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RT's Q & A's, con't.


Having Difficulty with PLB

Q. Hello everyone, on the subject of PLB..I used to instruct my patients on the proceedure and now I am having difficulty with PLB..Have been re-instructed by my Pulmo and RT but PLB seems to make me more SOB...It feels like I am having sternal retractions or intercostal retractions...Is there any other disease/disorder that would make it difficult to do PLB...Thank you
Carol in Pa

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A. Are you by chance, trying to force yourself to inhale through your nose? ? ?    Over the years I have found that for many folks, trying to inhale through the nose is counter-productive, because of difficulties like stuffiness and 'air hunger'.   While just about every piece of literature I've reviewed on PLB *emphasizes" inhaling through the nose, I contend it is the most disruptive and unnecessary aspect of the technique.   PLB is an "expiratory" maneuver and as such should have the emphasis ON the EXhalation!   ANY manipulation of the inspiratory phase is meaningless and disruptive to simple and effective use of the technique.  Reasons given for breathing in through the nose are to warm and filter the air.   Superfluous! ! !   The strongest reason offered is to "slow breathing down".   Nonsense! ! !   Breathing is "slowed" by proper exhalation through pursed lips.   To A-D-D-I-T-I-O-N-A-L-L-Y slow it down by forced inhalation through the nose (when that route is difficult) is TOO much and throws the whole advantage and purpose out the window.   My favorite characterization of trying to control BOTH inhalation AND exhalation is the response line to the 'harried worker'; "When you're up to your butt in alligators, its difficult to remember that your primary purpose was to drain the swamp!"   A. K. A. : "If you try to do too much with the unnecessary added to the necessary in PLB, you destroy the benefit of the technique, specifically by trying to do so much.   
 
At the same time, I want to say that while for many, breathing IN through their nose is difficult and counter-productive, I don't want to construe that you "shouldn't" breathe in through your nose.  I'm simply saying that if it is difficult/not comfortable and inhibits your ability to effectively use the technique to your benefit, then don't persist in trying.   You certainly will NOT lose anything by breathing in through your mouth, or mouth and nose.
 
I have harped on this before - - - and probably will again.  But, it is a recurring problem.   So many folks I've seen over the years, who've been taught PLB by the "do everything, even if it's wrong" technique, who have related that PLB was more problematic to do than panting without it, have found dramatic relief and effectiveness, simply by forgetting about controlling INspiration and concentrating on controlling EXpiration.
 
If this ISN'T your problem, then can you describe what you think 'might' be? While I don't say NOT to breathe in through your nose, I DO emphasize that IF it is NOT comfortable and helpful to breathe in through your nose, then DON'T do so.   

Minimum O2 Requirement While Exercising

Q. If I am exercising at home and struggling to keep it at 90, then I take it I should be using 02 to exercise? trying to do 35 minutes, can't keep it above 90 without stopping four times. Going 1.8 mph, I thought as long as I could hang  in there at 90 I wasn't doing any damage. guess I'm looking for a concentrator. My question, is our minimum 02 level for exercising actually higher than that which we get prescribed 02 at?   So it is not okay to be exercising and maintaining a sat level of 88?           Linda W/NY

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A. The answer is NO, not unless you CAN'T do any better than that with all resources utilized.  But doing so WILL cause heart damage over the long run.   So try to get a concentrator.   You will not only improve your oxygenation, but open the door to being able to walk without HAVING to stop AND being able to increase your speed.   1.8 is nice, but you might likely be able to tolerate 3.0, not too long from now, with the right amount of oxygen!   THAT will result in so much more conditioning! Regards,
Mark

Color of Nail Beds

Q. I wonder if anyone can help me or tell me if this is something that I should be concerned about.  I have noticed that the color of my nail beds looks purple most of the time and sometimes goes half way up my finger nails.  Also my fingers and hands are really cold most of the time.  I think the reason that I even noticed is this is the only way I can tell if I need to slow down when exercising.  I am not on O2, nor do I have an oximeter nor can I afford to purchase one, and I pulmo doc will not give me a prescription for one. Thanks for your help! Linda K.

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A. Have you had a walk test with oximetry to determine whether or not you desaturate?   Your pulmonary doctor should be able to do that in his/her office, or send you to the nearest hospital respiratory care department to have one done as an outpatient.
 
Your problem may or may not have to do with oxygen problems.  You do not provide enough 9information to speculate one way or another.   However, there is a condition called: "Raynaud's Phenomenon" or "Raynaud's Disease", wherein the blood vessels in your fingers constrict in response to a variety of stimuli - - - exertion being one of them - - - causing them to grow cold and become discolored - - - most often 'white' and/or'blue'.  It can travel up to the wrist, or stop - - - discretely or not - - - somewhere between the finger tips and the wrist.   It can affect the ears and nose, as well, in some folks.   Only your doctor can determine if that is the problem. 
 
In any case, I urge you to see your doctor and be evaluated.  If you ARE desaturating, you will want to know that and do something about it, sooner than later.   If it is Rayaud's, then that is good information, too.  However, there is nothing you can (or need to) do about it.  It is more an inconvenience, than a problematic pathology. Regards, Mark

Using O2 with a Mouth Breather

Q.  I'm looking for advice, I'm a mouth breather on o2. My problem is that my mouth dries out terribly. During the day I can sip water, Though at night I awaken and I cant even swallow and quite often my cannula has fallen off and my sats are in the low 80's - high 70's. Which sends me into a panic and the mucus (secretions) has dried also, Making it impossible cough them up.

I'm trying to find a way of solving this problem. I've considered a tracheotomy, Though I seem to be prone to infections and that
would just be another invitation to bugs and bacteria. Any thoughts on this would be greatly appreciated, Thank you. Kim.

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A. Explain the problem you are having to your pulmonary doctor.  If he/she can't/won't bother, or doesn't have any ideas to help, have them consult a respiratory therapist.

A trach does not sound like the best idea for you, especially since the same kind of humidification system you would need for the trach is what you probably need to solve your problem WITHOUT the trach.

The delivery of oxygen is not generally harmed by mouth breathing, but the issue of drying the mouth is clearly a problem for you.  The bad news:  to really impact this you are probably going to need an aerosol face mask.  This will mean two major things to you.  You will have to tolerate the mask (to keep the humidity where you need it), and an aerosol unit (which produces a visible fog) is more susceptible to harboring bacteria and infecting you.  You may also end up using more oxygen, depending on your current flow rate and such.

There are other options, but I am not crazy about them.  A "bedside humidifier" like they sell in drug stores and Walmarts does very little to actually raise the humidity in the room, and harbor very bad bugs unless thoroughly cleaned.

I suspect Mark will chime in on this topic.  Just remember that if there is a way to "adapt" devices to meet your needs, a respiratory therapist (especially one with a little gray in their hair) is the person most likely to be able to figure it out.  Nothing against the younger therapists.  It's just that in the older days, we had to BUILD what many now can just take out of a bag.  Larry

Walk Test is Fine but Can't Do Housework

Q. I had the 6 min test at rehab and it was fine about 6 months ago.  Three weeks ago the doctor had me walk his short hallway back and forth 3 times and said I was fine. I'm not fine enough to do housework or exercise. Pat H/MA

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A. Simply being out of shape and in poor control of your breathing can render you unable to do housework, Pat.   Even if your oxygen is good, you can still have prohibitively severe trouble moving air.  
 
Without "numbers" to 'qualify' fine, I'd have been pumping my doctor for more information, were I in your shoes.  You could have been dropping to 85 %.   If he was "happy" with 85 %, then he would call that fine.   Yet, 85 % can make LOTS of people fall to their knees.   I just abhore the "unqualified" responses like that some doctors give their patients.   Besides NOT teaching you what you NEED to know, it strikes me as disrespectful! Regards, Mark

Qualifying for LVRS

Q. My question is why can some who have severe E have lung surgery and others who also have it severely cannot? joyce graber _ca

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A. It is because of the "type" of Emphysema they have and more particularly, that those who CAN have the surgery, have it in very compact and consolidated spaced, where it can easily be cut away.   Others have it more evenly disbursed throughout their lungs.  To remove parts would take away too much good tissue, too.    That's NOT a good thing when you need all the functioning lung you can get. Regards Mark

Firearms and Oxygen

Q. I was wondering if you have any knowledge about the use of fire arms while wearing O2.  I'm using between 5 and 6 liters.  I'm wondering about both indoor and outdoor use. Thanks Jean/Maine

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A. I will say first off, I am giving you "educated guess answers, here.   BUT, I would think that as long as the ammunition is exploding a sufficient distance from your oxygen, no spark will likely get to you and present real risk.  If you are talking about a long arm, through which the exploded munition is launched near your face (rifle/shot gun), I would think the risk is greatly increased.  That would be something I wouldn't want to risk, were I in your shoes.   But, I'd shoot a hand gun with extended arms, while using oxygen and not be fearful.   But, that's "me", too.  This is just my opinion and certainly not a recommendation. Regards, Mark

Oxygen and a Fireplace

Q. I just subscribed to the list and have a question about oxygen use with a gas log fireplace. Is it possible or no? My dr just told me I have to go on oxygen and they are supposed to bring it soon. We love our fireplace and just had gas logs installed because I couldn't stand real wood burning. I'm thinking my logs will have to turned off permanently. I hate this disease! Thanks to anyone who can answer. Today is my day for feeling sorry for myself, tomorrow I will get on with life. Bobby

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A. Keep a safe distance from it and enjoy!   Unless you get close enough that flame or cinders can ignite your tubing, you shouldn't have anything to worry about! Regards, Mark

Using Pulse O2 While Sleeping

Q. Until the past few days I had no idea about this. I use my Helios at night also. Did someone say there is a way to make the large tank continuous flow? May Helios if you remember apparently has not been working right for some time. My awful dreams at night are now gone, maybe because now I am getting oxygen? Wonder why my pulmonary doctor has never ever said anything..He is with a teaching hospital..think I need a new doctor, my primary does more for me then he. Have been looking all over Long Island for the Spirit system...can't tell you haw many home service companies I have called had no clue about the Spirit. Have been also talking to  Claire/Chad, they were going to call my supplier and try and talk him into getting one... Anything I can do for now with Helios system? hugs to all, gj (midnytejewl) NY

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A. While some here may want to read me the riot act for saying this, I caution you not to be too hard on your doctor about not knowing the details of the Helios system.   Being with a teaching system gives him NO edge on this kind of stuff.    Your oxygen supplier is the source that has NO excuse (IMO) for not having stressed this point.   They may have received the "marketing presentation from the manufacturer in which they were told repeatedly that Helios is for EVERYONE.   If they were even told about the night-time use caution, it was probably muted or modified to reduce awareness and/or concern.   MPB has a LOT at stake with their huge investment in the product AND their discontinuance of their alternative/back-up, the Companion 550.   Now with the Escort and Spirit out there - - - technically out-performing the Helios - - - they are pushing even harder to unload their product and capture the market.   So, a LOT of information is not being rendered forthright AND Helios' short-comings are being down-played.   I have challenged MPB reps at every opportunity when they stray from the cold hard truth or gloss over the problems with Helios.   I have also challenged their reps on multiple occasions about their claim for Helios to be suitable, even ideal for greater than 80 % of those who use oxygen.   I just don't see the numbers they do.  AND, they have yet to be able to come up with a satisfactory explanation as to how they have arrived at that conclusion.   They don't reveal how they estimated/ calculated that margin.
 
That said, you CAN have a continuous flow valve attached to your helios base unit.  In doing so, you will not use the Helios unit as the manufacturer intends for it to be used.  Your supplier may not be thrilled about it either, as it will significantly increase your LOX consumption, increasing their need for fill ups, etc.   They may want to give you a concentrator to use for your night time oxygen supply.   That way, the Helios can remain as the manufacturer intends for it to be and your supplier won't see an increase in cost to service your needs
 
The concern is that if you are at particular risk for not always getting your oxygen supply during sleep, then demand oxygen systems are NOT the system to use.   If you and your doctor decide to accept the risk/consequences of repeated drops below an acceptable oxygen level over the course of time, then you can continue using the Helios system, as you are.   Only night time pulse oximetry monitoring can determine how much that happens and what relative risk you bear.   Your doctor can determine if that should be done.
 
In the end, the message is that what ever system one uses, they should be sure they have ALL the information about the system - - - GOOD and BAD - - - so that they make "INFORMED" choices.   Without key pieces of information, your choice is NOT informed.   With so many products on the market, changes to those products and new ones coming out all the time, it is a LOT to cover and keep up with.   That is where your DME/HME comes in.  If they don't know the answers, then - - - IMHO - - - they should NOT be in business! ! ! Best wishes. Mark

Blood Test for Oxygen?

Q. What is the blood test called for checking O2 levels in your blood?  (ie, your blood is too "thick") In Jan, I had a pulmo appointment and he ordered theop levels to be checked. When the nurse in the lab drew my blood, she raised her eyebrows! It was a look that definitely told me something was not quiet right.  I asked her why she made a face and after a lot of begging from me, told me my blood appeared to be a little "thick". I really didn't give it any thought until today. This morning, my pulmo's office called.  My theo levels are low, so he is upping my dosage a little and wants to see me in two weeks to check levels again. WHILE I AM THERE:  I want to ask him for the test for O2 levels in the blood and why. But, don't know what the test is.  I think it is different from ABG, right or wrong? Thanks, Libby

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A. The test for O2 levels is in fact the ABG (arterial blood gas).  To test the actual saturation of hemoglobin, as well as to measure the levels of any other species of hemoglobin requires a co-oximeter, which is also done on an arterial blood sample.  Many new blood gas machines can do both simultaneously on the same sample.

To measure the "thickness" of the blood would be a hemoglobin and hematocrit (an "H & H").  The hematocrit is basically the percent of your blood that is made up of solids such as hemoglobin molecules and platelets, etc.  The higher the hematocrit value, the "thicker" the blood.

Many folks with COPD (and subsequent oxygen delivery problems) develop what is known as "secondary polycythemia" (pronounced polly-sigh-THEME-e-ah).  This is an elevated level of hemoglobin.  It helps because there is more hemoglobin to carry whatever oxygen the lungs are able to provide.  It also has risks because thicker blood is harder to pump, easier to block, harder to get through narrowed or small vessels, etc. Larry

6 Minute Walk Confusion

Q. 1) I always thought the test was to monitor you at rest and then walking to see if an attached Oximeter went to 88% or below.  If we dropped to or below 88% we would qualify for an Rx to get Oxygen for the first time; 2) Now I read that the test is used by folk already on Oxygen .... to determine  during various  phases of activity what the # of litters should be set at. But how does this jell if you don't attach an Oximeter while you are walking. So are their two different tests?  and what in the world does endurance have to do with the process? Also, you fellows in Europe and Scandinavia .....  do your health plans
have a 6 min. walk test?

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Yes, Dave, we ARE talking about M-A-N-Y different test methods being "called" 6MW tests.   As is evident by now, most of them are not, though their users may call them that.   The "official" - - - American Thoracic Society - - - definition describes the 6MW as 'a test of endurance and strength to determine a subject's capability to tolerate exertion and how well they measure up using the scale designated for the test - - - number of feet distance traveled during the 6 minutes of unimpeded walking.'   It doesn't necessarily involve measuring oxygen saturation.  It is done with a free-style walk from point 'A' to point 'B', whether that point be in a circle or not.     Just that the points represent the beginning and end of the "time' periods in relation to how far one has traveled. If saturation is measured, it should be done so as not to impede the subjects effort or progress.   It is done strictly for monitoring purposes, NOT to alter the subject's effort in any way.  
 
While lots of differences have been described by folks who have had various 'versions' of this test, even tholugh they may be "called" 6MW, they do not fit the "comparable" definition of the ATS.  That does not make their information any less valid - - - within the context of the institution performing the test.  I just means that since they are not "the standardized test method" they cannot be reported and compared to results of other institutions who are not following the SAME EXACT test protocol.   That's all it means.
 
