COPD and Other Stuff

Until now, I thought the GOLD Standard was the only COPD Standard available…not so.  The American Thoracic Society/European Respiratory Society differs from the GOLD Standard by 11% according to researchers at the Brooklyn Hospital Center in New York.

Read on for the conflict which may explain the remarkable feats of some older folks diagnosed with COPD (Chronic Obstructive Pulmonary Disease)

***

“Conflicting Standards May Lead to Overdiagnosis or Underdiagnosis of COPD

(#1118428, Sunday, October 23, 4:45 PM Eastern)

Researchers from The Brooklyn Hospital Center in New York documented the diagnosis, stratification, and treatment discordance between the most widely accepted Global Initiative for Chronic Obstructive Lung Disease (GOLD) standards and the American Thoracic Society/European Respiratory Society (ATS/ERS) standards for COPD. After reviewing the pulmonary function reports of 217 patients with the clinical diagnosis of COPD, researchers found the rate of discordance was 11%, while four patients with a median age of 41 years met the ATS standards but not the GOLD standards. The conflicting diagnostic criteria, severity classification, and treatment recommendations create a dilemma in patient care, especially in patients with borderline diagnostic criteria and overlapping classifications of severity. Without this consensus, older patients may be overdiagnosed with COPD and younger patients underdiagnosed with COPD.”

http://www.eurekalert.org/pub_releases/2011-10/acoc-c2e_3101411.php

Thanks for reading… Sharon O’Hara

I was recently in the hospital to get a head start on trying to control the leaky cellulitis/lymphedema/edema causing havoc and pain on my left leg and life.  For an entire day all my experiences in the hospital were incredibly good… until…

The new aide came closer to take vitals until she was close enough to smell cigarette smoke on her.  “Smoker”?  I asked – she said, “Yes” and continued to wrap the blood pressure cuff around my left arm and placed the thermometer into my mouth.

For whatever reason when she finished with the blood pressure, she held on to the handle of the thermometer and I smelled the smoke on her fingers held next to my nose.  My mouth was tight around the thermometer and now could not breathe without smelling her smoke and I pulled away and said, “Your fingers reek of cigarette smoke.”

She agreed and I suggested she wash her hands.  She said she did but the smoke smell did not come off.  I was trapped – a hospital patient forced to inhale cigarette smoke from a hospital worker.  She said she would get someone else to do my vitals.

Funny thing.  I was in that hospital because of a forty-year smoking habit and developed emphysema (COPD) due – probably – to smoking.

I stopped smoking in 1997 – a tough time that took me over two years to get over the gut wrenching addiction urge to smoke again…and here I was trapped in the hospital, forced to inhale smoke from a hospital employee reeking of cigarette smoke.  The irony of all their outside hospital signs proving they were a “Smoke-free” hospital and grounds was laughable.

I complained.  The hospital person I complained to told me they would get someone else to do my vitals…that I did not have to have a smoker helping me.  I asked about the other seniors – any patient – who would probably not complain of being forced to inhale the toxins of cigarette smoke from a hospital employee for fear of retaliation…no one seemed concerned about them.  Apparently, the issue is only an issue with me, an ex-smoker, as far as the hospital is concerned.

A few hours later, the RN came in with the vials of antibiotics and other meds that went directly into my veins.  He dropped one vial, hesitated, picked it up, hooked it into the devise going directly into my vein, and plunged the contents inside.  Neither of us said a word.  I remember thinking, isn’t this hospital floor dirty?  And hoped the contents of the vial stayed uncontaminated.

As an almost thirty year hairdresser, if I dropped a comb on the floor it was cleaned and re-sterilized before touching a patron.  Apparently, hospitals are different.

A while later it was time to hook up the oxygen tube to my bipap.  I pulled to get it for her but the end was stuck between the hospital bed wheel and the metal bedframe I’d just lowered.  I left to visit the bathroom and when I came back, the hospital employee had ‘fixed’ it.

I looked and she had placed the deformed tube end on my machine but had not pushed it on to secure it.  I did it and went to bed…wondering why an employee was allowed to reek of cigarette smoke and work around patients….wondered why an RN didn’t throw the vial away and get a new one for the patient when it dropped to the dirty floor…wondered why the tube end of the oxygen tube wasn’t replaced by a clean, sterile one when it had been lodged against the dirty hospital bed wheel.

