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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