Tag Archives: doctors

Do Lung Doctors in Kitsap County Neglect Support Group Patient Education

Lung patients need active physician involvement in support groups, particularly for non-cancerous lung patients including COPD, the 3^rd leading cause of death in the US. For many of us COPD is only the beginning of medical conditions including Sleep Apnea.

We are fortunate that Harrison’s Respiratory Department has gotten more involved and active in support services for lung patients and the Better Breather’s monthly programs are becoming a Don’t Miss.

That said last month’s program was the beginning of another round of new stuff and no MD to connect all the dots. Pulmonary support groups NEED direct physician involvement. I know they are busy. So are the patients. We want to be educated and the physician is the only person to answer medical questions.

Joyce had Cheryl Ball, Respiratory Therapist in charge of the Sleep Apnea program with guest speaker, Jeff Lackey, Patient Care Coordinator of Pacific Pulmonary Services. Both did a great job inciting keen interest, as you will see in the following photos.

I wrote the following post in answer to the Kitsap Sun Reporter Rachel Pritchett’s article that Harrison Medical Center’s Heart Surgeons won a second year of the highest rating given for Bremerton Cardiothoracic Surgery.

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“The most successful support group – or one of them – is AWAKE, the Sleep Apnea support group in Kitsap County.

Why? It is physician led.

Well. It is time for lung doctors to step up to educate the Better Breather’s pulmonary support group.

I recently attended a BB meeting and too many questions could not be answered by the knowledgeable techs present – they needed answering by doctors who know the whys and wherefores of sleep apnea.

Educating patients is vitally important and the lung patients have been sadly neglected…yes, I do understand about the money trail in popular medical conditions.

Many of us lung patients kick off due to heart disease caused by lung issues. It’s no small wonder that COPD is now the third leading cause of death in the US considering that educating lung patients is at the bottom of the physician scale of things to do.

Am I being unfair to busy physicians? I am a patient – the answer is NO.

Doctors – get involved with educating us. Please!

Contact Harrison’s Pam or Joyce (Respiratory) for scheduling a PHYSICIAN speaker for the next Better Breather’s meeting.

“…Harrison HealthPartners Bremerton Cardiothoracic Surgery is part of a larger group of Harrison Medical Center heart physicians called Harrison HealthPartners Thoracic and Vascular. “The bigger group also includes vascular surgeon Dr. George Berni and vascular surgeon Dr. Shankar Sundaram, who begins later this month.”

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Part 1 of 2

Gabriel, medical miracle baby and g’g’ma’s recumbent trike …

http://www.youtube.com/watch?v=Zi8FufDkSDQ

Thanks for reading… Sharon O’Hara

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Political Medicare and Tricare Travesty

Sharon O'Hara

Greetings…Medicare and Tricare patients – we may soon be up that creek without a paddle if we don’t take action now. I sent the following letter this morning to my legislators through the American Medical Association’s website to protest against further cuts to our physicians. They are already penalized by taking Medicare and Medicaid patients now. If this new cut goes through, patients like us won’t even have a canoe up that creek, much less the paddle.

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“Dear Legislator’s… Don’t force physicians to make the choice to of not treating Medicare or Tricare patients or go out of business for lack of income and not be able to treat anyone.

The medical profession is the only profession in this nation to be penalized by the work they do – working in health care. accepting Medicare or Medicaid patients penalize the very people working to provide health care to our citizens – our physicians.

Forcing additional physician related medical cuts will effectively take care of too much government care costs by getting rid of seniors and our retired military to make room for the baby boomers beginning to enter the system. Is that what you want?

I fit into both categories, a senior on Medicare and Tricare. My medical team already loses money every time they see me.

How dare the government control what should be private industry KNOWING these additional cuts will drive doctors out of business and/or be a death warrant for patients like me left stranded without medical assistance.

My husband is retired military, we’re both seniors – he is my ‘caregiver.’ I have COPD, Sarcoidosis, Bone on Bone left hip Arthritis, RLS, Lymph-edema, Psoriasis and Other Stuff.

