Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Amy, The most I've heard about that I can think of is around 15 or so for someone whose still up and around. But that's only what I've heard of not what's possible. I think this is a very individual process. We each struggle with our own bodies response to our own version of whatever interstitial lung disease we have. It's a struggle for me not to compare myself to others but I continually remind myself not to do that. Just concentrate on what works for you and do that. I would encourage you to look into Hospice. Talk to them, ask lots of questions and remember bringing Hospice into the mix does not mean you are going to die next week. They can be so incredibly helpful, it's worth looking into! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 People are so worried about what they eat between Christmas and the New Year, but they really should be worried about what they eat between the New Year and Christmas. ~Author Unknown To: breathe <Breathe-support >Sent: Saturday, December 27, 2008 11:16:34 PMSubject: LPM Hi: \Everyone: I was just wondering the highest lpm anyone is or has been on? At this time I have had to increase to 10 -15 lpm just to stay in mid 90s. I have began looking into Hospice. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Beth: Hospice is coming out, I have heard such wonderful things about them. I just cannot believe my increase in O2 over the last few weeks. I know my carbond dioxide is high but I need to breath. Thanks for info. Amy To: Breathe-Support Sent: Sunday, December 28, 2008 8:53:46 AMSubject: Re: LPM Amy, The most I've heard about that I can think of is around 15 or so for someone whose still up and around. But that's only what I've heard of not what's possible. I think this is a very individual process. We each struggle with our own bodies response to our own version of whatever interstitial lung disease we have. It's a struggle for me not to compare myself to others but I continually remind myself not to do that. Just concentrate on what works for you and do that. I would encourage you to look into Hospice. Talk to them, ask lots of questions and remember bringing Hospice into the mix does not mean you are going to die next week. They can be so incredibly helpful, it's worth looking into! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 People are so worried about what they eat between Christmas and the New Year, but they really should be worried about what they eat between the New Year and Christmas. ~Author Unknown From: Amy Dawn <amy7675 (AT) yahoo (DOT) com>To: breathe <Breathe-support@ yahoogroups. com>Sent: Saturday, December 27, 2008 11:16:34 PMSubject: LPM Hi: \Everyone: I was just wondering the highest lpm anyone is or has been on? At this time I have had to increase to 10 -15 lpm just to stay in mid 90s. I have began looking into Hospice. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Amy. ... I just want to send a hug to you. I'm thinking it's a big step to call Hospice but I have great faith in most of them. Don't forget our faithful "list of questions" and that will help in feeling comfortable with them I think. There have been many who went to Hospice. I think Vicky is the latest. She seems to be doing ok again, right now anyway. I'm sorry for the progression Amy. Hugs and prayers. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! LPM Hi: \Everyone: I was just wondering the highest lpm anyone is or has been on? At this time I have had to increase to 10 -15 lpm just to stay in mid 90s. I have began looking into Hospice. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Amy You scared me a bit with the " I know my carbon dioxide is high " . Do you have COPD or Asthma as well? Have you talked to the doctor about the increase in needs. While we say that typically you don't run much risk of over-oxygenation with an ILD, you do with an obstructive disease or obstruction of another form. There is a huge difference between 10 lpm and 15 lpm so thats a pretty wide range. Now I did have one friend who was on 10 lpm sitting and 15 lpm moving about and still was getting out and around occasionally so it does vary widely. Changes can come suddenly because of deterioration due to the disease but they can for other reasons as well. If you haven't seen your pulmonologist very recently, please do so. Now, as to the other part, I'm a strong believer in hospice and that is the way I intend to spend my last time whether it's a month or years. I have already talked some, just to learn. I would certainly advise that. Also, talk to more than one and compare your comfort with them. > > Beth: Hospice is coming out, I have heard such wonderful things about them. I just cannot believe my increase in O2 over the last few weeks.. I know my carbond dioxide is high but I need to breath. Thanks for info. > Amy > > > > > ________________________________ > From: Beth mbmurtha@... > To: Breathe-Support > Sent: Sunday, December 28, 2008 8:53:46 AM > Subject: Re: LPM > > > Amy, > The most I've heard about that I can think of is around 15 or so for someone whose still up and around. But that's only what I've heard of not what's possible. I think this is a very individual process. We each struggle with our own bodies response to our own version of whatever interstitial lung disease we have. It's a struggle for me not to compare myself to others but I continually remind myself not to do that. Just concentrate on what works for you and do that. > > I would encourage you to look into Hospice. Talk to them, ask lots of questions and remember bringing Hospice into the mix does not mean you are going to die next week. They can be so incredibly helpful, it's worth looking into! > > Beth in North Carolina > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > People are so worried about what they eat between Christmas and the New Year, but they really should be worried about what they eat between the New Year and