can't get her the drs she needs all the time. So she says she is better today only her back and lungs are hurting bad. From: Sher Bauman Sent: Monday, April 27, 2009 9:41 AM To: Breathe-Support Subject: Re: Sher Sunny... I understand having so many drs. So do I and I know most on the board do the same. I think the days of one pcp are long gone. I can't help but wonder here, since you have all these drs what is the REAL reason you are not seeing one of them? The pulmo probably won't treat anything beyond his specialty. I agree with your husband, you need to go to ER and find out what's wrong. You may have a bowel blockage or many other things could cause what you are feeling... Sunny, you are dx yourself and that can lead to trouble. More trouble than you are having. I for one, am not understanding why you don't see the appropriate dr or go to ER. What point are you making by not going? Come on girl, go get some medical attention! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! 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 27, 2009 Report Share Posted April 27, 2009 She needs medical help urgently and by doctors much much better than the ones she's been seeing. A teaching hospital with expertise with Interstitial Lung Diseases would be best, but right now she has an emergency and her refusal to get care may kill her. I hate being so blunt but I hate losing friends because they put off going to the hospital. I don't know your ability to force her to do anything, but if you do have some, take her for help right this minute. Then after the current issues, get her to new doctors. Her care to this point is horrible and knowing what to advise based on it is impossible. No part of the medical care she's been getting is acceptable. Better is out there. We've pointed her toward some facilities but right now she just needs urgent help. Please do everything in your power to not let her delay it further. > > I hope I am doing this right. Sunny is still sleeping cause she had a real bad night. Lot of pain more than I ever saw her in. She woundn't go to ER cause with her Lupus it takes them 10 pokes for an IV and she says it hurts too bad. She had me real scared but when she was awake this morning she wanted me to let Mama Sher and Beth know that she is a bit better today. Can I ask a question too even though it's not me that's sick? I'm Rich her husband and I am a lot worried about her not going to the bathroom but she quit eating hardly anything a couple of weeks ago cause she says it makes it hard to breath and makes her sick. Is that normal with what is wrong with her lung? I want to thank all you guys for listening to Sunny cause it makes her feel like she is not just another body like Dr. Elmer did. He was not a good doctor at all and I wanted to pop him for the way he treated her. She thinks noone will take good care of her cause she is trying to get social security and they don't want to be involved. Can that be true? What the doctors say and the changes I see in her are real scary. She shouldn't be losing weight that fast and she is so tired she don't even want to go rock hunting. She mostly ask every weekend to go but she's too tired now. Did she tell you she get's bad headaches too and get's real dizzy? I think she makes too light of how she feels and that is another reason the doctor don't take her serious enough. I am mostly worry cause she seems to have given up and just wants to die. That scares me lots but I don't know what to do about it. She goes to therapy too and she told them that she is tired of pain and being sick and wants to give up. That will go away when she gets used to this new thing. Right? She has so many medical things that cause her pain and has to take so many pills I kind of understand but I am worry about her. We don't have a lot of money and so she can't go to all the drs she supposed too. We pick what is worst and try and fix that first. It is hard and I feel bad cause I can't get her the drs she needs all the time. So she says she is better today only her back and lungs are hurting bad. > > > From: Sher Bauman > Sent: Monday, April 27, 2009 9:41 AM > To: Breathe-Support > Subject: Re: Sher > > > > > > > Sunny... I understand having so many drs. So do I and I know most on the board do the same. I think the days of one pcp are long gone. > I can't help but wonder here, since you have all these drs what is the REAL reason you are not seeing one of them? The pulmo probably won't treat anything beyond his specialty. > I agree with your husband, you need to go to ER and find out what's wrong. You may have a bowel blockage or many other things could cause what you are feeling... > Sunny, you are dx yourself and that can lead to trouble. More trouble than you are having. > I for one, am not understanding why you don't see the appropriate dr or go to ER. > What point are you making by not going? > Come on girl, go get some medical attention! > MamaSher; 70, IPF 3-06, OR. > Nasturtiums > Don't fret about tomorrow, God is already there! > > 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 