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Lymphedema = Pain = More Pain = Avoidance = Get Educated = Get Fit

Lymphedema = Pain = More Pain = Avoidance = Get Educated = Get Fit

National Lymphedema Network – Educating Patients Online

Part 3b of 3b

Exercise and Compression Garments:

Lymphedema Remedial Exercise as a part of CDT requires compression garments or bandages.3-5 There are no studies on the use of compression garments when performing stretching or flexibility exercise alone.

Our visiting young cousin from Norway rode her first recumbent trike in Silverdale and wore "What is COPD" tee shirt while she was here. — Our visiting young cousin from Norway rode her first recumbent trike in Silverdale and wore “What is COPD” tee shirt while she was here.

My young cousin, Malin from Norway is included here because COPD (Chronic Obstructive Pulmonary Disease) began in 1997 for me and led into my long ride into medical conditions – one after the other and my gathering weight attracted lymphedema as surely as fresh bread and butter sticks to peanut butter and strawberry jam.

“The NLN Medical Advisory Committee (MAC) recommends using the guidelines for aerobic and resistance exercise to guide use of compression during flexibility exercise since flexibility exercises may be combined with other forms of exercise.

The amount and type of compression for exercise should be decided with input from a professional knowledgeable about lymphedema. There is no strong evidence basis for the use of compression garments during exercise; however, most experts in the field of lymphedema advise the use of compression during vigorous exercise for people with a confirmed diagnosis of lymphedema.

Melissa showing me the latest fast, protective lower leg support

Melissa Mercogliano, Center for Orthopedic & Lymphatic Physical Therapy in Port Orchard, WA. recently showed me a new and easy way to add support stockings…easy except for we Tub’ettes.

“One study suggested that individuals with lymphedema who do resistance exercise without compression may increase swelling.

20 Resistance exercise may reduce limb volume when used as an adjunct to compression therapy in people with confirmed lymphedema.

8 One study showed that aerobic and weight-lifting exercise was safely performed without compression in women at risk for breast cancer-related lymphedema.

9 That study showed patients who developed lymphedema could continue to exercise with compression garments. Compression garments should be measured by an individual trained and experienced in fitting compression garments for lymphedema and should be at least Class I compression for upper extremity. Higher classes may be required for more severe lymphedema and for lower extremity lymphedema.

Custom sized, each leg. This pair is old...notice the crinkles below the rubber dotted band. The replacement compression stockings are black.This pair is about one year old. — Custom sized, each leg. This pair is old…notice the crinkles below the rubber dotted band. The replacement compression stockings are black.
This pair is about one year old.

I throw the stockings in a little zippered mesh cloth bag and into the washer on a short cycle, regular soap, extra rinse – cold water and smooth out and let them hang to dry.

I prefer the toe less stocking so my toes don’t get scrunched up and have two different kinds. The little rubbery tips around the tops of both help them from sliding on down my leg and cutting off circulation. Ask your doctor.

“A hand piece (gauntlet or glove) is recommended when exercising with a sleeve to avoid causing or exacerbating hand swelling.

Definition of Individuals At Risk for Lymphedema:

Individuals at risk for lymphedema have not displayed signs and symptoms of lymphedema but may have sustained damage to their lymphatic systems through surgical lymph node removal or radiation therapy.

Additionally, individuals at risk may have surgical incisions in the vicinity of lymph transport vessels.

Individuals who have family members with hereditary lymphedema may also be at risk.

An individual’s risk of lymphedema may change over time depending on factors such as weight gain, age, and changes in medical condition.

