Re: Re: O2 Question

[Guest guest]

Bruce: Thank you that makes sense. I have an appt with the pul it was his nurse that told me however still. Now that I think about it the therp is with the O2 company and now it makes sense that her mindset is with copd. Could you see any one of us trying to recover without turning it up? Is there a danger with pf patients getting too much? My blood work always shows high carbon diox. another question for pul.

Re: O2 Question

AmyYou should talk to your pulmonologist. However, if this nurse andrespiratory therapist aren't part of the pulmonologist' s office, theyare very likely use to COPD and not very use to PF. For COPD theirstatement may make sense. For PF it is in conflict with what the rest ofus have been told. The reason you'd have to adjust is that there is noway a doctor sitting in an office could know what you need underdifferent conditions. With COPD there is danger of two much oxygen andthats what many therapists are use to.>> Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpmdepending upon rest etc. I do admit I wear the pulse ox a lot and adjustaccordingly Now the

nurse and resp therp tell me I should never turn upthe O2 if I am having trouble rest purse lip etc. How does mosteveryone handle there O2? If I drop to 78 and I just suppose to wait orturn it up?> Amy>

[Guest guest]

Amy,

This added information of high CO2 makes it even more important to discuss this with your doctor. You want to make sure your body isn't having difficulty getting rid of CO2.

Make a big old list of questions, my doctors expect me to pull out my notepad full of ???? LOL

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Re: O2 Question

AmyYou should talk to your pulmonologist. However, if this nurse andrespiratory therapist aren't part of the pulmonologist' s office, theyare very likely use to COPD and not very use to PF. For COPD theirstatement may make sense. For PF it is in conflict with what the rest ofus have been told. The reason you'd have to adjust is that there is noway a doctor sitting in an office could know what you need underdifferent conditions. With COPD there is danger of two much oxygen andthats what many therapists are use to.>> Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpmdepending upon rest etc. I do admit I wear the pulse ox a lot and adjustaccordingly Now the

nurse and resp therp tell me I should never turn upthe O2 if I am having trouble rest purse lip etc. How does mosteveryone handle there O2? If I drop to 78 and I just suppose to wait orturn it up?> Amy>

[Guest guest]

Yes I am going to make a big list and I am not leaving until they are all answered. So many times we let the dr take charge and set the pace and we do not get everything answered. My co2 that I got back with blood work from another dr were 37 and I know that is high. I do not understand why?

Re: O2 Question

AmyYou should talk to your pulmonologist. However, if this nurse andrespiratory therapist aren't part of the pulmonologist' s office, theyare very likely use to COPD and not very use to PF. For COPD theirstatement may make sense. For PF it is in conflict with what the rest ofus have been told. The reason you'd have to adjust is that there is noway a doctor sitting in an office could know what you need underdifferent conditions. With COPD there is danger of two much oxygen andthats what many therapists are use to.>> Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpmdepending upon rest etc. I do admit I wear the pulse ox a lot and adjustaccordingly Now the

nurse and resp therp tell me I should never turn upthe O2 if I am having trouble rest purse lip etc. How does mosteveryone handle there O2? If I drop to 78 and I just suppose to wait orturn it up?> Amy>

[Guest guest]

Hi MB, Got a crazy question for ya. My saturation is staying in the middle 90's BUT when I am doing a simple thing like loading the dishwasher or cleaning the stove top my legs nearly give out. Hurt and feel so weak. I have to come sit... Ideas??????? Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Amy,This added information of high CO2 makes it even more important to discuss this with your doctor. You want to make sure your body isn't having difficulty getting rid of CO2.Make a big old list of questions, my doctors expect me to pull out my notepad full of ???? LOL Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive       Re: O2 QuestionAmyYou should talk to your pulmonologist. However, if this nurse andrespiratory therapist aren't part of the pulmonologist' s office, theyare very likely use to COPD and not very use to PF. For COPD theirstatement may make sense. For PF it is in conflict with what the rest ofus have been told. The reason you'd have to adjust is that there is noway a doctor sitting in an office could know what you need underdifferent conditions. With COPD there is danger of two much oxygen andthats what many therapists are use to.>> Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpmdepending upon rest etc. I do admit I wear the pulse ox a lot and adjustaccordingly Now the nurse and resp therp tell me I should never turn upthe O2 if I am having trouble rest purse lip etc. How does mosteveryone handle there O2? If I drop to 78 and I just suppose to wait orturn it up?> Amy>