27, 2009 Report Share Posted April 27, 2009 (Rich?). hi and thanks for writing. (My husband's name is Rich too). I know you are so worried about Sunny and from what she writes and what you write you two are dealing with so much all at once. It would be my suggestion that she get some immediate care! ER is probably necessary at this point.... Lupus should not have any effect on getting an IV going....that's the skill of the person with the needle.... None of us can give medical advice as such, Rich, but I don't think her 'lung condition' has a direct bearing on her not eating. S/S right now can't be a worry...Sunny needs medical attention. If she won't go, call an ambulance. You both know these symptoms indicate something is wrong. As I said, you two are stock piling everything into one big basket....get Sunny help first and then you will have an idea what you are dealing with. Write anytime . MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! 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 27, 2009 Report Share Posted April 27, 2009 , If you're reading this, Bruce said it all. If you have any way to force the issue, do so. She needs to be seen by a doctor today. Her oxygen level is too low, she's not eating, she has chest pain and she hasn't moved her bowels in nearly two weeks. In my opinion, you need to call 911 and you need to do it now. Sunny, please take care of yourself. We want you well! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, April 27, 2009 1:52:04 PMSubject: Re: Sher She needs medical help urgently and by doctors much much better than theones she's been seeing. A teaching hospital with expertise withInterstitial Lung Diseases would be best, but right now she has anemergency and her refusal to get care may kill her. I hate being soblunt but I hate losing friends because they put off going to thehospital. I don't know your ability to force her to do anything, but ifyou do have some, take her for help right this minute. Then after thecurrent issues, get her to new doctors. Her care to this point ishorrible and knowing what to advise based on it is impossible.No part of the medical care she's been getting is acceptable. Better isout there. We've pointed her toward some facilities but right now shejust needs urgent help. Please do everything in your power to not lether delay it further.>> I hope I am doing this right. Sunny is still sleeping cause she had areal bad night. Lot of pain more than I ever saw her in. She woundn't goto ER cause with her Lupus it takes them 10 pokes for an IV and she saysit hurts too bad. She had me real scared but when she was awake thismorning she wanted me to let Mama Sher and Beth know that she is abit better today. Can I ask a question too even though it's not methat's sick? I'm Rich her husband and I am a lot worried about her notgoing to the bathroom but she quit eating hardly anything a couple ofweeks ago cause she says it makes it hard to breath and makes her sick.Is that normal with what is wrong with her lung? I want to thank allyou guys for listening to Sunny cause it makes her feel like she is notjust another body like Dr. Elmer did. He was not a good doctor at alland I wanted to pop him for the way he treated her. She thinks noonewill take good care of her cause she is trying to get social securityand they don't want to be involved. Can that be true? What the doctorssay and the changes I see in her are real scary. She shouldn't belosing weight that fast and she is so tired she don't even want to gorock hunting. She mostly ask every weekend to go but she's too tirednow. Did she tell you she get's bad headaches too and get's real dizzy?I think she makes too light of how she feels and that is another reasonthe doctor don't take her serious enough. I am mostly worry cause sheseems to have given up and just wants to die. That scares me lots but Idon't know what to do about it. She goes to therapy too and she toldthem that she is tired of pain and being sick and wants to give up. That will go away when she gets used to this new thing. Right? She hasso many medical things that cause her pain and has to take so many pillsI kind of understand but I am worry about her. We don't have a lot ofmoney and so she can't go to all the drs she supposed too. We pick whatis worst and try and fix that first. It is hard and I feel bad cause Ican't get her the drs she needs all the time. So she says she is bettertoday only her back and lungs are hurting bad. >>> From: Sher Bauman> Sent: Monday, April 27, 2009 9:41 AM> To: Breathe-Support@ yahoogroups. com> Subject: Re: Sher>>>>>>> Sunny... I understand having so many drs. So do I and I know most onthe board do the same. I think the days of one pcp are long gone.> I can't help but wonder here, since you have all these drs what is theREAL reason you are not seeing one of them? The pulmo probably won'ttreat anything beyond his specialty.> I agree with your husband, you need to go to ER and find out what'swrong. You may have a bowel blockage or many other things could causewhat you are feeling...