Support.

Knowledge.

Hope.

Welcome to the

PHA SA South Africa Website

This website is for anyone who suffers from Pulmonary Hypertension (PH) as well as their friends and family.

Here you will find information about the condition, as well about the PHA South Africa organisation.

Living with PH

Intro

“She asked, ‘You women go through all of this every day?’ and we said, ‘Yes, we do. We do and we have no choice because we want to live.’”
PH patient Diane Ramirez, on former U.S. Senator Elizabeth Dole’s reaction to medicating for PH

While it can be difficult to imagine in the days and months following diagnosis, many patients develop strategies to cope with the physical and emotional aspects of living with PH and lead happy, fulfilling lives. With a bit of patience, planning, and flexibility, many people affected by PH find ways to work, travel, exercise, and do the things they loved before they were diagnosed.

Today, people diagnosed with PH can benefit from the experience of thousands of other patients who have learned to effectively manage this illness. Explore this section to find tips, tools and resources to help you adapt to life with PH.

Join PHA SA facebook support group.

Living

Day-to-Day

Life with pulmonary hypertension is an ongoing lesson in flexibility. You may need to let go of some of the daily details that seemed important before you were diagnosed to make room for some of your new responsibilities. Household tasks that exacerbate PH symptoms may require thoughtful work-arounds.

Read on for tips from other PH patients who want you to know that life goes on, even when you're low on energy. While PH can make it more challenging to do the things that need to get done, it is possible to implement lifestyle modifications to ease your daily routine.

Conserving Energy

Staying Active

Medical review by Traci Stewart, RN, MSN, CHFN, Cardiomyopathy Treatment Program, University of Iowa.

Climate

And PH

From time to time, you might experience weather-related conditions that make you feel uncomfortable. Sometimes it’s difficult to even notice – you may be too busy with something to notice small but important changes.

Temperature, altitude and humidity can all have a big impact on your health. Learn here how to prepare for and detect adverse conditions.

High Altitude and PH

Warm Weather and PH

Cold Weather and PH

Diet

And Nutrition

Just as diet and nutrition were concerns before your PH diagnosis, pulmonary hypertension patients must often make an extra effort to be conscious of what they eat. Certain foods and vitamins might interact with medication, contribute to edema (the build-up of excess body fluid), or increase nausea and discomfort.

Read on to learn more about dietary considerations for PH patients.

Dietary Considerations

For PH patients

Controlling
Salt and Sodium Consumption

Sodium helps regulate the balance of fluids in your body. When water builds up in your tissues (a common problem for PH patients), the volume of blood your heart has to pump also increases. One of the most effective ways of alleviating this condition is to reduce the amount of salt in your diet. If the edema is severe, however, or if it doesn’t respond to a low-salt diet, your doctor may recommend a low-sodium diet. A diet that is low in salt is not necessarily also low in sodium.

Research has shown that a low-salt diet will have a greater impact on your health if it is coupled with a diet rich in calcium, magnesium, potassium, and phosphorous.

Your taste for salt will decrease over time. Therefore, if you decrease your salt intake in steps, you will hardly notice its absence. You will even begin to notice how much more flavourful your food tastes.