To be clear…I do not care if the hospital person smokes.  I care when her/his right to smoke interferes with my right to breathe clean air – especially in a hospital.

I was discharged and came home the next day.

Am I overreacting and expecting too much from a hospital?

Thanks for reading… Sharon O’Hara

COPD – Chronic Obstructive Pulmonary Disease for many people is only the beginning of a series of medical conditions.  For me the latest is Cellulitis/Lymphedema – nasty painful stuff…you do not want.  Apparently, COPD trips the immune system for some of us leaving us open to whatever comes down the pike.  Lessons to be learned – do not let COPD develop.

Find a doctor willing to give a four-minute Spirometry test with annual physicals for early detection COPD and other issues, including asthma.  COPD leads down a path you might well avoid with early detection.

Cellulitis and Lymphedema can arrive by ignoring edema, as I did for years after my COPD diagnosis.  If you have edema, follow your doctor’s instructions to get rid of it.  Cut out the salt –whatever it takes – do it to avoid what is now for me, a chronic medical issue. Did I mention painful?  Do whatever it takes to avoid it…beginning with COPD early detection Spirometry.

The photos show the progression of this session of ER diagnosed Cellulitis and the good results from the quick action of the Harrison ER team, Dr. Jeffrey Morse, Tessie and Florida Girl.  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001858/#adam_000855.disease.causes

Cellulitis pain is a great leveler…after days and weeks of it, I can’t find my notes from the ER.  Tessie and Florida Girl are RN’s working the shift and the care they give er patients is extraordinary.

The plus side – it has been over a year since the last open weeping and leg pain thanks to getting patient education and lessons on wrapping legs from Mellissa Mercogliano, PT, OCS at the Center for Orthopedic & Lymphatic Physical Therapy in Port Orchard.

No water workout until this stuff heals.

Last week on the way to Harrison’s Silverdale ER, I needed to swing by the lab first and spotted the neatest, most comfortable looking shoes I have seen on anyone and asked about the shoes and ask if I could take a photo of them. The comfort and futuristic look is so impelling, I had to show you here.

Happy, healthy feet living in comfortable, balanced shoes with good traction go a long way to help make a healthy body.   Harrison folks rock on – fast, efficient, competent, friendly and wear sensible shoes to boot.

So long, Darcy Himes..not easily replaced as Harrison’s Communication person.  The beat goes on though and whoever takes her position at Harrison will have an easier job thanks to Darcy being there.    Darcy is a one of a kind – a superb communicator and problem solver with an amazing abundance of common sense and honest effective humanity to spare.

Swedish Hospital got lucky … Darcy fixes stuff behind the scenes with grace and insight and great ideas.  Best wishes Darcy – add me to your well-wishers in a heartfelt ‘thanks’ – all the best to you in your new career move and commute to the Seattle side and big world of Swedish Hospital.

Thanks for reading… Sharon O’Hara

Governor Christine O. Gregoire has proclaimed November 2011 COPD Month.

Thank you, Governor!

What low, no cost plans are in place for November’s COPD Month?

What plan of remembrance and activities does the medical community who serves COPD plan for patient/public awareness events during November 2011?

World COPD Day is Wednesday, 16 November 2011.

What medical groups have activities for COPD recognition, education and early detection Spirometry testing for the citizens of Kitsap County?

Harrison Medical Center’s partnership with the Better Breather’s Lung Support Group meets monthly in the Harrison Silverdale’s Rose Room.

Harrison Medical Center and Hazelwood YMCA in Silverdale have a superb lung/heart patient rehab agreement – what are they planning for November’s COPD Month 2011.

I am walking, triking or riding a scooter in recognition of World COPD Day 2011.  More later.

Thanks for reading… Sharon O’Hara

Spirometry is the easy, fast, inexpensive method to check for early detection COPD (Chronic Obstructive Pulmonary Disease) and enable the patient to STOP the developing COPD in its tracks. 

So, tell me – why don’t primary care doctors give the test when it could save lives from the third leading cause of death in the US?  In addition, stop the long, slow smother…

When will the Public Health get involved?

