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The

PulmonaryPaperDedicated to Respiratory Health CareNovember/December 2014 Vol. 25, No. 6

All I want for Christmas is my liquid oxygen!

Featuring 03 | Editor‘s Note

04 | Calling Dr. Bauer

18 | Ask Mark

10 | Fibrosis File

18 | Sharing the Health

30 | Respiratory News

Your Health16 | In the Rear View &

On the Horizon

12 | COPD News

13 | Back to Basics: Clearing the Airways

17 | Christmas Quiz

21 | Flu Myths

22 | Stem Cell Replacement Therapy

27 | What to Say and What Not to Say

For Fun28 | SeaPuffer Cruises

Plan a vacation and leave your cares behind you!

We salute couples who have been together in good times and bad! Send us your photo!

www.pulmonarypaper.org Volume 25, Number 6

Table of Contents

Chris Scott

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You’ve suffered long enough. Ask your doctor about TTO2!

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Chris and Scott Peterson of Missouri, who are also on the cover, are childhood sweet-hearts who are still going strong!

We are hiding The Pulmonary Paper logo on our front cover. Can you find it?

November/December 2014 www.pulmonarypaper.org 3

Editor’s Note

Dear Santa,

I have tried to be very good this year! I read a simple little book entitled Live and Learn and Pass It On and identified with many of the observations.

I have learned that every person I have met and talked to had some thing to say that I found interesting or helpful.

Every new place that I visit offers potential for adventure and excitement.I’ve learned that if you stay focused on yourself, you are guaran teed to be miserable.I’ve learned that I did a good job raising my children, seeing the way they live their lives.My whole attitude changes when I get a call or read a note that someone says they appre

ciate me or simply says thank you.I’ve learned that I cannot expect others to solve my problems. When bad times come, you

can let them make you bitter or use them to make you better.I’ve learned that I can keep going long after I thought I couldn’t.Thank you for my friend who is always there for me and

makes me go to the gym when I don’t want to.Santa, I hope to live a very long time without

growing old.Can you please help young people see that cigar

ettes do not make them grown up?Could the people in charge realize it is worth the

extra money to let us use a 3pound oxygen unit rather than a 17pound one?

Can we get more research dollars for COPD, the third leading cause of death?

Rather than have people resist change, can you help them see it is the only thing that brings progress.

Please keep surrounding me with people who are smarter than me.

And Santa, please help us see that regrets over yesterday and the fear of tomorrow will rob us

of happiness we can have today.

Happy Holidays to all! I appreciate your support more than you will ever know!

Happy Holidays from the Belyeas!

add santa hat to celetste pic

4 www.pulmonarypaper.org Volume 25, Number 6

Question for Dr. Bauer? You may write to him at The Pulmonary Paper, PO Box 877, Ormond Beach, FL 32175 or by email at [email protected].

Dr. Michael Bauer

Calling Dr. Bauer …

A s 2014 draws to a close, I thought this would be a good opportunity to give our readers a brief update on what’s new in the world of pulmonary medicine. Here we go:

• Lung Cancer: We are discovering new proteins called driver mutations on the surface of lung cancer cells that can predict a good response to a variety of new cancer drugs. These targeted agents may prolong life and improve symptoms in patients with advanced lung cancer.

• COPD: Every few months I’m seeing new inhalers on the market. Most of them are combination inhalers with a variety of long acting bronchodilators and steroids. Some are just once a day use. Bronchoscopic lung volume reduction is a technique being actively investigated. Introducing a variety of small plugs, mechanical valves and/or coils into the airways by bronchoscopy is a nonsurgical approach that may improve lung function in advanced COPD. The verdict is not in at this time.

• Interstitial lung disease: Two new drugs – Nintedanib and Pirfenidone – have just been approved by the Food and Drug Administration (FDA) and will soon be available. These have been shown to modestly slow the decline in lung function and slow disease progression in IPF but will be very expensive.

• Sleep apnea: A big trend led by insurance carriers is to perform more inhome sleep studies rather than in hospital or clinic for complete polysomnograms. Also a big push for AutoPAP self adjusting machines. Compliance and efficacy are being assessed by “smart card” computer chips or online modem reporting.

• Smoking cessation: Electronic cigarettes (ecigarettes) are a big unknown. They may be helpful as an aid for smoking cessation, but major concerns exist about use of flavored cigarettes in young adults and teens as a gateway drug towards regular cigarette use. Lots of ongoing research.

Best wishes to all our Pulmonary Paper readers for a great 2015. I enjoy my discussions with you. Keep in touch!

Ed’s Note: As a treat for the holidays, enjoy a special clip from Dr. Bauer’s

piano recital! Go to: http://www.youtube.com/watch?v=wkh3onuhkhk


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In the Rear View and On the Horizon

As December 31 approaches, we often

reflect on the year that was and

look ahead to the year that will be.

2014 saw some popular home oxygen sys-

tems receive some notable upgrades as well

as the release of new home oxygen products.

Inogen upgraded their G2 portable oxygen

concentrator (POC) to include pulse settings

ranging from 1 to 6 and introduced a 5-liter

home stationary con-

centrator that weighs

under 20 pounds.

Perhaps one of the

more anticipated

new oxygen systems

was CAIRE SeQual’s

eQuinox POC. Tout-

ed as being the light-

est continuous flow (CF)-capable POC to hit

the market, the eQuinox was released over

the summer as an engineering overhaul of

the popular Eclipse systems. The eQuinox

retained all of the clinical features of the

Eclipse systems, but was about two-thirds

the size and weight of the Eclipse model.

So what might 2015 have in store for

home oxygen users?

