Tag Archives: lung

Do Lung Doctors in Kitsap County Neglect Support Group Patient Education, part 2

Obstructive Sleep Apnea is serious. A recent Swiss study shows that even a short break in using the CPAP is harmful:

“Within 14 days, they had significant increases in heart rate and blood pressure, and deterioration in vascular function. The results suggest that even a short break in CPAP therapy has a negative effect on the cardiovascular system … OSA patients need to continuously use CPAP….” …according to US News and World Report. Presumably, that goes for those of us on the BIPAP machine too.

Then there is …

Lack of treatment can lead to mental confusion, dementia and Alzheimer’s.

A physician could have answered the questions that ensued.

New Medicare rules say the patient must be on the machine 4 hours a night for the entire CPAP or BIPAP rental period – no matter what – or lose the machine.

As a patient with RLS, I take meds for – Mirapex that no longer works – that is worrisome. The fact is sometimes I cannot stay in bed where the only relief from RLS is to stand up and/or walk.

When I asked about the 4-hour Medicare rule when a person has other medical conditions, I was told I had to make the choice – the BIPAP or RLS. – Not a choice at all for me and many patients like me.

A plus here is that the last session was so bad that I spent the entire night standing up using my laptop at the kitchen counter and came to the conclusion I think a food allergy may play a part in my RLS problem. I will talk to my doctor about it.

Harrison has a superb respiratory department team – professional people, open and transparent. Patients need to be educated and Harrison is stepping up with professionals educating us….but we need more physician involvement to answer the tough medical questions for pulmonary support group patients. In Kitsap County, it is past time for physician pulmonary education now.

COPD and Sleep Apnea is a huge medical dilemma where ignorance might well be bliss for the patient…but not in the long term. What happens when we do not get oxygen to our organs?

For starters, we lose brain cells without the oxygen to sustain them. Our lessor organs begin to fail because the larger organs grab the available oxygen first.

Incontinence is only one of many issues that can occur from lack of oxygen to organs…

No doubt, most of my brain cells are long gone so I have one less thing to think about. My point here is to suggest you not to lose yours if it can be avoided. Patient education is key to having the best quality of life possible with any medical condition and we NEED lung support group physician involvement.

http://pugetsoundblogs.com/copd-and-other-stuff/2011/08/13/do-lung-doctors-in-kitsap-county-neglect-support-group-patient-education/

The U.S. National Heart, Lung, and Blood Institute have more about sleep apnea treatments.

http://www.nhlbi.nih.gov/health/dci/Diseases/SleepApnea/SleepApnea_Treatments.html

http://health.usnews.com/health-news/family-health/sleep/articles/2011/08/12/sleep-apnea-makes-quick-return-when-treatment-stops

Better Breather’s meeting Wednesday… http://www.harrisonmedical.org/home/calendar/4897

If anyone needs a ride, let me know…the car is super clean.

Thanks for reading… Sharon O’Hara

We all cheer for the GREAT MEDICAL CARE already in Kitsap County…and for more Pulmonary Physician support group education.

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Kitsap County African-American and Asian-American COPDers Are Missed in Lung Patient Meetings

Sharon O'Hara

What role does ethnic ancestry (race) have to do with COPD? Yesterday’s information packed Harrison Medical Center/Better Breather’s support group meeting brought home the work ethic of the Norwegian immigrants I knew growing up and remember thinking I am glad to be born Norwegian American of immigrant parents.

That said, I thought of other races/ethnic immigrants to this country and their same work ethic and realized that I don’t recall seeing a person of obvious racial differences at any COPD meeting I’ve attended in the years I’ve had COPD. (1997)
We all share the same American pride of heritage but none of it matters with COPD or any chronic disease. Under the skin, we all look the same: brain, heart, lungs, liver and so on. Disease generally does not know race, religion, gender or age and does not stop at borders. We are sisters and brothers under the skin – our lungs are damaged, not our varied cultures and pride in them.
We have damaged lungs – permanently damaged yes, but we can get educated how to help ourselves live a quality life – all of us.
Yesterday’s Better Breather’s meeting was a ‘don’t miss!’ for lung disease patients and I would like to know why non-Caucasians were missing?

I feel lucky in my heritage, as I know everyone feels about his or her heritage and culture. We share lung disease and should be equally educated as patients. As a Norwegian/American lung patient, what can I do to get you to these incredible meetings?

