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Medical Information

 This page is dedicated to Brenda Hoilman, R. N., who left us on November 28, 1998, at the tender age of 50, to be with our Lord and to look down upon us as our Angel of Mercy. This page was started by her as a faithful, caring individual and will continue to carry tips and suggestions from professional folks that donate their time and EFFORTS in helping us to better understand and deal with our disease.

Any information given on this page should be considered as just that......medical information.  It should not be interpreted as medical advice.  "For medical advice, you should always consult your physician."

We would like to give special thanks to Mark Mangus, Sr. RRT,RPFT,RCP, who has contributed largely to the information contained herein.  Mark is our Certified Respiratory Care Practitioner.  Also Sharon Young, our retired RN who also has contributed.

TABLE OF CONTENTS
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Peak Flow Meter


The peak flow device measures the maximum flow with which air can be forced out of the lungs. It is a valuable tool in managing asthma.  Early in an asthma attack the maximum flow may be decreased, and a peak flow meter may help detect an attack in its early stages.

There has been, in the past, some difference in opinion as to it's value in COPD.  However, asthma and COPD are both obstructive disorders.  And they both cause an obstruction to expired airflow.  With asthma, the obstruction is due to airway spasm and inflammation.  With COPD, the obstruction is from air sacs which have lost their elasticity and collapsed....but there is also very often inflammation and some degree of bronchial tube constriction also.

People with emphysema need to forcefully blow the air out in order to empty the lungs.

The peak flow reading  serves as an indicator of lung function and measures the highest flow of air out of the lungs during a forceful exhalation.

In COPD, the peak flow meter can serve these purposes:

(1)  Find out how well medicine is working.  Checking the peak flow reading can give you some definite information to give your  doctor as feedback.  You may be able to say,  ( I am feeling less sob since the medicine was increased,  and my peak flow is staying up around 280)

(2)  Warn of breathing problems before a crisis. Usually we have certain airflow levels that are our normals.  (even though ours are very low in comparison with people who have no lung disease,  they are still OUR own normals)  When we have exacerbations brewing, trouble is not always obvious until the problem is severe.  But when we check peak flows, we may notice a pattern of decreasing peak flow readings, even though there is not yet any congestion or fever.  There may be an infection brewing, or it may be that there is some inflammation.  If we can see those patterns happening, and  call it to our doctors attention, he/she can take some steps to prevent a full blown exacerbation.  The peak flow gives you some very objective data to give the doctor when you call.

(3)  Find out times and patterns of breathing problems:
If used frequently enough to determine patterns, one can often discover that certain things are triggering episodes of more intense SOB.  This type of knowledge can help you to manage your disease, especially environmental factors.  ( I knew I felt bad around perfumes, but after doing some peak flow readings, I discovered that my peak flow reading went down from 30-50 points after I was exposed to perfumes...not good when we are already so limited)

  
WHAT ARE PEAK FLOW NORMAL RANGES?

There appear to be no charts of normal peak flow ranges. Normal people with no lung disease, the  peak flows are much higher than what we can do.

A young non-smoking teen may blow 800 consistently and a young adult in their 20s, moderate smoker, may blow 600.(starting to show some effects already)
 
But the peak flow meter is not really designed to diagnose the degree of lung problem we have.  It is designed to show up alterations from what is your own normal.  That is why you don't find those charts giving us NORMS.
 
We must discover what is our own normal range by using the peak flow 2 or 3 times a day for awhile.  Your normal will soon be obvious to you.
 
Establish your norms then track them.  And use the peak flow for what it was designed for.......to show a downward trend in time to head it off at the pass.


DOES MEDICARE PAY FOR ANY MEDICATIONS AT ALL?*


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.


  Bruises and Bloodspots*

 
  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 following is a testament from one of our members;

"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."

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.
 


About Foot and Leg Cramps*

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.

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)


WHAT EFFECTS CAN PREDNISONE HAVE ON MY EYES?

