During this presentation, we will:

• Discuss diet recommendations
  • Ideal weight maintenance
  • Sodium and fluid restriction
  • Diet modifications with warfarin
• Review general recommendations for exercise
• Discuss how to increase your activity

Disclaimers

• Every PAH patient is different.
• Check with your doctor and nurse about their diet and exercise recommendations.
• Listen to your body.

• What is your “ideal” weight?
• Weight requirements for transplant
• Most need to lose weight
• Some need to gain weight
• A few (lucky people!) are at their ideal body weight

• Reduce intake of sugar and refined carbs
• Choose diet soda and eat whole fruit rather than drink juice which is loaded with calories.
• Adopt a low fat diet
• Choose Whole grains (brown rice, whole wheat pasta, whole grain bread) Beware – In breads whole wheat is not necessarily a whole grain bread.
• Choose lean meat such as fresh fish, skinless chicken breast, lean cuts of beef and pork) 4 oz. Do some research. Some fish are healthier than others.
• Restrict your intake. Portion control is important. Eat slowly and eat less.

Step Away from the Refrigerator

• To lose weight you must burn more calories than you take in.

• Supplementing your meals with healthy high caloric snacks such as puddings and shakes.
• Choose healthy foods that are high in calories.
• Consider food your medicine. Don’t skip meals.
• Control diarrhea and nausea
• Consider taking appetite stimulants (ask your doctor)

• Set realistic goals for weight loss
• Take it slow. It took a long time to gain it and it will take a long-term commitment to take it off.
• Don’t think of it as a diet; it is a new way of eating.
• Have your thyroid checked. It is common with PAH to have abnormal thyroid – TSH, T4 blood test
• Deal with depression.
• Be realistic. Even though you may not shed the pounds quickly, you want to exchange water for muscle.
• Eat small meals and healthy snacks that are low in calories but filling. Don’t starve yourself as it may lead to binging.

• Multivitamin
• Iron
• Calcium
• Magnesium
  • check your level periodically with blood test
• Ask your doctor

• National Institutes of Health Office of Dietary Supplements
• National Center for Complementary and Alternative Medicine
• Food and Drug Administration's (FDA) Dietary Supplement Information
• American Botanical Council

• MEDLINEplus for Vitamin and Mineral Supplements
• US Pharmacopeia’s Dietary Supplement Verification Program
• Nature Made Wellness Advisor
• People’s Pharmacy

• Sodium
  • AHA recommends 2400 mg/day – but this is for a healthy person
  • Typical American diet – 6000-8000 mg/day
  • You can retrain your tastebuds
  • The PAH patient should not get more than 3000 mg/day. You can do this by:
    • Adding no salt during cooking (pasta water, vegetables)
    • Adding no salt at the table
    • Avoiding salty tasting foods
    • Avoiding preserved, canned or dried foods.
    • Remember that soy sauce, garlic salt, and celery salt are primarily SALT.

Note: If you are at any stage of heart failure, you really do need to watch your sodium intake. Your body will retain more water if you take in extra salt. The only way to control your salt is to control the food you eat. Some restaurants have notations about fat and salt content on the menu but they are still the exception. Choose your menu items carefully and talk to the wait-person about your special needs.

• Plug up the holes in your salt shaker to wean yourself off the salt (use a toothpick)
• Mix low sodium soy sauce with equal amounts of lemon juice and use sparingly
• Use herbs, spices, lemon, garlic, pepper, olive oil and cheese for seasoning
• Check your supermarket for non-salt seasoning blends
• Fresh and frozen vegetables instead of canned
• Salt substitutes – contain potassium, so check with your doctor first

• 5 tsp. onion powder
• 2 ½ tsp. garlic powder
• 2 ½ tsp. paprika
• 2 ½ tsp. crushed dried thyme
• ½ tsp. white pepper
• ¼ tsp. celery seed

• Read the labels when you shop, especially for convenience foods
• Pay attention to the serving size
• Helpful for calorie counters, too

• Limit total fluid intake to 1.5 - 2 quarts per day
• All fluid counts (including soup)
• A good way to keep track:
  • Fill a two quart container with tap water
  • Every time you drink something, pour the equivalent amount of
    water into the sink
  • You'll be able to keep tabs on your fluid intake by checking the
    contents throughout the day

