Q. Need information I just talked to a friend who has severe asthma, and she told me about a device that filters air while you wear it. She uses it especially when she flies, and swears by it. It evidently is a small device you wear around your neck about 6 inches from the nose. I looked it up on the web just now and find that UCLA has researched the device and found it about 95% effective. I would like to know if anyone else has heard of it or used it. It is called the Air Supply Personal Air Purifier and made by the Pure & Natural Industries at 12402 Nordetra Dr., Norwalk, CA 90650. It sells for about $100 and has a 40 or 45 day money back guarantee. I tend to catch things on every flight too, so would like to know if anyone has had experience with it.They are on the web at: http://www.purennatural.com/8astest.htm. I am going to be traveling quite a bit soon by air. Thanks.

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A. ANSWER: Hi Mel, HOAX ALERT!!!! Does that put it plainly enough? If you read the fine print, you will find that the thing seems to work under the conditions in which it was tested, BUT, those are NOT the conditions under which it functions!!!!. They use a common ploy in having the thing tested by a big name place, then implying that it functions as they claim, as endorsed by the lab, when the way in which they claim it works is not the way in which they had it tested.
If you look further, you'll find NO objective support, just a bunch of testimonials--which are also suspect.

NOTHING placed 6 - inches (and more, on many folks) away from your airway can consequentially influence the air you inhale, in terms of purifying it, or any similar action. I could go into the Chemistry and Physics of it, but that would not help much and I still have 500 posts to get through and clinic to finish.

Save your money - - - - - or, if it is burning a hole in your pocket - - - - - send it to your favorite charity, as it would be better spent.
Regards, Mark 

OTHER MEDICAL HOAXES

Gero Vita International Anti Aging Pills - 
Lung Support Pills (Scroll down to All Drug Products- FDA Report)
Vitamin O, Oxynutrition, Oxyminerals, BiOxygen, and many other names.

PRODUCT SOURCE COUNTRY ***
All Drug Products Gero Vita International Canada 2255 B Queen Street East, Suite 820 4/6/95 Toronto, Ontario M4E 1G3 Updated Canada 8/18/97 MID# XOGERVIT2255TOR FEI# 1000327472
Gero Vita International (may be doing business as) Life Force Laboratories 12/5/97 2255 B Queen Street East, Suite 820 Toronto, Ontario M4E 1G3 Canada FEI# 3001190383
 Gero Vita Laboratories 11/4/97 130A Denison Street Markham, Ontario, Canada L3R 1B6 FEI# 30001146884 ***

NOTE: Gero Vita Laboratories is currently listed on the attachment to import alert 66-41 for their promotion and distribution of "Prostata". Evidence has been provided to FDA which indicates the firm is also promoting and distributing to individuals in the U.S. numerous other drug products (including but not limited to: GH3 (enhances memory); Testerex (enhances sexual vitality); SOD Complex (fights disease causing free-radicals); Medi-Zyme N (anti-inflammatory); Serezac (helps alleviate depression); Lung Support Formula (moistens lungs & breaks up sputum; strengthens kidneys); Vita Potencia (protects heart health; helps control stress); ACF 223 (reduces risk of heart disease, cancer) ;etc.) which would be considered unapproved new drugs.

Why Do Our Feet Swell?

Q. Why is it I, we retain fluids. Why do our feel swell? Why does the whole body swell with fluids? What makes this happen. I just came out of the hospital for this and the fluids were down but now I am the same as when I went in. MY doc tells me it is part of the illness. Please Mark in everyday talk explain what is happening to me, us? Thank you! 

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A. The swelling is the result of a combination of 'sluggish' circulation, salt balance between what's in the blood and what's in the tissues and how much protein is in the blood , relative to the how fast the blood is flowing. It is also is made worse by medications like steroids, which you and others with COPD usually are taking.

The sluggish circulation is the result of your heart failing to efficiently pump your blood. For some folks, the right side of the heart weakens and fails after trying to pump against high resistance of the lungs' circulation. That resistance is increased due to constriction of the blood vessels--as happens when the blood oxygen level falls below a critical level, for most folks, below 90%--or from loss/destruction of pulmonary blood vessels, as happens as part of the destructive process of emphysema. This type of failure is the all too familiar 'Congestive Heart Failure' phenomena. Your doctor is correct in telling you it is part of the COPD process. In fact, it usually accompanies more advanced COPD.

For some folks, the left side loses its ability to pump blood out into the body with enough force. The blood backs up as the result. This is most often seen in more 'primarily' cardiac disease. In all cases of pump failure (right and left heart), because blood is moving throughout the body at a slower speed AND the forces of water pressure, protein- and salt-attraction are thrown off normal balance, water leaks out into the space between the blood vessels, surrounding tissues and cells. The cells, to some degree take on extra water, but by far the fluid is relegated to areas that are neither within the circulatory structures nor the cells --we call it the 'third' space. Because this fluid is not contained or confined, it can relocate throughout the body according to, for instance, forces of gravity. That is how it ends up down in your ankles--and also why we tell you to elevate your feet/legs to coax the fluid to your upper body where it has a better chance to be eliminated/excreted. An additional problem of 'where' the fluid can go is that it frequently collects in the area around the lungs and heart, making it hard to breathe against the weight and pressure of the fluid, but also because the fluid occupies space--and in doing so, competes with air and tissue mass that SHOULD be there. The problem is that no matter where the fluid goes, without improvement in the balance of water force, salt, protein and most importantly, pumping of the blood, the fluid remains in the third space negatively influencing many things.

Treatment is directed at correcting the balances of salts, water force and protein and pumping action of the heart. The easiest to influence is the water force, so you are prescribed medications like Lasix (Furosemide) and other diuretics. They simply make your body shift that fluid away from the third space and back into circulation so it can make its way to your kidneys where it is processed and eliminated. if salts remain out of balance, or are subject to further imbalance, you are given replacement salts - - - most familiar to you would be Potassium. You are also encouraged to control/restrict your intake if Sodium and Chloride. The trickiest and least inviting treatment approach is to try to directly alter the heart's ability to pump. That requires monkeying around with salt balances, electronic influences on the heart muscle and powerful medicines to increase the strength of pumping, all of which create their own set of difficulties and side effects. The flip side of addressing the pump is to make conditions under which it must work as optimal as possible, within the confines of what cannot be changes/improved, hence the popularity of diuretic therapy.

What can YOU do? Follow your doctor's care plan with regard to watching intake of fluid and salts. Make sure you take your diuretic medications and Potassium supplements AS PRESCRIBED. Use sufficient oxygen to keep that influence on pulmonary blood vessel constriction minimized! Mobility is felt to help move the fluid to where it can be more easily eliminated. BUT, mobilizing can be difficult against increased breathing difficulties, and there is disagreement with the recommendation to move, when that usually involves an upright position and gravity influences to shift fluid towards your feet. In my experience, I cannot say that I have seen adverse effects of mobility with regard to fluid shifting, so I recommend moving as much and as best as you can, AS LONG AS YOU ARE WELL OXYGENATED !