It is the position of the NLN that:•

Exercise is a part of a healthy lifestyle and is essential for effective lymphedema management•

Before starting any exercise program, individuals should be cleared for the program of activity by their physician.•

Lymphedema Exercises (also known as Remedial Exercises) are specific rhythmic muscle and breathing exercises used as a part of lymphedema treatment in Phase I and Phase II

Complete Decongestive Therapy (see the NLN Position Paper on Diagnosis and Treatment). http://www.lymphnet.org/pdfDocs/nlntreatment.pdf

In Phase II lymphedema maintenance, these exercises can be combined with or integrated into a regular exercise program.•

After intensive treatment with CDT, the person with lymphedema should work with the certified lymphedema therapist or qualified lymphedema specialist provider (MD, NP) to adapt their remedial exercises into their fitness and weight management program at the time they are moving from Phase I (treatment phase) to Phase II (self-management).•

Individuals with or at risk for lymphedema can and should perform aerobic and resistance exercise in a safe manner.•

The individual with or at risk for lymphedema may benefit from working with an Exercise Physiologist and/or Personal Trainer. The person with lymphedema should inquire if the trainer or exercise physiologist has experience working with lymphedema and other medical conditions. Certification for personal trainers varies. Patients who are unsure of about the qualifications of a community exercise practitioner should work with a certified lymphedema therapist or health care provider to assist them in finding a community exercise program or professional.•

In general, individuals with a confirmed diagnosis of lymphedema should utilize compression garments or compression bandages during exercise.•

Individuals at risk for lymphedema may or may not utilize compression garments during exercise; this is an individual decision to be made with guidance from a care provider and/or therapist based on risk, activity, and conditioning level.•

Individuals at risk for lymphedema will benefit from most forms of exercise tailored to their individual needs.

•

Individuals at risk for or with a confirmed diagnosis of lymphedema should avoid repetitive overuse of the affected part. Sudden increase in an individual’s usual exercise duration or intensity may trigger or worsen lymphedema. It is likely that a program of slowly progressive exercise for the affected body part will decrease the potential for common daily activities to result in overuse.•

Exercise should be started gradually, increased cautiously, and stopped for pain, increased swelling, or discomfort.•

The risks of exercise for the individual with or at risk for lymphedema must be balanced against the risks of deconditioning that undoubtedly results from not exercising. A deconditioned body part with or at risk for lymphedema can do progressively less without risk of overuse. As a result, exercise is recommended for those with and at risk for lymphedema.

•

The NLN cannot specifically determine the safety of exercise for any individual. The guidelines in this Position Paper provide general principles, but do not substitute for medical evaluation and recommendations from a health care professional. It is the responsibility of all individuals with or at risk for lymphedema to consult with their health care provider regarding their own specific needs.

References:

1. Tidhar D, Katz-Leurer M. Aqua lymphatic therapy in women who suffer from breast cancer treatment related lymphedema: a randomized controlled study. Support Care Cancer. 2010;18(3):383-392.

2.Moseley AL, Piller NB, Carati CJ. The effect of gentle arm exercise and deep breathing on secondary arm lymphedema.Lymphol. 2005;38(3):136-145.

3.Boris M, Weindorf S, Lasinski B, Boris G. Lymphedema reduction by noninvasive complex lymphedema therapy. Oncol (Williston Park). 1994;8(9):95-106; discussion 109-110.

4.Földi E, Földi M, Weissleder H. Conservative treatment of lymphoedema of the limbs. Angiol. 1985;36(3):171-180.

5.Földi M, Földi E, eds-in-chief. Foldi’s Textbook of Lymphology for Physicians and Lymphedema Therapists, 2nd ed. Munchen, Germany:Urban & Fischer; 2006.

6.Bergmann A, Mendes VV, de Almeida Dias R, do Amaral E Silva B, da Costa Leite Ferreira MG, Fabro EA.

Incidence and risk factors for axillary web syndrome after breast cancer surgery [published online ahead of print October 17, 2011].

Breast Cancer Res Treat. doi:10.1007/s10549-011-1805-7.

7.Fourie W, Rob KA. Physiotherapy management of axillary web syndrome following breast cancer treatment: discussing the use of soft tissue techniques.

Physiotherapy. 2009;95(4):314-320.

