Guest guest Posted May 9, 2008 Report Share Posted May 9, 2008 Just came from the Cardiologist...he says my Echo is normal and so is the Holter (24 hr heart) Monitor! So of course that is very good news. NO sign of PH! More good news! Blood panel all normal! So we rule out any heart problems. He says any "problems" I'm having are lung related..... I continue to be confused about use of O2. Pulmonologist says I do not need O2 if sats are up.....the sob is enough to render me useless however. I'm sitting here now with O2 because of sob at climbing stairs and being out. I feel like I'm caught with my hand in the cookie jar. Sats are low 90s. So I'll take off the O2 for now. I'm more than a little impatient with, "don't need O2".......'can't breathe'..... "sats are up, don't need O2"....'can't breathe'. I use o2 when I can't breathe, regardless of sats. If it works don't fix it. I'm going back to work on my secret-mission................. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2008 Report Share Posted May 9, 2008 Sher There are other reasons for sob.....perhaps the time you weren't on and weren't moving around much helps contribute to some and as you get around more I'm sure it will improve. Now, low 90's is borderline and doesn't leave much room for error. If you're at 90 or 91 with one level of oxygen and a little more just puts you at 94 or so, that often makes sense. Just don't overdo things. > > Just came from the Cardiologist...he says my Echo is normal and so is the Holter (24 hr heart) Monitor! So of course that is very good news. NO sign of PH! More good news! Blood panel all normal! So we rule out any heart problems. He says any " problems " I'm having are lung related..... > I continue to be confused about use of O2. > Pulmonologist says I do not need O2 if sats are up.....the sob is enough to render me useless however. I'm sitting here now with O2 because of sob at climbing stairs and being out. I feel like I'm caught with my hand in the cookie jar. Sats are low 90s. So I'll take off the O2 for now. > I'm more than a little impatient with, > " don't need O2 " .......'can't breathe'..... > " sats are up, don't need O2 " ....'can't breathe'. I use o2 when I can't breathe, regardless of sats. If it works don't fix it. > I'm going back to work on my secret-mission................. > > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. > Don't fret about tomorrow, God is already there! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2008 Report Share Posted May 9, 2008 Sher...... How are you? Really? I agree. Don is short of breath a lot, but his sats are up. When we went to rehab the director said that the oxymeter tells us what is going on in the blood, not what is going on in the lungs. That makes sense! So it makes sense that when you are short of breath the O2 is very necessary. K IllinoisSher Bauman wrote: Just came from the Cardiologist...he says my Echo is normal and so is the Holter (24 hr heart) Monitor! So of course that is very good news. NO sign of PH! More good news! Blood panel all normal! So we rule out any heart problems. He says any "problems" I'm having are lung related..... I continue to be confused about use of O2. Pulmonologist says I do not need O2 if sats are up.....the sob is enough to render me useless however. I'm sitting here now with O2 because of sob at climbing stairs and being out. I feel like I'm caught with my hand in the cookie jar. Sats are low 90s. So I'll take off the O2 for now. I'm more than a little impatient with, "don't need O2".......'can't breathe'..... "sats are up, don't need O2"....'can't breathe'. I use o2 when I can't breathe, regardless of sats. If it works don't fix it. I'm going back to work on my secret-mission................. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2008 Report Share Posted May 10, 2008 Bruce...generally, my sats are mid to upper 90s. When I get into the low 90s I use some O2 if I'm sob. I use 2L O2. I'm still hovering and reading about the liquid. I'll have to also be considering my own needs as we travel to WA next month for our PNW gathering. Lincare will take to the Motel what I need so I'm not concerned. It's such a short drive and I don't usually use O2 in the car unless I've been walking a bunch. You sound like you are ready for your trip. and the planning you have done will make a sweet trip I'm sure! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Sher's Cardio SherThere are other reasons for sob.....perhaps the time you weren't on andweren't moving around much helps contribute to some and as you getaround more I'm sure it will improve.Now, low 90's is borderline and doesn't leave much room for error. Ifyou're at 90 or 91 with one level of oxygen and a little more just putsyou at 94 or so, that often makes sense. Just don't overdo things.