COPD and Other Stuff

For those on the “should I, should I not get a sleep study?” fence, please read the following.

According to the Center for Sleep and Respiratory Neurobiology, University of Pennsylvania School of Medicine, Philadelphia, PA a connection may exist between sleep apnea and heart disease.

Although not conclusive and lengthy studies to determine if sleep apnea and cardiovascular disease are connected are a long way off, it is suspected that sleep apnea is a risk for heart disease.

I am next to the last person in the world to presume telling anyone else what to do but do offer information to investigate for yourself.

That said, I have practical experience with sleep apnea. The sleep study I had years ago led to me wearing a bipap and now, a recently added concentrator is connected to my bipap machine.

I’ve known about the right heart failure because we’ve been ‘watching’ it for some years. I did not worry about it though because I figured the other side of my heart must still be healthy. Remember, I am a patient, not a medical professional.

A week ago, I was told I have ‘congestive heart failure” …quite another thing. That involves the whole heart. I looked it up.

The point of this little tale is to say I have sleep apnea and developed a heart condition suggesting to me there may well be a connection.

{ It is proposed that given that CPAP treatment for obstructive sleep apnea is highly effective and essentially totally safe, and that the evidence is suggestive that sleep apnea is a risk factor for cardiovascular disease, then we propose all patients with severe sleep apnea should be treated to reduce cardiovascular risk….}

Best wishes fence sitters … jump into health if you can.

http://www.ncbi.nlm.nih.gov/pubmed/19249449?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA&linkpos=2&log$=relatedreviews&logdbfrom=pubmed

More later…. Sharon O’Hara

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Psoriasis is painful and can be disfiguring…even to a pair of slippers.
I had to cut off the tops of my slippers and parts of the sides and front to alleviate pressure on my feet and toes but this post is about hope and education and to announce the Psoriasis Society’s upcoming Educational Event in Seattle. Don’t miss it.

Saturday, March 13, 2010
Seattle, Washington
Hotel Nexus
Room: Cascade Ballroom
2140 N. Northgate Way
Seattle, WA 98133

[Psoriasis is more than skin deep. A genetic disease of the immune system, psoriasis can be associated with other health conditions. Results from recent studies are changing the way we understand psoriasis and bringing new insights to treatment.

Psoriasis: More Than Skin Deep is an educational presentation that will address these issues and provide tools to access the treatment you need.]

Parking: Free hotel parking

Speaker
Bernard Goffe, MD

Schedule and registration information

9-9:30 a.m.—Complimentary breakfast and registration
9:30-11 a.m.—Psoriasis: More Than Skin Deep program
11-11:30 a.m.—Additional information and networking
11:30 a.m.-1 p.m.—Open invitation to attend an informal group presentation about our second annual Walk to Cure Psoriasis in Seattle. Learn why we are raising funds to support research efforts to find a cure and how you can get involved.

Complimentary lunch provided.
For more information, please contact walk@psoriasis.org.
________________________________________
If you would like more information about an event, please email events@psoriasis.org or call 800.723.9166, ext 402.

If anyone needs a ride or wants to carpool, let me know.
This free event is a wonderful opportunity to learn about the latest research and newest treatments.

More later… Sharon O’Hara

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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

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

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Too many of our returning soldiers have it – the Agent Orange of 2010 – lung disease leading to the good, the bad and the ugly.

The only thing “good” about the following is that it is bringing public attention to an invisible disease and the 4th leading cause of death in the nation, killing 120,000 people a year. COPD is expected to be the 3rd leading cause of death by 2020.

The “bad” is our soldiers were hit by the invisible permanent lung damage of constrictive bronchiolitis.

“…In 2008, Miller and pulmonary/critical care fellow, Matthew King, M.D., pulled together the first round of what they believe is solid evidence that soldiers are returning with serious and permanent lung injuries related to their service….”

“…The soldiers also shared similar stories of exposure in Iraq to massive amounts of smoke from sulfur fires in 2003, or breathing air fouled by sand and smoke from burn pits all over the country. Miller made a… “unconventional” move and recommended surgical biopsies.

