The following PH Tips are excerpted from
chapter 9 - written by nutritionist, author, and PH patient Maureen
Keane - and chapter 12 of Pulmonary
Hypertension: A Patient's Survival Guide - Third Edition.
Nutrition | Nausea
| Traveling
| Working | Miscellaneous
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Special Submission:
Gel Pack Insulating Pads
Given out free by Larry & Karen Moody
Inserted into the Flolan pouch these can be used to
keep gel-ice packs colder longer
View info sheet on the Gel Pack Insulating Pads
Contact the Moodys at Lmoody@mm.com
or
Larry & Karen Moody
8268 Stillwater Blvd. N.
Lake Elmo, MN 55042
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Sodium helps regulate the balance of fluids in your body. When water
builds up in your tissues, one of the most effective ways of getting
rid of it is to reduce the amount of salt or sodium in your diet.
Doing so can reduce the amount of fluid in tissues, which in turn
reduces the volume of blood your heart has to pump. Avoiding salt
in your diet reduces the amount of sodium chloridein your food.
If the edema is severe or if it doesn’t respond to a low-salt
diet, your doctor may recommend a low- sodiumdiet. 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 notice how much more flavorful your food tastes.
Here are some ways to cut back on salt:
- Most salt enters the diet with prepared and packaged foods.
Read the labels of all prepared foods and look for low-salt
versions.
- Don’t salt your food automatically.
- Don’t add salt during cooking; let your family season
to taste on their own
plates.
- 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.
Here are some salty foods to avoid:
- Those preserved in brine or pickled, such as olives, sauerkraut,
pickles, pickled herring and pickled eggs
- Salted condiments such as relish, catsup, soy sauce, and Worcestershire
sauce
- Prepared meat products such as hot dogs, sausage, salami,
dried beef, smoked meats, cooked chicken breasts and rolls,
cold cuts, and canned meats
- Breaded or battered foods, both fresh and frozen
- Seasonings containing salt, such as coating and baking mixes
for meat and
celery salt
- Packaged/bottled sauces such as clam sauce, red spaghetti
sauce, and curry
sauce
- Salted snack foods such as potato chips, corn chips, pretzels,
crackers,
and salted nuts
- Buttermilk
- Some instant breakfast drinks
- Most packaged and canned soups, stews, vegetables, and pasta
dinners
- Pre-seasoned frozen vegetables
Instead of seasoning your food with salt, try these substitutes:
- Fresh or frozen lemon juice: it doesn’t make food sour,
but “brightens” the taste, pepping up everything from
vegetables to chicken and fish
- Peppers: bell peppers, hot peppers, and freshly grated peppercorns
- 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 window-sill garden
- Potassium-containing salts (not potassium chloride, which
is dangerous): available in most supermarkets, and have the
benefit of acting as a potassium supplement, which may help
you if your blood potassium levels are sometimes low
To decrease your sodium intake:
- Read the labels of all prepared foods. Most of the sodium
in your diet will come hidden in prepared foods. Many foods
now have low sodium versions. Don’t be misled by “light”
or “reduced sodium” labels. “Light” soy
sauce has over 500 mg of sodium per tablespoon!
- Check the serving size on processed foods when adding up
your sodium
intake.
- Ask your physician 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.
- Do not use celery flakes or parsley flakes—they are
really high in sodium.
Hidden Sources of Sodium:
- Some chewable antacid tablets
- Aspirin (50 mg/tablet)
- Celery flakes
- Parsley flakes
- Some prescription drugs (ask your pharmacist)
- Laxatives
- Mouthwashes
- Toothpastes
- Sauerkraut
- Canned tomato juice
- Canned vegetables with added salt
- Olives
- Cheese
- Milk
- Cold cuts
- Frankfurters
- Any salted crackers, chips
Sodium levels in salt. The American Heart Association
(AHA) recommends that healthy adults reduce their sodium intake
to no more than 2,400 milligrams per day. This is about 1 and
1/4 teaspoon of sodium chloride (salt).
They further recommend that if you have heart failure, you reduce
your sodium to 2000 mg. Some doctors advise PAH patients to follow
the AHA guidelines. Listings of the sodium content of various
foods and other guidelines can be found on the AHA’s website
(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
How to interpret sodium descriptions. 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 mealfor meal-type products.
Nausea and vomiting can be a side effect of drugs like epoprostenol,
treprostinil, and bosentan. 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 center 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. If you
have prolonged nausea or vomiting, contact your doctor.
Here are ways to avoid nausea:
- 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, ice 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 pacs
used to cool Flolan
work well.
- Open windows and let in fresh, cool air. Stale or smoky air
makes nausea worse.
- Keep you teeth and tongue brushed, your teeth flossed, and
your mouth rinsed. This will help keep bad flavors and odors
from developing.
- If you need a refrigerator or freezer at work for your meds,
the Americans with Disabilities Act requires your employer to
provide one, as well as to make other reasonable accommodations
to allow you to do your job.
- If you don’t treat your disability like a big deal,
others won’t either.