Christmas. ~Author Unknown > > > > > ________________________________ > From: Amy Dawn amy7675 (AT) yahoo (DOT) com> > To: breathe > Sent: Saturday, December 27, 2008 11:16:34 PM > Subject: LPM > > > Hi: \Everyone: I was just wondering the highest lpm anyone is or has been on? At this time I have had to increase to 10 -15 lpm just to stay in mid 90s. I have began looking into Hospice. > Amy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Hi Bruce: No copd just idiopathic pulmonary fibrosis. I was doing fine with 4-6 lpm about 3 weeks ago then the sodium leval dropping from so mush lasix and have not been the same since. Hospice has come out and I think it was a good choice. It is just so hard to breath. I do not think a lot of health prof. get confussed over restrictive (we have discussed this) I was being told too much o2 etc you can go as low as 88 etc well if I breath better at 95 I think you know what I am saying. I am just so worn out. Amy To: Breathe-Support Sent: Sunday, December 28, 2008 12:18:09 PMSubject: Re: LPM AmyYou scared me a bit with the "I know my carbon dioxide is high". Do youhave COPD or Asthma as well? Have you talked to the doctor about theincrease in needs. While we say that typically you don't run much riskof over-oxygenation with an ILD, you do with an obstructive disease orobstruction of another form. There is a huge difference between 10 lpmand 15 lpm so thats a pretty wide range. Now I did have one friend whowas on 10 lpm sitting and 15 lpm moving about and still was getting outand around occasionally so it does vary widely. Changes can comesuddenly because of deterioration due to the disease but they can forother reasons as well. If you haven't seen your pulmonologist veryrecently, please do so.Now, as to the other part, I'm a strong believer in hospice and that isthe way I intend to spend my last time whether it's a month or years. Ihave already talked some, just to learn. I would certainly advise that.Also, talk to more than one and compare your comfort with them.>> Beth: Hospice is coming out, I have heard such wonderful thingsabout them. I just cannot believe my increase in O2 over the last fewweeks.. I know my carbond dioxide is high but I need to breath. Thanksfor info.> Amy>>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Sunday, December 28, 2008 8:53:46 AM> Subject: Re: LPM>>> Amy,> The most I've heard about that I can think of is around 15 or so forsomeone whose still up and around. But that's only what I've heard ofnot what's possible. I think this is a very individual process. We eachstruggle with our own bodies response to our own version of whateverinterstitial lung disease we have. It's a struggle for me not to comparemyself to others but I continually remind myself not to do that. Justconcentrate on what works for you and do that.>> I would encourage you to look into Hospice. Talk to them, ask lots ofquestions and remember bringing Hospice into the mix does not mean youare going to die next week. They can be so incredibly helpful, it'sworth looking into!>> Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>> People are so worried about what they eat between Christmas and theNew Year, but they really should be worried about what they eat betweenthe New Year and Christmas. ~Author Unknown>>>>> ____________ _________ _________ __> From: Amy Dawn amy7675 (AT) yahoo (DOT) com>> To: breathe <Breathe-support@ yahoogroups. com>> Sent: Saturday, December 27, 2008 11:16:34 PM> Subject: LPM>>> Hi: \Everyone: I was just wondering the highest lpm anyone is or hasbeen on? At this time I have had to increase to 10 -15 lpm just to stayin mid 90s. I have began looking into Hospice.> Amy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Amy, The other thing that occurs to me is to ask if you have been checked recently for pulmonary hypertension. This is a very common complication of pulmonary fibrosis and can sometimes go undiagnosed for a long time because the symptoms mimic those caused by a progression of our lung disease. If you haven't had one recently you might want to ask your doctor about an echocardiogram to assess the pressure in your pulmonary artery. Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 People are so worried about what they eat between Christmas and the New Year, but they really should be worried about what they eat between the New Year and Christmas. ~Author Unknown To: Breathe-Support Sent: Sunday, December 28, 2008 1:49:12 PMSubject: Re: Re: LPM Hi Bruce: No copd just idiopathic pulmonary fibrosis. I was doing fine with 4-6 lpm about 3 weeks ago then the sodium leval dropping from so mush lasix and have not been the same since. Hospice has come out and I think it was a good choice. It is just so hard to breath. I do not think a lot of health prof. get confussed over restrictive (we have discussed this) I was being told too much o2 etc you can go as low as 88 etc well if I breath better at 95 I think you know what I am saying. I am just so worn out. Amy From: Bruce Moreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, December 28, 2008 12:18:09 PMSubject: Re: LPM AmyYou scared me a bit with the "I know my carbon dioxide is high". Do youhave COPD or Asthma as well? Have you talked to the doctor about theincrease in needs. While we say that typically you don't run much riskof over-oxygenation with an ILD, you do with an obstructive disease orobstruction of another form. There is a huge difference between 10 lpmand 15 lpm so thats a pretty wide range. Now I did have one friend whowas on 10 lpm sitting and 15 lpm moving about and still was getting outand around occasionally so it does vary widely. Changes can comesuddenly because of deterioration due to the disease but they can forother reasons as well. If you haven't seen your pulmonologist veryrecently, please do so.Now, as to the other part, I'm a strong believer in hospice and that isthe way I intend to spend my last time whether it's a month or years. Ihave already talked some, just to learn. I would certainly advise that.Also, talk to more than one and compare your comfort with them.