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Catherine Holley, RN Operating Room Nurse Massachusetts General Hospital March 15, 2017
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Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Jan 14, 2019

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Page 1: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Catherine Holley, RN

Operating Room Nurse Massachusetts General Hospital

March 15, 2017

Page 2: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Background Nurse 34 years

Operating room RN at Massachusetts General Hospital 1979 – surgery to remove varicose veins right leg

Strong family history of venous insufficiency

1984 – noticed swelling in lower leg

All of my care has been driven by my own

research and advocacy

Catherine Holley, RN

Page 3: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Circulatory System Arteries / Veins

Closed system Circulating system External pump – heart Fairly set volume

Lymphatics Open ended One way No pump, dependent on muscles Capacity can increase up to 10x

Catherine Holley, RN

Page 4: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Lymphatic System

Catherine Holley, RN

Tonsils cluster of nodes

Thymus WBC’s recognize foreign invaders

Spleen lymphocytes antibodies

Bone Marrow RBC, PLT, &

infection fighting cells

Lymph nodes Lymph vessels Thoracic Duct

R Lymphatic Duct

Page 5: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Lymphatic System The Basics

Network of tissues and organs, removing toxins/wastes from body – body’s pool vacuum!

• Body’s immune system / fighting infection

• Lymph flow is dependent on muscle contraction

• Over 3 LITERS of lymph

fluid produced daily

• Over 600 nodes in body

Catherine Holley, RN

Page 6: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

What is Lymph Fluid?

96% water protein molecules cell debris bacteria waste products

Catherine Holley, RN

Page 7: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Catherine Holley, RN

What is Lymphedema?

Swelling that occurs due to injury or impairment of the lymphatic system

Causes: Anything that disrupts the flow of lymph fluid through the vessels and/or the nodes

Compromised removal of water, protein and wastes from tissues. Build up of protein rich fluid!

Page 9: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Catherine Holley, RN

• Up to 10 million Americans, and hundreds of millions worldwide, suffer from lymphedema and lymphatic diseases.

• More people suffer from these

diseases in the United States than suffer from Multiple Sclerosis, Muscular Dystrophy, ALS, Parkinson's disease, and AIDS -- combined.

Page 10: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Types of Lymphedema Primary

>40 rare disorders are assoc with primary lymphedema

Secondary 22% non-cancer related

68% cases are cancer related • Congenital / hereditary • Absent or abnormal lymphatics • Birth: Milroy’s disease (auto-dom) • Teens: lymphedema praecox • Adults: lymphedema tarda

Damage/injury to lymph system • Surgery – any surgery! • Lymph node dissection - cancer • Radiation therapy • Burns / Trauma • Infection

Catherine Holley, RN

Page 11: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Catherine Holley, RN

Important Facts Unclear who will develop lymphedema (LE) Can be immediate but often onset is delayed

1-5 years after insult, or even decades later

No cure. Chronic, life long disease

In US, highest incidence: breast CA surgery with axillary lymph node dissection

> 500,000 Breast Cancer survivors with LE

Page 12: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Catherine Holley, RN

Review of Node Clusters Major clusters of lymph nodes: Cervical Axillary Inguinal Vertebral Intestinal Pelvic Abdominal

Page 13: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

National Cancer Institute 2015 Lymphedema is one of the most poorly

understood, relatively underestimated, and least researched complications of cancer or its treatment.

Catherine Holley, RN

Page 14: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Incidence of Cancer-Related Secondary Lymphedema

Cormier, J. et al 2010

Head/Neck 4%

Genitourinary 10%

Breast 10-20%

Sarcoma 30%

Pelvic Dissections 22%

Melanoma 16%

Gynecology 20%

Breast with radiation 49%

Radiation Therapy 31%

Overall cancer-related incidence is 15.5% Catherine Holley, RN

Page 15: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Secondary: Surgical Risks ANY Damage to Lymphatic Tissue Gynecologic surgery GU surgery Orthopedic procedures Trauma Infection

Lymph node dissection Radiation therapy Burns Vascular surgery Tumor resection Venous ligation

Scrotum

Venous ligation

Catherine Holley, RN

Page 18: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Catherine Holley, RN

Lymphedema

Treatment Options

Page 19: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Catherine Holley, RN

Stage I Treatment

• Biggest hurdle is accurate diagnosis! • Evaluation and education by CLT • Adherence to self-care routine • Manual lymph drainage, as indicated • Compression & Prevention of progression • Pneumatic Compression Pump

• May not be as effective for Stage II and III Pumps do not eliminate the scarring from fibrosis.

