Guest guest Posted October 23, 2001 Report Share Posted October 23, 2001 In a message dated 10/23/01 8:04:53 PM Eastern Daylight Time, duodenalswitch writes: << Sharon, a lady that has been on the DS list for quite some time now, > had the BPD over 10 years ago, her mother had it and an aunt. I am > including a link to her page within the DS website but a few days ago > she emailed her story to this list and was quite extensive in her > remarks. > >> If anyone checks this out, you can also see that the reason Sharon had the BPD was because the BPD/DS was not available to her where she lived 10 years ago, but she states in her email that if the BPD/DS had been available, she would have chosen that over the BPD. Was I the only one who caught that she said that? Or do others just choose to ignore that and use her email as justification that the BPD is better? Again, please note - the people who are arguing for the BPD are the ones who already had the BPD/DS. Funny, (not haha) isn't it? Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 She didn't say the BPD was better: she said SHE has had a 10 year satisfactory outcome. She is saying that BPD CAN work. That is the only claim she's making. Marcia Re: Sharon In a message dated 10/23/01 8:04:53 PM Eastern Daylight Time, duodenalswitch writes: << Sharon, a lady that has been on the DS list for quite some time now, > had the BPD over 10 years ago, her mother had it and an aunt. I am > including a link to her page within the DS website but a few days ago > she emailed her story to this list and was quite extensive in her > remarks. > >> If anyone checks this out, you can also see that the reason Sharon had the BPD was because the BPD/DS was not available to her where she lived 10 years ago, but she states in her email that if the BPD/DS had been available, she would have chosen that over the BPD. Was I the only one who caught that she said that? Or do others just choose to ignore that and use her email as justification that the BPD is better? Again, please note - the people who are arguing for the BPD are the ones who already had the BPD/DS. Funny, (not haha) isn't it? Carole ---------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 > If anyone checks this out, you can also see that the reason Sharon had the > BPD was because the BPD/DS was not available to her where she lived 10 years > ago, but she states in her email that if the BPD/DS had been available, she > would have chosen that over the BPD. Was I the only one who caught that she > said that? Or do others just choose to ignore that and use her email as > justification that the BPD is better? Again, please note - the people who > are arguing for the BPD are the ones who already had the BPD/DS. Funny, (not > haha) isn't it? > Carole Carole- I'm not arguing for it, nor am I trying to justify it. I don't think that a straight BPD is just as good as DS. I can't read the minds of those posting, either. I *think* that they are trying to reassure new patients that it is better than the RnY.. but I could definitely be wrong, too. I have stayed out of this argument primarily because I have very strong personal feelings about one of the two surgeons involved.. and I promised Steve and that I'd try to be nice. I DON'T like it, though.. I just can't DO anything about it... except state my POV (in private email) when it is asked. And suggest to that she make it clear on the surgeon's list that the DS is NOT offered by these two surgeons, only the BPD. I was lucky.. I could afford to travel... but not everyone has that option, so they need to know the differences in the two procedures before they spend money on a consult. My .02. Liane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2002 Report Share Posted November 24, 2002 I am sorry that your sister is going through any of this. No one deserves this. I hope that some of the meds are providing comfort. I will keep her in my thoughts, Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 Hi Beth, Thanks for the info, I understand what you are saying . I thought if he read about people with pf , since i don't have it , he would be more inclined to use his o2 and exercise alittle. His wife says he was to use o2 24-7 and he goes in his garage workshop and putts around but breathes really heavy. Worse then me and my asthma.My son said while he slept it was worse . I can tell her and him till i'am blue in the face about o2 and how much better you feel but he just won't use it even though his o2 is in the 80's. I would like to get him on this web site because lung problems of all kinds are discussed here. sharon p asthma ph From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: To: Breathe-Support@ yahoogroups. comDate: Thursday, September 17, 2009, 7:22 AM Congratulations! ! I'm so happy that the SS process went smoothly for you. I had also been told that 'everyone' is denied the first time around when I lived in NY. Thankfully that's not true anywhere and as others have mentioned because SS has something concrete like PFT values to base a decision on many of us would qualify by the time we're diagnosed. That's not to say that some might not have difficulty but it's not the norm. More importantly being able to do the 6 minute walk without O2 is amazing! Congratulations! It's interesting because I'm finding I'm able to use much less oxygen when exercising than I had to when I did rehab 3 years ago. I'm not completely certain what to attribute that to but right now I'm just grateful I don't need to wear the damn venti-mask when I'm walking. I will keep your family and all the jobs situations in my prayers. It's tough out there right now. Look after yourself !! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: kiki boettin <netwiz3 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, September 16, 2009 10:56:06 PMSubject: Disabilty andGood News I don't post to often but I wanted to tell everyone the good news I got today. I had been diagnosed with IPF in 07 . They found out I had ILD from Scleroderma and that I have Sjogrens and Raynauds and they are attacking all my organs. I was on Cytoxan for 5mo and got deathly sick at New Years . I was put on 02 24/7 and felt terrible for months. I had a ct scan done in June and the fibrosis is worse but I started Cellcept and several other meds for my heart. I was able to do the 6 min walk today slowly without 02 and my sat never went below 92, so I am hoping if I can lose some weight maybe it will improve my situation. On the home front my daughter, my son in law and then my son lost their jobs due to the economy. My son got a call from his old boss and he said he has been wanting him to work for him since he left . He is meeting him tomorrow for an interview to see if the job is something he would like. So please say a little prayer for all of them toget a jobs . Now about SS I wasn't going to apply because here in the great state of Illinois it is routine for everyone to get turned down. My friends would nag me non stop so I finally went . It took about 2 hrs with all of my papers and they said I would know in Sept or Oct . This was the end of May . Well I will get my 1st check next month . There were some glitches in getting hospital records to them but it went rather smoothly . So I say try it . I'm sorry about the rambling but I am excited and exhausted. Welcome to all the newbies. I hope to make it to Chattanooga . ipf 2/07 IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 Beth is an over-achiever. But I can say this, she does help keep me inspired to exercise. I don't have a local " exercise buddy " or anything like that. So, I do think of her exercising and say to myself, I must keep up. That doesn't mean I do the same speed or same exercises. It does mean though that I do within my limits what I can and what is appropriate for me. I have had a couple of 5-6 day periods where I was ordered not to exercise (even heavy walking in stores etc) in order to do lab tests. I hated the time off and just felt like I was losing some ability. I was so glad to do the labs and go straight home to the treadmill. Rehab of all sorts is pretty incredible, if you ask me. There was a time you just went home, sat, deteriorated, lost all mobility, and waited to die and thats not just with PF. My ex mother in law is 79 and had open heart surgery July 29. She spent 20 days in ICU, 3 more in the hospital coronary care unit. Her COPD was largely the source of her complications. She's in a skilled nursing and rehab center that we chose because of the rehab. When she left the hospital, she was on 3 lpm of oxygen, now requires none. When she left the hospital she was bedridden and in hospital gown. Now she sits up most of the time, dresses every day, showers every other day, gets wheeled to the dining hall, does 2-3 hours of rehab activities per day, participates in activities, and going to a Big Band event at the Senior center today. When she left the hospital, she couldn't speak clearly, could barely eat, and could have no liquids because of aspiration. Due to speech therapy, she can talk more than you wish sometimes, eat and drink as she pleases. When she left the hospital, her thinking and memory were very poor, now they are much as they were before surgery. When she left the hospital she hadn't walked at all. Now with a stroller she can make a short hall way. This is where she still has a ways to go, but each week is better than the last. Rehab makes so much difference in the quality of life for so many. Regardless of your condition, I encourage professional rehab to put you on the path to being the best you can be (well, most of us are beyond the point of joining the army..lol). I'm fully convinced without exercising the past two years, my mobility would be half or less of what it is. Odd thing is that even though in medical terms I have had some progression, the exercise and activity have enabled me to have no regression in what I'm able to do. In fact it sort of shows up on my PFT's even. My total lung capacity is running contrary (better) to my FEV1 and FVC. Simply I'm breathing deeper even if I can't get quite as much quickly. I'm utilizing what capacity I have better. Omg I use to find those who preached exercise so annoying and pre-PF I never did it. Now, I'm worse than they ever were. > > > >From: Beth mbmurtha (AT) yahoo (DOT) com> > >Subject: > >To: Breathe-Support@ yahoogroups. com > >Date: Thursday, September 17, 2009, 7:22 AM > > > > > > > >Congratulations! ! I'm so happy that the SS process went smoothly for you. I had also been told that 'everyone' is denied the first time around when