COPD and Other Stuff

This is a patient-to-patient blog to exchange information and resources...from COPD to Arthritis to Cellulites to Sarcoidosis to Sleep Apnea to RLS to Psoriasis to Support Groups to Caregivers and all points in between.
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Posts Tagged ‘disease’

Will the Kitsap County Health District Get Involved?

Friday, September 10th, 2010

A office Spirometer costs about $800. At least one Kitsap County resident has pledged to donate the machine to the KCHD – Will the Kitsap County Health District – Finally – Play Early Detection Spirometry?

WHEN will the Kitsap County Health District (KCHD) get concerned with early detection Spirometry testing for COPD (Chronic Obstructive Pulmonary Disease) the 4th leading cause of death in the country?

120,000 people die each year from COPD …many of them could have been stopped in its tracks by early detection.

Thanks to Steve Nelson we know Kitsap County has about 9,200 diagnosed COPDers. This slow developing disease takes about twenty years to develop symptoms enough to tell the doctor. The educated guess is that another 9,200 or more are undetected. A Spirometry test could save lives and millions in public funds to medically treat COPDers and other diseases that may develop after COPD opens the door.

The KCHD’s stated online Program Goal in part:

“Community Health Promotion carries out the Health District’s mission by developing and implementing culturally competent outreach and educational programs and policies to positively influence health behavior and health choices among Kitsap County residents.

* Community mobilization;
* Coalition development and collaboration with external
partners;
* Health education intervention planning, implementation, and evaluation;
* Utilization of social marketing strategies;
* Utilizing a strength-based (asset framework).

Community Health Promotion areas of focus include:

* Tobacco Prevention and Control;
* Injury Prevention;
* Kitsap Gets Active;
* Outreach to Hispanic Families;
* Adolescent Health Education;
* Breast and Cervical Health;…”

http://www.kitsapcountyhealth.com/community_health/health_promotion/hp_index.htm

Where is early detection Spirometry testing for COPD?

The KCHD is involved with Breast and Cervical Health when COPD kills more people per year than Breast and Lung Cancer combined.
COPD is ignored.

‘Tobacco Prevention and Control’ is listed. 80% of COPDers were smokers.

KCHD ignores COPD early detection.

Medscape says:

“… Several well-recognized criteria have been established for the use of medical tests that have been proposed for the early detection of disease, [30-34] and spirometry for the detection of COPD in adult cigarette smokers fulfills all of these criteria:

1. The disease, if not detected early, would go on to cause substantial morbidity or mortality;

2. Treatment is available that is more effective when used at the early stage before the development of symptoms than when used after the symptoms develop; and

3. A feasible testing and follow-up strategy is available that
a. minimizes the false-positive and false-negative rates,
b. is relatively simple and affordable,
c. uses a safe test, and
d. includes an action plan that minimizes potential adverse effects.

The above criteria are usually applied to screening tests, defined as medical tests done for individuals who have no symptoms or signs that suggest the possibility of disease.

Office spirometry is considered to be a part of a clinical evaluation and does not fall under the definition of a screening test when performed for patients with respiratory symptoms who are seen during a clinical encounter (whether or not they have a history of cigarette smoking). Also, if the patient has been diagnosed as having tobacco addiction (a disease with a code in the International Classification of Diseases, ninth revision), office spirometry may be indicated to assess the severity of that disease and is not then considered to be a screening test. Although the NLHEP does not recommend office spirometry for screening unselected populations or for testing patients who have no cardiopulmonary risk factors, the next section of this document provides evidence that office spirometry fulfills all of the criteria listed above when it is used to detect COPD in adult smokers.

The Disease, If Not Detected Early, Would Go On to Cause Substantial Morbidity or Mortality

Office Spirometry Is Relatively Simple and Affordable

Spirometry is a relatively simple, noninvasive test. Office spirometry takes only a few minutes of the patient’s and technician’s time and includes a few athletic-type breathing maneuvers of 6 s duration. The economic costs of a spirometry test include the cost of the instrument and the cost of personnel time (both training and testing). Diagnostic spirometers currently cost about $2,000, and about $10 of time per test is spent in testing (including training time) and disposable supplies. Office spirometers will cost , $800 and require even less testing time than diagnostic spirometers. Adding a post-bronchodilator spirometry test for asthma adds about 15 min to the test time (but is not needed for COPD evaluations).