My parents legally immigrated to this country, the land of their dreams, knowing they were only limited by their own imagination and willingness to work. For shame that America could be reduced to a government willing to harm their retired military and seniors by reducing the medical care needed for their survival.

The Medicare patch Congress passed last June is only a temporary reprieve for the seniors and baby boomers who rely on the promise of Medicare. In December, the Medicare cut to doctor services will be a whopping 23 percent, increasing to nearly 25 percent in January.

It’s a tragedy that Congress has let Medicare erode into an unreliable, unstable system for both patients and their doctors.

We need a long-term solution to this annual problem, so you will no longer need to apply short-term Band-Aid fixes to stop impending cuts that get worse year after year. And don’t forget – baby boomers begin entering Medicare soon, and if this problem isn’t fixed, these new Medicare patients may not be able to find a doctor to treat them!

The vicious cycle of short-term delays that make the cuts worse and raise the cost of real reform for American taxpayers must come to an end.

This is a dangerous game of Russian roulette with seniors’ health care. Sick patients can’t wait any longer for you to do the right thing. Please stabilize this broken payment system before the damage is done and cannot be reversed.

Don’t allow a bad system to get worse.”

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Please let your voice be heard.

http://www.ama-assn.org/

Sincerely,

Sharon O’Hara

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Why Pay $150,000 Year for a Lung Drug if it Does Not Work?

Sharon O'Hara

The Apha 1 group comprises about 10% of COPDers but they are the group who has made great organizational strides in bringing public awareness to COPD (Chronic Obstructive Pulmonary Disease)
They are politically astute and I like most of the folks I’ve met in the organization.

That said… the idea of paying $150,000. a year per person for a drug that, at best, does nothing for the patient is OUTRAGEOUS!

There is little to no research being done for regular COPDers…if this study is accurate, why can’t we use that wasted $150,000. Per patient for RESEARCH?

Roll the drug manufactures out of the profit at any cost bed and use the money where it will do the most good for the most people.
Why not?!

I am including the following verbatim for obvious reasons.

Wasted drug dollars? NO!
Research dollars for the COPD majority benefit? YES!

“Pricey lung disease drugs have no benefit: study

URL of this page: http://www.nlm.nih.gov/medlineplus/news/fullstory_100767.html (*this news item will not be available after 10/04/2010)

Tuesday, July 6, 2010
By Kate Kelland
LONDON (Reuters) – Recommendations for expensive treatments made for a genetic disorder called alpha-1 antitrypsin deficiency should be withdrawn because the drugs have no benefit, scientists said on Wednesday.

The disorder causes chronic lung disease and researchers who reviewed data from two trials on 140 patients with it found no evidence that alpha-1 antitrypsin medicines — made by various drugmakers including Talecris, Kamada, CSL and Baxter — do any good.

Based on this evidence, the researchers said the treatment, which costs up to $150,000 a year in the United States, should not be recommended by doctors and advocacy groups.

“The drug has not shown any clinical benefit, is extremely costly and has important adverse effects,” said lead researcher Peter Gotzsche of the Nordic Cochrane Center at Rigshospitalet in Copenhagen, Denmark.

“In view of the lack of evidence and high cost of treatment, treating alpha-1 antitrypsin deficiency by replacement therapy cannot be recommended.”

According to the team, whose work was published in The Cochrane Library journal, recommendations by the American Thoracic Society and European Respiratory Society that promote alpha-1 antitrypsin replacement are “misguided”.

“Both societies recommend augmentation therapy for patients with breathing problems related to alfa-1 antitrypsin deficiency. In our opinion, these recommendations are not reasonable,” said Gotzsche.

Alpha-1 antitrypsin deficiency affects less than one in 1,600 people. Those who inherit the disorder have low levels of the protein alpha-1 antitrypsin, also called alpha-1 proteinase inhibitor, which protects the tissue of the lungs from destruction by the body’s own white blood cells.

At a relatively young age, this can result in symptoms of emphysema, including shortness of breath and wheezing.

The aim of alpha-1 antitrypsin replacement therapy is to give the patient back the protective protein they are missing. This should limit damage to lungs and, ultimately, prevent early death. The protein is usually extracted from blood donated by healthy volunteers.