The ATS recommends putting folks on the treadmill without the 6-minute time constraint to walk them to determine oxygen requirements and adjust supplemental oxygen levels.   The bottom line is that all who matter understand by what parameters and criteria they are talking about their choice of testing. . . . that all understand the information contained in the results.  . . . that all understand the implications of the results when determining treatment based upon those results. Regards, Mark

Pulmonary Fibrosis Question

Q. A few months ago I was diagnosed with emphysema, by a Pulmonary doctor. He also noted that I have "diffuse lung nodules" and ever since, I have been getting my lungs checked every 3 months. On a previous visit to my doctor, he mentioned that I have inflammation in my lungs...and scarring. I just had to go in and get another lung cat scan done. On the prescription my Pulmonary doctor wrote up for me, so I could get this test taken; he wrote: "check lung nodules for growth; fibrosis; emphysema". I did some research on line, and Pulmonary Fibrosis sounds even more serious than emphysema. I read that the life expectancy of people with this disease is 4-6 years. Is anyone here familiar with this disease? I just turned 49 years old; and feel pretty down about things right now. Any advice would be appreciated. Sincerely, Debbie BTW, I quit smoking over a year ago...

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A. Fortunately, you have stumbled across information that most likely doesn't apply to you.   While there are different kinds of "Pulmonary Fibrosis", what you found sounds more like "Idiopathic" and other similar forms of "active" fibrotic syndromes.  To have fibrotic cysts in your lungs (like nodules) often is normal calcification that has been hastened by smoking.  Active fibrosing processes tend to be more rapidly growing and advancing.  You would see changes of significance over a years time, in m-o-s-t cases.   If you haven't seen that 'til now, then you shouldn't worry about that kind of pulmonary fibrosis.
 
In any case, take your information to your doctor so he can put what it is YOU have into perspective and dispel or affirm your concerns along the way.   Hopefully, you are in for good news, rather than the bad you have found, so far. Regards, Mark

Oxygen Systems While Sleeping

Q. I have read here and there that the demand or pulse systems for O2 are not considered suitable for sleep time.  One place suggested that the doctor had to sign off before it could be used.  What do our members know or have experience with this. Jim  in Michigan

[Comment] I think it's because we breathe so shallowly when we're sleeping that we may not trigger the pulse.  I find it very easy to use the concentrator for continuous flow...I just have it in a different room.  I have a liquid reservoir at home also but it's just backup for filling my portable to get to work or if the power goes out.  I guess I could use it for sleep also but it's in my garage.
Hope that helps! Barbara/CO

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A. You are basically correct, Barbara.   And, you have what many of us consider is the best of all worlds in your oxygen system.    The reason for the recommendation against demand/pulsatile oxygen systems for sleep has to do with more than shallow breathing.   To be more accurate, demand/pulsatile oxygen systems are NOT recommended - - - in fact they are on specific caution - - - for ANYONE who requires more than 2 liters per minute oxygen on continuous flow.
 
Because you cannot direct your inspiratory efforts (for lack of consciousness) during sleep as you can when you're awake, you may not trigger your demand system for long periods of time during sleep.   If that pattern causes you to desaturate significantly, then the purpose of nocturnal oxygen therapy is defeated by using a demand system that can't respond.   So the recommendation is that you use continuous flow during sleep and the demand system when awake. 
 
Those companies who want the patient or doctor to sign off on responsibility for using a demand system do so when they are afraid you'll desaturate significantly sufficient to compromise your wellbeing, health or life.   They have every right to require you to accept all liability for injury to yourself.   If one chooses to ignore warnings and select against the recommendations, though they be inappropriate and/or you insist on having it your way, the oxygen supply company shouldn't be held liable for your self-inflicted injury.   See? Regards, Mark

About the Future

Q. 8 days ago I was diagnosed with severe Em. and 44% lung capacity. I've done lots of research and you have answered many of my questions but I do have one unanswered. I know em is irreversible, My question is... what can I expect in my future. Will it progress until I need oxygen, can it be halted in its tracks and kept in the box. Since I started the Advair my breathing is ok in the cold air. Yesterday I did my usual workout on a treadmill....2 miles in 34 mins without losing my breath [is this good, moderate or slow then an hour on weights and stretching etc. I'm male  66 yrs  and lead a relatively quiet lifestyle with healthy eating...I do feel grateful that I'm not in a worse condition but am a bit baffled as to how I can work out on Treadmill without losing my breath. One thing I do notice is my lack of energy, is this to do with Em. or perhaps something else. I quit smoking four months ago,not cos of breathing but it seemed like a good idea. Then I began to get short of breath as the junk came off my lungs I think. If there is a site which can answer my questions definitively I will be grateful for that info ...or if anyone here can help then thank you so much. Peace, life and breath. Jonathan

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A. Emphysema IS progressive.  But, you may have slowed it down by quitting smoking.  In any case, that's a good thing to have done.   Keep moving - - - especially in the face to hard work to breathe.  If you try to avoid getting winded, you will rapidly decline in strength and function.  Of this point there is NO doubt!   Getting winded and uncomfortable is NOT a "bad" thing.  Quite the opposite.  If you don't target your exercise to "achieve" discomfort and windedness, then you will NOT maintain your strength, let alone get any stronger.  That goes for your "energy" too! Keep up your good nutrition habits, as that will be invaluable to sustain your exercise effort. It sounds like you're doing lots of things correctly, at this point. Regards, Mark

 Newly Diagnosed with Questions

Q. I am new, my name is Peggy, I am trying to post, I hope I am sending this to the right place. August 2003, I was diagnosed with COPD, which includes emphysema. I am not on 02. I have quit smoking since then. am on combivent inhaler, and I go to pulm rehab. I have a couple questions, it looks like I may be able to learn a lot here on this site. Does the emphysema progress if you stop smoking, and take care of yourself, or does it depend on how bad it is?  Also, I have a problem on constant clearing of my throat (and I mean constant) to clear the mucus, my pulm dr is treating me for sinus drainage, which the med he gave me doesn't seem to help, I am thinking this mucus is coming from my lungs would like to know if anyone has an opinion on this. I have been reading alot on here, and have noticed other have fatigue, mine is real bad too, I am hoping rehab will help, my oxygen is ok in rehab, but shouldn't I have my gases checked? ( or something)  excuse me but as I said, I am very new to this situation. Will keep reading and hope to learn, this is a great site. Peggy in Ohio

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A. Lots of folks seem to bear the notion that mucus "accumulates" over a "long" period of time.  Indeed, that which is not expelled from the lungs is reabsorbed in fairly short order.   Folks who cough up extra mucus after ceasing to smoke are doing so in response to mucus 'hypersecretion' that would have occurred while they were smoking, were it not for the suppression of that mechanism that occurred through the action of ingredients in the smoke.   When no longer smoking, those mucus glands have a 'field day' for some period of time until they 'retreat' from abnormal production in the absence of the former irritation of smoking.
 
Peggy's complaint of "constant" clearing of her throat sounds like much more than sinus drainage.   Indeed, I would suspect it is from that same increased mucus production mechanism I just described.  I would expect it to go away, or at least reduce in quantity and severity, in a matter of several months after ceasing to smoke. Regards, Mark

Puzzled

Q.  I am puzzled about something. A few days ago, I was diagnosed with severe Emphysema and 44% lung capacity. Does this mean that the condition will progress [deteriorate] until one day I need to take oxygen and will not be as mobile as I am now. I'm basing this on all the members who are actually on Oxygen and curious as to how they actually arrived at this stage. I surely hope my question doesn't upset anybody. Its simply that I don't understand very much about this disease and would like to be forewarned and thus forearmed. It also makes much more sense to me to ask members directly, as opposed to the medical profession. I wish you all a tranquil weekend. peace and breath Jonathan

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A. Generally, sadly, yes, Emphysema progresses.  However, how FAR and how FAST are both partly up to you. Do you smoke?  If so, STOP.  NOW! Do you exercise?  If not, Start.  With your doctor's guidance, of course. Watch your nutrition.

Avoid second hand smoke, heavy fumes or other lung irritants. It has recently become strongly recommended that all COPD patients be tested for Alpha-one Antitrypsin deficiency, a genetic disorder that can be a contributor to your problems.

Learn all you can about Emphysema and then TAKE CONTROL of your disease.  Being here is a great start. Larry Conway

Advair and Feet Swelling

Q. Has anyone experienced their feet swelling  up while taking Advair 250/50. I stopped a few days ago and went back to Foradil and my swelling went down. Thanks for your replies. Alan/Florida

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A. While steroids, even in the low doses that you get from inhaled sources c-a-n make you retain water, I would be concerned MORE about why a little inhaled steroid caused you to manifest the problem, than with blaming the steroid and stopping it.  You are likely on the borderline of problems in order for that little bit of steroid to make you swell.   Have you had your oxygen levels checked, lately?   Have you had your heart checked lately?   You could be heading into a congestive heart failure problem that became apparent with the swelling when you took the Advair? It would be wise to get answers to these questions before you let it slide by.   You could find yourself in trouble in a hurry if you ignore it and it 'doesn't' go away! Regards, Mark

Helios Problem...maybe??

Q. I went out today for the first time in 6 days.. To be honest I didn't' t think it was that cold...lol  only for  a short ride then home. was nice being free! OK so I had to use ski poles to get to the van.. Wrapped up like mummy.. but geeeee it was fun. I have a question about helios system. I have had one for about a year now. Have had no problem not sure this is even one, for the unit. When I breath in...it does not always pulse.. only if I sort of sniff sort of hard when I breath in. If I sit and don't force the inhale.. It wont pulse. I have been having trouble at night also.. had the man replace a tank, the pressure was only showing 20, thought that was why. Hubby feels its the portable unit.

I did have a thought I had started Singulair last week, it has done wonders for me,  I am no longer huffing and puffing across the room. My levels still go down fast, they do come right up. In fact I have noticed just sitting they can be as high as 96-97 (room air) My nose is not stuffed, have had mucus but at least it getting out. Could it be my nasal passage and bronchial tubes are not as swollen? Any thoughts? Has this happened to anyone else? hugs, gj (midnytejewl) NY

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A. It sounds like your portable unit is not working correctly.  It is not sensitive enough to sense your inspiratory effort.   That is not a good thing, especially since you are likely not getting oxygen during the night as you should.   You should ask for another portable unit and see if the problem persists. 

It could be the length of tubing leading to your cannula, also.  Or it could even be your cannula, especially if you are using as pediatric cannula, or one that is too small to be compatible with you and your system. LOX units like Helios are designed to operate at low pressures.  So the 20 psig that your technician found was likely not abnormal at all.  Check/replace your portable unit and let us know what happens. Regards, Mark

Oximeter Reading

Q. My daughters gave me an oximeter for Christmas,& I have a question. When I am moving around my O2 runs between 90 - 93 ( I am on 2L 24/7 ) I don't think that is bad, but my pulse runs at 100 or more. I see my Pulmo next Thursday will ask him then. Just though I would see what the great people on the list had to say. Buddy NJ,  ps its a Nonin 9500.

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A. I would report the numbers for your SaO2, but focus on the fact that your pulse if over 100.  This could indicate that you would be better served by a little more O2.  In my opinion, your heart is having to work hard to meet your body's needs for oxygen.  Your doc knows you best and may disagree. Larry

Do I Have Emphysema?

Q. Hi my name is Betty I am 46. I was told by an ER Dr  in July  that I have early E my x ray said I have hyperinflation which may reflect COPD. They did a CT scan that showed E. My family Dr did a spirometry. My family Dr said it look normal to him. My FVC  was102%, my FEV1 is 94%, %fev1 was 95%, FEF 25%-75%70% PEF 94% FEV 3 was 104%.  Does it look like I have E?

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A. You do not say whether you are having breathing problems or symptoms.  Whether you are or not impacts how aggressively you need to follow my suggestions.  But I recommend that you follow up with this right away.  If you have E, TODAY is the day to change things to control its progression.

Please remember that I am a respiratory therapist, not a physician, and I cannot make a diagnosis.  With that understood:

Emphysema and COPD are defined by pulmonary function (spirometry) results, not by x-ray.  X-ray can SUGGEST Emphysema, but not definitively diagnosis it.  CT scan is probably better than x-ray in that it may be able to actually show structural changes consistent with Emphysema.  I need to look into this further.

However, your spirometry results do not support the diagnosis of Emphysema.  The FEF 25-75 indicates some possible early small airways changes.  If you are smoking, FOR CERTAIN YOU MUST STOP or the problem will progress further.

There is one other test result that is not available from simple spirometry, the TLC (Total Lung Capacity).  Textbook definition of Obstructive Disease is an increased TLC (greater than 115% of predicted).  Ask your doctor about getting this done.

If you are having breathing difficulties at 46 years, I suggest that you also talk with your doctor about being tested for Alpha-One Antitrypsin (AAT) deficiency, especially if there are other women in your immediate family with breathing problems at an early age.  It is an inherited deficiency which now can be treated.  AAT deficiency makes one much more likely to have lung disease.

Hope this helps and does not confuse. Larry

Exercise Bike Advice

Q. I am considering purchasing an exercise bike for use at home.  Could you advise me they type a COPDer should use.  Is a recumbent advisable?  Or, should I purchase a bicycle with regular seat; or perhaps a combination one with the arm levers.  Any input would be appreciated.  Thanks.

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A. The seat is extremely important for fit, pitch and comfort.  We have a bike here at our clinic that is WONDERFUL for all of the exercise considerations, but the seat is oriented and pitched HORRIBLY!   It cost over $3000.00 and is the most uncomfortable bike I've ever ridden.   The good thing about it is that we never have to worry about folks malingering or hogging that bike! ! !   Anyway, the seat should be oriented over the pedals in such a way as to put the pedals sufficiently in front of your torso.  It should also be tilted back so that your weight rests on the right spot on your 'butt'.  Too far forward or too far back makes you feel like your falling forward or slipping off the back and causes you to work whole groups of muscles unnecessarily in order to keep you balanced while you ride.   A seat with adjustable pitch (tilt) is a good thing.
 
After that, you should consider stability.  Make sure there is enough 'substance' to the bike and that it is stable on its mount so that you can be pretty vigorous and not have the thing rocking every which way.   The base should be such that any movement cause by your weight shifting during riding will not stress any metal and eventually cause it to fail/break..
 
Lastly, be sure that you will use the thing.   For many folks, the happiest two days of owning an exercise bike are the day they buy it and the day it leaves their home.   Good people have great intentions and experience bad results.   Motivation isn't an automatic thing.  AND it isn't a component that you can purchase with the bike!   You must commit to using the thing almost every day - - by force, if necessary (Hee, Hee!)     I've had many patients who got tired of the time commitment of coming to the clinic three days a week.  They got home equipment and stopped coming, only to coming dragging in a few weeks to months later all the poorer - - - monetarily and in physically.   These are good people who succumb to the same problems to which we are all susceptible.   My longest maintenance patient (over 8 years, now) called me yesterday.  She decided last November that she had to try (again!) to make it work at home, since it uses up more than 1/2-day, three days per week to come here and exercise.   She has a treadmill, arm bike, leg bike, weights and a TV and stereo in her "exercise room".  Yet, after two months she's (for the third time, now) found that its too easy to find ANYTHING ELSE to do besides exercise, when she doesn't have the "appointment" and "accountability" to herself and others to come over here.   And, its lonely exercising alone!    So, consider the pitfalls in the process.
 
One last suggestion.  If you find the bike you want, check your local newspaper and see if the same brand/model is for sale by a private owner.   You might save considerable money by buying someone else's former good intentions! Best wishes! Mark

Is Chronic Bronchitis Always Related To COPD?

Q.  Is chronic bronchitis always related to COPD? I was dx with it for years before COPD was ever mentioned and now one younger person at church is on their third bout with it since August. I know several including me that have had bronchitis since we were children. Marsha

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A. We (the medical professional community) use the terms "acute" and "chronic" and "acute on chronic", when we want to distinguish between types of asthma and/or chronic bronchitis.   When we want to be even more accurate (and also 'esoteric'), we use terms like reversible airways disease (= acute asthma) and incompletely reversible airways disease (= chronic asthma).
 
Chronic bronchitis is not only distinguished by the clinical observation of excessive mucus production, but in the absence of excessive mucus production (representing potentially half of those who truly have chronic bronchitis), upon microscopic examination of samples of bronchial tissue, "metaplastic" (tissue growth/character) changes can be identified that definitively distinguish the problem.   Chronic bronchitis IS a kind of COPD and as such, is perfectly appropriate to call "COPD".  The problem is one of educating folks as to the difference in types of problems. Regards, Mark

Is Vicks Harmful?

