Tag Archives: cholesterol

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

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. “


More later… Sharon O’Hara

Sarcoidosis 2010 Schedule and Research Study

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:
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.

407 14TH AVENUE SE – Puyallup
Baker Room – 1:00pm – 3:00pm


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
1:00pm – 3:00pm

NOVEMBER – No Meeting

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



Lynn Short, Executive Director
Sarcoidosis Networking Association
5302 South Sheridan Avenue
Tacoma, Washington 98408 USA

More Later… Sharon O’Hara