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

Please select topic from list below

Cushings Disease

Q. I know we have broached this subject before, but has anyone on the list developed, or heard of anyone who
developed Cushing's just from inhaled steroid use? - Cat

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A. Hi Cathleen, It is certainly possible to develop "Cushingoid" changes (since steroid use is not considered to give one the actual and full-blown Cushings Disease/Syndrome) from inhaled steroids and a small number of folks have been documented in the medical literature as having done so.   Overall, incidence is less than 1 % of all individuals who take "normally recommended/prescribed" doses - - - that is two puffs twice, per day, but not to exceed 8 puffs per day.   Folks who are prescribed more and/or use more, whether prescribed, or not, have a higher risk.  BUT, s-t-i-l-l, the incidence and risk is too low to report as a likely side effect.

The same can be said about the incidence and risk for folks to have psychotic reactions to inhaled steroids.   In 33 years and thousands of patients, I have had "t-h-r-e-e" who had psychotic or hallucinogenic responses to inhaled steroids, without an accompanying oral dose, such that their total steroid dosing was from an inhaled source. Regards, Mark

Cushings Disease

Q. I know we have broached this subject before, but has anyone on the list developed, or heard of anyone who
developed Cushing's just from inhaled steroid use? - Cat

* * *

A. Hi Cathleen, It is certainly possible to develop "Cushingoid" changes (since steroid use is not considered to give one the actual and full-blown Cushings Disease/Syndrome) from inhaled steroids and a small number of folks have been documented in the medical literature as having done so.   Overall, incidence is less than 1 % of all individuals who take normally recommended/prescribed doses - - - that is two puffs twice, per day, but not to exceed 8 puffs per day.   Folks who are prescribed more and/or use more, whether prescribed, or not, have a higher risk.  BUT, s-t-i-l-l, the incidence and risk is too low to report as a likely side effect. The same can be said about the incidence and risk for folks to have psychotic reactions to inhaled steroids. In 33 years and thousands of patients, I have had who had psychotic or hallucinogenic responses to inhaled steroids, without an accompanying oral dose, such that their total steroid dosing was from an inhaled source. Regards, Mark

Anxiety and Panic Attacks

Q.  What causes these severe panic and anxiety attacks?

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A. Not being able to catch your breath or increase your breathing to accommodate sudden increased demands because of exertion or excitement brings on panic and heightened, difficult to control anxiety. It is again, related to your survival instincts as well as the physical changes of trapped air in your lungs which takes away your "inspiratory reserve capacity" and therefore, your ability to meet increased demand to breathe.

It is because of the physical causes that the most effective tool to break the "attack" and regain composure is found in controlled breathing with emphasis on EXHALATION. It is true that your sensation is of not being able to get enough air IN, but the cause is too much being in your lungs already!

You must therefore work to exhale MORE and reduce the total volume in your lungs and therefore some of the trapped air, making room for better ventilation, bringing more 'fresh' air into your lungs. It is certainly much easier to "talk" about than to do and takes much, MUCH practice.

This is why we recommend you exercise and force yourself to work hard to breathe so that you can master control of your breathing, improving your overall ability to ventilate and ultimately reducing your tendency to experience the panic attacks.
Regards, Mark

Albuterol - Side Effects

Q.  How come I get all shaky when I take Albuterol?

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A: When all of the sites within your lungs are full (saturated) with Albuterol--AND/OR--when you absorb through your mucus membranes in your mouth the Albuterol which impacts and sticks to it, it is absorbed and carried by the blood stream to other sites in your body that can bind with and react to it. Some of those sites exist in your fingers and other "peripheral" (outlying) areas in your body, including your heart. Your heart may feel like it is pounding within your chest and your hands shake.

These side effects, while disconcerting and uncomfortable are in no way dangerous or life-threatening 99% of the time and will subside within 20 to 40 minutes. Certainly if they are not gone in an hour or two, your should seek advice/help from your doctor to be sure there is nothing else wrong to cause or worsen the effects.


Q.  Why can't I keep taking Prednisone? It helps me.

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A: Actually, you CAN keep taking Prednisone - - - and S-O-M-E are so doomed to doing so. The problem is, it has so many side effects with long term use - - - bruising, frail skin, Diabetes, Cataracts, Glaucoma, Osteoporosis, fluid retention, weight gain, shakiness/weakness and more - - that if you can avoid continuous and long term use, you should do so by ALL means possible! 

It makes you feel so good - - - NOW - - - but it makes you pay a high price LATER. Then again, there are times when the symptoms it subdues for you are SO overwhelming and debilitating that it becomes the lesser of the evils and you must roll with the punches.


Q.  How much longer do I have?

A:  No one knows the answer to this until it is fairly obvious to all, including those without medical training! ! Because folks meet their demise with great suddenness, or quickly through critical and rapidly terminating infection/illness, it is unpredictable. For those who just gradually fail, it is next to impossible to say until very late in the game.

Q. What happens if I quit smoking? or
Q.  I have quit smoking, why don't I feel better? or
Q.  What happens if I continue to smoke?

A: You will necessarily increase your chances of improving your breathing and chances for survival. Many folks in the immediate period after quitting experience many adverse occurrences and feelings which may make them question the good to be gained in having quit. BUT, more often than not - - - MUCH more often than not - - - if they are patient, they will come to discovery that they truly DO improve over the long run. NOW, having said that, if one quits very late in the disease process, 'h-o-w m-u-c-h' they improve or whether they feel significant improvement at all may be overshadowed by the advancement of or problems with their established symptoms. Rest assured, if you continue to smoke, you WILL hasten your worsening and demise, not to mention increase the difficulty you experience living with your lung disease during your remaining lifetime!

"End Stage" Emphysema

Q. What is End Stage Emphysema and how do I know when I am there?

* * *

A:  It is a very bad term which is poorly defined and treacherous to use. In MY opinion, when one reaches "end stage" they don't need ANYONE to tell them they have arrived!!! Some define it by numbers--FEV-1 , 25%. Yet others define it as how much treatment you are receiving and how effective it is OR isn't!  All too often it is simply a bad excuse for not wanting to work positively toward maximizing function and quality of life while living with COPD/Emphysema!!!

I recommend avoiding the incorporation of "end stage" into your view of your own disease because it serves NO useful or helpful purpose. You can live a long time (more than 5 years) with an FEV-1 of less than 20%.


Getting worse?

Q. Will start getting worse?

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A: This is a tough one. Some folks cruise along for many years in a steady but very gradual decline that is similar to, but a bit steeper than normal, while others experience spurts of decline that may or may not be associated with exacerbations. Rest assured, the more you move and try to maintain the most vigorous level of function possible, the slower ANY rate of decline can be expected to be!

 Getting Better?

Q. Am I ever going to get better?

* * *

A: In the sense of "getting rid" of your lung disease. What's there is there. HOWEVER, depending upon how poor your condition and function is when you are diagnosed AND how much "intestinal fortitude" you have and can muster up to get you through the reconditioning (e-x-e-r-c-i-s-e) and behavior changes (quitting smoking, etc.) necessary to improve, you M-A-Y see remarkable improvement in your ability to function, tolerate exertion, control your breathing and symptoms and enjoy living despite having significant COPD!


Q. Why, when I walk for a bit and get real short of breath, do I feel like I am going to wet myself?

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A: This is from a combination of reflexes, the first of which is the same as that which makes your nose run (Q 1, above). The other influence here is oxygen. Folks whose oxygen drops quite low (how low, is different for each person) experience this as the result of their body trying to conserve and move oxygen vital organs--heart, brain, kidneys--which leaves insufficient oxygen available for sphincter muscles to remain contracted.

Running Nose

Q. How come my nose runs so much when I exert?  It just flows like you turned on a faucet. Yet when I sit, it dries up?

* * *

A. This, for most folks is the result of a response from the nervous system that is part of the "fight or flight" system of reflexes- the same mechanisms that cause your heart rate to increase, your heart to pound, your blood pressure to increase and your pupils to dilate in response to sudden excitation/fear/fright, etc. Not only may you experience a runny nose, but your sinuses may clear during this phenomenon, making breathing through your nose remarkably improved only to rebound to stuffiness once you relax and return to your resting state.

Generally speaking, you should accommodate this phenomenon, refraining from using sprays or medications to dry up your nose as they will not work during the time the problem is occurring, but may work with a vengeance AFTER the problem has passed!

Six (6) Minute Walk (Test for Oxygen)

Q. Mark, could you list the steps and goals of the walk. If possible the limits of same? I think all the group could use these, if for no other reason to see if their getting what their supposed to. Jack CA

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A. As a 'diagnostic' test the six-minute walk (6MW) is intended to

(1) measure the maximum distance you can cover in six minutes. This includes rest stops as well. It requires a m-a-x-i-m-u-m effort. Therefore, you should NOT hold back on your effort. The test SHOULD be done on level ground, in a controlled environment --A/C, low humidity, etc. It should NEVE-R be done on a treadmill--because--there are three factors at play in determining the measurement and outcome of a 6MW--speed, distance and time. We are 'controlling' for t-i-m-e, allowing speed and distance to be the uncontrolled variables. the results, consequently are TOTALLY dependent upon your effort. If we put you on a treadmill, we control for ALL variables, therefore, we skew any chance of an objective measurement by removing any chance of your total control of the results. There ARE stress tests for the treadmill, but the 6MW is NOT one of them.