Q. Per below - please enlighten this poor oxy starved brain. I have used Vicks on my chest with heat during bouts of pneumonia. This has given me much comfort. Is that ok to do? I thought that was far away enough not to inhale into my lungs, but don't want to do anything more to harm them!!! Thanks Mark - this should be beneficial information to all on the list if anyone else is as thick as me and didn't understand. Darcy

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A. Go ahead and continue to use your Vicks in the manner which you describe.  Folks, the two things you should NOT do with Vicks are as follows:
 1)Don't put it inside your nose on the mucus membranes.  You can absorb it and develop lipid pneumonia, given enough exposure.
 2)If you use oxygen, don't use it at all when using the oxygen.   As a petroleum based preparation/salve it is flammable and should not be allowed near oxygen.   Camphor comes in other effective forms that do NOT entail petroleum products.
 Regards, Mark

Hyperinflation Questions

Q. I have a couple of questions for you about hyperinflation, pleeze!  Some days it feels as though there is "not enough room" in my chest for my lungs. (only way I know to describe it).  Kind of like my lungs are pushing against my rib cage.  Could this be hyperinflation?  Is there anything I can do to lessen it?  Seems like an extra neb of Albuterol helps, but I am careful about using a lot of Albuterol, because I have heard it looses it's effectiveness if you use it a lot.  Is that true?  One more question, does everyone with E have hyperinflation? Libby

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A. "Yes", to several of your questions!   Everyone with emphysema has some degree of hyperinflation.   It certainly CAN make you feel like there's too much lung in your chest, because it displaces your ribs and diaphragm, among other contents of the thorax and abdomen, in the process.  
 
The culprit in causing exertional dyspnea is a phenomenon we call "dynamic hyperinflation".   When a person with COPD begins to breathe faster and harder with exertion, they tend to inhale more than they exhale in the process, trapping more and more air.  When they reach the limit of their ability to trap air and still breathe, their "Inspiratory Capacity" is reduced severely, leaving no more room for additional trapping.  This and the breathlessness that accompanies it are what cause folks to stop their activity, often in a panic, or with considerable anxiety.   While the hyperinflation/air trapping is caused by the structural changes of COPD, so there is nothing 'grossly' that one can do to prevent it, "pursed-lip breathing" (PLB) with prolonged exhalation, directly reduce it and its impact on your tolerance of exertion.   That is why PLB is SOOOoooo important to master and use!  
 
Insofar as Albuterol is concerned, we have no data that shows that beta receptors lose their responsiveness to Albuterol.   So there is not a liklihood that Albuterol "loses" its effectiveness.   What we DO see in the case of overuse of Albuterol is that all of the beta-receptor sites within the airways can become saturated with the drug, such that they can hold no more.   Additional Albuterol either goes to alternate beta sites (in the gastrointestinal and/or peripheral nervous systems, heart and elsewhere) or it goes nowhere where it can act.  So, any breathlessness that is not relieved under such conditions is not because the drug has lost its effectiveness, but rather that there are no more sites for it to bind with and produce effect, since it is at maximum effect with the saturated sites, already.    Under such conditions, breathlessness that persists cannot be relieved by drugs alone, but must be relieved by controlled breathing maneuvers and relaxation. Regards, Mark

Hyperinflation Confusion

Q. I'm still confused about hyperinflation.  Does this mean that during exercise one can experience this breathlessness even though the oximeter is reading in the mid-90's? If this is the case, should one continue to exercise using PLB? and why do some people increase their oxygen while they exercise?

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A. YES, dynamic hyperinflation IS the cause of the breathlessness you feel during exercise, despite the fact that your saturation may even be 'normal' (> 94 %).  YES!  You should continue to exercise and use pursed-lip breathing and prolonged exhalation time.
 
IF your saturation is less than 95 % you "m-a-y' find some benefit/relief of windedness by turning up your oxygen.   While heretofore, folks with oxygen levels above 90 % but less than 95 % were considered not to need - - - or benefit - - - from additional supplemental oxygen, new data strongly suggests that 'that' represents a misconception.   Some of the rehab research gurus are NOW asserting that anyone who has less than normal oxygen who suffers breathlessness during exercise should be given a trial on supplemental/increased oxygen.   If benefit is appreciated, then they should continue to use it during future exercise.

Lung Transplant Information?

Q. My Doctor told me today he is going to put me on a lung transplant list. This really surprised me, because I thought you had to be pretty close to death before they did this.  Can anyone tell me where I can find information about lung transplants and the life expectancy afterward?   Thank You, Gail

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A. All you need to do is type "lung transplant", maybe even add "information" to narrow the search, in you "Google" browser and you should come up with literally thousands of links to information.  You can find information by going to the websites of The Natl. Jewish Center for Respiratory and Immunological Diseases ("Lung Line", I think is what they call it),  Duke University Medical Center, Barnes-Jewish Medical Center, just to name a few.   In any case, you should have no difficulty finding more information that you can digest, with relatively little effort.    While we have folks here on the list who can give you plenty of information, there are also groups like "Second Wind", a transplant listserve, where you can exchange with folks who have gone through it, are waiting for transplant and others who are their caregivers, for yet more information and perspective.
 
As to your surprise, we DO NOT want to wait until a person is on 'death's doorstep' to recommend they 'e-n-t-e-r' the transplant process.  Indeed, when it becomes imminent that transplant will be necessary 'somewhere' down the line, we try to make the recommendation - - - if nothing else, so the individual has the opportunity to give the prospect full and due consideration, before committing to it.   If we can get someone into the loop five years from that "death's doorstep point, we try to do that.   Less than three years expected survival is cutting it close, as 'probably' the best time to transplant is when the individual is imminently not likely to survive another year, yet is still healthy and viable enough to be expected to do well at transplant.   That 'point in time' is a tough call, to be sure.   But, it has a lot to do with preservation of 'other' organ function to make conditions suitable for transplant success.   Heart function is of utmost import, for instance.
 
Having gone through the process with my daughter, I can say that there are plenty of experts and great support (pretty much w-h-e-r-e e-v-e-r you have it done) to help you figure things out as your go through the process.  It seems a scary thing now, knowing little to nothing about it.   But, as you gather more information, the scariness will surely decrease - - - or at least be re-directed towards those thing that remain scary until you wake up with your new lungs.
 
I'm sure you will also get a lot of first-hand information from folks here on the list who have gone through the process.  Best wishes to you for success in this endeavor, if you choose to go through it. Regards, Mark

How Can I Help My Dad?

Q. My Dad was diagnosed with COPD in August. I just came from a visit with him and I am feeling pretty helpless. He seems to be SOB more often and he's still smoking. He says he doesn't want to make himself miserable, that he feels bad when he doesn't smoke. He thinks that he is waking up SOB due to anxiety rather than emphysema. From the emails I've read from this group, waking up SOB is part of COPD but he feels since he hasn't done anything to exert himself first thing in the morning it is an anxiety attack. The problem is nobody has told him what is going to happen during the progression of this disease. I'm scared that once he realizes what he's going to have to deal with he is going to become very depressed. It is just not fair!  He's finally happy and at peace with his life. He's had a rough time of it for the past 5 years. He's overcome heart bypass & valve replacement surgery with major complications among other things. Why did this have to happen now? What I'm wondering is how do I help him to become aware of how important it is to stop smoking?  And do I give him the information his doctors haven't? He told his doctor that he cut back on his smoking and his dr. said okay. He also has not referred him to a specialist. I know he has a Combivent inhaler. I'm not sure if he's taking anything else. Any advice would be helpful. Thanks, Kathy

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A. Kathy's dad needs to quit smoking - - - AND, we ALL know how easier said than done, THAT can be!    As it is, he's convinced himself that the smoking is making him feel ""anxiety", not bad lungs and questionably adequate heart function.   His is a difficult uphill battle.  With the heart trouble and those major surgeries, with his return to smoking, he has not yet indicated a willingness to change the habits that drove him to that point in the first place, nor acknowledge the destructiveness of them.   Someone has suggested he get a doctor that will tell him the truth and not hide the facts from him.  Kathy seems to know the truth well and not be able to put it to her dad so he'll accept it, despite seeing it clearly herself.    Even a truth-telling doctor won't likely change his denial.
 
That's the big problem, at this point.  Unfortunately, unless that can be overcome, no doctor is going to make a difference, truth told or not.   I don't know how to interpret Kathy's statement about him being "at peace with his life."   It would seem to me that with the symptoms she describes, he is anything but at peace.  And, he is denying his disease difficulties.   This is a tough predicament.  It will probably get a lot tougher.
 
Prayer is probably the most effective support we can offer at this point.   That and to be here as a sounding board for Kathy as the future becomes the past and the difficulties mount.    Kathy, we're here for you.  We'll try to do what we can.   But, I'm afraid unless your dad comes to the reality of his situation, the road ahead is likely to become a rough one. Best wishes! Mark

O2 Levels That Rarely Change

Q. Recently acquired an oximeter and my wifes O2 level rarely changes. Even during a recent stress test (not very long- 2 min.) it never went below 93. Her lung capacity is 35%. I know she is out of shape so finally got her to accept re-hah. Start Tues. Can someone explain this, as most of what I am reading has the O2 level dropping with any exercise/effort at all. She will get SOB going into the bathroom and back. She will be huffing & puffing yet the level doesn't drop. Bill

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A. There are a few different possible reasons to explain why you observe what you do with the oximeter.   When measuring finger oximetry, the delay from changes in the blood in the lungs and the travel time for that blood to reach the finger can be as much as 2 minutes, or more.   Some people just don't get good finger readins, though, that is failry rare.   If your wife's stress test was walking and she only managed to go two minutes, she might not have reached the point where her saturation monitor would reflect changes that might have been in progress. 
 
Then there is the possibility that she simply doesn't desaturate with exercise.   Though rare, I have seen folks who breathe so differently at rest - - - and significantly less volume and rate, per minute, that when they get up and get moving, the increase in breathing rate and volume moved-per-minute increase so much that their saturation stays stable and adequate.
 
Then there is the possibility that she doesn't have as much problem exchanging gas as she does with simply being out of shape.   Some folks are so out of shape that they huff and puff from the gitgo, when they get to moving around.   They are very uncomfortable AND they look horribly uncomfortable, from our point of view, but it is simply the net result of their being out of shape.   They produce a lot of carbon dioxide during exertion and they must work that much harder to get rid of it.
 
So, with simply the information you read AND the information you are able to relate, it is virtually impossible to even 'speculate' with confidence, as to the cause of your observations.  It doesn't mean that she is not experiencing changes of importance.   It doesn't mean that she's alright, either.  It just means that we can't tell anything, with the information you've been able to provide, so far. Regards, Mark 

What Is Xopenex?

Q. What is Xopenex?   Yesterday I went to the doctor (regular appointment but had not been feeling quite right for 3 or 4 days, turned out I had bronchitis), I had some questions about using the nebulizer - after he finished explaining he said that we might want to try another drug in the nebulizer - it didn't have the same side effects as albuterol - the name sound "kind of" like Xopenex - I didn't pay close attention as I had just gotten a 90 day supply of the albuterol combination the day before from our insurance company's mail order. Peggy in Alabama

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A. Xopenex is "Levalbuterol".  Albuterol, that you now take has both Levoalbuterol and Dextro-albuterol in it, making it what is called a "racemic" mixture.  Only the "Levo-" form is active to open up your airways.  The "Dextro-" form is responsible for the side effects many folks experience with Albuterol - - - pounding heart, shakiness, etc.   Xopenex has been formulated to remove the "Dextro-" form of the drug, so that only the active form is in the solution AND there are no components to cause the heart-related symptoms, or shakiness (despite the recent postings of a member who may possibly be a very unusual exception).
 
Xopenex is quite expensive.  I'm not sure if Medicare is yet covering it anywhere, so you would want to check with your provider before ordering it.   If the Albuterol shakes and other side effects don't bother you, there is no good reason to change, as the difference in effect, with regard to bronchodilation has not been found to be significant enough to warrant insistant change.
Regards, Mark

Side Effects of Inhaled Steroids

Q. Its been my observation just with myself and would like to know if anyone else has experienced this. I have been using Advair 250/50 since last Jan. until about 2 weeks ago when the VA. Dr. ask that I do with out it as much as I can. Well I have not had a hit off the stuff for 2 weeks now and I find that I get around about as good without it. The main thing I have noticed that in the past while on Advair minor sores, cuts and scratches would sometimes take months to heal. Have had some that seem to never go away. However in the last 2 weeks I have noticed that these things heal up a lot faster and some have even gone away all together. A lot of these places seemed to appear as a small pimple or a little bump that almost never went away. Now it seems that they have quit too. Is this a common side effect of Advair?...... Rusty

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A. It is fairly common, Rusty.  With your dermatological penchant for increased sensitivity and skin reactions, it might be more pronounced than for others. The take away from your experience is one that all can consider:   If you DON'T need the steroid, then you should try to avoid using it.   If you use it and it produces a noticeable improvement in your breathing, then you probably should continue using it.  If you and/or your doctor stop it and you notice you breathe worse, you should probably resume it.  If you and/or your doctor stop it and you notice no worsening of your breathing, then you probably should refrain from using it.   If you are trying to get off oral steroids and inhaling them does the job, more power to you!   As you can see, this is not rocket science, here.   But it c-a-n be a scary prospect for some.  
 
Using steroid treatment is basically a matter of balancing the positives against the negatives - - - benefit against side effects - - - and attempting to achieve a result that is more positive than negative.  That is easier said than done, to be sure!    This is also why you must take an active role in your own care; be a 'partner' with your doctor! Regards, Mark

Cleaning Nebulizers

Q. Did Vinegar go away for use to clean a nebulizer? If so, what do we use to clean our nebulizers?

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A. This discussion may be in the archives, as we had much discussion about this some time ago, but the answer to your question is "yes", vinegar as a recommendation in nebulizer cleaning has been discontinued - - - and some time ago, at that. 
 
NOW, that doesn't mean that LOTS of folks aren't s-t-i-l-l recommending it! ! !   The bottom line is that current recommendations are to use dish soap and water with a small amount of bleach - - - or wash components in the dishwasher.   If you use bleach in the process, then all you need to do is rinse and air dry.   If you DON'T use bleach, then you need to use the 1-part vinegar to 3-parts water solution and soak your equipment in it for at least 30 minutes before final rinse and air dry.  
 
Vinegar specifically kills pseudomonas aeruginosa bacteria - - - commonly found in contaminated respiratory equipment and a source of pneumonia infections.   BUT, other microbes, like staphylococcus A. and H-influenza and streptococcus P. are not adequately thwarted.   So, unless the soap and water and rinse, plus the friction of rubbing with the hands or cloth get rid of these microbes, they can remain and cause problems.
 
A few more words - - - N-E-V-E-R "wipe dry" your nebulizer parts ! ! !   A towel, even paper towel, can transfer microbes to the device during drying.  Always air dry.  you may place a ;paper towel over the components to keep them free of floating contaminants that might otherwise be able to fall on and stick to them.
 
Lastly, for the most part, if you are diligent about cleaning your nebulizer - - - even if only to rinse well and splash/slosh through the various solutions, rinse well again, you should NEVER experience any infections caused by contaminants!   The ideal measures amount to just that - - - the IDEAL.  If you resonably approximate them, even if at somewhat greater intervals AND don't store your nebulizer where it can easily be inoculated/contaminated with pathogens, then you will achieve effective cleanliness and handling of your nebulizer equipment. Regards, Mark  

Testing for Blood Clots in the Lungs

Q.  Has anyone had or know someone who has had a test to detect blood clots on the lungs.  If so, was it done by cat scan or ultra sound?  Any info will be appreciated. Also, has anyone ever heard of a condenser using a sort of remote control type thing to increase o2 flow without actually being right in the room where condenser is?

* * *

A. A test for blood clots in your lungs could not be done using ultrasound.  The simplest would be a "high-resolution CT scan.   They can also add "enhanced contrast" to it and locate areas of no perfusin (flow) that might be caused by clots blocking the vessels.   Another one they can do is called a ventilation perfusion scan.  It consists of inhaling radioactive particles then taking x-ray pictures to determine where they went and how they were distributed within the lungs.  The other part of it is essentially an arteriogram, in that they inject dye into your blood so that it traces the pulmonary path of blood flow in other x-rays that are taken.  They look for areas that should have blood circulating through them and note those that have none.  That is indicative of blood clots.
 