[Guest guest]

Peggy,

Hi there! My guess is that your legs are getting weak cause your body is sending all its resources to your upper body when you're doing something like loading the dishwasher or cleaning countertops or the stove. Because our lungs are so stiff, our diaphragm and intercostal (those muscles between our ribs) can't do the job of breathing by themselves. I remember in rehab they kept telling us that any time we use our upper bodies it takes more out of us because we use those muscles (shoulder, back and upper arms) to breathe in addition to whatever task we're doing.

So again my guess would be your legs are getting weak cause your strength is being used up in supporting your upper body in both breathing and doing whatever task you are doing. But Peggy remember this is just my guess and you might want to drop and email to your doctor and see what she thinks.

Here's my advice, QUIT EMPTYING THE DISHWASHER AND SIT IN YOUR RECLINER!

LOVE,

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Re: O2 Question

AmyYou should talk to your pulmonologist. However, if this nurse andrespiratory therapist aren't part of the pulmonologist' s office, theyare very likely use to COPD and not very use to PF. For COPD theirstatement may make sense. For PF it is in conflict with what the rest ofus have been told. The reason you'd have to adjust is that there is noway a doctor sitting in an office could know what you need underdifferent conditions. With COPD there is danger of two much oxygen andthats what many therapists are use to.>> Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpmdepending upon rest etc. I do admit I wear the pulse ox a lot and adjustaccordingly Now the nurse and resp therp tell me I should never turn upthe O2 if I am having trouble rest purse lip etc. How does mosteveryone handle there O2? If I drop to 78 and I just suppose to wait orturn it up?> Amy>

[Guest guest]

Oh Joyce honey do I ever understand being short...My recliner is the same, when I bought it, it was my size. Theres had the leather up graded and somehow my feet are 6" from the floor when I got it home. ... So I'm back to butt walking to the front of the chair. I will have had it two years in Nov. and it is right now getting a re-stuffing. seat, back, head-rest, arms.. Min price of 150.00. Oh I thought would have a total FIT. They just don't make things like they used to. Can you call and see if they might change it out for a petite. Be careful getting out of it.  My couch is like that. has to kick the foot thingie down.. hate it too. I stayed home from Church this morning just not feeling up to getting ready. Have a God Blessed day. Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Hi guys,My legs are so weak. I got new reclining sofa and chair.  When you want to get up, you are supposed to push the foot down to the floor with your feet.  Well, needless to say, we have a problem here.  A REAL PROBLEM.  Remember the news stories where they find a dead body just sitting in a chair.  Some of those were probably attibutable to furniture such as this! I picked out the last furniture so that it fit me.  This time, I let my husband choose.  My feet don't touch the floor when I scoot back.  I am trying not to complain, although everybody in the family hated my furniture choice.  But, I need to be able to get off of it. Hugs, Joyce D.Pulmonary Fibrosis 1997    Bronchiectasis 2004    Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)  Rejected for Transplant 2006 .....I will not forget you.  Behold, I have engraved you on the palm of my hands.  Isaiah 49: 15-16Hugs, Joyce D.Pulmonary Fibrosis 1997    Bronchiectasis 2004    Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)  Rejected for Transplant 2006 .....I will not forget you.  Behold, I have engraved you on the palm of my hands.  Isaiah 49: 15-16> >> > Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpm> depending upon rest etc. I do admit I wear the pulse ox a lot and adjust> accordingly Now the nurse and resp therp tell me I should never turn up> the O2 if I am having trouble rest purse lip etc. How does most> everyone handle there O2? If I drop to 78 and I just suppose to wait or> turn it up?> > Amy> >>

[Guest guest]

Peggy... sorry you are having some 'weak' problems. The changes aren't easy to cope with are they.

I'm much more sob then I "used to be".

Maybe you are doing too much...think?