Inova Labs will be introducing the

Activox DUO2, which will integrate their

existing LifeChoice Activox pulse flow POC

with a new 5-liter home stationary concen-

trator. Based on current specifications avail-

able on the Inova Labs website, the station-

ary concentrator will likely be very similar

to most existing stationary concentrators

but with one big difference – the Activox

POC will be able to be docked in the DUO2

stationary concentrator, allowing the POC

battery to be charged when the POC is not

in use. Oxygen users who have this system in

their home will be able to easily detach the

POC from the stationary unit for their away-

from-home ambulatory needs. The DUO2

can be likened to home-fill oxygen systems,

where the stationary concentrator gas is used

to fill up small cylinders for portable use, but

instead of cylinders the portable option is a

POC. As of now, it appears the LifeChoice

Activox POC capabilities will not be up-

dated, so be aware that the Activox only

offers pulse settings

of 1, 2 and 3 – there

is no CF option on

the POC – so users

should strongly con-

sider renting or try-

ing out an Activox

POC to ensure the

device is adequately

able to oxygenate

them during their

activities. More in-

formation on the

DUO2 can be found

at www.inovalabs.

com/duo2

MedTrade 2014, one of the larger home care

trade shows in the United States, gave home

care dealers the first glimpse of the updated

OxLife Independence CF POC. The cur-

rent OxLife Independence is similar to

the SeQual Eclipse in oxygen production

capacity, up to 3 LPM CF and common

pulse settings of 1 to 6. The updated OxLife

Independence will be able to produce up to


4 LPM CF, making it the first commercially

available POC to have continuous flow

settings ranging from 0.5 to 4.0 LPM. With

the additional oxygen production capability,

the updated OxLife Independence will also

feature significantly more pulse settings,

ranging from 1 to 15 with dose volumes

ranging from 16mL per breath at the 1 set-

ting to 240 mL per breath at the 15 setting.

Do note that at the higher pulse settings

there may be a breath rate limit; since the

unit will be able to produce 4,000 mL per

minute, the maximum breath rate for the

15 setting will be slightly under 17 breaths

per minute, which is not typical of an active

breath rate. Other promoted features of

the updated OxLife Independence include

improved battery life and quieter operation

at lower device settings.

More information on the upgrades to the

OxLife Independence can be found at www.

o2-concepts.com/dna-technology

On another note as we close 2014, I’d like

to extend my thanks to editor Celeste Belyea

for giving me the opportunity to regularly

write for the Pulmonary Paper, and to you

the readers for your positive feedback and

comments over the last several years. One

thing is missing, though – after writing nu-

merous articles, this column has never had

a title. I’d like to extend an offer to you, the

readers, to give this column a name. Please

feel free to submit to the Pulmonary Paper

or to myself your suggestions, as well as any

questions and/or ideas for future articles.

Happy holidays to you all, and my best

wishes to you for a wonderful 2015.

Ryan Diesem is Research Manager at Valley Inspired Products, Apple Valley, MN. Contact Ryan at [email protected] with questions or com-ments.

What’s in a

Name?

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Mark Mangus, RRTEFFORTS Board

Mark Mangus RRT, BSRC, is a member of the Medical Board of EFFORTS (the online support group, Emphysema Foundation For Our Right To Survive, www.emphysema. net). He generously donates his time to answer members’ questions.

Ask Mark …

Robert from New Mexico was told to gargle with water, every time he uses an inhaler or nebulizer and asks if this is necessary. Mark says, While it won’t hurt to rinse your mouth after using your Spiriva, Albuterol, Formoterol or Salmeterol, it is not necessary to do so. It is the inhaled steroid medications where it is so important to rinse and spit after dosing yourself. The inhaled steroids thwart the natural immunity in your mouth and throat to candida albicans (the yeast organism that causes Thrush). See definition to left.

Virginia W. was wondering if portable liquid oxygen (LOX) devices deliver pulse or continuous flow. She now uses an Eclipse portable oxygen concentrator and would like to try an alternative.

Mark says, The Helios liquid portable is pulse only up to a setting of 4. The larger Marathon does have a continuous flow option up to 6LPM.

There are two Companion series LOX portables that are continuous only. The Companion goes to 6L/min continuous and the Companion T goes to 6, 8, 10, 12 and 15 L/min. Keep in mind that any LOX portable running at 6L/min continuous will not last very long!

The bottom line is that Medicare pays for a stationary (home) source of oxygen and a portable amount for those who qualify. They don’t care if the home care company provides you with LOX and a

concentrator and LOX portable and a POC and tanks or gives you three or ten of each. They pay one amount, no matter what equipment is used or how many.

Beyond that, Medicare says that whatever equipment the company places with you must meet the conditions of the doctor’s

Thrush is an infection characterized by the presence of white, slightly raised lesions in your mouth – on your tongue, inner cheeks, roof of your mouth, gums, tonsils or back of your throat. The lesions may be painful.


Loren doesn’t have a diagnosis yet but recent Pulmonary Function Testing (PFTs) show everything was within normal limits except the Diffusion Capacity which was 69% down from high 80s a year ago. What does this mean?Mark says, Lung Diffusion Capacity testing, or DLCO, measures how well oxygen can move through the lung and into the bloodstream. If your PFTs are otherwise normal, then I would expect that the variation in DLCO is due to what we often see which is momentary variation in that measurement. It is not unreasonable to expect that your next measurement of DLCO could well be back above 80% again.

prescription. If your doctor orders 5 liters, they can’t give you a system that delivers any less than 5 liters. If your doctor orders that you should adjust your oxygen between 3 and 10 L/min during activity to maintain a minimum saturation of 90%, then your company must give you an oxygen system that will deliver 10 L/min. It can be LOX. It can be tanks. Medicare doesn’t care.

Your company’s payment for home oxygen service has dropped to cost, and sometimes below cost, for just the basics. Since liquid oxygen involves visits to your home for refills, this system will be more expensive for the home care dealer. Unless our voice is heard to rethink the cuts Congress and Medicare made as too severe and limiting, it won’t get any better. It’s going to take changes in the law to make things better.

Bonnie from Illinois writes, my young friend is pregnant and has serious asthma. She is no longer able to use her normal meds –Albuterol, both rescue and nebulizer, and Advair. Her obstetrician has suggested she stop her meds, which she has, but this poor girl is really suffering!Mark advises, Your friend should consult with her asthma specialist – who I would think would insist she return to her Advair use. Pregnant mothers should not stop taking Advair during pregnancy as long as the risks outweigh the benefits. If her gynecologist doesn’t know that her symptoms have amplified since she followed his recommendation to stop the Advair, then he/she should also be made aware. If your friend has an asthma attack, the consequences could be fatal. There is not enough evidence to suggest that continuing

to use Advair is harmful to the fetus, especially if the mother’s asthma symptoms worsen while not using the maintenance drug.

