COPD & Emphysema Support Group
COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...
I have been recommended for night time O2 and a concentrator would be used in lieu of an O2 tank. From what I read, it seems they both serve the same purpose.
I also understand that as a "pink puffer" the SOB is not so much due to lack of O2 but the inability to rid the CO2, however a recent night test revealed my O2 drops for over 20 min.
My last PFT shows FEV1 at 15% and DLCO (rid myself of CO2) at 22%
I am not sure it is something I want to do or what the benefit of the O2 will be except maybe sleep better at night and ease stress on the heart. However, during the day at rest my O2 is fine (pink puffer) but of course upon exertion (walking etc.) it drops below the recommended 88 but will eventually go back up (especially after a good belch or two that I have learned seems to be common for us pink puffers and I was bashfully amused to learn it wasn't just me and amazed that I could even produce such a reaction :) ). Thus, since I am still working (need to), my body is constantly cycling up and down and SOB is a daily fight off and on that I am doubting the night O2 will impact.
Has anyone ever waived using the night time therapy? If not, how significant of a change do you notice? Do you agree the concentrator is equal to a tank?
I haven't been able to "kick the habit" and smoke (albiet greatly less than before - 1/2 pk / day or less and slowing tyring to work my way down). As such I am concerned about the danger invovled. I read the O2 does not explode but will make any fire that starts greatly excellerated.
Since I tend to dread climbing stairs to go to bed, I find that I tend to just fall asleep on the couch (single life)... anyway, that would mean if I do opt for this the concentrator will need to stay downstairs in the living room. I figure as long as I don't light up while using the O2 (if opted), then it should be ok - but just wanted to hear from you all to see if as crazy as this all sounds if anyone else has a similar issue:
1) benefit of night O2?
2) concentrator vs tank?
3) using O2 concentrator in same room as smoking (but not at the same time)
4) no real relief of SOB for pink puffers using O2
PS - just returned to east coast from UTAH (beautiful country out there) and did notice my O2 stayed around 82 and a couple times dropped to low 70's at which time I felt like I was ready to pass out just from standing up. So, I think I now know what the sensation is for lack of O2 and while at home (east coast) it can drop below 88 only a couple times have I had that sensation. Thus, the reason why I am thinking I can prolong or put off the need for the O2 - or am I just kidding myself - not sure how fast this is progressing. Was dx in February/March 2014 and now it is May. I know we are all different but just curious as to how fast things come. Yes there are times my SOB takes hours to recover, but I thought I read somewhere that SOB is not something that requires hospitalization - because not a lot that can be done (to release the CO2 of a pink puffer). Either that or I am just too stubborn to go when it gets really bad.
Thanks,
Annie123
I also understand that as a "pink puffer" the SOB is not so much due to lack of O2 but the inability to rid the CO2, however a recent night test revealed my O2 drops for over 20 min.
My last PFT shows FEV1 at 15% and DLCO (rid myself of CO2) at 22%
I am not sure it is something I want to do or what the benefit of the O2 will be except maybe sleep better at night and ease stress on the heart. However, during the day at rest my O2 is fine (pink puffer) but of course upon exertion (walking etc.) it drops below the recommended 88 but will eventually go back up (especially after a good belch or two that I have learned seems to be common for us pink puffers and I was bashfully amused to learn it wasn't just me and amazed that I could even produce such a reaction :) ). Thus, since I am still working (need to), my body is constantly cycling up and down and SOB is a daily fight off and on that I am doubting the night O2 will impact.
Has anyone ever waived using the night time therapy? If not, how significant of a change do you notice? Do you agree the concentrator is equal to a tank?
I haven't been able to "kick the habit" and smoke (albiet greatly less than before - 1/2 pk / day or less and slowing tyring to work my way down). As such I am concerned about the danger invovled. I read the O2 does not explode but will make any fire that starts greatly excellerated.
Since I tend to dread climbing stairs to go to bed, I find that I tend to just fall asleep on the couch (single life)... anyway, that would mean if I do opt for this the concentrator will need to stay downstairs in the living room. I figure as long as I don't light up while using the O2 (if opted), then it should be ok - but just wanted to hear from you all to see if as crazy as this all sounds if anyone else has a similar issue:
1) benefit of night O2?
2) concentrator vs tank?
