Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 THANKS SHER , i REALLY APPRECIATE all your words of encouragement. I know I have to be strong and get him through this ,I'm just so tired ,and sob all the time. It really is a blessing to have you to chat with, and I have learned so much from the group.It's terrible that we all have something in common to share but its wonderful that we all have each other god bless everyone. Kay R.52.ipf.09,PA To: Breathe-Support Sent: Saturday, March 28, 2009 2:08:00 PMSubject: Re: sher Kay.... I'm so very sorry to hear of your family situation. I hope your husband is recovering well from both the heart surgery and the amputation. You really have a load on your shoulders and I can understand why you hesitate to burden him with more. If you ever want to talk, email me at bofus (AT) wbcable (DOT) net and if I can at least listen, I'm good at that. I won't even interrupt you...teehee. s for you! 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 29, 2009 Report Share Posted March 29, 2009 THANKS SHER , i REALLY APPRECIATE all your words of encouragement. I know I have to be strong and get him through this ,I'm just so tired ,and sob all the time. It really is a blessing to have you to chat with, and I have learned so much from the group.It's terrible that we all have something in common to share but its wonderful that we all have each other god bless everyone. Kay R.52.ipf.09,PA To: Breathe-Support Sent: Saturday, March 28, 2009 2:08:00 PMSubject: Re: sher Kay.... I'm so very sorry to hear of your family situation. I hope your husband is recovering well from both the heart surgery and the amputation. You really have a load on your shoulders and I can understand why you hesitate to burden him with more. If you ever want to talk, email me at bofus (AT) wbcable (DOT) net and if I can at least listen, I'm good at that. I won't even interrupt you...teehee. s for you! 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 17, 2009 Report Share Posted April 17, 2009 thank's Caro I'll be hangenBrett Hang in there Brett. Hugs from me, too. Your daughter is a little doll!! She is so cute!! Absolutely adorable!! CaroOSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support Sent: Thursday, April 16, 2009 3:29:49 PMSubject: Re: sher Brett... hugs to you and your sweet family! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: sher treatments are all done I've gone through four different treatment options with no success and then tried 21-days of this wild juice that sells for around 38 dollars a bottle in which I had to drink a bottle a day along with a half a gallon of water (not all at once) so I have tried it all. I feel pretty good and some days I don't , at this point Im just trying to live my life the best I can. were trying to figure out social security disability benefits right now so I can stop working I just don't have the energy left over for my family when I get done with work , and it seems to take the whole weekend to regain my strength just to start all over on monday . but were getting by Thanks Brett. How are treatments going? I pray for your family and God's Blessings on you. 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." <pastedGraphic. tiff> yes but I don't have them on my computer yet Oh Brett she is growing so fast, and so beautiful. I am so glad to hear from you. God's continued Blessings. OH did you take Easter pictures of Sunshine? 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." <pastedGraphic. tiff> Hello Mama just take some advise from my daughter here and get some rest and relax I'll be thinking of you , lot's of love. Brett P.S. let me know if you can't see the picture Brett Bowser 40 MI. familial UIP/IPF 11/07 stage 4 lung cancer 7/08 <IMG_0066.jpg> Brett Bowser brett (AT) vectordist (DOT) com Brett Bowser brett (AT) vectordist (DOT) com Brett Bowserbrett@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2009 Report Share Posted April 17, 2009 Sher growing up, and as long as i knew her, my mother drank prune juice every morning Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 inactive 4/09 www.transplantfund.org--- Subject: Re: SherTo: Breathe-Support Date: Wednesday, April 15, 2009, 9:33 PM BJ... do take care, as I know you will. I'm back on 5 prunes/day. I like 'em. Get well soon! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! 