Re: Re: New Best Friend

July 22, 2009

Hi JoAnn,

I agree with Bruce 100%. My Dr. At Emory said it is very important to use O2 at night and while sleeping. I also found out I had sleep apnea, and I hook up the O2 to my machine. During my sleep study my O2 dropped in the low 80's.

Welcome to the club,

Joe Lamenskle

ï»¿ ï»¿ JOE & JOANIE LAMENSKIE

IPF JAN. 2008

-- Re: New Best Friend

JoannA couple more questions. Do you have an oximeter? If not, please getone.Second, you mention forgetting to put it on in the morning. I can'timagine you need it during the day but not at night. Have you had anovernight oximeter check done? If not, request one immediately.Everyone's sats drop during sleep and so for a PF'er its normal thatthey would need oxygen during sleep. My first test after diagnosis, Iwas dropping below 90% over 25% of the time. Now, this is a person whocould lay in bed at that time awake and be at 98-99% after laying therea while.>> I just started on 02 2 weeks ago. I feel soo much better that I callit my New Best Friend. Right now my Dr. is still trying to find out howmuch 02 I need and they are still adjusting it. I started on 2 lpmw/exertion, now it has been raised to 4 lpm w/exertion. feel so muchbeter now, I have more energy, I'm not so tired anymore. Now when I goto Pulmonary Rehab my sats stay in the 90's.>> I want to thank everyone of you who suggested I call my Dr. myselfinstead of waiting until my PR was over and they sent the report to myDr. I still have 2 weeks of PR yet, this means I got a 4 week jump onthem. THANK YOU.>> I still have the problem that I forget to put my 02 on in he morning. I will get up in the morning an start doing things around the house andrealize that I'm having trouble breathing then I will remember my 02. Sometimes I even go away from the house and forget to take it, then Ihave to go home and get it. Soon, hopefully, I will remember it all thetime. Did anyone else have this problem when they were on 02 w/exertiononly?> Have a nice day everyone. Me and my Best Friend are off for the day.>> Jo Ann 53 MI UIP 9/07>

July 22, 2009

Joann, Yep, I agree. You probably need it at night too. it is important to keep saturation up to keep your other organs healthy.Hang in, you'll learn all this stuff. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Hi JoAnn, I agree with Bruce 100%. My Dr. At Emory said it is very important to use O2 at night and while sleeping. I also found out I had sleep apnea, and I hook up the O2 to my machine. During my sleep study my O2 dropped in the low 80's. Welcome to the club, Joe Lamenskle ï»¿ ï»¿ JOE & JOANIE LAMENSKIE IPF JAN. 2008 <53_c_link.gif> -- Re: New Best Friend JoannA couple more questions. Do you have an oximeter? If not, please getone.Second, you mention forgetting to put it on in the morning. I can'timagine you need it during the day but not at night. Have you had anovernight oximeter check done? If not, request one immediately.Everyone's sats drop during sleep and so for a PF'er its normal thatthey would need oxygen during sleep. My first test after diagnosis, Iwas dropping below 90% over 25% of the time. Now, this is a person whocould lay in bed at that time awake and be at 98-99% after laying therea while.>> I just started on 02 2 weeks ago. I feel soo much better that I callit my New Best Friend. Right now my Dr. is still trying to find out howmuch 02 I need and they are still adjusting it. I started on 2 lpmw/exertion, now it has been raised to 4 lpm w/exertion. feel so muchbeter now, I have more energy, I'm not so tired anymore. Now when I goto Pulmonary Rehab my sats stay in the 90's.>> I want to thank everyone of you who suggested I call my Dr. myselfinstead of waiting until my PR was over and they sent the report to myDr. I still have 2 weeks of PR yet, this means I got a 4 week jump onthem. THANK YOU.>> I still have the problem that I forget to put my 02 on in he morning. I will get up in the morning an start doing things around the house andrealize that I'm having trouble breathing then I will remember my 02. Sometimes I even go away from the house and forget to take it, then Ihave to go home and get it. Soon, hopefully, I will remember it all thetime. Did anyone else have this problem when they were on 02 w/exertiononly?> Have a nice day everyone. Me and my Best Friend are off for the day.>> Jo Ann 53 MI UIP 9/07> <imstp_animation_panda_en_020908.gif>

July 26, 2009

nne,

I may have posted a note similar to this. I am a firm believer in checking my own O2 levels. I will be the one who knows before my pulmonologist when the time comes to start oxygen therapy again. My rule of thumb, and this was told to me by my pulmonologist, that oxygen levels should not go below 90% for any length of time. Any time your heart begins to beat too much faster on standing or walking, that is a sign that your body is requiring more oxygen than your lungs can provide. An oximeter will cost from between $50 and $600. I have the Onyx o2 meter, which costs around $300. Check on www.portablenebs.com for more choices. Here is what my oxymeter looks like. It will fit easily into a pocket or purse, and I use it every day. You will need one sooner or later, so now is certainly a good time to consider a wise purchase. It is a good way to protect your health.