>> Beth: Hospice is coming out, I have heard such wonderful thingsabout them. I just cannot believe my increase in O2 over the last fewweeks.. I know my carbond dioxide is high but I need to breath. Thanksfor info.> Amy>>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Sunday, December 28, 2008 8:53:46 AM> Subject: Re: LPM>>> Amy,> The most I've heard about that I can think of is around 15 or so forsomeone whose still up and around. But that's only what I've heard ofnot what's possible. I think this is a very individual process. We eachstruggle with our own bodies response to our own version of whateverinterstitial lung disease we have. It's a struggle for me not to comparemyself to others but I continually remind myself not to do that. Justconcentrate on what works for you and do that.>> I would encourage you to look into Hospice. Talk to them, ask lots ofquestions and remember bringing Hospice into the mix does not mean youare going to die next week. They can be so incredibly helpful, it'sworth looking into!>> Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>> People are so worried about what they eat between Christmas and theNew Year, but they really should be worried about what they eat betweenthe New Year and Christmas. ~Author Unknown>>>>> ____________ _________ _________ __> From: Amy Dawn amy7675 (AT) yahoo (DOT) com>> To: breathe <Breathe-support@ yahoogroups. com>> Sent: Saturday, December 27, 2008 11:16:34 PM> Subject: LPM>>> Hi: \Everyone: I was just wondering the highest lpm anyone is or hasbeen on? At this time I have had to increase to 10 -15 lpm just to stayin mid 90s. I have began looking into Hospice.> Amy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Thank you, I have heard so many good things about Hospice. To: Breathe-Support Sent: Sunday, December 28, 2008 11:51:25 AMSubject: Re: LPM Amy. ... I just want to send a hug to you. I'm thinking it's a big step to call Hospice but I have great faith in most of them. Don't forget our faithful "list of questions" and that will help in feeling comfortable with them I think. There have been many who went to Hospice. I think Vicky is the latest. She seems to be doing ok again, right now anyway. I'm sorry for the progression Amy. Hugs and prayers. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! LPM Hi: \Everyone: I was just wondering the highest lpm anyone is or has been on? At this time I have had to increase to 10 -15 lpm just to stay in mid 90s. I have began looking into Hospice. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Amy There's something more going on and I'd urge you to get to a pulmonologist quickly. While we take sudden downturns, going from 4-6 to 10-15 in three weeks just sounds like need for looking further at you. There are other causes that can cause dramatic increase in shortness of breath. > > > > Beth: Hospice is coming out, I have heard such wonderful things > about them. I just cannot believe my increase in O2 over the last few > weeks.. I know my carbond dioxide is high but I need to breath. Thanks > for info. > > Amy > > > > > > > > > > ____________ _________ _________ __ > > From: Beth mbmurtha@ > > To: Breathe-Support@ yahoogroups.. com > > Sent: Sunday, December 28, 2008 8:53:46 AM > > Subject: Re: LPM > > > > > > Amy, > > The most I've heard about that I can think of is around 15 or so for > someone whose still up and around. But that's only what I've heard of > not what's possible. I think this is a very individual process. We each > struggle with our own bodies response to our own version of whatever > interstitial lung disease we have. It's a struggle for me not to compare > myself to others but I continually remind myself not to do that. Just > concentrate on what works for you and do that. > > > > I would encourage you to look into Hospice. Talk to them, ask lots of > questions and remember bringing Hospice into the mix does not mean you > are going to die next week. They can be so incredibly helpful, it's > worth looking into! > > > > Beth in North Carolina > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > People are so worried about what they eat between Christmas and the > New Year, but they really should be worried about what they eat between > the New Year and Christmas. ~Author Unknown > > > > > > > > > > ____________ _________ _________ __ > > From: Amy Dawn amy7675 (AT) yahoo (DOT) com> > > To: breathe > > Sent: Saturday, December 27, 2008 11:16:34 PM > > Subject: LPM > > > > > > Hi: \Everyone: I was just wondering the highest lpm anyone is or has > been on? At this time I have had to increase to 10 -15 lpm just to stay > in mid 90s. I have began looking into Hospice. > > Amy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Amy There's something more going on and I'd urge you to get to a pulmonologist quickly. While we take sudden downturns, going from 4-6 to 10-15 in three weeks just sounds like need for looking further at you. There are other causes that can cause dramatic increase in shortness of breath. > > > > Beth: Hospice is coming out, I have heard such wonderful things > about them. I just cannot believe my increase in O2 over the last few > weeks.. I know my carbond dioxide is high but I need to breath. Thanks > for info. > > Amy > > > > > > > > > > ____________ _________ _________ __ > > From: Beth mbmurtha@ > > To: Breathe-Support@ yahoogroups.. com > > Sent: Sunday, December 28, 2008 8:53:46 AM > > Subject: Re: LPM > > > > > > Amy, > > The most I've heard about that I can think of is around 15 or so for > someone whose still up and around. But that's only what I've heard of > not what's possible. I think this is a very individual process. We each > struggle with our own bodies response to our own version of whatever > interstitial lung disease we have. It's a struggle for me not to compare > myself to others but I continually