  • Check labels. Much of the salt we consume each day comes from prepared and packaged foods. Read the labels of all prepared foods and look for low-salt versions.
  • Break the habit. If you are in the habit of salting your food, stop before you shake! Many times, we might salt our food without thinking, or before we have even tasted a bite. Breaking the habit will help you feel better.
  • Never add salt during cooking. It takes about ten times as much salt in cooking to achieve the flavour you’ll get when you add salt at the table. Let your family season to taste on their own plates.
  • Build barriers! Put the tip of a toothpick into two holes in your saltshaker and break them off. Now when you use your shaker you will be getting less salt. Each day close off two more holes. When you close off all the holes, consider throwing out the shaker!
  • In the produce aisle Foods pickled or preserved in brine, such as olives, sauerkraut, pickles, pickled herring and pickled eggs; Pre-seasoned frozen vegetables; Most packaged and canned veggies.
  • In the kitchen Seasonings that contain salt (you might be surprised!), such as coating sprays, garlic preps and baking mixes as well as meat seasonings and celery salt; Buttermilk.
  • For dinner Most packaged and canned soups, stews, vegetable and pasta dinners; prepared meat products such as hot dogs, sausage, salami, dried beef, smoked meats, pre-cooked chicken breasts and rolls, cold cuts and canned meats; Breaded or battered foods, both fresh and frozen.
  • On the side Condiments such as relish, ketchup, soy sauce and Worcestershire sauce are very salty. Find low-salt versions or replace these with flavourful herbs and veggies. Packaged/bottled sauces such as clam sauce, red spaghetti sauce and curry sauce are also often salty. Soup starters and bouillon have a lot of salt.
  • During the day Salted snack foods such as potato chips, corn chips, pretzels, crackers and salted nuts; Some instant breakfast drinks
  • Be vigilant. Read the labels of all prepared foods, as these are the source of most of the sodium in your diet. Many foods now have low sodium versions. Don’t be misled by “light” or “reduced sodium” labels. “Light” soy sauce has more than 500 mg of sodium per tablespoon!
  • Do your math. Check the serving size on processed foods when adding up your sodium intake.
  • Don’t forget your meds! Ask your physician or pharmacist about the sodium content of your prescriptions. Most medicines contain less than 5 mg of sodium per dose, but some contain up to 120 mg per dose.
  • In the medicine cabinet Mouthwashes and toothpastes; Some chewable antacid tablets; Aspirin (50 mg/tablet); Some prescription drugs (ask your pharmacist); Laxatives.
  • In the spice rack Celery and parsley flakes.
  • In the fridge Sauerkraut; Cheese; Milk; Cold cuts; Frankfurters.
  • In the pantry Any salted crackers or chips; Canned tomato juice; Canned vegetables with added salt; Olives

Some PH doctors advise PAH patients to follow the American Heart Association (AHA) guidelines when being conscious of salt and sodium. The AHA recommends that healthy adults reduce their sodium intake to no more than 2,400 milligrams per day. This is about 1 1/4 teaspoons of sodium chloride (salt). They further recommend that if you have heart failure, you reduce your sodium to 2,000 mg. Listings of the sodium content of various foods and other guidelines can be found on the AHA’s website. (http://www.americanheart.org/)

1/4 teaspoon salt = 500 mg sodium
1/2 teaspoon salt = 1,000 mg sodium
3/4 teaspoon salt = 1,500 mg sodium
1 teaspoon salt = 2,000 mg sodium
1 tsp baking soda = 1,000 mg sodium

Prepared foods must follow these FDA set guidelines when making claims on their labels. The amounts given below are for one serving, so you must read the label to determine the serving size.

  • “Sodium-free” means less than 5 milligrams of sodium per serving
  • “Very low sodium” means 35 milligrams or less per serving
  • “Low sodium” means 140 milligrams or less per serving
  • “Unsalted,” “no salt added” or “without added salt” mean exactly what they say: no salt is added to the food. These foods are not necessarily low in sodium, because some sodium may naturally be present in the ingredients.
  • "Healthy”means less than 360 mg sodium per serving, or no more than 480 mg per meal for meal-type products.
  • Rather than souring your food, Fresh or frozen lemon juice “brightens” the taste, pepping up everything from vegetables to chicken and fish.
  • Peppers bell peppers, hot peppers, and freshly grated peppercorns - delicious varieties, lots of flavor.
  • Garlic fresh chopped garlic, dried garlic flakes, bottled garlic puree.
  • Fresh herbs these are far superior to the store-bought variety and can grow in a windowsill garden - beauty and function!
  • Potassium-containing salts (not potassium chloride, which is dangerous) available in most supermarkets, these salts have the benefit of acting as a potassium supplement, which may help you if your blood potassium levels are sometimes low. Some patients cannot take extra potassium and are put on low-potassium diets, so be sure to seek your doctor’s advice before you start using potassium-containing salts.

Monitoring
Your Fluid Intake

Restricting fluids can help avoid or decrease swelling and fluid retention. Patients are often placed on a two-liter (2000cc) fluid restriction, but each patient is different so consult your PH specialist.

