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Starting _ Maintaining a HCV Support Group - HCV Advocate

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Starting _ Maintaining a HCV Support Group - HCV Advocate Powered By Docstoc
					      Life Management During HCV Treatment



                              ALAN FRANCISCUS
               EXECUTIVE DIRECTOR, HEPATITIS C SUPPORT PROJECT

                       EDITOR-IN-CHIEF, HCV ADVOCATE WEBSITE
                              WWW.HCVADVOCATE.ORG

                       EDITOR-IN-CHIEF, HCV ADVOCATE WEBSITE
                              WWW.HBVADVOCATE.ORG

                           JOIN ME ON TWITTER – HCVADVOCATE
                                    & FACEBOOK – HCVADVOCATE



www.hcvadvocate.org - August 2010
                                    GOAL




     The goal of this presentation is to provide

       information and advocacy for people who

                    are undergoing HCV treatment



www.hcvadvocate.org - August 2010
                       Medical Care and Support

      The two most important components of life
      management on HCV treatment are medical
     support and support from all areas of your life

      The HCV treatment is different for everyone

                                    One day at a time!



www.hcvadvocate.org - August 2010
                                    Introduction
   •   Key Points:
       •   HCV Treatment

       •   Preparing for Treatment

       •   General Health Tips

       •   Side Effect Management

       •   After Treatment



www.hcvadvocate.org - August 2010
                               HCV Treatment
•GOALS OF TREATMENT:
  •   Clear virus out of the body
  •   Reduce inflammation & scarring
  •   Slow disease progression,
  •   Improve symptoms and quality of life
  •   To put HCV behind them and move on with their lives

•SUSTAINED VIROLOGICAL RESPONSE (SVR)
  •   HCV is undetectable during and 6 months following HCV medical
      therapy
       • 5 year follow-up – 99% still HCV RNA undetectable

www.hcvadvocate.org - August 2010
                                    HCV Treatment




www.hcvadvocate.org - August 2010
        Current Treatment: Standard Protocol

   Pegylated (injected once a week)

   Ribavirin (pill or capsule – oral twice a day)

       Genotype 1 –48 weeks
         Pegylated injected once a week;
         Ribavirin 1,000/1,400 mg/day

       Genotypes 2, 3 –24 weeks
         Pegylated injected once a week;
         Ribavirin 800 mg/day

www.hcvadvocate.org - August 2010
               Current Treatment: Side-effects

Interferon                          Ribavirin

                                     Anemia, rash, dry cough



                                    Black box warning:
                                     birth defects

                                       Blood Deficiencies
                                         Low white blood cells

                                         Low platelets

                                         Low red blood cells

www.hcvadvocate.org - August 2010
              Complementary Medicine (CAM)

 National Institutes of Health CAM Report*:

      38.3% of adults use some from of CAM – significant increases
       since 2002

      CAM natural products include fish oil/omega 3’s, glucosamine,
       Echinacea, and flaxseed.

      If herbs or supplements are used – report to medical
       provider

      CAM therapies include acupuncture/acupressure, deep
       breathing exercises, meditation, massage therapy, and yoga

      *Released 12/2008
www.hcvadvocate.org - August 2010
                Preparing For Treatment

                 PREPARING FOR
                  TREATMENT IS
                HALF THE BATTLE!


www.hcvadvocate.org - August 2010
           Preparing for Treatment: Financial



 Financial Considerations


    Employment


    Insurance


    Workplace



www.hcvadvocate.org - August 2010
      Preparing for Treatment: Medical Tests

 Pregnancy Test – effective contraception


 Viral Load


 Genotype


 Baseline CBC Tests


 Biopsy?

www.hcvadvocate.org - August 2010
      Preparing for Treatment: Medical Tests

 Eye Exam


 Medical and Dental Procedures


 Immunizations
   Hepatitis A, hepatitis B, Pneumonia, etc….




www.hcvadvocate.org - August 2010
                      Preparing for
              Treatment: Pegylated / Ribavirin

 HCV Medications


      Pegylated interferon – self-injection first shot

      Storage of pegylated interferon at home and traveling

      Disposal of needles

      Ribavirin taken with food

      Pill containers / reminders

www.hcvadvocate.org - August 2010
       Preparing for Treatment: Support


      Develop a support network:

