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Living Well Planning for the Future

Living Well Planning for the Future. Interstitial Lung Disease. Sally McLaughlin, RN, MSN UCSF Interstitial Lung Disease Program March 7, 2009. LYMPHANGIOLEIOMYOMATOSIS (LAM) HYPERSENSITIVITY PNEUMONITIS (HP) IDIOPATHIC PULMONARY FIBROSIS (IPF)

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Living Well Planning for the Future

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  1. Living Well Planning for the Future Interstitial Lung Disease Sally McLaughlin, RN, MSN UCSF Interstitial Lung Disease Program March 7, 2009

  2. LYMPHANGIOLEIOMYOMATOSIS (LAM) HYPERSENSITIVITY PNEUMONITIS (HP) IDIOPATHIC PULMONARY FIBROSIS (IPF) NON-SPECIFIC INTERSTITIAL PNEUMONITIS (NSIP) BRONCHIOLITIS OBLITERANS ORGANIZING PNEUMONIA (BOOP/COP) CONNECTIVE TISSUE-RELATED INTERSTITIAL LUNG DISEASE (CT-ILD) RESPIRATORY BRONCHIOLITIS INTERSTITIAL LUNG DISEASE (RB-ILD)

  3. Longest Word in the English Language Pneumonoultramicroscopicsilicovolcanoconiosis “A lung disease caused by the inhalation of very fine silica dust found in volcanoes”

  4. Worth 68 points in Scrabble!! ☺

  5. Living Well with ILD Keep Educating Yourself Prevent Infection Stop Smoking Get in Shape / Stay in Shape Keep doing the things you LOVE to do!!

  6. Living Well with ILD Keep Educating Yourself your specific ILD your co-morbidities your symptoms

  7. Interstitial Lung Disease • Exposure-related: • Hypersensitivity • pneumonitis • Pneumoconioses • Drug reaction Idiopathic interstitial pneumonia (IIP) • Connective tissue disease: • Scleroderma • Rheum. arthritis • Sjogrens • UCTD Sarcoidosis • Other: • - Vasculitis/Diffuse alveolar hemorrhage (DAH) • - Langherhans cell histiocytosis (LCH) • - Lymphagioleiomyomatosis (LAM) • Pulmonary alveolar proteinosis (PAP) • Eosinophilic pneumonias • Neurofibromatosis • Inherited disorders • Chronic aspiration • Inflammatory bowel disease Idiopathic pulmonary fibrosis (IPF) Respiratory bronchiolitis interstitial lung dis. (RBILD) Desquamative interstitial pneumonia (DIP) Cryptogenic organizing pneumonia (COP/BOOP) Acute interstitial pneumonia (AIP) Lymphocytic interstitial pneumonia (LIP) Nonspecific interstitial pneumonia (NSIP)

  8. Living Well with ILD Prevent infection: Flu vaccine every year Pneumovax

  9. Living Well with ILD Stop Smoking Including second-hand smoking

  10. Living Well with ILD Get into Shape/Stay in Shape Exercise Nutrition

  11. Healthy Eating For People with Chronic Lung Disease

  12. General Nutrition Guidelines • Achieve and maintain a healthy Body Mass Index (BMI of 20 – 30) • High protein • Small, frequent, nutritious meals • Larger meals earlier in the day • Limit sodium • Avoid foods that cause gas and bloating • Wear your oxygen during meals • Limit food that increase acid in the stomach

  13. Tips for Gaining Weight High protein, high calorie diet Avoid drinking lots of fluids with meals Take a multivitamin/mineral supplement if you are not getting enough calorie Take a high calorie nutritional supplement Ensure Boost

  14. Tips for Losing Weight Eat high protein, low carbohydrate diet Watch portion size www.nhlbi.nih.gov – Obesity Education Initiative Exercise regularly Seek support

  15. A Word About Prednisone Fluid Retention Low sodium High potassium Increased calorie intake due to increased appetite Eat small, frequent meals of high nutritional value Try low carbohydrate/high protein diet Carbohydrates – fresh fruits and vegetables Decreased physical activity Daily exercise program Eat main meal early in the day Wear your oxygen when you exercise

  16. Living Well with ILD Keep doing the things you love to do!

  17. Choosing the Right Oxygen Equipment How much oxygen do you need to keep your saturations 90% or more at all times: at rest with activity at night Your lifestyle YOU

  18. Choosing the Right Oxygen Equipment Your lifestyle Active or sedentary? How long do you stay out? What do you do/where do you go? Do you travel? How far? Altitude? Home size? Layout?

  19. Choosing the Right Oxygen Equipment YOU Strength/endurance Dexterity Nose-breather? Mouth-breather? Self conscious?

  20. Choosing the Right Oxygen Equipment Liquid vs. compressed gas system Home fill system Portable oxygen concentrator Concentrator vs. high flow concentrator/reservoir Pulsed vs. continuous flow settings

  21. Choosing the Right Oxygen Equipment Accessories for high flow & comfort oximiser oxyarm or oxymask humidifier Accessories for carrying backpack shoulder strap cart belt pack

  22. Traveling with Oxygen Travel programs Altitude simulation testing Portable oxygen concentrators Great websites: www.portableoxygen.org www.homeoxygen.org www.emphysema.net

  23. Planning for the Future Get support Get early lung transplant evaluation Advanced care Get involved/help others

  24. Planning for the Future Get support Financial/medication support Psychosocial support Caregiver support Other

  25. Planning for the Future Get Early Lung Transplant Eval Time to learn about transplant Time to prepare Time to get into shape Time to complete the tests Time to make realistic goals & expectations

  26. Planning for the Future Advanced Care Planning Advanced Directives Living Will Medical Power of Attorney Home Care and Hospice

  27. Planning for the Future Get involved/help others Foundations Support group www.clincialtrials.gov

  28. Interstitial Lung Disease: You are loved! You are needed! You are not alone!

  29. Thank you !

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