[C]all your insurance company to see what procedures must be
pre-certified. Keep a written log of whom you spoke with and when.
Ask if you can donate your own blood...in advance of surgery.
You may feel better in your own clothing if you have someone
who can launder it for you.
Remember warm socks.
Leave your worries and your work behind.
[Y]ou may refuse care administered by any staff member with
whom you don't feel comfortable....
Read your medical chart.... Verify all drugs given to you....
Tell the nursing staff right away if something seems wrong.
Always ask for an itemized bill.
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If You're Hospitalized
The following excerpt is taken from Chapter Ten of
Non-Hodgkin's Lymphomas: Making Sense of Diagnosis,
Treatment, and Options by Lorraine Johnston, copyright
1999 by O'Reilly & Associates, Inc. For book orders/
information, call 1-800-998-9938. Permission is granted to
print and distribute this excerpt for noncommercial use as
long as the above source is included. The information in
this article is meant to educate and should not be used as
an alternative for professional medical care.
Some people are frightened by the idea of being admitted to
the hospital, even while realizing that the best care for a
particular problem can be delivered only with the
round-the-clock medical scrutiny available in a good
hospital.
This article will help you view the experience in a positive
light, and will highlight the precautions you can follow to
make your stay brief and fruitful. We will examine the
experience chronologically, beginning with preparation and
admitting procedures, and finishing with discharge and home
care.
If you know in advance that you'll be admitted to the
hospital, you can plan to make your stay brief and successful.
If your admission is a planned one for a transplant or for
surgery, copious helpful information, including what to bring,
will be given to you in advance by the staff.
You may be admitted via the emergency room if symptoms are
unusual, have a rapid onset, or are associated with immediate
danger, such as difficulty breathing. It's best to avoid the
emergency room, though, by careful tracking of symptoms and
timely communication with your doctor. Emergency-room care
may be greatly delayed, or may vary in quality, based on
several factors beyond your control, such as the seriousness
of the illnesses of others waiting or the experience of the
medical staff on duty. If you must use an emergency room, be
sure to call your oncologist and let her know what's happened.
Arrangements
Here are some general tips for preparing in advance for a
hospital stay:
- You can smooth the path of abrupt admissions by having
an overnight bag ready that contains much of what you'll
need.
- If you're being admitted for surgery or any other
procedure, call your insurance company to see if the procedure
must be precertified. Keep a written log of whom you spoke
with and when.
- If you're being admitted for surgery, verify that the
surgeon and the anesthesiologist are board certified in their
areas of expertise. The Official ABMS Directory of Board
Certified Medical Specialists is a publication that can be
found in a local library, and the American Medical Association
also can verify board certification. Your state licensing board
or state medical society can verify how many years of
experience your surgeon has.
- If you're being admitted for surgery, obtain and review
all consent documents. Strike any clauses that connote that
staff other than your surgeon may be participating in your
procedure, unless you and your doctor have already discussed
who else might be participating and you're comfortable with
these additional personnel.
- Hospitals that receive federal funding or are governed by
certain local laws must adhere to federal or local laws
regarding informed consent prior to use of human subjects for
research. Government-funded hospitals include most university,
state, and nonprofit hospitals. Verify whether your hospital
receives any federal funding, and phone your state health
department to determine if your state has its own laws
regarding consent issues. If your hospital is a private
for-profit hospital that receives no federal funding and is
not governed by similar local laws, question closely any
treatment suggested for you. Ask your doctor if your
proposed treatment represents state-of-the-art treatment as
defined by the NCI, or if you'll be treated in an
investigational study.
- Ask if you can donate your own blood (autologous donation)
in advance of surgery.
- Read as much as you can on the procedure you'll be
having.
- Make notes about all health problems you have. Make
several photocopies of these notes, because each group of
medical caretakers you meet will ask the same questions
again.
- Arrange for child care, if appropriate. Most likely this
care will be provided by a well-informed friend or relative,
but if not, prepare abundant information well in advance, in
writing, including phone numbers of relatives and
pediatricians.
- Contact a pet-sitter, if needed. Provide clear written
instructions regarding feeding and any health problems.
Provide your veterinarian's address and phone number, and
those of an emergency all-night veterinary service. Leave
all supplies, including carrier and medications, in a
prominent place.