(2) assess your breathing pattern, ability, symptoms to determine your ability to control your breathing, how much breathlessness you experience with what corresponding load of exercise and the influence of your breathing difficulties on your psyche - - - anxiety/panic response, etc.

(3) assess your oxygenation to see what changes occur, if any, how they correlate to duration of exertion as well as load. CONTINUOUS pulse oximetry should be accomplished during the 6MW. If you are griping a walker, or other assistive device, a finger sensor should NOT be used, as there will be too much artifact from movement and changes in hand/finger circulation, rendering measurements inaccurate and useless.

(4) with EKG monitoring, we can see if you have any adverse cardiac response to exercise/exertion and/or desaturation. How much and what type depends upon the sophistication of the monitor used.

RESULTS: <100 ft/min.- - - - - - severely debilitated
100-150 ft/min. - - - significantly de-conditioned/debilitated
150-200 ft/min - - - moderately de-conditioned
200-250 ft/min - - - mildly de-conditioned 
Above 250 feet, the 6MW is poorly sensitive, as those distances represent speeds of > ~ 3 mph. For testing at higher loads, treadmills and Bruce protocols, and the like are in order.


Chronic Bronchitis or Emphysema?

Q. There is a basic something that I do not understand. COPD comprises Chronic Bronchitis and or Emphysema. Simplistically CB generates a cough, mucus, inflammation of airways and shortness of breath Whilst E progressively destroys the tiny air sacs that covert oxygen and produces shortness of breath. A basic question. Why are they both listed under COPD when one (CB) is a chronic condition that does not progressively destroy the lungs, but the other actively destroys the tiny air sacs.

* * *

A. Basic question, maybe, but NOT unreasonable! Diseases are classified under the umbrella of COPD and CR(estrictive)PD because of the characteristic changes in "airflow" into and out from the lungs, NOT by the pathologic characteristics that delineate them individually from one another. That is primary reason # 1 and all other reasons are secondary and after the fact.

CB DOES cause permanent destruction of lung tissue by destruction secondary to associated infection and inflammation and replacement with non-functional scar tissue. That scarring is not confined just to the conducting airways (bronchial tubes), but carries over to the "air sacs" to use your term. In this feature, it becomes indistinguishable from emphysema in the definitive sense, hence another reason why they are grouped together under the COPD umbrella. Also, COPD includes, Bronchiectasis and Cystic Fibrosis among others, so is not JUST inclusive of CB and E. Does this make it "clear as mud"???!! Regards,

Loss of Bladder Control

Q. Mark will you please address losing control of your bladder as it relates to COPD. I know that one other time you touched on this but did not expound on it. What is the cause? etc. Many in the group have questions on this as well as myself.

* * *

A. While these certainly are not the ONLY reasons, three possibilities, I would bet, constitute the bulk of the cause. First, since 'ladies' seem to have the problem with greater frequency and degree than 'gentlemen', there is the gender factor to consider in view of the age range most affected by breathing-symptom-related diseases. 

Next, there is hypoxia (deficiency in the amount of oxygen reaching body tissues).  When the oxygen level heads down to the basement, 'peripheral'/non-essential systems receive reduced blood flow/oxygen in favor of preservation of vital/central organ function. Sphincters deprived of oxygen cannot maintain contractile tone and resultantly, relax--sometimes SUDDENLY! 

Next--and this can be coupled with hypoxia for an amplified effect--plain old-fashioned panic/anxiety response can set off the process with hormones/adrenaline/etc. Once the process is triggered, the roller-coaster is headed down the steep track. Each of these has its obvious resolution without the need for my further elaboration. Regards, Mark:>}

Pulmonary Hypertension: Need for Night time Oxygen

Q. Mark I thought of something when you wrote your answer about the swelling that those with CHF have.
I have daytime sats at 91 to 94 and was not on oxygen. I have been treated for Emphysema for the last two years. My daytime sats have changed only a little but I was getting exhausted. My Pulmonary doc kept telling me that I did not have an oxygenation problem. Was sent to a Cardiologist and he discovered that I had PH and a slightly enlarged heart via heart scan and echo. [Mangus, Mark] PH = Pulmonary Hypertension. When I forced my Pulm Doc to find out why I had PH, he did a sleep study.

My sats at night were falling to 82. I went at least 18 months getting worse because my pulmonary dummy did not take my word for what I felt. These people need to know that if they are having continuing SOB in the AM they need to ask their doctors for a sleep study. I am now on nocturnal oxygen and feel 100% better. I am concerned about how many of these people are getting PH and CHF far before need be because of sloppy doctor care and low night sat rates. Can you please address this? Thanks Sharon Young

* * *

A. YOU have addressed it nicely. When I read your post, my response was "YOU rest MY case!" It is because of experiences like yours that I a-l-w-a-y-s preach measurement of oxygen saturation during walking. When done, very few who truly have oxygen deficits will be overlooked, or go undetected. If a walk test is inconclusive, then an overnight saturation study should be done.

In your case, were it ME measuring the 91 - 94 % saturations--especially assuming they were done at rest--I would be suspicious that you desaturate below 90 % with activity and would check you right then. It upsets me that physicians get those kind of data and are complacent about it. It further upsets me that there are some who argue that it won't hurt you to drop to the mid-80's every time you move, or worse yet, that it is somehow "GOOD" for you! And it makes me downright crazy when those physicians are 'Pulmonary Specialists'!

You asked me to address this. Indeed, I have addressed it--numerous times--and will continue to as long as the problem persists and treatment approaches don't change. What you have related in your own experience is exactly the sequence of events I continue to warn about both in speaking and writing to folks, lay AND professional. I contend that there is good theoretical evidence to support the argument that uncorrected frequent/recurrent and prolonged desaturation, like what you experienced profoundly hastens the development and advancement of cor pulmonale and/or COPD-related CHF. As such, it may easily shorten life, function and quality of life with COPD, by many years. The problem is, there is no easy (and ethical) way to study my contention AND it is very 'time-intensive' and 'population intensive', in that a L-O-T of people would need to be looked at over a L-O-N-G period of time, and some would have to be denied potentially life-altering benefit to prove the point. At every opportunity I get, I present the question of the influence of exertional desaturation and what should be done about it. Indeed, I brought it up in discussion after one of the lectures at our national meeting in Las Vegas. Dr. Brian Carlin, a prominent pulmonary specialist from Pittsburgh agreed that we have little and poor hard data to answer this nagging concern.

As I continue to pursue post-graduate work, this very question/concern is at the core of my effort. I hope some day to be able to find and share more definitive enlightenment insofar as answers and proper course of action. Regards, Mark 

Home Treadmill Exercises

Q. My children bought a treadmill for me for my birthday. It does lay flat as well as elevate and goes very very slow also. My question: When using the treadmill should I go for endurance (maintaining a comfortable speed for as long as possible) or should I work for speed and elevation? I have weights with it. Do I begin using them right away? Right now I have been able to go for 10 minutes at walking speed a little faster than a stroll and I am holding on to the rails. Are there any exercise sites out there describing treadmill exercises? Any help would be appreciated. By the way, I'm at 5Day, 21Hours and 57 minutes, having one smoke a day--- I pray this time will do it. I am optimistic.

* * *

A. Gary has asked me in the past to address your type of questions. I have been--and continue to be--reluctant, as it is impossible to properly advise you without the ability to evaluate you and get to know YOU individually, with respect to your symptom pattern, oxygen saturation characteristics, exercise effects--in terms of cardiac and vascular responses, then other ways, like musculoskeletal limitations--and to surmise what is safe and advisable for you to do. But, without offering specific individual advice, I would recommend these considerations:

Strength is built through repetitive work against increasing resistance. For the limbs, it is weight lifting, pedaling rapidly for short periods of time against high resistance, stair stepping/climbing, sit-to-stand exercises and the like. You do only a few at a time and resistance is the key.

Endurance is time-dependent and as such is accomplished by repetitive motion against a tolerable resistance for a LONG period of time. Walking on the treadmill and pedaling for considerable periods of time are examples of how to develop endurance.

Muscle tone is kind of an initial determinant to which of the two goals you should pursue primarily and how. If you have poor tone because of weakness, you also have poor endurance. Endurance is difficult, if not impossible to develop with a poor level of strength. BUT, trying to strengthen muscles too quickly against inappropriate resistance can cause injury, defeating the very purpose of your effort in the first place. Those with poor tone should work 'equally' toward building strength and beginning to build endurance by working for as much TIME as possible against LOW RESISTANCE at exercises like pedaling and/or slow walking. I think pedaling is preferable to walking as walking does not build 'strength' well when one must walk exceptionally slow (< 2.0 mph, for <30 mins.) and pedaling can serve to start you towards building endurance while building strength. (When I refer to pedaling, I mean either or both arms and legs.) 

Once the initial period of pursuing strength and endurance equally is accomplished, a complete routine that includes some exercises targeting strength and others that target endurance should be pursued, such that the two goals are pursued separately.