Ultimately, good compliance with your prescribed plan of fluid management and communication with your doctor are the best way to find effective control, or intervene more aggressively when necessary. Compliance is the single factor that I have seen make or break effective control of CHF. Folks have come to my clinic in terrible shape complaining about lack of treatment, or ineffectiveness of treatment. On further investigation, I invariably discover that neither the effectiveness nor quantitative adequacy of treatment can be determined because the patient has not done things as prescribed. It is impossible to effectively adjust your therapy if you don't know what works and what doesn't. If after following your treatment plans, your doctor tells you he/she doesn't know what else to do, or nothing more/different can be done , THEN you have what you need to be able to either accept his/her assessment, or seek further help. Regards, Mark 

Pink Puffer/Blue Bloater

Q. Can anybody give me a complete definition of a "pink puffer" and a "blue puffer" Henry from northern calif.

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A. It's "Pink Puffer" and "Blue Bloater". It's one old way that those with Emphysema were distinguished from those with Chronic Bronchitis. It is not used as frequently today as it doesn't adequately distinguish the population it is intended to because of the overlap of the two diseases.

"Pink Puffers" are considered to have more purely Emphysema and as such work hard to breathe, are skinny/raily (because they use up so much energy to breathe, which devours their body mass) and are not hypoxic until later in the disease process, and therefore appear to be pink people who puff hard to breathe. (They use pursed-lip breathing when they are a-puffin!)

"Blue Bloaters", on the other hand are considered to be normal to overweight, sedentary, poorly ventilating and oxygenating folks who have chronic bronchitis. Because of their oxygen and ventilation defects, they often have polycythemia--too many red blood cells--heart difficulties from their advancing COPD, thick blood and hypoxia (low oxygen level) and don't seem to work too hard to breathe (as long as they are sitting still) and don't seem too bothered by the derangements.

Because these characteristics don't apply well to so much of the COPD population, and because the terms don't have great socially acceptable value, they are avoided most of the time today. Many folks with COPD have components of both Chronic Bronchitis and Emphysema and do not resemble either of the two terms with regard to the classic descriptions as they appear in our textbooks. So, because they are not very helpful, we tend not to use them much any more. Regards, Mark 

Flutter Device/Blowing up Balloons

[Comments] Hi folks, it's me again, In my haste to send my message about the Flutter Valve, I failed to include that, although my studies and demonstrations did not show it to perform reasonably as specified by the manufacturer, in terms of pressures generated and that it is not a suitable 'replacement' for percussion and postural drainage, there are many reasons that it CAN be effective, as a few of you have given testimony to. Simply performing the deep-breathing and the 'gentle' vibration that does occur, may indeed help some of you raise your secretions. I am not empirically convinced that the amount raised and effort required to raise them is 'significant' from a statistical standpoint. But, I won't argue with success. If you feel it is helpful and are happy to pay the purchase price, more power to you! Anything to help the cause. It certainly won't hurt you - - as long as you keep it clean (to keep from inoculating your self with unwanted pathogens) and properly functioning. Regards, Mark 

---------------------------

First, It IS safe to blow up a balloon. I realize there are an awful lot of therapists, physicians and other health care professionals running around with stern warnings about blowing up balloons and/or blowing out too hard and "COLLAPSING YOUR LUNGS". - - - - - - I have one word to answer that - - 
- - - - NONSENSE!

Shortness of Breath

Q. Maybe you can answer a question for me. I am a member of two lists for COPD and I've read a lot about people being short of breath. Everyone seems to know what this means and they never seem to write in detail about it. I've been an athlete much of my life and I talk about getting "out of breath" or "winded" - not "short of breath." To me, this is a natural, normal thing and is the result of a lot of physical exertion. If one is in shape they still get winded if they exert themselves enough. And if one is out of shape they usually get winded more easily. Does SOB refer to these situations?

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A. Hi John and Folks, Both John and Tom make some very good points which I think serve to 'frame' that problem which s creates 99% of the difficulty you contend with living with emphysema/COPD. It is the framework upon which I base my lectures/discussions with the folks in my rehab. program when trying to put this problem into perspective. It is also of critical importance in terms of the need to understand if one is to succeed in truly 'rehabilitating' themselves, whether through participation in a pulm. rehab. program, or undertaking the task in another venue.

One of my points of difficulty with how we as medical professionals exacerbate the difficulties that you as sufferers have is in our approach to instructing you about COPD symptoms and how to deal with them. Indeed, too often, we evaluate you, find that you have COPD, then proceed to 'shoot you --and ourselves--in the foot' by counseling you about the breathing troubles that go along with your disease, the result of which is to turn very n-o-r-m-a-l responses into worrisome s-y-m-p-t-o-m-s. Suddenly, you are cautioned to avoid over-exertion, excess challenge to your breathing, make increasingly frequent stops of activity to "catch your breath", and the list goes on. No longer are you 'a-l-l-o-w-e-d' to get winded as a n-o-r-m-a-l and expected consequence of exertion. Indeed, windedness is now a "s-y-m-p-t-o-m" and you should avoid it!

To make matters worse, those around you--who care about you--who don't want to see you suffer and in discomfort --begin to intervene in tasks you attempt which challenge your breathing, doing increasingly more physically challenging activities for you, while increasingly, you sit around getting weaker and resultantly, more symptomatic.

Then someday you find that you can't do A-N-Y-T-H-I-N-G without getting inordinately winded/out of breath/breathless, including simple things like getting out of bed and walking to the bathroom.

If you are fortunate, your doctor sends you to a pulmonary rehabilitation program where--as miracle workers--we are supposed to attempt to reverse this progression which sometimes is not unlike that of a six-foot snowball rolling down a mountain, growing as it goes! But, through YOUR shear determination and--I'll call it, "fortitude"--we frequently are able to help you return to an amazing level of function and wellness, not because we get you breathing any better--but rather--because we are successful in helping you to change your 'perceptions' and 'attitude' about what is and is not alright, acceptable, safe, healthy, etc., etc. about breathing related responses to exertion.

Indeed, after considerable and successful efforts in rehabilitation over m-o-n-t-h-s, the "measurable" changes we see in the 'dynamics' and 'mechanics' of your breathing are insignificant, and pale in comparison to how you learn to endure and persevere in the clutches of inordinate windedness. You find that not only are you NOT going to 'collapse and die' any minute as you might surmise--and indeed feel like doing sometimes--but that you can go on and do one heck of a lot--more than you had any idea possible.

How much one can improve is determined more by their own drive, determination and even 'anger', among other things. Individuals differ in their ability to tolerate discomfort and that is a key determining factor in successfully overcoming the limiting influences of windedness/breathlessness/shortness of breath. The fact that one may now be stuck in bed, weak and sickly means little in terms of potential. Severity level of disease does not 'necessarily' dictate limits of predictable improvement. I have seen some truly breathtaking (pun unavoidable) improvements in folks who 'predictably' shouldn't have been able to improve much , if any, at all!