The doctors I asked were candid and claimed most patients will not change their environment even if their environment was the cause of the COPD to avoid the further continuation of the beginning of COPD.

Maybe the doctors I spoke to are right.  Maybe the patients have not seen what happens to the COPDers who go on to develop other medical conditions.

Perhaps some patients would not make the changes needed but others would if given the opportunity to decide.  However, without offering the test , the doctors chose for them.

I found the following straightforward Spirometry information when I was goggling for something else.

Spirometry is an affordable and reliable method for pulmonary function testing. This test carries no risk, requires only four minutes of patient time, on average, and is the only test available to the primary care physician for the early detection of chronic obstructive pulmonary disease (COPD including emphysema and chronic bronchitis), asthma, and other chronic lung diseases.

The National Asthma Education and Prevention Program (NAEPP) recommends spirometry as an essential component of asthma diagnosis and treatment in the primary care setting, yet fewer than 20% of primary care providers report routine use, a proportion that is even smaller among pediatricians than family physicians and internists.

    National guidelines for asthma and COPD recommend routine spirometry and research has shown that nearly one-third of pediatric patients are misclassified in terms of asthma severity without the objective measurements of spirometry. Learn more here (KING 5 NEWS Seattle).

The COPD Foundation call spirometry the gold standard for initial pulmonary function testing allowing detection of the disease at an early stage, when it is most amenable to treatment and perhaps reversal. Nonetheless, about 40% of primary care doctors do not have a spirometer in their practice and of those that do, one-third do not use them routinely.

    Starting in 2009, the Healthcare Effectiveness Data and Information Set (HEDIS) requires spirometry testing in the assessment and diagnosis of COPD. These HEDIS measures are required as part of the National Committee for Quality Assurance (NCQA) Accreditation Process for Commercial Health Plans.

The truth about spirometry

Myth: Spirometry has dubious value.

Reality: The National Lung Health Education Program (NLHEP) states that spirometry is one of the best clinical tests available for detection of lung disease and is better than blood pressure as a predictor of heart disease.

Myth: The test takes too long.

Reality: Spirometry can be completed in the primary care office in four minutes, on average.

Myth: The equipment is bulky and expensive.

Reality: While previously true, machines today are smaller for portability and available for under $2000. Hand-held office spirometers are developed with user-friendliness in mind, making them acceptable for use in a variety of primary care settings.

…

© 2009 University of Washington

interactive Medical Training Resources

University of Washington

Box 354920

Seattle, WA 98195-4920

T: 206-685-9699

F: 206-616-4623

imtr@u.washington.edu

http://depts.washington.edu/imtr/spiro360/about_spiro/

Thanks for reading…Now go ask your doctor about a Spirometry test.

Sharon O’Hara

New Spelling for COPD – HOPE

Chronic Obstructive Pulmonary Disease is slowly advancing in leading cause of death in the US and most recently pushed to the third place spot when Strokes dropped back to fourth leading cause of death in the US.

We have WALKS for research dollars – Cancer – Heart – Arthritis – all worthy causes – but no WALKS or RUNS for COPD.

Well – a new study results seem to prove that some patients with COPD can stabilize and some get better – this is HUGE, GUYS!  The first time I have read anything giving hope to a COPDer in terms of some of us helped beyond learning what we can do to help ourselves…and points out what I love about a teaching hospital such as the University of Washington Medical Center.  The professors teach their medical students to have open minds to the possibilities and now a researcher from …

“… University of Nebraska Medical Center scientist worked on the study, analyzing the results described in an article this month in the prestigious New England Journal of Medicine.

“This study, I think, will really result in a change in attitude toward COPD,” said Dr. Stephen Rennard, a professor of medicine at UNMC.

Physicians and patients for many years have believed that COPD inevitably worsened. A landmark study in Great Britain in the 1970s appeared to confirm this notion.

The disease does worsen for many. But a study of 2,163 patients in 50 clinics and universities, including UNMC and Creighton, showed that some didn’t worsen over three years. Some, in fact, got better.

Rennard said this gives reason for hope among lung specialists and patients, and it possibly will lead to more aggressive treatment.

The Rev. Adam Ryan, a Catholic priest at Conception Abbey in northwest Missouri, called the study’s findings “very good news for me.”