I'm not aware of a "concentrator", the flow of which can be changed using a remote control.  Many have talked about how nice such a device would be.  But, I have not seen one on the market, yet.
 
That tubing about which you speak is made/sold by the Chad company.  They use it on some of their older "Oxylite" systems.  That tubing should work with "any" system that uses standard-connection small bore tubing.  As your oxygen supplier about it. 
Regards, Mark

Asthma with Lung Transplant

Q. I am wondering if anyone can answer a question for me, or have ever seen this addressed anywhere.  A lady I know has asthma, she doesn't admit to having anything else.  She has smoked all her life and still is.  She has been on steroids for years.  She says that the doctor told her she needs a lung transplant.  He said LVRS would do no good because her lungs are too far gone.  The question is, if you have asthma and get new lungs, do you still have asthma?  If yes then won't the lungs deteriorate as quickly as before?  Her sister is an employee of mine and we started talking about this and now I won't quit till I find the answer. Sincerely, Gail Hart

* * *

A. Look no further for your answer. While I think that some of the information that has been related to you is erroneous, or incomplete, the basic answer to your question is "No, the asthma would not expectedly/automatically become a problem with transplanted lungs."    One's lungs have to be "pretty far gone" to be beyond the help of LVRS **IF** they have the right kind of emphysema for benefit to be expected.   ALSO, as long as the lady is smoking, NOONE will even entertain the idea of "w-a-s-t-i-n-g" a pair of lungs on her for transplant.   EVERY program that I know about is ADAMANT that prospective candidate be quit for no less than three months, but usually 6 to 12 months before they will approve them for transplant.  The long interval is to "suggest" with reasonable confidence that the transplanted individual will NOT return to smoking with their new lungs.
 
Asthma C-A-N develop after transplant in response to changes in the body, or reaction to post-transplant medications and sensitivies that develop.   But, it is not a frequently seen complication, that I am aware. Regards, Mark

PFT's: How Often?

Q. How often should we have our pulmonary function tests taken. I am still under the care of a GP doc and I am not always sure he knows enough about these problems.  I have learned a lot just from this web site. Thank you for your answers Janice in Oregon

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A. There is *NO* concrete recommendation on how often one should have "serial" PFT's.   Generally, the recommendation is; ". . . as often as the individual's clinical disease pattern warrants."   That means that if you are stable and not having exacerbations and are on minimal therapeutic intervention, you can go two to five years, or more, without having a PFT.   If you have an exacerbation that is reasonably severe so as to cause changes in your 'subsequent' steady-state condition, then a follow-up after one to three months is reasonable and prudent - - - even one at the time of acute illness for comparison to recovery changes.   If you are unstable and are requiring a number of changes in your treatment regimen - - - and especially, if you are on continuous oxygen therapy - - - then the frequency should be more often - - - BUT - - - there is s-t-i-l-l no strongly recommended interval.
 
The reason why there are no sequentialized recommendations with "hard numbers" is because folks vary sop much, making blanket recommendations too vague or too specific, but rarely encompassing of the majority.  Another consideration is that while, as Rusty pointed out, PFT's certainly quantify your disease at the moment of testing, there is still a lot of room for the argument; "So What? !"   If you do not have asthma that is problematic despite best clinically-suggested intervention, then the expectation is certainly "little to no change from last test".   That kind of information can arguably be derived from clinical examination "w-i-t-h-o-u-t" PFT's, a LOT of the time!    Even when serial PFT's - - - even over the space of several years - - - show the steady and expected decline, the argument arises as to why do them when their results will not cause changes in therapeutic intervention.   This comes down to an issue of utilization of resources and cost of care.   There is always going to be the battle of; "why spend the money to do the test if it will expectedly NOT lead to changes in current therapy".   I'm certainly NOT justifying or disputing these arguments, mind you, but simply presenting them as being there.
 
Just because your doctor doesn't do regular testing, does NOT make him/her incompetent or negligent - - - AS LONG AS what they DO do results in treatment the holds you stable or betters your life, if not retarding the alterable progression of your disease.  That goes for pulmonary specialists as well as general practitioners of various kinds and titles who may be caring for you.    After working with very BAD pulmonologists and very GOOD internists, general practitioners, and family practice/geriatrists, I cannot support a cursory recommendation that "ALL patients with pulmonary disease should be cared for by pulmonologists."   While that certainly may prevail as the "preference", it is not a "slam dunk", by any means. Regards, Mark

Difference Between Pulmonary Fibrosis and Sarcoidosis

Q. What is the difference between 'pulmonary fibrosis' and  (lung) fibrosis caused by Sarcoidosis?  For all intents and purposes, the fibrosis  is 'dried leather' stuff - right?  My fibrosis and the granulomas are  through-out both lungs.  How does the presence of fibrosis AND the emphysema change our pulmonary work out?   How does my emphysema (between moderate & worse) factor in for exercising? THANKS! Sharon O'WA

* * *

A. By definition, fibrosis is fibrosis is fibrosis . . . . . . .     Any differences of which we speak have to be causal and location/type of fibrosis.  Idiopathic Pulmonary Fibrosis (IPF) is a very specific process that is generalized throughout the lung tissue, affecting most profoundly those layers that make up the 'alveolar-capillary membrane'.   They become increasingly impervious to oxygen molecules, resulting in the profound hypoxia we observe.   It is characteristically a rapidly progressing process the cause of which is not known.   There are several interstitial (within, or "in between" the tissues) fibrosing diseases, of which Sarcoidosis is one.  There, scaring from inflammation is one cause of fibrosis.  Another cause is secondary to deposits of material like collagen, or other cellular debris.  These occupy space, thicken the tissue layers and present a barrier to the passage of oxygen from the alveoli into the blood.

When you combine significant fibrosis with COPD, the result is both difficulty in moving air AND worse-than-usual/expected oxygen levels.  So, the impact on your ability to exercise is greater difficulties to overcome with work to breathe and anxiety caused by the discomfort.  Also, depending upon how profoundly your oxygenation is affected will determine how difficult a time you will have getting enough oxygen into your lungs to meet your oxygen needs, in relation to your oxygenation defect.   Folks with sufficiently profound oxygenation defects will find that most home and conventional oxygen delivery systems will not be able to overcome their difficulties, and therefore will find it difficult, if not impossible to achieve adequate oxygen saturations, let alone sustain them, for a vigorous and/or prolonged workout.   For those who CAN get enough oxygenation to keep in an acceptable range, there should be no difference in approach to workout activities or intensity compared to those without fibrosis issues. Regards, Mark

Primatine Mist

Q. A member of my support group shared that her doctor got really upset with her for using Primatine Mist (OTC inhaler).  She said all he would say was: "It'll tear your insides up".  That led all of us to wonder why.  I'm figuring Mark, Larry or Lois will know a reason, but anyone is free to chime in thoughts, info or insights.  As I said, our little group was left somewhat bewildered . thanks in advance. Judy

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A. We (the AARC and other organizations of pulmonary medicine professionals) have made attempts in the past to have Primatene Mist removed from over-the-counter (OTC) availability.   These efforts have met with no success.   Our collective belief is that it is one of the remaining few over-the-counter medications that can truly cause serious harm to the user.  In an extreme, but not unlikely scenario, it could cause death.
 
The active ingrediant in Primatene is "adrenalin", also called "racemic epinephrine".   It is a powerful bronchodilator AND heart stimulant.  We used it commonly, years ago as one of only two mainstream bronchodilator medications, available at the time.   It not only invokes bronchial tube dilation, but it directly reduces swelling AND directly stimulates the heart muscle to beat faster (chronotropic action) and stronger, more forcefully (contractile action).   Adrenalin is also - - - if you recall - - - the medicine you are given to counteract the life-threatening symptoms of an anaphylactic or similarly serious allergic reaction.   It is a powerful medication that shouldn't be available for casual use by untrained or unsuspecting lay-people, in our professional opinion.  Overuse/too frequent use can lead to cardiac arrythmias, cardiac arrest, stroke and other possibilities.   Because it doesn't happen with any consequential frequency AND because use of Primatene has significantly decreased over the years, the FDA has not been moved to remove it from the OTC market.
 
So while to say it will "tear up your insides" is a lousy way to explain why you shouldn't use it, there IS good reason not to!    If you DO use it, be careful! ! ! Read the instructions AND side and secondary effects so you know what you're up against/getting into. Regards, Mark

Does Your Body Get Used to Low Oxygen?

Q. If a pulse ox reading of 97-95 is normal on room air, how about 90 to 93 on room air, sitting at the computer, resting, etc.?  Is this an indication of the need for supplemental 02 or is the body simply adjusted to living with a lower amount of 02?

Oh days when I feel fairly well, and can get things done (inside my home) and even a little slow walking outside on sidewalk, fairly level ground, the oximeter will drop to 88 or so, but upon resting for a short while will return to the 90 to 93 reading.  Plus rate is usually about 100+ all of the time. Comments would be appreciated. Charlotte

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A. If your oxygen saturation is running 90 - 93 % "at rest" and dropping into the 80's with minimal exertion, then you DO need supplemental oxygen - - - and soon, IMHO.   Your body does NOT "get used" to low oxygen levels.   It just tolerates it as long as it can while detrimental changes are in process.   Then one day you "fall off the wall", like Humpty-Dumpty!   There you'll be, swollen ankles, breathless while at rest with congestive heart failure (CHF) and wondering why it happened to you so "suddenly".   Now some might tell you to go as long as you can without it.  My experience, theoretical knowledge and wisdom point to intervention sooner than later.   The choice, however IS yours to make.  With your pulse rate greater than 100 all the time, my bet is that you have already developed clinically consequential pulmonary hypertension.   Heck, I'll bet if you DO start oxygen with sleep and exertion, you might be surprised at how much difficulty you 'were' putting up with before starting oxygen therapy.   Let us know what you decide to do AND, more importantly, how you fare, regardless of what you choose to do.
Best Regards, Mark

Exercise and O2 Saturation

Q. A few days ago Polly Taylor stated that "we know that having our sats drop even to the low 90s endangers important organs and functions." Mark just wrote that we may accept 92 - 96% as clinically normal/acceptable even though it deviates from the textbook defintion. I'm getting confused about whether or not I am endangering important organs and functions by continuing my exercise when I can only maintain a 91 - 93% saturation level at 5 or 6 lpm.  To walk slower or for a shorter period of time does not push me into an aerobic zone.  Thanks for your educated thoughts on this.  john s in OR

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A. The conditions under which 92 % saturation would be harmful are few and far between.   Though I can't speak for Polly, if she meant that a saturation of 90, even 91 could be harmful to vital organs, I would have to argue, except in the long run "over time" AND with circumstances that translate that 90 - 91 % into compounded hardship for one's cardiopulmonary system, as a whole.   Otherwise, they are tolerable without necessarily hastening deterioration, under most circumstances.
 
For those who use the maximum a reasonable and manageable system will produce AND still drop into the low 90's to upper 80's, there is a point at which you have to settle for the best you can get, or expect to get.   That's where you may be, as you speak.   HOWEVER, remember, periodic drops are not the same as continuously decreased" ! ! !   And when its the best you can do, you have to do what you have to do!!! Regards, Mark

Exercising without RT

Q. If a pulmonary patient doesn't have properly trained pulmonary folks to see, and must work out on their own - when - during exercise - is the right time to monitor pulse oximetry to detect problematic changes?  How best can a lunger exercise for full benefit?  Which machines do you recommend for us?  The arm thing?  Are UB work-outs emphasized over walking on a TM?  ALL the local PT trainers, (as far as I know) are trained for Cardiac, nothing Pulmonary.

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A. Good questions, Sharon! I measure oxygen continuously during walking - - - the most demanding of the exercises I put my patients through.  I find that even those who desaturate fairly severely on the treadmill don't desaturate by even half as bad when riding a leg bike--the second most demanding of the "core" exercise routine I put my patients through.   If you must do spot checks, they should be DURING walking (or other exercises) and at least 2 minutes into it, but better if it's at four or five minutes into the exercise.   Before two minutes or more, you won't see the downward trend, NOR the "bottom level", which can take up to 5 - 5-1/2 minutes to reach.   Waiting to check oximetry until after the person is off the treadmill is treacherous, as most folks begin to return toward baseline--and often FAST-- once they stop walking.
 
I put my patients through 15 to 20 minutes of leg ergometry, followed by at least five minutes rest.  Next they do 15 to 20 minutes of upper body ergometry (biking) MOSTLY in reverse direction at a steady rate of 60 RPM and with variable tension.   We feel that the accessory muscles helped by forward cycling are already disproportionately conditioned to those that are worked when a reverse direction is cycled.  (Reverse gets the muscles supporting the back, shoulder blades and spine.)   We do not pursue upper body ergometry (UBE) for respiratory muscle conditioning nearly as much as for strengthening and conditioning of arms and back muscles - - - so you can hold that hair dryer.   The arm muscles that are worked by UBE are NOT respiratory accessory muscles, nor do they help (and are not supposed to help) in breathing.
 
Leg ergometry serves as a warm-up when it is used as we use it here.   For those who use it for aerobic conditioning, the load and speed is different and intent is for maximum duration.   I look at walking as the meat in the three course meal.  The UBE and LBE are the side dishes.   They are no less important to a balanced workout (meal) than the meat, but muyst be of less emphasis and duration. Regards, Mark

ABG vs Pulse Ox

Q. I had an ABG on room air and was somewhat disturbed when I saw the results. I had my pulse ox on my right finger when I sat down and on room air my 02 SAT was 92-93 by the pulse ox.  I kept it on and glanced at it while the blood was drawn. The result on the ABG for my 02 Sat was 84. That is a difference of at least 8 points.  Is it possible that erroneous readings can be made in this lab test?   I really think my pulse ox is accurate as I check it each time I am at the pulmo or at BB. It did take the nurse quite a while after hitting the artery to get the vial to draw.  In fact long enough that I thought perhaps she might have to do another stick.    Blood PH was 7.40 in range, as were HC03 of 22, and pCO2 of 36.  My p02 was 46 extremely low.

I use my pulse 0x a lot and if my saturation is at 97-95 at rest I frequently take my oxygen.   This might be while driving or otherwise sitting.   However, if a difference of 8 points is realistic, I question I should be doing this.  I do know that those tests are time sensitive and wonder if the long draw could have made a difference.

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A. You are correct to question the results.   I am curious as to why a "nurse" is drawing your blood gas and not a respiratory therapist?   . . . small hospital/clinic?    While the test can be thought of as "time sensitive" it is much more a matter of time that the blood is exposed to conditions that could significantly alter the values.  BUT, in the case of the alterations of which I speak, your blood gas could not have been affected by it, since the changes would make the (Saturation) SaO2 rise, the pH rise and the pCO2 fall.   Your pH and pCO2 are within normal range.   The oxygen is low, indeed.   It is possible, even likely, that the nurse obtained blood from both a vein AND an artery.  In that case, the single value most affected would be the pO2, while there could be little to no significant affect/change in the pH and pCO2.   Another point that supports your suspicion of a bad test/sample is that the pulse oximeter was SOOOooo much higher than the actual results.   While there are specific and very conditional examples of situations where the "actual" SaO2 can be lower than that measured, they are not common, indeed, rarely seen.   If the blood did not fill the syringe reasonable quickly and had to be aspirated, instead of flowing under the pressure of your system, that would add yet another suspicion to the question of venous "admixture".    From what site did she draw the sample - - - in other words - - - where did she stick you? I recommend you go back and question that test and ask for a repeat.  Regards, Mark

Quick Relief of Dyspnea

Q. I found "Abdominal Breathing" (or as I like to refer to it as "belly breathing") MUCH MUCH easier to learn while standing up or sitting but NOT while lying down because when I'm up that's when I have to do it, i.e., when I'm awake AND (this is important) keep the exhale QUIET so that folks you are around can stand having you around.  Looking like you're kissing someone is cool only when you're actually doin' it otherwise you look really weird and nice people you see (like in the market or the mall) actually come up to you and ask 1) "excuse me sir is everything OK?", 2) "you feelin' alright?", 3) "ya look like ya need some help" 4) "ya sure yer OK ?" and assorted other concerned expressions from really nice people (there actually are a whole bunch of them out there to my great relief and extreme surprise).