Prednisone is a wonderful anti-inflammatory drug which can help control our disease. It is a medication very commonly used in the treatment of emphysema.

As much as it helps many of us, it has some potentially serious side effects.

Some of these include eye problems.

Eye problems are more likely to occur with long term use of the drug, but COULD occur with only BURSTS. They are more likely to occur with the oral form of the drug, but are
still fairly common with the long term use of the inhaled steroids.


CATARACTS:

Prednisone can cause cataracts.

Cataracts often present with blurred vision, decreased color perception. Later a white area can be seen on the pupil and double vision may be present.


GLAUCOMA:


It has been discovered that corticosteroids can possibly cause or worsen glaucoma.

Symptoms of glaucoma include pain in the eye, headache, nausea and vomiting, blurred vision, seeing colored halos around lights, diminished vision.


DIABETIC VISION CHANGES:

Long term prednisone use may cause diabetes. One sign of high sugar in the blood is blurred vision. If you are on long term prednisone and develop blurred vision, it could be a problem with high sugar. The more severe problems that diabetes may cause to the eye, retinopathy, could occur later if the problem is not corrected, by keeping the blood sugar down.


SUBCONJUNCTIVAL HEMORRHAGES:


The conjunctiva are mucus membranes of the eye. Subconjunctival blood vessels (those lying beneath the conjunctive) are very tiny and fragile.....and they can break easily. Prednisone weakens the fibers in the walls of these tiny blood vessels and can allow the blood to leak out with any increased pressure....such as coughing, sneezing, vomiting. Ophthalmologists say that these hemorrhages look much worse than they are. But they should always be reported.


DRY EYES:

Prednisone use may also cause a problem with dry eyes. he main symptom of dry eyes is usually a scratchy or sandy feeling that something is in the eyes.

Other symptoms may include.

(1) Feeling of stinging, burning or itching of the eyes.
(2) There may be alternating episodes of very dry eyes and excessive tearing of the eyes.
(3) There may be a stringy discharge from the eyes.
(4) The eyelids may feel heavy.
(5) There may be some redness of the eye.

There are many artificial tears on the market, and available without prescription. One thing to remember is that many have preservatives which may trigger allergic reactions in already irritated eyes.

Newer tear substitutes such as Refresh Tears and Genteal contain preservatives that dissipate upon contact with the eye. The artificial tears should be used according to package directions. A humidifier in the house may be beneficial, particularly in rooms where you spend the most time. Warm compresses can add a lot to your comfort.


WHAT SHOULD YOU DO?

(1) If you are on prednisone, either oral or inhaled, just be aware of the potential problem.
(2) Get regular eye exams if you are on prednisone.
(3) At the first sign of a vision change, make an appointment with your ophthalmologist.

AIR HUNGER?*

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?

Answer:

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 B-U-B-B-L-E-S - - - 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,

Liquid Oxygen (LOX), Compressed Oxygen, and Medicare Reimbursements*

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

What is a CPAP or BiPAP?*

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 Mangus, RPFT, RRT, RCP 
Respiratory Care Practitioner in Pulmonary Rehabilitation 

Some Tips on Using a CPAP*

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

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

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

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

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

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

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

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

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 Mangus, RPFT, RRT, RCP 
Respiratory Care Practitioner in Pulmonary Rehabilitation 

 

Additional Information*

What is the relationship (if any) between your FEV1 percentage and the need for oxygen?

