Being a Good Patient
Jenn and her husband, Greg, in Scotland.
I have been on home parenteral (or IV) nutrition (HPN) since 2004, when I was diagnosed with profound gastroparesis. I was also on home enteral nutrition (HEN, or tube feeding) for a short time. I had both a G-tube (for decompression) and J-tube (for medications) for over four years. In August of 2010 I had a total gastrectomy, as my gastric tube sites were chronically infected—a constant threat to my HPN central line. Despite the gastrectomy, a combination of further health and dysmotility issues means I am a permanent HPN consumer.
This article contains some of the wisdom I’ve gleaned about being a good patient.
Know your body. Listen to it carefully so you know when something just doesn’t feel right, because only you can know. Practice putting into words what doesn’t feel normal.
Particularly for HPN patients: never postpone getting evaluated and/or treated for a fever, especially if it is accompanied by shaking chills. If you have a fever, call the doctor who manages your HPN; he or she will order blood tests and blood cultures to decide if an emergency room visit is appropriate. Many doctors recommend 101° or 101.5°, but waiting for a temperature to spike that high may be the difference between a central line infection with septicemia (widespread bloodstream infection) and the onset of septic shock, which is life-threatening.
I’ve never been dismissed as melodramatic or overly cautious for visiting the emergency room with a fever of 100.5°, and since many alternative-nutrition patients are subject to lower average body temperatures, 100.5° can be a significant fever. For instance, my normal body temperature hovers around 97.2° to 97.6°; comparatively speaking, that would equate to a person whose normal temperature is 98.6° having a fever of 101.1° to 101.5°—high enough to warrant a visit to the ER.
Take Care of Skin
For HEN patients, take gentle care of all tube sites. Don’t wait until there’s a problem before paying attention to them. Skin breakdown and infection can spread rapidly and/or turn into something worse (cellulitis, peritonitis, and so on). Keeping tube sites protected with a barrier cream helps; mix in some lidocaine 2% gel or EMLA cream, and you’ve got anaesthetic plus moisture barrier. Anything unusual that might indicate a problem should be watched carefully and a doctor or home health care nurse contacted if necessary.
Keep a current list of your allergies and medication regimens. The patient travel/hospital packet on the Oley site is by far the best way I’ve found to keep my medical information current (download it here) or request a copy by phone, 800-776-OLEY). In addition, I keep a current copy of my medication regimen, including all medications with correctly spelled names (both generic and patented/trade names), dosage, route (IV, J-tube, or oral), indication, and frequency/PRN, as well as a list of all my doctors, their specialties, and their phone numbers.
While many medical centers (associated hospital and outpatient clinics) ostensibly share a single medical record/medication list for both inpatient and outpatient visits, I’ve rarely found this to be accurate. I’ve found that the Oley form as well as my personally kept lists of medications and doctors drastically reduce the time it takes for the medications and specialists I need to be on hand when I need them, should I be hospitalized. This information is especially crucial if you need medical help while out of town.
Prepare a bag for when you may be hospitalized. Include a current copy of all your medical information (as recommended above). Consider including your own bathrobe; a pair of non-skid socks or slippers; your own pajamas (many hospitals allow patients to wear their own clothing); travel-size toiletries (let’s face it—hospitals are not handing out Bath and Body Works™ samples for their soaps and lotions); a small blanket or quilt that will make your bed a little more homey; and anything that might help pass the time.
Find a Good Doctor
Find a primary care physician (PCP) whom you can trust and with whom you can be blatantly honest. If your doctor doesn’t meet your needs, give you enough time to address your concerns, or seem capable or willing to manage the complexities of your condition(s), find one who does. My PCP gives me a double-time appointment (my medical chart notes that all appointments are double slots), and we meet every six weeks no matter what, with in-between visits as necessary. This way he can keep up-to-date with all of my issues and make med changes, referrals, and recommendations whenever necessary. [Editor’s note: If you are a well-established HPN patient and you don’t have any known problems, you won’t need to meet with your doctor so frequently. For the first six months on HPN, a visit every six weeks is appropriate; for the second six months, a visit every eight weeks should be OK; and after a year on HPN, if you aren’t experiencing any problems, a visit every three or four months is reasonable.]