I recommend working toward a minimum 'duration' of walking on the treadmill on LEVEL grade, before attempting to add grade to the treadmill. Think of grade as resistance and realize that in comparison to increased speed, it adds many times more resistance for each little bit you add as compared to considerable increases in speed. The treadmill--and walking as an exercise--becomes your exercise to build endurance. How long you should go to achieve meaningful conditioning, is difficult to nut shell, except to say that it is dependent upon how many days per week you exercise and what speed you are able to walk. Using the rule of thumb of a 300-calorie burn per total exercise amount per day, on a three to four day-per-week schedule seems to be a key number in my observations. That is a LOT of work and an amount which you would likely find that you have to work up to. At the low loads that most can tolerate--and you, Nancy, seem to be there with only 10 minutes treadmill time, you can only burn 30 or so calories, unless you can do ten minutes several times.

Once you are able to tolerate considerable walking time-- 30 minutes, non-stop TWICE, for a total of 60 minutes--you can continue to work toward the 300 + calorie mark by increasing speed and then begin reducing time. Again, I use a rule of thumb that if you walk at less than 2.0 mph, you need to walk one hour total. At 2.0 - 3.0 mph, you can reduce your duration to 40 minutes. At >3.0 mph, thirty minutes is good. Keep in mind that with all of these, more time is better than less time, or these recommended minimums. For the total 300 calorie burn, you need to be doing some weight-lifting, pedaling or other vigorous short duration exercise in addition to the treadmill walking.

Now some would argue that it is a vigorous regimen I am recommending. Some would argue that it is more than is needed. I would argue/ask WHAT is considered to be 'enough'? And how do you measure what is 'needed'? I have found that the lower you set your exercise load, duration and calorie burn, the lower your return in terms of conditioning. What is 'needed'--like it or not--is determined by what functional capability you desire as an outcome AND what level of 'wellness' you desire to maintain, coupled with the level of symptoms you are willing to put up with. Low load and short duration adds up to low function, plain and simply!

Now, having said all that, what goals you can realistically target are dependent upon your oxygen demand and how well the system you have will meet that demand. You will have one he--of a time trying to achieve meaningful conditioning, let alone increased load/duration of ANY exercise if you cannot maintain adequate oxygenation. Regardless of the claims of some, I have observed--as a rule--that if oxygenation of greater than 90 % cannot be achieved--what ever the oxygen system and flow used, the greater difficulty you will have achieving any appreciable load and duration, and therefore, level of condition. For some, standard home oxygen systems cannot provide adequate supplementation to meet exercise demand. You can obtain different systems and equipment that WILL meet your needs, but generally at added--non-insurance/Medicare-reimbursed-- expense. Otherwise, you must go to a clinic, or rehab. program that has the equipment. 

The question of oxygen supplementation leads to my next point. If you do not know what your oxygen saturation does during exertion, much less how much oxygen is needed to meet your needs, you should get an oximeter. I cannot recommend home exercise for anyone using supplemental oxygen who does not have the wherewithal to E-N-S-U-R-E that their oxygenation will be adequate to safely exercise. If you go to a clinic, or rehab. program, or 'truly' evaluate your peak exertional needs with your doctor, you cannot ensure that you will not desaturate unacceptably during exercise. You should ALWAYS err on the side of more oxygen than needed during exercise, rather than too little. (There are those who would disagree with me on this, so I will tell you that this is MY educated opinion, and that there is no conclusive evidence one way or the other at this point in time. Of those with whom I have conversed regarding approaches and results, my patients appear to be more vigorous, have a higher level of function/conditioning/wellness than patients of those who disagree with my approach and take a more conservative approach with their patients.)

Lastly, the question of target heart rates seems to come up frequently. I tend to discourage using heart rate as more than a relative determinant of how vigorous to be with, and when to stop exercise. Target heart rates are fine for healthy people trying to achieve a tremendous exercise load, and for the concerns associated with those undergoing CARDIAC rehabilitation, but it has little impact upon exercise in chronic pulmonary disease, because sources of altered hearts rates are multiple and variable and do not in and of themselves constitute reason to restrict exercise activities. I have had n-u-m-e-r-o-u-s patients with resting heart rates of 120/min who have tolerated an amazing load of exercise which drove their heart rates up to 150/minute. Medications, deconditioning and other relatively benign influences can drive resting heart rates up as I describe. What I have found over the years is that if windedness and discomfort does not increase or become difficult to tolerate with exercise in those whose heart rates are elevated like that, then push on! I have not had ANY mishaps, or untoward events in many, many patients using this approach. Indeed, many patients who were denied the opportunity to exercise at other clinics/programs based upon elevated heart rates not only tolerated exercise well at my clinic, but achieved remarkable results--and as a rule--ultimately lower resting and maximum heart rates. Often, working with the physician, we have adjusted medications to reduce the heart rate increase caused by the drug.

I'll end by saying that I will entertain specific questions about exercise recommendations, but will elect to decline specific recommendations to individuals where it is advisable for you to seek such recommendations through local sources and in collaboration with your doctor. That is more for your safety than to cover my own behind. Regards, Mark 

Air Supply Personal Air Purifier (Medical Hoax)

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.

* * *

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 


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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;

Here is some input for adjustment problems

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

LOX and Medicare Reimbursements

[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

Air Hunger

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,

About Foot and Leg Cramps

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).

Bruises and Bloodspots

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.

Does Medicare Pay for Any Medications?

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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

Plants and COPD Patients

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,

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


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
a full face mask. Why do people fight this?    Joan S.-Il+a

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A. Hi Joan, BiPAP and CPAP use a "nose-mask", rather than a full face mask, which carries too much risk for harm. The reason its tough to get used to is it is a 'foreign apparatus' that us way less than natural, or even comfortable.   It takes some getting used to. BUT, for those who get past the initial hurdles and TRULY have sleep apnea/respiratory insufficiency that responds to the intervention, they will swear to its benefit and that getting over the difficulties of the initial discomforts  was more than worth it!!! There are even some folks who exercise on bikes, treadmills and the like, who have found it so beneficial, it is well worth the hassle to get used to using. Regards, Mark

[COMMENT] Mark, Small detail, but some people successfully use a 'full face' or 'oral-nasal' mask with CPAP or BiPap.  ResMed and Respironics both make them. When I use CPAP, I prefer the full face mask, because my mouth opens at night, and my throat can get very dry.  Some say that heated humidification is the answer, but I think it's either the full face mask or duct tape.

Masks of this type have an 'anti asphyxia' valve incorporated, so that if the power goes out, you are breathing fresh air, not exhaled gases from the circuit. Peter Bliss

A2. Thanks, Peter, I know that there 'are' folks out there using full masks and that they're not the usual "anesthesia masks".   I had not seen a mask like you describe, but will make it a point to familiarize myself with one.   I guess my fear is for our COPD folks who might ask for a full mask and get one that DOESN'T have the safety features of the one you describe and use.  Worse yet, I don't trust many RT's whom I would fully expect to place a standard anesthesia mask, not knowing any better.  I realize that folks can breathe through an ambiently vented CPAP/BiPAP machine, but, as you point out, exhaled gases are a problem.   Ultimately, I would exhaust efforts to get a nasal mask or pillows to work before resorting to a full mask.  Its great to have your input on them both as a professional and engineer AND a user! ! ! Regards, Mark

Oximeter Accuracy

Q. Mark, I just had an ABG test this morning. It gives blood oxygen readings in tenths of a percent. My Nonin read two tenths higher (not two percent) because it only shows full percentage points. I am sure you are right that the readings can be flaky but I believe those of us that use the oximeter regularly "know" over an extended period of days/weeks/months either from trends or comparable situations when a reading is "flaky". Isn't it true that, for those that can somehow get an oximeter, that having and using it is better than not having or using it? The practicalities of life dictate that we can't all have a Cadillac (I wouldn't have one anyway). My little Nonin may be like a Volkswagen but, to me, it is "way cool!!!" Otto Becker - NC

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A. Otto, I couldn't have said it better.  I agree with your points, wholeheartedly.  The k-e-y in using ANY oximeter is learning to know when your reading is "flakey", to put it in your apt terms.   I would go so far as to bet that those in our EFFORTS group who have Nonins AND some time under their belts using them, know better than many of the health care professionals they encounter when they are getting a "valid" measurement and when they are not.

As for the lag time between blood getting from the heart to the fingertip where it is measured, again, in the everyday circumstances in which y'all use them, the consequence is minimal and certainly not like it would be in my situation.  For those who use theirs for home exercise monitoring, while you get closer to my situation, I would bet that when you are struggling and
your monitor doesn't match how you feel, you act according to your best judgment, despite what the monitor says.   That is also what I would want to see you do!   Just remember to err on the side of safety.   Turn the oxygen up when in doubt!   That will NOT harm you for the time being, until you feel better and can turn it back down! Volkswagens RULE - - - even though Cadillacs are nice ! ! !    <|{:>) Best Regards, Mark

Mask vs Cannula

Q. I have a question that another member suggested and it sounds like it may be a good idea. I and many others have problems wearing mask when working outside because we cannot breath through them has anyone ever tried using a regular oxygen mask instead of the cannula and if so, does it work. Thank you, Francine

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A. Hi Francine, A regular oxygen mask won't F-I-L-T-E-R the air you breathe in - - - the purpose of wearing a mask in the first place!    If you are having trouble wearing a surgical mask, try the masks called "respirator" at the hardware store.  They are surgical masks that are pressed/molded fiber in the shape of a large cup that fits over your face without laying against your nose and mouth.   IMO (professional), if you can't tolerate that, then you need to refrain from the activity for which you were wearing it, as you can't get good protection from anything less than that. Regards, Mark

Turn Off Concentrator During Storm?