          Family, friends, loved ones, co-workers

          Support Groups

              ‘Live’

              On-line




www.hcvadvocate.org - August 2010
                        General Health Tips

                    THE FOLLOWING SLIDES
                      INCLUDE GENERAL
                    INFORMATION TO HELP
                   PEOPLE REMAIN HEALTHY
                   WHILE ON HCV TREATMENT



www.hcvadvocate.org - August 2010
                                    Food Safety

     •Advise        clients to avoid raw & undercooked shellfish
           •HAV     / Vibrio vulnificus


     •Food   hygiene is important to stay healthy
           •www.foodsafety.gov




www.hcvadvocate.org - August 2010
                            Adequate Fluid Intake

 Fluid intake is important for:
    Organs,            skin, digestive system, flushes toxins,
       etc.

 Drink about eight- 8 oz glasses of water a day


 Most people do not drink enough water


 Yes, you can drink too much water!

www.hcvadvocate.org - August 2010
                                    Nutrition

 Nutrition is important for general health and keeping the liver healthy


 Start at www.mypyramid.gov


 Tips for clients:
      Strive for a diet low in salt, saturated fats, sugar and cholesterol,
      Choose multigrain & high fiber food
      Eat generous amounts of fresh fruits and vegetables


 Avoid acidic or overly spicy food


 Think of food as medicine
www.hcvadvocate.org - August 2010
                                    SUPPLEMENTS


 Client should avoid megavitamins and supplements
      Vitamin A and vitamin D should be avoided in high doses

 General recommendations:
      Vitamin supplement (daily requirements with no iron)

 Client should always check in with a medical provider




www.hcvadvocate.org - August 2010
                                    Sleep


 Many people with hepatitis C have sleep problems especially while on
   HCV treatment

 Most people need 7 to 9 hours of sleep
      Some people with hepatitis C may need more sleep especially while
       on therapy

 Seek professional help if insomnia is persistent




www.hcvadvocate.org - August 2010
                               Stress Management

 Stress can break down the immune system


 Stress can make it difficult to stay on treatment


 Relieve stress with:
      Exercise
      Meditation
      Prayer
      Yoga
      Qi Gong


 Help with stress: express yourself!

www.hcvadvocate.org - August 2010
                                    Physical Fitness


• Important for overall physical and mental health especially on
   treatment
   • Especially helpful for fatigue and depression – build in rest periods

   • Everyone should check in with a medical provider to make sure it is
      safe to exercise

• It’s not an all or nothing strategy

• More information and other strategies to become physically active at:
   •    www.cdc.gov/physicalactivity




www.hcvadvocate.org - August 2010
                                    Attitude

• People with hepatitis C should strive to keep a
   Positive but realistic attitude. Advice:
   •   Don’t think things are worse or better than they are

   •   Get the right information

   •   Stay in the present :

       •   Don’t dwell on the past or imagine a future 0f sickness

   •   Visualize health instead of illness

   •   Get support and give support to others



www.hcvadvocate.org - August 2010
                             Attitude: Appearance


      Stay groomed – when you look good – you generally feel better

      Develop routine – example:
          morning shower, shaving, make-up, etc.


      Dress in comfortable clothing

      Brush and floss teeth daily




www.hcvadvocate.org - August 2010
                 Side Effect Management

   THE MOST IMPORTANT STRATEGY TO
   MANAGE HCV TREATMENT-RELATED
   SIDE EFFECTS IS WORKING CLOSELY
  WITH MEDICAL PROVIDER BEFORE THE
      SIDE EFFECTS BECOME WORSE



www.hcvadvocate.org - August 2010
        URGENT ATTENTION NEEDED:

 Severe depression
 Thoughts of harming yourself or others
 Persistent or very high fever
 Blurry or loss of vision
 Difficulty breathing
 Bloody diarrhea
 Unusual bleeding or bruising
 Severe stomach or back pain
 You or your female partner becomes pregnant

www.hcvadvocate.org - August 2010
                                    Fatigue

 Exercise
 Healthy diet
 Water
 Stress reduction
 Balance activity with rest
 Take short naps (no more than 20 minutes)
 Rub earlobes for >7 seconds
 This too shall pass

www.hcvadvocate.org - August 2010
                            Muscle and Joint Pain


 Advice from medical provider on OTC and

   prescription pain killers

 Gentle stretching

 Apply heat or ice packs

 Massage

 Warm baths


www.hcvadvocate.org - August 2010
                                    Nausea


 Avoid foods or odors that trigger nausea

 Avoid spicy, greasy, and deep-fried foods

 Eat small amounts of food every few hours

 Drink and eat slowly

 Advice from medical provider on OTC

 Peppermint, chamomile, ginger

 Acupressure/acupuncture
www.hcvadvocate.org - August 2010
                                    Diarrhea

 Drink plenty of fluids –water, weak tea, etc.