NLN • 116 New Montgomery Street, Suite 235 • San Francisco, CA 94105

Tel: 415-908-3681 • Fax: 415-908-3813

Infoline: 1-800-541-3259 • Email: nln@lymphnet.org •

Online: www.lymphnet.org

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Several years ago, I called Harrison Medical Center and asked if non-cancer patients with lymphedema could attend their support group meetings. At that time, it was limited to cancer patients.

Yesterday I called the following number to be certain it was still up to date. It is and the closest Lymphedema Support Group I know about.

If anyone knows of more, let me know – I can post it here.

Kitsap County Closest Support Group

Northwest Lymphedema Center

Kent, WA (24.11 miles * Meeting times: Date varies Phone: (206) 575-7775

Tub’etts!

I’d like to be part of a support group of fatties who NEED to lose weight for their health’s sake – with or without current medical issues. No dues – a scale and occasionally health professionals willing to talk to us – to educate us – to motivate us – guest speakers.

I have been told that I’m not a good candidate for bariatric surgery…so, before I push that particular button – is there anyone beside me, who wants to be part of an obese/tubby support group to work together for weight loss and good health?

To lose weight through good nutrition and exercise is my goal.

We are dying of too much fat, fellow Tubby Ones.

Will you join me in our battle to shed the fat and live healthy? Let me know…

Thanks for reading… Sharon O’Hara familien1@comcast.net

Kitsap County Library System has educational Lymphedema books for the layperson – just ask.

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February Heart Month – 911 – CK Medics and Me

Sharon O'Hara

February is Heart Month…. And I called 911 for help.

I called 911 for myself early morning a couple of Saturdays ago. I thought I was having a heart attack. I’d migrated from bed to sit right here in this chair in what is loosely called my ‘office’ next to my computer and a wall phone and waited until the pain in my throat and down into my chest subsided. Trouble is it got worse and tighter. The pain exploded in my throat and chest with every cough. Pursed lip breathing didn’t seem to help. My airway felt like it was closing.

I dialed 911 and told them how to get where I was. Afterward, still conscious, I called the Old Guy and told him company was coming.

I remember the relief when the paramedics put a C Pap mask on me and I could breathe easier – most comfortable mask I’ve ever had on… and remember the tough time they had getting me out of here –too many steps – to the unit parked in the driveway.

Thank you CK 911 responders! You were efficient and lifesaving…same with Harrison when you got me there. I appreciate the professional help, but especially those really special nurses and staff who understood that I have to maintain whatever degree of independence I have.

The Progressive Care Unit was a new area for me with – again – outstanding care. Without exception, they helped me maintain my independence even though it took longer. From the cheery “Darlin’” nurse to the incredibly kind assistants who make things work well for patients to the MD’s, Barbora Volovarova, (Attending) and Dr. Irina Case –to the well-done discharge RN, Debra Clough Russell and to the cheery Rhonda who wheeled me on out the front door to await the Old Guy bringing the gas guzzler.

The diagnosis was Bronchitis and the pain was pleurisy – the exact diagnosis the Norwegian doctor gave when I got sick in Norway in 1997. The prescribed meds in Norway 1997 allowed me to finish a tight schedule there and get me home.

Shortly after getting home in 1997 and running out of the medications, I was in Harrison and life changed forever. I stopped a 40 year smoking habit and learned the real meaning of the word “addiction” as I fought against the sudden gut wrenching cravings to smoke that continued over the following two years and occasional cravings to a lesser degree, even beyond.

I was scheduled for a stress test at Harrison, but I opted out after the tech helped me do a perfect first scan and we had several delays. The cardiologist asked about my throat and I told him the pain was still there and he kindly suggested that it probably wasn’t my heart but that the stress test would give a good base – I already have Right Heart Failure.