The researchers reviewed data from two trials involving a total of 140 people with the disorder, all of whom were at a high genetic risk of developing chronic lung disease.

In one trial, patients were given intravenous alpha-1 antitrypsin or a placebo every four weeks for three years and in the other, the treatment or a placebo was given weekly for a minimum of two years.

There was no difference between treatment and control groups in terms of exacerbations of lung disease, or quality of life, the researchers found. Combining the results from the trials, Gotzsche’s team also found no evidence of a clinically important effect on lung function.

“Indeed the results suggested modest harm, or at best no effect,” they wrote in their study. They added that while the treatment might cause a reduction in the deterioration of lung appearance on CT scan, it was “not clear whether this is a clinically meaningful difference.”

http://www.nlm.nih.gov/medlineplus/print/news/fullstory_100767.html

More later… Sharon O’Hara

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India’s Doctors Top the Educate COPDer List

Sharon O'Hara

India is the first country I know of to begin a doctor sponsored Asthma-COPD Club (AC Club) for patients…Whoopee!

Maybe the U.S. is next…maybe Kitsap County doctors will consider beginning a club to educate COPDers as the
Department of Chest Medicine at Karamsad-based Shree Krishna Hospitla in Anand, does.
Diagnosing, running tests and handing the patient prescriptions and appointment card for their next visit is not good enough. Patients leave the doctor’s office, in many cases knowing little about the disease/s and how best to live with it and what they can do to best help themselves…such as ride the recumbent trike safely for exercise and fun.
Recently I called our own Harrison Medical Center to ask what they had planned for COPD Day. The operator asked what COPD is. A little over a week later, I visited my son in Harrison, Bremerton and was helped by an energetic, friendly and helpful person. I showed her my “Rearing For Health” over a funny looking rearing horse and “What Is COPD” below the horse tee-shirt.
That wonderful, helpful, Emma Reeves asked, “What is COPD?”
Chronic Obstructive Pulmonary Disease is the 4th leading cause of death in the U.S., 5th in the world. Diabetes is 5th leading cause of death.

“Doctors who have initiated the club say that World Health Organization estimates suggest that 210 million people suffer from Chronic Obstructive Pulmonary Disease (COPD) worldwide and that, at present, more than 90 per cent of COPD deaths occur in developing countries. The club already has 350 patients enrolled and will provide free consultation and pulmonary function test (PFT) to patients while spreading awareness so that other organizations turn Smoke Free.”

“It is estimated that COPD will become the third leading cause of death by 2030. In a country like ours, effective prevention and regular treatment is the key to check progression of COPD, which can otherwise result in significant burden to our society in terms of healthcare expenses,” professor Dr Rajiv Paliwal told TOI on Saturday, adding that asthma and COPD are two diseases due to which patients suffer from breathlessness.

“While asthma is a genetically determined, COPD is not a familiar disease. Earlier, it was believed that COPD occurs only to smokers but even non-smokers are increasingly being affected by the disease due to high air pollution. Females in rural areas catch COPD because of the use of chullas’,” said Paliwal, adding that the club will help pulmonary rehabilitation of patients.

Usually, patients suffering from such kind of breathlessness become socially isolated, which in turn depresses them. “This results in a vicious circle as their breathlessness increases due to depression,” said professor Dr Satish Patel.

“Patients who join the club are not only given free consulting and education, but they are also given nutritional advice, physiotherapy treatment and counselling,” says Patel, adding that so far there is no national programme from the side of government on COPD. “GOI is thinking of taking up a public awareness drive but it will take few more years before it starts one,” he added. “

prashant.rupera@timesgroup.com
http://timesofindia.indiatimes.com/city/vadodara/Countrys-first-club-for-breathlessness-ailments-starts-in-Anand/articleshow/5280746.cms
Thanks for the heads-up, Linda. www.emphysema.net

More later… Sharon O’Hara

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COPD is Scream Worthy according to a Kitsap Sun Blogger.

Sharon O'Hara

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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