“So far, all but a few of these soldiers we have biopsied have had constrictive bronchiolitis,” Miller said…”

The ‘ugly’ is that our soldiers and nation are faced with 2010’s version of ‘Agent Orange.

“… typical example of what may be an emerging profile: a soldier who was fit, a lifelong non-smoker, and who returned from deployment in Iraq with permanent lung damage.

Since 2004, physicians serving the Fort Campbell Army base have been referring dozens of soldiers with exercise-induced shortness of breath to Vanderbilt, to see Robert Miller, M.D., associate professor of Allergy, Pulmonary and Critical Care Medicine. “

“The soldiers also shared similar stories of exposure in Iraq to massive amounts of smoke from sulfur fires in 2003, or breathing air fouled by sand and smoke from burn pits all over the country.

Miller began to wonder if conventional testing might not be enough. He made what he calls an “unconventional” move and recommended surgical biopsies.

“So far, all but a few of these soldiers we have biopsied have had constrictive bronchiolitis,” Miller said.

Constrictive bronchiolitis, also called Bronchiolitis Obliterans, is a narrowing of the tiniest and deepest airways of the lungs.

It is rare, and can only be diagnosed through biopsy. Cases that have been documented in the medical literature show striking similarities to what is seen in the soldier’s biopsies.

“These are inhalation injuries, suffered in the line of duty,” said Miller.

In 2008, Miller and pulmonary/critical care fellow, Matthew King, M.D., pulled together the first round of what they believe is solid evidence that soldiers are returning with serious and permanent lung injuries related to their service.

Most of the first patients biopsied were 101st Airborne soldiers who fought the Mishraq Sulfur Mine fires in 2003. Later, many soldiers reported exposure to burn pits, especially a massive, 10-acre burn pit in Balad, Iraq….”

Deployment in Mosul renders a former marathon runner and mom of 7-year-old daughters “unable to pass her military physical fitness testing.”

“The former marathon runner and mother of 7-year-old twin daughters returned from deployment in Mosul in 2007 unable to pass her military physical fitness testing. Even her colleagues at the Army hospital couldn’t help her pinpoint what was wrong.

When Waters heard about Miller’s work she came to Vanderbilt in 2008. Her biopsy confirmed constrictive bronchiolitis.

“As a medical officer, I am considered fit for duty because I can still work in the O.R., even if it is only one day per week,” Waters said. “But my future is uncertain. Once I leave the service it could be very difficult to get medical coverage because of my preexisting medical condition.”

Miller says he is concerned soldiers continue to be tested for shortness of breath across the country using only conventional methods.

He says surgical biopsy and definitive diagnosis are required just to create the possibility of proper compensation, but even then, there is no guarantee.
“Even with positive biopsy, disability ratings have been highly variable,” Miller said.”

http://www.mc.vanderbilt.edu/reporter/index.html?ID=8270

Thanks to the bright, thinking and unconventional medical folks approach at Vanderbilt and elsewhere, Chronic Obstructive Pulmonary Disease (COPD) is beginning to see the light of day.

More later… Sharon O’Hara

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Even the non NASCAR fans have to applaud NASCAR’S generous support of one of the most under rated, unknown 4th leading killer in the nation and 5th in the world, COPD (Chronic Obstructive Pulmonary Disease)

Some lucky NASCAR fans will win an ultimate NASCAR holiday and for a good cause: Race4COPD. The Race4COPD begins tomorrow at Daytona right after Linda Loveless sings the song she wrote in memory of her sister, DRIVE, for this important and first of its kind Race4COPD to find the millions of people who don’t know they have COPD, many who have never heard of it.

Race4COPD begins with NASCAR racing star Danica Patrick, joined by the stars and greats in their own field, Jim Belushi, Bruce Jenner, Patty Loveless and Michael Strahan. Each of the all star driving team has been touched by COPD and Linda Loveless lost her sister at a young age.