What I didn’t think to mention is that with all the sitting my legs, Restless Leg Syndrome (RLS) began acting up and I doubt I could have held them still for the second scan. The Mirapex I take for RLS doesn’t work like it used to. The stress effort would have been wasted without a good second scan. They planned to do the chemical stress test since it seemed unlikely I could do a treadmill testing. Too bad they don’t do water stress testing where they can get the heart pumping hard as they want without the external problems popping up – such as RLS.

The bottom line for me about Harrison is that they do not treat their patients all alike – they help each patient maintain what they are able to do and encourage that independence. For that, they are unique and a special place for patients like me fighting to maintain strength even as we are there for medical help.

I missed that Saturday’s swim session with Coach Marilyn but her lessons stayed with me in that I was able to swing both legs up on the bed and gurneys using my new found core strength and beginning muscle protection for my left hip. And we were back on track for the following Monday hour session.

I’m including a scan of a great morning tool Harrison gave me on discharge to keep track of such things as heart, weight to catch a heart attack before it happens. I’ve added a blood/oxygen check (Nonin) column and check the time too.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002347

I use the following sheet every morning to keep track of what is going on and will take it to my next doctor appointment.

The single one thing I will change on the sheets I see every day is to change the “Heart Failure Log” to Heart HEALTH Log.

As a patient, I do not want to see “Failure” before me every morning. Heart HEALTH Log is more accurate.

More later…. Sharon O’Hara

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Indoor Polution Beat Smoker Caused COPD in India Study

Sharon O'Hara

Greeting! Indoor pollution (Outdoor pollution too!) kills and the recent study out of India shows that “At least 93 per cent of those who had COPD were nonsmokers,” says Dr Sundeep Salvi, coordinator of the Chest Research Foundation (CRF).

Out of 3,000 people randomly selected for the study, 210 suffered from COPD.

Chest Research Foundation in collaboration with the KEM Hospital, Pune, and the Imperial College, London, UK, conducted one of the largest COPD prevalence studies in a span of two and a half years and released the data on the eve of World COPD Day on November 17.

You don’t have to be a smoker to suffer from Chronic Obstructive Pulmonary Disease (COPD). Indoor air pollution is enough for one to contract the infection, says the first-of-its-kind study conducted at 22 villages of Pune.

Out of 3,000 people randomly selected for the study, 210 suffered from COPD. “At least 93 per cent of those who had COPD were non smokers,” says Dr Sundeep Salvi, coordinator of the Chest Research Foundation (CRF).

Dr Sundeep Salvi from CRF, Dr Sanjay Juvekar from KEM Hospital and Dr Peter Barnes from UK spearheaded the study. Salvi said the country requires a national COPD control programme.

The study used a standardised respiratory health questionnaire and spirometry (lung function test that diagnoses COPD). The prevalence of COPD was found to be 6.9% (5.6% amongst females and 8% amongst males).

Among those identified to have COPD, only 7% were smokers and 93% were never smokers, indicating that smoking is clearly not the most important risk factor for COPD in India. More importantly, 23% of the COPDs occurred in age group less than 40 years, which has not been reported earlier, says Salvi.

It has always been believed that COPD starts occurring after 40 years and above in people who have smoked for over 15-20 years. But in India, indoor air pollution seems to be the most important cause so the disease occurs in earlier age groups as well because of exposures from childhood, he explained.

According to a report published by the Maharashtra State Health Resource Centre in March 2010 that examined the top 10 causes of death in Maharashtra, COPD stood out as the number one cause of death. More than 5,50,000 people die due to COPD in India and the country needs a National COPD Control Programme if the numbers of deaths and suffering caused by COPD has to be reduced, he added.

http://www.indianexpress.com/news/indoor-air-pollution-behind-copd-not-smoking-study/712430/

A COPD wet ride to Silverdale and back…

Norway’s Sigrid Ekran – Rookie of the Year – 2007 Iditarod… Anchorage, Alaska
COPD and Rosemaling go everywhere.