> Sunny, you are dx yourself and that can lead to trouble. More troublethan you are having.> I for one, am not understanding why you don't see the appropriate dror go to ER.> What point are you making by not going?> Come on girl, go get some medical attention!> MamaSher; 70, IPF 3-06, OR.> Nasturtiums> Don't fret about tomorrow, God is already there!>> Update after pulmo doc - hate toeven call him a doctor>>>> Hi Everyone,>> Just got home from pulmo dude. Refused to let me do 24 houroximeter! 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 theyfound out why my lungs are scarring so badly and why I can't breathe. Ihave Chronic Aspiration Neuritis (spell incorrectly I am sure). I amaspirating so much stomach contents that it is and has been scarring mylungs badly that's why I am down to 40% capacity. Pulmo doc says thereare only two treatments: Raglan (which I am extremely allergic too) orsurgery. He has referred me to gastro guy for surgery which in hiswords "is very intense". Anyone ever had or know anyone who has hadthis type of surgery. My gastro dude isn't back until Monday and Ireally want to know if they are going through my abdomen. or throat orwhere? 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 stomachoil in lungs is about 55. Mine was 142. Doc says without the surgery mylungs will continue to deteriorate and I will get worse and worse. Saidthe pain in my chest is esophageal spasm and it hurts like a very badword but there is nothing he can do about it. That's gastro guy'sdepartment. Believe it or not pulmo doc said "I just diagnose this Idon'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 thehuman body, Idaho> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2009 Report Share Posted April 27, 2009 OK, here is ann checking in on this one. Sunny is in dire need of A doctor, one main one, to oversee and manage all of her other specialists. All are required but need to be integrated and interpreted for Sunny alone. Usually this is your internist or family practitioner. If you don't have a good one that is concerned with her as a human being first then you need to find one fast. Her not eating can lead to electrolyte imbalance, confusion, dehydration etc... We should also keep in mind the misery of a fecal impaction. Yikes! The possible interaction of several drugs is another concern. This is why she needs one professional willing to consider it all in one package for a treatment plan as a whole. It sounds as if the confusion and disillusionment is overwhelming to both of you. Everyone is pulling for you. Please keep us posted. PS: Are there any formal patient advocates out there who will speak for those of us who are confused, sick and overwhelmed? ann -- In Breathe-Support , wrote: > > I hope I am doing this right. Sunny is still sleeping cause she had a real bad night. Lot of pain more than I ever saw her in. She woundn't go to ER cause with her Lupus it takes them 10 pokes for an IV and she says it hurts too bad. She had me real scared but when she was awake this morning she wanted me to let Mama Sher and Beth know that she is a bit better today. Can I ask a question too even though it's not me that's sick? I'm Rich her husband and I am a lot worried about her not going to the bathroom but she quit eating hardly anything a couple of weeks ago cause she says it makes it hard to breath and makes her sick. Is that normal with what is wrong with her lung? I want to thank all you guys for listening to Sunny cause it makes her feel like she is not just another body like Dr. Elmer did. He was not a good doctor at all and I wanted to pop him for the way he treated her. She thinks noone will take good care of her cause she is trying to get social security and they don't want to be involved. Can that be true? What the doctors say and the changes I see in her are real scary. She shouldn't be losing weight that fast and she is so tired she don't even want to go rock hunting. She mostly ask every weekend to go but she's too tired now. Did she tell you she get's bad headaches too and get's real dizzy? I think she makes too light of how she feels and that is another reason the doctor don't take her serious enough. I am mostly worry cause she seems to have given up and just wants to die. That scares me lots but I don't know what to do about it. She goes to therapy too and she told them that she is tired of pain and being sick and wants to give up. That will go away when she gets used to this new thing. Right? She has so many medical things that cause her pain and has to take so many pills I kind of understand but I am worry about her. We don't have a lot of money and so she can't go to all the drs she supposed too. We pick what is worst and try and fix that first. It is hard and I feel bad cause I can't get her the drs she needs all the time. So she says she is better today only her back and lungs are hurting bad. > > > From: Sher Bauman > Sent: Monday, April 27, 2009 9:41 AM > To: Breathe-Support > Subject: Re: Sher > > > > > > > Sunny... I understand having so many drs. So do I and I know most on the board