In the end, a lot depends upon HOW you perceive the difference between "windedness", "breathlessness" and "shortness of breath". WHERE you see yourself in the progression of 'normal response' to 'symptom' goes along with it. After that, being able to perceive yourself overcoming the negative influences of breathing work --and having a reason to do it--determines whether and how much you will improve as you get your self moving again. These are things we as professionals can foster and assist you with, BUT, CANNOT do FOR you, much as we'd like too. Best wishes to you all in your quest to move and breathe!!! Regards, Mark Mangus

FEV1 and Oxygen Use

Q. How come some people with higher FEV1 than 20% are on O2 and I am not?

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A. My FEV1 is about 20% and I am not on O2. My sat was 95 last week at rest. How come some people with higher FEV1 than 20% are on O2?

Folks, I thought I'd offer this attempt at a more complete reason 'WHY' and define/explain the WHAT of emphysema, a little better while I'm at it. There is NO necessarily direct correlation between FEV-1 and the ability to 'oxygenate' (I define 'oxygenate', as ability to transfer oxygen from the air in the alveoli [air sacs] to the blood plasma). Further, 'ventilation' (defined as the movement of a volume of gas [air] into and out of the lungs) has insignificant influence upon oxygenation until it approaches extremes of inadequacy. In other words, you can be "breathing" very POORLY, but if there is adequate oxygen in the air you breathe in relation to your ability to transfer it through the membrane that separates your alveoli from the blood flowing by it, then you can have perfectly adequate oxygenation, despite poor ventilation. 

This would be evident by presence of an elevated carbon dioxide level, but a relatively normal oxygen level, if a blood gas were to be measured. Emphysema is a disease characterized by the destruction and loss of lung tissue. In particular, what we call 'terminal conducting airways' and 'alveoli' are directly affected. To best picture what happens, imagine a bunch of grapes on the vine. The vine, represents the bronchial tubes ("conducting airways"). Now imagine that instead of being many 'individual' grapes acting 'independently', each grape shares a 'common wall' with those adjacent to it, so that what you have in the end is a bunch of individual, yet inter-connected grapes. This is pretty much how your alveoli relate to each other, forming each lung unit then lung segments and so on up to the lung as a whole. In emphysema there is destruction and breakdown in two ways. First and foremost, the individual, yet inter-connected alveoli lose more and more of the 'common walls' that separate them. The end result is like those many grapes 'coalescing' (blending, merging) into one big grape. Second, further damage causes loss and destruction of the conducting airways. (A third way there is destruction in emphysema is through loss of blood vessels and circulation, but at this point, I am trying to describe the just the tissue destruction.) When you take into account the effect of both kinds of damage occurring, it is not hard to understand why it is so hard to effectively 'ventilate', and how the 'air-trapping' that you are told about happens. Again, to picture the trapping part, imagine that you only have the one 'skinny, little stem' (bronchial tube) through which air must pass in and out to 'ventilate' that one 'big grape' (alveolus). You only have enough opportunity to breathe in your 'normal' breath, in pretty much your 'normal' amount of time. The amount of "fresh" air you are able to take in to 'mix' with the huge amount of air contained in that one big alveolus is very small, therefore, unable to make a big difference in the quality of the air already in the big alveolus. To picture this further, think of a balloon. When you first begin to blow it up, a little bit of air goes a long way to make it bigger from one breath to the next. Now, as you make that balloon bigger and bigger, it only grows a small amount with each breath - - - even though ALL of the breaths you have blown into it are the same size. Normal lungs - - alveoli - - would equate with the balloon, when you first blow it up (except for the point that alveoli do not 'collapse' between breaths, but always have 'some' air left in them). Lungs with emphysema equate with the big, inflated balloon.

The last point is that depending upon how widespread the destruction and over-distention is throughout your lungs, will determine the degree of disturbance in your 'ventilation'. But also figuring into the equation is the effect of all those over-distended lung units pressing on the blood vessels moving blood through your lungs and the loss of blood vessels to the structural changes that occur when the many individual alveoli become one big one. And finally, the circulation can be disturbed further by the presence of a low oxygen level in your blood, which acts as a stimulant for the lung's blood vessels to constrict (narrow). The more disturbed the circulation is going through your lungs, the worse your ability to exchange carbon dioxide and oxygen. On top of the disturbance in exchanging gases, is the effect upon your heart, in that it has to pump HARDER, against more resistance, to fewer blood vessels in the face of constriction. This ultimately causes the heart to fail against the increasingly difficult workload. There are different ways in which emphysema develops and is present in different people. For some, the damage is evenly spread throughout the lungs. For others it occurs inconsistently throughout the lungs, as with the formation of 'blebs' (bubble-like structures), and in yet others, large areas such as segments or lobes can be destroyed. The type of damage and destruction you have determines how and to where air most easily moves when you breathe and influences the points made in the next paragraph. Some have said that the diffusion study determines whether you need oxygen or not. That is true only if you can move enough air into and out of the lungs to provide for an accurate diffusion measurement in the time allotted for making the measurement. In emphysema the problem is precisely that you CANNOT move enough air into and out of the lungs and time required to move air in and out is greatly increased. On top of that, WHERE the air goes once it is in your lungs is of consequence. You must be able to disburse ('spread') the fresh air you breathe in EVENLY throughout your lungs for diffusion measurements to be meaningful. In emphysema, we know that air is disbursed Unevenly throughout the lungs.
This means that we cannot easily measure diffusion, and that we have to look at the other 'major' measurements of the PFT to be able to determine what meaning to give diffusion test results. To sum it up, you can have very poor air movement as indicated by very low FEV-1, and even very low measured diffusion, and still have adequate ability to oxygenate. By the same token, you can have a relatively higher FEV-1 and under many circumstances, adequate diffusion measurements and still have very poor oxygenation. As you can see, there are many different factors which 'add up' to the end total effect. They differ to varying degrees in each individual according to their particular emphysema changes and the presence and influence those factors that contribute to having low oxygen in their blood. Regards, Mark

[Additional Information] What is the relationship (if any) between your FEV1 percentage and the need for oxygen?
Although the ATS (American Thoracic Society) has posed a system to classify lung disease stages in terms of 'severity' according to FEV-1 %, and further, they have posed tying the recommendation of oxygen administration to a critical percentage of FEV-1, one major reason that their proposal has not been accepted and implemented is that they have not been successful in establishing a 'necessary' correlation between FEV-1 and need for oxygen. Exemplary of this is the MANY folks running around with FEV-1's less than 30 % who do not demonstrate clinically consequential desaturation of their oxygen (to less that 90 %). On the other end is the MANY folks running around who have FEV-1's greater that 45 %, but desaturate significantly requiring oxygen therapy to correct their hypoxia. So essentially, the answer to your query is 'at this point in time, after extensive investigation, there doesn't appear to be such a relationship'. Regards, Mark 

What is a CPAP or BiPAP?

A. The acronyms 'CPAP' and 'BiPAP' stand for Continuous Positive Airway Pressure and 'Bi-level' - Positive Airway Pressure. BiPAP, incidentally is a registered/protected term owned by Respironics, Inc; makers of some of the earliest machines and accessories for these therapies. Therefore, as difficult as we find it to do, we must be careful in what context we use the term "BiPAP", as they have been known to litigate for infringement. They were the first to introduce 'bi-level positive airway pressure', the term we most often use, which is NOT protected.

