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[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.

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.

Preparation

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

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 staff

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.

Thriving versus surviving

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 and departure

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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