remind myself not to do that. Just > concentrate on what works for you and do that. > > > > I would encourage you to look into Hospice. Talk to them, ask lots of > questions and remember bringing Hospice into the mix does not mean you > are going to die next week. They can be so incredibly helpful, it's > worth looking into! > > > > Beth in North Carolina > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > People are so worried about what they eat between Christmas and the > New Year, but they really should be worried about what they eat between > the New Year and Christmas. ~Author Unknown > > > > > > > > > > ____________ _________ _________ __ > > From: Amy Dawn amy7675 (AT) yahoo (DOT) com> > > To: breathe > > Sent: Saturday, December 27, 2008 11:16:34 PM > > Subject: LPM > > > > > > Hi: \Everyone: I was just wondering the highest lpm anyone is or has > been on? At this time I have had to increase to 10 -15 lpm just to stay > in mid 90s. I have began looking into Hospice. > > Amy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Amy There's something more going on and I'd urge you to get to a pulmonologist quickly. While we take sudden downturns, going from 4-6 to 10-15 in three weeks just sounds like need for looking further at you. There are other causes that can cause dramatic increase in shortness of breath. > > > > Beth: Hospice is coming out, I have heard such wonderful things > about them. I just cannot believe my increase in O2 over the last few > weeks.. I know my carbond dioxide is high but I need to breath. Thanks > for info. > > Amy > > > > > > > > > > ____________ _________ _________ __ > > From: Beth mbmurtha@ > > To: Breathe-Support@ yahoogroups.. com > > Sent: Sunday, December 28, 2008 8:53:46 AM > > Subject: Re: LPM > > > > > > Amy, > > The most I've heard about that I can think of is around 15 or so for > someone whose still up and around. But that's only what I've heard of > not what's possible. I think this is a very individual process. We each > struggle with our own bodies response to our own version of whatever > interstitial lung disease we have. It's a struggle for me not to compare > myself to others but I continually remind myself not to do that. Just > concentrate on what works for you and do that. > > > > I would encourage you to look into Hospice. Talk to them, ask lots of > questions and remember bringing Hospice into the mix does not mean you > are going to die next week. They can be so incredibly helpful, it's > worth looking into! > > > > Beth in North Carolina > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > People are so worried about what they eat between Christmas and the > New Year, but they really should be worried about what they eat between > the New Year and Christmas. ~Author Unknown > > > > > > > > > > ____________ _________ _________ __ > > From: Amy Dawn amy7675 (AT) yahoo (DOT) com> > > To: breathe > > Sent: Saturday, December 27, 2008 11:16:34 PM > > Subject: LPM > > > > > > Hi: \Everyone: I was just wondering the highest lpm anyone is or has > been on? At this time I have had to increase to 10 -15 lpm just to stay > in mid 90s. I have began looking into Hospice. > > Amy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Hi Beth: Okay here is the crazy part: my pul says I have ph he said everyone eventually gets it and can tell by the progression although I had an echo and my ejection factor I was told was great I want to say 65. Now my primary says I have cong. heart failure because of edema but the few days in the hospital they did a bnf to show if I have it and going by that I do not. So who knows. Any insight? To: Breathe-Support Sent: Sunday, December 28, 2008 1:54:28 PMSubject: Re: Re: LPM Amy, The other thing that occurs to me is to ask if you have been checked recently for pulmonary hypertension. This is a very common complication of pulmonary fibrosis and can sometimes go undiagnosed for a long time because the symptoms mimic those caused by a progression of our lung disease. If you haven't had one recently you might want to ask your doctor about an echocardiogram to assess the pressure in your pulmonary artery. Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 People are so worried about what they eat between Christmas and the New Year, but they really should be worried about what they eat between the New Year and Christmas. ~Author Unknown From: Amy Dawn <amy7675 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, December 28, 2008 1:49:12 PMSubject: Re: Re: LPM Hi Bruce: No copd just idiopathic pulmonary fibrosis. I was doing fine with 4-6 lpm about 3 weeks ago then the sodium leval dropping from so mush lasix and have not been the same since. Hospice has come out and I think it was a good choice. It is just so hard to breath. I do not think a lot of health prof. get confussed over restrictive (we have discussed this) I was being told too much o2 etc you can go as low as 88 etc well if I breath better at 95 I think you know what I am saying. I am just so worn out. Amy From: Bruce Moreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, December 28, 2008 12:18:09 PMSubject: Re: LPM AmyYou scared me a bit with the "I know my carbon dioxide is high". Do youhave COPD or Asthma as well? Have you talked to the doctor about theincrease in needs. While we say that typically you don't run much riskof over-oxygenation with an ILD, you do with an obstructive disease orobstruction of another form. There is a huge difference between 10 lpmand 15 lpm so thats a pretty wide range. Now I did have one friend whowas on 10 lpm sitting and 15 lpm moving about and still was getting outand around occasionally so it does vary widely. Changes can comesuddenly because of deterioration due to the disease but they can forother reasons as well. If you haven't seen your pulmonologist veryrecently, please do so.Now, as to the other part, I'm a strong believer in hospice and that isthe way I intend to spend my last time whether it's a month or years. Ihave already talked some, just to learn. I would certainly advise that.Also, talk to more than one and compare your comfort with them.