catherine holley, rn operating room nurse massachusetts ... · catherine holley, rn . lipedema ....
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Catherine Holley, RN
Operating Room Nurse Massachusetts General Hospital
March 15, 2017
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
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
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
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
What is Lymph Fluid?
96% water protein molecules cell debris bacteria waste products
Catherine Holley, RN
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!
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.
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
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
Catherine Holley, RN
Review of Node Clusters Major clusters of lymph nodes: Cervical Axillary Inguinal Vertebral Intestinal Pelvic Abdominal
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
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
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
Stages of Lymphedema Stage O • Latency, at risk
Stage I • Pitting • Reversible edema, reduces with
elevation
Stage II • Non-pitting • Irreversible edema • Fibrosis and scarring • Doesn’t improve with elevation
Stage III • Elephantiasis • Hardening of dermis, papillomas
of skin
Catherine Holley, RN
Catherine Holley, RN
Stage III Elephantiasis
Most common cause worldwide: parasite->filariasis • Mosquito infected with parasite travels to the lymph system
and matures, blocking lymph flow • WHO > 120 million affected. Asia/Africa
Catherine Holley, RN
Lymphedema
Treatment Options
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.
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
Four Layers of Bandaging Stockinet Soft roll bandages Foam padding Short stretch bandages
Catherine Holley, RN
Catherine Holley, RN
CDT: Daily Process
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
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
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.”
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.”
Catherine Holley, RN
Examples of Custom Compression
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
CELLULITIS a vicious cycle
Chronic, often non-healing
wounds Recurrent hospitalizations Antibiotics Limited mobility Out of work Medical costs
Catherine Holley, RN
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.
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
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
Lymphedema vs Lipedema
Catherine Holley, RN
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
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
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