COPD is the most important lung disease encountered and the fourth leading cause of death in the United States, and it affects at least 16 million people.[7,35] Of the top causes of mortality in the United States, only the death rate for COPD continues to rise, increasing by 22% in the past decade. The 10-year mortality rate for COPD after diagnosis is > 50%.[36] In addition, the number of patients with COPD has doubled in the last 25 years, with the prevalence of COPD now rising faster in women than in men.[37] Although the frequency of hospitalization for many illnesses is decreasing, the number of hospital discharges for COPD rose in the last decade. COPD causes 50 million days per year of bed disability and 14 million days per year of restricted activity.[38,39] COPD causes about 100,000 deaths per year, 550,000 hospitalizations per year, 16 million office visits per year, and $13 billion per year in medical costs, including home care.[35]

Treatment Is Available That Is More Effective When Used at the Early Stage of COPD, Before the Development of Symptoms, Than When Used After Symptoms Develop

COPD is a slowly progressive, chronic disease …”

http://www.medscape.com/viewarticle/405948_2

Part 1 More later…. Sharon O’Hara


Quest for Better Health: Whatever It Takes!

Friday, August 27th, 2010

Quest for Better Health: Whatever It Takes!

The Cystic Fibrosis Research, Inc.’s recent 23rd Annual Education Conference’s rallying cry for 2010 is the best I’ve seen anywhere, for any disease, for any life standard. It gives me the nerve to publically ask for help.

Quest for Better Health: Whatever It Takes!

Following are a few quotes from the warm welcome given the Cystic Fibrosis Research, Inc. participants by S. Joseph Simitian, State Senator, 11th District that can be applied to all medical conditions.

“…event is a valuable opportunity to bring people together to share the latest information … treatment, research, and services…. applaud the conference participants, volunteers and staff …for their efforts to provide education and support for individuals living with … raising awareness … and the need for continued research, you …make a difference.”

http://www.cfri.org/pdf/ConferenceBrochureFINAL,pdf.pdf

Quest for Better Health: Whatever It Takes!

Who will join me to work together for one common goal, lose obese weight for medical and health reasons through education and practice of proper nutrition and exercise?

Each of us would become active participants by taking turns to research different nutrition and exercise topics and become a speaker to our group. We will learn and teach each other…a fun and educational commitment.

I hope that we will have professionals assist from time to time…otherwise, we’re patients helping patients.

If we are a small group, we can meet in my ex living room turned exercise room. It contains a treadmill, elliptical, recumbent trike, bow flex, dumb bells and a few other items.

The price is your time to get healthy through research, nutrition and exercise. In addition, for me, it is the support a group of like minded people can supply to help me do what I must…drop this weight. I’d like to meet at least three times a week…but I’m flexible.

Quest for Better Health: Whatever It Takes!

For more information or to offer suggestions, call 360-337-1454 and ask for Sharon.

A friend has even offered $1,000. to the person who loses the most weight in seven months.

More later… Sharon O’Hara


A New Tess, No More Oxygen Tank and Hose in the Nose

Wednesday, March 3rd, 2010

Once upon a time, there was a woman called Tess who lives in Port Angeles. She wore a hose in her nose tethered to an oxygen tank that followed her wherever she went.

Without supplemental oxygen, Tess’s blood/oxygen saturation (normal is 100) dropped to 82 with mild exertion. Her FEV1 (standard gage

Tess, Fit and Living Life Without Oxygen

Fat and Sassy No More-.Healthy and Sassy Nowdays

for COPD) was 34.

Tess is an exuberant woman who knew the prognosis was not good.
Luckily, she learned of the University of Washington and UC San Francisco Schools of Medicine, Shortness of Breath Study, applied for the one-year study and was accepted.