do the same. I think the days of one pcp are long gone. > I can't help but wonder here, since you have all these drs what is the REAL reason you are not seeing one of them? The pulmo probably won't treat anything beyond his specialty. > I agree with your husband, you need to go to ER and find out what's wrong. You may have a bowel blockage or many other things could cause what you are feeling... > Sunny, you are dx yourself and that can lead to trouble. More trouble than you are having. > I for one, am not understanding why you don't see the appropriate dr or go to ER. > What point are you making by not going? > Come on girl, go get some medical attention! > MamaSher; 70, IPF 3-06, OR. > Nasturtiums > Don't fret about tomorrow, God is already there! > > 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 27, 2009 Report Share Posted April 27, 2009 Mike, It's a really good thought but it's a complex area of the law. With the privacy laws being what they are it's difficult if not impossible to have someone "speak for you" when it comes to medical issues and even more difficult to have our doctors give information to anyone other than our spouses or other immediate next of kin. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, April 27, 2009 3:27:46 PMSubject: Re: Sher OK, here is ann checking in on this one. Sunny is in dire need of A doctor, one main one, to oversee and manage all of her other specialists. All are required but need to be integrated and interpreted for Sunny alone. Usually this is your internist or family practitioner. If you don't have a good one that is concerned with her as a human being first then you need to find one fast. Her not eating can lead to electrolyte imbalance, confusion, dehydration etc... We should also keep in mind the misery of a fecal impaction. Yikes! The possible interaction of several drugs is another concern. This is why she needs one professional willing to consider it all in one package for a treatment plan as a whole. It sounds as if the confusion and disillusionment is overwhelming to both of you. Everyone is pulling for you. Please keep us posted.PS: Are there any formal patient advocates out there who will speak for those of us who are confused, sick and overwhelmed?ann-- In Breathe-Support@ yahoogroups. com, <rpickel1@.. .> wrote:>> I hope I am doing this right. Sunny is still sleeping cause she had a real bad night. Lot of pain more than I ever saw her in. She woundn't go to ER cause with her Lupus it takes them 10 pokes for an IV and she says it hurts too bad. She had me real scared but when she was awake this morning she wanted me to let Mama Sher and Beth know that she is a bit better today. Can I ask a question too even though it's not me that's sick? I'm Rich her husband and I am a lot worried about her not going to the bathroom but she quit eating hardly anything a couple of weeks ago cause she says it makes it hard to breath and makes her sick. Is that normal with what is wrong with her lung? I want to thank all you guys for listening to Sunny cause it makes her feel like she is not just another body like Dr. Elmer did. He was not a good doctor at all and I wanted to pop him for the way he treated her. She thinks noone will take good care of her cause she is trying to get social security and they don't want to be involved. Can that be true? What the doctors say and the changes I see in her are real scary. She shouldn't be losing weight that fast and she is so tired she don't even want to go rock hunting. She mostly ask every weekend to go but she's too tired now. Did she tell you she get's bad headaches too and get's real dizzy? I think she makes too light of how she feels and that is another reason the doctor don't take her serious enough. I am mostly worry cause she seems to have given up and just wants to die. That scares me lots but I don't know what to do about it. She goes to therapy too and she told them that she is tired of pain and being sick and wants to give up. That will go away when she gets used to this new thing. Right? She has so many medical things that cause her pain and has to take so many pills I kind of understand but I am worry about her. We don't have a lot of money and so she can't go to all the drs she supposed too. We pick what is worst and try and fix that first. It is hard and I feel bad cause I can't get her the drs she needs all the time. So she says she is better today only her back and lungs are hurting bad. > > > From: Sher Bauman > Sent: Monday, April 27, 2009 9:41 AM> To: Breathe-Support@ yahoogroups. com > Subject: Re: Sher> > > > > > > Sunny... I understand having so many drs. So do I and I know most on the board do the same. I think the days of one pcp are long gone.> I can't help but wonder here, since you have all these drs what is the REAL reason you are not seeing one of them? The pulmo probably won't treat anything beyond his specialty. > I agree with your husband, you need to go to ER and find out what's wrong. You may have a bowel blockage or many other things could cause what you are feeling...