3) using O2 concentrator in same room as smoking (but not at the same time)
4) no real relief of SOB for pink puffers using O2
PS - just returned to east coast from UTAH (beautiful country out there) and did notice my O2 stayed around 82 and a couple times dropped to low 70's at which time I felt like I was ready to pass out just from standing up. So, I think I now know what the sensation is for lack of O2 and while at home (east coast) it can drop below 88 only a couple times have I had that sensation. Thus, the reason why I am thinking I can prolong or put off the need for the O2 - or am I just kidding myself - not sure how fast this is progressing. Was dx in February/March 2014 and now it is May. I know we are all different but just curious as to how fast things come. Yes there are times my SOB takes hours to recover, but I thought I read somewhere that SOB is not something that requires hospitalization - because not a lot that can be done (to release the CO2 of a pink puffer). Either that or I am just too stubborn to go when it gets really bad.
Thanks,
Annie123
i'm not sure where you got the 88% recommended number but it has been explained to me that i need to keep my Sp02 above 90% at all time.
less than 90% negatively affects my brain activity & all of my vital organs and kidneys, liver, heart etc have to work harder & will fail sooner if they don't get enough 02. (lack of 02 has pretty much the same effects on killing brain cells, liver & kidneys as severe alcoholism i think---it's how i relate to it anyway)
with your PFT, DLCO & Spo2 numbers that you have written i would think 02 would be necessary both day and night.
At night the body slows down, respiration goes down and Sp02 can drop lower than daytime even with activity.
my 1st 02 sleep study (at home for just 02) showed i drop to 78% in my sleep without 02. so i, personally, chose to wear 02 at night as directed.
so you are on 02 now & you have a tank?
Is it "compressed air" or "liquid 02"?
i don't have liquid available so i don't know the pros & cons of using that. i understand liquid is the lightest & easiest to use, but i don't know.
so to answer your questions;
1) benefit of night O2? = i wake up the next morning. my heart & other organs don't have to work so hard so hopefully will last me longer. no morning headaches. i feel more rested.
2) concentrator vs tank?=
concentrator is= centrally located. flip of swith usage. easier to travel with for lengths of time & staying overnight. doesn't tip over. more efficient & lasts longer for continuous flow. (I) have less fear of explosion. never turned it on to find it has lost the air in it. alarm if electricity goes off or someone (grandkid) turns it off. less to store per month. can use 57' (including canula) of hose to get around whole house without moving it. it never runs out of air (unless electicity loss). it is noisy & it does put out heat. i have a pretty good one that is about as noisy as a window a/c & is nice in the winter next to my chair to warm me up. i also like the humidifier bottle on it to keep my nose & throat from drying up like a desert.
----tanks.= come in many sizes for choice when traveling. can use smaller tanks with pulse & get more time when shopping or driving. don't need electricity to use so great for emergency use. Overnight, big E-tank will last 4 hrs on continuous flow so 2 will get me thru night an 8 hr night. E-tank on pulse lasts a loooong time. heavy & ackward to roll around. when empty is a pain to change & get going again. hauling it room to room is tough going up 1 step to kitchen & bathroom area from the rest of my house. tips over when rolling. all in all a pain for home use. traveling for any legnth of time have to haul so many & set up for exchanges if i run out.
with tank i found that 17' of hose was max legnth of hose (including canula) i could use when using the "pulse" mode, any longer hose would not set off the pulser to send me the blast of air.
3) using O2 concentrator in same room as smoking (but not at the same time)= when i smoked & had 02, i could just flip the switch to turn off, smoke, flip swithch to turn back on.
easier than tanks to me.
4) no real relief of SOB for pink puffers using O2= ??? not sure what you mean by this.
i'm MUCH more afraid of those tanks blowing up than my concentrator!
people with POC l i'm sure will chime in, but you seem to not want a concentrator & that is one, just smaller.
in a nutshell;
i like the concentrator....with the various size tanks for when i can't "plug in" to electricity.
i'm sure the others will tell you all you want to know about the harms of smoking with this disease & give you advice & links of places to quit; i didn't see you ask that though so i just focused on the 02 stuff & "my opinion' on the tank vs. concentrator & night time use.
curious; you seem to be against night time use & concentrator use; any reason why?
Howdy and welcome. IMHO O2 therapy will benefit anyone with emphysema who cannot maintain an SPO2 of 90% on their on, asleep, awake, at rest or active. Anything sustained below 88 causes physical damage.
The only way you can measure the progress of your disease would be to quit smoking and wait 3 months. Smoking contaminates the tests, as the tars and residues are coating your lungs and airways. Smoking also provides a false positive when measuring SPO2, depending on when you had your last cigarette.
Hugs,
Dennis
It seems Jarca very well covered about everything.
You seem to be very resistant to o2, especially at night. That is the time it does the most good, while your body is at rest.
When our o2 drops while sleeping, it does not get an adequate supply to our other organs, we wake up tired, and as we began to move around, those other organs become oxygen hungry and your heart starts working hard to supply them.