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 24, 2009 Report Share Posted April 24, 2009 Sher, I think what Sunny meant when she said 'chronic aspiration neuritis' is actually chronic aspiration pneumonitis. She posted that she was unsure of the spelling. There is no type of neuritis (nerve inflammation) that's caused by aspiration. However Chronic aspiration pneumonitis is actually something that exists and is treatable. Unfortunately the damage done to Sunny's lungs can't be undone but further damage can be prevented with the proper treatment. As for her pulmo refusing the 24 hour oximeter....in my book it's infuriating. Especially because he's not even given her a proper 6 minute walk, instead basing her O2 needs assessment on "a couple of laps around his desk". That's just flat out unacceptable and in my opinion downright dangerous. He did a proper assessment of her needs at night, why is he ignoring what she might need during the day, ignoring what she reports her oximeter reads with different activities. It's situations like this that emphasize the importance of sticking up for ourselves and changing doctors if one just flat refuses to meet our needs. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Friday, April 24, 2009 1:53:57 PMSubject: Re: Update after pulmo doc - hate to even call him a doctor Sunny.... I so sense your frustration and anxiety. I'm sending you a special big MamaSher hug! Out of curiosity... why would pulmodude 'refuse' the 24 oximeter? Or....perhaps he doesn't need the information. You already know your nighttime O2 is dropping and you will be going on night O2. I'm betting he doesn't need anymore "nighttime" info. You say 'now it's just PF'.....isn' t CAN something different? I'm thinking that's why pulmodude referred you to Gastro. I know how frustrating it is to see one doc then another doc...everyone has a specialty now. I've posted about this before. (If your gastro found PF he'd send you to the pulmodude... .) Hang on Sunny. One day at a time or in our cases, one doc at a time. You'll feel better after you've seen the Gastro guy. Our biggest job is to advocate for ourselves and that usually means coordinating our care and where we get it. I have a Gastroguy too. Keep on keepin' on friend. 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 25, 2009 Report Share Posted April 25, 2009 Mama Sher, I hate to whine but I have had a major surgery every year for the past 4 so this will make 5 in 5 years. My pulmo dude said, and I quote: I don't even give 24 oximeter to my end stage cancer patients. WHAT? I will be seeing my GI guy next week and him I have had forever and trust completely so I know he will give me the straight scoop. Pulmo doc said that O2 falling to 83 is not a big deal and happens to a lot of people and he couldn't justify putting me on daytime O2. As far as the 24 hour test, he told me I could go buy one at REI if I was that concerned about it. He also won't give me a perm. handicap placard and I can't understand why. He keeps giving me temp ones. I would say 40% lung capacity qualifies me for this at the very least. I can't walk far at all without being short of breath. I also had a bad scare today. I bent over and when I stood up my vision went dark and if my husband hadn't of caught me I would have been down. Pulmo guy is also not concerned that 10 weeks ago I weighed 220 lbs at his office and yesterday I weighed in on the same scale 175. That seems like a lot of weight to drop in a very short time. When I mentioned that it worried me he said "water weight probably". I was floored. I had a complete hysto last year so I can't imagine why I would retain 45 lbs of water. Can you? My husband was so mad when we left I thought he was going to have a stroke. Pulmo jerk's last words were to the effect that I was out of his hands now since my lung problems are caused by a GI condition but if I get worse symptoms I can call him in a couple of months. MB is right, I spelled it wrong and she got it right. I was pretty flustered still when I sent that e-mail. Plus pulmo jerk says the surgery is "Intense" but it sounds pretty straight forward and safe to me. Oh and I asked him if he had contacted my cardio doc since he said he was going to because of his concern over my pulse rate. He said "No, didn't get to it but your rate went down pretty quickly so I wouldn't worry about it." First he says it's a concern then he says it's not. All I know for sure is that I am having my GI recommend a different pulmo doc. I saw the comprehensive MRI report that said IPF and the biopsy results (done at a local small lab) so I am fairly confident of that diagnoses. To be honest I am scared - badly. I have a severely compromised immune system and because of my Lupus no paid drugs work for me. I don't even bother with them anymore and just deal with it. I wish I knew how much pain there is going to be after the surgery and how long I can expect to be down. Sorry for unloading, just very scared and depressed. And feel like I have been treated like dirt from the first time I saw pulmo guy. I mean seriously, he won't even make eye contact with me. Thank all you guys for being there for me. Without your wisdom and support I would be even more lost. Blessing to you all. Sunny PF 09, CAN 09, Lupus 05, Arthritis 05, Sjogrens 05, Diabetes 06, Hyperthyroidism 07 and on and on, Idaho From: Sher Bauman Sent: Friday, April 24, 2009 1:46 PM To: Breathe-Support Subject: Re: Sher Absolutely MB. I've been reading the posts, Sunny's and yours so I'm caught up on what is happening there w/her. We sure do need to stick up for ourselves...and each other. 