COPDers are different and roughly, 10% of COPDers are Alpha. Alphas inherit the disease.
I am a plain COPDer, Tess is an Alpha and has already lost one brother and sister to the disease.

Immersed in the study, Tess began slowly and lasted five minutes on the treadmill. Gradually, with difficulty, she continued to increase her speed careful not to drop below the 90% saturation level.
Tess’ slow five minute beginning had jumped by the end of the first month, to 30 minutes at 2mph, and included increased speed and fast bursts of speed.

By the end of 6 months, Tess had lost 4 pounds and decided to join Weight Watchers to increase her weight loss. Exercise made her able to be more active but the weight loss needed more help. Time passed and Tess got stronger and dropped weight, including her cholesterol. The cholesterol dropped 50 points to a healthier 200 points.

By the end of the yearlong study, Tess lost over 40 pounds and walked a steady 3.5 mph on the treadmill. She nearly tripled her speed in the final study 6-minute walk from the first 6-minute walk.

Now we are coming to the part I do not understand…Tess does not need oxygen anymore, her sats stay above 95 and she had all the oxygen equipment picked up and out of her house.

Until now, I have thought once on oxygen, always on oxygen. Wrong.

Tess has lost 52 pounds to date and looks forward to her son’s wedding in two weeks without worry about running out of oxygen nor the hassle and worry of dragging a tank around.

The opportunity to join the University of Washington’s Shortness of Breath Study ends this month, March 2010.

I wholeheartedly recommend and urge COPDers to apply…your life will change for the better. More importantly, the combined results of the study will benefit COPDers who come after us – our children and grandchildren.

Who are the researchers?
“The study is under the direction of Dr. Ginger Carrieri-Kohlman, Professor in the School of Nursing at UC San Francisco and Dr. Huong Q. Nguyen, Assistant Professor in the School of Nursing at University of Washington, Seattle. Dr. Carrieri-Kohlman is an internationally known expert in the research and treatment of dyspnea. She has led the Dyspnea Research Group on studies of shortness of breath self-management in patients with lung disease for over 15 years. Dr. Nguyen’s research has been focused on developing and testing Internet-based education and support interventions for people with chronic illnesses.

Our collaborators include Drs. Steve Lazarus and Josh Benditt from UC San Francisco and U Washington Schools of Medicine, respectively. They are both well known for their excellent research and clinical practice with people who have chronic lung disease.

We have a stellar research team: UCSF: DorAnne Cuenco, RN PhD, Krista Sigurdson, BS; UW: Pam Weisman, RN, MS, Lynn Reinke, RN, MS, Sarah Han, RN, and Cheryl Beardsless, BS. “

https://www.managesob.org/RS/StudyII/

More later… Sharon O’Hara


Thanksgiving 2009 and Hope

Friday, November 27th, 2009

It is Thanksgiving and I write here, off topic, in heartfelt gratitude.

Plants and people, life and death, disease and health…seem interrelated.

I once had a bamboo flower and lose all its leaves. Even knowing it had to be dead, I could not compost it. I moved the pot and the bare, dead looking sticks to another spot in the yard. I kept an eye on it and occasionally watered it. Years later, it is thriving in- ground along the driveway.

Patience and never giving up works for plants, people too. Not always.

Other bamboo and different plants I cared about have appeared dead and, left alone, came back. Not all.

The splendid Magnolia grandiflora my parents gave me to plant in memory of Norman, my little brother… came back to life after three years of looking dead in the PT garden where it was transplanted.

The gardener, who helped mom in her yard, dug the tree up from their yard, bundled the roots and drove the distance to transplant it into my newly designated, Norm’s Memory Garden.

I had the pick-ax ready as he dug the planting hole and soon heard the ring of his shovel hitting the native hard clay and rock…about 18” down.

I handed David the pick and asked him to loosen the hardpan soil to mix with the enriched topsoil of the garden bed and the rich soil around the tree’s large roots from the fertile ground of its old home.