I mean ....... I live in LA where everybody's bumping into each other with all their ..... What Ever's. Ken

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A. You're not alone in your observation.   GOLD pretty well debunked the "laying down, place hands, weights etc on the stomach/abdomen and breathing to lift it", though you'll still find a ton of literature (like the sites Frank posted - no criticism to Frank, please understand) instructing in its use.  What several studies found was that folks could move their abdomens and STILL breathe with upper chest accessory muscles and with NO MORE abdominal help than before trying the technique!   (ALL wrong!)   Besides, for most folks who truly have to use some kind of exercise/maneuver like this to transfer work of breathing to the abdomen, laying down is about the worst position for them.  
 
But, this is another one of those techniques that was dreamed up back in the 60's and has been published so much, without ever obtaining a shred empiric evidence of effectiveness, that it is blindly accepted as gospel, still today.  Because GOLD has discredited it means nothing in its going away.  That will take y-e-a-r-s!  Meanwhile, I discourage folks from laying down to practice abdominal breathing.  I recommend they practice standing - - - actually, leaning forward, forehead leaning/resting against arms held up and crossed above their shoulders, against a wall, or high-backed chair or similar object.  One foot is forward with knee bent.  The other is back and straight.  With the arms up and crossed AND the head resting upon the arms, you CANNOT breathe with the upper-chest accessory muscles (unless you work even harder!).  You can pretty much o-n-l-y breath with your belly.  AND, the most common 'complaint' I get from patients who try it is that they don't feel they are doing enough work to breathe so easily! ! !
 
So you are on the right track with your approach, IMHO.   I would encourage you to share your approach with others who need it AND for those on the list to stick to this method, rather than the more popularly quoted laying down method, which I have serious doubts of MANY years observation is good for ANYTHING at all, let alone truly improving breathing.   At the very least, it is not nearly as effective at resolving the basic discoordination of accessory muscle breathing.  It has never been shown empirically to do what it claims.  There is only anecdotal evidence at best.   The lorditic 'tripoding' method of which I speak, to be fair, has no "organized" empiric data, either, but only anecdote.   However, as any knowledgeable physical therapist can attest, it DOES have sound theory behind it, as opposed to the popular/traditional method. That's all I'll say about this, for now. Regards, Mark

How Do You Evaluate Breathing Tests?

Q. Can I ask you a question about the breathing tests.  I had my test results with my Pulmonologist and the heart scan was ok, the CT scan showed that I had COPD with Emphysema as moderate....I also had a load of breathing tests and he said that they were better than last time, because I then had a chest infection, but this time he didn't think that they were consistent with what he thought they should be, so I have to go back in a couple of weeks and do them again.

I can't make heads nor tails of the Fev's...is it the more air you can blow out the more damage you have or the longer you can blow out the less damage to your lungs there is? I am following the links as suggested by Kath, but I hope that you can explain this for me. Thanks Lynn.

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A. As you should have picked up from the links you visited, COPD - - - Chronic Obstructive Pulmonary Disease is all about problems with getting the air OUT of your lungs.    Emphysema is characterized by having too much air left in the lungs at the end of your normal exhalation.  There are particular 'structural' changes that both define Emphysema and distinguish it from the other COPD's, but since your question has to do with airflows and PFT's, I won't go further into explaining the structural changes.  That information is easily available elsewhere on our site and links to other sites.
 
The FVC - - - Forced Vital Capacity - - - is the most air you can blow out after taking IN the deepest breath you can.  You are coached to blow out hard and fast AND for as "long" as you can.  This measures ALL of the air you can possibly muster energy to expel from your lungs.   To be considered within normal range, you should be able to blow out at least 80 % of what is predicted for you based upon your age, height and gender.
 
The FEV-1 - - - Forced Expired Volume in the first second of a maximal-effort exhalation - - - is a "timed" maneuver and is extracted from the amount of air you blow out in the FVC.  Indeed, it accounts for all of the air blown out for the FVC that is expelled in the first second of that exhalation.   As such, it requires you to blow OUT as hard and as fast as you can possibly muster energy to do so AND put forth in that crucial first second of exhalation..   It looks at of ALL the air you can blow out, how much of it did you blow out in that first second.   You should be able to blow out more than 80 % to be in the "normal" range.
 
In terms of the way you stated your two specific questions about "how long" and "how much", you had it exactly the opposite of what it really is.   The LONGER it takes you to blow out all the air you can blow out, the WORSE your COPD.   The LOWER the total amount of air that you can blow out, the WORSE your COPD.
 
Regards,
 
Mark

 

Help for Bronchiectasis?

Q. Yesterday, I had another bronschoscopy and was told that I have bronchiectasis. I think this was why I was coughing and wheezing and getting so many infections.  What a bummer!   I'm wondering if anyone else has this and what is your doctor doing to help you?  Thanks, Mary Ellen-GA

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A. With Bronchiectasis, in some ways YOU can do more than your doctor to help yourself! ! !   No kiddin'!    Often characterized as the single most important measure to reduce and resolve infections is airway mucus clearance therapy.  That entails postural drainage positions, held for several minutes a couple to a few times each day, to allow gravity to help drain the mucus into your larger airways so you can cough it out.   Adding percussion and/or vibration over the area being drained is felt to enhance drainage time and mucus movement.

Bronchiectasis involves the stasis of mucus (it sits and pools in cavities within the airways), allowing it to harbor and propagate bacteria that cause further infections and scarring damage to the airways.   Good mucus management is essential to thwart that cycle/process.  Some doctors have their patients take bronchodilators and mucus thinners, like Dornase Alfa (Pulmozyme) and even antibiotics, by nebulizer.   You should check into that with your doctor to see if it has a place in your treatment plan.  Some
doctors treat their Bronchiectasis patients with every-other-month oral antibiotics, or even IV antibiotics every three or so months.   Treatment is really dependent upon severity of your problem.   AND, each individual needs to be considered individually.

Maybe Dr Karpick can shed more light on the 'usual' approach to treatment of Bronchiectasis. Regards, Mark

Is Cor Pulmonale Reversable?

Q. Once we have cor pulmonale, what then?  Is there nothing that can be done to reverse that damage to the heart? Kathy W

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A. Good question, Kathy! Cor Pulmonale is not thought to be reversible because of the component of lost vascularity.  BUT, in some cases, right heart enlargement CAN be reversed to some degree by "normalizing" oxygenation AND with reconditioning (the dreaded "E-word" - - - exercise).    "Normalization" of oxygenation means JUST THAT.  You have to maintain relatively high levels (> 94 % - - at ALL POSSIBLE times, and at least > 75 % of the time)   Exercise must be vigorous enough to challenge heart function to increase AND must occur under conditions of normal oxygen saturation.   Even when conditions are made ideal for the change to occur, we still cannot predict who will or will not change/improve.   Its kind of a roll of the dice.  
 
I have seen improvement in many patients.  But I'd have to estimate that it was less than half of the time.    When I speak of improvement, I mean it is such that when we lay one earlier chest x-ray over another later exposure, where the dimensions match, we can see a decrease in the diameter of the heart shadow.   Reasons for lack of better success are several - - - not good enough oxygen enough of the time, not able/willing to exercise vigorously enough to cause change, other factors like poor control of fluid balance, other co-morbidity (disease conditions, like diabetes, arthritis, etc) that limited ability to pursue effective intervention.
 
In many cases, the doctor simply doesn't agree with attempting to work towards improvement in the right heart failure - - - not because they don't want the patient to get better, but because they just don't think there's enough evidence to support an avant gard approach and putting the patient through all that with no guarantee, or even a good predictability that it will help..   It is true, there IS only limited empiric evidence that these actions can directly cause improvement.   Again, it is a matter of E-I-T-H-E-R "What have we got to lose? . . . and plow ahead!", OR "It's a long shot with no guarantees. Why put my patient through all that IF it fails to make a big difference/the intended difference?"   On the other hand, even in those in who we attempted the more rigorous approach who DIDN'T see a change in their heart enlargement, virtually 100 % of the time, their overall condition, function and stamina were seen to improve in the effort.  So argument would have to be made that even though we can't promise bug changes in heart size and function, we CAN expect to see meaningful improvement in heart function within the limits that can't be changed AND better overall condition of the subject for the time and effort they put forth.
 
So, in the end, Cor Pulmonale is pretty much a done deal without potential to alter or reverse.  CHF with enlargement of the right side of the heart CAN be reversed/altered toward improved function in some people.   But, it takes quite a bit of intervention that may not be a lot of fun along the way!
 
Regards,
 
Mark

 

How Can the Heart be Measured?

Q. I would like to know how can I tell if I have an enlarged heart?  How can the heart be measured?  Ione / Wi

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A. While an echocardiogram will show it AND it can be seen on a standard chest x-ray once it is prominent, the REAL consequence is what is the pulmonary artery blood pressure.   By the time the pulmonary artery blood pressure has been elevated enough to cause enlargement of the right side of the heart, it has been going on for more than one, even two years!!!    The appropriate action is to measure oxygen saturation during exertion starting at an EARLY time.   Once saturation is seen to fall below 93 % (MY preferred number, ONLY), then pulmonary hypertension should be on the mind of the clinician and investigated from time to time.   When found, (IMHO) oxygen therapy should be instituted, no matter what the saturations remain.  I say that meaning, currently, you have to have a saturation that falls below 89 %--no matter the circumstances --in order to qualify for oxygen therapy payment from Medicare.   BUT, pulmonary hypertension can and does occur in many folks while their saturation remains above 90 %.   My daughter is a perfect and typical example.   At a saturation of 92 % her pulmonary blood pressure was 55/20 (remember that 20/5 is normal and anything over 25/10 is considered elevated from normal).   When she dropped to 88 %, her pulmonary blood pressure was sustained at over 80/25.  
 
All of this occurs long before the heart size changes.   So it is more important to assess for pulmonary hypertension than to wait to look for an enlarged heart, when by then, it is a day late and a dollar short!!! Regards, Mark

Retaining CO2

Q. If we have COPD doesn't it mean we are likely to have C02 retention? Also, wouldn't sleep apnea have C02 retention side effects? Mary-PA

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A. Good questions.   Only those who have significant air-trapping and low FEV-1 on their pulmonary functions tests are seen to retain CO2 to anmy significant degree.  In that case, the lower the FEV1, the greater the CO2 level when the individual is in a "steady state"--also referred to as "at baseline".
 
The increase in CO2 that would be seen during sleep apnea would be referred to as an "acute" increase and is only transient, occurring during the apneaic period and abating when ventilation resumes.   Folks who have had sleep apnea for a long time can be observed to have "chronic" CO2 retention, because their bodies will slowly compensate for the 'repeated' acute increases, resulting in a slow creeping up of their CO2, over time. Regards, Mark

Organ Damage with Low Oxygen

Q. I understood how the heart could suffer due to lack of oxygen because it had to work so much harder to circulate blood with insufficient oxygen it in to meet the body's demands. It never occurred to me, until now, that lack of oxygen itself in the body would result in organ damage. I should have figured it out...but it evaded me.  How serious is this problem??

If one is diagnosed and treated later in the disease....and requires oxygen at that time...how much damage has likely been done then? I know no specific answer is possible because there are so many interdepending factors. I guess I'm asking if anyone has problems (other than cor pulmonale) or CHF...such as liver or kidney disease....what about general brain damage?

I don't want to be maudlin...I'm trying to understand and cope. Thanks, Barb

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A. The 'damage' to the heart from low oxygen levels is not "direct", as in its having to function in an oxygen-deprived environment.  Actually, the Kidneys, Liver, Pancreas and Heart function quite nicely until oxygen levels drop "S-E-V-E-R-E-L-Y" - - - like down below 40 mmHg pressure (Saturation less than 65 %).   The brain does not fare so well, however!  With low oxygen levels - - - especially chronically low levels, we see confusion, perception problems and changes in the tissues, among the affects.  
 
What causes the heart to function increasingly worse is what happens in the lungs when oxygen is below normal!   The 'right' side of the heart pumps blood to/through the lungs.   It is intended to function as a "low-pressure" system, with the normal blood pressure in the lungs being around 20/5 mmHg.  (Compare that to the pressure in the 'rest' of your body [systemic blood pressure] that the 'left' side of your heart generates at 120/70mmHg, for instance.)   The blood vessels within the lungs are extremely sensitive to changes in oxygen, when it drops below normal.  They are also affected significantly by changes in the acidity/alkalinity of the blood.  Unlike the 'systemic blood vessels', they are very minimally affected by changes in "vaso-active" substances like adrenalin and dopamine.  
 
So, if your oxygen drops below normal, the blood vessels within the lungs constrict.  The lower the oxygen goes, the more and tighter they constrict.   Higher pressure is required to push blood through constricted blood vessels than for relaxed/normal vessels, because of the increased resistance of the more narrow vessels to flow through them.   So, when the oxygen level drops, the right side of the heart must pump with more force/pressure to get the blood through the lungs.  If this occurs frequently and/or for prolonged periods of time AND 'over' a prolonged period of time, the right side of the heart - - - especially the ventricle - - - must add muscle mass to meet the load demand.   As it increases muscle mass, the amount of blood it can hold and pump decreases because the chamber's 'space' is increasingly occupied with muscle mass.  Further, because, unlike the skeletal muscles - - - which can build/bulk up and perform ever better as they increase in size and strength - - - the heart muscle does NOT function better when its mass increases.  Indeed, it becomes like a 300-pound canary trying to fly!   Its fat and floppy and sluggish in its performance. 
 
As circulation slows/decreases under the burden of increased resistance from the lungs, water begins to separate from the blood's plasma and leak out through the walls of the blood vessels.  It is pushed 'in between' the tissues (what we call the third space) and elsewhere according to how much there is , gravity (ankle swelling) and the severity of compromise of heart function.  This manifests as what you know as Congestive Heart Failure (CHF).   Cor Pulmonale is CHF of COPD with some of the reason for increased pulmonary resistance to blood flow being the result of lost 'vasculature' (blood vessels), their having been destroyed as other lung tissue is destroyed (emphysema,. in particular) and also includes the feature of CHF.
 
You ask about what damage might already be there and how bad it is by the time you are discovered to be hypoxic and prescribed oxygen?   That is part and parcel of the controversy over starting use of supplemental oxygen 'sooner' than 'later' in the scheme of things.   Some clinicians argue that the earlier that hypoxia is detected and oxygen therapy is instituted, the longer we can stave off the strain and damage to the heart and CHF/Cor Pulmonale.  They surmise that it would translate into longer, healthier life for those with COPD and lower healthcare costs during that longer life.    Others are not convinced that earlier intervention thwarts earlier damage sufficient to burden the currently over-burdened health care system with the costs associated with the increased utilization of oxygen therapy that would result from earlier intervention - - - at least not without empiric data to justify such a change.   Doing studies to gather empiric data, one way or another are fraught with ethical difficulties.   And, at this point, we don't have any empiric data to support the more costly route over that which has been established as the "acceptable" standard for M-A-N-Y years, now.
 
So, there you have it, an explanation of the damage cycle from lack of oxygen to the lungs AND the dilemma of "when" it is 'b-e-s-t' to initiate oxygen therapy. Regards, Mark

CO2 Retention

Q. I was at the emergency room most of the night with my sister, who has severe COPD and will NOT wear her oxygen most of the time.  They mentioned that she was a retainer--  I have looked online at this am not able to understand exactly what is happening and what can be done.  Any info on CO2 retention will be appreciated. Thanks. Carrie

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A. Folks who have advanced COPD have lungs that have enlarged to the point that when they 'breathe normally' they cannot take in enough fresh air to dilute the CO2-rich air inside their lungs sufficiently to return its concentration back to normal levels.   As this condition worsens with the progression of their disease, their CO2 level continues to rise.   We call them CO2 retainers because their CO2 levels are higher than normal--sometimes by a large amount.
 
There are 'some' in the pulmonary medical profession that believe that CO2 retainers get their stimulus to breathe by their oxygen being low.   The lower the oxygen level, the stronger the stimulus to breathe.  Conversely, the folks are said to "lose" their stimulus to breathe as their oxygen level rises toward and above normal.   Therefore, they surmise that it is best to hold back on oxygen for these folks so as to keep them oxygenated just well enough to keep from damaging their heart too much, too soon, BUT not to give them so much as to wipe out their stimulus to breathe.     
 
In the ER the other night, you probably encountered some folks who didn't seem too worried about your sister's poor compliance with wearing/using her oxygen.   They weren't concerned because they probably believe that if she WAS using her oxygen more, she might be at risk for increasing her CO2 and diminishing her drive to breathe.  
 