>> Beth: Hospice is coming out, I have heard such wonderful thingsabout them. I just cannot believe my increase in O2 over the last fewweeks.. I know my carbond dioxide is high but I need to breath. Thanksfor info.> Amy>>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Sunday, December 28, 2008 8:53:46 AM> Subject: Re: LPM>>> Amy,> The most I've heard about that I can think of is around 15 or so forsomeone whose still up and around. But that's only what I've heard ofnot what's possible. I think this is a very individual process. We eachstruggle with our own bodies response to our own version of whateverinterstitial lung disease we have. It's a struggle for me not to comparemyself to others but I continually remind myself not to do that. Justconcentrate on what works for you and do that.>> I would encourage you to look into Hospice. Talk to them, ask lots ofquestions and remember bringing Hospice into the mix does not mean youare going to die next week. They can be so incredibly helpful, it'sworth looking into!>> Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>> People are so worried about what they eat between Christmas and theNew Year, but they really should be worried about what they eat betweenthe New Year and Christmas. ~Author Unknown>>>>> ____________ _________ _________ __> From: Amy Dawn amy7675 (AT) yahoo (DOT) com>> To: breathe <Breathe-support@ yahoogroups. com>> Sent: Saturday, December 27, 2008 11:16:34 PM> Subject: LPM>>> Hi: \Everyone: I was just wondering the highest lpm anyone is or hasbeen on? At this time I have had to increase to 10 -15 lpm just to stayin mid 90s. I have began looking into Hospice.> Amy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Also Bruce I did not mention this in my reply. I am so tired of fighting, it has been almost 10 years and I could go to one dr then what next week another issue. I think Hospice will really benefit me, I hope I do not sound too cynical I just have come to that point. Thanks for caring. Amy To: Breathe-Support Sent: Sunday, December 28, 2008 1:58:21 PMSubject: Re: LPM AmyThere's something more going on and I'd urge you to get to apulmonologist quickly. While we take sudden downturns, going from 4-6 to10-15 in three weeks just sounds like need for looking further at you.There are other causes that can cause dramatic increase in shortness ofbreath.> >> > Beth: Hospice is coming out, I have heard such wonderful things> about them. I just cannot believe my increase in O2 over the last few> weeks.. I know my carbond dioxide is high but I need to breath. Thanks> for info.> > Amy> >> >> >> >> > ____________ _________ _________ __> > From: Beth mbmurtha@> > To: Breathe-Support@ yahoogroups. . com> > Sent: Sunday, December 28, 2008 8:53:46 AM> > Subject: Re: LPM> >> >> > Amy,> > The most I've heard about that I can think of is around 15 or so for> someone whose still up and around. But that's only what I've heard of> not what's possible. I think this is a very individual process. Weeach> struggle with our own bodies response to our own version of whatever> interstitial lung disease we have. It's a struggle for me not tocompare> myself to others but I continually remind myself not to do that. Just> concentrate on what works for you and do that.> >> > I would encourage you to look into Hospice. Talk to them, ask lotsof> questions and remember bringing Hospice into the mix does not mean you> are going to die next week. They can be so incredibly helpful, it's> worth looking into!> >> > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> > People are so worried about what they eat between Christmas and the> New Year, but they really should be worried about what they eatbetween> the New Year and Christmas. ~Author Unknown> >> >> >> >> > ____________ _________ _________ __> > From: Amy Dawn amy7675 (AT) yahoo (DOT) com>> > To: breathe <Breathe-support@ yahoogroups. . com>> > Sent: Saturday, December 27, 2008 11:16:34 PM> > Subject: LPM> >> >> > Hi: \Everyone: I was just wondering the highest lpm anyone is or has> been on? At this time I have had to increase to 10 -15 lpm just tostay> in mid 90s. I have began looking into Hospice.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Amy ... I'm sitting at my computer when this post from you came on. Ahhhh darlin' I think (from talking to others who progress to where you are) we really do reach a place where we don't give up we just give out. It is damn hard work keeping ourselves going. I don't do all I should do, I simply do not have the energy. The way it is is the way it is! I don't read cynical from you but honesty. Sounds like you are moving into a different phase now and you still will have to ~cope~ with this new phase. More hugs to you Amy. Hang in there. Love, MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! LPM> >> >> > Hi: \Everyone: I was just wondering the highest lpm anyone is or has> been on? At this time I have had to increase to 10 -15 lpm just tostay> in mid 90s. I have began looking into Hospice.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Amy ... I'm sitting at my computer when this post from you came on. Ahhhh darlin' I think (from talking to others who progress to where you are) we really do reach a place where we don't give up we just give out. It is damn hard work keeping ourselves going. I don't do all I should do, I simply do not have the energy. The way it is is the way it is! I don't read cynical from you but honesty. Sounds like you are moving into a different phase now and you still will have to ~cope~ with this new phase. More hugs to you Amy. Hang in there. Love, MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! LPM> >> >> > Hi: \Everyone: I was just wondering the highest lpm anyone is or has> been on? At this time I have had to increase to 10 -15 lpm just tostay> in mid 90s. I have began looking into Hospice.