• Rapid gain or loss of weight is water, not fat or muscle.
• 2 pounds per day or 5 pounds per week
• Weigh every morning, nude with empty bladder
• Put a calendar next to your scale to keep track of your weight every day
• Call your doctor or nurse as directed to adjust your diuretics

• Act on the kidney to help the body get rid of more water, also flush out electrolytes
• Lasix, furosemide (wastes potassium)
• Bumex, bumetanide
• Demadex, torsemide
• Aldactone, spironolactone (saves potassium)
• Inspra, eplerenone
• Zaroxolyn, metolazone (Lasix “booster”)
• HCTZ, hydrochorothiazide

• Heart failure and low cardiac output triggers thirst mechanisms in the brain
• Fruit – frozen grapes
• Cucumber
• Hard candies
• Ice chips
• Gum
• Yogurt
• Pudding or custard
• Gravies and sauces

• Ideal blood level 4-4.5
  • Normal 3.5-5.5
  • Dangerous if too low or too high
• Potassium pills (8-20 mEq) or liquid (10-20%)
• Foods
  • Bananas (1 mEQ/inch)
  • Orange juice
  • Cantalope

• More Foods
  • Broccoli
  • Lima beans
  • Peanuts
  • Sunflower seeds
  • Acorn squash
  • Watermelon
  • Potato
  • Avocado

• Foods containing vitamin K should be eaten consistently or not
  at all. Vit. K helps the blood to clot.
• Foods containing high levels of vitamin K include:
  • Asparagus
  • Broccoli
  • Brussels sprouts
  • Cabbage
  • Endive
  • Watercress, lettuces, parsley
  • Canola and soybean oil, mayonnaise
  • Greens – spinach, collard, mustard

• Multivitamins
  • Look for one without vitamin K
  • One-A-Day
• Nutritional supplements
  • Drinks
  • Energy bars

• Increase effect
  • Garlic
  • Ginger
  • Feverfew
  • Ginko biloba
  • Kava
  • Papain
  • Danshen
  • Dong quai

• Decrease effect
  • Coenzyme Q10
  • Ginseng
  • Green tea
  • Vitamin C
  • St. John’s Wort
  • Goldenseal
  • Yarrow

• Psychological benefit
  • Helps with sleep disturbances
• Use it or lose it
• Physical conditioning to improve function
  • Benefits in heart failure patients
    • Improved self esteem
    • Weight control
    • Maintain muscle mass

• Exercise conditions muscles, not lungs
• Muscles work more efficiently
  • Heart and lungs work less to accomplish the same task
  • Get more out of the muscle at lower energy cost

• Provoke arrhythmias
• Risk of syncope (passing out)
• Make shortness of breath worse
• Need to minimize these risks for PAH patients

• Talk to your doctor.
• Tests that help determine your optimum level of exercise
  include:
  • 6 minute hall walk
  • Desaturation study
  • Cardiopulmonary exercise test (CPET)
  • Symptoms
  • Physical exam
    • Signs of right heart failure

• Signs to stop activity
  • Dizziness
  • More short of breath
  • Full sentence or phrase during activity
  • Palpitations
  • Extreme fatigue or weakness
  • Chest pressure or pain

• Heart failure is worse
• Already short of breath with minimal activity
• You are sick with a cold, flu or pneumonia
• It’s hot or humid outside
• You are alone – especially swimming or hiking

• Allow time to warm up and cool down in your routine
• Exercise regularly (no weekend warriors)
• Exercise in a safe place, not alone
• Stop and lie down if any warning signs appear

• Don’t exercise the upper and lower body at the same time (Nordic Trak, rowing machine)
• Avoid bending or squatting
• Avoid contact or strenuous sports

• Exercise where you can stop safely when you need to
  • Stationary bike
  • No resistance at first
  • Gradually increase time and resistance

• Cardiopulmonary rehabilitation
• Structured 10 week program
• Monitored exercise
• Classes on pulmonary diseases, diet, exercise, medications, stress management
• Support group atmosphere
• Maintenance program

• Walk on level ground, climate controlled (morning, evening, the Mall)
• Gradually increase your distance
  • pedometer

• Start with 1-2 lb. up to 10 lb.
  • High reps, low weights
  • Use canned foods
  • Exhale when you lift, inhale when you lower the weight

• Gym program if cleared by your doctor (Curves)
• Exercise with others – family, other PAH’ers

• Talk with your doctor or nurse before embarking on new diets or vigorous exercise.
• Learn your body’s warning signs to rest.