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 25, 2009 Report Share Posted April 25, 2009 Mama Sher, I hate to whine but I have had a major surgery every year for the past 4 so this will make 5 in 5 years. My pulmo dude said, and I quote: I don't even give 24 oximeter to my end stage cancer patients. WHAT? I will be seeing my GI guy next week and him I have had forever and trust completely so I know he will give me the straight scoop. Pulmo doc said that O2 falling to 83 is not a big deal and happens to a lot of people and he couldn't justify putting me on daytime O2. As far as the 24 hour test, he told me I could go buy one at REI if I was that concerned about it. He also won't give me a perm. handicap placard and I can't understand why. He keeps giving me temp ones. I would say 40% lung capacity qualifies me for this at the very least. I can't walk far at all without being short of breath. I also had a bad scare today. I bent over and when I stood up my vision went dark and if my husband hadn't of caught me I would have been down. Pulmo guy is also not concerned that 10 weeks ago I weighed 220 lbs at his office and yesterday I weighed in on the same scale 175. That seems like a lot of weight to drop in a very short time. When I mentioned that it worried me he said "water weight probably". I was floored. I had a complete hysto last year so I can't imagine why I would retain 45 lbs of water. Can you? My husband was so mad when we left I thought he was going to have a stroke. Pulmo jerk's last words were to the effect that I was out of his hands now since my lung problems are caused by a GI condition but if I get worse symptoms I can call him in a couple of months. MB is right, I spelled it wrong and she got it right. I was pretty flustered still when I sent that e-mail. Plus pulmo jerk says the surgery is "Intense" but it sounds pretty straight forward and safe to me. Oh and I asked him if he had contacted my cardio doc since he said he was going to because of his concern over my pulse rate. He said "No, didn't get to it but your rate went down pretty quickly so I wouldn't worry about it." First he says it's a concern then he says it's not. All I know for sure is that I am having my GI recommend a different pulmo doc. I saw the comprehensive MRI report that said IPF and the biopsy results (done at a local small lab) so I am fairly confident of that diagnoses. To be honest I am scared - badly. I have a severely compromised immune system and because of my Lupus no paid drugs work for me. I don't even bother with them anymore and just deal with it. I wish I knew how much pain there is going to be after the surgery and how long I can expect to be down. Sorry for unloading, just very scared and depressed. And feel like I have been treated like dirt from the first time I saw pulmo guy. I mean seriously, he won't even make eye contact with me. Thank all you guys for being there for me. Without your wisdom and support I would be even more lost. Blessing to you all. Sunny PF 09, CAN 09, Lupus 05, Arthritis 05, Sjogrens 05, Diabetes 06, Hyperthyroidism 07 and on and on, Idaho From: Sher Bauman Sent: Friday, April 24, 2009 1:46 PM To: Breathe-Support Subject: Re: Sher Absolutely MB. I've been reading the posts, Sunny's and yours so I'm caught up on what is happening there w/her. We sure do need to stick up for ourselves...and each other. 