Jerry/Mississippi/54/IPF/April 05 Who believes that hard times help us appreciate the good times even more.

Subject: Re: New Best FriendTo: Breathe-Support Date: Sunday, July 26, 2009, 3:59 PM

Had VATS 7/22 and the surgeon prescribed O2 at night now and it is so WONDERFUL I don't feel as depressed and tired all day. But I still get out of breath, B/P going up along with heartrate when I do anything during the day. Should I ask for it at post-op checkup? At all checkups so far, this has happened in the office with sats going down to 88 and then rising within 5 minutes. Or is the fact that sats don't stay in 80's an indication that I don't need it during the day. I'm very confused.- nne > >> > I just started on 02 2 weeks ago. I feel soo much better that I call it my New Best Friend. Right now my Dr. is still trying to find out how much 02 I need and they are still adjusting it. I started on 2 lpm w/exertion, now it has been raised to 4 lpm w/exertion. feel so much beter now, I have more energy, I'm not so tired anymore. Now when I go to Pulmonary Rehab my sats stay in the 90's.> > > > I want to thank everyone of you who suggested I call my Dr. myself instead of waiting until my PR was over and they sent the report to my Dr. I still have 2 weeks of PR yet, this means I got a 4 week jump on them. THANK YOU. > > > > I still have the problem that I forget to put my 02 on in he morning. I will get up in the morning an start doing things

around the house and realize that I'm having trouble breathing then I will remember my 02. Sometimes I even go away from the house and forget to take it, then I have to go home and get it. Soon, hopefully, I will remember it all the time. Did anyone else have this problem when they were on 02 w/exertion only? > > Have a nice day everyone. Me and my Best Friend are off for the day.> > > > Jo Ann 53 MI UIP 9/07> >> > Thank You again everyone. I was Dx in Aug. 08 with Sleep Apnea. I have a CPAP machine. I asked my Dr if I should be using 02 at night also and they told me No. Once again I will take your advice and call my Dr. tommorrow and ask again if I should be using 02 at night with my CPAP.> Oh how I wish that all doctors would get with the same program and treat everyone the same so that we wouldn't have to tell our doctors when we need something, they should know, they are the ones that

went to school to become a doctor.> Bruce; no I don't have an oximeter. I had one but my Granddaughters bit off the button. I used to use it and I would tell my Dr how low my sats were dropping and he always said that wasn't possible because they weren't that low when I was in the office. I kind of quit using it because he told me it probably wasn't right. I have since proven to him that it was right. I am trying to buy another one.> > Could someone please tell me how to set up my signature so that it comes up automately so I don't have to type it everytime I post.> > Jo Ann 53 MI UIP 9/07>

July 26, 2009

Jerry...I got mine from the same place...mine is yellow, cost $65.

I'm glad these are available to us.

Jack makes one available to anyone who cannot afford the $65. He pays for it. We have angels on-board here for sure.

Come to think of it, we're all angels with different jobs.

I'm sure you had a great walk today!

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: New Best FriendTo: Breathe-Support Date: Sunday, July 26, 2009, 3:59 PM