- Have the mail and newspapers held if nobody will remain
at home. Make arrangements for a plant-waterer, if needed.
- Pay any upcoming bills in advance.
- Plan transportation to and from the hospital, allowing
plenty of time in everyone's schedules for check-in and
check-out procedures. Hospitals are not very good at checking
patients out quickly, especially if you need special
instructions about home aftercare.
- Call the hospital and ask about parking arrangements,
such as less expensive long-term passes for those who will be
visiting you during an extended stay, special parking for
outpatient units, or discounted or waived fees for those
accompanying you during a surgery.
- Arrange to use your laptop computer during your stay if
you enjoy Internet email support from friends or other people
with NHL. Ask first if the hospital has digital phone lines.
If so, borrow or buy an adapter so your modem won't be ruined.
Tell email friends if you'd love to receive email during your
stay, but point out that you might not be able to respond.
Ask them not to be offended, but to keep on writing.
- Contact your employer, not only to arrange for use of sick
time or disability pay, but to ensure his emotional and
professional support when you return to work. Ask for a copy
of company leave policies and the federal Family and Medical
Leave Act in order to become acquainted with all employment-
related options.
- Check your calendar and cancel any commitments that
conflict with your hospital schedule.
- Arrange for a visiting or live-in home nurse if you think
you or your caretaker will need extra help after your hospital
stay. Many insurance companies will pay toward this service if
your doctor says you meet certain conditions, such as being
temporarily unable to bathe.
What to bring
Some people pack too little, assuming that the hospital will
provide everything. Here are some suggestions:
- Prepare several copies of lists of your medications,
both prescription and over-the-counter. Never assume the
hospital has spoken with all of your doctors.
- Bring your health insurance card and your certificate
showing you donated your own blood, if applicable.
- Bring your own over-the-counter medications if you suffer
from hemorrhoids, athlete's foot, tooth sensitivity, or other
conditions. You must remember to inform the staff first,
though, if you need to use these supplies: they are medications,
and they may interact unfavorably with the medications your
doctor has ordered.
- You may feel better in your own clothing if you have
someone who can launder it for you. Don't bring any clothing
with metal zippers or snaps, which may interfere with diagnostic
tests such as x-rays or MRI. If you're having surgery, choose
clothing that won't press on your incision or cause you undue
strain as you dress. Choose shirts with easy sleeves that can
accommodate IV lines. Add something dashing or seductive to
the overnight bag if you think an ego boost will help. If you're
being hospitalized for a transplant, pack loose cotton garments
that can withstand sanitizing procedures involving high heat.
- If you pack a razor, avoid the plug-in electric variety,
as the local fire code or the proximity of hospital oxygen
supplies may regulate against these. Battery-operated razors
generally are most acceptable; however, a disposable razor may
do, provided you're able to manipulate it while feeling less
than your usual self, and provided you're not told to avoid
cuts and scrapes while your blood counts are low.
- Bring eye and ear coverings for sleep. Hospitals can be
noisy places at odd hours.
- If music will help you relax and sleep, bring a personal
player with a headset to avoid disturbing your roommate.
- If you anticipate a long stay, bring pictures of home,
family, pets, and loving experiences.
- Remember warm socks. (The nursing staff love wild socks.)
- If this is a return trip, bring the phone the hospital
may have sold you during your prior stay.
- An old sock full of quarters will help you and your
family make postsurgical phone calls, pay for parking, buy
newspapers, or buy those dreadful but sometimes unavoidable
vending-machine meals. Unlike a purse or a wallet, a ratty
old sock doesn't look worth stealing.
- Pack a list of phone numbers of friends and family.
- Most hospitals provide some toiletries, such as soap,
washcloths, and a toothbrush, but you may prefer your own.
Avoid heavily scented products, though, as these may make
you or your roommate ill.
- Prepare several copies of your advance directives to
inform the staff of your wishes for or against extreme
life-support measures.
- Bring books that are lightweight, both tangibly and
intellectually. You may be groggy and achy for a spell.
Don't plan to read and analyze the Hardy-Weinberg equilibrium
or to hold open a seven-pound tax code manual during your
hospital stay.
- For females, pack a long, loose shirt or tunic top for
the times when you're told to "take everything off, and put
on this gown with the opening in the front." Sooner or later
you will indeed have to open these in the front, but you'll
feel less the victim of someone else's poor sartorial taste.