Q. If you are on oxygen and you have a bad lightning storm do you get off concentrator and on back up, or do you just stay put and pray a lot that the electricity doesn't go off, or that lightning doesn't strike house. It seems like for a week we have been having bad storms every night they start about 10:00 p.m. The wind blows and the lightning is awful. I have been having a panic attack every night. It takes me forever after the storm is over to get to sleep. Last night I turned off concentrator. I can't stay off my o2. I got on backup. It lasted about an hour. I feel like such a sissy. I live in west Texas and it blows sand.

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A. Hi Pat, There is no reason to turn off your concentrator during a storm.   There are protections built into the machine that will not allow it to present a danger, even if lightening strikes your house and surges electrical power or cuts it off.  Just keep your back-up set-up nearby and work on relaxing.

You call yourself a sissy.  Rather than that, I would suggest that you are indeed tending to make worse of a situation that isn't as bad as you think. You are bringing on your anxiety attacks and doing little to help yourself resolve or avoid them.   While I don't have any patent answers as to how to avoid that, I would suggest you consider how "aware" you are of the situation and be very deliberate to try to relax and refuse to let it "get your pants in a bunch".   That will take some doing - - - and some practice.
But, the sooner you start, the sooner you'll master whatever it is you need to master to overcome the problem. Best Wishes,

Buteyko Breathing Method

Q. Is it possible that some people are using more oxygen than they need ?  I've been reading up on that Russian breathing thing --- The Buteyko Breathing Method . I haven't studied the whole thing yet, but I guess the main principle is that people with lung problems "over breath", hyperventilate and end up with too much oxygen --- which this Russian doctor says disrupts the whole natural breathing process by breathing out too much CO2.  When the CO2 level get too low, the natural "trigger" for taking an automatic breath is gone.  Maybe Mark or another of the "medical" people have some thoughts or facts on this Buteyko Breathing Method. Ken in MA

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A. Hi Ken, You have fairly well characterized the 'core' premise/claim of the Buteyko philosophy and method.   In actuality, his premises apply fairly narrowly to those with Asthma.   To extrapolate them to those with COPD - - - especially those with advanced COPD who retain CO2--not only takes it beyond potential application of his theories and placing dangerous conditions for those to whom extrapolations would be applied, but it is also where his theory begins to unravel in the greater scheme of things.   There are many points which comprise the Buteyko Theory that don't mesh with conventional science with regard to pulmonary physiology and Oxygen utilization and CO2 production and clearance.   Whether or not the Buteyko Theory - - - as presented by the man and his 'followers' has A-N-Y basis in reality remains to be seen as there is as yet NO objective supportive data.  However, prospective studies are under way in the UK and elsewhere to take an 'objective' look at the method.  Hopefully, they will produce data to explain what is really going on to produce the anecdotally reported "dramatic" exchanges.   I've seen some of the study models and they look pretty good.   What I suspect - - - indeed, Expect - - - will come forth from the studies now under way will be either that the method is valid and 'works', or is not and doesn't 'work' AND, more importantly, IF shown to 'work', a mechanism OTHER THAN what is claimed to be responsible will be shown to be the 'critical effective component' of the method.

Buteyko is not a whole lot unlike some aspects of Yoga breathing.  With the beneficial changes that occur with Yoga breathing, we know that cardiovascular and hormonal changes induce with relaxation are responsible for the improved 'well-being' seen with Yoga - - - at least as a partial explanation.   Other forces may well be at play, but efforts to explain them have not been a priority.  It is easy to draw correlation between Buteyko and Yoga in the similarity of changes and causes of changes.  It is also
possible to envision changes in blood gases - - - namely pH and pCO2 - - -with Yoga similar to Buteyko. Yet, Buteyko makes two claims that go against what we know - - - as reproducible physiological activity - - - in holding that breathing problems
[in asthma] are owing to too much oxygen and a lack of carbon dioxide. Thousands of blood gases measured at all points before during and after asthma attacks over a vast range of patients just doesn't provide ANY evidence that there is any truth to those claims.   Invariable, we see normal to elevated CO2's, NOT the low CO2's of hyperventilation that Buteyko claims.   Further, there is no measurable evidence to support Buteyko's claim that hyperventilation has anything to do with onset or perpetuation of symptoms.   The difference in oxygen levels when CO2 is "low" versus 'at desirable levels' by Buteyko's definition is so insignificant that I among others have great difficulty with credibility of his claims that too much oxygen brings on breathing troubles.   We are talking about only a few mmHg pressure, here.   Invariably, the oxygen levels at the 'cellular' level are
the same!    There's just no difference of consequence between the good and bad levels claimed by Buteyko.

So, in summary, those with COPD should bypass Buteyko, as there is nothing there of potential benefit and certainly much of potential harm to you. Those with Asthma, should be cautious about practicing Buteyko techniques to the point that whether or not your doctor agrees with Buteyko, or likes the idea of you practicing his method, the doctor still needs to know.   Because
there is enough anecdotal evidence to warrant investigation of Buteyko in a controlled objective manor, there is reason to be curious, even optimistic. If it shows to be effective, that it will turn out to be effective for the reasons Buteyko claims is highly doubtful. Regards, Mark


Q. Has anyone ever used one of these ?  I told my son I had ordered a machine to check "expiration" and he said he had one.  Turned out, it was a Voldyne which measured inhalation.  I worried a little when I couldn't get this to go above 1500 ml ---- then I read up on it and realized I hadn't eliminated residual air in my lungs.  When I did a slow exhalation, I was able to get the Voldyne up to 2500 ml which is the limit for this particular unit. Is this a "good" exercise for us to be doing ? Ken in MA

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A. Hi Ken, A-N-Y exercise that causes you to control your breathing, exhale maximally and efficiently and inhale maximally will do you s-o-m-e good!  Voldyne, when done correctly, will help you make your exhalation more efficient and master pursed lip breathing.   If you can achieve 2500 ml in one breath, I would speculate that your COPD is very mild, indeed! Regards, Mark

COPD, Asthma or Bronchitis?

Q. I was at my chiropractor's a short time ago and some of us patients were passing the time mumbling about our health "issues".

I mentioned my copd and went on to explain the initials and adding that emphysema, asthma, bronchitis and a few other ailments all shared similar criteria. One of the people jokingly said : "How do you know which illness is bothering you during one of those exacerbations ?"

Well, I didn't have an answer and still don't. And I'm wondering if the medical people I deal with have a better guess than I do.
I'm basically an E with components of both asthma and bronchitis.  Sputum color is supposed to be a clue but diet issues cloud than one up. Is there a way to tell which component is rearing it's nasty little head? Jeff, -GA-

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A. Hi Jeff, Your question, for the most part, is one of those that floats about in the invisible realm of the unknown --the undeterminable, that which doesn't make much of a difference.   I say for the most part, because unless you are having a flare-up of the asthma component of your COPD, you cannot discern anything further with regard to a discrete component's influence.

Generally speaking, components of COPD that are suffered 'multiply' are not "discrete" in their manifestation (except for asthma, which sometimes can be nearly impossible to definitively isolate as a component).   And so goes the symptoms one suffers from each component.

An exacerbation is a flare up of any of the various symptoms an individual suffers as part of 'their' infliction with COPD.   When we diagnose and treat exacerbations, we do not ask ourselves: "Hmmm, I wonder which component of my patient's COPD is causing this exacerbation?", as if we will make any treatment decisions or adjustments based upon the answer.   Except
for asthma, it really doesn't matter which component is at cause, were it possible to discern such information in the first place.  Even then, it is the "symptoms" we treat, any way, not the component at cause.   After all, there is nothing we can do to "alter" the cause, since it is a "fixed" change in the patient's physical make-up.   When Asthma is "flaring up" more than its stable state, we can "t-r-y" to improve bronchodilation, but that is often a difficult and unsuccessful venture.   In any case, we do just about the same thing - - - EVEN WHEN asthma IS a major component - - - give beta-agonist bronchodilators, anti-inflammatories and improve mucus mobility and expectoration all more intensively and at increased frequency..

Sputum color indeed IS often of help in determining what infectious agent might be to blame.   And one can get an infection no matter which component or combination of components they have.   Diet issues do not "cloud" evidence obtainable from sputum color, unless you speak of something of which I am not aware.

So, the bottom line is, unless you're looking for an answer for a game of "Trivial Pursuit", knowing the answer to the question you pose - - - beyond a basic point in the case of the asthma component - - - is not only unknowable, it doesn't have any bearing on the pertinent matters of exacerbation.    <|{:>) Regards,

Are We Doomed to CHF?

Q. Are we COPD people doomed to CHF? If not, how can we prevent it? How can it be treated? Is it worth getting an echocardiogram to check for it if there's no adequate treatment for it?  What's your experience with it? Mary - CA

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A. Hi Mary, You asked: "Are we COPD people doomed to CHF?" A: Yes, for the most part.  CHF is a "usual progression of the disease process.   For some it hits earlier than for others.  For some, it hits worse than others.   Yet for others, they succumb to other complications before living long enough to develop it.

"If not, how can we prevent it?"

 You can delay onset or prevent by detecting hypoxia as early as possible.  When hypoxia is detected, use of oxygen to correct it can slow it down, or delay its worsening.