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Amy The reason Beth and I are responding as we are is that there are medications for PH. Saying things like " everyone eventually gets it " is not an acceptable diagnosis. You've had a huge change in three weeks and PH or something else could well be the cause. As to giving up, thats a personal choice and there is a time and place for most of us. I'd just ask this. If you could be back where you were three weeks ago or close to it, would you feel differently? Back at 6-8 lpm even versus the 10-15? See, I think your current condition is reason for being quite tired of it all. I'm just concerned about the degree of change that may not be from your primary illness. If you don't want to have a cathertization to determine definitely PH then I sort of think what would Revatio or Tracleer hurt right now anyway and they might just relieve some of the suffering. Now insurance might well require the cathertization which is the only sure way of diagnosing but its not as bad as it sounds. > > > > Beth: Hospice is coming out, I have heard such wonderful things > about them. I just cannot believe my increase in O2 over the last few > weeks.. I know my carbond dioxide is high but I need to breath. Thanks > for info. > > Amy > > > > > > > > > > ____________ _________ _________ __ > > From: Beth mbmurtha@ > > To: Breathe-Support@ yahoogroups. com > > Sent: Sunday, December 28, 2008 8:53:46 AM > > Subject: Re: LPM > > > > > > Amy, > > The most I've heard about that I can think of is around 15 or so for > someone whose still up and around. But that's only what I've heard of > not what's possible. I think this is a very individual process. We each > struggle with our own bodies response to our own version of whatever > interstitial lung disease we have.. It's a struggle for me not to compare > myself to others but I continually remind myself not to do that. Just > concentrate on what works for you and do that. > > > > I would encourage you to look into Hospice. Talk to them, ask lots of > questions and remember bringing Hospice into the mix does not mean you > are going to die next week. They can be so incredibly helpful, it's > worth looking into! > > > > Beth in North Carolina > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > People are so worried about what they eat between Christmas and the > New Year, but they really should be worried about what they eat between > the New Year and Christmas. ~Author Unknown > > > > > > > > > > ____________ _________ _________ __ > > From: Amy Dawn amy7675 (AT) yahoo (DOT) com> > > To: breathe > > Sent: Saturday, December 27, 2008 11:16:34 PM > > Subject: LPM > > > > > > Hi: \Everyone: I was just wondering the highest lpm anyone is or has > been on? At this time I have had to increase to 10 -15 lpm just to stay > in mid 90s. I have began looking into Hospice. > > Amy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Amy The reason Beth and I are responding as we are is that there are medications for PH. Saying things like " everyone eventually gets it " is not an acceptable diagnosis. You've had a huge change in three weeks and PH or something else could well be the cause. As to giving up, thats a personal choice and there is a time and place for most of us. I'd just ask this. If you could be back where you were three weeks ago or close to it, would you feel differently? Back at 6-8 lpm even versus the 10-15? See, I think your current condition is reason for being quite tired of it all. I'm just concerned about the degree of change that may not be from your primary illness. If you don't want to have a cathertization to determine definitely PH then I sort of think what would Revatio or Tracleer hurt right now anyway and they might just relieve some of the suffering. Now insurance might well require the cathertization which is the only sure way of diagnosing but its not as bad as it sounds. > > > > Beth: Hospice is coming out, I have heard such wonderful things > about them. I just cannot believe my increase in O2 over the last few > weeks.. I know my carbond dioxide is high but I need to breath. Thanks > for info. > > Amy > > > > > > > > > > ____________ _________ _________ __ > > From: Beth mbmurtha@ > > To: Breathe-Support@ yahoogroups. com > > Sent: Sunday, December 28, 2008 8:53:46 AM > > Subject: Re: LPM > > > > > > Amy, > > The most I've heard about that I can think of is around 15 or so for > someone whose still up and around. But that's only what I've heard of > not what's possible. I think this is a very individual process. We each > struggle with our own bodies response to our own version of whatever > interstitial lung disease we have.. It's a struggle for me not to compare > myself to others but I continually remind myself not to do that. Just > concentrate on what works for you and do that. > > > > I would encourage you to look into Hospice. Talk to them, ask lots of > questions and remember bringing Hospice into the mix does not mean you > are going to die next week. They can be so incredibly helpful, it's > worth looking into! > > > > Beth in North Carolina > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > People are so worried about what they eat between Christmas and the > New Year, but they really should be worried about what they eat between > the New Year and Christmas. ~Author Unknown > > > > > > > > > > ____________ _________ _________ __ > > From: Amy Dawn amy7675 (AT) yahoo (DOT) com> > > To: breathe > > Sent: Saturday, December 27, 2008 11:16:34 PM > > Subject: LPM > > > > > > Hi: \Everyone: I was just wondering the highest lpm anyone is or has > been on? At this time I have had to increase to 10 -15 lpm just to stay > in mid 90s. I have began looking into Hospice. > > Amy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Amy The reason Beth and I are responding as we are is that there are medications for PH. Saying things like " everyone eventually