Currently, there is controversy over the validity of this notion/theory.   Besides some folks arguing against physiologic theory to support the notion, it is felt that the levels of oxygen which must be maintained are too low AND allow heart damage to occur in an "imposed" fashion.   They argue that the oxygen level considered to be adequate for CO2 retainers is significantly lower than the lowest levels they would accept for those who DON'T retain CO2, suggesting that what is good for the goose is NOT also, good for the gander!      They argue that persons with CO2 retention levels should use enough oxygen to keep their levels high enough to prevent 'inposition' of damage on the heart and NOT worry about the CO2 retention.  They also believe that folks stimulus to breathe won't be adversely affected by having the better oxygen levels.
 
You would be hard-pressed to find this much discussion about this topic in the popular literature on the internet, let alone elsewhere.    AND, until this is settled, it is best to find out what your sister's doctor wants her to do.   If he wants her to keep her oxygen on more than she is, then you should encourage her do to so.  If he wants her to continue using it only as she feels the need, then, you'll just have to honor that and roll with the resultant punches. Regards, Mark

Exercises

Q. I am very new to the EFFORTS group:  diagnosed with lung cancer and COPD in January of 2003.  The tumor was removed with a lobectomy (upper right lobe) in March. No radiation or chemotherapy.  I am on oxygen nights and during exertion.  I feel good so far and have tried not to limit my previous activities.

My question:  I use the stretching and strength building exercise on the EFFORTS web site every day and am wondering if you could recommend any other sites that provide other exercises that I could use.  Unfortunately there is no rehab center within 80 miles of my home.

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A. You should be on a walking program.  If you have a mall, or sizable grocery store, you could walk inside.  If you use oxygen at night, then you very likely need it for exercise.  So, use it at or a couple liters more than what you use at night.   If you can, have your doctor do a walk test while measuring your oxygen saturation and titrating your oxygen up to what level you need.   That takes a lot of the guess work out of knowing how much you should be using.
 
Walk at a steady pace so as to "challenge" your breathing, but not to 'waste' you with breathlessness.   Work up to at least 30 minutes.  Then increase your speed over time to as fast as you can tolerate for the WHOLE walking period.   Remember the longer and faster you can EVENTUALLY walk, the better your condition AND breathing will be.   Do NOT worry about adding grade to your walking path until you can handle at least 2.5 mph and 30 minutes, non-stop, IF you get to that point.  Realize that it could take you a matter of "months" to work your way up to the levels of which I speak.    That's OK.  You didn't get this way over night.   AND, it won't get better over night, either. Regards, Mark

Headache in the Morning

Q. Could you please tell me what headaches in the morning could mean?  I have also noticed from time to time that I have pulled the plugs from my nose and I am awakened with pretty bad headaches. I had also went to the grocery store just the other day and by the time I had gotten home I had one heck of a headache - when I went to change over from my portable oxygen to the concentrator I noticed that I hadn't turned the valve on for the portable oxygen. I'm on oxygen 24/7 at 2 liters. Thanks, DeDe

* * *

A. Regular headaches in the morning can be signs of either/or hypoxia (from the cannula coming off during the night) and/or increased carbon dioxide levels in your blood from hypoventilation during sleep.  You doctor can determine if one or both are possibly causing your problem by doing a sleep study and blood gases, among other potential tests.  Check with your doctor, soon and see what's up! Regards, Mark

 

Rib Pain

Q. I have very strong rib pain when I reach too far or reach behind my back.  It seems just to be from stretching too far.  I have noticed it a lot in the last year.  Someone mentioned that it was Emph. that caused this.  If so what can I do to correct it or must I learn to live with it?  I have been tolerating it but if I could change it, that would be great.  Any ideas??????

* * *      

A. Stretching exercises will usually improve of alleviate that type of pain.   You might benefit from myofascial mobilization therapy, something done by Physical Therapists or Occupational Therapists.    See if you can get a script to go to see a PT for evaluation.  NOT doing anything AND avoiding stretching and lifting will increasingly predispose you injury under milder and milder conditions.   It can also travel over into your joints and cause you to lose range of motion.   You should do something 'sooner' than later, IF you want to avoid losing strength and mobility 'sooner than later'.! Regards, Mark

Oxygen and Sleeping

Q. My question is my Dr put me on oxygen 24/7 I have CHF and emphysema .I am puzzled because my oxygen is off when I wake up after 6hrs sleep an I feel fine. Is it possible I don't need it 24/7. How come I don't gasp for air if I am that sick.

* * *

A. I don't know of anyone who uses oxygen whose oxygen has not come off a few times, if not routinely.   They too, have not noticed any big difference.  That does NOT mean they/you don't need it.   While you may be able to go for quite some time without the supplemental oxygen while you are not active/exerting, and not feel any the worse, it certainly does NOT mean you can do without it ALL of the time.   There are other circumstances under which you will feel very bad, while off of it.   For those times, is when and why you need to continue using it.   In the meantime, you should try to keep it on at night at least for as much of the time as you have control over.  If you awaken to find it off, simply put it back on and return to sleep. Regards, Mark

Criteria for Prescribing Oxygen

Q. "What are the criteria for prescribing O2 in the US?" Ken

* * *

A. There are a hierarchy of conditions that must be met to qualify for supplemental oxygen to be reimbursed under our Medicare program.   I use Medicare as the example because in the US, they kind of set precedent by which other insurers set their reimbursement policies.   They include a resting or exertional oxygen level that drops below specified points, 'polycythemia' (thickened blood from too many red blood cells) and physical and/or electrically (conduction) indicated changes in heart function, as major points of consideration.   You can tap into the CMS regulations for detailed specifics.
 
Heart rate is NOT one of the criteria for determining need for or response to oxygen therapy.   Heart rate C-A-N be influenced, especially in a downward direction, by oxygen therapy.   BUT, I hasten to add that it is not a "primary" or anticipated effect when we put someone on oxygen therapy.
 
M-A-N-Y things can cause heart rate (resting AND exertional) to be elevated in the person with COPD.   Medications, physical condition, body mass, and severity of disease are just a few M-A-J-O-R influences.   Further, to look at heart rate as a direct measure of how someone with COPD is doing in response to interventions--like exercise tolerance, in particular--is fraught with hazard.   Unless one knows the subject (person) very well and has seen the subject's response across the range of heart rates and activities, to be arbitrary about 'numbers' can be horribly counterproductive, limiting the subject unnecessarily OR placing them at risk for injury or worse.  
 
I've had patients whose resting heart rate, like yours, Ken, was elevated at 110 - 125/min.   Their doctors send me orders forbidding exercise when/if the heart rate exceeds 120/min, or 130/min, for example.   I'm sunk, dead in the water with orders like that, because the patient barely gets started and the limit is exceeded.   YET, those patients express NO symptoms to be concerned about with rates up to 150/min and 160/min!   So, when I gst the orders rescinded and take them up under MY discretion, they accomplish amazing things!   AND, over time, their resting AND exertional maximum rates decrease, even if medications don't change.
 
My bottom line in all this is to caution that heart rate - - - in and of itself - - - is NOT a stand-alone parameter.  It should not be the only vital sign considered when looking at conditions, interventions and responses to many things - - - least of all oxygen therapy!   ALL of the factors that influence heart rate need to be considered to place it in proper perspective.  To fail to understand that unnecessarily opens the doors to difficulties and dangers. Regards, Mark

Bronchiectasis

Q. Yesterday, I had another bronschoscopy and was told that I have bronchiectasis. I think this was why I was coughing and wheezing and getting so many infections.  What a bummer!   I'm wondering if anyone else has this and what is your doctor doing to help you?  Thanks, Mary Ellen-GA

* * *

A. With Bronchiectasis, in some ways YOU can do more than your doctor to help yourself! ! !   No kiddin'!    Often characterized as the single most important measure to reduce and resolve infections is airway mucus clearance therapy.  That entails postural drainage positions, held for several minutes a couple to a few times each day, to allow gravity to help drain the mucus into your larger airways so you can cough it out.   Adding percussion and/or vibration over the area being drained is felt to enhance drainage time and mucus movement.

Bronchiectasis involves the stasis of mucus (it sits and pools in cavities within the airways), allowing it to harbor and propagate bacteria that cause further infections and scarring damage to the airways.   Good mucus management is essential to thwart that cycle/process.  Some doctors have their patients take bronchodilators and mucus thinners, like Dornase Alfa (Pulmozyme) and even antibiotics, by nebulizer.   You should check into that with your doctor to see if it has a place in your treatment plan.  Some
doctors treat their Bronchiectasis patients with every-other-month oral antibiotics, or even IV antibiotics every three or so months.   Treatment is really dependent upon severity of your problem.   AND, each individual needs to be considered individually.

Maybe Dr Karpick can shed more light on the 'usual' approach to treatment of Bronchiectasis. Regards, Mark

Upper Body Exercises--How Often?

Q. In the Breath Well magazine this month there is an article on Pulmonary rehab.  In the article it sounds like they are saying to do your upper body exercises every day or more than one time a day.  I thought we were only supposed to do them every other day.  Is this because what they are talking about are very small weights?  Another question, are there any more good exercises for strengthening the legs besides walking, bike and bambis? (Ones we can handle) Thanks, Wanda, NM

* * *

A. I am aware of no printed recommendations to do exercises of this type 'only' once every other day.  I would strongly advise daily exercise of this type and indeed concur with "Breathe Well" magazine's twice-daily recommendation While some folks may be so weak as to require 'working up' to a daily then twice daily routine, twice daily is not an unreasonable 'goal' for these
exercises.

Insofar as leg "strengthening" exercises are concerned, I wouldn't place walking and biking in the strengthening category under A-N-Y of the circumstances that we 'recommend' for them to be done, let alone those of which pulmonary limited patients tend to do them.   The "Bambi's" of which you speak, I presume are sit-to-stand exercises using a chair.  Those are good for starters.  For r-e-a-l strengthening of the legs, step-exercises are very good.  If a bike is used, as well, short-burst riding against significant resistance MUST be the goal.   Here I speak of say, 5 to 10 minutes at a time FULL-OUT, riding hard, against sufficient resistance to make it 'hard'.    Anything less constitutes endurance building.   NOW, as to capability to tolerate this kind of 'vigor', I would imagine most of our members could not tolerate that level of exertion because of the havoc it would wreak on their breathing.   SO, my best recommendation would be to stick with step-exercises - - - perhaps using a cinder block or two on its/their side - - - starting with a few repetitions at a time to achieve windedness, then a couple more to work within that windedness, followed by a GOOD rest period - - - one such that you regain comfortable quiet breathing AND THEN rest a few more minutes, before trying additional exercises - - - of ANY kind.  Cinder blocks are standard at 8-inches, a good height for stepping.  If step-exercises are too difficult, then the Bambi's are in order until enough strength is built up to graduate to the step-exercises.

You ask for "ones [you] can handle".   I'm afraid anything less than the Bambi's are not going to generate meaningful condition, let alone lead to being able to move toward Bambi's with reasonable ease.    No one can say this is and easy row to hoe!    But, with determination, patience and perseverance, it CAN be done! Best Regards, Mark

WEI Labs Soup

i just found a website that boasts elimination of symptoms from COPD using an herbal soup.  Has anyone had any success with this treatment approach or know anything about it? Thanks...Will C

* * *

A. The Wei's actually seem sincere in their portrayal of their purpose and products.  They have actually been able to get two insurance companies to pay for their products - - - though, they conspicuously leave out 'which' product(s) was (were) covered.   They claim to study their products with what appear to be legitimate and preferable study method ("double-blinded [placebo-controlled] clinical studies") using "medical doctors" - - - "in the USA", AND they list several "case studies" as having been conducted.   Yet there is no information on the site about the "r-e-s-u-l-t-s" of those studies.   Their site is conspicuously absent of the usual "testimonies" others attempt to use to portray legitimacy and efficacy.   So in that I give them a plus for lack of a "sleaze" factor.   Indeed, from what I know, this comes from Chinese herbal medicine principles that date back many, many years.    Many miraculous results have been observed in the homeland use of these methods.   Our medical machine has even acknowledged effectiveness of many methods for various ailments.   That is NOT to say that our medical machine has granted legitimacy or approval for those methods.
 
I'm thinking that of many sites I've come across in the past, this one is about as sincere as I've seen and low on the sleaze factor scale.   Having said that, I have to caution with the usual cautions about those who would claim to cure COPD with their "potions".     On the pages that describe the "soups", the claim is made that not only will they eliminate the symptoms of COPD - - - which they go on to define as emphysema and bronchitis - - - but they also state that the soup treatments offer "hopes of cure for COPD patients."    I think the FDA would view this as making an (at the present time) unsupported claim of health benefits.   While they call their treatments "nutriceuticals" (nutritional medicinal formulations), they portray them as medicines rather than food supplements.  As such, I think they are vulnerable to FDA action for their claims.
 
Ultimately, as with all things, you use them at your own risk.   We patently recommend you check with your doctor before engaging in any alternative therapies that may impact both your well-being AND your current conventional treatments.   After that, it is up to you. Regards, Mark 

SOB After Sitting Down

Q. Lets say that I am on my way into a store and have a 100 yard walk ahead. When I start, I use PLB on the way to "extend" my distance. About 1/2 way there I start to get a little "winded". Breathing at this point seems to speed up and I know if I continue I will wind up SOB. At the winded stage when breathing starts to speed up, should I try to slow my breathing down and continue PLB or stop and recover enough to continue? I find that sometimes when I start to get a little winded I can slow the pace of "work" enough to continue on without getting SOB.

Why is it that on a comfortable walk to the truck I get there feeling just fine but when I sit down I get SOB? The same thing happens when I bend over to pick something up off the floor. I have found that sometimes when I sit down or bend to lift something that if I exhale I get along a lot better.....most of the time...

On a visit to my Pulmo he mentioned the Advair colors on the labels. Green is on the 100/50,Yellow on the 250/50 and red on the 500/50. As usual he was short of time and didn't really explain what the different colors indicated.I have looked at the Advair web site and they mention nothing about the colors.This was pointed out to me as he prescribed the 100/50 Green to use when I was going to have a "easy going day". He prescribed the 250/50 Yellow for days when I was going to be active.He also said that the less of this I can get by with, the better.. I also was prescribed Combivent.At first it was 4 hits 4 times a day. However on a later visit he changed it to "as needed".I ask,"what if I get too much"? His response was "you can't get too much".What are your thoughts on that? Anything you have to offer would be appreciated........Rusty

* * *

A. First question:  Slow your pace and keep going.   Part of the dynamics of this problem is perception and advice from well-meaning but unthinking folks (some of the doctors and RT's) (here we go again!)   What you are being taught is "shortness of breath" actually is windedness.   Too many wrongly teach that you shouldn't become winded.  If you do, you should stop what you're doing, get over it and then continue.  The problem is, by stopping and getting over it, you never overcome it.   Further, you continue to lower the threshold at which windedness sets in.  You work "toward" deconditioning ! ! !   The more you stop, the sooner you subsequently have to stop.   The same goes for exercise.  Often folks are stopped during exercise because they have become winded and uncomfortable.  They never progress, or progress exceedingly and unnecessarily slow under those conditions.  Often, they fail to achieve their maximum - - - not because they can't, but because WE inhibit them by holding them back because of what WE perceive to be bad for them.
 
I encourage my patients to ACHIEVE windedness and then to "work within" it to go the distance.   As long as they are not hypoxic, the windedness threshold WILL be raised, over time.   That is the ONLY method by which I have observed the success I see in my patients.
 
Next question:   A mistake I think folks often make is to stop their PLB/comtrolled breathing once they have arrived at their 'destination'.  They fail to realize that the work is not over until after a couple of minutes have passed AFTER they stopped exerting.   So, when you stop walking, or whatever the exertion you were engaged in, you need to continue to be deliberate about your controlled breathing and PLB until you have returned to your "pre-exertion" level of comfort and breathing dynamics.
 
Next Question:   What a creative way of dosing you on Advair.  It seems like more work, BUT if it works, hey, who can argue with success.  I'll watch to see if others are beginning to use such a method.
 
