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GIST Support International - Before You Go to the Hospital
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Hospital Tips: The Small Stuff Can Add Up  

by Louise Ladd, Alison Woodman, and Ken Saladin


When facing surgery most of us are apprehensive and have many questions. Those who have already had this experience—more than once—can share our advice, and answer some questions you may not have thought of.


Scheduling Your Surgery

  • If possible, schedule your surgery for early in the week. That way you should have the regular staff taking care of you during the major part of your recovery. On weekends you may find a number of new faces. Your doctor might be off, another doctor covering for him. Normally all will go smoothly, but in case of problems, it's better to recover during weekdays.
     
  • Consider requesting the first operation of the day. Your doctor and the OR team are freshest, and complications with other patients won't delay the start of your surgery.
     

Providing for Your Home

  • Suspend your newspaper. Mail can be held at the post office and delivered once you're home. If you expect to be gone long, perhaps ask a trusted friend to receive and sort your mail,  bringing urgent matters to your attention.
     
  • Pay routine bills in advance before you go; some businesses allow you to prepay, so bills that come due during your absence are already covered. Or you may want to pre-sign checks so a friend can simply fill in the amount, record, and mail it for you.  Make sure there is enough in your account to cover these.
     
  • If you are able, do any housework or chores before you leave, especially those that require bending or stretching. For example, take down vases from high places in case friends send flowers. Put anything you usually need within easy reach.
     
  • Put fresh linens on the bed and fresh towels in the bath. Nothing beats coming home to your own bed and fresh sheets.
     
  • Stock up on essentials to minimize the need for shopping after you get home. Include enough food items for your first few meals, especially those that can be heated direct from the freezer.   Buy any items you're fussy about, such as a certain brand of soap, so someone  shopping for you doesn't bring home disappointments. Ask a friend or house sitter to pick up perishables, such as bread and milk, just before you're due home.
     
  • You may find it useful to have a bell, intercom or small air horn that can be heard if you need to call for help.
     

Important Documents

  • Be sure you leave important documents in a place easily accessible to yourself or your caregiver. Include phone numbers and other contact information for your physicians and pharmacy.  It's always useful to have a list of essential people like your doctor, plumber, maintenance person, and so on, available.
     
  • Surgery may be just the occasion to prompt you to execute a Durable Power of Attorney for Health Care and an Advance Directive for Health Care ("living will"). The hospital may require that you have one in place. Power of attorney enables your designated person to have access to your medical records and act as your agent to get your medical needs met. The living will concerns what treatments you wish to receive or to have withheld in the extreme event of irreversible coma or other terminal conditions. Forms vary from state to state and can be found online. Allow time to make sensitive decisions about your health care and to get the necessary witness signatures. Keep the originals with your important papers and give copies to your physician(s), and the hospital.
     

Preparing Yourself

  • Your pre-surgical fitness will be very important to the ease and speed of your recovery. Do all you can in the weeks or months leading up to surgery to maintain good nutrition, a healthy body weight, regular exercise, and good muscle tone. These will pay off in your recovery.
     
  • Before surgery, you might be instructed to do a bowel clean-out.  Emptying the GI tract reduces the risk of surgical infection and other complications.  Follow instructions on the product carefully. For irritated, tender areas, hemorrhoid ointment is better than cream or wipes. If it is not included with the laxatives, it's a good idea to drink an electrolyte replacement product such as Gatorade or Pedialite (not red) to replace potassium.  Once you're home, stool softeners can be a blessing.
     
  • Take care of your grooming needs, as it could be weeks before you feel up to them again. Get a haircut, perhaps shorter than usual.  Because it might be difficult to bend down after surgery, trim your nails or have a pedicure, and women may wish to shave their legs.  Shampoo your hair as close as possible to your check-in time—that morning or the evening before.
     
  • Per doctor's orders, discontinue certain medications or over-the-counter supplements, particularly vitamins C and E, aspirin, ibuprofen, other anti-inflammatory drugs or blood thinners.  Some should be stopped two weeks prior to surgery.  Inform your physician or his nurse of all prescription drugs and OTC supplements you use so that you can be given instructions on this.
     
  • Be sure to have your pain medicine prescription filled before you're discharged from the hospital.  You may be given a covering dose as you leave, but you don't want to wait for someone to fill your prescription after you're home and hurting.
     

What to Pack

  • Most hospitals allow you to wear your own pajamas or nightgowns.
     