- For both males and females, pack a pair of baggy boxer
shorts for the times when you're told to "take everything
off, and put on this gown with the opening in the back."
What not to bring
Some people bring too many things or inappropriate things to
the hospital.
- Leave all jewelry at home. If you want to wear your
wedding band, ask the staff about this first. They may secure
it with tape during a surgery, for example.
- Scented toiletries. You may feel nausea after certain
procedures and scents may tip you (or your poor, captive
roommate) over the edge of gastric comfort. Moreover, you
may come to associate your once-favorite scent with a
hospital stay.
- Leave your purse, wallet, credit cards, and money--beyond
incidental change for newspapers and the like--at home or in
a safe-deposit box.
- Leave your worries and your work behind. Let your family
and the hospital staff coddle you with backrubs. Channel-surf
and watch sleazy TV shows for the utter decadence of it.
Order everything on the hospital menu and share it with your
pals.
Admission will start with paperwork, phone calls, questions
about next of kin, phone and TV service preferences,
attachment of a plastic ID bracelet, and directions to the
correct room and floor. Have copies of all insurance paperwork
and medical records ready
After admission, a volunteer may be assigned to stay with you
briefly until you've arrived in your room and become oriented,
especially if you're having surgery.
Once you have arrived in your room, the nursing staff will
take control and prepare you for whatever care you will need.
They'll check vital signs such as pulse and temperature, and
may start an intravenous line (IV) for administering drugs.
You'll probably find that nurses will return a hundredfold
any small effort you make to be friendly and kind.
Ask now about the meal menus, as there is usually a delay in
getting meal preferences to newly admitted patients.
The nursing staff are the first group you're likely to
encounter in your hospital stay, but they're just one group
of a confusing array of medical personnel you'll meet.
Note that you may refuse care administered by any staff member
with whom you don't feel comfortable, and may ask for a
more experienced person to attend to you.
Nurses
Hospital nurses will provide most of your care:
- Nurses' aides and licensed practical nurses (LPNs) will
help wash you, help you in and out of bed, make your bed, and
perform simple nursing tasks such as checking your pulse and
temperature. LPNs, but not nurses' aides, have completed
vocational training and may provide medication.
- Registered nurses (RNs) have earned a college degree in
nursing and passed a licensing examination. RNs are able to
provide more complex and critical medical care than LPNs,
such as changing wound dressings, starting IVs, and
administering IV medications.
- Nurse practitioners or clinical nurse specialists are RNs
who have undertaken extensive additional training and are
licensed to provide many of the same services that doctors
provide. In some states they are able to prescribe drugs
under the auspices of a physician. In some hospitals or
clinical settings they may perform simple surgeries and
procedures, such as lancing abscesses.
- Head nurses and nurse managers are in charge of other
nurses, entire floors, or patient centers. Although all
nurses now face the additional burden of administrative work
that deprives them of time they prefer to spend with their
patients, head nurses and nurse managers usually handle
administrative issues exclusively, and seldom provide patient
care unless staffing is inadequate.
Doctors
In teaching hospitals, you'll encounter the full spectrum
of doctors in various stages of training. In some community
hospitals, you'll encounter just residents and attending
physicians. In other community hospitals that have agreements
with nearby medical schools, you may find an amalgam of the
two systems. Doctors in various stages of training include:
- Medical students have completed four years of college and
are undertaking four additional years of medical school.
Medical students do not treat patients, although they may
accompany an attending physician on rounds, and the physician
may elicit their opinions.
- Interns, also called first-year residents, or postgraduate
year-one students, have completed four years of medical school
and are in the first year of three to six years of primary
specialty training. They will not give you care unless
supervised by much more experienced personnel, such as the
attending physician or a more experienced resident, but that
supervision may be distant. If you prefer not to be treated
by an intern, say so.
- House officers (once called residents) may be postgraduate
year-two students, postgraduate year-three students, and so on.
These physicians are still receiving primary training that can
last from three to six years, depending on the field.
- Fellows, or teaching fellows, have completed their six
years' primary training, and have undertaken three years of
additional training in a subspecialty.
- The attending physician is in charge of all fellows,
residents, and interns. In university hospitals, she is likely
to be a faculty member. In community hospitals, she is hired
to oversee patient care in her area of specialty based upon
her reputation in the medical community.