He reluctantly did as I asked. As a brand new master gardener from the Kitsap County Master Gardener course, I learned of a new world of soils, plants, environment and came to understand, love and appreciate bugs and their vital work in our world.

Time after time David swung the ax over his head into the hard ground. Finally, he had the depth and width suitable for the large roots to reach out into its new home and I was satisfied.

David mixed the soils with the native soil and carefully moved the tree into place. He filled the hole and watered the soil in.

Norm’s memory tree was now at home in the middle of the south bed closest to the house. It was beautiful and I envisioned it would one-day tower over and shade the upper deck.

Norm’s Magnolia grandiflora tree became a focal point as I worked around the property or glanced out a window.

I watched as the beautiful magnolia began to fail, the huge leathery green leaves gradually withered and fell. Norm’s tree began to look dead.

Taking the WSU Master Gardener course, I knew the big trees were not easy transplants but still, I left it alone and waited.

Day after day, month after month, then year after year I watched and waited.

Three years after the transplant, Norm’s memory tree began to form fresh new leaves. The healthy, shiny, thick, huge leaves gained in strength and abundance another year or two until she was splendid in her beauty and began to grow.

Fast forward to now…

The little bulbs were outside in a small pot. Brought inside, the soil dried into dust around and through the girded dry roots. The bulbs dried until the little mass was feather light. I lifted the little bundle into a small white dish to keep until…

Yesterday, I saw the green of new growth and inspired by it, wrote this letter to my son and his beautiful, spiritual new wife.

Life Peeks from Dust

Life Peeks from Dust

Dear Son and Bride….
New buds spring from the dead and troubled stocks of yesterday.
Sprouting from unnourished, dry and withered bulbs, the tiny sprouts grow strong as they form from the old as if to say.
HERE I AM, YOU LUCKY PEOPLE!
Today is a renewed spirit, fresh and ready to write in the smooth sand of a new beginning.
Light, joy and laughter does not come easy, but it comes steadily just as sand flows endlessly through the bottomless hourglass of God’s light. Along the way, the flowing sand moves over the rough bumps until they are nothing.

Light, joy, love and laughter… a new dawn, a new day, a new begin.
God works in mysterious ways and darned if I can figure it out but I do not have to…. I am just grateful He does not give up.

Bless you…
Love… Mom Sharon – Thanksgiving, 26 November 2009
(My son lovingly cared for his grandmother at home, with hospice, until she passed)

More later… Sharon O’Hara


COPD Patient International BILL OF RIGHTS

Thursday, August 27th, 2009

The First World Conference of COPD Patients held in Rome, June 2009 had more than 250 people from more than 40 countries in the world. Gathered together, the First World COPD Patient Bill came into being.

How does the health authority in our country, the United States of America, stack up against other countries in the COPD fight for patient rights?
How does our local authority stack up?
^^^^^^^^^^^^^^^
COPD PATIENTS’ GLOBAL BILL OF RIGHTS
“COPD is a disease that working people acquire as a part of their
life in society. Like arthritis where years of strain and lifting
on the joints wears them down, COPD is caused by years of
breathing toxic materials, especially tobacco and biomass fuel
smoke, and other pollution that damages the lungs.
People with COPD worldwide have earned their right to
medical care by their lives of work. These rights include
all those listed below.”

The COPD Patients’ Global Bill of Rights was adopted
by the First World Conference of COPD Patients,
……
1. The right to receive early and accurate diagnosis

Early and accurate diagnosis is essential for COPD patients to take
the necessary steps to improve their quality of life and lung health.
Physicians and national health services have a responsibility
to provide this early and accurate diagnosis. National health
services should have reliable information about the number of
COPD patients in their country. Physicians should be willing and
able to diagnose COPD.

2. The right for information and education about COPD

People in each country should know what COPD is, its risk
factors, especially smoking, and what symptoms it causes. COPD
patients should be taught what state-of-the-art care for COPD
involves.

3. The right for support and understanding

Friends, family, communities, health care providers, and health
services need to provide support and understanding to COPD
patients for this difficult disease.