Last question:  While it IS possible to get too much abluterol through overuse, the likelihood IS remote that you will consume that much.   I would caution that if you find you're taking more than 4 inhalations every two hours that you should be communicating with your doctor, as that could represent looming trouble in regards to a potential exacerbation. Regards, Mark

Nutritional Supplements

[Comment] My doctor had me try Pulmo Care.  I added a scoop of ice cream.  I did not gain an ounce, probably due to  overwork and stress related to current personal problems.  I saw my doctor yesterday and he prescribed a pill to increase my weight.  The scrip is at the pharmacy at the moment, but I will let you know what it is after I pick it up.  I am relieved to know that I am not the only one with this problem! Ellen - Tennessee

* * *

A. While Pulmocare is a fine supplement, I would also recommend two other avenues that will yield many more calories in the same relative quantity AND be comparable to less in COST!
 
"Boost Plus" is a great alternative!   It delivers over 500 calories in 12 oz. and costs about the same as Pulmocare.   It ALSO has as much or more fat than Pulmocare. AND, it may often be cheaper!   You can get it from most any pharmacy and even Wal Mart, where you might find the best price.
 
You can mix a package of instant breakfast with 8 0z whole milk and 2 - 4 oz of high-fat (> 12 %) ice cream and add 1 - 2 Tbsp vegetable oil for a drink that exceeds 600 cal in ~12 oz.   Add fruit or flavoring to your favorite tastes for a drink that is delicious AND high in calories and fat. Regards, Mark

"Obstructed Lungs"

Q.  I wish drs. would be more explicit on this subject.  When I first went to a dr. about this problem, he called it obstructed lungs.  When I tried looking that up, I got buried in an avalanche of stuff about so many different lung problems that I didnít know what I had.  Finally several months later after many tests and a hospital stay, the word emphysema finally was spoken.  Maybe he didnít know for sure, but it sure would be more helpful if they said up front that is looks like COPD or emphysema or cancer but we need to do more tests.  You always worry a lot more about the stuff you DONíT know than the stuff you DO know!

* * *

A. I don't think its a matter of your doctor not knowing what you had.  Rather it is a matter of his taking for granted that you would know that what he meant by "obstructed lungs" (as you put it) was that you have COPD.    The fact that you didn't know enough to ask what he meant by obstructed lungs AND the fact that he didn't explain what he meant by using the phrase are wherein your confusion lay.   He essentially told you that you had COPD when he told you you had obstructed lungs.   So, its not a case of needing more tests, or needing more time to go by, or needing more than he had in hand to be able to definitively say "You have COPD/Emphysema/Obstructive Lung Disease.    My bet is that when you didn't ask for further information and/or explanation, he took it for granted that either you understood what he was telling you, OR didn't really care to know more.   Its hard to say.   BUT, regardless of how naieve you may have been, your diagnosis was made way back when he said you had obstructed lungs.  You just didn't know what that really meant.   In any case, yours is yet another fine illustration of the admonishment to ask questions until you have no more! ! !     You can't make intelligent choices about treatment, behavior changes or anything else to help yourself when you don't have the necessary facts.    Yours is a good lesson from which ALL should learn! Regards, Mark

Air Purifiers

Q. Do room air purifiers help at all?  If you only had one in the bedroom and the rest of the house was without, would that be at all helpful? Would appreciate any information or experiences you have.

* * *

A. I view air purifiers with s skeptic eye.   While they can and do work as intended, the conditions under which they do so must be right.   Often, I don't see them in place, or in play.    Air purifiers, generally are no small investment (by my Scot's-wallet standard--then again--I have been called--shall we say--frugal? !).   So If one is going to spend the money, then they should not only get a good product, but also do what needs to be done in order for it to work properly and effectively.    However, that said, if one is willing and able to bear the cost of an air-purifier AND they find benefit in what they use, that is great.   You just have to be sure you get the right machine for your circumstances.   AND, you need to be sure to get a machine that does not produce significant, if any, ozone in the purification process.   (Most all models indicate whether or not the produce ozone and how much.  If not, check with the manufacturer.)
 
You say you want to get one for your bedroom.  It will do nothing for that room or the rest of your home if you leave the door open.  You should be able to get efficient results if you close the door when it is running.   You should start it running 30 - 60 minutes before retiring for the night, so that when you go to bed, the air is already purified.   Keep your bedroom door closed all night to keep the purified air within the room.   Opening your door will defeat the purpose and erase benefit.  Indeed, all you would have done would be to add noise to your environment, as the air purifier would not be able to produce any significant purity to the air that is circulating through an area larger than the room for which it is sized. Regards, Mark

Bruising

Q. On my arms and the back of my hands are red bruises that get there from the slightest bump or scrape. The skin seems to break easy as well. They will come on the face to.I also have several small scrapes that won't heal. Was just wondering if I have some vitamin deficiency...I am not diebetic.. Also on my chest there is some red splotches that I have had for about a year before I started to take medication for Emphysema. Advair and Combivent is what I use and Singlair. The splotches after a long period of time become a little itchey and a small amount of dry scaly skin comes off.....Rusty

* * *

A. Sounds like you have classic signs of dermatological (skin) changes associated with steroid use.   You have steroid in the Advair, but for most folks, not enough to cause changes to the degree you describe.  I'm afraid I have more questions than answers, because based upon only the information you provided, I can't tell you anything definitive.   Are you over 60 years old?   Do you take, or have you recently taken Prednisone, or other steroids, aside from the inhaled one in your Advair?    Does your family have a propensity for developing the thin, easily damaged/injured skin as part of aging?
 
The only recommendation that I've heard repeatedly over the years is more "zinc", as far as vitamins/minerals, on top of a good all-around multi-vitamin.   Some say more phosphorous intake, but that is a whole 'nuther difficulty in itself.   I don't know what to recommend, so I'd rather not recommend than to give you a bad recommendation.   Maybe, one of our good doctors here on the list, could offer some insight and advice on this question. Regards, Mark 
 

COPD vs Emphysema

Q. Can anyone tell me the difference between COPD and Emphysema?

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A. The 'difference' is that there is "NO" difference.   COPD is the "umbrella" term that includes chronic bronchitis AND emphysema.   While attempts are currently being bandied about (mainly by the WHO and our American Internal Medicine Association) to change COPD to mean only chronic bronchitis, the prevailing definition of COPD remains as I defined it.   That is the definition by which we--pulmonary medical professionals--operate.   Until there is a consensus, this will not likely change.   So anyone who may be trying to make a distinction like you are asking about is either making the distinction for their own edification or are trying to push the proposed changes from the long-standing definition by which the majority of the pulmonary medicine community still operates. Regards, Mark

Telling if MDI is Empty

Q. I was told at rehab to place the canister in a bowl of water.  If the canister is straight up and down it is full.  If on it's side it is empty. When I am in doubt I use the water bowl test.  Even when empty it sounds like there might be some in there when you shake it but I don't use it then if it floats on its side. Diana

* * *

A. Current recommendations d-i-s-c-o-u-r-a-g-e use of the float test.  Some MDI's now publish in their patient literature that you should NOT use the float test with their inhaler.  There are several reasons, the most pertinent (IMO) being that regardless of how much material is in the canister, because of separability of carrier and active ingredient AND the notion that relatively more carrier than medication is put into the canister, such that you can end up with more contents than will be exhausted in the recommended 200 actuations AND, those actuations beyond the recommended 200 maximum of the MDI will not contain a full dose of medication.
 
While there is still much consternation and controversy among my colleagues as to the veracity of the quantity versus quality of dose issue, because of the potential difficulties posed by an ineffective dose, we have to go with the manufacturer's recommendation of maximum number of actuations and then toss the MDI.
 
So, the only recommendation for which there is consensus is to count actuations and discard when the specified maximum has been reached, regardless of remaining contents.   A-N-Y other methods are disputable and certainly wouldn't hold up to legal challenge were there ever a reason for which that would come into play.   Float-testing is actively discouraged by those in an evidence-based setting.   Anyone who is still recommending float-testing is running contrary to current evidence-based recommendations.
 
I'll end by acquiescing that counting presents its problems--so much so that manufacturers are working furiously to devise devices that do the counting for the user.   In any case, there is no more reliable method than to count--hence the reason why it is the only currently 'recommended' method.   Short of having a device, users should devise some sort of reliable system to keep track of actuations.   Either a log of some sort, or even a small record taped to the inhaler, so that you can place marks for each actuation you expel from the canister as you go along using the MDI.    Users must figure out what works best for them.  But to continue to use the float test is not a good thing! Regards, Mark

Too Young for LVRS?

Q. Ben [my son] is 37 years old and lives in Bastrop, Texas.  He was diagnosed with emphysema a little over 7 years ago.  According to doctors his emphysema was brought on by acid-reflux,he has never smoked.  He has maintained fairly well over the last 7 years but is starting to decline.  He is too young to be considered for the two clinical trials going on in San Antonio.  I submitted his name for the LVRS trial going on in Houston.  How do you personally feel about LVRS and what steps would you consider for a 37 year old?  He likes his doctor in Austin, but his doctor is not very aggressive.  I would appreciate your input. Thanks

* * *

A. Hi Sandra, I have referred several patients to the Houston program in the past.  They have been well treated and for the most part did quite well.   LVRS is a procedure well worth considering IF one's emphysema fits the candidate criteria.   Were it me and my breathing was sufficiently uncomfortable and I was found to be a good candidate, I would undergo the procedure.   That is my own opinion where my own life would be concerned, nothing more.    That said, it is a "big operation" and a dangerous one, as well.   As with transplant, the risk versus benefit must be weighed in the decision whether or not to undergo the procedure.
 
Most important in that criteria is that the emphysema MUST be concentrated in an area of the lungs that is removable without destroying too much 'good' tissue.   The total lung volume of candidates should be greater than 130 % of predicted before the procedure will be considered necessary and advisable.   That is because about 30 % of each lung is removed in the procedure, with the purpose of the procedure being to return the lungs back toward normal volume/size.  Next, there must be the expectation that taking out the excess tissue will not significantly impact ability to oxygenate.   While there is no purpose in or expectation that LVRS will improve oxygenation, it should not present the predictable potential to compromise it.   All these criteria are an integral part of the evaluation.   Have you checked to see if Houston is still doing LVRS?   I have heard a rumor that they have stopped.   But, I have neither been able to confirm or dispute its veracity. Regards, Mark

Determining if Spacer is Worn Out

Q. How does one determine when a Spacer is worn out and needs to be replaced?

* * *

A. It would seem to me that the answer should go without saying.  For the Aerochamber, the following would hold applicable.   If it is cracked or warped or otherwise reformed.  If the character and rate of the air drawn through it is significantly altered for the worse.   If the MDI holding rubber component is torn, brittle or otherwise non functional.   Other brands/types of holding chambers have different configurations and components.  But as long as it seems to work as well as it did when it was new, it should be good indefinitely.   That is also contingent upon proper cleaning and storage care.

N-Acetyl-L-Cysteine

Q. Some time back someone wrote about the above and the possibility of helping respiratory disorders. Has anyone had any luck with this (I believe they come in capsules) Joan Snyders-Il.

* * *

[Comment1] I'm one of the ones who raves about it. What it does is to thin mucous. If I go a day or two without taking it, the "frog in my throat" returns, I start coughing and I have to try to free it up. I found that it comes in capsules or tablets. The usual size is 600mg and 60 capsules costs about $12.50. It is not a drug and can be bought "over the counter". I got my latest supply at GNC. Ken in MA

[Comment2]  I'm taking the capsule form now and I'm not quite sure if it's doing anything or not. Four weeks back I got a prescription for the nebulized version and it really made my lungs tighten up. Last time I felt like that was with an anaphylactic reaction. I quit using it after 3 days.

A. Hi Tom, You bring up a point that needs mentioning:  N-Acetylcysteine and N-Acetyl-L-Cysteine are two VERY different compounds!!! N-Acetylcysteine--brand names Mucomyst and Mucosol--is a liquid sulfurous compund that breaks disulfide bonds that make mucus 'thick' and 'stretchy'.  That breakdown is what makes the mucus thinner.   N- Acetylcysteine should be used ONLY by folks who have a lot of mucus production that is so "thick" that they cannot raise it effectively without its being thinner.   N-Acetylcysteine is V-E-R-Y irritating to the bronchial tubes, as you found out through your experience.   Your reaction/response was no surprise.  When we (RT's) use it in our treatment, we always give it with a bronchodilator, at or near the time it is administered, to cut down the chance for adverse reaction and irritation.
 
There is no necessary connection nor theoretical evidence to suggest that N-Acetyl-L-Cysteine would have any properties of N-Acetylcysteine, especially since one works as a topical agent with inhalation and the other is taken parenterally (ingested) and must act through metabolic pathways. Regards, Mark

Lung Diffusing Capacity

Q. Sandra/WA spoke about the improvement in her DLCO and I asked, in a couple of private emails to her, what DLCO was. She was really patient with me and indicated that this was a standard measurement in her PFT results. I have searched my PFT results and can't find anything like DLCO or, per Sandra, its equivalent Lung Diffusing Capacity. So here are my questions: Is there another term for this? Is it really standard in PFT's? Thanks, Otto - NC

* * *

A. Hi Otto, DLCO is most definitely a "third" and unique component of the PFT.  HOWEVER, while it may be of significant import in assessing someone with restrictive lung disease and suspected consequential pulmonary fibrosis, it is NOT of critical import in adequately assessing someone with COPD.  In fact, there are numerous common scenarios in which it is inaccurate in theose with COPD because of gas trapping, uneven distribution and matching of blood flow and gas within the lungs and poor airflow.   So even when it IS done, it can be misleading and useless.   Certainly ask your doctor about DLCO.  But, if (s)he doesn't think it would be helpful for your situation, don't necessarily think the doctor is slighting you in some way. Regards,
Mark

Support for Father

Q. My name is Kathy and I am 35 years old.  I myself do not have emphysema but my 60 year old father has just been diagnosed.  I found this group in my search for information.  I guess I am just looking for some support and some advice.  My father lives alone and 2 hours from my home. I am an only child and will be my Dad's caregiver when he gets to the point that he needs constant care.   I am feeling helpless, scared and worried.  I'm not sure what to do for him at this point.  First, I need to figure out how to support him in his effort to stop smoking.  Any suggestions?  He says he has "cut back" but doesn't know if he can stop.  I also need to help him cope with the fact that he has emphysema among his other health problems.  His shortness of breath has been occuring for several years.  I am surprised this hasn't been diagnosed before now.  Is memory loss among  the symptoms?  Some days he is very forgetful. Thank you for any advice you may have to help me help him.  Kathy

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Hi Kathy, The more he keeps moving as much as possible DESPITE any difficulty breathing, the better he'll do for longer.   This is a "move it or lose it disease".  The difficulty is that working hard to breathe is uncomfortable.  To continue to move and function WHILE working so hard to breathe seems quite contrary to what should be the case - - - stop and relax and avoid getting winded or purposely exerting so as to make breathing more work.   Consequently, folks tendency is to slow down, stop sooner and avoid getting winded and/or uncomfortable.   The problem is the more they do that, the worse their symptoms get.  The less they do, the less it takes to make them winded and uncomfortable.   Pretty soon, they can't do anything.   All of this is different for each individual with COPD.  So no one can tell you 'how long' it will be before your father can no longer care for himself, or manage self-directed living activities.   Actually, I'd be more concerned at this point about his forgetfulness!!! . . . especially if he is living by himself.    He can do much more to harm himself with that than with ANY of his COPD problems! ! !    Forgetting to turn off the stove, put out a burning cigarette--especially if in or near bed--or to take medications can do more harm quicker than ANY actions or symptoms related to the COPD.
 
I would suggest you get to know his doctors sooner than later.   Find out what THEY think about how and where he is in his disease course.   They can probably give you more information to help you determine course of action and future needs than can most any of us.   But, beyond that, you have come to the right place for support and hopefully SOME useful answers you your questions.   Please try not to be so scared or worried about the COPD.    It does not pose many if any drastic and immediate problems or circumstances that require any quick action on your part.   As I said, the forgetfulness is more of a concern in my book, than is the COPD, at this point.   Working here in a rehabilitation clinic for all kinds of patients, I see the many faces of cognitive deficits.  Its VERY scary to see what these folks will try to do, sometimes. Best wishes, Mark

Cardio vs Pulmonary Rehab

Q. The PFT technician? would not give me a copy of the results but I gathered TLC was 125%, Vital Capacity 75% and FEV1  - 31%. FEV1 improved 33% after medication (albuterol) - I gather this is unusually good.  This was first ever PFT so don't have anything to compare this to! My cardiologist is suggesting  cardio rehab rather than pulmonary rehab. Any comments on whether at this stage I should push for a pulmonoligist  as well as a cardiologist and whether pulmonary rehab would be more suitable than cardio?

