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.