Speaker Aaron spoke to how he, as an exercise induced asthmatic child got over it in two years -I’ll tell you in the story I’m writing and posting soon, but you should have been there.

Take care of yourself, get educated because Harrison is getting hot to educate patients. Hope to see you at next month’s meeting.
Following is the African-American COPD story in Chest in 2009 and the Asian-American COPD story 2011.

African-Americans with COPD Use Fewer Health Services
New research shows that African-Americans (AA) with chronic obstructive pulmonary disease (COPD) use fewer health services than Caucasians with the condition. Researchers from the University of Maryland compared health services utilization and cost outcomes in 4,723 AA patients and 4,021 Caucasians with COPD, asthma, or both. After controlling for age, gender, cohort allocation, and comorbidities, results showed that AA adults with COPD, asthma, or coexisting asthma and COPD used fewer medical services and accounted for lower medical costs than Caucasians.

The authors speculate that the differences in utilization and medical costs may provide an explanation for the racial disparities in outcomes of patients with COPD and asthma. The article is published in the August issue of CHEST, the peer-reviewed journal of the American College of Chest Physicians.
http://www.chestnet.org/accp/article/african-americans-copd-use-fewer-health-services

Ethnicity and Risk of Hospitalization for Asthma and Chronic Obstructive Pulmonary Disease.
Tran HN, Siu S, Iribarren C, Udaltsova N, Klatsky AL.
Departments of Medicine (H.N.T.) and Pulmonary Medicine (S.S.), and the Division of Research (C.I., N.U., A.L.K.), Kaiser Permanente Medical Care Program, Oakland, California.
PURPOSE:

To identify ethnic differences for risk of hospitalization for asthma and chronic obstructive pulmonary disease (COPD).
METHODS:

We undertook a cohort study with 126,019 participants: 55% whites, 27% blacks, 11% Asians, and 4% Hispanics. To estimate asthma and COPD risk, we used Cox proportional hazards models adjusted for age, sex, body mass index, education, smoking, and alcohol intake. End points were hospitalizations for asthma or COPD.
RESULTS:

Compared with whites, relative risks (RR) with 95% confidence intervals (95% CI) for asthma among other groups were: blacks, 1.7 (1.4-2.0); Hispanics, 0.9 (0.6-1.4); and Asians, 1.6 (1.2-2.1). Among Asians, increased risk was concentrated in Filipino men and women and South Asian men. For COPD, whites were at highest risk; RR of blacks was 0.9 (0.7-1.0); Hispanics, 0.6 (0.3- 0.9); and Asians, 0.4 (0.3-0.6). COPD risk among Asians was lowest in Chinese with RR of 0.3 (0.1-0.5).

CONCLUSIONS:

Ethnic disparities in risk of asthma and COPD as well as between both diseases exist, especially for Asian Americans, who have high asthma risk and low COPD risk. While residual confounding for smoking or other environmental factors could be partially responsible, genetic factors in Asians may be involved in decreased COPD risk.
Copyright © 2011 Elsevier Inc. All rights reserved.
http://www.ncbi.nlm.nih.gov/pubmed/21414801

The bottom line is anyone with lung/pulmonary disease needs to become educated so that we can live the best life possible as long as possible. Exercise makes a difference.
More later…thanks for reading… 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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Sarcoidosis 2010 Schedule and Research Study

Sharon O'Hara

Sarcoidosis in our area has a great following of dedicated Sarcoidosis patient volunteers who work hard to share the latest research information to benefit us, the Puget Sound Sarcoidosis’ites.
For those unfamiliar with Sarcoidosis:
http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html
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Sarcoidosis Research Study
Pulmonary Sarcoidosis Treatment Trial
If you have been diagnosed with sarcoidosis of the lung, you may be eligible to participate in a study at the NIH Clinical Center. The purpose of this study is to determine if a widely used cholesterol-lowering agent can decrease the amount of prednisone (steroids) required to manage your illness. Eligible patients will receive a comprehensive evaluation at the Clinical Center in Bethesda, Maryland.

There is no cost to you for travel or medical testing.