To begin with, Positive Airway Pressure breathing seeks to 'augment' the user's breathing efforts to improve their ability to achieve normalized ventilation. It has also been found effective in helping to maintain patency (open, un-obstructed) of the upper portion of the airway. We think it does this through at least two mechanisms. One mechanism is through simple physical 'splinting' such that the soft palate (behind the 'roof' of your mouth, where your throat begins) is 'lifted' off that part of the tongue. The other mechanism is neurologic, in that there is thought to be some 'stimulus' by way of the nervous system to keep the tongue from closing off the airway.

There is a distinct difference between the two therapies. CPAP provides a single-level of constant pressure against the airway and is used to treat folks who need the benefit of 'airway splinting' and stimulus to keep the tongue from blocking the oral, or 'upper' airway. It is applied as a means to reduce or prevent snoring and periods of 'apnea' (no effective breathing)
in folks who have been diagnosed with OSA--the acronym for Obstructive Sleep Apnea. As a single-level pressure device, it exerts a constant pressure against which the user breathes during both inspiration and expiration (synonymous with 'inhalation' and 'exhalation')--or, throughout the entire 'respiratory cycle', which is defined as one inspiration plus it's corresponding expiration.

It is usually applied using either a small, soft mask which seals over the nose, or another apparatus with two small cone-like attachments, called 'nasal pillows'. Both devices are held in place by one of several choices of 'head gear' - - a series of straps assembled like a harness, or a 'cap-gear', similar to the old bathing caps, but made of much lighter cloth materials and much more comfortable, too.

There are conditions for which single level positive airway pressure is not effective, and some cases when folks with conditions that do respond to single-level positive pressure cannot find comfortable tolerance of CPAP. This is where the role of BiPAP comes in. There are several ways in which BiPAP may be applied. There is a 'spontaneous' mode (only the user's breathing efforts 'trigger' the machine to cycle), and depending upon the particular machine used, along with its particular features, there are other modes with combinations of arbitrary ventilatory support at parameters selected by the physician, according to the patient's needs and tolerances, or according to the desired benefit the physician wants to exact. These other modes can be set such that the machine will cycle between pressure settings in coordination with the user's breathing efforts, or may be set independently of (but usually to synchronize with) the user's breathing efforts.

By definition, bi-level PAP is distinct from CPAP because there are (two) different pressures imposed upon the airway during the inspiratory and expiratory phases of the respiratory cycle. Most often, a higher level of pressure is imposed during the inspiratory phase so as to provide support for achieving a deeper inhalation. When the inspiratory cycle is finished and the user is ready to exhale, the machine is triggered to drop the pressure it exerts to that level which is selected for the expiratory phase.
Bi-level PAP, therefore allows the selection of an appropriate, but different pressure to help the user achieve a deeper breath during inspiration, than that which is needed to keep the airway splinted ('patent', open) during expiration. Bi-level PAP may be applied using the devices as described with CPAP and more. In some cases, it is being employed connected to 'artificial airways' such as tracheostomies.

As mentioned earlier, positive pressure ventilatory support is employed to help overcome the difficulties of obstructive sleep apnea. It is also used to improve various conditions that have 'ventilatory insufficiency' as a component. More recently, bi-level PAP is being shown to help improve energy levels, sleep and possibly even gas exchange in folks with advanced emphysema and carbon dioxide retention. However, the jury remains out as the evidence is still very anecdotal and obtaining objective evidence is difficult and will require considerable time. Regards, Mark
_________________________________________

[Comments] Some Tips on Using a CPAP

Hi folks, One point I failed to include in my earlier explanation about CPAP and bi-level PAP was that, as already testified to by some through this list, it IS a very effective therapy for many, especially for those with OSA.

BUT, the caveat is that for those who must use it, it takes some getting used to. Indeed, for some, it takes considerable getting used to! It is totally 'unnatural' and is often not applied in an optimal manner. In fact, the major reason these therapies fail is because the user cannot acclimate him/her-self to the apparatus. Beyond that, poor support and unskilled, insufficiently knowledgeable resource persons run a close second.

With that said, I would offer a few pointers and urge those of you who find yourselves in need of PAP therapy to :
(1) Give yourself 'plenty' of time to overcome the initial strangeness and discomfort/nuisance of the system. For some, this can take up to weeks.
(2) THE most common error in application (in my experience) is improper placement of the mask - - more specifically, applying the mask too TIGHTLY upon the face. Indeed, the mask should 'ride' on your face with only enough pressure against your skin to keep it from leaking during the highest application of pressure you use. The mask pressure should NOT produce discomfort, redness or any other untoward effects. Just remember, "TIGHTER is NOT better!"
(3) There are many types, brands and sizes of masks available with a myriad of features to enhance achieving a proper fit with a minimum pressure requirement. Insist that your supplier properly 'size' you and choose the most appropriate brand and type of mask for you. Raise h - - - if they brush you off with; "Well, we use only one (brand, type, size, etc.) mask for all of our patients." - - or - - "We can't get another (kind, type, size, brand, etc.) mask for you." If you get that kind of response and can't get them to accommodate you, find another company to deal with. If you do not have a choice, complain to your doctor and managed care provider.
Remember, if they don't know about such a problem, they can't correct it.
(4) Some companies have been known to charge clients additionally for masks and nasal pillows beyond those initially placed, as if it's YOUR fault THEY made an unsuitable selection. If your supplier attempts to do this, again, raise h - - - with them, your doctor and insurance provider, if necessary.
(5) Keep the mask (or pillows) and headgear CLEAN. Wash your headgear as often as necessary according to the oiliness of your hair and how quickly you soil it. If you 'drool' a lot and it gets on the headgear, wash it frequently. I used to recommend washing the headgear in the washer with your clothes. However, the Velcro used in most can tear up your other garments and can get torn up BY the other garments you wash with it. Also, machine washing and drying can degrade the headgear more quickly than hand washing and air drying. Since hand washing and air drying requires little effort, if you can do it, I recommend this method over machine wash & dry.
(6) Clean DAILY, the portion of the mask that comes in contact with your skin. Mild soap and water is certainly adequate. For easier maintenance, you can use 'baby wipes'. They have alcohol to cut through the oil deposits on the mask after use, and glycerin to help prevent drying of the mask material. Then soap and water cleaning of the WHOLE mask can be stretched out to once or twice per week. If you are feeling bad or have an infection, you should wash it well EVERY DAY to reduce the possibility of self-contamination which can perpetuate or worsen your infection. When you wash your mask, follow rinsing with a soak in a solution of 1-part vinegar and 3-parts water for thirty minutes as you do with your nebulizers. Your hose does not require such frequent cleaning, but it won't hurt to clean it more frequently than every two to four weeks.
(7) Before applying your mask each night, wipe your face with a baby wipe to remove any oil build up and to reduce the bacteria on your skin. Even if you wash your face before retiring, it is often very helpful to precede mask application with such preparation. (No, I don't own stock in Proctor & Gamble, or other similar companies, BUT, if everyone will agree to buy a certain brand, I'll consider investing!) Keep in mind that the most common cause of skin irritation with PAP therapy is poor hygiene and apparatus care.
(8) When first beginning PAP therapy, if you have trouble sleeping through the night, or find yourself unable to fall back to sleep after awakening during the night, don't fight it! Put the PAP therapy aside for that night and try again the next.