Ryan, 56, said he is a lucky COPD patient whose disease hasn’t worsened. Diagnosed with emphysema in 1991, he eventually stopped smoking, improved his diet and started exercising. He takes three medicines daily for his COPD…. Rennard said finding the reasons for stabilization or improvement, and what treatments seem to work, weren’t part of the study. That research remains to be done.

He said the study also found that those with moderate COPD seem to deteriorate more rapidly than those with severe disease. In the past, he said, doctors tended to direct treatments toward those with severe illness and less to those who were moderately ill with COPD. This, too, may have been a mistake, Rennard said.”

http://www.omaha.com/article/20110926/LIVEWELL01/709269970/1161

World COPD Day is Wednesday, 16 November 2011 and this year I am going to WALK/RIDE FOR COPD!

I’ve invited the governor to join in. – I hope she does.  She would be welcome to carry my COPD cycling safety flag.  My husband, Chuck, made it and noted Rosemaler and teacher, Lois Clauson of Bremerton painted it.

These legs were made for walking and triking.

World COPD Day, Wednesday, 16 November 2011

Thanks for reading… Sharon O’Hara

Update to my Kentucky medical story and a flip side of the same coin.

I spoke too soon on my belief that the American Medical Association would be interested in my comments about a Medicare patient and a doctor in a small town in Kentucky – but a “Kentucky Medical Complaint” Google search brought up some answers.

Update in my friends Kentucky case – she, as of Saturday, 24 September 2011 had not heard from the doctor for test results.  She called the local hospital where the cardio tests (2) were performed and told the results were in and she could pick them up.

She called the doctor’s office yesterday and told the PFTs were normal and the heart tests were normal too.  What justified the cardiac tests when the PFTs were normal?

Why would the PFT procedure be so different in a small town in Kentucky than in the rest of the nation?  Is the 29 days it took to wait for the doctor results due to a state raising fast horses and s l o w doctors in general or specific to one doctor in one small Kentucky town?

Having dependence on Medicare/Medicaid and being old, poor and trusting should not be a factor in a doctor’s way of making a living off the patients through unnecessary testing and no follow up contact with the patient.

The plus side is that she now has the physical test results of her lungs and heart but not a clue what they mean.  When she called the doctor’s office this time, she was told the results of the PFT and cardiac tests were ‘normal’.

Why did the doctor order cardiac testing if the Pulmonary Function Tests were normal?

I called the doctor’s office this morning, Monday, 9/26/11 and asked several questions including why the doctor didn’t call the patient in 29 days to give her the test results and was told that it can take two or three weeks to get the results and another week for the doctor to review the results.  My friend the patient was told two weeks.  When I asked why the cardiac tests were ordered when her PFT was ‘normal’ – BEFORE he spoke to the patient - I was told to call back later to speak with the office manager.

I was told if my Kentucky friend wanted to know the meaning of the test results, she should call and make an appointment with the doctor.

Fast horses and slow doctors in a small town in Kentucky – doesn’t seem right to me.  Are other seniors on Medicare/Medicaid being ill treated by this doctor? 

Are most Kentucky doctors as seemingly indifferent to their senior patients by failing to give test results in a timely manner and ordering cardiac tests without apparent need – or just this one based on my own PFT experience?

The flip side of the coin is the unfair treatment of the medical profession by Medicare and Medicaid.

I wrote the following in answer to a Letter to the Editor, Kitsap Sun:

“Well…health care costs...not one post has mentioned WHY doctors don’t take Medicare or Medicaid. The fact is physicians and the health care industry is the only profession in this nation that PENALIZES the doctor and health care businesses!

Any other business in the country can set their price and people pay it or go elsewhere. Not so the physician. Medicare and Medicaid pay only a fraction of the set price per service of each doctor.

Why should doctors take patients that COST them money to see them…they LOSE money.

If a plumbing business could take ten calls during the business day – why would they take a call from someone that will not pay their full price for the service?

Some doctors DO TAKE MEDICARE/MEDICAID patients and I for one – am grateful mine do.

I will mention here that I saw a medical devise recently that cost Medicaid/Medicare about nine thousand dollars per patient that has one. For a patient to buy it outright it cost about twelve thousand dollars.

