Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 Thank you Ken... MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Recently diagnosed Beth,The information you shared is very valuable - THANK YOU! Whatever you find out will be greatly welcomed! I'm a guy and I keep thinking I can fix this. Intellectually I guess I have accepted IPF though my emotions have NOT. I have an exceptionally close family but still I haven't even felt like crying. I asked the Dr. three times in one visit if my chart actually said the words "Pulmonary Fibrosis" and each time he said yes. He was very patient with me. He is my primary care physician who said not to fly right now. Still my heart says they made a mistake. My dear wife is having the same response.Again, thank you, Beth!Ken> >> > Ken, Beth gave you very good advice. I second it, check > with the doctor first and you may need to have oxygen available. I > live at sea level and my daughter is in Reno NV, at around 4500 or > 4900 elevation, depending on who you are talking to. I no doubt had > IPF on my first trip there, but had not been diagnosed yet, and I > was so very tired and when we stopped for lunch on the way > there,around 7000 ft elevation, I nearly staggered and felt dizzy. > I thought it was just because I was stiff from riding so long. I had > no clue at the time. > > The next trip I hand been diagnosed and I was on 02 at 2 lt and I > still felt so tired. > > The next trip I was still on 02 at 2 lt but I had a oximeter that > would give me my oxygen sats, and I found that where at home I didn't > need any oxygen while sitting, I needed at least 1 lt there, and for > walking I needed more than double than I used at home. Using the > right oxygen made such a difference. it was a much more enjoyable > trip. > > My daughter's company moved up there. she said several > people (people without lung problems) had a hard time aclimating to > the elevation. Some even were hospitalized. So it would be a good > idea to check it out. Marcia> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 Thank you Ken... MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Recently diagnosed Beth,The information you shared is very valuable - THANK YOU! Whatever you find out will be greatly welcomed! I'm a guy and I keep thinking I can fix this. Intellectually I guess I have accepted IPF though my emotions have NOT. I have an exceptionally close family but still I haven't even felt like crying. I asked the Dr. three times in one visit if my chart actually said the words "Pulmonary Fibrosis" and each time he said yes. He was very patient with me. He is my primary care physician who said not to fly right now. Still my heart says they made a mistake. My dear wife is having the same response.Again, thank you, Beth!Ken> >> > Ken, Beth gave you very good advice. I second it, check > with the doctor first and you may need to have oxygen available. I > live at sea level and my daughter is in Reno NV, at around 4500 or > 4900 elevation, depending on who you are talking to. I no doubt had > IPF on my first trip there, but had not been diagnosed yet, and I > was so very tired and when we stopped for lunch on the way > there,around 7000 ft elevation, I nearly staggered and felt dizzy. > I thought it was just because I was stiff from riding so long. I had > no clue at the time. > > The next trip I hand been diagnosed and I was on 02 at 2 lt and I > still felt so tired. > > The next trip I was still on 02 at 2 lt but I had a oximeter that > would give me my oxygen sats, and I found that where at home I didn't > need any oxygen while sitting, I needed at least 1 lt there, and for > walking I needed more than double than I used at home. Using the > right oxygen made such a difference. it was a much more enjoyable > trip. > > My daughter's company moved up there. she said several > people (people without lung problems) had a hard time aclimating to > the elevation. Some even were hospitalized. So it would be a good > idea to check it out. Marcia> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 Ken...I forgot to mention, go to http://health.groups.yahoo.com/group/Breathe-Support and check out the photo albums. Another way to get acquainted w/members. Add some of yours too. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Recently diagnosed KenYou are new here and doing what you can to learn about the disease andhow to live with it. I know you feel a bit lost and wonder what to sayand where to turn. We all were there. What is funny is that before longyou'll have totally forgotten being a newbie, a year from now you'llfeel like a board veteran and three years from now you'll feel likeyou've been a member forever.Life here won't be without some sadness as friends suffer and die.However, that will be more than offset in watching friends live andenjoy themselves and thrive in spite of the obstacles. You'll even findyourself doing a double take as you see how the attitudes of so manyseem inconsistent with their physical condition. You'll find those youconnect to best and consider mentors. I've found those ahead of me who Iconsider such marvelous role models. Hopefully gaining knowledge willmake you feel a little more in control of your life.> > >> > > Ken, Beth gave you very good advice. I second it, check> > with the doctor first and you may need to have oxygen available.> I> > live at sea level and my daughter is in Reno NV, at around 4500 or> > 4900 elevation, depending on who you are talking to. I no doubt> had> > IPF on my first trip there, but had not been diagnosed yet, and I> > was so very tired and when we stopped for lunch on the way> > there,around 7000 ft elevation, I nearly staggered and felt> dizzy.> > I thought it was just because I was stiff from riding so long. I> had> > no clue at the time.> > > The next trip I hand been diagnosed and I was on 02 at 2 lt and I> > still felt so tired.> > > The next trip I was still on 02 at 2 lt but I had a oximeter that> > would give me my oxygen sats, and I found that where at home I> didn't> > need any oxygen while sitting, I needed at least 1 lt there, and> for> > walking I needed more than double than I used at home. Using> the> > right oxygen made such a difference. it was a much more enjoyable> > trip.> > > My daughter's company moved up there. she said several> > people (people without lung problems) had a hard time aclimating to> > the elevation. Some even were hospitalized. So it would be a good> > idea to check it out. Marcia> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 I think i told you that I had an upset stomach on Tuesday. Slept all day. last night on the local news, there was a report about 2 kinds of stomach upsets in the metropolitan area -- one viral and one bacterial at any rate there is a school in Cherry Hill NJ, about 30 minutes from here, that is closed today because so many children are sick with one of the stomach flu's at least one of these stomach upsets has been going on since the fall per the newscaster so local ladies and gents -- the 2 I know are Z and Patti F, -- be very, very careful wash your hands, etc, etc, etc Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: Recently diagnosedTo: Breathe-Support Date: Wednesday, February 4, 2009, 10:41 PM KenRun to the doctor. Get antibiotics and if not well after one round, goanother. There are no silver bullets. Infection is dangerous. There isno such thing as a simple cold with PF. Your system is compromised. And,if any doctor makes you feel like "here comes Ken again" the solution tothat is simple-a new doctor.Please take care.> > > >> > > > Ken, Beth gave you very good advice. I second it, check> > > with the doctor first and you may need to have oxygen> available. I> > > live at sea level and my daughter is in Reno NV, at around 4500 or> > > 4900 elevation, depending on who you are talking to. I no doubt> had> > > IPF on my first trip there, but had not been diagnosed yet, and I> > > was so very tired and when we stopped for lunch on the way> > > there,around 7000 ft elevation, I nearly staggered and felt dizzy.> > > I thought it was just because I was stiff from riding so long. I> had> > > no clue at the time.> > > > The next trip I hand been diagnosed and I was on 02 at 2 lt and> I> > > still felt so tired.> > > > The next trip I was still on 02 at 2 lt but I had a oximeter> that> > > would give me my oxygen sats, and I found that where at home I> didn't> > > need any oxygen while sitting, I needed at least 1 lt there, and> for> > > walking I needed more than double than I used at home. Using> the> > > right oxygen made such a difference.. it was a much more enjoyable> > > trip.