If you have O2, it saves your heart all that trauma and extra work, by constantly supplying oxygen that the heart can pump thru to the other parts.
When a person , with lung problems, is active, again the O2 drops as you are moving around, and again the damage to your organs began, and your heart again races to supply oxygen to the organs that your damaged lungs can not produce fast enough.
So this can lead to heart problems, failure, kidney problems, brain problems, (dizzyness, thought, memory ) and a host of other problems because the vital organs need so much oxygen that they are not getting. It may not happen over night, but it can also lead to stroke and death.
So do you have to use oxygen??? That is entirely your decision, no one can MAKE you use it, but if the medical opinion is that you need it, then you might do well to listen to that opinion.
It should not matter what your o2 drops to, if it is below 90, it is in danger of more organ damage, including the heart.
My doctor also said if it get to 88 that is time to get help. I never let it get there, and if it does start dropping, I stop and rest till I get it up again.
I am on oxygen 24/7 , and according to Johns Hopkins, that is the ONLY thing proven to prolong life in COPD people, and puffer has nothing to do with it. That only means if you have emphysema or bronchitis.
I would not use a tank to sleep under, because they run out of air to soon. But my concentrater, never runs out of oxygen as long as I have it plugged in.
When I want to go shopping or where ever, I put a tank in my holder on my rollator, and go. it will last 3-4 hours. I had a portable but I gave it up because it was having problems when i visited my daughter last, and now I just have a regular small concentrator from the supply folks, and keep about 6-8 E tanks in a holder in case I want to go somewhere.
I can not give you advice on smoking and useing oxygen, because in my opinion if you do one, you should not do the other, period.
. Giving up smokes is HARD, but to keep on and then suck up oxygen is just defeating the purpose.
And you could actually burn your lining in your lungs if you do them so close togeather. When I first got on o2, at night only, I smoked, and learned fast about that, even tho I would go outside to smoke.
So I had to decide which one I needed most, and the day I nearly died because my lungs shut down, I learned.
I played the game, sleeping under it at night, waking up feeling great, then start sucking on the cigs again during the day.
So if you continue to smoke, that is your business, but do not be alarmed that your disease will progress faster, and please stay far, far, away from the tanks or concentrator.
No it won't blow up, but just a spark can start that nasal cannula burning . So be careful, and I hope someone here can do more for you.
Hugs
BJ
Pink Puffer vs Blue Bloater ... I was provided this wording by the Pulm Dr. although he indicated not "politcally correct anymore". Pink puffers tend to have emphysema, weight loss, and O2 levels reasonable, but unable to get rid of CO2. Blue Bloater, tend to have chronic bronch., weight gain and very low O2 levels, blue extremites (toes, fingers) and he identified me as a Pink Puffer.
No, I currently do not use any O2. Every time (3 times so far) I go for a check up my Oximeter reading shows 93%. Of course at rest. He never asked me to monitor it, but after reading some things on here thought it wouldn't hurt and may help be a guide as things progress along, not knowing what to expect or when I should be concerned. I initially thought SOB was connected to the O2 level, thus when things would seem severe I would check the O2. Sometimes it ws low, (mid 80's) with a recovery back up within 1/2 hour, but other times it was not low and maintained 93%. Only recently was told by Dr. it was not necessarily related.
I have never been one to let on that I am not well (however I am finding it hard to do with COPD dx.) and I HAVE had to tell a few people, but continue to hide it from others (elderly parents for example and boss for fear of my job). I guess in my attempt to "hide" things wanted to try to figure out what triggered the SOB etc. as to best try to minimize if I could (but like I said, not always easy as this has been hard to figure out)..
I have been to smoking cessation classes and am smoking a lot less than I ever could imagine. So it is in my constant thoughts and figure I just might get there ... haven't given up on this realization yet and know I have to keep moving towards complete elimination.
I think I am getting the 88% from what qualifies for disability. I might be there for at night and upon exertion and maybe even technically do qualify - but no where near retirement and so I am thinking if I can push myself as much as possible I can defer this option. I did get a handicap placard (but use it sparingly). At work I can park relatively close and head straight for my office where I take time to recover from SOB - no more running around doing other things until I recoup from that. I rearranged my patterns to exert myself in brief short moments after plenty of rest etc. I know it is a dreadful "shell game" I play, but feel I need to.
Just curious ... if you are on O2 do you still get SOB?
Thank you again for your replies. As evidence by my writing ... long is ok by me! No need to apologize :)
We learn with this disease to pace our selves. There is a lot of things we use to do that we can not do as well any longer.
Yes, there are times , when I am walking and I go to fast, that I get sob, even with oxygen, but when that happens, I just stop and rest. We know better than to let that happen, but sometimes it does.