For further information, please contact our research coordinator, toll free, at 1-877-NIH-LUNG (1-877-644-5864), e-mail: LungStudy@nhlbi.nih.gov, or you may call Sandra MacDonald, RN at 301-451-4899. Alternatively, you may reach the NIH Patient Recruitment and Public Liaison Office via TTY 1-866-411-1010.
**********************************

Following is the 2010 Sarcoidosis Support Group Meeting Schedule for the Puget Sound area.

Most meetings are held in the BAKER Room at Puyallup’s Good Samaritan Hospital…. 1:00pm – 3:00pm.

SARCOIDOSIS NETWORKING ASSOCIATION
GOOD SAMARITAN HOSPITAL
407 14TH AVENUE SE – Puyallup
Baker Room – 1:00pm – 3:00pm

2010 SNA SUPPORT MEETINGS

JANUARY – Saturday, 9th 1:00pm – 3:00pm

FEBRUARY – No Meeting
MARCH – No Meeting

APRIL – Saturday, 10th
1:00pm -3:00 pm

MAY – No Meeting
JUNE – No Meeting

JULY – Saturday, 10th
PICINIC at the Short Home
1:00pm – 3:00pm

AUGUST – No Meeting
SEPTEMBER – No Meeting

OCTOBER – Saturday, 9th
BAKER ROOM
1:00pm – 3:00pm

NOVEMBER – No Meeting

DECEMBER – Saturday, 11th
BAKER ROOM
1:00pm – 3:00pm

GOOD SAMARITAN HOSPITAL
407 14TH AVENUE SE
BAKER ROOM
PUYALLUP, WASHINGTON

Contact:
LYNN SHORT (ANNUAL PICNIC)
5302 SOUTH SHERIDAN AVENUE
TACOMA WASHINGTON 98408

Lynn Short, Executive Director
Sarcoidosis Networking Association
5302 South Sheridan Avenue
Tacoma, Washington 98408 USA
http://www.sarcoidosisnetwork.org/

More Later… Sharon O’Hara

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Air Quality for Air Breathers

Sharon O'Hara

The American Lung Association of Washington has many great services for lung challenged folks – sending air quality alerts to those who sign up for it is one of them.

Until KS’s own weather fellow, Matthew Leach, “Forecasting Kitsap” blog http://pugetsoundblogs.com/forecasting-kitsap/2009/07/26/excessive-heat-watch-issued-the-heat-and-humidity-has-arrived-folks/
begins announcing the daily and forecast air quality with his reports, I will do it here, thanks to the ALAW notice.

Maybe Matt can tell us what “Numerical Value” means. For a moderate breathing day, it is 51 – 100.

Many lung challenged folks cannot breathe in hot moist air. For me, a humid hot day is like trying to breathe through a warm soaking wet thick wool blanket and then I move.

Many of us carry a small battery operated fan – I attached them to my dog crates when we had to travel on a hot day and they helped move air on days without a breeze when we stopped and had the doors wide open for ventilation.

Today’s air quality is green – good.
Tomorrow is not so good. Following is the moderate forecast for tomorrow and brief description..

“Air quality is Moderate. Sensitive people should take necessary health precautions during this time. Weather changes can affect air quality quickly so please pay attention to your local weather forecasts.

For more information about air quality and your health, visit website at www.alaw.org, or call us 1-800-LUNG-USA.
Air Quality Index

Level of Health Concern Numerical Value
51-100
Meaning
Air quality is acceptable; however, for some pollutants there may be a moderate health concern for a very small number of people who are unusually sensitive to air pollution.

Weather Conditions:
…
Summer – Hot and sunny conditions. A temperature inversion exists, creating stagnant air and trapping pollutants close to the ground. Conditions may include light/moderate winds. High pressure system, haze or partly cloudy skies.

Health Information:
Sensitive individuals and people with respiratory disease should consider limiting prolonged outdoor exertion.
If you have asthma make sure you have an Asthma Management Plan to follow.

Action You Can Take Now:

• Avoid using your woodstove or fireplace and burning outdoors to reduce health harmful particulates in the air.
• Drive Less. Automobile exhaust and diesel emissions account for the bulk of harmful particles in the air.
• Leave your car at home. Work at home, take the bus or carpool to work.
• “Trip-Link” errands to reduce vehicle trips.”

In addition, the American Lung Association of Washington offers free air quality home assessments by their volunteer driven program, Master Home Environmentalist. alaw@alaw.org (206) 441-5100 or 800-LUNG-USA.

…thanks for dropping by… Sharon O’Hara

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