I lived in NY. Thankfully that's not true anywhere and as others have mentioned because SS has something concrete like PFT values to base a decision on many of us would qualify by the time we're diagnosed. That's not to say that some might not have difficulty but it's not the norm. > > > >More importantly being able to do the 6 minute walk without O2 is amazing! Congratulations! It's interesting because I'm finding I'm able to use much less oxygen when exercising than I had to when I did rehab 3 years ago. I'm not completely certain what to attribute that to but right now I'm just grateful I don't need to wear the damn venti-mask when I'm walking. > > > >I will keep your family and all the jobs situations in my prayers. It's tough out there right now. > > > >Look after yourself !! > > > > Beth > >Moderator > >Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > > ________________________________ > From: kiki boettin netwiz3 (AT) yahoo (DOT) com> > >To: Breathe-Support@ yahoogroups. com > >Sent: Wednesday, September 16, 2009 10:56:06 PM > >Subject: Disabilty andGood News > > > > > >I don't post to often but I wanted to tell everyone the good news I got today. I had been diagnosed with IPF in 07 . They found out I had ILD from Scleroderma and that I have Sjogrens and Raynauds and they are attacking all my organs. I was on Cytoxan for 5mo and got deathly sick at New Years . I was put on 02 24/7 and felt terrible for months. I had a ct scan done in June and the fibrosis is worse but I started Cellcept and several other meds for my heart. I was able to do the 6 min walk today slowly without 02 and my sat never went below 92, so I am hoping if I can lose some weight maybe it will improve my situation. On the home front my daughter, my son in law and then my son lost their jobs due to the economy. My son got a call from his old boss and he said he has been wanting him to work for him since he left . He is meeting him tomorrow for an interview to see if the job is something he would like. So please say a little prayer for all of them to > >get a jobs . Now about SS I wasn't going to apply because here in the great state of Illinois it is routine for everyone to get turned down. My friends would nag me non stop so I finally went . It took about 2 hrs with all of my papers and they said I would know in Sept or Oct . This was the end of May . Well I will get my 1st check next month . There were some glitches in getting hospital records to them but it went rather smoothly . So I say try it . I'm sorry about the rambling but I am excited and exhausted. Welcome to all the newbies. I hope to make it to Chattanooga . > > ipf 2/07 IL > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 Sharon, Absolutely you are right! If he reads about other people with pf it will definitely make him feel less alone and hopefully more comfortable doing what he should do to take care of himself. Encourage him to join! I was just urging caution about comparing one person to another because we are all so different. Sharon would you remind me of how you came to be here? I don't remember and I'm curious since you don't have pf. Hope you have a great day!! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, September 17, 2009 10:51:42 AMSubject: Re: Sharon Hi Beth, Thanks for the info, I understand what you are saying . I thought if he read about people with pf , since i don't have it , he would be more inclined to use his o2 and exercise alittle. His wife says he was to use o2 24-7 and he goes in his garage workshop and putts around but breathes really heavy. Worse then me and my asthma.My son said while he slept it was worse . I can tell her and him till i'am blue in the face about o2 and how much better you feel but he just won't use it even though his o2 is in the 80's. I would like to get him on this web site because lung problems of all kinds are discussed here. sharon p asthma ph From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: To: Breathe-Support@ yahoogroups. comDate: Thursday, September 17, 2009, 7:22 AM Congratulations! ! I'm so happy that the SS process went smoothly for you. I had also been told that 'everyone' is denied the first time around when I lived in NY. Thankfully that's not true anywhere and as others have mentioned because SS has something concrete like PFT values to base a decision on many of us would qualify by the time we're diagnosed. That's not to say that some might not have difficulty but it's not the norm. More importantly being able to do the 6 minute walk without O2 is amazing! Congratulations! It's interesting because I'm finding I'm able to use much less oxygen when exercising than I had to when I did rehab 3 years ago. I'm not completely certain what to attribute that to but right now I'm just grateful I don't need to wear the damn venti-mask when I'm walking. I will keep your family and all the jobs situations in my prayers. It's tough out there right now. Look after yourself !! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: kiki boettin <netwiz3 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, September 16, 2009 10:56:06 PMSubject: Disabilty andGood News I don't post to often but I wanted to tell everyone the good news I got today. I had been diagnosed with IPF in 07 . They found out I had ILD from Scleroderma and that I have Sjogrens and Raynauds and they are attacking all my organs. I was on Cytoxan for 5mo and got deathly sick at New Years . I was put on 02 24/7 and felt terrible for months. I had a ct scan done in June and the fibrosis is worse but I started Cellcept and several other meds for my heart. I was able to do the 6 min walk today slowly without 02 and my sat never went below 92, so I am hoping if I can lose some weight maybe it will improve my situation. On the home front my daughter, my son in law and then my son lost their jobs due to the economy. My son got a call from his old boss and he said he has been wanting him to work for him since he left . He is meeting him tomorrow for an interview to see if the job is something he would like. So please say a little prayer for all of them toget a jobs . Now about SS I wasn't going to apply because here in the great state of Illinois it is routine for everyone to get turned down. My friends would nag me non stop so I finally went . It took about 2 hrs with all of my papers and they said I would know in Sept or Oct . This was the end of May . Well I will get my 1st check next month . There were some glitches in getting hospital records to them but it went rather smoothly . So I say try it . I'm sorry about the rambling but I am excited and exhausted. Welcome to all the newbies. I hope to make it to Chattanooga . ipf 2/07 IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 Sharon There are also some other good groups for general lung issues as well as asthma and COPD specific. You can search yahoo and google. One I have looked at is Huff n Puff. I find it sad some choose not to use oxygen but ultimately its an individual choice. I've sure made enough poor choices in my life. All you can do is suggest and hopefully some day he listens. I think back to my time of diagnosis and oxygen prescription. Had the dangers of low oxygen damaging other organs not been hammered into me, I wouldn't have used oxygen. I was so use to being short of breath and getting around without it. I didn't see those benefits of it until after I was on it. Immediately I saw what I could do easier than without. But it was fear of damage that got me on it. Oh I feel so sorry for ordinary folk. If I'm walking with one of them and I get shorter of breath, I just juice up and add another liter or two of oxygen. They can't do that....lol > > > From: Beth mbmurtha (AT) yahoo (DOT) com> > Subject: > To: Breathe-Support@ yahoogroups. com > Date: Thursday, September 17, 2009, 7:22 AM > > > > > > > > Congratulations! ! I'm so happy that the SS process went smoothly for you. I had also been told that 'everyone' is denied the first time around when I lived in NY. Thankfully that's not true anywhere and as others have mentioned because SS has something concrete like PFT values to base a decision on many of us would qualify by the time we're diagnosed. That's not to say that some might not have difficulty but it's not the norm. > > More importantly being able to do the 6 minute walk without O2 is amazing! Congratulations! It's interesting because I'm finding I'm able to use much less oxygen when exercising than I had to when I did rehab 3 years ago. I'm not completely certain what to attribute that to but right now I'm just grateful I don't need to wear the damn venti-mask when I'm walking. > > I will keep your family and all the jobs situations in my prayers. It's tough out there right now. > > Look after yourself !! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > From: kiki boettin netwiz3 (AT) yahoo (DOT) com> > To: Breathe-Support@ yahoogroups. com > Sent: Wednesday, September 16, 2009 10:56:06 PM > Subject: Disabilty andGood News > > > > I don't post to often but I wanted to tell everyone the good news I got today. I had been diagnosed with IPF in 07 . They found out I had ILD from Scleroderma and that I have Sjogrens and Raynauds and they are attacking all my organs. I was on Cytoxan for 5mo and got deathly sick at New Years . I was put on 02 24/7 and felt terrible for months. I had a ct scan done in June and the fibrosis is worse but I started Cellcept and several other meds for my heart. I was able to do the 6 min walk today slowly without 02 and my sat never went below 92, so I am hoping if I can lose some weight maybe it will improve my situation. On the home front my daughter, my son in law and then my son lost their jobs due to the economy. My son got a call from his old boss and he said he has been wanting him to work for him since he left . He is meeting him tomorrow for an interview to see if the job is something he would like. So please say a little prayer for all of them to > get a jobs . Now about SS I wasn't going to apply because here in the great state of Illinois it is routine for everyone to get turned down. My friends would nag me non stop so I finally went . It took about 2 hrs with all of my papers and they said I would know in Sept or Oct . This was the end of May . Well I will get my 1st check next month . There were some glitches in getting hospital records to them but it went rather smoothly . So I say try it . I'm sorry about the rambling but I am excited and exhausted. Welcome to all the newbies. I hope to make it to Chattanooga . > ipf 2/07 IL > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.