Had VATS 7/22 and the surgeon prescribed O2 at night now and it is so WONDERFUL I don't feel as depressed and tired all day. But I still get out of breath, B/P going up along with heartrate when I do anything during the day. Should I ask for it at post-op checkup? At all checkups so far, this has happened in the office with sats going down to 88 and then rising within 5 minutes. Or is the fact that sats don't stay in 80's an indication that I don't need it during the day. I'm very confused.- nne > >> > I just started on 02 2 weeks ago. I feel soo much better that I call it my New Best Friend. Right now my Dr. is still trying to find out how much 02 I need and they are still adjusting it. I started on 2 lpm w/exertion, now it has been raised to 4 lpm w/exertion. feel so much beter now, I have more energy, I'm not so tired anymore. Now when I go to Pulmonary Rehab my sats stay in the 90's.> > > > I want to thank everyone of you who suggested I call my Dr. myself instead of waiting until my PR was over and they sent the report to my Dr. I still have 2 weeks of PR yet, this means I got a 4 week jump on them. THANK YOU. > > > > I still have the problem that I forget to put my 02 on in he morning. I will get up in the morning an start doing things around the house and realize that I'm having trouble breathing then I will remember my 02. Sometimes I even go away from the house and forget to take it, then I have to go home and get it. Soon, hopefully, I will remember it all the time. Did anyone else have this problem when they were on 02 w/exertion only? > > Have a nice day everyone. Me and my Best Friend are off for the day.> > > > Jo Ann 53 MI UIP 9/07> >> > Thank You again everyone. I was Dx in Aug. 08 with Sleep Apnea. I have a CPAP machine. I asked my Dr if I should be using 02 at night also and they told me No. Once again I will take your advice and call my Dr. tommorrow and ask again if I should be using 02 at night with my CPAP.> Oh how I wish that all doctors would get with the same program and treat everyone the same so that we wouldn't have to tell our doctors when we need something, they should know, they are the ones that went to school to become a doctor.> Bruce; no I don't have an oximeter. I had one but my Granddaughters bit off the button. I used to use it and I would tell my Dr how low my sats were dropping and he always said that wasn't possible because they weren't that low when I was in the office. I kind of quit using it because he told me it probably wasn't right. I have since proven to him that it was right. I am trying to buy another one.> > Could someone please tell me how to set up my signature so that it comes up automately so I don't have to type it everytime I post.> > Jo Ann 53 MI UIP 9/07>

July 26, 2009

Sher,

Every day I am touched by something someone does or what someone writes on this board. It has taken something like IPF to help me realize how blessed I am in this life. I am just about to get on that treadmill while it rains outside, Sher. I'll give that little oxymeter a little workout too. Enjoy your day up there in God's country!

Jerry/Mississippi/54/IPF/dx April 05 Who believes that hard times help us appreciate the good times even more.

From: teddyspenguins <teddyspenguins@ yahoo.com>Subject: Re: New Best FriendTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 26, 2009, 3:59 PM

Had VATS 7/22 and the surgeon prescribed O2 at night now and it is so WONDERFUL I don't feel as depressed and tired all day. But I still get out of breath, B/P going up along with heartrate when I do anything during the day. Should I ask for it at post-op checkup? At all checkups so far, this has happened in the office with sats going down to 88 and then rising within 5 minutes. Or is the fact that sats don't stay in 80's an indication that I don't need it during the day. I'm very confused.- nne > >> > I just started on 02 2 weeks ago. I feel soo much better that I call it my New Best Friend. Right now my Dr. is still trying to find out how much 02 I need and they are still adjusting it. I started on 2 lpm w/exertion, now it has been raised to 4 lpm w/exertion. feel so much beter now, I have more energy, I'm not so tired anymore. Now when I go to Pulmonary Rehab my sats stay in the 90's.> > > > I want to thank everyone of you who suggested I call my Dr. myself instead of waiting until my PR was over and they sent the report to my Dr. I still have 2 weeks of PR yet, this means I got a 4 week jump on them. THANK YOU. > > > > I still have the problem that I forget to put my 02 on in he morning. I will get up in the morning an start doing things around the house and realize that I'm having trouble breathing then I will remember my 02. Sometimes I even go away from the house and

forget to take it, then I have to go home and get it. Soon, hopefully, I will remember it all the time. Did anyone else have this problem when they were on 02 w/exertion only? > > Have a nice day everyone. Me and my Best Friend are off for the day.> > > > Jo Ann 53 MI UIP 9/07> >> > Thank You again everyone. I was Dx in Aug. 08 with Sleep Apnea. I have a CPAP machine. I asked my Dr if I should be using 02 at night also and they told me No. Once again I will take your advice and call my Dr. tommorrow and ask again if I should be using 02 at night with my CPAP.> Oh how I wish that all doctors would get with the same program and treat everyone the same so that we wouldn't have to tell our doctors when we need something, they should know, they are the ones that went to school to become a doctor.> Bruce; no I don't have an oximeter. I had one but my Granddaughters bit off the button. I used

to use it and I would tell my Dr how low my sats were dropping and he always said that wasn't possible because they weren't that low when I was in the office. I kind of quit using it because he told me it probably wasn't right. I have since proven to him that it was right. I am trying to buy another one.> > Could someone please tell me how to set up my signature so that it comes up automately so I don't have to type it everytime I post.> > Jo Ann 53 MI UIP 9/07>

July 26, 2009

nne,

..

I just finished doing a little test on the treadmill. I played Loui Loui and turned up the speed to 3.6 MPH until my sats went to 86%, then stepped off. It only took 15 seconds to get back above 90%. Five minutes getting back to 90% seems a little long at first glance.