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 25, 2009 Report Share Posted April 25, 2009 Mama Sher, I hate to whine but I have had a major surgery every year for the past 4 so this will make 5 in 5 years. My pulmo dude said, and I quote: I don't even give 24 oximeter to my end stage cancer patients. WHAT? I will be seeing my GI guy next week and him I have had forever and trust completely so I know he will give me the straight scoop. Pulmo doc said that O2 falling to 83 is not a big deal and happens to a lot of people and he couldn't justify putting me on daytime O2. As far as the 24 hour test, he told me I could go buy one at REI if I was that concerned about it. He also won't give me a perm. handicap placard and I can't understand why. He keeps giving me temp ones. I would say 40% lung capacity qualifies me for this at the very least. I can't walk far at all without being short of breath. I also had a bad scare today. I bent over and when I stood up my vision went dark and if my husband hadn't of caught me I would have been down. Pulmo guy is also not concerned that 10 weeks ago I weighed 220 lbs at his office and yesterday I weighed in on the same scale 175. That seems like a lot of weight to drop in a very short time. When I mentioned that it worried me he said "water weight probably". I was floored. I had a complete hysto last year so I can't imagine why I would retain 45 lbs of water. Can you? My husband was so mad when we left I thought he was going to have a stroke. Pulmo jerk's last words were to the effect that I was out of his hands now since my lung problems are caused by a GI condition but if I get worse symptoms I can call him in a couple of months. MB is right, I spelled it wrong and she got it right. I was pretty flustered still when I sent that e-mail. Plus pulmo jerk says the surgery is "Intense" but it sounds pretty straight forward and safe to me. Oh and I asked him if he had contacted my cardio doc since he said he was going to because of his concern over my pulse rate. He said "No, didn't get to it but your rate went down pretty quickly so I wouldn't worry about it." First he says it's a concern then he says it's not. All I know for sure is that I am having my GI recommend a different pulmo doc. I saw the comprehensive MRI report that said IPF and the biopsy results (done at a local small lab) so I am fairly confident of that diagnoses. To be honest I am scared - badly. I have a severely compromised immune system and because of my Lupus no paid drugs work for me. I don't even bother with them anymore and just deal with it. I wish I knew how much pain there is going to be after the surgery and how long I can expect to be down. Sorry for unloading, just very scared and depressed. And feel like I have been treated like dirt from the first time I saw pulmo guy. I mean seriously, he won't even make eye contact with me. Thank all you guys for being there for me. Without your wisdom and support I would be even more lost. Blessing to you all. Sunny PF 09, CAN 09, Lupus 05, Arthritis 05, Sjogrens 05, Diabetes 06, Hyperthyroidism 07 and on and on, Idaho From: Sher Bauman Sent: Friday, April 24, 2009 1:46 PM To: Breathe-Support Subject: Re: Sher Absolutely MB. I've been reading the posts, Sunny's and yours so I'm caught up on what is happening there w/her. We sure do need to stick up for ourselves...and each other. 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 28, 2009 Report Share Posted April 28, 2009 Sunny, a few tears of happiness wet my checks as I read your post. Your positive attitude will sustain you through many a battle. Like all of the members of this board, I have been very concerned for you and am relieved to hear your new attitude and determination. Jack79/IPF - UIP/dx06/05 Maine To: Breathe-Support Sent: Tuesday, April 28, 2009 2:03:30 AMSubject: Re: Sher Mama Sher, You probably won't get this until tomorrow but I am sorry I unloaded on you. We just got back from the ER so I am a little bit "happy" right now. No pain at all! The did an NG tube in my nose down to my stomach and poured in 2 gallons of Ultra Go Lightly. Thankfully they drugged me up really good first. I am now all nice and cleaned out. They were worried because my O2 was low, pulse was too high, potassium was too low, iron was too low; oh well you get the picture. I was terribly dehydrated so I am sure that was most of the problem. When I first got there I had an irregular heart beat but by the time I left everything was pretty settled down. Of course I left with a handful of scripts but I was just thankful to leave because the doctor was insisting that he admit me but I told him that I honestly could not afford it and promised to follow his instructions to the letter and see my doctor tomorrow. Actually won't see GI until Wed. afternoon but close enough. I have to go see my primary because my blood sugar was high. That seems weird since I haven't been eating but I guess it's not unusual. I did want to tell you that Lupus can cause your veins to be very leathery and hard to get a needle in. Last surgery I had they poked me 12 times before finally going in my foot which they hate to do because of infection risk. Luckily this time it was only 6 pokes before they got the IV in. Now, my plan: 1st quit feeling sorry