> Sunny, you are dx yourself and that can lead to trouble. More trouble than you are having.> I for one, am not understanding why you don't see the appropriate dr or go to ER.> What point are you making by not going?> Come on girl, go get some medical attention!> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > 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 27, 2009 Report Share Posted April 27, 2009 By advocate, I tended to think of someone who, while not involved in individual medical decisions, would be there to sort out in a more objective way, your treatment plan; and point out or outline for a family what direction they might head with a roadmap of sorts. Even as a retired medical professional, I am often confused and discouraged from advocating for myself. I know it isn't whining but it surely feels like it anyway. Many of us got more damage than we should have because we simply didn't want to whine all the time. I speak for myself. I tend to blow from weak to angry. Not productive. Flip that around a bit and maybe one could come up with an outline as to how to proceed to coordinate all diciplines to our best advantage. The law could be left out of it. It's a human need and we sometimes forget that these professionals are there to serve US, not the other way around. ann > > > > I hope I am doing this right. Sunny is still sleeping cause she had a real bad night. Lot of pain more than I ever saw her in. She woundn't go to ER cause with her Lupus it takes them 10 pokes for an IV and she says it hurts too bad. She had me real scared but when she was awake this morning she wanted me to let Mama Sher and Beth know that she is a bit better today. Can I ask a question too even though it's not me that's sick? I'm Rich her husband and I am a lot worried about her not going to the bathroom but she quit eating hardly anything a couple of weeks ago cause she says it makes it hard to breath and makes her sick. Is that normal with what is wrong with her lung? I want to thank all you guys for listening to Sunny cause it makes her feel like she is not just another body like Dr. Elmer did. He was not a good doctor at all and I wanted to pop him for the way he treated her. She thinks noone will take good care of her cause she is trying to > get social security and they don't want to be involved. Can that be true? What the doctors say and the changes I see in her are real scary. She shouldn't be losing weight that fast and she is so tired she don't even want to go rock hunting. She mostly ask every weekend to go but she's too tired now. Did she tell you she get's bad headaches too and get's real dizzy? I think she makes too light of how she feels and that is another reason the doctor don't take her serious enough. I am mostly worry cause she seems to have given up and just wants to die. That scares me lots but I don't know what to do about it. She goes to therapy too and she told them that she is tired of pain and being sick and wants to give up. That will go away when she gets used to this new thing. Right? She has so many medical things that cause her pain and has to take so many pills I kind of understand but I am worry about her. We don't have a lot of money and so she can't go to all > the drs she supposed too. We pick what is worst and try and fix that first. It is hard and I feel bad cause I can't get her the drs she needs all the time. So she says she is better today only her back and lungs are hurting bad. > > > > > > From: Sher Bauman > > Sent: Monday, April 27, 2009 9:41 AM > > To: Breathe-Support@ yahoogroups. com > > Subject: Re: Sher > > > > > > > > > > > > > > Sunny... I understand having so many drs. So do I and I know most on the board do the same. I think the days of one pcp are long gone. > > I can't help but wonder here, since you have all these drs what is the REAL reason you are not seeing one of them? The pulmo probably won't treat anything beyond his specialty. > > I agree with your husband, you need to go to ER and find out what's wrong. You may have a bowel blockage or many other things could cause what you are feeling... > > Sunny, you are dx yourself and that can lead to trouble. More trouble than you are having. > > I for one, am not understanding why you don't see the appropriate dr or go to ER. > > What point are you making by not going? > > Come on girl, go get some medical attention! > > MamaSher; 70, IPF 3-06, OR. > > Nasturtiums > > Don't fret about tomorrow, God is already there! > > > > 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 27, 2009 Report Share Posted April 27, 2009 i hope sunny's hubby takes her to the ER or calls 911 Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 inactive 4/09 www.transplantfund.org--- Subject: Re: SherTo: Breathe-Support Date: Monday, April 27, 2009, 12:26 AM Mama Sher, I agree with everyone and won't be seeing that person again. I do hate that because I have so many illness' I have a specialist for everything. Let's see, I have a cardiologist, pulmo, gastro, Spine/bone specialist, thyroid doctor, doctor for female stuff, urologist, rhumie, primary (who is fed up with me constantly being there, got to find a new one of those too), pain specialist, therapist, neurologist, if they have ology or ist in there title I have one. Today has been a bad day, as they afternoon and evening has progressed my chest pain has gotten worse and worse. I have been so dizzy and ditzy too. Pulmo jerk said the pain in my chest is esophageal (isn't my spelling atrocious and I went to UCLA) spasm and "yeah they are really painful". Oh thanks tons doc, think I'll sit in the corner and cry until the pain passes. What a * & *( & (* & & )(* & )(*^ & %*(%^ & (. Anyway I haven't been able to eat since Friday and ooh but I haven't gone to the bathroom except to potty in 10 days. Imagine how much more than 45 lbs I would have lost if I could go to the bathroom. I am having some extreme back pain as well. Don't know if I should be worried and don't want to go to ER although my husband is nagging and nagging. Me blacking out freaks him out for some reason. Sissy! Anyway I think I will just go to bed and maybe tomorrow will feel better. Just checked my O2 and it was 81 just sitting but I am panting a bit with pain. If I didn't know it was my lungs I would swear I am having another MI since the pain is going down my left arm and I am nauseas. But then again I am full of poo! I will persevere and get through this tonight and tomorrow will be better I know. With God on my side who can stand against me? And thank you all for listening to me snivel again. Sunny, PF 09 Idaho From: Sher Bauman Sent: Sunday, April 26, 2009 9:56 AM To: Breathe-Support@ yahoogroups. com Subject: Re: Sher Sunny....I think if I were you I would go to the ER before I would see that pulmojerk again. I've truly not heard of a dr who treats a patient as he has you. You can get copies of chart notes from his office just by request and then will have the info. when you need it... Since you have confidence in your GI guy, then start there and have him make a referral or suggestion. Of course you're scared and depressed. With no direct compassion/treatmen t/feedback from the pulmojerk what else could you feel? I can't remember all the details, sorry, but do you have a pcp you like? Seems like there was a problem w pcp but I get info mixed up w so many newbies. I wish I could be more help, I'm certainly feeling your frustration. A pulmo probably won't treat the Lupus anyway. We are in a world of 'specialists' now. Nearly everything is a different dr. Hang on, MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! 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 27, 2009 Report Share Posted April 27, 2009 We pretty much advocate for each other as is. It's hard to do more w/o being face to face, one on one... What do you specifically have in mind? MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! 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 27, 2009 Report Share Posted April 27, 2009 Okay Sher, you want the REAL reason I don't see all the doctor's I am supposed to and would rather suffer than go to the ER. Well, it is embarrassing but since you sounded so strange about it I will tell you. MONEY! My husband works an 80 week. 1/3 goes to my meds and his BP meds, then theirs housing costs, food, electric, water, phone, GASOLINE, so every time I go to the ER it is $150 co-pay. We have insurance but it doesn't pay that well and we have to buy our RX then wait 60 days to be reimbursed. There is a co-pay every time I see a doctor plus I owe 20% after that. They want their money up front usually. So there you have it, we are poor. We each cheap and do every thing else in the least expensive manner possible. The ONE luxury that I allow myself is internet. We owe so much in medical bills right now because of me that our credit is kaput. We rely on the church and friends to help feed us. Our car was given to us by someone at church. Do you get it? I can not afford to be sick anymore and maybe it would be better if I just gave up and quit being such a burden to Rich. I see that he e-mailed you and it hurt my heart to see how scared he is. Yes, you and Beth are right. My GI doc told me on the phone today to go directly to an ER but I keep waiting thinking my bowels will move and I will quit vomiting and being in pain. Does anyone else out there understand? I am tired!!! And I love my husband so much that it is killing me to watch him work so many hours and side jobs, clean, cook and stress about me. I am sorry but the pain is just too much, I feel to weak and am frankly depressed over being treated like a number by doctors. My health is complicated to no GP wants to deal with me. The one I have currently every time I see him it's like he's saying "What now?" I have spent the last two hours since I woke up praying and I still don't know what to do. No, I won't give up and do something stupid because heaven awaits but for now the above are my thoughts. Sher, if you thought there was some nefarious reason I am not seeking adequate care there isn't. Not to mention I can't seem to find any kind of doctor that cares