Catherine Holley, RN Operating Room Nurse Massachusetts General Hospital

Transcription

1 Operating Room Nurse Massachusetts General Hospital March 15, 2017

2 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

3 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

4 Lymphatic System Tonsils cluster of nodes Thymus WBC s recognize foreign invaders Spleen lymphocytes antibodies Lymph nodes Lymph vessels Thoracic Duct R Lymphatic Duct Bone Marrow RBC, PLT, & infection fighting cells

5 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

6 What is Lymph Fluid? 96% water protein molecules cell debris bacteria waste products

7 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!

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9 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.

10 Types of Lymphedema Primary >40 rare disorders are assoc with primary lymphedema Congenital / hereditary Absent or abnormal lymphatics Birth: Milroy s disease (auto-dom) Teens: lymphedema praecox Adults: lymphedema tarda Secondary 22% non-cancer related 68% cases are cancer related Damage/injury to lymph system Surgery any surgery! Lymph node dissection - cancer Radiation therapy Burns / Trauma Infection

11 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

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

13 National Cancer Institute 2015 Lymphedema is one of the most poorly understood, relatively underestimated, and least researched complications of cancer or its treatment.

14 Incidence of Cancer-Related Secondary Lymphedema Cormier, J. et al 2010 Melanoma 16% Head/Neck 4% Pelvic Dissections 22% Breast with radiation 49% Breast 10-20% Radiation Therapy 31% Gynecology 20% Sarcoma 30% Genitourinary 10% Overall cancer-related incidence is 15.5%

15 Secondary: Surgical Risks ANY Damage to Lymphatic Tissue Scrotum Gynecologic surgery GU surgery Orthopedic procedures Trauma Infection Lymph node dissection Radiation therapy Burns Vascular surgery Tumor resection Venous ligation Venous ligation

16 Stage O Latency, at risk Stages of Lymphedema 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

17 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

18 Lymphedema Treatment Options

19 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.

20 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

21 Four Layers of Bandaging Stockinet Soft roll bandages Foam padding Short stretch bandages

22 CDT: Daily Process

23 Breast Cancer Related incidence as low as 10%, up to 49% with radiation (Cormier, J. et al 2010) Before lymphedema treatment (complete decongestive therapy) 4 weeks after treatment Neglected lymphedema after mastectomy Examples of custom compression to reduce lymph fluid accumulation

24 Head and Neck Cancers : 4% of patients identified with lymphedema (Cormier, J. et al 2010) Mouth Cancer Compression garments 10 weeks after chemo/radiation 7 months after lymphedema therapy

25 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.

26 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.

27 Examples of Custom Compression

28 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

29 CELLULITIS a vicious cycle Chronic, often non-healing wounds Recurrent hospitalizations Antibiotics Limited mobility Out of work Medical costs

30 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.

31 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!

32 LIPEDEMA Chronically progressive disease, almost exclusively in women. Painful fat disorder, 11% women in hips/lower bodies estimated 17 million US / 370 million worldwide

33 Lymphedema vs Lipedema

34 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

35 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!

36 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)