  • A robe is useful for walks down the corridor and can save embarrassment from those open-back johnnies.
     
  • Don't forget warm socks and slippers with non-skid soles. 
     
  • A bed jacket, or warm loose shirt or lightweight sweater might be welcome if you feel chilly in bed at times.  
     
  • The key words are: Loose and Comfortable. You don't want anything that binds the waist or requires a belt.  Loose sleeves are necessary because you will undoubtedly have an IV for at least a few days.
     
  • Toiletries     (Most hospitals supply a few basics, but you might prefer to take your own.)
        *    Hairbrush or comb
        *    Toothbrush and paste
        *    Cordless electric razor for men (also take cord and charger)
        *    Mirror (not only for grooming but for seeing things around your bed and table, if you
              drop them)
        *    Nail clippers, scissors, and/or file
        *    Skin cream or lotion, lip balm
        *    Glasses and case for reading and/or distant vision
        *    Earplugs, if you want to rest at noisy times
        *    A small supply of your usual daily medications, in case orders are mixed up and
              what you need is temporarily unavailable
     
  • Personal effects
       *       Address book and/or phone number list
       *       Cell phone—if allowed
       *       Note pad and several pens
       *       Mini-flashlight and/or reading light (especially if you will be in a shared room)
       *       Your house key, in case a friend without a key takes you home
       *       An inexpensive watch
       *       String, to tie personal belongings and/or the nurses’ call cord to the rail for easy retrieval
       *       Your own pillow, if desired (most hospitals permit this)
       *       Soft bed linens of your own (if hospital linens are uncomfortable for you)
       *       A purse or kit bag to keep in the bed with you, for easy access to the most
                essential items such as a notepad, pen, glasses, toiletries) and security for such
                belongings as a cell phone or iPod. Tuck it under your covers by your side, or use it
                as padding under your pillow.
     
  • Entertainment
    You may not feel like doing much at first, but if your stay will be longer, you might like to have a book, or an audiobook, a CD player or iPod, pocket radio, laptop computer, electronic games, puzzle books, and/or a journal. If you want to journal about your experience but don't feel up to writing much, consider a pocket voice recorder. Hospitals caution against bringing anything valuable however, so consider the risk of theft when you make your choices.
     

Research the Hospital Before You Go

Become as well informed as possible about your hospital before you go. Get advice from others who have been there as patients, ask the on-line support groups, ask your doctor's nurse or physician's assistant, or call the nursing station and ask the ward staff directly.  Find out about:

  • Visiting hours
  • A chair-bed or other sleeping arrangement if someone wants to stay overnight with you.
  • Availability of a room phone; policy on long-distance phone use and cell phones.
  • Private room or double room. This will make a difference with lighting, TV and other noise.
  • Noise and light conditions on the wards. Some hospitals are reported to be quiet and to give the patient complete control over lighting; others are very noisy, or may not allow you to completely darken your room.  In the latter case, your rest or sleep may depend on having earplugs, noise-canceling earphones, or a sleep mask.
     

The Hospital Staff

  • Keep your notepad close and immediately jot down any questions for your doctor that come to mind; don't rely on your memory when he or she pops into your room unannounced at 6:00 a.m. and dashes out five minutes later.  Organize your list so the most important questions are asked first.  Don't settle for incomplete answers. You might add, "Dr. ___, are there any questions I haven't asked but should have?"  A friend or caregiver can be helpful in creating your list, but he or she may not be there when the doctor drops in.
     
  • Don't allow anyone to move your bedside table out of reach, then leave the room.  Even one foot can be a chasm when your cell phone rings or you want your glasses.  Nurses need to adjust your IV, room cleaners come through, blood is drawn or injections given—no matter who moves it or why, always ask them to please replace your table.
     
  • Before any procedure or before giving any meds, the nurse or tech should check your hospital ID bracelet or verbally confirm your identity. Also, before anyone touches you, be sure their hands are washed or they wear fresh gloves.  If a procedure is interrupted, check to see that they repeat the process before touching you again.  If you're allergic to latex be sure to inform anyone wearing gloves. 
     
  • Be considerate of the nursing staff.  It's a tough job. Try to be pleasant even if you're in too much discomfort for smiles and chitchat, or you're exhausted.  At least be cooperative.  Try to learn their names; jot them on your note pad.  Buzz them only when you really need help.       
     