> > > > My daughter's company moved up there. she said several> > > people (people without lung problems) had a hard time aclimating> to> > > the elevation. Some even were hospitalized. So it would be a> good> > > idea to check it out. Marcia> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 I think i told you that I had an upset stomach on Tuesday. Slept all day. last night on the local news, there was a report about 2 kinds of stomach upsets in the metropolitan area -- one viral and one bacterial at any rate there is a school in Cherry Hill NJ, about 30 minutes from here, that is closed today because so many children are sick with one of the stomach flu's at least one of these stomach upsets has been going on since the fall per the newscaster so local ladies and gents -- the 2 I know are Z and Patti F, -- be very, very careful wash your hands, etc, etc, etc Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: Recently diagnosedTo: Breathe-Support Date: Wednesday, February 4, 2009, 10:41 PM KenRun to the doctor. Get antibiotics and if not well after one round, goanother. There are no silver bullets. Infection is dangerous. There isno such thing as a simple cold with PF. Your system is compromised. And,if any doctor makes you feel like "here comes Ken again" the solution tothat is simple-a new doctor.Please take care.> > > >> > > > Ken, Beth gave you very good advice. I second it, check> > > with the doctor first and you may need to have oxygen> available. I> > > live at sea level and my daughter is in Reno NV, at around 4500 or> > > 4900 elevation, depending on who you are talking to. I no doubt> had> > > IPF on my first trip there, but had not been diagnosed yet, and I> > > was so very tired and when we stopped for lunch on the way> > > there,around 7000 ft elevation, I nearly staggered and felt dizzy.> > > I thought it was just because I was stiff from riding so long. I> had> > > no clue at the time.> > > > The next trip I hand been diagnosed and I was on 02 at 2 lt and> I> > > still felt so tired.> > > > The next trip I was still on 02 at 2 lt but I had a oximeter> that> > > would give me my oxygen sats, and I found that where at home I> didn't> > > need any oxygen while sitting, I needed at least 1 lt there, and> for> > > walking I needed more than double than I used at home. Using> the> > > right oxygen made such a difference.. it was a much more enjoyable> > > trip.> > > > My daughter's company moved up there. she said several> > > people (people without lung problems) had a hard time aclimating> to> > > the elevation. Some even were hospitalized. So it would be a> good> > > idea to check it out. Marcia> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 Hi Pink Down here in NW Georgia, many have been stricken with the stomach flu. has been subbing at the daycare at our church because several teachers came down with it. I certainly do not want to come in contact with that because last February I had the flu and I made lots of trips to the potty--once I didn't make it. The reason it was so scary for me was that I had to turn up my concentrator because 2-3 lpm did not work while I was sick. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > > > > >> > > > > Ken, Beth gave you very good advice. I second it, check> > > > with the doctor first and you may need to have oxygen> > available. I> > > > live at sea level and my daughter is in Reno NV, at around 4500 or> > > > 4900 elevation, depending on who you are talking to. I no doubt> > had> > > > IPF on my first trip there, but had not been diagnosed yet, and I> > > > was so very tired and when we stopped for lunch on the way> > > > there,around 7000 ft elevation, I nearly staggered and felt dizzy.> > > > I thought it was just because I was stiff from riding so long. I> > had> > > > no clue at the time.> > > > > The next trip I hand been diagnosed and I was on 02 at 2 lt and> > I> > > > still felt so tired.> > > > > The next trip I was still on 02 at 2 lt but I had a oximeter> > that> > > > would give me my oxygen sats, and I found that where at home I> > didn't> > > > need any oxygen while sitting, I needed at least 1 lt there, and> > for> > > > walking I needed more than double than I used at home. Using> > the> > > > right oxygen made such a difference.. it was a much more enjoyable> > > > trip.> > > > > My daughter's company moved up there. she said several> > > > people (people without lung problems) had a hard time aclimating> > to> > > > the elevation. Some even were hospitalized. So it would be a> > good> > > > idea to check it out. Marcia> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 Hi Pink Down here in NW Georgia, many have been stricken with the stomach flu. has been subbing at the daycare at our church because several teachers came down with it. I certainly do not want to come in contact with that because last February I had the flu and I made lots of trips to the potty--once I didn't make it. The reason it was so scary for me was that I had to turn up my concentrator because 2-3 lpm did not work while I was sick. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > > > > >> > > > > Ken, Beth gave you very good advice. I second it, check> > > > with the doctor first and you may need to have oxygen> > available. I> > > > live at sea level and my daughter is in Reno NV, at around 4500 or> > > > 4900 elevation, depending on who you are talking to. I no doubt> > had> > > > IPF on my first trip there, but had not been diagnosed yet, and I> > > > was so very tired and when we stopped for lunch on the way> > > > there,around 7000 ft elevation, I nearly staggered and felt dizzy.> > > > I thought it was just because I was stiff from riding so long. I> > had> > > > no clue at the time.> > > > > The next trip I hand been diagnosed and I was on 02 at 2 lt and> > I> > > > still felt so tired.> > > > > The next trip I was still on 02 at 2 lt but I had a oximeter> > that> > > > would give me my oxygen sats, and I found that where at home I> > didn't> > > > need any oxygen while sitting, I needed at least 1 lt there, and> > for> > > > walking I needed more than double than I used at home. Using> > the> > > > right oxygen made such a difference.. it was a much more enjoyable> > > > trip.> > > > > My daughter's company moved up there. she said several> > > > people (people without lung problems) had a hard time aclimating> > to> > > > the elevation. Some even were hospitalized. So it would be a> > good> > > > idea to check it out. Marcia> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 Pink, This "bug" got our entire family including Sara , 's in-laws,, Sam, Mike, Kurt, his brother and s-i-l and their kids and me right after Xmas. We were all sick over New Years Eve..none of us went out! It was quite a couple of days for all of us! Thanks for the further warning! Z fibriotic NSIP/05 Z 65, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Joyce T Rosenberg wrote: I think i told you that I had an upset stomach on Tuesday. Slept all day. last night on the local news, there was a report about 2 kinds of stomach upsets in the metropolitan area -- one viral and one bacterial at any rate there is a school in Cherry Hill NJ, about 30 minutes from here, that is closed today because so many children are sick with one of the stomach flu's at least one of these stomach upsets has been going on since the fall per the newscaster so local ladies and gents -- the 2 I know are Z and Patti F, -- be very, very careful wash your hands, etc, etc, etc Pink Joyce IPF 3/06 Pennsylvania Donate Life From: Bruce Moreland <brucemoreland (AT) gmail (DOT) com> Subject: Re: Recently diagnosed To: Breathe-Support Date: Wednesday, February 4, 2009, 10:41 PM Ken Run to the doctor. Get antibiotics and if not well after one round, go another. There are no silver bullets. Infection is dangerous. There is no such thing as a simple cold with PF. Your system is compromised. And, if any doctor makes you feel like "here comes Ken again" the solution to that is simple-a new doctor. Please take care. > > > > > > > > Ken, Beth gave you very good advice. I second it, check > > > with the doctor first and you may need to have oxygen > available. I > > > live at sea level and my daughter is in Reno NV, at around 4500 or > > > 4900 elevation, depending on who you are talking to. I no doubt > had > > > IPF on my first trip there, but had not been diagnosed yet, and I > > > was so very tired and when we stopped for lunch on the way > > > there,around 7000 ft elevation, I nearly staggered and felt dizzy. > > > I thought it was just because I was stiff from riding so long. I > had > > > no clue at the time. > > > > The next trip I hand been diagnosed and I was on 02 at 2 lt and > I > > > still felt so tired. > > > > The next trip I was still on 02 at 2 lt but I had a oximeter > that > > > would give me my oxygen sats, and I found that where at home I > didn't > > > need any oxygen while sitting, I needed at least 1 lt there, and > for > > > walking I needed more than double than I used at home. Using > the > > > right oxygen made such a difference.. it was a much more enjoyable > > > trip. > > > > My daughter's company moved up there. she said several > > > people (people without lung problems) had a hard time aclimating > to > > > the elevation. Some even were hospitalized. So it would be a > good > > > idea to check it out. Marcia > > > > > > > > > > Internal Virus Database is out of date. Checked by AVG - http://www.avg.com Version: 8.0.233 / Virus Database: 270.10.16/1930 - Release Date: 2/2/2009 7:51 AM Quote Link to comment Share on other sites More sharing options...
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