She should be using a peak flow meter to check her airflow every day. It is the only definitive way she can safely manage her breathing and know the urgency of taking her inhaled medications.

A peak flow meter measures your peak expiratory flow rate. It may detect worsening lung function even before your symptoms (like coughing or wheezing) appear. When you take your readings daily and see your normal readings decrease, you will then know to take action. A person with wellcontrolled asthma will consistently have peak flows that vary less than 15%.

Fibrosis File

Merry Christmas! Thanks to input from people dealing with the disease, the Food and Drug Administration (FDA) has approved two new

drugs, Nintedanib (tradename Ofev® from Boehringer Ingelheim-BI) and Pirfenidone (tradename Esbriet® from InterMune), to help Idiopathic Pulmonary Fibrosis (IPF). It is the first time the FDA has approved any treatment for IPF.

ple who took Nintedanib had diarrhea.

That might sway the physician to go with

Pirfenidone instead of Nintedanib.

You probably won’t notice a big differ-

ence in your condition when you start these

drugs. What they have been proven to do is

to reduce the rate of deterioration in your

lung which is difficult to predict and differs

in each person.

Hopefully one day we can look back and

see people survived longer and performed

better after taking these medicines.

This is a long overdue good start in treat-

ment options for IPF!


The pharmaceutical companies have been

doing clinical trials in IPF for about 15

years. Most of these trials have been neg-

ative and no potential medication has ever

been approved by the FDA. Earlier this year,

successful studies on the two drugs were

published in the New England Journal

of Medicine which helped convince the

FDA to approve these medications. The

drugs hope to lower the rate of lung function

decline, as well as decrease acute exacerba-

tions (flare-ups).

The drugs are used separately. It is un-

known how the two drugs might interact

with one another. Both have possible GI

side effects as nausea and vomiting. Studies

combining the drugs are sure to be in the

future as a possible treatment for those

with IPF.

We don’t know whether one is better

than the other. The recommended dose for

Pirfenidone is three capsules three times a

day, whereas Nintedanib, it is one capsule

twice a day. Almost two thirds of peo-

The Pulmonary Fibrosis Foundation has

a Patients Support Community where mem-

bers have been discussing gifts for the person

who has IPF. You might want to leave this

list someplace where the right people can

see it!

• I would relish “homemade” coupons to

run an errand, pack and take a package

to the post office or even help decorate

or put away decorations, yard clean-

up or gardening. Maybe even doing

laundry, changing sheets on the bed, or

putting away clean clothes. I find the

gift of someone’s time is invaluable and

precious.

• A gift card to the grocery or pharmacy

would be most welcome. For my friends

with pets, I buy three or six months

worth of their pet’s routine meds (like

Trifexis), or put a credit on their account

with their vet.

• Most people with PF agree that we feel

colder than most. Soft, warm socks,

lounge pants or a cuddly warm throw is

a good non-food gift. Gloves or mittens

that can convert to fingerless would be

nice. A selection of teas and hot choco-

late packets are handy and useful.

• Something homemade is always good.

• Gift cards to restaurants, especially

restaurants that deliver.

• The best gift given to me in this past

year has been my iPad.

• A prepaid gift of housecleaning. My

helper uses only vinegar to clean as most

household chemicals really bother me.

• I watch a lot of movies, documentaries

and read iBooks. You can’t go wrong

with prepaid gift cards for iTunes.

• I would adore it if someone sent a mas-

sage therapist to my home. I don’t go out

for massages because I’m so exhausted

getting there and getting back that it

spoils the whole experience.


Unfortunately, the medication is very

expensive – without insurance it would cost

$92,000 per year! We have heard of people

getting Pirfenidone (Esbriet) for $25/month

after approval. If you and your doctor have

decided this is the drug that is right for you,

you may be eligible for the Esbriet Start

Now program to get your first 45 days of

therapy at no cost. Visit www.esbriet.com/

careconnect/patients on the Internet or

call 1-844-372-7438 for more information.

Our Canadian friends have been paying

approximately $150 for a month’s supply

of 90 pills. Esbriet has been available in

Canada since 2012.

Boehringer Ingelheim-BI has a support

program called OpenDoor that you can

find out more about financial help for

Ofev at 1-866-673-6366 or www.ofev.com/

patient-support.php


John Walsh, President of the COPD Foun-

dation, is asking all people with COPD to

become involved with the Patient-Centered

Outcomes Research Institute – PCORI.

The nonprofit agency is funded by imposed

fees on health insurance policies. PCORI’s

purpose is to assist people involved in health

care – the patients, medical personnel, pur-

chasers and policy makers – to make better

decisions. The information learned from en-

rolled people will help to prevent, diagnose,

treat, monitor and manage disease. Anyone

over the age of 18 with a confirmed diagno-

sis of COPD is eligible to enroll.

The COPD Patient-Powered Research

Network will be part of other registry

networks and together will be called the

National Patient Centered Clinical Research

Network. To join, call the COPD Founda-

tion at 1-866-316-2673 or go to www.copd

foundation.org and click on the ‘Research’

tab. The registry form will ask about your

symptoms, breathlessness, smoking history

and other medical problems. They are hop-

ing to enroll 75,000 individuals.

The COPD Foundation has also launched

an interactive social network on their web

site so you could interact with others. Visit

the main web page at www.copdfoundation.

org and click on the ‘360social’ tab to learn

more!

Your Voices Count!The FDA published a Federal Register

notice announcing the establishment of a

public docket for comments on FDA activ-

ities performed under the Food and Drug

Administration Safety and Innovation Act

(FDASIA), Patient Participation in Medical

Product Discussions. They would like to

have a more systematic approach to includ-

ing a patient consultant voice earlier in the

product development process.