Be assertive and truthful with your health care providers so they can thoroughly partner with you. Even if you aren’t 100 percent compliant (is anyone?), be honest. A good doctor will understand that sometimes circumstances necessitate a change.
Prepare for all appointments with physicians, PAs, ARNPs, nutritionists, etc. Keep a running list of concerns to discuss at your next appointment and write your questions in advance. I have a small notebook dedicated specifically to questions for my medical team, and I carry it to all my appointments, with a pen to write down the answers. Don’t be afraid to ask questions. Remember that you are not inferior just because they are authorities in their fields of practice. You are the captain of your medical team; the health care providers are all parts of your team, but you’re the one in charge. Just remember you’re working with a team of people—sometimes many people—and each one is human and therefore capable of making errors in judgment, seeming insensitive, or making a mistake. Your responsibility is to rally the team together as cohesively as possible, and make sure you’re a part of all the decisions being made.
Know Your Diagnosis
Educate yourself about your condition(s). Being educated about your health doesn’t just help you; it helps those who are helping you. When I was first diagnosed with gastroparesis, I went online and found G-PACT and a Yahoo! forum. I also found several medical sites that offered current information about treatments and clinical trials for medications and medical technology, including a motility medication available in Canada and a device that was being tested in diabetic patients with gastroparesis.
Likewise, when I found out I had severe osteoporosis, hyperparathyroidism, and a rare sleep disorder, I educated myself through my doctors, the Internet, and printed resources to make sure I could knowledgeably discuss issues with my multiple specialists. By researching my conditions, I am able to meet my doctors with information and educated questions, which (while saving time) aptly conveys my intention to be a part of the decisions being made about my health care. [Note: Not all resources are accurate and reliable. Be selective about which resources you trust.]
Be a good hospital patient. No one enjoys being sick or hospitalized, but you can make it easier on yourself by making it easier on the staff. Call your nurses and assistants by their names. Say “please” and “thank you.” Ask for medications in advance, so the staff has time to get them before it’s urgent. Nurses are incredibly overworked, and can often seem insensitive. Think of a way to encourage them while they take care of you—you’ll be surprised how far fundamental good manners and a compliment can go. Also, ringing the nurse call every thirty minutes doesn’t endear you to the nursing staff. If possible, wait until you have more than one reason to call for assistance—it can radically minimize the time they spend traveling in and out of your room.
Understand Your Insurance
Learn the ropes of your health insurance, your hospital/health clinic, and home health care support. Educating yourself makes everything move more smoothly. When you find a good customer service representative with your insurance provider, ask for his or her name and extension, and use him or her as a contact whenever you have a question. This allows shorter calls and streamlines the process when issues arise.
Likewise, find out how you can best provide your home health care agency with your supply request (if needed). I asked my suppliers what would be easiest, and now I send them an e-mail every Monday with an attached document form I created that lists anything I could possibly need and in what quantities. This way they don’t have to chase me down, and all I have to do is plug numbers into my request form. It may take a few minutes to make an original document, but overall it saves time and trouble for both you and your supplier.
Choose to be a person with chronic illness, not a chronically ill person. Your illness is not your identity unless you let it be—and that’s the fastest route to loneliness, isolation, depression, and frustrated/exasperated physicians. Be you—an ordinary person whose health may not be ordinary, but who has chosen to be courteous and positive in the face of extraordinary circumstances.
Live up to your limitations. Be wise and use common sense, but don’t stop living! My husband and I have spent six days rafting the Colorado River in the depths of the Grand Canyon; traveled to Scotland; cruised; traveled nationally; and will be returning to Scotland to celebrate our fortieth and fiftieth birthdays—all with HPEN. I may be somewhat fragile health-wise, but I’m going to enjoy everything I can while I am able.
Traveling may be more complicated when HPEN is a factor, but don’t let embarrassment or other concerns stop you. Airport personnel are usually very understanding and discreet if you are courteous and offer information about any carry-on items that may be on the restricted list. Be sure to carry a letter from your doctor and/or your home health care agency; request it in advance to give them plenty of time to prepare it (many home health care agencies have a form letter you can personalize for such occasions). Also, medical supplies shouldn’t be considered baggage; contact your airline in advance for instructions about how to avoid extra luggage charges.
Never stop learning…
LifelineLetter, January/February 2012