gets it " is not an acceptable diagnosis. You've had a huge change in three weeks and PH or something else could well be the cause. As to giving up, thats a personal choice and there is a time and place for most of us. I'd just ask this. If you could be back where you were three weeks ago or close to it, would you feel differently? Back at 6-8 lpm even versus the 10-15? See, I think your current condition is reason for being quite tired of it all. I'm just concerned about the degree of change that may not be from your primary illness. If you don't want to have a cathertization to determine definitely PH then I sort of think what would Revatio or Tracleer hurt right now anyway and they might just relieve some of the suffering. Now insurance might well require the cathertization which is the only sure way of diagnosing but its not as bad as it sounds. > > > > Beth: Hospice is coming out, I have heard such wonderful things > about them. I just cannot believe my increase in O2 over the last few > weeks.. I know my carbond dioxide is high but I need to breath. Thanks > for info. > > Amy > > > > > > > > > > ____________ _________ _________ __ > > From: Beth mbmurtha@ > > To: Breathe-Support@ yahoogroups. com > > Sent: Sunday, December 28, 2008 8:53:46 AM > > Subject: Re: LPM > > > > > > Amy, > > The most I've heard about that I can think of is around 15 or so for > someone whose still up and around. But that's only what I've heard of > not what's possible. I think this is a very individual process. We each > struggle with our own bodies response to our own version of whatever > interstitial lung disease we have.. It's a struggle for me not to compare > myself to others but I continually remind myself not to do that. Just > concentrate on what works for you and do that. > > > > I would encourage you to look into Hospice. Talk to them, ask lots of > questions and remember bringing Hospice into the mix does not mean you > are going to die next week. They can be so incredibly helpful, it's > worth looking into! > > > > Beth in North Carolina > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > People are so worried about what they eat between Christmas and the > New Year, but they really should be worried about what they eat between > the New Year and Christmas. ~Author Unknown > > > > > > > > > > ____________ _________ _________ __ > > From: Amy Dawn amy7675 (AT) yahoo (DOT) com> > > To: breathe > > Sent: Saturday, December 27, 2008 11:16:34 PM > > Subject: LPM > > > > > > Hi: \Everyone: I was just wondering the highest lpm anyone is or has > been on? At this time I have had to increase to 10 -15 lpm just to stay > in mid 90s. I have began looking into Hospice. > > Amy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Thank you Sher. I just posted a question about morphine maybe it was you that was talking about it in the past anyway if you know anything about it let me know. Thank you, Amy To: Breathe-Support Sent: Sunday, December 28, 2008 2:31:34 PMSubject: Re: Re: LPM Amy ... I'm sitting at my computer when this post from you came on. Ahhhh darlin' I think (from talking to others who progress to where you are) we really do reach a place where we don't give up we just give out. It is damn hard work keeping ourselves going. I don't do all I should do, I simply do not have the energy. The way it is is the way it is! I don't read cynical from you but honesty. Sounds like you are moving into a different phase now and you still will have to ~cope~ with this new phase. More hugs to you Amy. Hang in there. Love, MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! LPM> >> >> > Hi: \Everyone: I was just wondering the highest lpm anyone is or has> been on? At this time I have had to increase to 10 -15 lpm just tostay> in mid 90s. I have began looking into Hospice.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Thank you Sher. I just posted a question about morphine maybe it was you that was talking about it in the past anyway if you know anything about it let me know. Thank you, Amy To: Breathe-Support Sent: Sunday, December 28, 2008 2:31:34 PMSubject: Re: Re: LPM Amy ... I'm sitting at my computer when this post from you came on. Ahhhh darlin' I think (from talking to others who progress to where you are) we really do reach a place where we don't give up we just give out. It is damn hard work keeping ourselves going. I don't do all I should do, I simply do not have the energy. The way it is is the way it is! I don't read cynical from you but honesty. Sounds like you are moving into a different phase now and you still will have to ~cope~ with this new phase. More hugs to you Amy. Hang in there. Love, MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! LPM> >> >> > Hi: \Everyone: I was just wondering the highest lpm anyone is or has> been on? At this time I have had to increase to 10 -15 lpm just tostay> in mid 90s. I have began looking into Hospice.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Thank you Sher. I just posted a question about morphine maybe it was you that was talking about it in the past anyway if you know anything about it let me know. Thank you, Amy To: Breathe-Support Sent: Sunday, December 28, 2008 2:31:34 PMSubject: Re: Re: LPM Amy ... I'm sitting at my computer when this post from you came on. Ahhhh darlin' I think (from talking to others who progress to where you are) we really do reach a place where we don't give up we just give out. It is damn hard work keeping ourselves going. I don't do all I should do, I simply do not have the energy. The way it is is the way it is! I don't read cynical from you but honesty. Sounds like you are moving into a different phase now and you still will have to ~cope~ with this new phase. More hugs to you Amy. Hang in there. Love, MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! LPM> >> >> > Hi: \Everyone: I was just wondering the highest lpm anyone is or has> been on? At this time I have had to increase to 10 -15 lpm just tostay> in mid 90s. I have began looking into Hospice.