  • Have a friend or family member with you as often as possible.  They can fetch more ice or juice, open or close the blinds, add or take away blankets—do a lot of small chores that make a big difference to you, but are a burden to the nurses who have many other patients to tend to. More importantly, if your friend can be your advocate, he or she can make sure you get the right meds, on time, and oversee your care in many ways so you can lie back and relax, go with the flow, and not struggle to stay awake and alert when all your body wants is rest and sleep.
     

Keeping in Touch

Speedy recovery is influenced by a good attitude, and we tend to feel a good attitude is helped by contact with your friends outside.

  • If you have a large list of people you'd like to keep updated, compile a group e-mail list and provide it to a friend you can easily contact, who will forward your news to the list.  (Be sure you take your personal list of phone numbers and email addresses with you as well.)
     
  • Ask in advance: are cell phones permitted?  If not, can you use a prepaid calling card for long distance calls from your room phone?
     
  • If you want to use a laptop or handheld computer, ask if the hospital has in-room wireless internet access.  However, consider the risk of theft.  Some hospitals have computer stations you can use once you are able to walk or sit in a wheelchair for at least a short time.
     

Post-surgical Pain Management

  • You may be given an epidural during surgery and it might stay in place for a few days afterward.  Other than some discomfort from a nasogastric tube or catheter, the early post surgical days can be surprisingly pain-free.  Then you might transition to a pushbutton control for self-administration of pain meds and later to an oral pain medication.
     
  • As you adjust, remember it's important to take your medication on schedule to prevent pain before it occurs.   It's much easier to keep the pain from arising than it is to beat it down after it begins.
     
  • Before you leave the hospital, be sure you are provided with enough pain medication for your trip. You may want to take a little extra then, especially if the journey is long or bumpy.  You should also have enough for your first weeks at home.  Be sure your surgeon or his or her staff has your pharmacy contact information so they can phone in prescription changes or refills if needed.
     

Traveling by Car

  • Ask a considerate friend to drive you home, someone who is aware of your condition and will try to drive smoothly to minimize jostling and bumps.
     
  • The vehicle also matters.  If you have options, choose one with the softest suspension. 
     
  • Some patients strongly advise spending extra for an airport limousine; others found ordinary taxis to be perfectly comfortable.  An airport van that requires you to step up to a high seat, work your way back to an empty one, and sit crowded between other passengers is not a good choice.
     
  • Some patients like an elastic abdominal support garment, but others find anything that binds the abdomen unacceptable.
     
  • Your prescription may direct you to take one pain tablet, but two as needed. Your car ride may be a good time to take two.
     
  • Use a couple of pillows to help cushion the inevitable bumps; a squishy one to sit on, another to press against your stomach.
     

Traveling by Plane

  • Alert the airline in advance that you will be post-surgical.  They can provide wheelchairs or electric carts, help with security (usually taking you to the front of the line), assist with check-in, baggage claim, and give you early boarding.  Don't lift luggage or anything over ten pounds; ask someone to help. Take small bills ($1s and $5s) for tipping those who help you in the airport and during boarding. 
     
  • To validate your request, the airline may require a medical information form, completed by your doctor and faxed before your travel date.
     
  • When booking your flight home, leave the return date open. This will cost a little more, but often you cannot predict exactly what day you will be able to fly, and an open-ended ticket is less expensive than the penalty for changing a non-refundable ticket.
     
  • Consider asking for an upgrade to first class. Some airlines will upgrade medical passengers and their caregivers at very little cost, especially if you have frequent flyer miles you can redeem.
     
  • Wear loose clothing and slip-on shoes that you can easily remove at security gates; you don't want to have to untie and retie shoes.
     
  • Deep-vein thrombosis (DVT) is a dangerous condition in which blood clots form, especially in the legs. They may break loose and lodge in the lungs. The risk of DVT is increased by age and long periods of immobility, such as bed rest and long airline flights.  If you meet these criteria, wear compression hose to help prevent DVT.  During your flight, get up once an hour and walk the length of the aircraft.
     
  • Place a pillow or folded airline blanket between the seat belt and your abdomen for added cushioning.
     
  • If you expect a bumpy landing, brace yourself with feet flat on the floor and elbows on the armrest.  Rise slightly in your seat at the moment of impact. 

    
We hope you find this helpful. Sometimes it's the small stuff that can make a big difference.

                                                              ~~~ Louise Ladd, Alison Woodman, and Ken Saladin
 

 



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