We are all so different. The rate at which your blood oxygen level increases to a safe level depends on so many factors: heart efficiency, medications, lung health, weight, blood make-up, elevation above sea level and so many more. Also you must consider that your lung biopsy was just recently completed. As mine did eventually after biopsy, your oxygen levels may increase gradually.

Unfortunately for us, we must avoid getting into that oxygen-deficit spiral that comes when we overdo it; Our heart tries to compensate for lack of oxygen by increasing its pumping rate, and that in itself contributes to this spiral we are so familiar with. I try to avoid this at all cost, for the sake of my lungs as well as my heart. I find it helpful to sit back with a cold glass of ice water and breathe slow deep breaths until I know I am back in the green.

Just as you know when to ask your opthomologist for a new pair of glasses, with an oxymeter, you will know when it is time to ask your surgeon or pulmonologist for help with keeping your oxygen saturation at a healthy level. You can ask for it for the short term while you are still recovering. Then check your sats regularly and keep a diary of how you feel through the day. Take care of yourself.

Jerry/Mississippi/54/IPF/dx April 05.Who believes that hard times help us appreciate the good times even more.

Subject: Re: New Best FriendTo: Breathe-Support Date: Sunday, July 26, 2009, 3:59 PM

Had VATS 7/22 and the surgeon prescribed O2 at night now and it is so WONDERFUL I don't feel as depressed and tired all day. But I still get out of breath, B/P going up along with heartrate when I do anything during the day. Should I ask for it at post-op checkup? At all checkups so far, this has happened in the office with sats going down to 88 and then rising within 5 minutes. Or is the fact that sats don't stay in 80's an indication that I don't need it during the day. I'm very confused.- nne > >> > I just started on 02 2 weeks ago. I feel soo much better that I call it my New Best Friend. Right now my Dr. is still trying to find out how much 02 I need and they are still adjusting it. I started on 2 lpm w/exertion, now it has been raised to 4 lpm w/exertion. feel so much beter now, I have more energy, I'm not so tired anymore. Now when I go to Pulmonary Rehab my sats stay in the 90's.> > > > I want to thank everyone of you who suggested I call my Dr. myself instead of waiting until my PR was over and they sent the report to my Dr. I still have 2 weeks of PR yet, this means I got a 4 week jump on them. THANK YOU. > > > > I still have the problem that I forget to put my 02 on in he morning. I will get up in the morning an start doing things

around the house and realize that I'm having trouble breathing then I will remember my 02. Sometimes I even go away from the house and forget to take it, then I have to go home and get it. Soon, hopefully, I will remember it all the time. Did anyone else have this problem when they were on 02 w/exertion only? > > Have a nice day everyone. Me and my Best Friend are off for the day.> > > > Jo Ann 53 MI UIP 9/07> >> > Thank You again everyone. I was Dx in Aug. 08 with Sleep Apnea. I have a CPAP machine. I asked my Dr if I should be using 02 at night also and they told me No. Once again I will take your advice and call my Dr. tommorrow and ask again if I should be using 02 at night with my CPAP.> Oh how I wish that all doctors would get with the same program and treat everyone the same so that we wouldn't have to tell our doctors when we need something, they should know, they are the ones that

went to school to become a doctor.> Bruce; no I don't have an oximeter. I had one but my Granddaughters bit off the button. I used to use it and I would tell my Dr how low my sats were dropping and he always said that wasn't possible because they weren't that low when I was in the office. I kind of quit using it because he told me it probably wasn't right. I have since proven to him that it was right. I am trying to buy another one.> > Could someone please tell me how to set up my signature so that it comes up automately so I don't have to type it everytime I post.> > Jo Ann 53 MI UIP 9/07>

July 26, 2009

Jerry,

The Lincare people just left my house and I learned things that I should have known earlier and I will take a lot if not all the responsiblity for not knowing more. I thought of myself as really doing good with my disease because until the past month i did not "get out of breath". In my little oxygen deprived brain the pulseox reading was not nearly as important as how my breathing felt. The first 6 minute walk I failed in the study i am in meant little to me because when the alarm sounded i could have walked considerably farther,therfore, the pulseox was wrong. Oxygen was recommended to me but what was not explained was what damage could be done when O2 level dropped to a certain level and there was no supplimental O2 to recover. So when I went to my docs they would ask how I felt my response was fine because i could walk 30 min on treadmill without being out of breath or gasping for air, therefore

there really was not a reason to use O2 until I got out of breath recently.. (to be continued)

To: Breathe-Support Sent: Sunday, July 26, 2009 3:30:48 PMSubject: Re: Re: New Best Friend

nne,

..