Let me close with the encouragement that CPAP and bi-level PAP are extremely effective therapies when you get past the initial stage. They certainly are more desirable than surgical intervention and other potential alternatives.
With patience and perseverance, as well as a good support resource, you could be surprised at the benefit you reap. As Toni from Oregon has found, you can sleep like a baby. I've been told by numerous folks that they didn't realize how badly they had been sleeping until they got those FIRST couple of GOOD nights sleep once they got used to their therapy.

(Additional information on Masks, etc.)
here are some more suggestions for masks and nose pillows;
http://www.montagemed.com/Products/ResMed.stm
http://www.montagemed.com/Products/NellcorPuritanBennett.stm
http://www.montagemed.com/Products/Respironics.stm
http://www.cpap.net/adamcircuit.htm
http://www.cpap.net/mirage.htm
http://www.cpap.net/goldseal.htm

Here is some input for adjustment problems
http://www.sleepedu.net/forums/apnea9/messages/207.html

Best Wishes for PAP-therapy Success, Mark Mangus, RPFT, RRT, RCP Respiratory Care 

[Comments] Medicare reimburses oxygen equipment providers for two 'types' of service. They pay for the 'stationary' equipment - - that which is used within your home - - - and for portable equipment. The 'allowable' amount is set at $228.80/mo. for 1-4 liters 'prescribed' flow. For >4 liters flow, they increase the allowable to $343.82/mo. For portable equipment, the allowable is $35.96/mo. Of course, all this is subject to their rule of actually paying 80 % of the allowable. You, or your supplemental plan are liable for the balance. Companies who accept Medicare assignment may not bill you for more than the Medicare allowable. This means that once the total of the applicable amounts above have been paid, they cannot bill you for additional amounts.

Medicare pays a company to provide oxygen service to cover ALL--I repeat--ALL of your supply needs, regardless of type of equipment. If you use liquid oxygen (LOX) that covers 1 lb of oxygen or 500 lbs of oxygen. If you use a concentrator and compressed cylinders, that covers 1 cylinder, or 100 cylinders per month. If it costs them more than their income to provide you the service, then they lose money on you. If it costs them less than what they receive to provide for your needs, they have made money. Finally, Medicare does NOT require a company to provide any specific kind of oxygen - - - equipment, or service, only that they comply with the physician's prescription and meet your needs at least minimally. Those minimal needs as defined by Medicare are: (1) you must have a source of oxygen able to deliver the prescribed flow AT ALL TIMES within your home.
(2) If you have portable oxygen, it must be prescribed specifically (independent of the order for the stationary equipment) by the physician. Here is where the snags occur! Medicare defines 'Medical necessity' for portable oxygen as that which is needed to provide for your needs for 'necessary' travel, which they exemplify as 'to and from church, doctor appointments and the grocer'. They do no provide specifically for recreation or other activities.

Providing LOX is costly for a company in several ways. The equipment costs them thousands of dollars to purchase and maintain as opposed to a little over a thousand for concentrators and cylinders. LOX requires on average, weekly visits to refill at a cost that includes the material AND the cost of the driver and truck, not to mention permits, etc. Concentrators can reasonably be placed in homes with no maintenance to speak of, or need for visits to check their function any more often that once every month or two. Necessary incidental visits can be controlled by how many reserve cylinders they provide and how fast the cylinders are used.

Now, if you are the company, which type of service would you be inclined to push? It's not too difficult to figure out. To make matters worse, reimbursement for oxygen was reduced by 30 % and then 5 % more on Jan 1,  1998 and Jan 1, 1999, respectively (based upon some very shoddy information, in MY opinion). This opened 'Pandora's box', as companies scrambled to assess their positions and ability to continue to provide service. For many companies, oxygen reimbursement constituted a staple of their earnings. The reductions have literally put some small operations out of business, while causing others to reduce and restrict their services.

The reality is that today, only the companies serious about providing oxygen service are continuing to thrive. Hangers on and some smaller but dedicated and capable companies do not currently offer LOX, dealing only in the less costly, and less risky too, (but technically adequate) concentrators and cylinders. Quality of service is only as good as the conscience and policies of the providers.

Bigger companies have changed the way they provide their service too, in the interest of reducing costs. Those that provide LOX often put MORE equipment into the users home, placing a concentrator for stationary use, and LOX for portable needs and back-up against failure. This serves to reduce their refill visits to every two to four, or more weeks. As with the smaller companies, quality of service is likewise as good as the policies and conscience of the staff and is influenced by corporate support--or lack thereof.

The questions before those who need to use oxygen are: (1) Where do I live? (2) What needs does my lifestyle present? (3) What company can best accommodate those needs? and (4) How much is the company I choose willing to provide with regard to what they MUST under Medicare requirements and I would like to accommodate the lifestyle I choose. The answers to these questions will usually result in the best choices in companies to potentially meet your requirements as well as the best equipment selection. Of course, if you are with a managed care provider who has contracts with specific companies, your choice in both who to deal with and what equipment they provide may be severely restricted, potentially negating everything I said earlier in this paragraph.

If you live far from the provider, and/or in an area where power loss is frequent and/or prolonged, a concentrator may be impractical, and potentially dangerous with regard to what failure provisions are made. If you are also delivered a gaseous supply that will predictably cover your needs until service can be restored, you should be okay. I use a 24-hour supply as a rule of thumb recommendation. Occasionally, the wise thing to do may be to provide a stationary unit of LOX as a back up, whether for portable use as well, or just as a back up, while a concentrator provides the bulk of your in-home needs.

If you are active, or plan to be--and especially if you plan to travel --you should discuss that with your prospective company. Find out what kind and amount of support they will give you--and especially if they will charge extra for travel accommodations, or excessive use. (I know that earlier, I said that they had to provide for all of your needs "1 cylinder, or 100 cylinders" --but, Medicare stipulates they must only provide for your needs "minimally". There is a provision under which the provider can appeal to the intermediary [the regional payer] and obtain permission to restrict unnecessarily excessive or wasteful use or be permitted to bill additionally for it. This RARELY happens, more frequently is idly threatened, and is difficult for the provider to pursue. But, be reasonable.) Ask them specifically what travel services they may accommodate/offer. Are they a national company with sufficient branch offices in locations you might travel 'through' or 'to'? If not, are they an independent affiliated with a network that reciprocates service for little or no cost.

Finally, the type of equipment you choose will be determined by your portable needs and desires. LOX is nice as a stationary supply in your home because it makes no noise, generates no heat and burns no electricity. You don't have to sit home waiting for tanks to be delivered, but instead are able to snap your portable unit onto your base and fill up and go. You also are generally able to receive up to ( and in some cases, more than) 6 liters-per-minute flow. Last but not least, the oxygen is 99.999...% pure.

