Tips on hospital stays from people who've been there

During the course of a long career in communications work at MIT, Janet Snover has shown a propensity for turning her private pursuits into projects that benefit the larger community. From her love of gardening emerged MIT's community

gardening group and annual plant swap. From her personal notes on Institute-specific acronyms and abbreviations grew an online guide to the "alphabet soup" of terms used at MIT (http://web.mit.edu/acronym/). So perhaps it's not surprising that Snover has turned what she calls her "ongoing medical adventure" with brain cancer into an effort to help others in the community benefit from what she has learned about navigating the healthcare system and surviving repeated hospital stays.

Other than a childhood tonsillectomy and minor surgery to remove a benign cyst while in college, Snover's experience with hospitals had been blessedly limited before a grand mal seizure in October 2005 plunged her into the labyrinth of the healthcare system beyond MIT Medical. Within days, she underwent an emergency craniotomy to remove a large mass in her brain. Over the next year, she endured two additional major surgeries. Her oncologist, surgeons, and anesthesiologists did a good job of explaining the technicalities of these operations, Snover said, but nobody prepared her for the practical aspects of managing multiple hospitalizations.

"Being in the hospital after my two emergency surgeries taught me a lot about what I needed to have with me," Snover said. "I also considered how I'd prepare for a scheduled operation if I needed one, which eventually I did." Just as she'd started keeping track of MIT acronyms so many years earlier, Snover began making mental notes about what she was learning. And before long, her mental notes had turned into a written list of "hospital tips" she could easily share with friends and colleagues facing similar challenges.

Before you are hospitalized

When facing a scheduled hospitalization and elective surgery, Snover suggests a number of things you can do to prepare for your hospital stay and convalescence. First, she says, get things in order at home, so you can fully concentrate on your recovery later. "Try to get caught up on household chores, and pay any bills that will come due soon," she recommends. "Stock up on nonperishable foods, and, if you have the time and freezer space, buy or prepare some meals you can keep frozen until your return from the hospital."

Snover also recommends making specific plans for notifying friends, relatives, and colleagues after your surgery and keeping them posted on your recovery. "You can prepare email messages that a friend or family member can send out to lists of pre-specified recipients," she notes. "That cuts down on the number of phone calls or individual emails that would otherwise be necessary." She also suggests using your voice-mail message in the office to provide periodic updates. "That way, friends who want to know how you are doing can phone in to hear the message rather than waking you up with a call to your hospital room. And people who want to get in touch with you can leave a message at that number, allowing you to phone them at a time that's convenient."

If hospital policy allows cell phone use, Snover recommends programming extra phone numbers into your phone, so you'll be readily able to contact anyone you might need to speak with. "And don't forget to bring your charger!" she adds.

Keeping track of information

Anyone facing a serious illness or major surgery will be bombarded with information, and keeping track of everything you need to remember can be a major challenge-especially since you won't be feeling your best. For dealing with information overload, Snover recommends paper, pen, paper clips, and reliable family members or friends.

"When I went to the hospital, I packed a spiral notebook, pens, a pad of Post-Its, and a couple of bulldog clips," she recalls. Snover used the notebook to record information from caregivers, as well as her own questions and concerns. Post-It notes stuck to her tray table served as reminders of things she wanted to discuss with clinicians, and the clips came in handy for reining in appointment cards. "I would have gone crazy without the ability to write down questions, answers, and concerns in an organized way," she says.

In addition to taking your own notes, a back-up memory, in the form of a friend or relative, can be invaluable, says Snover's colleague, Lily Burns, who had open heart surgery in 2006. "I tried to bring another person to almost every medical appointment, in case I forgot to ask something," she says.

As a source of additional information, Burns emphasizes the usefulness of talking with people who have had similar procedures. "Other patients were my best source of information on the aftermath of my surgery," she notes. "For example, my doctors didn't tell me I would gain five to 10 kilos or might need insulin shots following open heart surgery; I learned that from other heart-surgery patients. And doctors almost never talk about the emotional side effects of surgery, which can be worse than the physical effects." Burns was the first person with whom Snover shared her hospital tips, and says Burns, "Janet was one of the best people to talk to, because she knew what I was going through."

In the hospital

Snover's tips include a number of suggestions for making the actual hospitalization as comfortable as possible. One is to bring your own pillow-and put it in a distinctive pillowcase, so the hospital housekeeper will know it's your personal property and you'll remember to bring it back home with you. "Of course, a Post-It 'pillow reminder' won't hurt either," she laughs. She also recommends bringing earplugs or headphones to block out as much background noise as possible. "Hospitals are incredibly noisy places," she comments, "even in the middle of the night."

"Don't be afraid to speak up for your needs," adds Burns. "For example, the room is important to me, so the last time I was in the hospital, I asked for the bed by the window. It doesn't hurt to make those kinds of requests."

"You will invariably need to ask for changes in medication, adjustments in the routine, information, and other things the overworked nursing staff won't think to provide without a specific request," agrees a hip-replacement patient, who asked not to be identified by name for this article. "I found it invaluable to have someone with me as much as possible, day and night, to be an advocate and help me make decisions about the inevitable dilemmas I was too drugged to handle well-things like how to get effective pain management."

With a little help from your friends.

Snover has always been a "go-to" person for her Institute colleagues. However, since her diagnosis, she's been grateful for the assistance she's received from others. "Let family, friends, and neighbors help you with errands, food preparation, rides to follow-up medical appointments, and other tasks," she emphasizes. "This is one of my 'top tips.' People who care about you want to help, and they'll feel better if you let them do so in whatever ways they can."