"How can it be treated?"

 Oxygen, diuretics and exercise are the major interventions that are effective.   There are other more specific interventions, depending upon individual idiosyncrasies of the manifestation.

"Is it worth getting an echocardiogram to check for it if there's no adequate treatment for it?"

Your doctor can determine whether or not echocardiogram will provide helpful information not obtainable through other measurements/tests.

"What's your experience with it?"

I've seen hundreds of patients with CHF in my program.   Those who used oxygen, watched/controlled/restricted fluid and salt intake, exercised and kept active did well - - - considerably better than their counterparts who did NOT follow those few, but critical criteria. Regards, Mark

Swollen Feet

Q. Hello, Does anyone have any suggestions as to what to do about swollen feet. I keep them elevated as much as possible. Do you use Ice or heat for the swelling. Thanks, Dick

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A. Dick, It depends upon "why" they're swollen. If you have pitting edema--you can press the tip of your finger into the flesh and when you release it, an indentation remains that takes several minutes to fill back out again--then you could have a problem with Congestive Heart Failure. In any case, your doctor should know about your "swelling" immediately. This is NOT something that should be let wait, or allowed to go unaddressed! If you have gained more than 4 or 5 pounds since the swelling began, that signifies an increasingly dangerous situation. Don't mess with ice or heat, unless your doctor thinks is will help 'beyond' the medications you need. They are not the treatment of choice. You need a diuretic--or more of the one you're taking, IF you indeed are taking one. Don't mess around with it. Call your doctor! Regards, Mark

Treadmill Elevation

Q. When I was in rehab, the pulmonologist said that for training, endurance was more important than stress. I go on the treadmill at 2.2 at an elevation of 1.5 for 35 minutes. This is without pushing myself. My pulse goes up to about 100 and saturation never goes below 97. I don't like my pulse to go over 110 because I had a double bypass about six months ago. Would it be better for me walk flat at a higher speed and longer? Or should I try to increase what I am doing? I could probably go for 45 minutes at 2.2 at zero elevation.

Incidentally, before my bypass, I was only SOB with moderate to heavy exertion. After the operation, I could barely walk across the room. It took over 3 months before I was breathing as before. During that time, my pulse was in the 90s at rest and would shoot up to 120 with any exertion. I was worried about this but the cardiologist said that in time, my pulse would return to normal. He was right. It is now in the mid 60s at rest.

When I couldn't breath, I realized what a lot of you go through every day. I had to plan any action what so ever. Simply getting up from a chair and going to the dinner table was an event. Now, every night before I go to sleep, I thank the Lord for giving me back my breath.

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A. Hi Joseph, You can go either way--more speed, flatten grade, add tie. Realize that when we speak of "endurance" we are talking about "cardiovascular, as well as pulmonary endurance. Indeed, when we speak of it normally, we are talking primarily of cardiovascular considerations. We still cannot separate them, despite our emphasis on the "pulmonary side" of the conditions of which we speak. Yet, the basic premises remain. You should work toward getting your heart rate higher--as your cardiologist concurs--AND as you gain time out from your bypass. keep adding one component or another as time progresses targeting first, the longest duration you can tolerate, then, at the highest speed, then with as much grade as you can handle. That is the hierarchical format I would recommend. Realize that is my "recommendation" in as much as I am capable of giving you "general" recommendations. Your doctor knows you and your health best and can tell you how much of each you can be safe with, in terms of how it affects your cardiovascular vital signs. Best wishes, Mark

What is Diffusion?

Q. Please what is diffusion? Thank you, Francine

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A. It is the physical principle by which oxygen molecules penetrate the membrane and become dissolver in the arterial blood . It is the act of molecules of gas 'penetrating' the alveolar-capillary membrane and getting into the blood.

Exercise Advice

Q. I got a TM in early March. I had been walking in the hall of my bldg with the handrail for support and could do about 8-10 slow minutes there. I was surprised at my first TM walk at 1.5% incline (minimum setting) and 1.0 mph. I walked 10 minutes before my hip joint and lower back pain forced me off. I've been doing that regularly and now can do 12 min with no pain. My breathing varies according to the amount of secretions in my airways at the time I walk. So far, so good with breathing. I tried to walk at 1.5 mph and could only do 6 minutes. My question for you is whether my pulmonary system will benefit more at the slower but longer walk or at the faster walk of less time? My inclination is continue at 1.0 mph until I can do 20 min without joint pain. I am enjoying the benefits...I walk a lot more now and I do not need the handrail for support. I can manage 6 complete aisles in my huge supermarket now. So, for me, 1.0 mph for just a few minutes is getting me off my butt and up and out. But, I want to maximize my benefit so please give me your sage advice. Virginia

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A. Hi Virginia, It sounds to me like you are doing well as you are, now. I would go for more time and save the increase in speed for later. Can you block up the back end of your treadmill to make it flat? I think getting rid of the incline might allow you to increase time immediately. Regardless of the "ideal" in conditioning speeds and durations, some folks just have to start out at the 'snails pace' and work their way up. While there is currently some data coming in that suggests that short FAST spurts has value and can play a role in conditioning those with COPD, I haven't seen enough to draw any conclusions. Neither are the investigators who are reporting their results. They are cautious, to say the least. Hang in there and be patient! ! ! You'll gain on it, yet!!! Regards, Mark

Clinical Trials

Q. Can anyone tell me why a person is ineligible for a clinical study if they are on O2 ?Also, I hope I make sense with this one...Most people are concerned with their FEV1, my question is this..if their FEV 1 is at 65%, but their diffusion is at 36, why are we not concerned about the diffusion...hope some one can explain this...Also, why does SSD, more concerned with FEV 1 and not diffusion? Thanks, Carol Pa

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A. Carol, Carol, Carol! ! ! GOOD questions! Depending upon 'what' is being 'looked at' in a study, things like oxygen use, steroid use or reliance on bronchodilators for stability of symptoms can knock out a potential subject because those things "confound" and 'confuse' the observations. If the investigator cannot account for the influence of factors OTHER THAN what the study seeks to control for, then the results cannot be explained or accounted for, in terms of cause and effect. Effects can be altered by confounding variables, such that their effects may be greater or lesser, or altogether different in nature, rendering the study invalid to prove anything.

When one has a 'good' FEV1 AND a lousy diffusion capacity, they can be diagnosed as having a "restrictive lung disease', like some type of fibrosis, for instance. The fact that their diffusion capacity is significantly decreased most certainly IS a source of concern! ! ! Your
doctor SHOULD be concerned about the diffusion, under these types of circumstances! It also indicated that you will likely need oxygen - - - now, if not soon, as well.

SSD S-H-O-U-L-D be concerned with a diffusion capacity that is decreased, regardless of what the FEV-1 happens to be. That alone can wreak havoc on your life and activities. Regards, Mark

Endurance vs. Speed

Q. I was dx with bronchiectasis last monday. A week prior to that I was in the hospital with pneumonia. I have been on 3 L of 02 since I was discharged from the hospital but my doctor thinks that won't be permanent. I'm currently on Levequin for an infection. For the past 4 months my exercising has been sporadic due to off an on infections/hospitalizations for 2 bouts of
pneumonia. I started back today and had to decease my speed from 1.5 down to 1.1mph as my oximeter showed my saturation to be 87/88. Purse lip breathing didn't bring it up to 90. I wasn't short of breath. I was able to walk a mile in about 45 minutes and never once felt short of breath. My question was this: should I stay at the 1.l mph until my endurance is up/infection down/ and 02 saturation up above 90 or should I try walking at 1.2 or 1.3 unless I drop below 87/88. I hope I've put all the pertinent information in here so that you'll have a better view of it. Thanks, Mary Ellen

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A. Hi Mary Ellen, I would encourage you to increase your oxygen and increase your speed. Be sure you are walking on a flat treadmill, as well--especially in view of other discussions here today! The other thing I would recommend is to be sure your oximeter is as accurate as possible. As I explained in a response earlier, several influences can render the measurements from pulse oximeters--especially finger measurements--very inaccurate. I would wonder that since you weren't having any breathing difficulties, the pulse oximeter wasn't reading 'low'.