There are various ways that a patient or

caregiver may participate. One program

that FDA has managed for many years is the

patient representative program, where

patients or their caregivers participate as

members of FDA’s therapeutic advisory

committees to review important questions

about safety and efficacy of products un-

der consideration for marketing approval

with other members of various FDA expert

advisory committees.

For more information email Andrea

Furia-Helms at [email protected]

or write to her at:

Andrea Furia-Helms

Food and Drug Administration

10903 New Hampshire Ave.

Building 32, Room 5319

Silver Spring, MD 20993-0002

COPD News


The body’s respiratory system has sev-

eral ways to keep itself clean. When

you think about it, the lungs are the only

internal organ to have contact with the

outside world!

Your nose is the first defense. As you

breathe in, large particles are stopped in the

hairs while mucus traps smaller particles.

The nose, trachea (or windpipe) and much

of the lower airway are lined with cells that

produce mucus to trap the smaller particles

that have gotten through. These are called

goblet cells. Cells that have cilia, tiny hairs

that beat upward to clear unwanted debris,

are also present. They move the unwanted

particles to your throat so you can cough

them out. When you smoke, the cilia do not

work effectively.

These two types of cells gradually disap-

pear as the airways get smaller; they aren’t

present in the alveoli – the air sacs where

you exchange fresh oxygen for carbon

dioxide brought to the lung from the body.

The airways are also surrounded by

smooth muscle that constricts to keep

harmful particles from getting deep into the

lungs. You may have felt this when exposed

to an irritant in the air as smoke, aerosols

or cold weather.

When you cough, the fast expiratory flow

rate and positive pressure actually shear

the mucus free from the airway walls and

carry it out. The upper airway has receptors

that react to irritants and trigger the cough

reflex.

You take in a deep breath and the vocal

cords (or glottis) are closed to build up a

high expiration pressure in your lungs. The

cough reflex initiates an abrupt opening of

the glottis, which produces an explosive

blast of air from the lungs that propels the

mucus out. People with Chronic obstructive

pulmonary disease (COPD) are at a disad-

vantage as they often cannot take a large

breath in to be effective and their weak

respiratory muscles cannot build up a high

pressure.

COPD is characterized by an increased

number of goblet cells that secrete excessive

amounts of mucus. The airways become

chronically inflamed and their di-

ameter will become smaller. If you

have had a productive cough for at

least three months in two consecu-

tive years, you may be diagnosed as

having chronic bronchitis.

Bronchiectasis is a respiratory

disorder in which your airways

become dilated and distorted, al-

lowing mucus to pool as the cilia

Back to Basics

Clearing the Airways

Continued on page 15


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cannot clear it. This can make you vulner-

able to infections.

Cystic fibrosis (CF) is a genetic disorder

characterized by overproduction of thick

mucus affecting the respiratory, digestive

and reproductive systems. People who have

CF must undergo a daily regimen to remove

secretions and maintain lung function;

otherwise, they’re prone to developing po-

tentially fatal respiratory infections.

Pneumonia causes pooling of secretions

in the air sacs and lower airways, leading to

decreased oxygen levels and lung collapse.

Bacterial or viral pneumonia develops when

a person breathes in foreign matter that

breeds infection.

Neuromuscular diseases may also place

people at higher risk for developing in-

creased pulmonary secretions. Examples in-

clude myasthenia gravis, which results from

a breakdown in communication between

the nerves and muscles, and Guillain-Barré

syndrome, an acute disease that produces

fever and an immune attack on the nerves.

The muscle and nerve problems can reduce

effectiveness of your cough, causing you to

retain more secretions.

Contributing factors to excessive secre-

tions include smoking, air pollution and

occupational exposure to irritants. Having

anesthesia or sedation may depress the

body’s cough reflex.

We are excited to be able to work

with Monaghan Medical Corporation

to provide the Aerobika® to people who

struggle with secretions.

When you breathe into the device,

you will encounter some resistance.

This resistance will create positive pres-

sure inside your lungs which will hold

your airways open. Think of when you

blow up a balloon, it is the positive

pressure that holds the balloon open.

Inside your lungs this positive pressure

opens up the small airways that may be

blocked by mucus.

The Aerobika® has a valve that

switches quickly between higher and

lower resistance. This vibration – or

oscillation – inside the lungs loosens

and seems to decrease the thickness

of the mucus. So between the positive

pressure opening the small airways and

the oscillations loosening the mucus,

it will be easier for you to raise the

secretions. Getting out excess mucus

improves breathing and reduces the

chance of infection.

The Aerobika® is offered to our mem-

bers at the reduced cost of $79.95

plus $5.95 for shipping. If you would

like to order, please call 1-800-950-

3698. Website ordering will be available

soon.

Continued from page 13

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1) What were the names of the Three

Wise Men?

2) What is the best-selling Christmas

recording of all-time?

3) How many sides does a snowflake

have?

4) ‘Good King Wenceslas looked out on

the Feast of Stephen’. When is the

‘Feast of Stephen’?

5) If you received all of the gifts listed

in “The Twelve Days of Christmas”

song, how many presents would you

have?

6) What is a Christmas Cracker?

7) From what material were the first

artificial trees made?

8) What county lays claim to Christmas

Island?

9) What state was last to declare Christ-

mas a holiday in 1907?

10) Traditionally, where does the ‘Xmas’

come from?

Answers will appear in our next issue!

Do you know where the origins of these Christmas references began in our Christmas pop culture? Test yourself with these questions!

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This holiday season, remember to plan

and pace! Plan your activities in advance

so you have the time to pack your clothes,

or get all the gift wrapping supplies or rec-

ipe ingredients without being rushed. Pace

yourself to go as fast as you feel comfortable

going!

Be careful of strong smells during the

holidays. Air fresheners with balsam scents

can be so strong it can send sensitive airways

into spasm. The same holds true for candles.

When getting your decorations out from

their storage space, be careful of the dust

that may have gathered on them.

Be careful not to eat too much, even

though this is much easier said than done!

Sharing the Health!

When your stomach is distended and

pushes up on your diaphragm, it will

make it harder to breathe.