4. The right to receive care and treatment that will benefit them

Proper care and treatment will benefit patients, improve their
breathing and quality of life, and will help them contribute more
to others. Effective medicines, smoking cessation counseling
and treatment, and good health care are essential to provide this
right, as is long-term follow up.

COPD PATIENTS’
5. The right to their fair share of society’s involvement and
investment in their welfare and care

COPD patients have worked throughout their lives to earn their
fair share of society’s involvement and investment in their welfare.

6. The right to advocate with other COPD patients and
supporters for improved COPD care and COPD prevention

COPD patients know how important good care is to their lives.
They also know that every effort should be made to prevent
others from suffering from this disease. It is their right and
responsibility to advocate at every level for improved COPD care
and prevention.

7. The right to safe air and environment

Unsafe air and environment are particularly harmful to COPD
patients. All health care professionals have an obligation to
protect their patients from conditions that are unsafe to their
health. Patients and health care providers have an obligation to
fight for their rights to safe air and environment.
GLOBAL BILL OF RIGHTS

The COPD Patients’ Global Bill of Rights was developed
by the International Copd Coalition (ICC)
www.internationalcopd.org
TM
INTERNATIONAL
Helping the World Breathe Free

More later… Sharon O’Hara


The Babies Have Cause to say, ‘Thanks!’

Monday, June 15th, 2009

The long awaited FIRST INTERNATIONAL COPD/Patient CONFERENCE in Rome, Italy is over, but the results and benefits of the conference are bound to reach generations yet to be born.

Hosted by the Italian Ministry of Health, more than 100 delegates from around the world – the Who’s Who folks of the medical lung world and leading patient advocates were there in force to join the fourth GARD (Global Alliance against Chronic Respiratory Diseases) annual General Meeting. Disease never stops at borders and for those who wonder, GARD officially began in Beijing, the Peoples Republic of China, March 2006.

“…a world where all PEOPLE can breathe FREELY.”

In part, last week-end’s meeting was an attempt to fit the GARD Action Plan for 2008 – 2013 into the same timeframe of the World Health Organization’s (WHO) plan to prevent and control noncommunicable diseases worldwide.

“Leading respiratory expert, Jean Bousquet, Professor of Pulmonary Medicine at the University of Montpellier and Chairman of WHO GARD: “The burden of allergy, asthma and chronic obstructive pulmonary disease (COPD) in Europe and the rest of world is such that the cost of inaction is unacceptable and the WHO has recognized the enormous human suffering from chronic respiratory diseases, and are therefore making CRD one of its priorities between 2008-13.”

On a local note, no agency I know about, not Harrison Medical Center, nor our Kitsap County Health Department offers early detection Spirometry tests to the public. For a disease taking about twenty years to develop symptoms enough to take to the doctor, not to offer the test is unacceptable.

Left unchecked, by the slow twenty-year mark, most folks have already lost about fifty percent of their lungs. The cost of health care for respiratory patients is enormous over time and much, if not most such costs might be avoided with early detection.

The results of the fast Spirometry test will show if full Pulmonary Function Testing is needed.

I enjoy the TV COPD ads, but they give a false picture – no COPDer I know is out dancing, though early detection would allow such a thing.

Patients must take charge of their own health – speak up, ask the doctor about a Spirometry test if you have the slightest breathing concern.

A tip for smokers: Smoking indoor, in a confined area, forces your lungs to continue to inhale the toxins you just inhaled. Smoke if you must, but be smart about it.

If your spouse smokes inside, either move or divorce the spouse. He/she is helping destroy your lungs and life as well as their own.