I went to a movie with my daughter the other night, and on leaving, she took off at her normal pace, and I tried for a second to keep up, but got a bit sob, so I just slowed down, to what I could comfortably manage, and it was ok. Especially when she turned around and realize I was far behind and then she came back really sorry and sad.
Most of the time, it is me getting to much in a hurry. I am worried all your hiding your condition is doing more harm to your body.
I came in to work one night (before the o2) and was dragging, almost wheezing. Lucklily the charge nurse was there and took my o2 and it was 80!! She made me sit down and taught me how to do pursed lip breathing. Then she put me on o2 a while. This was all before I went to a doctor, I just knew I was SOB all the time, and felt so tired, even when I woke up. I had never heard of pursed lip breathing, or sats, or none of that. I was living in denial I guess.
The sob its self may not require hospitalization honey, but the reason for it and the results from it may definitely require it!! Pace your self, always stop before you become sob, do the purse lip breathing, and please re consider the o2
HUGS
BJ
If I had to summarize a key message, it is better to be "pro active" rather than "re active".
I think I have been more the re active - such as: the Ventolin used after an incident. Where as after identifying those things that almost always cause SOB I should take it in advance, move slower and perhaps the SOB will not flare up. And as for the O2, same thing, take it, move slowly, take meds (and yes quit smoking), and the symptoms will be minimized.
I feel like the first time (more so than the Dr. ever shared) that I have a focus now! Thank you - Thank you one and all!!
if you pass out on the job and suddenly can't work any it can be really tough times, getting tests run, 02 supplied, inhalers, while you try to get help! ---get that stuff now while you can "afford" to, then later if you can't work it's already going & done.
02 at night your job doesn't need to know about. heh heh heh
you could ask your dr to order a simple "at home 02 sleep test"
it's relatively inexpensive, just tests 02 & pulse with a finger monitor that will show what you are doing at night without 02.
and as for monitoring yourself, bah, let the dr give you a 6 minute walk test.
my dr did the "technical test" by having me walk, without 02, up & down her hallway for 6 minutes; took my 02 & it had dropped to below 88%.
then put 02 set at 2LPM on me & had me walk around for minutes again, checked my 02 & it was at above 90%.
hence= no 02 under 88%, with 02 above 90%= disability eligible & 02 needed when active.
most of emphysema patients do fine sitting---its the sleeping & activity that gets us!
ps---also, utah high elevations the higher you go in elevation the less 02 in the air. ;)
i also don't get SOB if i can go at "my pace". so try to pace yourself.
pursed lip breathing=
http://www.youtube.com/watch?v=jFqrWVeskR0
(ty to dennis; this link dennis had posted when i first joined this board :)
If, in fact, you do get a home concentrator, ask the provider if it comes with a bottle fill accessory. Because, if you need the O2 at home, you will need the portable air tanks for when you go traipsing around NJ. You can't take the concentrator with you should you go somewhere. Anywhere for that matter!
The very first reply to you, from Jarca, was spot on, and I fully agree with her statement: "I would think O2 would be necessary both day and night." Most people that I know who are alive, kicking, and still warm, need O2 24/7! Not just us who are lacking the ability to naturally assimilate O2 in our bodies the "normal" way, like we all used to before our lungs became damaged!
Dennis's reply: trust me when I say that Dennis is one of the most logical, and knowledgeable people I know when it comes to COPD and Emphysema! Believe him when he tells you that still smoking will skew all of the lung performance testing so that the results won't be worth the paper they are printed on! So the numbers you reported were probably all false/positives.
Some questions: Who administered the lung function tests and gave you the results? Was the person a Board Certified Pulmonologist, or a guy flying a kite? And if you were told that 88% was okay, you better fire the person who gave you that information! Once again, Jarca was absolutely correct! At 89% you begin starving your heart muscle of its vital O2 needs. So what does the heart do? It dramatically speeds up its beating (pulse rate) to try and get its normal share of life giving O2.If the heart muscle has to continually be in tachycardia mode, it will soon, quite soon, enter into right side heart failure. Then dear lady, you won't have to worry about your false/positive O2 percentages any longer, nor will you need supplemental O2! Then, if your SPO2 percentages remain below 90% for any length of time, like, your brain, and then the other organs begin to starve from the lack of O2! Tis not a pretty picture I'm painting is it! Hopefully, you'll return to planet earth and stop listening to the aliens.
Jarca, I'm proud to have you as a friend! One more thing Annie:
We all hated to meet each other in this type of forum, that now includes you, but we're sure glad you found us and decided that you wanted to join this wild and crazy bunch of the bestest SICKO's in the world. Jim