  • Measure the amount of fluid you are drinking every day, at least for the first few weeks. Two liters of fluid equals 8.6 cups. Remember to count the water you take with your pills. Soups, sherbet, popsicles, and jello are also counted as fluids. A cup of ice is usually counted as ½ cup of water.
  • Weight gain is often one of the first signs that you are retaining fluid. Weigh yourself daily. If you gain 2-3 pounds in a day, or if it continues for two or more days, call your healthcare provider.
  • Try keeping a food journal including how much fluid and sodium you have consumed each day. Writing it down can help you stay on track.

Managing
Nausea and Vomiting

Nausea and vomiting can be side effects of drugs like epoprostenol and treprostinil. They can also be caused by the heart failure common in PH. Vomiting is how our body gets rid of food it thinks should not be in the stomach. It is stimulated by sensory receptors in the wall of the stomach including stretch receptors that indicate when the stomach is too full, and chemoreceptors that detect possible toxins and poisons. The emetic centre in the brain responds by causing a wave of reverse peristalsis in the stomach muscles, expelling the contents.

While vomiting is unpleasant, it is only dangerous when it is severe or prolonged. The main danger is loss of fluids and minerals (magnesium, calcium and potassium). This can cause dehydration, weight loss, and an electrolyte imbalance. If too much fluid is lost, the situation can become dangerous and intravenous fluids and electrolytes may be needed to reverse the imbalances. Nausea, early satiety (feeling over-stuffed) and lack of appetite can be symptoms of worsening right-side heart failure due to progression of PH. If you have prolonged nausea or vomiting, contact your doctor. Also, bosentan and abrisentan are metabolized through your liver, so if you are taking these meds and experience nausea and vomiting you should alert your healthcare provider.

  • Don’t eat large meals that fill your stomach, drink large amounts of liquids with meals or drink too many carbonated beverages.
  • Avoid greasy and fatty foods. Fat causes food to remain in the stomach longer, increasing the chance you may vomit.
  • When you feel nauseated, nibble on high-carb foods such as crackers, pretzels, dry toast and soft bread.
  • Cold, non-acidic liquids often help to settle a stomach (try small sips of ice water, ice chips, iced herbal teas, iced tea and small tastes of fruit sorbets).
  • Sit up when you eat, and don’t lie down immediately after eating.
  • Avoid any food that you know causes gas or “repeats” on you (makes you burp).
  • Place an ice pack on the back of your neck. The gel packs used to cool Flolan® work well.
  • Open windows and let in fresh, cool air. Stale or smoky air makes nausea worse.
  • Keep your teeth and tongue brushed, your teeth flossed and your mouth rinsed. This will help keep bad flavours and odours from developing.

Healthy
Ways to Lose Weight

Whether it's for a new year's resolution, impending bathing suit season, or on the advice of their doctor, many people set goals of reaching a healthy weight or improving physical fitness. Here are some tips to help you achieve your goal, while taking care of your PH at the same time.

The first step in planning any goal is to know where you want to go. Begin by calculating your BMI (Body Mass Index).

Use the calculation

Or use this calculator online.

A BMI less than 18.5 is underweight, a BMI of 18.5- 24.9 is healthy, 25-29.9 is overweight, and greater than 30 is obese.

While the BMI is not perfect, aiming for a number in the healthy range is generally considered a sensible target. The good news is, even modest weight loss (around 5-10 percent) can have significant health benefits. Work with your PAH provider to develop appropriate and realistic weight loss goals for you.

It is important to learn how many calories per day you usually consume. Try keeping a daily food diary for a week to give you an idea of your average daily calorie intake. There are several online calorie counters or you can purchase a calorie counting book at your local bookstore.

You need to be in a deficit of 3,500 calories to lose one pound. You can do this by either eating 3,500 fewer calories or burning 3,500 calories more than usual. Try eating 500-1000 fewer calories each day. By the week’s end, you will have cut 3,500-7,000 from your diet, giving you a weight loss of approximately 1-2 lbs.!