I just finished doing a little test on the treadmill. I played Loui Loui and turned up the speed to 3.6 MPH until my sats went to 86%, then stepped off. It only took 15 seconds to get back above 90%. Five minutes getting back to 90% seems a little long at first glance.

We are all so different. The rate at which your blood oxygen level increases to a safe level depends on so many factors: heart efficiency, medications, lung health, weight, blood make-up, elevation above sea level and so many more. Also you must consider that your lung biopsy was just recently completed. As mine did eventually after biopsy, your oxygen levels may increase gradually.

Unfortunately for us, we must avoid getting into that oxygen-deficit spiral that comes when we overdo it; Our heart tries to compensate for lack of oxygen by increasing its pumping rate, and that in itself contributes to this spiral we are so familiar with. I try to avoid this at all cost, for the sake of my lungs as well as my heart. I find it helpful to sit back with a cold glass of ice water and breathe slow deep breaths until I know I am back in the green.

Just as you know when to ask your opthomologist for a new pair of glasses, with an oxymeter, you will know when it is time to ask your surgeon or pulmonologist for help with keeping your oxygen saturation at a healthy level. You can ask for it for the short term while you are still recovering. Then check your sats regularly and keep a diary of how you feel through the day. Take care of yourself.

Jerry/Mississippi/ 54/IPF/dx April 05.Who believes that hard times help us appreciate the good times even more.

From: teddyspenguins <teddyspenguins@ yahoo.com>Subject: Re: New Best FriendTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 26, 2009, 3:59 PM

Had VATS 7/22 and the surgeon prescribed O2 at night now and it is so WONDERFUL I don't feel as depressed and tired all day. But I still get out of breath, B/P going up along with heartrate when I do anything during the day. Should I ask for it at post-op checkup? At all checkups so far, this has happened in the office with sats going down to 88 and then rising within 5 minutes. Or is the fact that sats don't stay in 80's an indication that I don't need it during the day. I'm very confused.- nne > >> > I just started on 02 2 weeks ago. I feel soo much better that I call it my New Best Friend. Right now my Dr. is still trying to find out how much 02 I need and they are still adjusting it. I started on 2 lpm w/exertion, now it has been raised to 4 lpm w/exertion. feel so much beter now, I have more energy, I'm not so tired anymore. Now when I go to Pulmonary Rehab my sats stay in the 90's.> > > > I want to thank everyone of you who suggested I call my Dr. myself instead of waiting until my PR was over and they sent the report to my Dr. I still have 2 weeks of PR yet, this means I got a 4 week jump on them. THANK YOU. > > > > I still have the problem that I forget to put my 02 on in he morning. I will get up in the morning an start doing things around the house and realize that I'm having trouble breathing then I will remember my 02. Sometimes I even go away from the house and

forget to take it, then I have to go home and get it. Soon, hopefully, I will remember it all the time. Did anyone else have this problem when they were on 02 w/exertion only? > > Have a nice day everyone. Me and my Best Friend are off for the day.> > > > Jo Ann 53 MI UIP 9/07> >> > Thank You again everyone. I was Dx in Aug. 08 with Sleep Apnea. I have a CPAP machine. I asked my Dr if I should be using 02 at night also and they told me No. Once again I will take your advice and call my Dr. tommorrow and ask again if I should be using 02 at night with my CPAP.> Oh how I wish that all doctors would get with the same program and treat everyone the same so that we wouldn't have to tell our doctors when we need something, they should know, they are the ones that went to school to become a doctor.> Bruce; no I don't have an oximeter. I had one but my Granddaughters bit off the button. I used

to use it and I would tell my Dr how low my sats were dropping and he always said that wasn't possible because they weren't that low when I was in the office. I kind of quit using it because he told me it probably wasn't right. I have since proven to him that it was right. I am trying to buy another one.> > Could someone please tell me how to set up my signature so that it comes up automately so I don't have to type it everytime I post.> > Jo Ann 53 MI UIP 9/07>

July 26, 2009

sats vary with activity

when sitting they will be much higher than when you start moving around

not that i just need o2 for exertion and at bedtime -- i put it on when doing the laundry (requires bending), when i know that i will do a lot of talking, walking the dog -- the liters per minute varies with the activity that i am doing

your body and your oximeter will tell when you need o2 and how much you need

with this stupid disease, the SAT varies

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: New Best FriendTo: Breathe-Support Date: Sunday, July 26, 2009, 11:59 AM