In any case, considering that you can get more oxygen flow to cover your needs AND a better feeling of the accuracy of your monitor, I would 'generally' encourage you to challenge yourself to more speed, until you feel you are having to 'work' to breathe. Provided your heart rate is OK and you feel alright, see how you do and let us know. Regards, Mark

Heart Rate Limit/Exercise

Q. Mark, Should you slow down or stop if your heart rate exceeds the limit your doctor has given you. Jeanette

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A. Depends upon what that limit is and how realistic it is. It also depends upon how you feel--bad? good? no different? There are several factors to consider. I have found that many health care professionals--doctors, nurses, PT's, tend to be arbitrary about selecting maximum allowable heart rates for their patients. They consistently "under shoot" the appropriate and safe limits. Much study data are coming showing that to be the case. That is why I discourage folks from going by heart rates in pulmonary patients--within reason of
course. I don't like to see heart rates higher than 150/ minute, without close monitoring AND a good reason for it to be that high. BUT, I will work a patient with that high a rate. I've NEVER had an adverse event as the result, in many hundreds of patients! Regards, Mark

Using Gas Stove with Oxygen

Q. I did not think a person should use one if they are on oxygen 24/7 Isn't it dangerous? Thank you, Lynn

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A. We have covered this question before, but it is always timely to repeat as new folks come on board. It is NOT harmful/dangerous to use oxygen in the presence of flames such as those encountered with cooking. You just have to keep alert, be careful and be sure your tubing remains at least a foot from the burner 'area' AND that you don't direct oxygen toward the flame--either with the system flow or by blowing your exhaled air at the flame. Regards, Mark


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

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

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

Upper Body Exercises

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

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

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

Normal Heart Rate

Q. What should our heart rates be at rest, when should we be alarmed? I have been struggling with mine the past few months. Even at rest I am in the 90's, but can go down into the 70's but if I walk 50 feet, I easily go into the 100teens. Yet I can do an hours worth of water aerobics and stay in the 100teens. However, dressing after the aerobics, my heart rate goes to
105-110. In fact, sleeping my heart rate stays in the 90s. I know my max heart rate would be 159 so I figure I shouldn't get it any higher (in my physical condition) that 135. Can one or both of you enlighten us on this subject? Regards, Sandra WA

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A. In the case of those with COPD, heart rate is over-rated, unnecessarily restricted and needlessly worried over--in my very experienced opinion!!! Folks with COPD have a multitude of reasons w-h-y their heart rates will be elevated--MOST of which are in no way harmful or presenting unreasonable risk. Your heart rates, Sandra, are nothing that I would even blink an eye at! Were you talking resting heart rates of 110 and exertional heart rates above 125, I might ask a few questions. I like your max heart rate. BUT, I wouldn't get excited if you exerted enough to raise your rate to 135 AND if you felt fine (except for acknowledging how hard you were working) had no suspicious or adverse feeling and your blood pressure was alright. I have MANY folks whose heart rates get up to and above 150/min. As long as they do not have a primary cardiac condition, or problematic cardiac history, feel fine and have a "regular" rhythm, I don't get excited. If there is a good clinical reason for the rate to be that high, I acknowledge it and continue with the activity, while observing for any changes. Very deconditioned folks can have huge swings in their heart rate without it being a problem. As their condition improves, their heart rate comes down. Others have elevated rates because of medicines they are taking--beta-agonists, steroids, xanthine medications.

So heart rate--to me--isn't a problem until it heads toward extremes of high and low. I get MORE worried about a heart rate that
doesn't reach 100, while the patient is breathing hard and is desaturated than I do about the same circumstances with the heart rate going up to 140/min! I get worried when I have someone with a pacemaker that blocks them down at 110/min, yet they have reached only 40 % of their tolerable exercise load and are panting like puppies.

So the bottom line is that distortions in heart rate need to be correlated with other vital signs and clinical data before you can judge them to be normal/abnormal, acceptable/unacceptable or otherwise problematic and in need of intervention. Regards, Mark

Chronic Bronchitis

Q. I just can't help thinking that the term Chronic Bronchitis is a catch all phrase that covers a multitude of problems that the medical profession doesn't know some of the causes of, or how to deal with, at this time. A few years ago I developed a nightmarish cough that lasted almost 6 months. My pulmo and PCP gave me every antibiotic under the sun, all the nasal sprays ever made, to no avail. The only thing that helped was a burst of Prednisone, and when that was discontinued, the cough came back. It finally went away by itself. An otherwise healthy friend of mine, who does not have COPD, develops
the same type of cough for two or three months every few years and his doctors are at a loss to explain or treat it. I have mild Emphysema and get SOB only with moderate or heavy exertion. I still cough up some green mucous every morning and have periods of clearing my throat at times during the day. Although I can live with this, I still feel that the mucus shouldn't be there and there should be a way a curing this. They just don't know how yet. Joseph Rabushka

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A. Hi Joseph, Were it so easy to say that Chronic Bronchitis is some nebulous term that we apply to that which we cannot explain Indeed, Chronic Bronchitis (CB) is a very specific diagnosis that can be established by definitive clinical information and patient history, as well as from histologic changes (changes in the structure and make-up of tissues) seen under microscopic exam of bronchial tissue. I CAN assure you it is not that we don't know what is wrong, or what is causing what is wrong. The evidence is well documented and available even to the lay person! This is no mystery, friends!

Folks with significant smoking history--with or without significant chronic mucus production can be labeled with the diagnosis of CB. When bronchoscopies yield tissues that have the classic changes of CB under microscopic examination, we can definitively assign the diagnosis of CB, whether or not the individual has significant mucus production. This is the long-standing evidence.

V-E-R-Y often, doctors abbreviate the extent of diagnoses an individual has--for instance, telling someone with obvious clinical signs of CB that they have emphysema--because of brevity, desire not to confuse or alarm or overwhelm the individual with too many labels, or other numerous reasons. The simple fact is, if your COPD is smoking related, you more than likely have a significant component of CB. It just serves little purpose to get very elaborate, since it changes nothing with regard to management and treatment.

Mucus production is N-O-R-M-A-L in the lungs of all humans. When it is increased in association with lung disease, it takes on appropriate significance and context only insofar as it is a problem with the individual. Your mucus production sounds like typical morning mucus, the result of accumulation of mucus from post nasal drip during sleep. The little bit of clearing your throat is probably normal to slightly indicative of your lung disease.

In any case, to presume that you should have "NO" mucus production when you have a diagnosis of COPD is unrealistic and erroneous. As one who has dealt with lung disease for more than 30 years, I would speculate that the last expectation any of us have is that we would ever "eliminate" the inconvenience of mucus production--nor would we WANT to!. Much as you might hate the nuisance of contending with mucus production and clearance, it serves to clear--to flush--your airways of debris and irritating substances. In that, it is "good", like it or not. . . . sorry, folks--that's the hard truth! So there's nothing to "cure". We can't (maybe, as yet) change the morphology' of the tissue changes of CB. So the chance of changing the mucus problem with CB is very remote. Best Regards, Mark

Panic Attacks

Q. I have been having panic attacks recently. They are bad enough for me not to want to go out as much as I use to. How do anxiety drugs help. I notice many people take them......Esther/Wi Chapter Leader

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A. Hi Esther, Anti-anxiety drugs (anxiolytics = pronounced an-zio-litiks) work through various pathways, depending upon the drug class they are from. For folks with COPD who have panic associated with breathless spells, anxiolytics work very poorly to stop/prevent the panic. For folks whose anxiety level is raised as a matter of their disease and life-style with the disease, various drugs have a helpful effect, but how much is very individualized. Some drugs are habit-forming. Some drugs adversely affect ability to breathe effectively. Which one is suitable for and individual is best determined by your personal physician or psychologist/psychiatrist. I would encourage
you to speak with your doctor to see if a medication would be in order for you. Regards, Mark

Normal Pulse Rate

Q. Can someone tell me on the Oximeter what the pulse rate should be. Mine seems to have climbed - was 90 and now can be anywhere from 90 to 105. Also have a lot of palps. Have been sick the whole month of March - Pulmo has seen me, done x-rays- been on a pred burst of 40-30-20 and now on 10 per day. It sure is distressing when you can count the beats. Have to report back in on Monday. Breathing is not good, however, managed to do 10 minutes on the bike yesterday otherwise I have been told to rest. Thanks in advance. Gael

* * *

A. Hi Gael, Your heart rate is not significant with regard to change/variability unless you are trying to tell us that those "palps" you mention are "palpitations" AND are irregular with regard to rhythm. In any case, irregularity and palpitations are the diagnostic information in your case, as 90 - 105 is not an abnormal variation, especially if your usual resting heart rate has been 90 for some time. Let your doctor know. He/She can determine if there is any abnormality there. Regards, Mark

Spiriva and Lactose

Q. I just found out that Spiriva has a form of lactose in it. I wonder if those of you that have had a problem with it, also have a problem with lactose. I had no idea that it contained any kind of lactose. Anyone else heard of this? Pat/MO

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A. M-A-N-Y drugs are placed in a Lactose, Maltose or other hybridized sugar preparations or carriers. V-E-R-Y few folks have allergies to Lactose or other sugars. For those who have lactose intolerance, "inhaling" Lactose has no consequences. Regards, Mark


Q. Ok....I HAVE to ask this question, even if it is embarrassing to me. Does anyone else fear having sex because someone else is in their air space? Sherri, AZ.

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A. There are more ways to achieve intimacy than intercourse. Sure, many folks 'never envisioned themselves' addressing sexual techniques and the like - - - after all, that stuff isn't supposed to be important to you after middle-age, right? Poppycock!

Preparation and planning are a must. Oxygen and medications to enhance breathing--and other factors, for that matter--are helpful. Then, honesty, imagination, communications and patience in addition to the other necessities of the senses and you are ready for what can be a very rewarding experience. Sure, its scary! Sure its awkward and a bit embarrassing. But, folks tell me that its worth the effort and angst, once you forge ahead and achieve success, no matter how small.