If you are lucky enough to celebrate

with family and friends, try to simply

enjoy it. If there have been strained rela-

tions in the past, try and forget it while

together.

Get in the spirit! Dress your inhaler,

nebulizer or oxygen units up for Christ-

mas!

Volunteer in any capacity to help

someone as a gift to yourself.

Enjoy reminiscing about the good

memories you have and think about the

ones to come!

I keep one and two pound weights next

to the chair where I watch TV and try and

do arm exercises while sitting.

It motivates me to also be involved with

others in a yoga class – they have low cost

sessions at my local senior center.

Susan A.

Palm Coast, FL


Want a simple often forgotten exercise?

Take a walk! With a friend, neighbor, family

member, your dog – around the block or

any part of it, around the mall or around

your house – with or without headphones

for music!

Just make sure you have comfortable

shoes on. Vary your pace – step it up a bit

and slow back down. I like to use a pedom-

eter so I can track how many steps I have

gone. I am lucky enough to live in Florida

so we can walk outside most of the year.

I have written my steps in a journal every

day for over a year.

Mary, Largo, FL

Ann O. of Maryland saw an advertise-

ment for a Salt Room that said it would

be beneficial for people with lung disease.

An article in the Wall Street Journal several

years ago reports owners of indoor salt

rooms say small salt particles can soothe

respiratory and skin conditions. Scientific

evidence is scant and some doctors urge

caution for asthmatics. Salt is an irritant that

could cause airways to constrict.

The experience of breathing in salt air is

designed to mimic salt caves, which have

been considered therapeutic in Eastern Eu-

rope. Sometimes called halotherapy cham-

bers, the walls and ceilings are salt-coated,

and grains are often scattered a few inches

deep on the floor. Some facilities just pile

up salt in the room, while others use special

“salt generators,” machines that grind the

salt into very tiny breathable particles and

blow it into the air. Salt is thought to help

respiratory conditions by drawing water into

airways, thinning mucus and improving the

function of cilia, the small hairs that help

move mucus out of the lungs.

The cost averages about $50 for a one

hour session. The spa experience can be re-

laxing in itself. If there is a salt room in your

area, get your physician’s opinion about it!


Sharing the Health! continued

Rhyming answers to the Halloween

quiz from our last issue:

• What do you call an Abominable

Snowman named Elizabeth? Betty

Yeti

• What do you call a cart used by a

monster who breathes fire? Dragon

Wagon

• What do you call a fake monster

wrapped in linen? Mummy Dummy

• What do you call a sugary candy?

Sweet Treat

• What do you call a serious monster

made of clay? Solemn Golem

• What did the grave keeper use to

sweep the graveyard? Tomb Broom

• What is a fast prank? Quick Trick

• What is a scare in the evening?

Night Fright

• What is a great incantation? Swell

Spell

• What is a thin furry animal that flies?

Flat Bat

The United States Department of Ag-

riculture has launched What’s Cooking?

USDA Mixing Bowl. It is a resource for

healthy recipes for one person or a large

crowd. You will find many cookbooks

including one with lunch-time ideas and one

from the White House. You will be able to

create healthy recipes on a budget and save

them in your own personal cookbook. Get

started with Holiday Recipes at http://www.

whatscooking.fns.usda.gov/

Smoking PreventionIn the tobacco settlement of 1998, $206

billion was pledged to each state to fund

anti-smoking campaigns. This year only

1.9% of the money was spent on preven-

tion. The rest was spent on everything from

fixing potholes to building jails. Nine states

have even issued bonds backed by future

payments. Where did we read these sad

facts? From Mr. Butts, a character in Garry

Trudeau’s comic strip Doonesbury! Pay-

ment will continue through the year 2025.

The state of New Jersey has been awarded

$7,576,167,918.47 so far – not one penny

has been spent on smoking education.

Cindy G. from NY has a tip for those who

have tried DaliResp – a medication used to

prevent flare-ups of COPD. “I was getting

nauseated when using it when my doctor

suggested I take half the pill on Monday,

Wednesday and Friday for a week. The next

week I was to take a full pill on those days.

When I tolerated this much better, we went

to the normal dose of one pill every day.

Here’s hoping I have a hospital-free winter!”


COPD Advocate!Since January

2006, Grace Anne

Dorney Koppel

has served as a

national spokes-

woman and patient

advo cate for the

National Heart,

Lung, and Blood

Institute (NHLBI)

to increase awareness of COPD. Dorney

Koppel is a practicing attorney and business

manager for her husband, former Nightline

anchor, Ted Koppel.

She is president of the Dorney-Koppel

Family Charitable Foundation, one of whose

missions is to provide start-up funding for

pulmonary rehabilitation centers.

She advises others that doctors can give us

the tools to treat our disease, but if we don’t

use them properly, the best tools can’t help.

Doctors can prescribe inhalers to open our

airways, but if we don’t use those inhalers

on time and follow the directions on exact-

ly how to use them, they’re going to be of

limited help. Doctors can recommend an nu al

flu shots and getting the pneumonia vaccine,

but we’re the ones who have to do it.

Perhaps the best advice I received from a

doctor was to exercise. Understand, though,

we’re not training for the Olympics. We’re

trying to get as much as we possibly can out

of a damaged set of lungs

When I was diagnosed with COPD, I was

in a wheelchair. My lung capacity was at 26

percent of predicted capacity. I was told I’d

probably be dead by 2006. I’m still here. My

predicted lung capacity is at 50 percent. I

walk a couple miles at least five days a week.

Grace Anne Dorney Koppel

Myths Surrounding the FluTara Haelle is the author of an Internet

blog at www.RedWineandAppleSauce.com

for parents. She recently wrote about the

myths and misinformation about the flu vac-

cine that people still continue to believe. She

backs each one up with medical evidence.

We hope you will encourage others to get

their flu vaccination to help stop its spread!

1: The flu vaccine gives you the flu or

makes you sick. (No, it doesn’t.)

2: Pregnant women should not get the

flu shot. (They should.) The flu shot

can cause miscarriages. (It doesn’t.)