Had VATS 7/22 and the surgeon prescribed O2 at night now and it is so WONDERFUL I don't feel as depressed and tired all day. But I still get out of breath, B/P going up along with heartrate when I do anything during the day. Should I ask for it at post-op checkup? At all checkups so far, this has happened in the office with sats going down to 88 and then rising within 5 minutes. Or is the fact that sats don't stay in 80's an indication that I don't need it during the day. I'm very confused.- nne > >> > I just started on 02 2 weeks ago. I feel soo much better that I call it my New Best Friend. Right now my Dr. is still trying to find out how much 02 I need and they are still adjusting it. I started on 2 lpm w/exertion, now it has been raised to 4 lpm w/exertion. feel so much beter now, I have more energy, I'm not so tired anymore. Now when I go to Pulmonary Rehab my sats stay in the 90's.> > > > I want to thank everyone of you who suggested I call my Dr. myself instead of waiting until my PR was over and they sent the report to my Dr. I still have 2 weeks of PR yet, this means I got a 4 week jump on them. THANK YOU. > > > > I still have the problem that I forget to put my 02 on in he morning. I will get up in the morning an start doing things

around the house and realize that I'm having trouble breathing then I will remember my 02. Sometimes I even go away from the house and forget to take it, then I have to go home and get it. Soon, hopefully, I will remember it all the time. Did anyone else have this problem when they were on 02 w/exertion only? > > Have a nice day everyone. Me and my Best Friend are off for the day.> > > > Jo Ann 53 MI UIP 9/07> >> > Thank You again everyone. I was Dx in Aug. 08 with Sleep Apnea. I have a CPAP machine. I asked my Dr if I should be using 02 at night also and they told me No. Once again I will take your advice and call my Dr. tommorrow and ask again if I should be using 02 at night with my CPAP.> Oh how I wish that all doctors would get with the same program and treat everyone the same so that we wouldn't have to tell our doctors when we need something, they should know, they are the ones that

went to school to become a doctor.> Bruce; no I don't have an oximeter. I had one but my Granddaughters bit off the button. I used to use it and I would tell my Dr how low my sats were dropping and he always said that wasn't possible because they weren't that low when I was in the office. I kind of quit using it because he told me it probably wasn't right. I have since proven to him that it was right. I am trying to buy another one.> > Could someone please tell me how to set up my signature so that it comes up automately so I don't have to type it everytime I post.> > Jo Ann 53 MI UIP 9/07>

July 26, 2009

my oximeter takes the place of a necklace

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: New Best FriendTo: Breathe-Support Date: Sunday, July 26, 2009, 1:26 PM

nne,

I may have posted a note similar to this. I am a firm believer in checking my own O2 levels. I will be the one who knows before my pulmonologist when the time comes to start oxygen therapy again. My rule of thumb, and this was told to me by my pulmonologist, that oxygen levels should not go below 90% for any length of time. Any time your heart begins to beat too much faster on standing or walking, that is a sign that your body is requiring more oxygen than your lungs can provide. An oximeter will cost from between $50 and $600. I have the Onyx o2 meter, which costs around $300. Check on www.portablenebs. com for more choices. Here is what my oxymeter looks like. It will fit easily into a pocket or purse, and I use it every day. You will need one sooner or later, so now is certainly a good time to consider a wise purchase. It is a good way to protect your

health.

Jerry/Mississippi/ 54/IPF/April 05 Who believes that hard times help us appreciate the good times even more.

From: teddyspenguins <teddyspenguins@ yahoo.com>Subject: Re: New Best FriendTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 26, 2009, 3:59 PM

Had VATS 7/22 and the surgeon prescribed O2 at night now and it is so WONDERFUL I don't feel as depressed and tired all day. But I still get out of breath, B/P going up along with heartrate when I do anything during the day. Should I ask for it at post-op checkup? At all checkups so far, this has happened in the office with sats going down to 88 and then rising within 5 minutes. Or is the fact that sats don't stay in 80's an indication that I don't need it during the day. I'm very confused.- nne > >> > I just started on 02 2 weeks ago. I feel soo much better that I call it my New Best Friend. Right now my Dr. is still trying to find out how much 02 I need and they are still adjusting it. I started on 2 lpm w/exertion, now it has been raised to 4 lpm w/exertion. feel so much beter now, I have more energy, I'm not so tired anymore. Now when I go to Pulmonary Rehab my sats stay in the 90's.> > > > I want to thank everyone of you who suggested I call my Dr. myself instead of waiting until my PR was over and they sent the report to my Dr. I still have 2 weeks of PR yet, this means I got a 4 week jump on them. THANK YOU. > > > > I still have the problem that I forget to put my 02 on in he morning. I will get up in the morning an start doing things around the house and realize that I'm having trouble breathing then I will remember my 02. Sometimes I even go away from the house and