“”I remember how my grandma struggled to breathe and how it limited her life,” said Patrick, whose grandmother suffered from emphysema, one of the two forms of COPD. “That’s why our goal is to get at least 1 million people to take a five-question screener to find out if they may be at risk for COPD and talk to their doctor. Because the sooner you act, the sooner you can get on the road to breathing better.”

“This is an important cause for NASCAR and we’re committed to helping our fans and millions of Americans who have COPD by increasing public understanding of the disease,” said Steve Phelps, senior vice president and chief marketing officer, NASCAR. “We are thrilled that this campaign has become the official health initiative of NASCAR, making its first ‘Pit Stop’ during the popular Daytona weekend and coming to many other races this season.”

The team will drive four days and 6,000 miles to ask people five questions to see if they are at risk…see DRIVE4COPD.COM

“COPD can be managed to help people live and breathe easier. Early diagnosis of COPD is critical, as lung damage is not reversible but is treatable. Proper management of COPD is important to help patients breathe better, remain independent, prevent complications and exacerbations, and improve quality of life. Lifestyle changes like staying active and quitting smoking can help improve symptoms. Yet even when people are diagnosed with COPD, only half of them are prescribed treatment to help them breathe better.”
www.lungusa.org. www.copdfoundation.org. http://us.boehringer-ingelheim.com

Close to home surprising is the fact our own Harrison Medical Center has employees who do not know what COPD is – two recently asked me. (Please note my comment does not reflect on Harrison’s outstanding medical staff and stellar patient care)

It’s about time! More later… Sharon O’Hara

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Medical patients, bicycles, bicycle paths, exercise – all share a common thread…like a slow deep breath of sweet, life-sustaining air. Quality of Life makes life worth living.
Quality of life means different things to different people, a loved bed ridden patient and a physically active patient can and do share a quality of life.

The grandmother of my best friend in grade school was bedridden and lived with the family I spent much of my non-school time with. Mrs. O was a complete and treasured member of the family. The oxygen tanks were set up in her room and she entertained visitors – us, many times throughout the day as we ran in to tell her about the latest horse fall or dog and piglet tale. She always had time for us. Sometimes the doctor was there and we could not visit, but most of the time, she was our person to visit throughout the day and evening.
Mrs. O was always busy with her hands mostly working on the latest crocheted doily. She was a cherished and vital member of that family and I still have a doily she gave me all those years ago. To be fair and complete the picture, Mrs. O’s daughter-in-law was a stay at home mom and they also had other assistance many families do not have today.

Mrs. O was unable to get out of bed in those days, but she would have rejoiced with the folks who live in Portland that Portland’s bike plan was approved when the “Portland City Council unanimously approved the $600 million 2030 Portland Bicycle Plan yesterday. A major goal of the plan is to have 25% of all trips in the city be by bike by the year 2030. A highlight of the plan includes adding 700 miles to Portland’s already extensive bikeways network.”
The point is people flock to areas that cater to our human need to move, to exercise for quality of life – outside a gym.

We spend millions of dollars on hospitalizations and medical care that might well be avoided if we placed more emphasis on keeping patients moving and educated, not shoving them into wheelchairs and scooters, but getting them into rehab and teaching them how they can best help themselves into a quality of life.

My favorite way of transportation and exercising for fun is the recumbent trike. Unfortunately, Kitsap County is notorious for its dangerous roadways for bike riders and does not have a very bike user-friendly reputation.
Bainbridge Island is the one Kitsap County exception where the voters are health conscious and knowledgeable enough to know that the dollars they put into bike paths (and schools) today will save them an untold amount of otherwise spent health cost dollars tomorrow.

I am working hard in physical therapy to work around my bone on bone hip and rebuild muscle to get me back on my trike and riding. I have a bike trip to make this year and I hope the route I am taking is a bike friendly one.

Congratulations to Portland’s health conscious voters and city council – may your wisdom rub off on us here in Kitsap County.

http://www.ecovelo.info/2010/02/12/portland-bike-plan-approved/

More later… Sharon O’Hara

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Dr. Col V P Gopinathan, for the Pulmonology Club, Trichur, India, announced they formed a new club on 16 January 2010.
Forty-four patients joined the doctor supported, patient support and educational group.
Included in the program were a demonstration of pulmonary devices and a discussion of the airway diseases shown in the available brochures handed out to the members.