Almost nobody wants to be hospitalized. The goal is to make
the stay short and successful by remembering that ultimately
it's your life, and, in spite of perhaps temporarily
diminished capacities, you're still very much in charge.
Here are three key points:
- Read your medical chart. Ask questions if anything is
unclear. Ask for definitions of terms the staff may use, such
as NPO (noli para os, nothing by mouth). If you're not well
enough to do this, have a friend or relative do so.
- Verify all drugs given to you. Ask about oral medications
before swallowing, and read the contents of the IV bags on
your pole. If you're not well enough to do this, have a friend
or relative do so.
- Tell the nursing staff right away if something seems wrong.
Don't let seemingly simple things, like feeling constipated,
become major problems.
Additional ideas for dealing with your hospitalization:
- Move about your room and the corridors as much as possible.
You'll heal faster and diminish the likelihood of serious complications
if you move about. If you feel too bad to get out
of bed, flex your arms and legs a good deal. If you're
neutropenic, ask if you and your IV pole can cruise the
corridors wearing a mask and surgical slippers. (If you
feel conspicuous wearing a mask, you might try making a prank
of it by adding a toothy grin with waterproof ink.)
- If you've had surgery, do the physical therapy, coughing,
or breathing exercises you're given as soon and as often as
possible. Like overall body movement, these exercises will help
you heal more quickly, and will reduce the chance of
developing complications such as the form of pneumonia
that's associated with lying flat for long periods. If you
have an abdominal incision, hold a pillow against it for
comfort while you cough.
- If you have trouble getting in and out of bed after
abdominal surgery, ask the nursing staff to tie something
rope-like to the footboard so you can experiment with using
arm muscles instead of abdominal muscles to pull yourself up
and, especially, to lay yourself back down.
- If you're not on a restricted diet, coerce friends and loved
ones into bringing you your favorite foods. This will make you
feel better, and will help those friends who would otherwise not
know what to do feel useful and loving. Most hospitals now permit
outside food to be brought into the patient's room, a change more
in keeping with the European model of families caring for
patients.
- At first, take pain medication on schedule, even if you
think you won't need it, because you'll heal better and can
be more mobile if pain is adequately controlled. As time
passes, you'll be a better judge of how much painkiller you
really need.
- If you're a caretaker, pitch in and do what you can to
help the nurses help your loved one. Stay overnight if at
all possible; if the staff decline, insist.
When my husband was hospitalized after his abdominal surgery,
he was on morphine which slowed his ability to urinate. Often
during the night he needed to use the john, and he and his IV
pole would stand there in front of the toilet doing not much
of anything for ten or fifteen minutes. Because I stayed with
him overnight, I was able to help him in and out of bed
repeatedly without his calling a nurse.
Discharge may be an anticlimax after your hospital stay, but
you should use this time to have the staff answer all of
your questions about aftercare. Make sure you understand:
- First, whether you're really going to be able to handle
being at home. If you're not reasonably mobile or pain-free,
ask for additional time in the hospital.
- The medications you may be taking.
- Whether the hospital pharmacy can fill your prescriptions
before you leave. If not, get the doctor to phone your pharmacy
or get a family member to fill prescriptions beforehand.
- How to care for your incision if you've had surgery.
- What side effects or after effects you should watch for that
might signal a problem.
- What follow-up appointments should be scheduled, and
any diet restrictions.
- Your bill. Always ask for an itemized bill.
The person helping you with your trip home should bring the
car to the exit in advance, and should make as many preliminary
trips as necessary to remove your personal effects and gifts
from your room, perhaps warming or cooling the car in advance
as well. Most important, though, is that by leaving you for
last your escort can devote attention to you alone as you're
exiting. This is a useful arrangement because you may need
help getting into the car, for example, but the hospital's
assistance and liability end at the door.
Use the restroom before you leave, even if you think you don't
need to. Even a small amount of stress on the trip home, or
cold temperatures, for example, can cause the brain to signal
the bladder or bowel to empty.
Most hospitals have a regulation stating that you must be
escorted to the door in a wheelchair. This reduces the chance
that patients possibly weakened by extended bed rest will pass
out or suffer a misstep while exiting. While many people
leaving the hospital find using a wheelchair embarrassing,
it safeguards both you and the hospital. You'll have plenty
of chances to prove you're mobile again once you're out the
door.
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