Now for the downside. You do have to be there on delivery day which may come frequently if you use a lot. For some, handling and refilling the portable unit presents many less than fun 'adventures' (like freezing to the base unit, valves sticking open, causing loss of the LOX, not to mention danger of cryo-thermal burn - freeze injury, and potential damage to the storage area and materials in proximity to the base unit). Portable units can weigh up to 12 lbs., making them prohibitively heavy for some. You must return to your base unit to refill each time you go somewhere, or restrict your use to stretch your time away, or obtain (maybe even at your own expense) a small base unit to place in your vehicle from which to refill your portable. Without a mobile supply, your 'half-time' away from base, or how far (long) you can go before you must begin your return can potentially be severely short.

Concentrators provide up to five liters-per-minute flow, but of sometimes considerably less than 96 % purity. In actuality, this is not of as great a consequence as the psychological impact of knowing that it is of less purity than LOX. As long as the purity is >85 % the difference is essentially inconsequential for MOST people. They are reliable and will work 24/7/365 for many years-- five, on average. They don't need much in the way of monitoring and maintenance.

The downside is they use considerable electricity ($1.00/day was estimated  - pretty close!), generate heat (even the 'cool' ones do - they just have better dissipation and disbursive mechanisms, but they ALL have large compressors which are responsible for generating the heat), make a lot of noise and require a separate system for portability.

Many companies offer only E-cylinders as back-up and for portable use. Worse yet, some carry only steel cylinders which can make a set-up easily weigh 30 lbs! Ideally, a smaller size Aluminum cylinder in a carry pack with a suitable conserving device is preferable. It is also often more economical for the provider, as it avoids the obligatory waste that occurs with continuous flow systems (which can be up to 75 % of the contents, if you do very good, prolonged exhalation, pursed-lip breathing!). Cylinders as a portable oxygen source increases mobility in that you can carry up to a considerable number, increasing your time away from base. To travel, you can carry your concentrator and extra tanks with you on the road.

What ever system and accompanying equipment you end up with, must be ordered by your physician. If you have a choice, take advantage of it. Choose the company you deal with based upon what they are willing to do to accommodate you. Insist that your physician order what is most suitable for your needs, not what the company dictates they will provide. Make your choice an informed and rational one, so that what you end up with you will be satisfied with. Mark Mangus, RPFT, RRT, RCP
Respiratory Care Practitioner in Pulmonary Rehabilitation

Q. I recently got an oximeter which I really like.  But it told me something weird.  When I would be extremely Hungry for Air my O2 level according to the Oximeter would be as high as 98.  Shouldn't be Air hungry?  When I began doing pursed lip expelling and mostly expelling,  little inhaling, I found that I became less air hungry with each expiration.  My guess, I was retaining a lot of CO2, and even though I appeared to have lots of O2, the numbers were really reflecting a high co2 level.  Could this be the case RRT's?

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A. Some very good points!!!  The numbers (oxygen saturation and heart rate) on our oximeter reflect just that--nothing more, nothing less.  It is frequently the case that folks with 'air hunger', a.k.a. dyspnea, breathlessness, SOB, panic breathing, call it what you like, find that their oxygen level is normal, or close to it.  That is because the last thing to drive our desire--indeed, demand--to breathe is lack of oxygen. Sure, as our oxygen level decreases ( generally, below 92 %) we become increasingly driven to increase the amount we breathe in response to insufficient oxygen.   But, so often breathlessness occurs in the face of adequate blood oxygen levels.

You are close to the answer when you suspect carbon dioxide as the potential culprit.  Although, we suspect breathlessness of this nature is caused by a combination of factors, we do not have hard data on just what and how and how much each factor is responsible for the overall problem.  These factors include such considerations as the fact that your lungs are 'over'-inflated from the emphysema. There are other factors suspected to play a role in breathlessness, like stretch receptors, baroreceptors and other intricate chemical and physical mechanisms, but we have little measured data to define their role, beyond theory.   We have quite a bit of measured data, and some pretty verifiable theory in the role of over-inflation in breathlessness.

With the over-inflation of emphysema, you frequently are breathing near 'the top' of your lung capacity.  This leaves insufficient room to increase your ventilation, should your metabolic, or physical needs increase.  You get to breathing faster because your brain is telling you you're not getting enough air in.  Yet, the reason is that you've got too much air in there already! That is why you can do your pursed-lip breathing (PLB) and relieve the breathlessness.  The  PLB helps you exhale more air, more efficiently.  As you so nicely put it; you've got to blow out the bad air to make room for the good air.  The more air you can blow out, the more room you make for fresh air to come in and the more you can improve your carbon dioxide level, which in turn decreases your drive to ventilate and improves your level of comfort.

So, go on, work on that pursed-lip breathing.  Rather than blowing up the balloon "HARD", just try to blow it up 'steadily' using the fewest number of breaths possible.  Find out how many breaths it takes you now, and work to
decrease that number over a few weeks time.   Do that exercise 30 - 40 times each day, and in six to eight weeks, you should notice a great difference in your 'wind power' as well as a decrease in breathlessness.

Try blowing a steady stream of bubbles--YES, that's BUBBLES--like your grand-children  love to play with.  That forces you to use controlled exhalations, at a steady rate and PLB.  Better yet, try blowing ONE bubble--BUT--blow just hard enough to inflate it to about 3-inches across.  NOW, blow hard enough to keep the bubble from collapsing in on the ring, BUT not so hard as to allow it to break off the ring and float away.  See how long you can hold it there.  This may sound like kids stuff, but try it and see if you can easily do it.  You might be quite surprised at how hard it can be! Good breathing to you all.  Regards,

Q. I was wondering if anyone has experienced pain in the tops of their feet? I wouldn't call them cramps. I am not taking Theophylline but I have this pain every once in awhile. It is not the pain you would feel if it were bad shoes or cramps. It's just more like an ache that is horrendous. It happens in the middle of the night.

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A. Janice, that is a cramp.. Cramps we used to have BE  (before emphysema)  hey I like that.  think I may keep it.  Anyway, our cramps BE were mild little things in our feet usually from wearing the horrible heels that women wear. These cramps generally occur in a drawn toe or the inner aspect of the bottom of the foot.  These cramps usually lasted a few minutes at the most.  They were usually caused by improper foot alignment in the shoe.

These AE cramps can be in the calf,  the top of the foot, the toes, the sides of the foot,  the whole foot, the fingers or hands.  I even have had them all the way up a leg into the thigh.  That is painful.  And these cramps can last. I have often had them last up to 30-45 minutes.  These cramps are usually caused by low potassium  (sometimes by low calcium).

Q. I am not a medical trained person. I have the conditions described and I have been on prednizone since 1992.

I asked my doctor about this condition and his reply was, "prednisone" as well as some other drugs, will effect the fatty tissue layer under the skin.  This zone nourishes the skin and allows the skin to absorb movement from side to side. With the fatty tissue area gone, a sheering motion or bruise that formerly would have caused bleeding under the skin and been
absorbed into the fatty tissue area is now seen as bleeding under the skin in red marks similar to a bruise."   It is one of those trade off for the benefits received from the drug. I asked if the conditions would improve if I got off prednisone which has always been a personal goal.  His answer was, he has seen some improvement in some patients and none in others, his best guess was probably not."

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A. About those blood spots,  the Beclovent is an inhaled steroid.  It can have some of the same effects as prednisone.  They used to tell us inhaled steroids would not have any  systemic effects  (all over body)  They said the inhaled ones would just work in the lungs and not affect anything else.  They are changing that now and say that the inhaled steroids can have some systemic effects, but not as often or as severe as the pill form of prednisone.