The newly formed Pulmonary Club proposes to hold meetings bimonthly on the first Sunday and to increase membership. India’s medical students are actively involved and office bearers include patients.
India’s Pulmonary Physicians have a good start in their quest to control the growing airway menace, including Chronic Obstructive Pulmonary Disease (COPD) menace.

As a lung patient (COPD and Sarcoidosis) living in the Pulmonary Desert of No Physician Patient COPD Club in Kitsap County, Washington, sincere congratulations to Dr. Col C P Gopinathan and Associates for their newly formed Pulmonology Club, Trichur, India.

More later… Sharon O’Hara

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If we are in a boxing match, Fat in one corner, and Lungs in another, Fat wins every time.
Why?
Fat takes up the chest room Lungs need to expand and for lung patients, fat compromises our ability to breathe.

The fat v lungs slammed home to me a couple weeks ago when a granddaughter, taking a new class on her way to becoming an RN, told me she just learned that each pound of excess fat is fed by SEVEN MILES of blood vessels.

I went online that night and found an airport-scanned photo (Digg) of a 250-pound woman next to a 120-pound woman. Fat filled her stomach and chest crowding her lungs and heart. Heaven knows what all that fat is doing as it surrounds and crowds the kidneys, bladder and other organs….it cannot be good!

Look, fellow Tubby’ettes and join me. To date, I have lost 133 miles of excess blood vessels supporting nineteen pounds of excess fat.
Regular Tubby’ettes is lucky if their health is not yet compromised.

Lung patients, easing the fat surrounding our lungs will not change the PFT numbers, but we are bound to feel a sigh of relief from our lungs as the fat around them retreats and they can finally expand to capacity and add to our quality of life.

********************
Obesity and the lung: 5 • Obesity and COPD
Thorax 20 08;63:1110-1117 doi:10.1136/thx.2007.086827
Abstract
Chronic obstructive pulmonary disease (COPD) and obesity are common and disabling chronic health conditions with increasing prevalence worldwide. A relationship between COPD and obesity is increasingly recognized, although the nature of this association remains unknown. This review focuses on the epidemiology of obesity in COPD and the impact of excessive fat mass on lung function, exercise capacity and prognosis. The evidence for altered adipose tissue functions in obesity—including reduced lipid storage capacity, altered expression and secretion of inflammatory factors, adipose tissue hypoxia and macrophage infiltration in adipose tissue—is also reviewed. The interrelationship between these factors and their contribution to the development of insulin resistance in obesity is considered. It is proposed that, in patients with COPD, reduced oxidative capacity and systemic hypoxia may amplify these disturbances, not only in obese patients but also in subjects with hidden loss of fat-free mass. The potential interaction between abnormal adipose tissue function, systemic inflammation and COPD may provide more insight into the pathogenesis and reversibility of systemic pathology in this disease.”
• Review series
1. F M E Franssen1,
2. D E O’Donnell2,
3. G H Goossens3,
4. E E Blaak3,
5. A M W J Schols1
1. 1
Department of Respiratory Medicine, University Hospital Maastricht, Maastricht, The Netherlands
2. 2
Division of Respiratory and Critical Care Medicine, Department of Medicine, Queens University, Kingston, Ontario, Canada
3. 3
Department of Human Biology, Nutrition and Toxicology Research Institute (NUTRIM), Maastricht University, Maastricht, The Netherlands
1. Dr A M W J Schols, NUTRIM School for Nutrition, Toxicology and Metabolism, Department of Respiratory Medicine, University Hospital Maastricht, P O Box 5800, 6202 AZ Maastricht, The Netherlands; a.schols{at}pul.unimaas.nl
• Received 15 February 2008
• Accepted 30 April 2008
• **************************
• http://digg.com/health/Body_Scans_of_a_250_lbs_Woman_vs_120_lbs_Woman
More later… Sharon O’Hara

Fat Airport Scan

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Your Views on Participating in an Internet-based Study of
Physical Activity Patterns and Risk of Chest Infections

Greetings,

Our research group at the University of Washington is interested in studying how different patterns of physical activity put patients with COPD at risk of chest infections. In order answer this question, we need to study several hundred patients with COPD over an extended period of time. The most efficient way of doing this is to use the Internet and not require research participants come to a clinical center.