There are scattered good printed materials on sexuality in chronic disease and especially in COPD. Ask your pulmonary doctor or other pulmonary health care professionals. Search the internet--I'll bet you can find some good information. Regards, Mark


Q. My pulmo told me yesterday that there has never been a study which shows that guaifenesin is effective. Also, in "Worst
Pills, Best Pills II", by Sidney Wolfe, M.D., it says: "No well-designed study has shown that guaifenesin works, despite the efforts of drug manufacturers to convince people that it does." The book has a 1993 copyright, so it may be outdated information. Mark, are there more recent studies which say that it does, indeed, work? I couldn't find any on MedLine. -Jack

* * *

A. Hi, There is no "unequivocal" study (to my knowledge) that shows that Guaifenesin is directly and predictably effective to thin mucus. That is NOT to say that there are no studies that say "it works". The problem is the "science" says that the biochemical pathways and activity of Guaifenesin "should" cause increased secretion of water from the basement membrane * the layer of cells and connective tissues below the airway surface cell layer) toward the airway surface (and resultantly the "sol" mucus layer) which would have the effect to 'add water' to the "sol" layer (the liquid mucus layer) which would then be transferred to the "gel" layer (the more 'solid' layer exposed to air within the airways--it is essentially "dried out/drier 'sol' mucus), causing it to become less viscous. The fact that "rheological" (rheology = properties of mucus) analysis of mucus before and after administration of Guaifenesin is shown to change in a predictable manner toward less viscosity and adhesion is what leads investigators to surmise that Guaifenesin does what it does. What they cannot show in a definitive, stepwise manner is "how" it works. So ultimately, since the evidence is not definitive, they cannot make specific conclusions.

My bottom line would be; it is better to take the Guaifenesin and a little extra water, than to forego the Guaifenesin and try to flood yourself with lots of water--a technique without scientifically sound theory nor ANY evidence--not even anecdotal--to show that it has ANY predictable effect! The later most certainly contains the pathways to peril moreso than the former, especially for those with tenuous cardiac and kidney function. Regards, Mark

Emphysema and Lung Cancer

Q. Do most people who have emphysema, does it turn into lung cancer? Have there been a survey on this? Jim saw his plum. on Wednesday ad he did a lung x-ray and then sent him Thursday for a lung scan, saying it was possible it was cancer. Something about nodulaes(sp) then walked away. The word cancer scared me so bad I didn't think to ask anything else. How long does it take to hear from a scan? As you probably know I am terrified. Please keep him in your prayers. God Bless Peg

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A. Hi Peg, Emphysema has not been observed to morph into or lead to cancer. The development of cancer after one has been diagnosed as having Emphysema is coincidental, not causal, so far as information and theory we have apply. Hopefully, you should get the results of the scan within a few days. Don't be afraid to 'hound' your doctor to be sure he doesn't delay in sharing the results with you. Hopefully those "nodules" will end up being calcifications or something equally harmless. Prayers are with y'all. Regards, Mark

Conserving Devices

Q. Good morning, I ordered a conservative device for my port tanks. It is pulse or continious. This has extended my port oxygen from 3 1/2hrs up to 30 hrs. so far it has worked great. does anyone else use this device.

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A. Hi 'mesjava' (Sorry, but you didn't sign your post.) You are referring to an 'oxygen conserving device', also called a 'conserver' and often abbreviated OCD. There are many brands and models of devices that work with oxygen tanks. I assume you refer to an "E"-sized tank with the 3-1/2 hours to 30 hours change in tank duration. Be aware/mindful that OCD's function very differently from one to another with regard to how much they 'conserve'. It is not enough 'alone' to know that the tank will now last 30 hours. It could be lasting that long because it is 'cheating'/'skimping' you on how much oxygen it gives you. That can result in too little oxygen being delivered to you--despite the fact that you may be setting it 'the same' as you set your concentrator or tanks with continuous flow. Also, the continuous flow feature on 'most' OCD's is pre-set to 2-liters. So don't think yours will be delivering the "set" flow when you change it to the conserving/pulse mode.

Finally, Peter Bliss, Larry and I have strongly recommended to folks to have their oxygen saturation checked/measured--WHILE they are walking around for several minutes, to determine for sure "what" setting they need for adequate oxygenation, regardless of the device they are using. If you haven't done that, I advise you to do so.

Finally, I think you'll find that MANY of our members use OCD's of many brands and models. As well, many members use liquid oxygen with portable units that have conserving mechanisms, as well. OCD's are fairly common, today in the world of home oxygen. What "brand" and "model" OCD do you have? Regards, Mark


Q. I have been on the Adkins diet for TOO LONG. I hate this diet and it is tearing my stomach and bowels up. I have never had stomach trouble till I got on this diet. I am going back to my fruit and yogurt for breakfast and my health food drink for lunch. I did although loose 12# in 21 days but it just stopped and I have been the same weight for the last 2 months. I exercise every day. 40 minutes on the treadmill at 2.mph; Bike at 20mph for 7 minutes and lift weights for about 15 minutes. I get a full workout. I guess the only way I am going to loose this pot belly is to step up my exercise program but my saturation drops to 88 and lower when I speed up on the treadmill. I may ask my doc for supplemental oxygen so I can get to 3.5mph on the treadmill and keep my sats up. What do you think Mark? Keep on Keepin' on, Tony in Dallas

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A. Abdominal crunches, Tony!!! Actually, your 'pot belly' may still be a function of your flattened diaphragm, since you had only a single lung transplant AND you did not regain more than modest pulmonary function from an overall perspective. You may be trying to do the impossible--or at least the impractical. Be sure--especially since you have had transplant--that you are maintaining your ideal body mass. If you diet to below that point, you risk the continued success of your lung transplant. Regards, Mark

Homgenous vs. Heterogenous

Q. Mark can you explain any correlation on the homgenous vs heterogenous issue? Like what causes which. Or is this another on of the lovely mysteries of COPD. I'm just curious. Thanks.....John and Pat, MS

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A. Hi John, While the greater part of the answer seems to fall under the "great mystery" category, there has been some data leading some to speculate that smoking correlated with upper lobe bullous disease or concentration of emphysema in the upper lobes. I haven't seen enough literature on it to formulate a firm opinion, so I'll have to let go at that. It seems to me that I have observed most all LVRS patients whom I've worked with, whose disease was concentrated in their upper lobes were former smokers. But how they match up against ALL of the patients who were smokers, as a percentage, I can't say. I can say that they don't seem to me to represent a great percentage of the total, per se. I think that those with more purely emphysema could be argued to have more homogenous disease. Those whose COPD is a mix of Chronic Bronchitis and Emphysema would tend to have more heterogeneous distribution, because of infection and structural destruction. This is only my speculation, though. I don't have any definitive data upon which to argue it as fact. Regards, Mark

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Being Considered for Transplant

Q. Is there a certain level you must be before being accepted for a transplant? Vera GA

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A. G-e-n-e-r-a-l-l-y your FEV-1 needs to be at or less than 30 % AND your disease progression such that it is expected that you will continue to deteriorate and succumb mortally to the process in a predictably short period of time without intervention such as lung transplant. Some programs start the listing process earlier. But I know of none who want the potential candidate to be any sicker than this by the time they seek to 'enter' the process. You need to have predictable survival for 6 to 18 months to account for the time you may need to sit on the waiting list accruing seniority/priority.

Each program has its own specific policies. If you are considering transplant, contact the program through which you would choose to have it done. Ask them for their criterion. They do not keep that information secret and will usually happily give it to those who inquire. Regards, Mark

Oxygen Addiction

Q. Is there such a thing as oxygen addiction? That is, getting so used to it that when not needed (e.g. when O2 SATS are above 90) you "do" or "want" it anyway? I'm new to EFFORTS & O2 as well. Using 2LPM at night & during acitivity. Had LVRS in 96 which was great for 6 yrs but SOB more frequently again. (age 70) I'll watch list for response. thanks. Mark, Seattle

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A. Hi Mark, Mark from the EFFORTS medical board, here. ONLY in the instance when oxygen is pretty much ALWAYS normal--and that would especially include during exertion--and I would further attach the condition that oxygenation needs to be 94 or higher--ALWAYS--and THEN one still has an emotionally intense need for oxygen, claiming relief from breathing difficulties (that cannot be observed by others) would I say that THAT person is truly "addicted" to "supplemental", OR a-b-o-v-e normal concentrations of oxygen. Even then, it is a purely psychological condition. It would be such that were oxygen taken away from them, they might "freak out" but they would exhibit absolutely NO abnormal physiological function with regard to , or in terms of a "deficit"!

Conversely, anyone who exhibits difficulty breathing AND decreasing oxygen saturation to less than 94 % who finds relief physically AND psychologically, is NOT "addicted" in the true sense of the word, since there is much evidence that suggests that folks who are "below normal" but above the "critically low" levels--85 % - 90 %, depending upon who you ask--can exhibit true improvement when administered oxygen sufficient to return their saturation to normal range.