Page 20: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Catherine Holley, RN

Stage II or III need for more intensive therapy

Complete Decongestive Therapy (CDT): Intense 4-6 week treatment

Certified Lymphedema Therapist (CLT-LANA) Total 2 hours daily, M-F Includes: manual lymph drainage (MLD) – gentle

massage multi-layer bandaging exercise and skin care

Page 23: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Before lymphedema treatment

(complete decongestive therapy)

4 weeks after treatment

Neglected lymphedema after mastectomy Examples of custom compression to reduce lymph fluid accumulation

Breast Cancer Related incidence as low as 10%, up to 49% with radiation (Cormier, J. et al 2010)

Catherine Holley, RN

Page 24: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Head and Neck Cancers

1983-2008: 4% of patients identified with lymphedema (Cormier, J. et al 2010)

10 weeks after chemo/radiation

7 months after lymphedema

therapy

Mouth Cancer

Compression garments

Catherine Holley, RN

Page 25: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Catherine Holley, RN

After CDT Treatment • Preventing re-accumulation of lymph fluid

• Self Care routine

• Compression Pump

• Daily manual lymph drainage (MLD) • Custom compression garments or multi-layer wrapping

“Vigilance. Every. Single. Day.”

Page 26: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Catherine Holley, RN

After CDT Treatment

• Diaphragmatic breathing • Elevation • Exercise in moderation

• Swimming is great for LE • “Only time I feel normal”

• Skin and nail care • Nutrition

“Vigilance. Every. Single. Day.”

Page 28: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Reality of a Lymphedema Life Constant threat of infection Pain Clothing / shoes Self image / self esteem Isolation / depression Sexuality / body image Cancer diagnosis… No end in sight…. discouragement, frustration, anger Financial impact

Catherine Holley, RN

Page 29: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

CELLULITIS a vicious cycle

Chronic, often non-healing

wounds Recurrent hospitalizations Antibiotics Limited mobility Out of work Medical costs

Catherine Holley, RN

Page 30: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Catherine Holley, RN

Not enough time in the day for manual drainage, then pump, wrap limb, wash & air dry the

bandages. I can’t work anymore. I’m in so much pain. I am mentally

and physically overwhelmed.

Page 31: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Do’s and Don’ts

Always use sunscreen and insect repellant

Use electric razors Protect hands / feet Extreme caution with nail care Moisturize low pH lotion

Eucerin® Cerave® Ceptaphil® Aquaphor®

Avoid use of affected limb for blood pressure, IV’s, finger sticks

Avoid extreme temperatures,

hot tub, saunas Avoid heavy lifting, extreme

exercise

Hydration!

Catherine Holley, RN

Page 32: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

LIPEDEMA Chronically progressive disease, almost exclusively in women.

Painful fat disorder, 11% women in hips/lower bodies estimated 17 million US / 370 million worldwide

Catherine Holley, RN

Page 33: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Lymphedema vs Lipedema

Catherine Holley, RN

Page 34: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Cost of Lymphedema

Treatment / CDT

CLT appointments

Pump $5,000 - $10,000

Multi-layer bandaging

Custom Garments / 6 mos

Loss of work

Impact on family

Catherine Holley, RN

Page 35: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

The Lymphedema Treatment Act (LTA) Medicare does not cover an essential component of CDT, the compression supplies used daily in lymphedema treatment

LTA is a federal bill that aims to improve insurance

coverage for the medically necessary, doctor-prescribed compression supplies that are the cornerstone of lymphedema treatment.

Compression is to lymphedema what medication is to many other diseases – indespensible!

Catherine Holley, RN

Page 36: Catherine Holley, RN Operating Room Nurse Massachusetts ... · Catherine Holley, RN . LIPEDEMA . Chronically progressive disease, almost exclusively in women. Painful fat disorder,

Lymphedema Resource Guide clt-lana.org Lymphology Association of No. America (LANA)

complete listing of certified lymphedema therapists (CLT) Lighthouselymphedema.org Lymphnet.org National Lymphedema Network (NLN) – support group network

Marilyn Westbrook Garment Fund Lymphaticnetwork.org Lymphatic Education & Research Network (LE&RN) lymphaticnetwork.org/living-with-lymphedema/related-organizations/ Lymphedema (group) (Facebook) Lymphedemablog.com Lymphedemapeople.com Lymphedemaproducts.com Lymphedemasurgeon.com Lymphedematreatmentact.org federal bill to improve insurance coverage M.facebook.com/StandingUpToLymphedema/ (Facebook) nwlymphedemacenter.org Northwest Lymphedema Center Staylymphiestrong.com Stepup-speakout.org thelymphielife.com The Lymphedema Running and Fitness Club (Facebook)

Catherine Holley, RN