Yes I did address this last week. 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 

Water in Oxygen Lines/Tubing

Water in your tubing is water that your humidifier bottle is putting into your oxygen, but has condensed back out. This can happen for a variety of reasons. Primarily, the oxygen coming out of your concentrator is warmer than the ambient temperature (room temperature).
As the oxygen travels through the tubing it cools not only to the room temperature, but many times to the temperature of the floor. Remember, the floor is the coolest part of the room, unless your heating is through your floors. The cooling of the humidified oxygen results in the "raining out" of the water that the cooler oxygen cannot carry.
Depending on your floor, what is underneath(cellar, concrete slab, or other apartments) and the length of your tubing, your "rainout" may be more or less than others. In my area of the country, my oxygen patients have more problems during the winter months, when the floors are colder. 
There are several solutions. 
1. Your oxygen supplier should be able to get for you a water trap. This is a tube that takes the place of a tubing connector and is usually takes the place of the tubing connector nearest the nasal cannula. This tube collects most of the water that condenses in your line. However, you need to empty it as often as your situation warrants. 
2. Another solution is to keep your tubing off of the floor so that the temperature of the oxygen doesn't cool so much and therefore less water will "rain out." Some people will put cup hooks along the walls where their tubing normally runs and will put the tubing into those hooks as they navigate around the house. There are other ways to accomplish this as well. Many people have gotten very creative. 
3. Assess your need for the humidifier. Many times people don't need the extra humidification, but insist on a humidifier because the hospital that they were in used the humidifier while administering the oxygen. In my part of the country, humidifiers are only used when the oxygen user displays the need for the humidification (excessive dryness of the nose or nosebleeds) or has liter flows in excess of 4 lpm. Many people are fine without the extra humidification and have one less thing (the humidifier) to worry about maintaining. 
Hope this helps. 
John Krainik, CRT 

Shortness of Breath*

John Walker wrote:
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?

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 Y-O-U-R 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 H-O-W you perceive the difference between "windedness", "breathlessness" and "shortness of breath". W-H-E-R-E 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 r-e-a-s-o-n 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 F-O-R you, much as we'd like too.

Best wishes to you all in your quest to move and breathe! ! !
Regards, 
Mark Mangus, RPFT, RRT, RCP 
Respiratory Care Practitioner in Pulmonary Rehabilitation  

Flutter Device/Blowing up Balloons*

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!

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

Pink Puffer/Blue Bloater*

QUESTION I have a question: can anybody give me a complete definition of a "pink puffer" and a "blue puffer" Henry from northern calif.


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 

Why Do Our Feet Swell?*

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! 

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 

OTHER MEDICAL HOAXES*

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

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

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

Air Supply Personal Air Purifier (Medical Hoax)*

ANSWER: Hi Mel, H-O-A-X A-L-E-R-T ! ! ! !

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.

N-O-T-H-I-N-G 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 

QUESTION: 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.

Home Treadmill Exercises*
(Join EFFORTS)

Question   From: Nancy Vogelsmeier  Treadmill Exercises:  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.

Hi Nancy and Folks, 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 

Pulmonary Hypertension- Need for Night time Oxygen*

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 


Hi Sharon, Bless you, my dear. 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 "G-O-O-D" for you! And it makes me downright crazy when those physicians are 'Pulmonary Specialists'!

You asked me to address this. Indeed, I h-a-v-e 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 

What is Hospital Acquired Pneumonia?

Hospital acquired pneumonia is usually caused by a gram negative bacteria. Two distinct epidemiological patterns are important in gram negative bacillary pneumonia.

The first results from aspiration of nasopharyngeal secretions that become colonized by gram negative bacilli during hospitalization. Such colonization is enhanced by prior antibiotic therapy. the most frequent bacteria are usually those that are found in the GI tract.

The second type of gram negative bacillary pneumonia is usually secondary to the use of ventilation equipment. These bacilli are usually environmental contaminants.

Pneumonias caused by gram negative bacilli are characterized by the rapid appearance of necrosis of the lung and are associated with high fatality rates. Most are resistant to antibiotics.
The high use of antibiotics in a hospital makes it a great growth environment for this gram negative bacilli and results in their becoming the predominant bacterial flora in hospitals. This together with a debilitated patient means trouble.

Corticosteroids further depress resistance.