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: O2 Question

AmyYou should talk to your pulmonologist. However, if this nurse andrespiratory therapist aren't part of the pulmonologist' s office, theyare very likely use to COPD and not very use to PF. For COPD theirstatement may make sense. For PF it is in conflict with what the rest ofus have been told. The reason you'd have to adjust is that there is noway a doctor sitting in an office could know what you need underdifferent conditions. With COPD there is danger of two much oxygen andthats what many therapists are use to.>> Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpmdepending upon rest etc. I do admit I wear the pulse ox a lot and adjustaccordingly Now the nurse and resp therp tell me I should never turn upthe O2 if I am having trouble rest purse lip etc. How does mosteveryone handle there O2? If I drop to 78 and I just suppose to wait orturn it up?> Amy>

[Guest guest]

Bruce... I agree with you...our problems "could be" one thing or a dozen other things. Like yourself, I'm doing the best I can do and I'm working on not berating myself if I'm not doing what I "used to do". For this perfectionist that's a tough call. However, it is getting easier.

I do what I can/want to and don't do what I cannot do/don't want to do. Wish I had learned this long years ago.

Had a visit w/Steve. He plans on going to Mexico in Sept or Oct. I'm waiting to hear what the occasion might be. I worry about him traveling alone but maybe he is not.

Take care. Hugs to you.

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: O2 Question

Peggy/SherOn those tasks that do as you described loading dishwasher to be orcleaning countertops or the stove, I might also suggest breaking themdown into smaller pieces if you insist on doing them. Maybe you have toload a few dishes and break, load a few more and break, etc. In justtransferring clothes from the washer to the dryer I have to do that. Icannot comfortably do a full washer load at once. So, I'll do a handfuland stand there still doing nothing and staring into space for a minuteand then do another handful.Also, who knows where any of us would be right now even without thisdisease. I know I've not felt as good the last couple of weeks but Idon't have any idea how much is PF or how much is autoimmune or how muchis something else wrong with me or how much is not exercising enough orhow much is overdoing it one day or how much is this 100+ degree weatheror how much is not being out as much because of the 100+ degree weatheror how much is needing to lose a few pounds or how much is just beingolder. All, I do know is to do the best I can, get to the doctor foranything abnormal, and accept that I have some limitations. I was withfriends last Wednesday evening and I got tired about 9:30 and still hadan hour drive home so I politely left rather than run an errand with oneand then perhaps played a game or something. I had just had too long aday as I'd had a doctor's appointment at 2, haircut after and thenheaded up to see them. In retrospect I know thats too much for me atthis point. Next time I go visit them I will be home resting during theafternoon and more ready.> >> > Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpm> depending upon rest etc. I do admit I wear the pulse ox a lot andadjust> accordingly Now the nurse and resp therp tell me I should never turnup> the O2 if I am having trouble rest purse lip etc. How does most> everyone handle there O2? If I drop to 78 and I just suppose to waitor> turn it up?> > Amy> >>

[Guest guest]

Sher I don't think I am doing to much. My stupid legs are just rebelling when I try to use them.. lolI don't really do much to speak of. Of course Dr. says My problem is I need to exercise. BUT about one more time hearing that---TO THE MOON--Ya know sometimes I think he really does GET IT...NOPE. I hear things from him that I ask Do you even know I have a lung disease.. ?????????????I think he has been on the caregivers site and they think they know everything about this disease.. They come up with some crazy things.. GGGGGRRRRR  All I can say is I am glad I have been married to him for so long or he would really get himself into trouble..  Take care and easy breathing to you this week.Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Peggy... sorry you are having some 'weak' problems. The changes aren't easy to cope with are they.I'm much more sob then I "used to be".Maybe you are doing too much...think?  MamaSher, age 69. IPF 3-06, OR.   NasturtiumsDon't fret about tomorrow, God is already there! Re: O2 QuestionAmyYou should talk to your pulmonologist. However, if this nurse andrespiratory therapist aren't part of the pulmonologist' s office, theyare very likely use to COPD and not very use to PF. For COPD theirstatement may make sense. For PF it is in conflict with what the rest ofus have been told. The reason you'd have to adjust is that there is noway a doctor sitting in an office could know what you need underdifferent conditions. With COPD there is danger of two much oxygen andthats what many therapists are use to.>> Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpmdepending upon rest etc. I do admit I wear the pulse ox a lot and adjustaccordingly Now the nurse and resp therp tell me I should never turn upthe O2 if I am having trouble rest purse lip etc. How does mosteveryone handle there O2? If I drop to 78 and I just suppose to wait orturn it up?> Amy>

[Guest guest]



Peggy...I'm happy to hear you are not doing too much. Any exertion brings up the sob for me. If I'm quiet I do well but I sure get tired of "sitting". No wonder my butt is so "round" hhaahahha.