Hope to see you all later today – 1:30 in the Rose Room, Silverdale Harrison for World COPD Day 2010!

More later… Sharon O’Hara

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COPD, Professor William MacNee Clicked for this COPDer

Sharon O'Hara

FLASH

Ref: Early detection public COPD Spirometry, World Spirometry Day and World COPD Day

I called our health district yesterday and spoke with Cris Craig, Kitsap County Health District Public Information Officer. She couldn’t answer my question about the health department offering free spirometry to the public. She did say in a cheerful voice she would call in about three weeks with a response. THAT is good news and she didn’t ask what COPD was – even better.. A hopeful sign and may mean that Spirometry will be offered and made available to the public. I believe in miracles.

Professor William MacNee and the Royal Infirmary of Edinburgh Scotland, UK website has superb graphics – the best explanation of COPD (Chronic Obstructive Pulmonary Disease) I’ve seen in one place. His ‘The Latest Trends in COPD Research’ graphically shows why early detection Spirometry is important.

For many of us COPD is an ongoing magnet for other disease, including some really difficult stuff. COPD and lung disease can be the beginning of a long list of personal medical challenges expanding the patient’s medical disease library. Whatever needs to happen to avoid COPD in your life get tested for early detection and do whatever is needed to get it done.

My son, Al and I were visiting family in Northern Norway in1997. I didn’t know then my 40 year smoking habit was almost over. And so was I. I was beginning to feel sick. The day after this picture was taken, I had to see a Norwegian doctor. She examined me and prescribed medications for Pleurisy and Chronic Bronchitis. The medication worked, the pain receded and we were back on schedule. Within a couple weeks after this picture was taken and five days after returning home, I was in the hospital.

Life as I’d known it was over.

COPD is a friendly disease. For me, once Emphysema (COPD) got settled in my lungs and got comfortable, she began to invite her Other Stuff Disease buddies for a sleep over. Trouble is, they stayed over and didn’t go home. They joined COPD trying to play Havoc with my health and life.

Following COPD was an open lung biopsy and Sarcoidosis – Sleep Apnea – RLS – Psoriasis – Venous Stasis Dermatitis – Cellulitis – High Blood Pressure – Lymphedema – and bone-on-bone Arthritis, left hip followed – to name a few.

Early detection Spirometry can stop COPD early – before it’s too late. Ask your doctor.

This is where it gets tricky. Health care is a huge problem. COPD generally takes twenty years developing before a person mentions symptoms to the doctor and by then about fifty percent of the lungs are destroyed….leading the patient to a long slow smother and the taxpayer choking form the cost.

Offering free Spirometry testing for early COPD detection gives the individual warning. If the problem is not genetic, it can be turned around. Telling isn’t enough – SHOW people what COPD can do to them and their families. Let them meet willing patients who can show and tell… a real reality show.

Exercise works and muscle utilizes oxygen better than flab. We can breathe better and move easier. Exercise and understanding COPD gives us a quality of life back – to be the best we can be. The recumbent trike takes us places we couldn’t easily go without one – fun stuff, building muscle at the same time. We must keep moving … ask your doctor.

I did not qualify for lung reduction surgery or I would have opted to get it ..not enough good lung and I heard rave reviews from patients who had had one. One COPDer told me the lung reduction surgery restored his life back to ‘normal’ and lasted about five years before time and COPD danced ahead. Ask your doctor about it.

Pursed lip breathing training is a must for COPDers – it keeps us out of the panic mode and out of the hospital. It has for me…and I tested it with my oximeter.Talk to your doctor about pulmonary rehab. It is never too late to get better through our own efforts…what does your doctor say?

Photo taken by the photographer who traveled with the Trek. This photo shows me on my recumbent trike flying the COPD/EFFORTS safety flag and pedaling over Deception Pass with the American Lung Association of Washington’s three day bike ride – the Trek Tri Island.