>> Just came from the Cardiologist...he says my Echo is normal and so isthe Holter (24 hr heart) Monitor! So of course that is very good news.NO sign of PH! More good news! Blood panel all normal! So we rule outany heart problems. He says any "problems" I'm having are lungrelated.....> I continue to be confused about use of O2.> Pulmonologist says I do not need O2 if sats are up.....the sob isenough to render me useless however. I'm sitting here now with O2because of sob at climbing stairs and being out. I feel like I'm caughtwith my hand in the cookie jar. Sats are low 90s. So I'll take off theO2 for now.> I'm more than a little impatient with,> "don't need O2".......'can't breathe'.....> "sats are up, don't need O2"....'can't breathe'. I use o2 when I can'tbreathe, regardless of sats. If it works don't fix it.> I'm going back to work on my secret-mission.................>> Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2008 Report Share Posted May 10, 2008 K...Yes, the oximeter measures the O2 in the blood. However, according to my pulmonologist, if sats are mid to upper 90s one doesn't need O2. There is enough O2 in the blood stream......................she says, "You're sob because you have a lung disease not an O2 deprivation". OK. That is logical too. So when I'm nearly useless because of sob WHAT DO I NEED???? When I'm really sob, I use O2 for a little while. It can't hurt me, I'm on 2L and it does help. I can sure relate to Don being sob and sats ok. Tell him I say hello and to join us again! He just might like us! I'm feeling......ok. The sob is my biggest problem and the extreme, never ending chronic fatigue. But that goes with other chronic health problems I have too, so, one day at a time. You'll do OK in Chicago. Nice and easy. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Sher's Cardio Sher...... How are you? Really? I agree. Don is short of breath a lot, but his sats are up. When we went to rehab the director said that the oxymeter tells us what is going on in the blood, not what is going on in the lungs. That makes sense! So it makes sense that when you are short of breath the O2 is very necessary. K IllinoisSher Bauman <bofuswbcable (DOT) net> wrote: Just came from the Cardiologist...he says my Echo is normal and so is the Holter (24 hr heart) Monitor! So of course that is very good news. NO sign of PH! More good news! Blood panel all normal! So we rule out any heart problems. He says any "problems" I'm having are lung related..... I continue to be confused about use of O2. Pulmonologist says I do not need O2 if sats are up.....the sob is enough to render me useless however. I'm sitting here now with O2 because of sob at climbing stairs and being out. I feel like I'm caught with my hand in the cookie jar. Sats are low 90s. So I'll take off the O2 for now. I'm more than a little impatient with, "don't need O2".......'can't breathe'..... "sats are up, don't need O2"....'can't breathe'. I use o2 when I can't breathe, regardless of sats. If it works don't fix it. I'm going back to work on my secret-mission................. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2008 Report Share Posted May 10, 2008 I agree Sher, one pulmo says one thing and another says another. How in the heck are we suppose to know? Sure would make sense if they all were on the same page. It seems that when he is sob, the O2 helps him so he does it. He gets panicky when he is too short of breath and that makes it worse. K IllSher Bauman wrote: K...Yes, the oximeter measures the O2 in the blood. However, according to my pulmonologist, if sats are mid to upper 90s one doesn't need O2. There is enough O2 in the blood stream......................she says, "You're sob because you have a lung disease not an O2 deprivation". OK. That is logical too. So when I'm nearly useless because of sob WHAT DO I NEED???? When I'm really sob, I use O2 for a little while. It can't hurt me, I'm on 2L and it does help. I can sure relate to Don being sob and sats ok. Tell him I say hello and to join us again! He just might like us! I'm feeling......ok. The sob is my biggest problem and the extreme, never ending chronic fatigue. But that goes with other chronic health problems I have too, so, one day at a time. You'll do OK in Chicago. Nice and easy. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Sher's Cardio Sher...... How are you? Really? I agree. Don is short of breath a lot, but his sats are up. When we went to rehab the director said that the oxymeter tells us what is going on in the blood, not what is going on in the lungs. That makes sense! So it makes sense that when you are short of breath the O2 is very necessary. K IllinoisSher Bauman <bofuswbcable (DOT) net> wrote: Just came from the Cardiologist...he says my Echo is normal and so is the Holter (24 hr heart) Monitor! So of course that is very good news. NO sign of PH! More good news! Blood panel all normal! So we rule out any heart problems. He says any "problems" I'm having are lung related..... I continue to be confused about use of O2. Pulmonologist says I do not need O2 if sats are up.....the sob is enough to render me useless however. I'm sitting here now with O2 because of sob at climbing stairs and being out. I feel like I'm caught with my hand in the cookie jar. Sats are low 90s. So I'll take off the O2 for now. I'm more than a little impatient with, "don't need O2".......'can't breathe'..... "sats are up, don't need O2"....'can't breathe'. I use o2 when I can't breathe, regardless of sats. If it works don't fix it. I'm going back to work on my secret-mission................. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2008 Report Share Posted May 10, 2008 Sher/ Reality is they make their most educated guesses, but can't really know. Who knows if the cutoff should be 88%, 89%, 90%, 91%, or 92%? They haven't run clinical trials comparing large groups of people at different levels. I've heard all those numbers used. The upper number was used as safety because of the potential inaccuracy of any oximeter. Are you better off at 94% than 92%? No one really knows. It's " conventional wisdom " that has said 90% is the cutoff but don't we all know how many times in life " conventional wisdom " turns out to be wrong. It definitely seems logical that once you are at the levels of a normal healthy person you shouldn't go higher. And, we know there is a number somewhere around 90% that you shouldn't go lower. I talked at length to my pulmonologist this week about many things and one thing he expressed was the fact that he and other pulmonologists are very frustrated by this disease because they are so trained and practicing to give answers, to give treatments, and yet they don't have them. He agreed there are no absolutes when it comes to this disease. Sometimes and in some forms they think Imuran and Prednisone may possibly sometimes help some....like all those qualifiers? Isn't it interesting when you think that there are no completed clinical trials of treating pulmonary fibrosis with Prednisone? Just now there are some trials underway or being recruited on prednisone with other medications, primarily with Imuran. But these are new. As an aside, there are also now trials being run on NAC as its never been tested and proved or disproved. We just have to listen and then make what we think are our best decisions. Right now, I know I face one on medications. Let's see....in 2004 my neurologist felt I might have an autoimmune disease so sent me to a rheumatologist who found no evidence. Since then many many tests and some irregularities but everyone said no autoimmune. Now, the University of Chicago says I have an undifferentiated connective tissue disease and sites no direct evidence but many different blood tests and other factors and findings. So, next, I'm headed to another rheumatologist and then back to my pulmonologist. Then with all the information, I have to make the decision to (1) change nothing and take no medication for it and PF, (2) to try Imuran only and see what happens, or (3) to try Imuran with a small to medium dose of Prednisone (and then what dose is that even). Now, you'd think I'd be rushing to the rheumatologist. Nope, rushing to go on my trip as I wouldn't try anything until after it anyway. The choice on my trip is easy as I know I want to go and where. The choice of what to do med wise requires more opinion and thought and then ultimately a feeling inside as to the answer. > Just came from the Cardiologist...he says my Echo is normal and so is the Holter (24 hr heart) Monitor! So of course that is very good news. NO sign of PH! More good news! Blood panel all normal! So we rule out any heart problems. He says any " problems " I'm having are lung related..... > I continue to be confused about use of O2. > Pulmonologist says I do not need O2 if sats are up.....the sob is enough to render me useless however. I'm sitting here now with O2 because of sob at climbing stairs and being out. I feel like I'm caught with my hand in the cookie jar. Sats are low 90s. So I'll take off the O2 for now. > I'm more than a little impatient with, > " don't need O2 " .......'can't breathe'..... > " sats are up, don't need O2 " ....'can't breathe'. I use o2 when I can't breathe, regardless of sats. If it works don't fix it. > I'm going back to work on my secret-mission................. > > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. > Don't fret about tomorrow, God is already there! > > > > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2008 Report Share Posted May 10, 2008 Bruce....the last line of your post here I quickly wrapped myself around! I do so believe that our 'gut' never lies to us. Our head will....but not our gut. If I will be still and 'listen' I get answers.....sounds like you do too. Another similarity. "Lord, I'm making so much noise I can't hear a word You're saying." A little prayer I like. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Sher's Cardio Sher/Reality is they make their most educated guesses, but can't really know.Who knows if the cutoff should be 88%, 89%, 90%, 91%, or 92%? Theyhaven't run clinical trials comparing large groups of people atdifferent levels. I've heard all those numbers used. The upper numberwas used as safety because of the potential inaccuracy of any oximeter.Are you better off at 94% than 92%? No one really knows. It's"conventional wisdom" that has said 90% is the cutoff but don't we allknow how many times in life "conventional wisdom" turns out to be wrong.It definitely seems logical that once you are at the levels of a normalhealthy person you shouldn't go higher. And, we know there is a numbersomewhere around 90% that you shouldn't go lower.I talked at length to my pulmonologist this week about many things andone thing he expressed was the fact that he and other pulmonologists arevery frustrated by this disease because they are so trained andpracticing to give answers, to give treatments, and yet they don't havethem. He agreed there are no absolutes when it comes to this disease.Sometimes and in some forms they think Imuran and Prednisone maypossibly sometimes help some....like all those qualifiers? Isn't itinteresting when you think that there are no completed clinical trialsof treating pulmonary fibrosis with Prednisone? Just now there are sometrials underway or being recruited on prednisone with other medications,primarily with Imuran. But these are new. As an aside, there are alsonow trials being run on NAC as its never been tested and proved ordisproved.We just have to listen and then make what we think are our bestdecisions. Right now, I know I face one on medications. Let's see....in2004 my neurologist felt I might have an autoimmune disease so sent meto a rheumatologist who found no evidence. Since then many many testsand some irregularities but everyone said no autoimmune. Now, theUniversity of Chicago says I have an undifferentiated connective tissuedisease and sites no direct evidence but many different blood tests andother factors and findings. So, next, I'm headed to anotherrheumatologist and then back to my pulmonologist. Then with all theinformation, I have to make the decision to (1) change nothing and takeno medication for it and PF, (2) to try Imuran only and see whathappens, or (3) to try Imuran with a small to medium dose of Prednisone(and then what dose is that even). Now, you'd think I'd be rushing tothe rheumatologist. Nope, rushing to go on my trip as I wouldn't tryanything until after it anyway. The choice on my trip is easy as I knowI want to go and where. The choice of what to do med wise requires moreopinion and thought and then ultimately a feeling inside as to theanswer.> Just came from the Cardiologist...he says my Echo is normal and so isthe Holter (24 hr heart) Monitor! So of course that is very good news.NO sign of PH! More good news! Blood panel all normal! So we rule outany heart problems. He says any "problems" I'm having are lungrelated.....> I continue to be confused about use of O2.> Pulmonologist says I do not need O2 if sats are up.....the sob isenough to render me useless however. I'm sitting here now with O2because of sob at climbing stairs and being out. I feel like I'm caughtwith my hand in the cookie jar. Sats are low 90s. So I'll take off theO2 for now.> I'm more than a little impatient with,> "don't need O2".......'can't breathe'.....> "sats are up, don't need O2"....'can't breathe'. I use o2 when I can'tbreathe, regardless of sats. If it works don't fix it.> I'm going back to work on my secret-mission.................>> Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!>>>>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>> ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>>>>>> ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.> Quote Link to comment Share on other sites More sharing options...
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