Pregnant should only get the preserva-

tive-free flu shot. (Nope.)

3: Flu vaccines don’t work. (Um, they do

work.)

4: Flu vaccines make it easier for people

to catch pneumonia or other infectious

diseases. (No, they make it harder.)

5: Flu vaccines cause vascular or cardio-

vascular disorders. (No, they don’t.)

6: The flu vaccine weakens your body’s

immune response. (It actually strength-

ens it.)

7: The flu vaccine causes nerve disorders

such as Guillain-Barré syndrome. (Ex-

tremely rarely – and more commonly

with flu infections.)

8: People don’t die from the flu unless

they have another underlying condition

already. (Actually, healthy people do die

from the flu.)

9: The flu shot doesn’t work for me,

personally, because last time I got it,

I got the flu anyway. (It still reduces

your risk.)

10: I never get the flu, so I don’t need the

shot. (You can see the future?)


Stem cell replacement (SCR) therapy

for a wide variety of medical diseases

has been a topic of discussion for

many years now. The term “stem cell” first

appeared in the scientific literature as far

back as 1868. A German biologist named

Ernst Haeckel used the term to describe the

single-celled organism that acted as an ances-

tor cell to all living things in history. Jump

forward to August 9, 2001 when President

George W. Bush signed an order authorizing

the use of federal funds for research on a

limited number of existing human embryon-

ic stem cell lines.

In January of 2009 the Geron Corpora-

tion announced the FDA’s announcement

of approval for a limited phase 1 trial for a

new treatment of spinal cord injuries based

entirely on human embryonic stem cells.

Later that year, President Barack Obama

signed Executive Order 13505 which loos-

ened restrictions on human embryonic stem

cell research. In July of 2009 the NIH issued

revised guidelines for federal funding for

stem cell research. Currently the National

Institutes of Health approves of at least 13

new human embryonic stem cell lines for

federal funding.

Replacement TherapyWill the Real Stem Cell Please Stand Up?

After a hundred and fifty years and many

millions of research dollars spent … what

do we know about stem cell replacement

therapy, specifically its possible role in lung

disease? Just exactly what is a stem cell?

Stem cells are found throughout the body

and have several main characteristics:

1. They can renew themselves by simple

cell division;

2. They can differentiate themselves, be-

come different in the process of growth

or take on properties of several different

cell structures and tissues based on need;

3. They can be transplanted into other

organisms where they will continue to

divide and differentiate.

Adult stem cells can be found in the skin,

bone marrow, brain, blood vessels, liver and

skeletal muscle. Theoretically, stem cells can

be used to heal, or even regenerate, damaged

tissue. It was believed that there were no

stems cells in the lungs themselves. Recently

researchers at Brigham Women’s Hospital

found stem cell evidence in 12 adult donor

lungs and nine lungs from fetuses that had

died of natural causes. And much to every-

one’s amazement, these stem cells were able

to divide and form new lung structures!

Stem cell replacement therapy is not being

offered to patients with any form of lung dis-

ease in the United States. Stem cell pioneers

see this therapy as perhaps a promising new

direction to take in finding new ways to treat

all lung disease, including COPD. Finding

adult stem cells in adult human lungs elim-


inates at least one of the powerful ethical

dilemmas concerning stem cell replacement

therapies – the need for fetal blood from

aborted fetuses. In the past five years stem

cells have been harvested primarily from

bone marrow. The harvested cells can then

be returned to the lungs via intravenous or in

some cases, nebulized back into your lungs.

sible that over time stem cell therapy could

accelerate the regeneration of the alveoli and

blood vessels of the lungs. Much of the hope

for beneficial effects has actually been seen

in mice. It is a huge leap to speculate on any

possible effects on the human lung, based on

itty bitty mice lungs.

So why aren’t there hundreds of studies

being done all over the world on stem cell

therapy? We must begin all discussions with

costs and end with return on investment.

One of the more controversial aspects of

SCR therapy is the wide variation in costs.

Costs at SCR centers show a range between

$6,000 to a whopping $64,500! The vast

majority of these centers reside outside the

continental United States. These fixed costs

do not include transportation, hotel or food

expenses. SCR centers can be found all

over the world. As might be expected, the

therapy is not covered by any known health

insurance plan.

The American Lung Association’s State-

ment on Stem Cells and Cell therapies for

Lung Diseases states, “As yet, there is very

little known about the short- and long-term

effects of administering any type of stem

cell therapy to patients with lung diseases.

At present there are only a small number of

approved clinical trials in the United States

and Canada. We are hopeful there will be

more in the future. However you may come

across information on the internet or other

sources about stem cells being administered

to patients with lung disease. We caution all

patients to carefully consider the claims of

benefit being made by many of these pro-

It is much safer to replace your own stem cells than to use a donor’s stem cells.

There is a great deal of controversy

regarding the use of stem cell therapy to

treat COPD. For stem cell treatments to be

clinically significant, many millions of stem

cells need to be transplanted back into the

designated recipient. Harvested stem cells do

not reproduce without outside manipulation

to produce even larger quantities. The FDA

says that manipulating naturally harvested

stem cells with other agents technically turns

the stem cells into prescription drugs, which

will bring more regulation.

How exactly can stem cell therapy

theoretically help patients with lung

disease? It seems possible that there may

be anti-inflammatory benefits to stem cell

therapy. It is entirely possible that stem cell

therapy may actually trigger the production

of reparative growth factors. It is also pos- Continued on page 24


grams as they have not been substantiated.

Because of the potential for harm, the lack

of any proven benefit, and the high fees that

many of these programs charge, we caution

you not to participate in these or any other

comparable unauthorized or unapproved

stem cell administrations, unless indepen-

dent, credible, reliable and objective sources

of information are available to substantiate

the information and claims being made.”

The ALA recommends the International

Society for Stem Cell Research (ISSCR) as a

reliable source for information. If you’d like

more detailed information please visit www.

closerlookatstemcells.org.