This is why it is so very important that we stay out of hospitals as much as possible. If we must go to a hospital and we do not seem to be getting better or you come home and get worse DEMAND BACTERIAL CULTURES of blood and sputum.
In addition these bacilli frequently colonize without producing infection and that is why they sometimes use a Tran tracheal aspiration to get uncontaminated sputum.

The treatment of this bacterial infection is difficult because of the severe underlying disease (COPD).

When we develop a mild infection it is important that we receive treatment IMMEDIATELY to prevent hospitalization.

One experience that I have seen happen over and over in hospitals is the use of neb. equipment that is just placed back into the pouch that hangs on the oxygen control and is used over and over again. They may run it under the faucet but that is not enough. That, and any product that goes into your mouth should be sterile. That is the reason that blister packs have been developed for meds in a hospital. Nurses do not have to touch a medication, they just hold the blister over the med cup and push it out.

Hand washing in a hospital of ALL personnel who attend to you is VITAL. Not just running hands under water but using soap and washing for a few minutes.
We must take charge of our own medical care and if we are so sick that we are not able then we must teach someone in our family to be aggressive when it comes to our medical care. I hope this helps to understand the probable reason that Mick left us so fast. God rest his soul.
Sharon Young RN, COHN (ret)

See also, http://www.graylab.ac.uk/cgi-bin/omd?flavobacterium 

Loss of Bladder Control*

Question:
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.

Answer:
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:>}

Chronic Bronchitis or Emphysema?*

Question:
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

Answer:

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,
Mark, Respiratory Care Practitioner

Cor Pulmonale and Pulmonary Hypertension

Question:
As I read through my mail I encountered some mention of cor pulmonal and how it is sometimes a problem for us. I've ignored previous info about it cause I didn't have it, but now I guess I should educate myself. I tried to find it at Emphysema.net, but I had a lot of trouble finding my way around the site.

Answer:
Cor Pulmonale (Acute strain or hypertrophy of the right ventricle caused by a disorder of the lungs or of the pulmonary blood vessels) and Pulmonary Hypertension are direct results of the damage done to the lungs. The vessels coming from the right side of the heart are distributed throughout the lungs, where the Red Blood Cells pick up oxygen and distribute it to the body. These vessels are often damaged along with the alveoli where this oxygen exchange takes place. As a result of this damage and our low oxygen exchange area, the blood cannot get through these vessels and pick up oxygen as it should, it backs up in the pulmonary veins causing Pulmonary Hypertension. The right side of the heart continues to try to pump this blood into the lungs but because of the inability of the lungs to accept this blood at the exchange level, it backs up into the right atrium and causes the right atrium to enlarge and eventually Congestive Heart Failure. The best thing that we can do to prevent this is to make sure that there is enough oxygen in our lungs for this exchange to take place. That means keeping our oxygen sats above 90 so that the areas that can exchange oxygen within our lungs, has the oxygen to do this job as well as it can.

Many of us are on diuretics as a result of holding fluids within our tissues.

We must stay in tune to our bodies performance and recognize when changes take place. There are none or few symptoms of Pulmonary Hypertension, It is usually diagnosed via an echocardiogram. There is no cure and until we find a way to heal our lungs and cure COPD we will not be able to cure the Pulmonary Hypertension or Cor Pulmonale. I hope that all can understand this as it is a complex condition to explain and I have tried to simplify it as much as possible. 
God bless 
Sharon Young RN, COHN

Six (6) Minute Walk (Test for Oxygen)*

Question:
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

Answer:
Hi Jack,

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 N-E-V-E-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.

Regards,
Mark, Respiratory Care Practitioner

Common questions and shared effects of COPD*

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!

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

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 (h-o-w 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.

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. Will I start getting worse?

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!

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 u-s-e-f-u-l or helpful purpose. You can live a long time (more than 5 years) with an FEV-1 of less than 20 %.

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!

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

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 come I get all shaky when I take Albuterol?

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.  What causes these severe panic and anxiety attacks?

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, Respiratory Care Practitioner

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