- If you sign up for health insurance the first time it’s
offered you may not have to take a physical or worry about preexisting
conditions. (Call ACCESS before changing or quitting jobs. See
Chapter 13.)
- If you run into discrimination because of your PH, your union
can help fight for your rights.
As treatments improve, more of us will be able to work. The Ticket
to Work and Work Incentives Act of 1999 pays benefit planners
(who work for nonprofit groups or state agencies) to advise persons
who now receive Social Security disability benefits, but who want
to return to work. The planners will explain SSA’s work incentives,
how going back to work will affect your benefits, and what vocational
and rehabilitation and other support might be available. We suggest,
however, that you first contact the lawyers at ACCESS if you are
thinking of going back to work, and talk to them before you talk
to a benefit planner.
Here are some tips that just didn’t seem to fit anywhere
else in the book, but were too good to ignore. The warning about
general anesthesia really comes from doctors, but PH patients
passed along all the rest.
When you feel breathless, pause. Pretend to admire the
scenery or look for something in your billfold. Germans call this
technique Schaufenster schauen (window shopping).
Don’t breathe in dust when handling mulch. Mulch contains
all kinds of bacteria and fungi that can get into lungs and kick
up trouble. The resulting flu-like illness is called “organic
dust toxic syndrome.” Best way to avoid trouble? Dampen the
compost before using it.
Be cautious about using indoor, bubbly hot tubs. There
is a disorder called “hot-tub lung,” in which a nasty
bug, Mycobacterium avium, gets into your lungs and drains your
energy. National Jewish Medical and Research Center in Denver,
and the Mayo Clinic in Rochester, MN, have expertise in this disease.
Avoid smoke and smoking smokers. Smoky fireplaces and
forest fires can really get to us, too. Wood smoke can worsen
lung disease.
No general anesthesia without consulting your PH doc.
General anesthesia can be dangerous for us, especially if our
PH is not well controlled. There are some medical procedures,
however, that just can’t be done with only local anesthetic.
Your PH specialist should be involved in any such undertaking,
and it should be done at a center with PH experience.
Get a carbon monoxide (CO) detector. CO poisoning is potentially
fatal for everyone, but even more likely to kill persons with
PH. CO is odorless and colorless. It may leak from a poorly vented
furnace or other fuel-burner. A CO detector can be plugged into
an electrical outlet in your house. You may even want to visit
an aviation shop for private pilots (an “FBO”) at an
airport, where they sell simple dots you can stick on the dash
of your private airplane, Hummer, Honda, or John Deere. The dots
change color if CO is present.
Consider starting a project to help pass the time while
you wait for a transplant or for your medicine to start working.
You’ll be happier with something to focus on other than your
woes. Things that can be done at your own pace and own place include
arts and crafts, organizing photo albums, doing genealogical research
on your family (there are oodles of websites that can help), or
just sorting through papers. Make a list of the books you’ve
always meant to read, then actually read them. What a luxury!
Lighten kitchen work. Get light-weight plastic dishes
and glasses, and have paper plates available for the really bad
days. Ask your kids to unload the dishwasher, set the table, and
do the bending down necessary to get some pots and pans; just
leave the ones you use a lot right on the counter. Look for dishwasher
detergent tablets, which are lighter than bottles of liquid or
boxes of powder.
Children can help out a lot. Even preschoolers can help.
They can sort the wash, empty the dryer, and fold the clothes
(you can sit on a chair to help). They can carry the folded clothes
to their rooms. Older children may be able to make dinner once
a week. A basic weekly dinner menu can save a lot of effort and
waste. For example, Sunday is pizza and salad; Monday is grilled
chicken, rice, and carrots; Tuesday is tuna casserole, peas, and
fruit salad; etc. You’ll be surprised how this simplifies
buying groceries and saves on food waste. It also makes it easier
for everybody in the family to learn to prepare a dinner or two.
They won’t be running to you and asking where the timer is
or how to wash lettuce.
Make your bed from the inside, before you get out of it,
by pulling the covers up and straightening them; this can save
some bending over.
On-line grocers can be a godsend. You order on their website,
pick a delivery time, and they will often put the groceries right
on your kitchen counter. Local stores will sometimes let you order
by phone and then deliver your groceries for a small fee. If you
go to the store yourself, use the electric cart if you’re
tired—we don’t get brownie points for suffering.
Shop online or by catalog rather than running around town.
You can do so on PHA’s website through iGive
and eScrip—flowers, fruit baskets, books, clothes, pet
supplies—you can buy just about anything, and PHA gets a
percentage at no cost to you.
Stock up on staples at a warehouse. This lightens your
grocery store load, saves money, and helps you stay prepared for
power outages, earthquakes, floods, or snowstorms.
Use dry cleaners, laundries, and pharmacies that pick up and
deliver. Many also have a drive-through option.
Pick your favorite charity and get involved. Many PH patients
can do work that isn’t too strenuous, such as reading to
children in day care, visiting the elderly in nursing homes, helping
out at a local historical landmark or museum, or making phone
calls for the local blood bank. PHA has lots of work for volunteers,
too—this book is one such project.