ISSCR, in its recently published hand-

book, tells us, “The ISSCR is very concerned

that stem cell therapies are being sold around

the world before they have been proven safe

and effective. Stem cell therapies are nearly

all new and experimental. In these early

stages, they may not work, and there may

be downsides. Like any new drug, stem cell

therapies must be assessed and meet certain

standards before receiving approval from

national regulatory bodies to be used to

treat people.”

This leads me to a topic sometimes

known as “Stem Cell Tourism.”

Stem cell tourism is when people travel

to another country to receive treatments

unavailable to them at home. It exists chief-

ly because most stem cell “treatments” are

unproven and not readily available from rep-

utable local medical services. Stem cell tour-

ism is sustained because of a religious-like

belief in the promise of the regenerative

powers of stem cells.

Continued from page 23

Medical Tourism is also becoming

popular with United States companies.

We learned of a furniture and auto

parts manufacturer in western North

Carolina who gave employees a choice

for their surgery: Pay a co-pay in the

United States or have the procedure

done abroad for free. One lady had

weight loss surgery and another man

had a knee replacement at a private hos-

pital in Costa Rica. Nearly one million

Americans go overseas for procedures

every year, according to the U.S. Centers

for Disease Control and Prevention.

While it all sounds too good to be true,

medical experts cautioned that there

are serious concerns about “medical

tourism” and having procedures done

overseas. Glenn Cohen, co-director of

the Petrie-Flom Center for Health Law

Policy at Harvard University, said there

is a risk of post-operative complications

and said there have been documented

cases of people dying or developing in-

fections after having surgeries in foreign

countries.

The problem of “questionable” stem cell

clinics has been growing over the past five to

10 years. Stem cell centers can be found in


many countries around the word. Since they

are outside the purview of the FDA, they can

make all kinds of claims and offer stem cell

treatments for fatal or incurable diseases like

ALS, spinal cord injury and even strokes.

Targeting mostly affluent westerners, costs

can easily exceed $100,000. Look closely at

the various Internet ads for stem cell centers.

You will most commonly find testimonials

from patients who have had near miraculous

responses. A logical question might be “Why

not then publish your data and undergo

rigorous peer review?” It is not unusual to

find stem cell centers just over the border

from modern medicine practiced here in the

United States. Mexico is convenient for both

medical staff and most patients. There are

around 20 stem cell replacement clinics in

Tijuana alone. Are they selling desperate pa-

tients a 21st century version snake oil? There

will always be someone who swears they got

better from whatever ailed them in the first

place by taking a couple of teaspoons. You

can read testimonial after testimonial on the

websites of the replacement centers describ-

ing fantastic results. It would seem there is

no better indication for Caveat Emptor – Let

the Buyer Beware!

After consulting with many experts, they

are not aware of any stem cell research

being done. This does not mean that some-

where within the academic community of

the United States there isn’t solid research

happening as I write this. Undoubtedly there

are legitimate studies being done.

Stem cell therapy for lung disease is in its

infancy. Theoretically it has the possibility

of bringing great hope to many patients

who have exhausted other forms of medical

therapy to treat their lung disease. On paper,

stem cell replacement therapy looks like it

may be the next “BIG” thing. However, the

biochemical, and technical bridges that need

to be crossed are substantial.

Do you remember when Fen-phen was

the hottest new diet pill? It was actu-

ally on the September 1996 cover of Time

magazine, the same year it was placed on

the market. Sales in that first year were $300

million as more than 18 million prescriptions

were filled. Fen-phen was pulled off the mar-

ket in September 1997 by the FDA as there

were at least 75 reports of Fen-phen induced

heart injuries. Some patients had taken the

drug for as little as a month and developed

serious cardiac complications including the

uni formly fatal Primary Pulmonary Hyper-

tension.

Let us heed the message so powerfully sent

by the Fen-phen disaster. Stem cell research

is so very promising in the possible treatment

of so many diseases and chronic conditions.

If you or a loved one is contemplating stem

cell replacement therapy, spend the time

investigating your particular situation. Make

sure you meet and talk with your family

physician, specialist, and certainly spend

your time wisely in gathering your data.

Happy Holidays!

John R. Goodman BS RRT is Executive Vice President of Technical / Profes -sional Services at Transtracheal Ser-vices, Denver, CO, who says “All You Need Is Love!”


Readmission PenaltiesMore than 2,600 hospitals have been fined

because too many Medicare patients being

treated for heart failure, heart attack, pneu-

monia, elective hip and knee replacement

readmissions and chronic lung disease. As

What Exactly is Ebola?The American Association for Respiratory

Care tells us the first case of Ebola outside of

Africa was reported in Dallas, Texas earlier

this year. Ebola is a rare and deadly disease

caused by infection with a strain of Ebola

virus. The 2014 Ebola epidemic is the largest

in history, affecting multiple countries in

West Africa. The risk of an Ebola outbreak

affecting multiple people in the United States

is very low.

The virus is spread from human to human

by direct contact with the blood or body

fluids of a person who has been infected with

Ebola. Needles and syringes that have been

contaminated with the virus can be a source

of transmission as well. Ebola is not spread

through the air, water, food or mosquitoes.

It can be spread by infected animals.

First symptoms are the sudden onset of

fever, fatigue, muscle pain, headache and

sore throat. This is followed by vomiting,

part of their Hospital Readmission Reduc-

tion Program, Medicare reduced payments

to hospitals that had high readmission rates.

The program intended to provide incen-

tives for hospitals to reduce readmissions

and improve the quality of their care, but

research has shown that patients are often

readmitted for reasons beyond the control

of hospitals. Poor or medically complex

patients are at a higher risk for readmissions

because of socioeconomic and health factors.

If patients can’t afford medications, or have

unstable housing situations, they may end

up being readmitted. No interventions to

date have effectively reduced COPD read-

missions, so it’s unclear what a hospital can

do to prevent them.

diarrhea, rash and symptoms of impaired

kidney and liver function. The symptoms

will not show up right after exposure, most

people show signs and symptoms around the

eighth to tenth day after exposure.

The Centers for Disease Control and

Prevention states, “Recovery from Ebola

depends on good supportive clinical care

and the patient’s immune response. People

who recover from Ebola infection develop

antibodies that last for at least 10 years.”