for myself, 2nd get references, recommendations ect... and find a new GP to oversee my total care, 3rd find a new pulmonologist, 4th start taking better care of my body and 5th start opening my mouth and letting doctors know exactly how I feel. I tend to be overawed or scared when I am in their office and don't argue or ask questions. That is going to change now! Thanks to everyone who said ER. It was exactly the right thing to do. When I talked to my GI he told me to go directly to the ER. Sometimes I am very thick headed. Joyce you are exactly right. Rich makes too much money for us to get state help, I am waiting on SSDI and every place I have called for help says no because we have insurance. If we didn't we could get all kinds of help. Seems like they would want to help those that they only had to pay part of the cost. If Rich quit working we could also get tons of help but that will never happen. It seems a shame that in our country the folks who really try are the ones who get shafted. I have a very hard time with the fact that I have to fight for my SSI. I was widowed young with three small daughters but didn't go on welfare. I worked and put myself through college and received a degree in Business Management. I wanted to be able to make enough to give them everything. I ended up as an underwriter for a very large insurer making major money so the loss of the ability to work and bring home a paycheck has been pretty hard on me. That SSDI money is mine. I paid it in for over 20 years and now have to fight to get it. Very sad! But I have realized that I had way too much of my self esteem tied in to my job and paycheck. I have to find the value in myself that has nothing to do with my education and job skills. That is a major part of my depression, feeling worthless and useless but I AM NOT! I am a Saint and Daughter of the King. God loves me and knows exactly what's going on and will pull me through. Goodness I am woozy and rambling so I will shut up for now and go to bed before I fall asleep at the keyboard. Love all of you guys and appreciate your caring and don't mind a bit if I need my backside chewed out to set me straight. Sunny From: Sher Bauman Sent: Monday, April 27, 2009 6:53 PM To: Breathe-Support@ yahoogroups. com Subject: Re: Sher 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...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 Sunny, a few tears of happiness wet my checks as I read your post. Your positive attitude will sustain you through many a battle. Like all of the members of this board, I have been very concerned for you and am relieved to hear your new attitude and determination. Jack79/IPF - UIP/dx06/05 Maine To: Breathe-Support Sent: Tuesday, April 28, 2009 2:03:30 AMSubject: Re: Sher Mama Sher, You probably won't get this until tomorrow but I am sorry I unloaded on you. We just got back from the ER so I am a little bit "happy" right now. No pain at all! The did an NG tube in my nose down to my stomach and poured in 2 gallons of Ultra Go Lightly. Thankfully they drugged me up really good first. I am now all nice and cleaned out. They were worried because my O2 was low, pulse was too high, potassium was too low, iron was too low; oh well you get the picture. I was terribly dehydrated so I am sure that was most of the problem. When I first got there I had an irregular heart beat but by the time I left everything was pretty settled down. Of course I left with a handful of scripts but I was just thankful to leave because the doctor was insisting that he admit me but I told him that I honestly could not afford it and promised to follow his instructions to the letter and see my doctor tomorrow. Actually won't see GI until Wed. afternoon but close enough. I have to go see my primary because my blood sugar was high. That seems weird since I haven't been eating but I guess it's not unusual. I did want to tell you that Lupus can cause your veins to be very leathery and hard to get a needle in. Last surgery I had they poked me 12 times before finally going in my foot which they hate to do because of infection risk. Luckily this time it was only 6 pokes before they got the IV in. Now, my plan: 1st quit feeling sorry for myself, 2nd get references, recommendations ect... and find a new GP to oversee my total care, 3rd find a new pulmonologist, 4th start taking better care of my body and 5th start opening my mouth and letting doctors know exactly how I feel. I tend to be overawed or scared when I am in their office and don't argue or ask questions. That is going to change now! Thanks to everyone who said ER. It was exactly the right thing to do. When I talked to my GI he told me to