forget to take it, then I have to go home and get it. Soon, hopefully, I will remember it all the time. Did anyone else have this problem when they were on 02 w/exertion only? > > Have a nice day everyone. Me and my Best Friend are off for the day.> > > > Jo Ann 53 MI UIP 9/07> >> > Thank You again everyone. I was Dx in Aug. 08 with Sleep Apnea. I have a CPAP machine. I asked my Dr if I should be using 02 at night also and they told me No. Once again I will take your advice and call my Dr. tommorrow and ask again if I should be using 02 at night with my CPAP.> Oh how I wish that all doctors would get with the same program and treat everyone the same so that we wouldn't have to tell our doctors when we need something, they should know, they are the ones that went to school to become a doctor.> Bruce; no I don't have an oximeter. I had one but my Granddaughters bit off the button. I used

to use it and I would tell my Dr how low my sats were dropping and he always said that wasn't possible because they weren't that low when I was in the office. I kind of quit using it because he told me it probably wasn't right. I have since proven to him that it was right. I am trying to buy another one.> > Could someone please tell me how to set up my signature so that it comes up automately so I don't have to type it everytime I post.> > Jo Ann 53 MI UIP 9/07>

July 26, 2009

nne,

If you need oxygen at night it's very likely you need it during the day. If your sats fall regularly into the 80's during activity you need oxygen. When was your last 6 minute walk? Your doctor can also order a 24 hour oximeter test.

5 minutes in my opinion (and it's only an opinion) is too long to recover from the 80's back into the 90's. The stress you're putting on all your organs but especially your heart is harmful. The idea is to protect your heart and your pulmonary arteries from that stress in order to prevent damage.

Jerry offered you some very good advice. I know it's difficult to challenge your doctors and ask for what you need but it must be done!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, July 26, 2009 11:59:13 AMSubject: Re: New Best Friend

Had VATS 7/22 and the surgeon prescribed O2 at night now and it is so WONDERFUL I don't feel as depressed and tired all day. But I still get out of breath, B/P going up along with heartrate when I do anything during the day. Should I ask for it at post-op checkup? At all checkups so far, this has happened in the office with sats going down to 88 and then rising within 5 minutes. Or is the fact that sats don't stay in 80's an indication that I don't need it during the day. I'm very confused.- nne > >> > I just started on 02 2 weeks ago. I feel soo much better that I call it my New Best Friend. Right now my Dr. is still trying to find out how much 02 I need and they are still adjusting it. I started on 2 lpm w/exertion, now it has been raised to 4 lpm w/exertion. feel so much beter now, I have more energy, I'm not so tired anymore. Now when I go to Pulmonary Rehab my sats stay in the 90's.> > > > I want to thank everyone of you who suggested I call my Dr. myself instead of waiting until my PR was over and they sent the report to my Dr. I still have 2 weeks of PR yet, this means I got a 4 week jump on them. THANK YOU. > > > > I still have the problem that I forget to put my 02 on in he morning. I will get up in the morning an start doing things around the house and realize that I'm having trouble breathing then I will remember my 02. Sometimes I even go

away from the house and forget to take it, then I have to go home and get it. Soon, hopefully, I will remember it all the time. Did anyone else have this problem when they were on 02 w/exertion only? > > Have a nice day everyone. Me and my Best Friend are off for the day.> > > > Jo Ann 53 MI UIP 9/07> >> > Thank You again everyone. I was Dx in Aug. 08 with Sleep Apnea. I have a CPAP machine. I asked my Dr if I should be using 02 at night also and they told me No. Once again I will take your advice and call my Dr. tommorrow and ask again if I should be using 02 at night with my CPAP.> Oh how I wish that all doctors would get with the same program and treat everyone the same so that we wouldn't have to tell our doctors when we need something, they should know, they are the ones that went to school to become a doctor.> Bruce; no I don't have an oximeter. I had one but my Granddaughters bit

off the button. I used to use it and I would tell my Dr how low my sats were dropping and he always said that wasn't possible because they weren't that low when I was in the office. I kind of quit using it because he told me it probably wasn't right. I have since proven to him that it was right. I am trying to buy another one.> > Could someone please tell me how to set up my signature so that it comes up automately so I don't have to type it everytime I post.> > Jo Ann 53 MI UIP 9/07>

July 26, 2009

Ronnie,

Have you measured your sats with and without O2 at a given speed on your treadmill? I found out the hard way after my biopsy (06/05) that I was doing myself possible harm by trying to "tuff it out". That's probably one of those unhealthy male attitudes we find ourselves strangled with. When I gave in and started using as much O2 as I needed, I started improving and feeling much more like doing what I knew was good for me. I have learned doctors don't have nearly enough time to prepare us for all we will have to face. 30 minutes every 4 to 6 months is hardly enough time to educate a patient. I am so thankful for this board. Had I known about this board 4 years ago, I would have know the way.