We are asking for your feedback on the feasibility of doing such a study and greatly appreciate your honest input. This 10-minute survey is completely anonymous. We cannot link responses back to you. The results will be reported in aggregate form and will not identify you individually. Participation in this survey is voluntary and you are free to skip any questions. Completion of this survey will imply your consent to participate.

Survey Link: https://catalysttools.washington.edu/webq/survey/hqn/81043

If you have any questions or comments about this study, we would be happy to talk with you. Please contact either Dr. Huong Nguyen (HQN@u.washington.edu; 206-543-8651) or Dr. Vincent Fan (vfan@u.washington.edu; 206-764-2292). Please remember that we cannot guarantee the confidentiality of email communication.

For additional rights about giving consent or your rights as a participant in this study, please feel free to contact the University of Washington Institutional Review Board Office at hsdinfo@u.washington.edu or via phone at (206) 543-0098 or via fax (206) 543-9218.

Our sincere appreciation for your time in completing this survey,

Huong Nguyen, PhD, RN
Assistant Professor
University of Washington

Vincent Fan, MD, MPH
Assistant Professor
University of Washington

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Prescription Mistakes Happen – Patients Be Aware

I have never doubted that any prescription I have filled is the right one. Until now.
On Thursday, I learned to doubt. I discovered a medication I had been taking for a couple weeks was not the medication I should have been taking. The right one was the second prescription filled. The reason I know that is that the new pills did not look the same.

Patients and caregivers be aware and double check that the prescription you get is the right one. We cannot assume our newly filled prescription is the right one.
Ask your doctor and pharmacist how best to double-check. No one wants patients getting the wrong medication, least of all us. Patients – be aware. Mistakes with prescription medications can happen. The mistake can be deadly or worse. Check and double-check that the medication filled is the right one.
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Patients must learn to question and double-check that the prescription and treatment is the proper one.
Mistakes happen but being aware might make the difference. In future, I will open the new refills immediately to be sure they are the ones I have been taking. I could have looked closer at the label… the drug names were close – one had an “o” and the other had an “a” …
I have been taking a high blood pressure drug for several weeks as a test to see if it worked and that I had no reaction from it. The blood pressure was down on my next doctor visit and had not noted any adverse reaction to it either and was given a I had the new script filled and continued to use what I had left.

Sometime last week, the skin on my upper right side became tender and sore. I developed a rash on my upper right arm and broke out in what appeared to be dark, fluid filled bug bites in the middle of bright red patches. The right side of my neck was and is stiff and sore. The rashes and pain spread we drove to the ER.
The new thing is Shingles and I was prescribed medications based on the list of medications I already take and gave the list to the doctor.

A prescription error happened but I did not discover it until last Thursday when I opened the new bottle of blood pressure medication and saw it was not the same drug.

The dilemma: the ER doc had prescribed two medications based on other medications, including the new one for high blood pressure. I would not begin taking an unknown drug not knowing the consequences.
I called the pharmacy. The pharmacist checked and said the drug I ‘should’ have been taking was the second one. He asked if I had any of the other pills left, no, but I did have the empty prescription bottle and yes, I took both to the pharmacy the next day.
The point here is not to moan about a mistake. The point is to bring awareness to patients that we must not assume anything.

What happened could have happened in any pharmacy …mistakes happen. I am sure the pharmacy has already set in new check guards so it does not happen again.

An error was made and joined an amazing set of circumstances and medical conditions that began with COPD (Chronic Obstructive Pulmonary Disease) way back about 1995.

Folks…make sure the medication prescribed is the same one you get.
More later… Sharon O’Hara

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