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: O2 Question

AmyYou should talk to your pulmonologist. However, if this nurse andrespiratory therapist aren't part of the pulmonologist' s office, theyare very likely use to COPD and not very use to PF. For COPD theirstatement may make sense. For PF it is in conflict with what the rest ofus have been told. The reason you'd have to adjust is that there is noway a doctor sitting in an office could know what you need underdifferent conditions. With COPD there is danger of two much oxygen andthats what many therapists are use to.>> Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpmdepending upon rest etc. I do admit I wear the pulse ox a lot and adjustaccordingly Now the nurse and resp therp tell me I should never turn upthe O2 if I am having trouble rest purse lip etc. How does mosteveryone handle there O2? If I drop to 78 and I just suppose to wait orturn it up?> Amy>

[Guest guest]

Sher, Ya know, somedays I am happy to just sit and play games in this computer. BUT when I WANT to get up and go I find my get up and go has already went. My legs just feel like they are not getting 02. My saturation is from 92 to 95 sitting with no 02 on. On my feet it stays about 94,95 with 02.  legs still hurt. I really hate this disease. It scares me sometimes that I have had a couple drops and think I may be having one again. Think it's time I started journaling my journey.. crazy to have these thoughts for me.I have such a story inside that my family would freak out. You know the good, the bad and the ugly.LOL.. Oh well I'm glad the Olympics are on. Love to watch them..Thanks for the ear..   (^6^) Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Peggy...I'm happy to hear you are not doing too much. Any exertion brings up the sob for me. If I'm quiet I do well but I sure get tired of "sitting". No wonder my butt is so "round" hhaahahha. MamaSher, age 69. IPF 3-06, OR.   NasturtiumsDon't fret about tomorrow, God is already there! Re: O2 QuestionAmyYou should talk to your pulmonologist. However, if this nurse andrespiratory therapist aren't part of the pulmonologist' s office, theyare very likely use to COPD and not very use to PF. For COPD theirstatement may make sense. For PF it is in conflict with what the rest ofus have been told. The reason you'd have to adjust is that there is noway a doctor sitting in an office could know what you need underdifferent conditions. With COPD there is danger of two much oxygen andthats what many therapists are use to.>> Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpmdepending upon rest etc. I do admit I wear the pulse ox a lot and adjustaccordingly Now the nurse and resp therp tell me I should never turn upthe O2 if I am having trouble rest purse lip etc. How does mosteveryone handle there O2? If I drop to 78 and I just suppose to wait orturn it up?> Amy>

[Guest guest]



Peggy... I just put together a fresh fruit salad...took me maybe 15 minutes from beginning to end of clean up and I'm more or less 'panting' now. Short breaths!

My sats dropped to 87,88 so I'm using O2.

These drops are scary. It's an absolutely helpless feeling...

I always think journaling is a good idea...and especially when we want to leave our important thoughts and family information. Oh, yeah, I know the good the bad and the ugly ok but I'm glad I wrote the book.

I've been going between the Olympics and golf..

You always have my <(6)> 'ears' .

Do take good good care of you!

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: O2 Question

AmyYou should talk to your pulmonologist. However, if this nurse andrespiratory therapist aren't part of the pulmonologist' s office, theyare very likely use to COPD and not very use to PF. For COPD theirstatement may make sense. For PF it is in conflict with what the rest ofus have been told. The reason you'd have to adjust is that there is noway a doctor sitting in an office could know what you need underdifferent conditions. With COPD there is danger of two much oxygen andthats what many therapists are use to.>> Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpmdepending upon rest etc. I do admit I wear the pulse ox a lot and adjustaccordingly Now the nurse and resp therp tell me I should never turn upthe O2 if I am having trouble rest purse lip etc. How does mosteveryone handle there O2? If I drop to 78 and I just suppose to wait orturn it up?> Amy>