 Eat small frequent meals

 Avoid spicy, fried or greasy foods

 Avoid very hot or very cold foods

 Reduce consumption of caffeinated drinks and

   tobacco

 BRATT diet–bananas, rice, applesauce, toast, & tea
www.hcvadvocate.org - August 2010
                                    Headaches


 Limit caffeine – coffee, teas, and soda

 Drink lots of water and other clear liquids

 Avoid loud noises, bright lights and strong smells

 Exercise

 Advice from medical provider on OTC




www.hcvadvocate.org - August 2010
                                    Dry Skin


 Avoid soap – use non-soap cleanser substitute

 Drink plenty of water

 Apply moisturizer frequently especially after shower

   or bath

 Avoid too hot or too cold showers or baths

 Oatmeal baths

 Protect the skin from the sun
www.hcvadvocate.org - August 2010
                                    Rash


 Ribavirin rash – common

 Avoid scratching – try rubbing, vibration or applying

   pressure

 Apply moisturizer frequently

 Take oatmeal baths

 Wear loose fitting clothes

 Get medical provider advice
www.hcvadvocate.org - August 2010
                                    Insomnia


 One of the most common side effects

 Get medical advice

 Use bed for sleep and sex only

 Develop a routine

 Avoid any stimulates before bedtime—caffeine,

   exercise, getting too stirred up, food

 Eject snoring partner and pets
www.hcvadvocate.org - August 2010
                                    Weight Loss


 Treat food as medicine

 Consult with a dietician

 Try nutritional supplements, canned formulas,

   protein powders, instant breakfast drinks, power
   bars and pudding




www.hcvadvocate.org - August 2010
                                    Hair Loss

 Generally not bodywide – hair can shed, become
   brittle, texture changes

 Avoid chemicals and do not wash too frequently


 A short, layered haircut makes hair look fuller


 Use hair products—conditioners, sunscreen


 Avoid hair dryer, curling irons and teasing
www.hcvadvocate.org - August 2010
                                    Libido Changes

 Decreased interest in sex

 Women: vaginal dryness
   Use water based lubricants


 Men: difficulty with maintaining an erection
   Erectile dysfunction medications


 Communicate with partner

 Temporary – will return to normal after therapy

*don’t forget birth control measures
www.hcvadvocate.org - August 2010
                                    Brain Fog

 Calendar/ Daily Planner for taking PEG
 Pill containers for ribavirin
 Exercise
 Sleep
 Do puzzles, crosswords, play memory games
 Put everything in the same place – visualize
 Use Post-it notes
 Laugh!
www.hcvadvocate.org - August 2010
                            Anxiety & Depression

 Talk with medical provider before, during and after
   treatment – antidepressants
 Join a support group
 Reduce stress - try meditation, prayer, deep
   breathing
 Avoid stimulants – tobacco, caffeine
 Balance activity with rest
 Find activities that you enjoy

www.hcvadvocate.org - August 2010
                              After Treatment

  •SIDE EFFECTS DECREASE OVER TIME


  •IF TAKING ANTI-DEPRESSANTS – STAY THE COURSE


  •EMOTIONAL ISSUES:


     •   Achieving an SVR

     •   Not achieving an SVR



www.hcvadvocate.org - August 2010
                          Medical Care & Support

   The two most important components of life
   management on HCV Treatment are medical
    support and support from all areas of your
                      life

                                    One day at a time!



www.hcvadvocate.org - August 2010
                            On-line Resource

       The HCV Advocate Web site has more information
       on the topics discussed in this presentation :
                         www.hcvadvocate.org

             The HBV Advocate We site has information on
                            hepatitis B:
                         www.hbvadvocate.org
www.hcvadvocate.org - August 2010

				
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