More later…

Global Alliance against Chronic Respiratory Diseases (GARD)
Department of Chronic Diseases and Health Promotion
World Health Organization
20, Avenue Appia
CH-1211 Geneva 27
Switzerland
Tel: +41 22 791 3960/2578
Fax: +41 22 791 4769
email: gard@who.int


Leg Veins Not Vain

Saturday, April 25th, 2009

Getting your lower leg veins checked is not vain and getting them checked free is a winner all the way around.
Lower leg ulcers are a condition when the skin opens in sores and yellow pus drains down the leg. It causes the worst pain I have encountered and in my case, it is chronic.
Swollen lower legs seem a common uneventful condition – do not ignore it as I did. Get your legs checked. If your doctor tells you to lay off salt and elevate your legs above your heart – do it. The future pain avoided is yours.
Pain pills are not an easy solution for a COPDer – they depress the respiratory system – the last thing we need.
Early detection and education is a key to healthy pain free legs
Today and the 4rth Saturday of every month the Kitsap Thoracic & Vascular clinic offers a FREE venous screening according to the Kitsap Sun’s latest jewel, “Better Healthy Living” magazine.
John S. Arthur M.D. F.A.C.S. is located on Wheaton Way #101, Bremerton. Dial 360-479-2400 or e-mail KTV101@msn.com for more information.
Harrison Medical Center touts two linear accelerators to fight cancer. It is a precision tool, image-guided radiation therapy…a tool developed through cancer research.
Someday COPD will have a research break-through. Someday.
In the meantime, a cheer for medical research and researchers for disease … research cuts through the ignorance barriers of disease.


COPD is Scream Worthy according to a Kitsap Sun Blogger.

Thursday, April 23rd, 2009

COPD and Other Stuff …
…came about for several reasons…because people do not seem to know much about COPD, this disease seems to attract friends in the form of other diseases for the COPDer and the Kitsap Sun is willing to allow this shared adventure.
COPD is not a death sentence but it sure is a wake-up call.
I have a theory that the more informed we become about our condition and the more active we are in our own care, the better off we are. Our doctors are trained in medicine and indispensable but the responsibility for our life is ours.
There are a million things I want to say but for this first post, I am using a copy of a letter in part, I sent to my daughter when she told me that good friends had serious Emphysema hit their family.
“I’m sorry, but if they get on the right track from the beginning,(friend)may not go on to develop other ‘Stuff’.’

For starters:

Has (friend’s husband) Pulmonologist described the healing his lungs will do – the improving – for the first six months to a year after he stops smoking?

My doctor drew a graph showing the approximate lung improvement over months until the lungs have dispelled the last of the sticky smoke residue and healed until they are as good as they are going to get. His lungs will then continue normal aging.

The wonder though is that he, with full knowledge of his damaged lungs, will not be further destroying his lungs by continuing to smoke…like kicking a sick horse and adding insult to injury.

Today the idea of actually inhaling the foul smoke into my laboring lungs is noxious.

Another aid to stop smoking is for (friend) to visualize his impaired lungs and imagine inhaling the smoke into a distressed airway and down through his sick lungs. Yick!

Also, tell him to keep fighting to be the best he can be. THAT fight includes EXERCISE for a quality life. Tell (friend) not to give up and accept a role as an invalid…NEVER! (Some of the most invalid people I know have not got a thing medically wrong with them)

Tell (friend) (state) has a good teaching hospital she might want to run (husband) through for a second opinion.
(His) Primary Doctor is the key…the hub of the health wheel.

(State) also has the BEST Pulmonary Rehab Center in the whole country – right there.

That is enough for starters.

Life is not over for (husband and new caregiver, his wife)…far from it.
They are on an adventure of their lives and do not kid yourself.
Any disease that affects one member of a family affects ALL members of that family.”

Together, here, I hope we can help each other and others share hard-earned information about COPD and Other Stuff.
My comments are mine as a patient and in no way reflect medical advice. For medical advice, talk to your doctor.
Together I hope we can communicate and narrow the distance between the physician, patient and caregiver.
As Yvonne says, “We are in this together.”
Sharon Blomlie O’Hara


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About This Blog

This is a patient to patient blog to exchange information and resources...from COPD (Chronic Obstructive Pulmonary Disease) to Arthritis to Cellulites to Sarcoidosis to Sleep Apnea to RLS to Psoriasis to Support Groups to Caregivers and all points in between. Written by Sharon O'Hara.

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