If that isn’t outrageous enough for you – my opinion of the value of the devise – it MIGHT be worth one thousand dollars TOPS.

In my opinion, what seems to be happening in some cases is that the health care folks have tacked outrageous prices on cheap junk to make up for the low Medicare/Medicaid set prices.

Who loses? WE DO! The taxpayer AND the patient.”

Read more: http://www.kitsapsun.com/news/2011/sep/19/letter-to-the-editor-state-shouldnt-cut-more/#ixzz1YsPjzSZ4

http://www.kitsapsun.com/news/2011/sep/19/letter-to-the-editor-state-shouldnt-cut-more/

Speaking of a medical determined momma squirrel in Silverdale…

Thanks for reading… Sharon O’Hara

What role are some physicians playing in this health care fiasco game?  Well I know about one doctor and one hospital playing some kind of game with a Medicare patient in a small town in Kentucky…or so it seems to me.

I wrote this as a COPD and Other Stuff blog post but a Letter to the Editor caught my eye.  http://www.kitsapsun.com/news/2011/sep/19/letter-to-the-editor-state-shouldnt-cut-more/#ixzz1YUDgiCeE and I posted it in two parts there.

As a COPDer (Chronic Obstructive Pulmonary Disease) teamed with Sarcoidosis, I’ve gotten copies of my Pulmonary Function Test (PFT) print-outs for over a decade.   It is standard.   Take the test, get a print-out.   My doctors are wonderful and I supposed other doctors had the same ethics and took the same care of their patients.   Now I wonder.

An old friend lives in a small town in Kentucky – a place I’ve googled and then scrolled the streets from my computer – thanks to Google’s trike and camera carrying rider – and I’ve enjoyed seeing what a wonderful, historic, town it is.

Over the past fifty years I’ve visited my family friend in other small and large towns in Kentucky and highly enjoyed the horses, farms and people I’ve met there.

Recently my friend (call her Sarah) had Pulmonary Function Tests done on 11 August 2011 but was not given a copy of the test result printouts.   She was told someone had to read the results and she would get a call within two weeks.

Twenty-nine days passed without a call.   I suggested she contact the hospital and doctor’s offices and I, myself, made a few calls.   The first one was to the local newspaper to check and see if local people were being medically scammed, then to the hospital where I explained the problem and asked their procedure and was told the doctor had all the information.  I asked for the doctor’s number and she said she could just transfer me.   I thanked her and soon spoke to a member of the doctor’s staff.   The woman told me the information was still with the hospital, where the test was done and seemed surprised when I related that the hospital said the doctor had the results.

Sometime during the phone conversations, Sarah called to tell me that the hospital told her to call them ‘tomorrow’ between 3 and 4 PM and they would have the test results then.

I had told her to call them repeatedly until she got answers.   Based on my experience with PFT results the hospital and doctors office lack of information was inexcusable.   On one occasion, the doctor’s office advised me that a cardiologist had to read the results.   I was astounded that no pulmonologist seemed to be involved and I carefully explained to her that one of the country’s leading pulmonologists was right there in Lexington.   At that point, we lost the connection and I hung up.

Later (that day), Sarah called to advise that the hospital not only had the test results now but that she could pick up that day; she was also told that she had been scheduled for both echo- and an electro-cardiogram tests.  She was not told why the additional tests were belatedly ordered, but that they were ordered by the same doctor who ordered the original PFT!  “The same doctor who hasn’t bothered to contact you about the PFT’s?”,  I asked…

I suggested that she go the University of  Kentucky Medical Center in Lexington and have the tests run by people who knew what they are doing.   She agreed with me – she wanted the best.  At least, that was then.

This morning (Monday, 9/119/2011) she called to tell me she just completed the tests, and I asked her where?  “In the same hospital,” she said, “where the technician told her Dr. xxxxxxx was just too good – that his front office people all needed to be fired.  And when I see the doctor I’ll have a few things to say to him!”

I did not suggest she had no guarantee the seemingly incompetent greedy doctor would even bother calling her.  He had her take the tests he ordered, presumably billing Medicare, and I was speechless at her behavior.   For one of the rare times in my life…  I had nothing to say.