The problem may be weakened blood vessels that let blood leak out too easily. The person who has this problem notices red spots,  "blood spots", or bruised areas on the skin, and often has no idea how it happened.  The mildest tap on the skin could cause a good size bruise.  Often it does not look like a bruise at all, but just like blood that has leaked out under the skin.......(which it has)  Or it can be due to a change in the blood that lets the blood "seep "out
of the vessels even without much trauma.

Oral and inhaled steroids are not the only thing that can cause those blood spots.

The CAUSES are numerous...............Some think that doctors giving different answers to different people about the same things mean the doctor does not know what they are talking about.  The fact is, many things, like this problem,  can have many different causes.  That is why we get different answers from different doctors about what causes them.   They are probably guessing at which is the most probable cause in your own case.  Some of the
things that may cause the easy bruising  are:

1.  Sun damage to the skin and underlying tissues, which includes the small blood vessels.

2.  Chronic systemic or topical steroid use. (prednisone does not cause any change in the platelets.  It causes a weakening of the capillary walls, and therefore, lets the blood ooze out easily when it is hit or damaged in some way.  But the actual blood picture is unchanged.

3.  Not usually in US, but in other parts of the world, scurvy (lack of vitamin C intake) is a big cause.

4.  Vitamin K deficiency   (vitamin K promotes clotting)

5.  Certain inflammatory diseases that may cause deterioration of the small blood vessels.

6.  Certain diseases that affect the platelet count.......and cause decreased clotting.  When there is a problem with platelets, then the blood is said to be "thinned".  Actually, it just does not clump together or clot as easily.  It has lost some of the clotting tendency.  This is usually caused by an actual blood disease or disorder.

7.  Use of "blood thinning" prescription medications....... such as  wafarin or Coumadin.

8.  Possible use of aspirin.  Different sources disagree on this.   In  the case of taking lots of aspirin, the blood does not clot as easily, but there is no actual damage to those small blood vessels.

WARNING:   You should never start or stop any medication that may affect clotting of the blood without your doctors ok.  In other words, if you have this problem with easy bleeding, you should ask your doctor before you even consider adding Vitamin K, or stop the aspirin,  even though these are over the counter medications.  There are very often cardiac or other reasons why your blood should be "thinner", even if it does cause the easy bruising........You don't need better skin if you have to have a heart attack for it.

About  your skin,  the medications we take also often affect our skin...It often gets dry and the dryness makes it feel and look old.  There is one great product that has seemed to help that a lot.  That is the lotions and creams that have alpha-hydroxyl in them.  The alpha-hydroxyl removes the outer layer of dead skin cells and makes the skin feel and look so much better.
These alpha-hydroxyl products are over the counter and come in creams and lotions.

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A. Medicare does not pay for prescription medications.  There are a few cases when a medication may be covered.

1.  Medicare does pay for a limited number of preventive treatments.  These are flu shots, pneumonia vaccines, and hepatitis B vaccines.

2.  Medicare pays for some oral cancer drugs.

3.  Medicare pays for certain drugs for a one year period after organ transplantation.

4.  Medicare may pay for some drugs that a patient cannot self - administer. They do not pay for insulin because a patient or family member can usually administer.  If it is not possible, in an individual case, Medicare may pay or a visiting nurse to come out and administer the medication, but not necessarily the medication.  (see #5 for strange reasoning for this.  They
just don't bend their own regulations easily)

5. Medicare does pay for durable medical equipment and all components required for the equipment to operate. (Oxygen is covered under durable medical equipment)  Durable medical equipment is just as the name implies, durable. Syringes used for injections are not durable, they are disposable.
This is why the insulin is not normally covered. Durable medical equipment may be used over and over. The nebulizer treatment cannot be done without the medication solution that goes into it. So Medicare pays for the solution.

6. Blood is considered to be a medication.......Medicare will pay for blood after you meet a 3 pint annual deduction.

7.  Medicare allows for coverage of other medications when a person is in a Hospice program.  At that point, the Hospice pays for all medications related to the primary diagnosis of the patient.

Wedge Resection

Q. Mark, I am having surgery Aug 18 to remove a suspicious lesion in my right upper lobe.  Because of my emphysema and asthma and the fact that my fev1 is .97, the surgeon has  said that to do a lobectomy would be risky.  He is instead going to do a wedge resection of the lesion and if it proves to be cancer will use what is called a "radiation mesh" over the area where the lesion is taken from.  He tells me that they have done this in over 150 patients and it works quite well.

Do you know of this procedure and it's after effects?  I feel confident in what they are telling me, I just wanted to hear your perspective.  I am told the radiation mesh will deliver a "super dooper" (his words) dose of radiation all at once instead of my having to come in every day for 6 weeks for radiation treatments.  The radiation oncologist tells me that the radiation will be active for about 3 months after which it will dissipate and the mesh will stay in place. I have a well meaning friend as well who is telling me to be cautious and aware that there are long term affects to radiation therapy and I could be in for ongoing "bad colds" and problems.  Is there any validity to this? Any comments would be appreciated. Thanks, Sandy O

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A. Hi Sandy, I have cared for many patients who have undergone wedge resections.   It is a fairly common type of surgical approach to avoid taking too much lung tissue out.  I am familiar with the 'mesh technique' of locally irradiating an area of tissue.  While I cannot claim any authority, I am not aware of any increase in the 'usual'  risks of radiation therapy, those being fibrosis, as the most consequential effect.   Your doctor should be able to explain any and all expectable side effects to you, as you must undergo treatment with the condition of "informed consent".   While there certainly are long term effects to be considered and even "cautious" about, I cannot say that increased susceptability to colds, or other things-- beyond the immediate therapy period--is indeed a real or frequent problem.   I don't think that is an accurate characterization.  Again, I would strongly urge you to put your concerns to your doctor, whom I will bet would be happy to answer your questions and alleviate your concerns. Best wishes for a success outcome! Regards, Mark

 Is this good?

Q. I was Dx'ed with COPD/E in Jan. of 2003.At that time I quit smoking and had my first PFT.... My FEV1 was 33%.A month later a 2 nd. PFT along with being treated with medications my FEV1 was 38%. Today I had my 4th PFT and
my FEV1 was 41%.My medications were not changed. I am still on Advair 250/50 two times a day plus Combivent as needed.I also eat one 10 mg tablet of Singulair every evening. My pulmo says that is a nice improvement and could
be a little better when I go back on OCT. 1st. In Jan. my O2 at rest was 94 and after a normal 3 lap walk around the office course I was at 86. To day O2 at rest was 96-97 and the same walk O2 dropped to 86 but I did 7 laps instead of 3 before it dropped that far. Just normal everyday getting around (no load) I stay around 91 or so.I f I get into some work like carrying in the groceries, running the weed eater  it will drop into the mid 80's and my Dr. says its not something to get shook up about as long as it don't stay there. Meaning that I should keep pacing myself and to stop short of getting SOB which I have learned to do. However sometimes I do get caught and am usually able to recover in about a min. to a min. and a half....Or so.    My pulmo says he don't prescribe O2 unless the O2 readings are at 90 or so at rest or less when walking at a normal pace for any distance.   In your opinion does all this sound good?........Rusty