In any case, if your oxygen saturation goes below 94 %, you are not in the "likely to get addicted" club. So don't spend precious energy being concerned about it. Get up! Get moving! And breathe well! Regards, Mark

Understanding your Diet

Q. This site from my friend Shari helped me understand a lot about my diet, moods, compulsions, etc. It's a good bet I fall into the sugar sensitive group AND in the last 14 months it's a certainty I have fallen into the obesity group (30 pounds over weight for my body type). Explanations help. Lot's of study material thru this site..... http://www.radiantrecovery.com/science.html. After talking with Shari this afternoon my first step has been to replace cow's milk with soymilk for cereal, coffee, taking pills, etc. Btw, she says the soy ice cream is fairly good, especially the sandwiches and cones found in some frozen food sections. Jeff -GA-

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A. Sugar/carbohydrate is only one component of diet. While there may certainly be folks who are unusually sensitive to carbohydrate, that there are "many" is questionable. At the same time, folks could be over-consuming sugars and reacting to that over consumption. In any case, I would urge anyone who thinks that sugar may be a problem for them to check with their doctor. Get a nutritional evaluation and intervention if problems are found. Carbohydrates take on a particular perspective in COPD, as we have discussed in many contexts before and should not be taken lightly. Make changes in your diet with the collaboration of your health care professionals so that when/if problems arise, they can be anticipated, or at least so that changes you have made in your diet and lifestyle will be known and considered by them. Regards, Mark

Neb Medicine Quantity

Q. Mark, I was in hospital a month ago one night I just couldn't breath, I asked the nurse for Ventolin she refused saying I had, had my quota for the day. I started to hypo-vent she called the doctor he also refused but gave me an injection after about 5 minutes I calmed down and was then able to sleep. We do not use nebulizers in hospitals here, they connect direct to the neat oxygen system to nebilize the medication and maybe this is the reason why a patient very rarely needs more than one dose of medication when being admitted to A & E. I never have. I belong to the British Lung Foundation Breath Easy Club. Every one there that are on a nebilizer said they were told not to use the nebilizer as rescue. So my information is correct in this matter here in the UK. But of course I can't say every Doctor gives this warning. But I have been in several hospitals in the uk and everyone has warned about over medication through a nebilizer. My consultant is well known in the uk as being one of the top Lung experts in this country, and it was him among others who have said that the nebilized medication is far stronger than the inhaled version. Maybe our doctors have different opinions than USA doctors. I also asked him if Spiriva would be any good for me, as you know we have had it here for some time, he said no they only give it to patients in the first stages of emphysema, and once a patient is on a nebilizer they will not consider it. Maybe that's another story. Gordon, England

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A. Hi Gordon, I think we may have a mix-up of terms and equipment. You wrote: "We do not use nebulizers in hospitals here, they connect direct to the neat oxygen system to nebilize the medication and maybe this is the reason why a patient very rarely needs more than one dose of medication when being admitted to A & E." Whether or not the "nebulizer" is connected to the "neat Oxygen system" or to an air compressor, a nebulizer is a nebulizer is a nebulizer. It still uses a solution of bronchodilator medication--the strong stuff--as you say, and you breathe it in over many breathes over several minutes. That it is driven by oxygen in the hospital, makes the strength or effectiveness of the treatment no different from the same thing used at home with an air compressor. In any case, from what you say there, you indeed DO use nebulizers in your emergency departments, as I suggested earlier and as has been confirmed by my contacts in the UK - England, in particular.

I can assure you that from the professional medical literature I have read coming out of the UK, there is no difference from the USA in the 'general' approach to treatment of asthma and COPD. As nebulizer use is about as general as you can get, I still hold your generalizations suspect as what is widely recommended, despite the associations you claim. We ALL warn folks against over use of the nebulizer AND of MDI's. But, we don't warn that the nebulizer will lead to overdose any faster/easier than will MDI abuse. To believe that is rather naive, IMO.

I would also suggest your information on Spiriva may have been badly misinterpreted, as we have hundreds--perhaps thousands--of folks
in Spiriva studies all over the USA and the rest of the world who have been using nebulized medications for quite some time, prior to their entry into the Spiriva studies and they have NOT been excluded simply because they were beyond the first stages of Emphysema. While most of the trials--especially the earlier trials--have required folks to be relatively early in their disease process, the 'target' population runs the gamut to severe, depending upon certain factors, yet to be finalized and certainly will not be determined by whether or not one is using nebulized medication or not. Regards, Mark

Feet and Ankle Swelling

Q. I have severe emphysema and I have never had much trouble with my feet and ankles swelling. But for the past few weeks my feet and ankles are swollen within a couple of hours after I get up in the mornings. The swelling leaves me at night. I mentioned this to my doctor on my last visit and her reply was to take an extra fluid pill. I did this but does not help much. Does any one have this problem???? My cardiologist just finished a complete series of test's on my heart and says' my heart has no problems. Comments appreciated. Thanks Tom Hall WV

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A. Hi Tom, Your cardiologists assessment may reflect only his opinion with respect to your heart as a primary consideration. The congestive heart failure (CHF) that is a secondary complication of COPD is NOT a primary cardiac disease, or condition. Did you tell your Cardiologist about your ankle swelling pattern? Does your cardiologist know you are taking a diuretic. If in view of that information he says your heart has no problems, I would contend that means that "in view of the difficulties your heart has and is up against with your lung disease, it is having no problems contending with them and functioning adequately. That is far from saying, or contending that your heart is free from problems of any kind! Its all a matter of context.

At any rate, when you are experiencing swelling like you describe, then your heart is NOT functioning normally, whether or not it is functioning at its best potential. ONE of your doctors needs to address the problem. BUT, they can't do it without YOUR help!!! You need to watch your weight--daily and maybe even twice-per day--on rising and before retiring--when your swelling is least and worst. If there is significant weight gain from water retention, then more diuretic may not be all that is needed. You need to monitor your sodium intake--difficult as that may be. ONLY you can do that, because ONLY you know how much and what you eat AND how much salt you put on your food. So your action can help your doctors to act appropriately. Also, if you discover you are consuming too much salt (more than 2000 mg/day) or too much water (more than 1.5 L/day) then you will be able to take action to correct the problem yourself! ! ! You may simply need to cut back on fluid intake or salt intake or both!

Take a few days to assess your situation with regard to salt and fluid intake and your weight changes in relation to swelling and let us know what you observe. Regards, Mark

COPD Meds with a Heart Attack

Q. Mark, I became extremely apprehensive after having Combivent and Albuterol MDI's and Nebs removed from my list of meds after a heart attack. To my surprise, I am breathing so much better with only nebulizing Atrovent 4 times a day. (I also have been smoke free for over six months). I admit I used/abused the Combivent MDI (up to 24+ actuations per day). I very often would not take the time to nebulize. Now, I prefer to nebulize.

I still keep a Combivent MDI on the night stand in case I wake up with a plug lodged in my throat. I don't know if I should ever use it though because I'm taking a Beta-blocker for my heart. I don't know what reaction it would have. But then again, in an emergency, what else can I do? John TX

* * *

A. Hi John, Its good to hear you're getting along fine with Atrovent, only. Theoretically, MOST folks should be the same as you. BUT, you describe very well the phenomenon we have observed for years-- the clinging to beta-agonists and the over use of them because of breathing difficulties that are NOT related to factors helped by that drug group. It takes an experience like yours to show the individual that they CAN get along quite nicely--yea, even better--without the beta-agonists, reserving them ONLY for emergent episodes.

You can rest assured that the only likely effect on your beta-agonist use from the beta-blockers is the reduction in its effect. It won't hurt your heart in the doses you are likely to use it. Regards, Mark


Q. Mark--This brings up something I have been meaning to ask for some time. When I was in Burke, my physical therapist kept forcing water on me (I hate water). We had to carry bottles of water with us and take sips from it all the time. She contended that that was my primary problem--that I did not drink enough water--and that if I did, I would cure my congestion. But I had just been told I had congestive heart disease and other people were telling me I should consume less fluid. The other contradiction between lung and heart problems, it seems to me, is that no exercise is too much exercise for the lung patient whereas the CHF patient is told to rest. Can you straighten it out? Ethel

* * *

A. My opinion would be that your physical therapist, while meaning well, was "talking out of school". I would go so far as to say that the physicians who would object were unaware of her practice/instructions. What she was doing is potentially dangerous/harmful to you and other patients who have problems with fluid retention and CHF. Further, recent publications are disagreeing with the old wisdom about the 10 glasses per day of water. Finally, as I have posted before about the study we did years ago in direct query to the "more water intake makes thinner mucus" theory, we did not find any change in mucus viscosity ('rheology' is the fancy term for 'character' of mucus) when subjects were kept restricted on water intake, allowed normal water intake or super-hydrated. All we observed that was statistically significant is that their urine output increased when they consumed increased amounts of fluid and decreased when they were submitted to restricted fluid intake. Further, while the axiom that increasing water/fluid intake will thin mucus secretions and enhance mobility and expectoration is widely published in everything from medical textbooks to popular literature, there is not one shred of empiric evidence to support that axiom. With the danger of over-hydration and CHF consequences, the "wisdom" today is careful fluid monitoring along with salt restriction for those who are labile with CHF and cardiac function-related lower extremity edema. This point was recently reiterated in yet another large study report (I don't have the source at my fingertips right now) and is the recommendation of the AHA, though I don't know if they have issued a new position statement at this point.

In addition to the reaffirmation of fluid and salt restriction in management of CHF, the former rest and relaxation intervention has been heartily replaced with get up and get moving recommendations. Whereas it used to be the wisdom that resting the CHF patient was desirable, now lots of data on effects of exercise has been gathered and analyzed, showing that not only is
exercise (and oxygen, where necessary) effective to improve the condition, but reversal of the cardiac hypertrophy has been observed to some degree AND survival statistics have been observed to improve statistically significantly.

So, you can disregard both of the old theories IMO, in view of the recent and convincing (in my mind) evidence. Regards, Mark

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The above questions are asked by members of EFFORTS on our EMail List. If you wish to join EFFORTS, please go to http://www.emphysema.net/ and you will learn more about us.

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