I intend to contact the American Medical Association and give them the full particulars, including names because something is very wrong when a doctor doesn’t contact a poor Medicare patient for at least 29 days after the testing when she was told she’d be provided with the results within two weeks.  Even two weeks is an absurdly long time when other lung patients, using other doctors, often get copies before exiting the appointment at which such tests are administered.

So tell me, is someone working the system or am I overreacting to apparent incompetence or graft?  The patient or the doctor?

Thanks for reading… Sharon O’Hara

Alpha-1 is coming to town!  Silverdale to be exact – in the Rose Room at Harrison Silverdale to be more exact – 1:00pm to 3:00pm and we are all excited.

Mark Wednesday, 21 September 2011 for Better Breather’s partnering with Alpha-1 and Free Testing for the Alpha-1, a genetic component of Emphysema (COPD)

“American Thoracic Society (ATS) Guidelines

ATS guidelines recommend testing a broad range of patients with lung conditions:1

All adults with symptomatic emphysema regardless of smoking history

All adults with symptomatic COPD regardless of smoking history

All adults with symptomatic asthma whose airflow obstruction is incompletely reversible after bronchodilator therapy

Asymptomatic patients with persistent obstruction on pulmonary function tests with identifiable risk factors (smoking, occupational exposure, etc.)

Consider testing of asymptomatic individuals with persistent airflow obstruction without risk factors (no smoking or no known occupational exposure, etc.)”

The speaker is Nancy Bartholomew, with Prolastin-C from Grifols Inc.

I have included this photo taken from ATS “Rare Lung Diseases” because seeing it broke my heart.  It shows a ‘mother and her baby poignantly illustrating the fact that young women can be the victim of rare lung diseases.”

If we do not test, we cannot know and could easily be misdiagnosed and medically treated for the wrong condition.

… taken from American Thoracic Society (ATS) online “Some of the most exciting discoveries in pulmonary medicine have come from studying rare diseases. Insights gained from uncommon lung diseases often shed light on more common lung diseases…”  http://www.thoracic.org/education/breathing-in-america/index.php

Web sites of interest

National Institutes of Health Rare Diseases Clinical Research Network

www.rarediseasesnetwork.org

Orphanet  – About Rare Diseases

www.orpha.net/consor/cgi-bin/Education_AboutRareDiseases.php?Ing=EN

LAM Foundation

www.thelamfoundation.org

Hermansky-Pudlak Syndrome Network

www.hermansky-pudlak.org

Tuberous Sclerosis Alliance

www.tsalliance.org

Look for a table and chairs set up and friendly Harrison folks…Joyce is the RRT Harrison volunteer Better Breathers liaison…we are lucky to have her.

Rose Room – Harrison Silverdale

1800 NW Myhre Road – Silverdale, WA 98383

Better Breathers Support Group

“Our Better Breathers support group encompasses community members and their caregivers who live with chronic respiratory disease and lung disease. Better Breathers is designed to provide support, education, networking, and tools to improve the daily lives of those living with these health conditions.

We welcome any community member with asthma, emphysema, chronic bronchitis, sarcoidosis, asbestosis, pulmonary hypertension, pulmonary fibrosis and the many more lung diseases affecting our population, pediatric or adult.

Please email or call if you will need assistance with parking at the meeting.”

Contact: Pamela O’Flynn   – 360-744-6687 – respiratorycare@harrisonmedical.org

If anyone needs a ride, contact me.

Thanks for reading… Sharon O’Hara

AWAKE TONIGHT!    Ever wonder about an increasing sleepiness yourself or life partner?  Well, sleepiness may well mean more than boredom at home – it may mean SLEEP APNEA – a potentially deadly medical condition and fixable.

Thursday, September 15 – 7:00pm – 9:00pm

PROGRAM:  C- Pap or Bi-Pap Maintenance and Your Health.

SPEAKER:     Kate Whettam, Resmed

Questions welcome

AWAKE is for people living with sleep disorders and their families and meets the third Thursday of every three months (March, June, September and December).

9/15/2011     7:00pm – 9:00pm

Harrison Annex

750 Lebo Blvd.

Bremerton, WA 98310

Contact Info:   360-479-8022 x4

http://www.harrisonmedical.org/home/calendar/4875

Thanks for reading… Sharon O’Hara