What to Say and What Not to Say!

Don’t say this:You don’t look sick. (We are not quite

sure what “sick” looks like.)

You’re too young to be sick. (Like you

have some control over this!)

Don’t worry, everyone gets tired.

(There are different kinds of tired –

tired from running a race or tired from

taking a shower.)

You’re just having a bad day. (They

sound as if they are brushing off your

symptoms.)

It must be nice not having to go to

work. (They don’t know how much

you miss it!)

You need to get more exercise. (Good

idea but they sound like this is going to

be the cure for everything.)

It could be worse. (And it could be

better!)

I’m sorry, or You’re so brave. (Don’t

pity me, just support me!)

Just push through it. (Do I have an-

other choice?)

It will get better! (Unless they have a

cure we don’t know about, we would

rather be the best we can with what

we have!)

Have you tried … My second cousin

has lung problems and is doing great!

(Just smile and agree to try whatever

they suggest you try.)

The worst thing you can say to some-

one who is coughing or short of breath

… Are you okay?

But do say or do this:Can I come over and hang out? or Can

I bring you food? or Can I come over

and help out around the house?

I know how hard you are trying. I

believe in you.

A call, email, card or text message just

to let you you know they are thinking

of you.

You are so strong. This must be frus-

trating for you.

How does it feel when …? Tell me

about …?

How can I help?

Don’t feel bad if you have to cancel

plans at the last minute, I understand.

Let’s pencil them in.

Sometimes the best thing you can say

is nothing – just listen.

I missed you when you weren’t able to

come to the event.

Forget the guilt about smoking – this

isn’t your fault.

I wish I knew what to say, but I care

about you and I’m here for you.

We bet you have heard many of the comments that are listed here. People mean well, but many times don’t understand what they are really saying to a person dealing with a chronic medical condition! Are you nodding your head in agreement as you read?

October 18–28, 2015 Take this incredible 11-day journey round trip from Fort Lauderdale to the Panama Canal – an undisputed bucket list trip aboard the Coral Princess!

Panama Canal 11 DAYS

July 25–August 1, 2015 Explore Alaska’s Inner Passage, round trip from Seattle on our annual vacation to Alaska, aboard Holland America’s Westerdam!

Alaska Inner Passage 7 DAYS

Mexican Riviera 7 DAYS

West Coast Departure

Visit www.seapuffers.com for more information!

January 17–24, 2015 Start the New Year right with a 7-day cruise on the Grand Princess, round trip from Los Angeles. Enjoy relaxing sea days and visits to Puerto Vallarta, Mazatlan and Cabo San Lucas!


March 20–30, 2015 Enjoy 10 days of Spring on Holland America’s Noordam, leaving round trip from Fort Lauderdale.

Oxygen Guru Ryan Diesem will be our guest speaker!

Southern Caribbean 10 DAYS

GIVE THE GIFT OF A LIFETIME!

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Respiratory NewsTreatment with 400 mcg Tudorza Pres-

sair – aclidinium bromide inhalation powder

– daily over a year-long period appears to

bring relief of symptoms associated with

COPD. Findings were presented at the 2014

Annual Meeting of the American College of

Chest Physicians.

An FDA advisory committee voted that

Varenicline (Chantix), a drug to help people

stop smoking, should continue to carry a

boxed warning about the risk of side effects,

with several panel members suggesting it

should be strengthened.

Chantix is not addictive but some people

may experience irritability and sleep distur-

bance if the drug is abruptly discontinued.

Psychiatric symptoms such as behavioral

changes, agitation, depressed mood and

suicidal behavior have been reported while

using Chantix.

The drug’s effectiveness was not ques-

tioned.

A new study, ‘Continuing to Confront

COPD International Patient Survey: Meth-

ods, COPD Prevalence and Disease Burden

2012–2013,’ published this year in the Inter-

national Journal of COPD, puts a new face

to the disease – and it is a feminine one. The

study reveals that COPD rates in the United

States are higher among females than males.

Just so you know, the National Institutes

of Health published a report that states there

is unequivocal evidence that habitual or

regular marijuana smoking is not harmless.

A caution against regular heavy marijuana

usage is prudent. The medicinal use of mar-

ijuana is likely not harmful to lungs in low

cumulative doses, but the dose limit needs

to be defined.

Recreational use is not the same as medic-

inal use and should be discouraged.

Even though it doesn’t get much publicity,

lung cancer is the leading cancer killer for

both men and women in the United States.

Medicare recently determined that people

who meet three criteria: 55 to 74 years of

age, a smoking history of 30 pack years, and

still smoking or have quit smoking within

the last 15 years are considered high risk

and will be eligible for an annual low-dose

CT scan. Medicare also proposes high risk

individuals will need to go to a radiology

imaging center whose experts have signifi-

cant experience in recognizing lung cancer

on CT scans. Show your support for lung

cancer screening with the American Lung

Association by going to this website http://

bit.ly/1EmKM9M


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I I

The

PulmonaryPaperDedicated to Respiratory Health Care

Dedicated to Respiratory Care

Volume 25, No. 6

November/December 2014

The Pulmonary Paper PO Box 877Ormond Beach, FL 32175 Phone: 800-950-3698Email: [email protected]

The Pulmonary Paper is a 501(c)(3) not-for-profit corporation supported by individual gifts. Your donation is tax deduc tible to the extent allowed by law.

All rights to The Pulmonary Paper (ISSN 1047-9708) are reserved and contents are not to be reproduced without permission.

As we cannot assume responsibility, please contact your physician before changing your treat ment schedule.

The Pulmonary Paper StaffEditor . . . . Celeste Belyea, RN, RRT, AE-C, FAARC

Associate EditorDominic Coppolo, RRT, AE-C, FAARC

Design . . . . . . . . . . . . . . . . . . . . . Sabach Design

Medical Director . . . . . . . . . . Michael Bauer, MD

The Pulmonary Paper is a membership publica-tion. It is published six times a year for those with breathing problems and health profession-als. The editor encourages readers to submit information about programs, equipment, tips or services.

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