the littlest bit about anything but giving me 5 minutes for $80. Sunny From: Sher Bauman Sent: Monday, April 27, 2009 9:41 AM To: Breathe-Support Subject: Re: Sher Sunny... I understand having so many drs. So do I and I know most on the board do the same. I think the days of one pcp are long gone. I can't help but wonder here, since you have all these drs what is the REAL reason you are not seeing one of them? The pulmo probably won't treat anything beyond his specialty. I agree with your husband, you need to go to ER and find out what's wrong. You may have a bowel blockage or many other things could cause what you are feeling... Sunny, you are dx yourself and that can lead to trouble. More trouble than you are having. I for one, am not understanding why you don't see the appropriate dr or go to ER. What point are you making by not going? Come on girl, go get some medical attention! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! 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 27, 2009 Report Share Posted April 27, 2009 Sunny I can only imagine how the money situation is but I still have to encourage you to get help, let credit go kaput, contact social services, hospital charities, other organizations we can point you to such as the Caring Voice Coalition at caringvoice.org There are ways and places to turn for help on medical bills and meds. We don't know nor need to know your specifics, but we do want to assure you help is out there. Sometimes the better facilities even have better help than the others. Duke Charities is great as an example. Most cities have a public hospital that never says no. Here over 75% of their patients don't pay. Even in the private hospital here locally about 1/3 don't pay. I don't know what is available in your area but I do know there are programs to help. I wish I was there to help locate them. There has to be some local social service that will advocate and help you find them. As to insurance, are you not on medicare? Do you not qualify for your state's medicaid as well? Fight and let your husband fight for the help you need. I'm not pretending any of it is easy or automatic, but I do know its out there available somehow. > > Okay Sher, you want the REAL reason I don't see all the doctor's I am supposed to and would rather suffer than go to the ER. Well, it is embarrassing but since you sounded so strange about it I will tell you. MONEY! My husband works an 80 week. 1/3 goes to my meds and his BP meds, then theirs housing costs, food, electric, water, phone, GASOLINE, so every time I go to the ER it is $150 co-pay. We have insurance but it doesn't pay that well and we have to buy our RX then wait 60 days to be reimbursed. There is a co-pay every time I see a doctor plus I owe 20% after that. They want their money up front usually. So there you have it, we are poor. We each cheap and do every thing else in the least expensive manner possible. The ONE luxury that I allow myself is internet. We owe so much in medical bills right now because of me that our credit is kaput. We rely on the church and friends to help feed us. Our car was given to us by someone at church. Do you get it? I can not afford to be sick anymore and maybe it would be better if I just gave up and quit being such a burden to Rich. I see that he e-mailed you and it hurt my heart to see how scared he is. Yes, you and Beth are right. My GI doc told me on the phone today to go directly to an ER but I keep waiting thinking my bowels will move and I will quit vomiting and being in pain. Does anyone else out there understand? I am tired!!! And I love my husband so much that it is killing me to watch him work so many hours and side jobs, clean, cook and stress about me. I am sorry but the pain is just too much, I feel to weak and am frankly depressed over being treated like a number by doctors. My health is complicated to no GP wants to deal with me. The one I have currently every time I see him it's like he's saying " What now? " I have spent the last two hours since I woke up praying and I still don't know what to do. No, I won't give up and do something stupid because heaven awaits but for now the above are my thoughts. Sher, if you thought there was some nefarious reason I am not seeking adequate care there isn't. Not to mention I can't seem to find any kind of doctor that cares the littlest bit about anything but giving me 5 minutes for $80. Sunny > > > From: Sher Bauman > Sent: Monday, April 27, 2009 9:41 AM > To: Breathe-Support > Subject: Re: Sher > > > > > > > Sunny... I understand having so many drs. So do I and I know most on the board do the same. I think the days of one pcp are long gone. > I can't help but wonder here, since you have all these drs what is the REAL reason you are not seeing one of them? The pulmo probably won't treat anything beyond his specialty. > I agree with your husband, you need to go to ER and find out what's wrong. You may have a bowel blockage or many other things could cause what you are feeling... > Sunny, you are dx yourself and that can lead to trouble. More trouble than you are having. > I for one, am not understanding why you don't see the appropriate dr or go to ER. > What point are you making by not going? > Come on girl, go get some medical attention! > MamaSher; 70, IPF 3-06, OR. > Nasturtiums > Don't fret about tomorrow, God is already there! > > 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 27, 2009 Report Share Posted April 27, 2009 And i have a feeling that your hubby makes too much for you to qualify for medical assistance. You are in that loop or gap or whatever you want to call it. Can't afford stuff, but make too much for welfare, where lots of stuff would be paid for. Sucks! doesn't it! Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 inactive 4/09 www.transplantfund.org--- Subject: Re: SherTo: Breathe-Support Date: Monday, April 27, 2009, 7:21 PM Okay Sher, you want the REAL reason I don't see all the doctor's I am supposed to and would rather suffer than go to the ER. Well, it is embarrassing but since you sounded so strange about it I will tell you. MONEY! My husband works an 80 week. 1/3 goes to my meds and his BP meds, then theirs housing costs, food, electric, water, phone, GASOLINE, so every time I go to the ER it is $150 co-pay. We have insurance but it doesn't pay that well and we have to buy our RX then wait 60 days to be reimbursed. There is a co-pay every time I see a doctor plus I owe 20% after that. They want their money up front usually. So there you have it, we are poor. We each cheap and do every thing else in the least expensive manner possible. The ONE luxury that I allow myself is internet. We owe so much in medical bills right now because of me that our credit is kaput. We rely on the church and friends to help feed us. Our car was given to us by someone at church. Do you get it? I can not afford to be sick anymore and maybe it would be better if I just gave up and quit being such a burden to Rich. I see that he e-mailed you and it hurt my heart to see how scared he is. Yes, you and Beth are right. My GI doc told me on the phone today to go directly to an ER but I keep waiting thinking my bowels will move and I will quit vomiting and being in pain. Does anyone else out there understand? I am tired!!! And I love my husband so much that it is killing me to watch him work so many hours and side jobs, clean, cook and stress about me. I am sorry but the pain is just too much, I feel to weak and am frankly depressed over being treated like a number by doctors. My health is complicated to no GP wants to deal with me. The one I have currently every time I see him it's like he's saying "What now?" I have spent the last two hours since I woke up praying and I still don't know what to do. No, I won't give up and do something stupid because heaven awaits but for now the above are my thoughts. Sher, if you thought there was some nefarious reason I am not seeking adequate care there isn't. Not to mention I can't seem to find any kind of doctor that cares the littlest bit about anything but giving me 5 minutes for $80. Sunny From: Sher Bauman Sent: Monday, April 27, 2009 9:41 AM To: Breathe-Support@ yahoogroups. com Subject: Re: Sher Sunny... I understand having so many drs. So do I and I know most on the board do the same. I think the days of one pcp are long gone. I can't help but wonder here, since you have all these drs what is the REAL reason you are not seeing one of them? The pulmo probably won't treat anything beyond his specialty. I agree with your husband, you need to go to ER and find out what's wrong. You may have a bowel blockage or many other things could cause what you are feeling... Sunny, you are dx yourself and that can lead to trouble. More trouble than you are having. I for one, am not understanding why you don't see the appropriate dr or go to ER. What point are you making by not going? Come on girl, go get some medical attention! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! 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 27, 2009 Report Share Posted April 27, 2009 Sunny...oh my goodness. I overstepped my bounds. I apologize to you. Perhaps it helps to 'unload' and it's ok. I understand because I live the same thing. Overwhelming medical bills and Rx that are so high I fell in the donut hole last year and then had to pay 100% for all RX. I apologize for 'sounding strange' to you. I was feeling great concern for you and yes, trying my best to prompt you to go to the ER for medical attention. Bruce and MB both said the same thing but perhaps in a more accepting way. I am known for being outspoken. We sometimes don't have time for chit-chat when there is an emergency and I think you do need immediate care. You are worth that. I do think you are overwhelmed as any of us would be in your same situation and you owe me nor anyone else an explanation of your personal life. I want good care for you in this post as I did in my last post. God Bless you. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! 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...
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