Re: Re: New Best Fr iend

[Guest guest]

there is a lady at penn who used two tubes connected to some sort of gizmo that enabled her to get (i foget exact details) 11- 14 lpms using just one canula

she also used 2 portable o2's, i forget the names, but like a more advanced marathon that's just continuous

the last time i saw her was after her transplant and she looked great, that was a few months ago

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, 9:48 PM

Anyway i did not know you can get more than 5 liters of O2 until i joined this group and read numbers like 25 liters. Of course, that requires differnt eqipment and wearing a mask of which I am trying to get accustomed. Lincare came and provided two large liquid O2 reserviors. He placed one in the back of our vehicle so I would have plenty of oxygen for the 3 1/2 hour trip. I am learning a lot and look forward to healthier and more comfortable days.

Ronnie

From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, July 26, 2009 6:56:04 PMSubject: Re: Re: New Best FriendMB, I can add to this 02 stuff. At times when I am on my feet I feel like my legs have NO 02 within just a few min. yet my sats are in the

90's. I ask my Dr about this and she said as the disease progresses that is part of it for some.. lucky me.. I can get around for 60 or 70 feet

(the length of my house and porch) but that is about it. I just can not believe how miserable this disease is. I thought it couldn't

get any tougher that giving up my independence. it does..

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

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

From: Ronnie Edmiston <ronnieedmiston@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: 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

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>