It was the first time I had been away overnight from my house in seven years – since Harrison Hospital in 1997. A slow trike rider, it is thanks to the wonderful volunteers who hop scotched me and my trike ahead of the other 200 plus bike riders time after time that enabled me to pedal 50 miles of the 137 mile trip. I felt free again.

Key motivators were the Shortness of Breath Study at the University of Washington Medical Center that I was lucky enough to qualify for and my online support group, EFFORTS. Proof to me that educating COPD patients work.

Stroke patient, Mary Griffith and her butterfly and gold star fingernails caught my eye the other day – more about Mary and husband, Doug later)

Kitsap County Health District … Will you be the first county health district in the nation to see the fiscal benefit of early detection Spirometry to protect citizens of ALL ethnic background.

The Kitsap County taxpayer and COPD future could rest in your hands.

Thank you Professor William MacNee for a great COPD informational website and allowing me to use it here.

http://www.efanet.org/activities/documents/WMcNeeLatestTrendsinCOPDResearch. pdf

More later… Sharon O’Hara

Part 4 of 4

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Sarcoidosis People Fight to Overcome

Sharon O'Hara

Norway knows as much about Sarcoidosis as the rest of the world:
Sarkoidose, et mysterium!
(Sarcoidosis, a mystery!)

I continued my Google search for up-to-date Sarcoid support group websites.

What is it about Kentucky?
In addition to the Kentucky Derby in Lexington, its world-class horses and breeding farms and its world class Kentucky Horse Park…Kentucky has a finite ‘something’ that draws me back to visit from time to time.
My sister might have something to do with it – she has lived in Kentucky over a half-century.

I was checking out viable websites for Sarcoid support groups to give you and ‘something’ prompted me to stop at the Kentucky listing and call the listed number. An excellent example of patient helping patient for support answered the phone.

• KENTUCKY
Strength for Sarcoid Sufferers (SSS)
Mailing Address: 106 Cedar Stream Drive
Paris, KY 40361
Contact: Peggy Baldridge
(859) 340-4210
pbaldridge@me.com

Peggy Baldridge is a family minister and commutes to Lexington, KY from her home in Paris, KY. She has 3 daughters, 13, 15 and 17 – too young in 1999 to understand the medical changes and challenges their mom fought. An early on six-month Prednisone treatment course dealt its own whammy…and she had side effects from steroid use.

Trouble is steroid treatment is still the only form of treatment for Sarcoidosis, independently co-discovered in the early 1900’s by a doctor in Oslo, Norway and a doctor in England.

The cause is yet unknown but most people who get Sarcoid never know they have it. It comes and goes.

It left the fibrosis and granulomas in my lungs but Peggy lives with and fights against the ongoing active Sarcoid invasion moving its destruction inside her body.

Peggy’s Sarcoid has shifted over the years, currently in the form of nodules in her skull, behind her forehead – contributing to a twelve-year headache. The elusive disease has now apparently invaded the lachrymal gland behind her eyes and may have advanced to include Sarcoid Arthritis.

Peggy is among the lucky ones – she found a good Sarcoid doctor at the University of Cincinnati and no doubt she adds greatly to current medical knowledge.

Peggy is currently the only member of her support group, perhaps because Sarcoid is elusive and easily overlooked by physicians.
I hope Peggy will chime in here, correct any misstatements on my part, and tell the rest of her story that might help other folks recognize symptoms in themselves and her strength comes from a close relationship with God.
Peggy, will you add to this?
•
WASHINGTON
Sarcoidoidosis Networking Association (SNA)
5302 S Sheridan Ave.
Tacoma, WA 98408-3535
Contact: Lynn Short
(253) 826-7737 PST
lynn@sarcoidosisnetwork.org or
sarcoidinformation@sarcoidosisnetwork.org
www.sarcoidosisnetwork.org

http://www.sarcoidosisonlinesites.com/start%20a%20support%20group.htm
Blessings, Sharon O’Hara

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