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[COMMENT] I wish I was in as good of shape. My PFT was 33% before rehab and 33% after rehab. I'm on o2 24/7. 2 lpm at rest and up to 6 while doing any sort of exercise, even walking. On the 6 min. walk prior to rehab, I was able to go the full 6 min. but at 5 lpm o2 flow. After rehab, I actually lost a bit of ground and couldn't quite make the 6 minutes at 6 lpm. I don't feel as though I've lost anything since rehab though. I use my treadmill about 3 times a week and I use a wheelchair in the stores and malls which gives me good upper body exercise. My doctor said that I can't expect an increase of more than perhaps a percent or 2 unless I also have asthma along with emphysema, in which case medication can indeed cause the FEV1 to increase. Dick OH

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A. Hi Dick, According to the best data from retrospective studies of many different studies looking at affects of exercise on lung mechanics (measured by the spirometry portion of your PFT), the data show that no significant change occurs.  Therefore to expect changes in FEV-1 or FVC and other spirometry measurements is misdirected.   What measurable changes have been widely documented are those of O2 uptake/usage and CO2 production.   We see a reduction in oxygen consumption and a reduction in CO2 produced - - - per-unit-of work.    This occurs as the muscles increase their efficiency with regard to use of oxygen and production of CO2.   As a result, they demand less and load the lungs less as they become better conditioned.
This translates into less work of breathing, though  NOT always experienced in the form of 'work TO breathe' - - - a.k.a. move air.   That may seem contradictory, but without going into a technically complicated explanation of terms and definitions, suffice it to say that it means essentially, you can do more with what you have and how hard you work.

I'm surprised and disappointed for you, Dick, that you "lost ground" with your pulmonary rehab. effort.  And to see your 33 %--assuming that is what your FEV-1 is--I am surprised that you say you couldn't complete 6 minutes of walking!   Virtually all of my patients with FEV-1's of 33 % were easily able to complete 6 minutes of walking for the test.   I haven't seen them not do it until FEV-1's were below 20 %.   Even then there were only a few who couldn't complete 6 minutes.   I should also qualify that by saying that they took rest breaks--on the clock--along the way.   (Were you saying that you couldn't walk the 6 minutes without stopping to rest? Or, were you saying that you simply couldn't make it 6 minutes even with rest stops?)

You mention that you use your treadmill three days per week.  How long do you walk?   How fast do you walk?   What else do you do for exercise--especially if you don't use the grocery store and mall as opportunities to walk, even if only using your wheelchair as a 'large walker'? Regards, Mark

Q. I was asked a question that I don't  know how  to answer. I have never seen it discussed. What about plants for COPD patients. I mean potted plants not flowers. My daughter has to move and is overloaded with some really pretty ones. I recall someone saying that some were unhealthy for us.........Esther/Wi Chapter Leader

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A. Hi Esther, Without going through them one-by-one to determine their noxious elements, a few 'rules of thumb' might help you decide which are ok.  For the most part, most popular "tropical" plants are alright--even those that "bloom"--since the pollens they produce are big, bulky and do not get into one's airway to cause trouble.  Most domestic house plants are also okay, even though they might be of blooming varieties.   Perhaps the most consequential consideration is the care in working with those plants and their soil. Pseudomonas is indigenous to soil and will contaminate your hands when you work with it.  Be sure to wash your hands before touching your face.  Cover open sores on areas of your skin that will come in direct contact with the soil.  Aside from that, there aren't many other thinks you would need to be concerned about. Enjoy your hobby! Regards,
Mark

Lung Transplant Question

Q. Going to pulm doctor tomorrow and want to know if I can ask about lvrs and lung transplant. I have 6 people that will donate a lobe and do you think it would stupid to ask about all this when I go  in on my first visit. I want
to know what I can do now while my health is ok and do I have to wait till I'm really down before I can get anything done or do I have to do rehab meds etc before I have this stuff done. Stupid questions I know but am very scared about tomorrow. My daughter is going with me so she can take notes. I have all my stuff wrote down but just wanted some in put. Thanks Beck in DM

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A. Hi Beck, Certainly, ask as many questions as you can to satisfy your curiosity and allay your fears, even though it is your first visit.   My bet is that the doctor will encourage you to go through treatment one step at a time, from the 'least invasive' towards the most invasive.   There is sound reason for "going through the process", rather than skipping steps for what 'seems' convenience.   You don't want to have lung transplant until and unless it is the "best option".  Having it when you are healthy enough not to need it does not necessarily translate into more years of survival.   In order to qualify for each of the procedures-- LVRS and transplant--you need to be at a certain minimum level of illness.   Your doctor can explain the specific criteria for you.  Transplant is not done until you reach a level of severity that it is likely you will not survive for more than a year or two without it AND is based upon your candidacy from other aspects, too. Realize, transplant is NOT a cure, or relief from your problems.  While it can make tremendous difference in your breathing ability and therefore your function and quality of life, it IS in essence, trading one set of problems for another, in that you will have immunological/infection-potential problems after transplant AND will have to take several expensive medications that have their own set of consequences and side effects, like
cancer, for instance. Let us know how your appointment goes. Regards, Mark, EFFORTS Medical Advisory Board

MAC

Q. Hi Mark, I was recently released from the hospital and told that I have something known as MAC.  I was told it was in the TB line but not contagious.  I also was told that the meds can effect my liver.  Do you know anything about this?  Thanks Mary Ellen-GA

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A. Hi Mary Ellen, MAC stands for Mycobacterium Avium Complex, one of the family of Mycobacteria, from which Mycobacterium tuberculosis ALSO comes, though MAC is not as bad as TB.   One doesn't "usually" contract MAC infection unless they are especially susceptible or immunocompromised.   It can cause pneumonia, but is not of the severally contagious type as is M.
tuberculosis.  It DOES require treatment when it is causing infection. There are many choices of drugs and combinations of drugs.  So, without knowing which drugs your infection has been proposed to be treated with, we can't recognize and realize what the implications for your liver might be. Others in the list of choices contribute to renal decompesation among other
systemic side effects.   In any case, the side effects are dose and susceptibility dependent.   You won't know how susceptible or sensitive you are to them until you are treated with them. Regards, Mark

Abdominal Surgery and Lungers

Q. Is it true that having abdominal surgery will almost always leave a Lunger with less lung capacity than pre operation
because breathing deeply causes so much pain, the patient won't do it? Sharon WA

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A. Hi Sharon, It is true that folks who have abdominal surgery have greater incidence of post-operative pulmonary complications for the reasons you suggest. Pain DOES make it harder to cough and breathe deeply.   BUT, that resolves in the greater majority of instances in a matter of days, as the pain subsides and recovery progresses.   It is getting the individual t-h-r-o-u-g-h that period that makes us work  more diligently on those patients. But, for the most part, there is no "permanency" to the pulmonary function difficulties we encounter in that type of patient after surgery. Regards, Mark

BiPAP Info

Q. I have read so many of you refer to bipap, this might sound stupid, but is it