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Amy... I think morphine is great...my problem is I am allergic to it! It worked the best for me until I could not tolerate the side effects another moment. Hives on my back from waist to shoulders. I go to a pain clinic and they tell me morphine is the best for those w/compromised lungs. At first I didn't want to take it...MORPHINE?! Boy, that's huge. But I was reassured and tried it. It's a lateral move from other opiates and I thought it would be more dangerous for me. Good luck. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! LPM> >> >> > Hi: \Everyone: I was just wondering the highest lpm anyone is or has> been on? At this time I have had to increase to 10 -15 lpm just tostay> in mid 90s. I have began looking into Hospice.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 I wonder if there is a generic list of questions for the initial Hospice interview. Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: LPMTo: Breathe-Support Date: Sunday, December 28, 2008, 8:53 AM Amy, The most I've heard about that I can think of is around 15 or so for someone whose still up and around. But that's only what I've heard of not what's possible. I think this is a very individual process. We each struggle with our own bodies response to our own version of whatever interstitial lung disease we have. It's a struggle for me not to compare myself to others but I continually remind myself not to do that. Just concentrate on what works for you and do that. I would encourage you to look into Hospice. Talk to them, ask lots of questions and remember bringing Hospice into the mix does not mean you are going to die next week. They can be so incredibly helpful, it's worth looking into! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 People are so worried about what they eat between Christmas and the New Year, but they really should be worried about what they eat between the New Year and Christmas. ~Author Unknown From: Amy Dawn <amy7675 (AT) yahoo (DOT) com>To: breathe <Breathe-support@ yahoogroups. com>Sent: Saturday, December 27, 2008 11:16:34 PMSubject: LPM Hi: \Everyone: I was just wondering the highest lpm anyone is or has been on? At this time I have had to increase to 10 -15 lpm just to stay in mid 90s. I have began looking into Hospice. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 I wonder if there is a generic list of questions for the initial Hospice interview. Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: LPMTo: Breathe-Support Date: Sunday, December 28, 2008, 8:53 AM Amy, The most I've heard about that I can think of is around 15 or so for someone whose still up and around. But that's only what I've heard of not what's possible. I think this is a very individual process. We each struggle with our own bodies response to our own version of whatever interstitial lung disease we have. It's a struggle for me not to compare myself to others but I continually remind myself not to do that. Just concentrate on what works for you and do that. I would encourage you to look into Hospice. Talk to them, ask lots of questions and remember bringing Hospice into the mix does not mean you are going to die next week. They can be so incredibly helpful, it's worth looking into! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 People are so worried about what they eat between Christmas and the New Year, but they really should be worried about what they eat between the New Year and Christmas. ~Author Unknown From: Amy Dawn <amy7675 (AT) yahoo (DOT) com>To: breathe <Breathe-support@ yahoogroups. com>Sent: Saturday, December 27, 2008 11:16:34 PMSubject: LPM Hi: \Everyone: I was just wondering the highest lpm anyone is or has been on? At this time I have had to increase to 10 -15 lpm just to stay in mid 90s. I have began looking into Hospice. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 I wonder if there is a generic list of questions for the initial Hospice interview. Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: LPMTo: Breathe-Support Date: Sunday, December 28, 2008, 8:53 AM Amy, The most I've heard about that I can think of is around 15 or so for someone whose still up and around. But that's only what I've heard of not what's possible. I think this is a very individual process. We each struggle with our own bodies response to our own version of whatever interstitial lung disease we have. It's a struggle for me not to compare myself to others but I continually remind myself not to do that. Just concentrate on what works for you and do that. I would encourage you to look into Hospice. Talk to them, ask lots of questions and remember bringing Hospice into the mix does not mean you are going to die next week. They can be so incredibly helpful, it's worth looking into! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 People are so worried about what they eat between Christmas and the New Year, but they really should be worried about what they eat between the New Year and Christmas. ~Author Unknown From: Amy Dawn <amy7675 (AT) yahoo (DOT) com>To: breathe <Breathe-support@ yahoogroups. com>Sent: Saturday, December 27, 2008 11:16:34 PMSubject: LPM Hi: \Everyone: I was just wondering the highest lpm anyone is or has been on? At this time I have had to increase to 10 -15 lpm just to stay in mid 90s. I have began looking into Hospice. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 PinkJ... I'm thinking each person would have such individual needs....Who, What, Where, When and Why are pretty standard huh. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! LPM Hi: \Everyone: I was just wondering the highest lpm anyone is or has been on? At this time I have had to increase to 10 -15 lpm just to stay in mid 90s. I have began looking into Hospice. Amy Quote Link to comment Share on other sites More sharing options...
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