Jerry/Mississippi/54/IPF/dx April 05

Jerry?Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

From: teddyspenguins <teddyspenguins@ yahoo.com>Subject: Re: New Best FriendTo: Breathe-Support@ yahoogroups. comDate: Sunday, July 26, 2009, 3:59 PM

Had VATS 7/22 and the surgeon prescribed O2 at night now and it is so WONDERFUL I don't feel as depressed and tired all day. But I still get out of breath, B/P going up along with heartrate when I do anything during the day. Should I ask for it at post-op checkup? At all checkups so far, this has happened in the office with sats going down to 88 and then rising within 5 minutes. Or is the fact that sats don't stay in 80's an indication that I don't need it during the day. I'm very confused.- nne > >> > I just started on 02 2 weeks ago. I feel soo much better that I call it my New Best Friend. Right now my Dr. is still trying to find out how much 02 I need and they are still adjusting it. I started on 2 lpm w/exertion, now it has been raised to 4 lpm w/exertion. feel so much beter now, I have more energy, I'm not so tired anymore. Now when I go to Pulmonary Rehab my sats stay in the 90's.> > > > I want to thank everyone of you who suggested I call my Dr. myself instead of waiting until my PR was over and they sent the report to my Dr. I still have 2 weeks of PR yet, this means I got a 4 week jump on them. THANK YOU. > > > > I still have the problem that I forget to put my 02 on in he morning. I will get up in the morning an start doing things around the house and realize that I'm having trouble breathing then I will remember my 02. Sometimes I even go away from the house and

forget to take it, then I have to go home and get it. Soon, hopefully, I will remember it all the time. Did anyone else have this problem when they were on 02 w/exertion only? > > Have a nice day everyone. Me and my Best Friend are off for the day.> > > > Jo Ann 53 MI UIP 9/07> >> > Thank You again everyone. I was Dx in Aug. 08 with Sleep Apnea. I have a CPAP machine. I asked my Dr if I should be using 02 at night also and they told me No. Once again I will take your advice and call my Dr. tommorrow and ask again if I should be using 02 at night with my CPAP.> Oh how I wish that all doctors would get with the same program and treat everyone the same so that we wouldn't have to tell our doctors when we need something, they should know, they are the ones that went to school to become a doctor.> Bruce; no I don't have an oximeter. I had one but my Granddaughters bit off the button. I used

to use it and I would tell my Dr how low my sats were dropping and he always said that wasn't possible because they weren't that low when I was in the office. I kind of quit using it because he told me it probably wasn't right. I have since proven to him that it was right. I am trying to buy another one.> > Could someone please tell me how to set up my signature so that it comes up automately so I don't have to type it everytime I post.> > Jo Ann 53 MI UIP 9/07>

July 26, 2009

Ronnie,

Your experience echoes my own in some ways. If I go without oxygen or don't have it turned up high enough to meet my needs, my sats will drop but time passes before I actually feel different. I sometimes won't feel short of breath until I stop to rest. That's when I'm coughing and/or gasping.

I also learned the hard way that I had to check my sats and not necessarily trust the way I think I feel. Sometimes I think my body has accomodated to a lack of oxygen and doesn't react with "feeling lousy" as quickly as it should. That's my theory anyway.

Whatever the truth is the most important thing is check our sats, check our sats and then after that check our sats.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, July 26, 2009 6:06:06 PMSubject: Re: Re: New Best Friend

Jerry,

The Lincare people just left my house and I learned things that I should have known earlier and I will take a lot if not all the responsiblity for not knowing more. I thought of myself as really doing good with my disease because until the past month i did not "get out of breath". In my little oxygen deprived brain the pulseox reading was not nearly as important as how my breathing felt. The first 6 minute walk I failed in the study i am in meant little to me because when the alarm sounded i could have walked considerably farther,therfore, the pulseox was wrong. Oxygen was recommended to me but what was not explained was what damage could be done when O2 level dropped to a certain level and there was no supplimental O2 to recover. So when I went to my docs they would ask how I felt my response was fine because i could walk 30 min on treadmill without being out of breath or gasping for air, therefore

there really was not a reason to use O2 until I got out of breath recently.. (to be continued)

From: Jerry Brown <jerryb888 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, July 26, 2009 3:30:48 PMSubject: Re: Re: New Best Friend