go directly to the ER. Sometimes I am very thick headed. Joyce you are exactly right. Rich makes too much money for us to get state help, I am waiting on SSDI and every place I have called for help says no because we have insurance. If we didn't we could get all kinds of help. Seems like they would want to help those that they only had to pay part of the cost. If Rich quit working we could also get tons of help but that will never happen. It seems a shame that in our country the folks who really try are the ones who get shafted. I have a very hard time with the fact that I have to fight for my SSI. I was widowed young with three small daughters but didn't go on welfare. I worked and put myself through college and received a degree in Business Management. I wanted to be able to make enough to give them everything. I ended up as an underwriter for a very large insurer making major money so the loss of the ability to work and bring home a paycheck has been pretty hard on me. That SSDI money is mine. I paid it in for over 20 years and now have to fight to get it. Very sad! But I have realized that I had way too much of my self esteem tied in to my job and paycheck. I have to find the value in myself that has nothing to do with my education and job skills. That is a major part of my depression, feeling worthless and useless but I AM NOT! I am a Saint and Daughter of the King. God loves me and knows exactly what's going on and will pull me through. Goodness I am woozy and rambling so I will shut up for now and go to bed before I fall asleep at the keyboard. Love all of you guys and appreciate your caring and don't mind a bit if I need my backside chewed out to set me straight. Sunny From: Sher Bauman Sent: Monday, April 27, 2009 6:53 PM To: Breathe-Support@ yahoogroups. com Subject: Re: Sher 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...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 To all Newbies: Here what you get on this site: Love, support, knowledge, understanding, caring, a kick in the butt if you need one, people who know exactly what you are going through. Today and everyday I will start my day thanking the Lord I found this site and the wonderful people who belong to it. Because of them I am no longer drowning in self-pity and recrimination but feel like I have started a new chapter in my life called "Take charge of and care of Sunny". No more guilt because I am sick. Not my fault! Love yourself, treat yourself as something precious and treasure each day. It gets better, even if not physically, emotionally. Mama She, I do love you and your attitude. Not a lot of folks can get me thinking about what nonsense is going through my head but you did. You, along with Bruce, Beth and the others are the reason I went to the ER and in their words "It's a good thing you came in when you did." My body was in a very bad downward spiral. No, they did not give me any diagnoses other than severe impaction, vitamin deficiancy, etc... They advised me to seek out my GI and Rheumy immediately. I have already made the appointments. We have insurance but it only pays 80% of ER plus there is $150 co-pay but hey like Bruce (I think) said they have to see me even if I don't have the money. Last night I just said "Sorry, can't pay today, can you please bill me." I was amazed at how easy going they were about it. Now I won't be so reluctant to go to the ER or run around trying to borrow the money before I go. What a blessing! Today my body is still giving me fits but I would be dancing if I could. I feel like I have a second chance to get my medical problems straightened out; right this time. Giving up WAS not and NEVER is the answer! I am woman, hear me roar instead of whimper. Yes, I know there will still be days like that. Didn't mama say so? But thanks to ALL OF YOU I will go forward stronger. So, from my heart, thank you Sher, Jack, Bruce, Joyce, beth, Beverly and all the ones I can't bring to mind right now. Hugs back too all of you and pats on the back for your strength of character and heart. Sunny, PF 09, CAN 09, etc..., Idaho From: Sher Bauman Sent: Tuesday, April 28, 2009 10:15 AM To: Breathe-Support Subject: Re: Sher Sunny.... I am so relieved to find your post this morning saying you went to the ER! And I'm glad you're a 'little bit happy' too... I do get the picture of the problems you were having...thus the urgency to go to ER. Do you not have any insurance to cover hospitalization...especially under 'emergency admittance'? I truly did not know (obviously) that Lupus makes it harder to get an IV in. Thanks for the information. My grmother/mother both had Lupus and they never mentioned it. Of course