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A. As one who has been running my pulmonary rehab. program for more than 14 years, I make it a policy that those who have recent significant cardiac events should be followed in cardiac rehab until the cardiac condition is no longer of primary concern.  The two types of programs are worlds different from each other - - - I don't care what ANYONE else says.   (Some folks contend that the two are very similar and conduct them the same, even though they may separate the types of patients.)    You are "volatile" by my definition, with regard to your risks for adverse response or events to exercise.  You need cardiac monitoring until danger of arrythmia is no longer a primary concern.   You need consideration of your heart rate and using it as a limiting factor for exercise load and duration.  Further, cardiac symptoms are going to be more likely, before respiratory symptoms become a concern with exercise.   With pulmonary rehabilitation (contrary to what a lot of folks practice) you DON'T need to worry about heart rate (as a primary limit, up to 140 - 150/min.)   Blood pressure can rise quite high (210/120) and not be the problem for a pulmonary patient it is for a cardiac patient - - - AS LONG AS THERE ARE NO SYMPTOMS to go along with the elevated B/P AND it returns to baseline within a reasonable period of time upon exercise cessation.
 
Your PFT's show significant COPD.  And the 31 and 33 % FEV-1's are NOT CLOSE to being unusual, NOR good.  BUT, they are certainly better than you find a lot of folks on this list live with AND are still quite functional and vigorous!    With the degree of pulmonary disease you have, it would certainly be advisable to have a pulmonary specialist.   I would say that if after 6 months after stent placement, you are not haveing any cardiac symptoms AND are not on heavy heart-rate-and-contraction-controlling drugs, you should THEN switch to a pulmonary rehab. program, where they will be more concerned about your breathing and the consequences of exertion on it as a symptom, than with any response from your heart to exertion.   It should be long enough past stents placement to allow more aggressive pursuit of conditioning. Best Wishes! Mark

Contributing to Decreased Exercise Capacity

Q. I am curious  if it is known whether inactivity leads to the same decreased FFM in people without COPD and/or CHF, or if this FFM is more pronounced in people with COPD and/or CHF?  Or is this a question we do not yet know how to answer? It occurs to me that if it is known that inactivity merely exacerbates an already-present diminishment of FFM in COPD patients,  we would have a very powerful argument for increased availability of pulmonary rehab programs. (These seem amazingly scarce in my area.) Again, thank you for your help! Beth

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A. Hi Beth, We DO know that folks who are sedentary experience muscle wasting in various forms.  This could be measured as an absolute loss in FFM.  BUT, with fairly healthy folks who become deconditioned, their "ratio" of fat to FFM alters more than does their loss of FFM, resulting in a larger ration of fat to FFM.
 
This is only a monir argument in the eyes of the payors for pulmonary rehabilitation.   BUT, some things in process RIGHT NOW are indicating the liklihood of a national policy on pulmonary rehabilitation coverage about to emerge from CMS.   Keep watch for news.   That will cause a LOT of hospitals and clinics to jump on the pulmonary rehabilitation band wagon in a hurry. Regards, Mark

Near Panic

Q. Each morning I take a very slow climb upstairs to bathe.   This morning as I was removing my pajamas with insufficient rest time after climbing I suddenly became breathless.  When it got serious I applied 3 puffs ventoline within the minute, rest for about 5 minutes and recovered.

There was another instance when I climbed a few steps in an outing only a month back.  Same thing happened and same recovery. My fear is the next time 3 puffs may not be enough. I was near panic and my heart was going faster. What should I do if 3 puffs don't work?  Any advice that you can offer will be greatly appreciated.

Oh! I was supposed to be in good condition even after 10 years in COPD. I am not on O2 but on 2 times neb a day with theophylline and mucuflux (cyclidol). Larry

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A. Hi Larry, This may sound counterintuitive to why you think should be, but taking 3 puffs of Ventolin within one minute elapsed time is PART of the problem.   To take more than one puff per minute - - - especially when you are panicked and unable to breathe effectively puts a lot of the drug into your system through absorption in your mouth, without putting much into your airways, where it is needed.   Despite the panicked feeling, you should still try to put 45 sedconds to one minute between each puff, AT THE LEAST.   You should also try to hold each puff for at least 5 seconds - - - not an easy thing to do when you are panicked and having trouble exerting control over your ventilatory pattern.   BUT, it is nevertheless imperative to do so.  
 
Generally speaking, one can take many more puffs of the Ventolin, if that is what it takes to produce an effect.  I hesitate to put a number on that because your doctor should really be the one to tell you what is okay for you.   In practice, we use up to 20 puffs in extreme situations - - - BUT - - - that is usually for full-blown asthma, NOT for COPD with panic.   You might be safe up to 10 puffs.  It cannot be determined specifically by me or others here on the list.
 
I CAN make one suggestion that might be of more help than additional puffs of Ventolin in the "middle" of a crisis.   Why don't you "arbitrarily" take your 3 puffs of Ventolin B-E-F-O-R-E you begin your shower activities? ? ?    Prevention is 100 % better than fighting the crisis.   You know that this happens when you do this activity.  So avoid the problem by preventing it!   You may not need the whole three puffs.  But, even one or two might be prudent. 
 
If you are nebulizng theophylline, you are doing something which is not part of the treatment options used here in the USA.    So I can't begin to sort out anything of consequence with that part of your treatment.    Also, if you nebulize only two times per day, THAT might be another problem.  Maybe you need more, to increase your level of stability.   Check with your doctor on that.   I would also recommend that you have your oxygen measured while you walk around.   You may be desaturating during activity and be in need of supplemental oxygen, at least for activity and possibly sleep. Regards, Mark

Testosterone

Q. I have always been on the thin side. 5 ft.10 1/2 in. and usually weigh about 145-150.Since I was DX'ed with emph. back in Jan.03 I have noticed a problem with keeping the weight I have. Eating enough is hard as it causes breathing problems. I have a problem with getting constipated and bloated and take right much Gas X and similar products and I think that is a factor in the constipation. I use a laxative sometime with good results, too good sometimes. Was just wondering if taking testosterone  would help any? Any suggestions would be appreciated...Rusty  NC

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A. Hi Rusty, It is interesting that you would ask about Testosterone.  Indeed, several small studies have been done looking at the effect of Testosterone replacement/supplementation therapy in those with COPD in regards to increasing lean muscle mass and body mass overall.   (Yes, they have even looked at it for WOMEN, though in half doses--which have produced similar effects of whole doses for men, without masculinization.)   The response has been mixed but generally positive.   It is not an approved treatment for pulmonary disease  so it falls into the category of "off-label" use--and is usually not covered by standard insurance benefits or Medicare.   Also, as it is a hormone and steroid, it does carry attendant side effects and risks.   BUT, having said all that, you might talk to your pulmonary specialist, or one at the nearest teaching hospital facility/medical school, to see if it might be a possibility for you. 
 
If Testosterone is not an option, there are drugs that stimulate appetite.  There is Oxandrolone, a hormone-like anabolic steroid that doesn't seem to pose as much risk for liver damage as do other anabolic steroids.  It has been applied widely in Cystic Fibrosis with good results.   You might inquire about that.
 
In any case, be sure you address your weight loss aggressively.  When we see COPD advance to the point that we observe the progression toward significant decline in body mass-when body mass drops to ideal or less, as determined by normal statistics --survival time drops dramatically AND symptoms increase as well.   At 5' 10" and in your weight range, you are likely below your ideal body mass.    So you don't want to be nonchalant about weight loss. Regards, Mark

Need for Oxygen

Q. Advair has been great for me in that I don't wake in the middle of the night gasping for air and then having an Angina attack. But stairs!!!!! I have to do my pursed lip breathing every 4th stair as I rest. My doctor said my lungs sounded wonderful, but I struggle with getting enough breath to do a lot of things. I think I could do much more with oxygen, but Dr. says I don't need it yet. Think I will talk to him again. Pat H/MA

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A. Has your doctor measured your oxygen W-H-I-L-E you walk for at least 2 - 3 minutes?  If not, then you may indeed be 'desaturating' (dropping your oxygen level) to a significant degree (< 90 %) without it being detected.   Ask your doctor to measure your oxygen saturation while you walk around his office.  Be sure it is continuous for at least 2 minutes, or more.   LESS than that may not detect significant desaturation because of 'lag time' associated with blood low in oxygen leaving your lungs to reach your fingers, where it is being measured.  (Several studies have shown the "average" 'lag time' to be 40 seconds.)   So once up and down a 20 foot hall will not likely get the job done.  AND, a measurement while you rest most certainly will not detect consequential desaturation experienced during exertion.   It has been my observation over the years that a-l-m-o-s-t every person whose resting oxygen saturation is < 94 %, desaturates to < 90 % on exertion.  
 
About your "lung sounds"; many folks doctor's will tell them that their lungs sound 'clear', 'good', 'wonderful', etc., with the meaning being that they don't hear "adventitious sounds" - - - sounds indicating airways that are filled with mucus or fluid or collapsing or the like.   Lost in the good news is the fact that B-E-C-A-U-S-E your "breath sounds" are not indicating any overt problems like infection, etc. D-O-E-S-N-'T mean that you should necessarily be breathing with ease or without discomfort.    Indeed, while it is good news that your lungs do not indicate any acute problems, that says nothing about how easily you should be breathing.
 
Try not to feel bad because you cannot do as much as some folks seem to be able to do.  The fact that Charlotte can climb 2 flights of stairs and you must R & R every four, indicates little more than the fact that her lung disease is not as advanced as is yours 'at this point in time'.   You need to pat yourself on the back that you are doing as well as you are, BUT MORE IMPORTANT, that you are TRYING! ! !   Its good that the Advair seems to give you yet additional wind power to keep on struggling. Best regards, Mark

Prescription for Air Conditioner?

Q. Does anyone know how to get help for a senior who has a prescription for an air conditioner but can't get anyone to fill it. She is on disability, has medicare part a part b. Linda W in NY

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A. Its one of those things that, while a case can be made for medical necessity, because other people can benefit from it and it cannot be considered a benefit exclusive to the beneficiary, they will not even consider paying for it.   The tax break is the best one can hope for.  I must say, I DO like the idea of contacting a local charity, who very well might provide it. Regards, Mark 

FEV1 Info

Q. I have .51 FEV1 16% after taking meds, but I am not on "supplemental" O2. After a small walk through office my sat. came down to 88. Does this sound normal?????Talked to pulm Dr about it but he was already upset with me because I had cut my prednisone from 20mg a day to 10. I hate the stuff. Can anyone explain when we need to go on o2. jerry-ark

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A. Wow, Jerry, That is a question with much controversy about it.   It r-e-a-l-l-y depends upon your doctor and how "agressive" they want to be.   The more aggressive, the earlier you start it.  Medicare's basic rule is when your saturation AT REST is 88 % or less.   There is a second provision that says if you drop to 88 % or less during exertion  and/or sleep AND respond positively to supplemental oxygen therapy, then they will approve reimbursement for it.  Under THAT provision, you would qualify.  BUT, your doctor is the one who must order it.   So, if (s)he doesn't subscribe to the notion that 'earlier is better', you are relegated to waiting until you deteriorate more, OR finding a doctor who WILL prescribe it for you.
 
My personal recommendation is to pursue oxygen therapy, as there is a growing body of evidence that shows that function and survival increase with earlier detection of and intervention for hypoxia (low oxygen saturation - no matter the circumstance).
Regards, Mark

Spiriva

Q. Every time I start thinking that maybe Spiriva isn't doing what I thought it should be doing, I do something dumb that straightens me out fast. I forgot to take it this morning. I went to rehab, walked 30 minutes on the treadmill, lifted weights. I had to leave early to go to the doctor's office for a B12 shot. Came home, cleaned up the kitchen, logged on to EFFORTS, and then realized I hadn't taken my Spiriva. Does that tell you anything? All I had had was my Advair Discus at 7:30 this morning. Jeanette-OHIO

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A. No, Jeanette, it doesn't necessarily tell us anything of consequence.   That one can go a day, even two without their Spiriva, without feeling any drastic changes is not surprising, especially if they have taken it for less than 6 months.   Being long-acting, it takes time to reach a stable activity level and ALSO, time to lose its activity level when stopped.   Try going several days without it and you might find a different response, altogether.   Since you took your Advair, you were also 'closing the gap' to some degree. Then there is the consideration of severity of lung disease and how much difference Spiriva makes at best, in addition to how much change it makes in an individual, versus how loing that change can last when dosing is curtailed, for what ever reason.
 
So, please don't be lulled into a false sense of security that you are no better with the Spiriva and/or you can do without it.   We'd hate to see you 'take a fall' because of a false assumption and lose that vigor you seem to have at present! Regards, Mark

Transtracheal Oxygen

Q. If this procedure is so good, sounds great, why don't more people have it?

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A. Hi Ruth, You ask a very valid question.  My experience here in south Texas is that physicians are very poorly educated about TTO.   Further, they are prejudiced without basis (IMHO), since their exposure and experience are so sorely lacking.    I have queried M-A-N-Y about TTO and have received responses that, were they not so maddening, would be laughable.  By far, the most frequent response I've received is that TTO causes over-secretion of mucus and has BIG problems with plugging.    Therefore, it is dangerous for patients, as they might not get their oxygen delivery, yada, yada, yada.  Of course, our few folks here on the list will dispell that fallacy.   Also, it is next to impossible for the tube to plug up since air pressure would "blow" the plug out of the end, OR, the pop-off on the humidifier would sound, OR the tubings would blow apart because of the pressure build up, in the event that the plug didn't blow loose.   Another is that they are subject to frequent  infections.   Again, another fallacy.   When I have asked those clinicians what/how many they've placed or dealt with I have been appalled with the fact that those who had the negative comments and attitudes about TTO had little or NO experience with it.   Two of the loudest critics here in San Antonio, have never dealt directly with TTO.   
 
On the other side of the coin, unfortunately, the Transtracheal folks have NOT had an 'aggressive' approach to marketing TTO.    Theirs is a difficult position in which to be.   A lot of information gets disseminated through our professional seminars.   Speakers are invited, or contracted, but rarely can walk in and say "I want to give a lecture".   Many companies market and inform professionals about their products by soliciting small groups of professionals and doing an in-service in their hospitals or clinics, with lunch or something similar, that costs lots and Transtracheal hasn't spent the money to cover that kind of ground.    Further, to be effective at marketing, you must have speakers/sales reps who are dynamic and have some degree of charisma in addition to proper knowledge of the product and process.  I have heard several presentations over the years by folks from Transtracheal, and frankly, I've had difficulty staying awake and focused.   Of perhaps ten speakers over the years, one has been able to capture audience attention.   So, the technique has gone poorly promoted for a lot of years - - - at least in my neck of the woods.
 
Nevertheless, I opine that TTO has a very valid place and offers advantages not achievable through other means.   So, I continue to push the concept - - - in those patients who use more than 3 liters/min. most of the time - - - hoping that some day, a few patients will have been insistent and provided the experience for their doctors to be able to (or should I say, HAVE TO) deal with it first hand - - - so that they can see that their fears and dislikes were, for the most part erroneous and ill-spent.   I can only hope! Regards, Mark

 

TTO and Flow Rate

Q. Why would it necessarily need to be someone with a high flow to get TTO? I use a fairly low flow when I am sitting but when I am moving around it has to be increased to probably 3.5. Now, I really don't consider that to be a "high flow" but would still be interested in the TTO mainly to give my poor nose a rest.

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A. Ideally--according to the manufacturer--TTO should be considered when the amount of oxygen flow required exceeds 3 L/min AT REST.   Folks with that sort of requirement, will usually have trouble saturating adequately with 6 L/min--the maximum flow of most all portable oxygen systems that are not "high-flow" systems.   TTO is for the purpose of stretching the coverage of mid to high range flow needs.   It is NOT intended to be for "cosmetic" purposes as a primary requirement.  That cosmetically they are advantageous is a secondary and coincidental benefit, NEVER a primary objective! Make better sense now? Mark

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