Losing weight can be tough, and it is natural to want instant results. However, generally people who lose weight gradually (1-2 lbs. per week) are more successful at keeping the weight off than those who lose it quickly. Try to focus on lifestyle changes rather than going on a diet.

There are many advertisements promising fast or effortless weight loss. These claims are generally false, exaggerated or even dangerous, especially for PAH patients. For example, some diet products contain stimulants, which can worsen PAH.

Diets that eliminate certain types of foods (carbs, fats, etc.) are not generally sustainable and have not been shown to have long-term weight loss results. PAH patients need to be especially mindful of their nutritional, electrolyte and fluid intake, particularly if they are on coumadin, diuretics or potassium supplements.

Currently popular are diets promising fast weight loss by using hormones combined with an extremely low-calorie diet. These have not been studied sufficiently, and we do not know their long-term effects, particularly in people with PAH. Remember, if it sounds too good to be true, it probably is.

For PAH patients, physical fitness can be challenging. Patients often worry about the safety of exercise or feel too fatigued or short of breath to be active. Your body was designed to move. However, you will need to exercise within the recommendations of your PAH provider. A great place to start is by participating in a cardiopulmonary rehabilitation program at your PAH center or local hospital. This is a monitored exercise program designed for people with activity limitations from heart and/or lung disease. Physical therapists who are knowledgeable about PAH will teach you about safe exercise and better breathing.

Walking is generally safe, but you will need to walk at your own pace. Increased shortness of breath, chest pain, heart palpitations or dizziness are signs that you may need to slow down and rest.

Patients with less severe PAH may be capable of more intense exercise, but it is important to get clearance from your PAH provider.

Keep in mind that your needs are unique, even from other PAH patients. It is extremely important before deciding to embark on a diet/exercise program or before considering starting additional supplements/medications that you discuss your plan with your PAH provider. He or she can help you decide on a healthy plan to meet your goals. Remember, they are there to help!


By Lisa L. Roessel, FNP-BC, Pulmonary Hypertension Program Coordinator, Division of Pulmonary & Critical Care Medicine, Legacy Clinic Northwest, Portland, Ore.


Exercise
and PH

It’s well-known that exercise is very beneficial for healthy individuals, increasing cardiovascular and muscular fitness, improving mood, controlling weight and lowering the risk of systemic hypertension and heart disease. Exercise may help lower the risk of chronic illnesses such as diabetes. There have also been several published articles showing increased walk distance in PAH patients undergoing cardiopulmonary rehabilitation programs.

However, relatively little is known about the risks and benefits of exercise for pulmonary hypertension patients. Exercise is important in maintaining a healthy lifestyle, but the symptoms of PH under exertion make it difficult for many patients to find the right type of activity. Many PH patients become short of breath under mild to moderate exertion, but feel fine at rest. Those who experience shortness of breath at rest or very mild exertion must be very closely monitored, as exercise can induce fainting, excess stress to the right side of the heart, and other problems.

Because of the varying severity of PH from patient to patient (and other health-related factors), recommendations on exercise for PH patients are different for each individual, and may change over time depending on symptoms and response to treatment. Your PH specialist can help you create an exercise program that works for you. Always speak with your PH doctor before performing strenuous labour or beginning an exercise regimen.

  • Cardiovascular activities such as walking, biking and swimming. Walking on an incline or exercising both arms and legs simultaneously can produce a greater increase in blood pressure than lighter exercise, and so these exercises should be avoided or attempted conservatively.
  • Activities focusing on muscle tone, such as stretching or arm and leg lifts. Light functional resistance exercises may be considered for some individuals, but should be done below shoulder or heart height and with frequent breaks.
  • Do not over-exert. Activity should be stopped at the first sign of symptoms such as light-headedness, fatigue, chest pressure, palpitations or excessive shortness of breath.
  • a recovery time of five to ten minutes, without exhaustion or worsening of symptoms, to help you measure how much activity is appropriate.
  • Avoid activity in outdoor temperature extremes. Generally, cold, heat, humidity, high elevation or a concomitant illness will worsen your exercise tolerance and warrants additional caution.