that was many years ago. I get the same put-off. Our income is barely above poverty level but it's still too much to qualify for the help I need. I understand the battle between finance/needs. Each Govt program has it's own guidelines and most always we fall between the cracks. I understand too about self esteem being tied into what we 'do'. I battled with that for about 3 years after I had to stop working....If I didn't work I thought I wasn't worth anything. Of course now I know that is just not true. For you either. We have value, worth and dignity no matter what we do or don't do. Truly, you and I are not the only ones who are living tight. There are others here on the board who have financial problems too. So did you come home knowing what is causing what you are going through? Your new resolutions sound just great. Keep on keepin' on Sunny. hugs 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 28, 2009 Report Share Posted April 28, 2009 To all Newbies: Here what you get on this site: Love, support, knowledge, understanding, caring, a kick in the butt if you need one, people who know exactly what you are going through. Today and everyday I will start my day thanking the Lord I found this site and the wonderful people who belong to it. Because of them I am no longer drowning in self-pity and recrimination but feel like I have started a new chapter in my life called "Take charge of and care of Sunny". No more guilt because I am sick. Not my fault! Love yourself, treat yourself as something precious and treasure each day. It gets better, even if not physically, emotionally. Mama She, I do love you and your attitude. Not a lot of folks can get me thinking about what nonsense is going through my head but you did. You, along with Bruce, Beth and the others are the reason I went to the ER and in their words "It's a good thing you came in when you did." My body was in a very bad downward spiral. No, they did not give me any diagnoses other than severe impaction, vitamin deficiancy, etc... They advised me to seek out my GI and Rheumy immediately. I have already made the appointments. We have insurance but it only pays 80% of ER plus there is $150 co-pay but hey like Bruce (I think) said they have to see me even if I don't have the money. Last night I just said "Sorry, can't pay today, can you please bill me." I was amazed at how easy going they were about it. Now I won't be so reluctant to go to the ER or run around trying to borrow the money before I go. What a blessing! Today my body is still giving me fits but I would be dancing if I could. I feel like I have a second chance to get my medical problems straightened out; right this time. Giving up WAS not and NEVER is the answer! I am woman, hear me roar instead of whimper. Yes, I know there will still be days like that. Didn't mama say so? But thanks to ALL OF YOU I will go forward stronger. So, from my heart, thank you Sher, Jack, Bruce, Joyce, beth, Beverly and all the ones I can't bring to mind right now. Hugs back too all of you and pats on the back for your strength of character and heart. Sunny, PF 09, CAN 09, etc..., Idaho From: Sher Bauman Sent: Tuesday, April 28, 2009 10:15 AM To: Breathe-Support Subject: Re: Sher Sunny.... I am so relieved to find your post this morning saying you went to the ER! And I'm glad you're a 'little bit happy' too... I do get the picture of the problems you were having...thus the urgency to go to ER. Do you not have any insurance to cover hospitalization...especially under 'emergency admittance'? I truly did not know (obviously) that Lupus makes it harder to get an IV in. Thanks for the information. My grmother/mother both had Lupus and they never mentioned it. Of course that was many years ago. I get the same put-off. Our income is barely above poverty level but it's still too much to qualify for the help I need. I understand the battle between finance/needs. Each Govt program has it's own guidelines and most always we fall between the cracks. I understand too about self esteem being tied into what we 'do'. I battled with that for about 3 years after I had to stop working....If I didn't work I thought I wasn't worth anything. Of course now I know that is just not true. For you either. We have value, worth and dignity no matter what we do or don't do. Truly, you and I are not the only ones who are living tight. There are others here on the board who have financial problems too. So did you come home knowing what is causing what you are going through? Your new resolutions sound just great. Keep on keepin' on Sunny. hugs 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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