Photo by Kevin Dowling on Unsplash
Does anyone get through the holidays without feeling overwhelmed?
There’s always one more gift, one more event to attend and one more task around the house that must be done before the big day. If you have a chronic illness and need infusion therapy, that adds to your to-do list. You want to stay healthy, make your doctor appointments and keep up with treatments, but it’s not easy to fit everything in.
We asked patients who are living with primary immune deficiency, hemophilia and a lung disease called Alpha-1 antitrypsin deficiency to give us their best holiday advice. We also checked in with infusion nurses to ask how patients can stay on track during the most wonderful – and often busiest – time of year. Here’s what they said:
Grab and go with Lynne
Patient Lynne Doebber says being organized helps her manage her illness all year, including during the holidays. She has common variable immune deficiency (CVID) and needs weekly immunoglobulin treatments.
“Before December, I’ll make my grab-and-go bags,” said Doebber, who’s semi-retired in Asheville, North Carolina.
What’s a grab-and-go bag? Doebber uses gallon-size plastic bags to organize all the supplies she needs for each subcutaneous infusion, which she has been trained to do at home. In go the syringes, needles, medicine and other items needed to complete the once-weekly treatment. She labels the bags “Week 1,” “Week 2,” etc. and stores them in a special cabinet. (A medical note that if others want to try Lynne’s method, they should first check that their medicines can be stored at room temperature.)
“It’s all right there and I don’t have to search for anything,” Doebber said. “I can get right down to business.”
Extra reminders help in busy times
Like Doebber’s grab-and-go bags, planning and organization strategies can be useful all year long, says Mary Hintermeyer, a nurse practitioner who specializes in managing patients on immune globulin therapy in Wisconsin. When life gets busier at holiday time, it’s good to have extra reminders about when infusions are scheduled, especially if a patient must make it on time to a clinic appointment or be there when a nurse makes a home visit. Troubleshoot your calendar in advance so you reserve the time needed for an appointment or at-home infusion, she said.
Aidan Walsh is only 16, but he’s already a pro at managing the infusions he needs for his immune deficiency. He reserves Sundays for infusions, but he sometimes has to reschedule because of holiday events.
“Recently I added monthly reminders to reorder my medication from my specialty pharmacy because, with everything going on around the holiday, I was afraid it would be easy to forget,” Walsh said.
Hintermeyer recommends using alarms and reminders on cell phones, but says low-tech methods also can be effective. Leave yourself a note or reminder on the bathroom mirror and tell a significant other when you need to do your next infusion, so your partner can give you a heads-up.
Subcutaneous infusion, often done at home on the patient’s own schedule, offers great flexibility because the patient can do the treatment when it suits, Nebraska infusion nurse Laura Rohe said. But one challenge is that, without a specific reminder on the calendar, a patient might miss a needed infusion.
“It can be harder for people who infuse on their own to be disciplined enough to stay on schedule,” Hintermeyer said. “That is why a partner to help them stay on track is so important.”
But what if the patient is a child? Lori Kunkel, who has three grown sons and now a grandchild with a bleeding disorder, says the happy chaos of holiday time can present challenges for parents of kids with serious medical issues. She remembers, years ago, the time her son took a tumble during a holiday party.
“The holidays are busy and there may be additional people in the home,” she said. “It’s critical to not lose your focus of what you would normally do in your home or with your treatment regimen.”
Take care of Y-O-U
No one wants a cold or the flu at holiday time, so work hard to stay well, several infusion nurses said. It’s best if the patient and everyone in the whole family checks with their doctors to get appropriate vaccinations for increased protection. Regular hand-washing and hand sanitizing are a must, Rohe said. Also try not to touch your face to prevent the spread of illness.
Walsh, who’s in high school, tries not to sit near people who are coughing and sneezing. He also said he avoids touching public surfaces like door handles and uses his shoulder to open doors.
Patient Richard Lovrich, of upstate New York, agrees that you should avoid germs, but he says he takes a balanced approach around the holidays.
“Be cautious, but do not avoid the things and people you enjoy. Take reasonable precautions and relax,” said Lovrich, who has Alpha-1, a lung disease that causes breathing trouble.
In addition to germ avoidance, Rohe recommends taking good care of the body through rest, nutrition and exercise.
“I think it is extremely important to get enough sleep and eat well,” she said. “Exercise is wonderful for the immune system and I encourage all our primary immune deficiency patients to try and exercise several days a week. It is so beneficial for the body and mind.”
Lovrich also emphasized the importance of exercise, especially in winter, when most of us are less active. He’s a committed cyclist and finds a way to keep physically active even during the colder months.
“It seems impossible at first and later as well, but we must strengthen ourselves. In short, ask Santa for a treadmill or bicycle trainer,” Lovrich said.
Be active, but also listen to your body, several patients recommended. Walsh, who’s busy at school with golf team and Scholastic Bowl team, said he’s already learned this.
“My parents and I try to make sure I am healthy enough to do anything I want to do, but when I need to set limits and take breaks, my body lets me know that,” he said. “Sometimes, I just need a day of rest.”
Doebber very much agrees that self-care is important when you feel crazy-busy. That means accepting she has to say no sometimes. You probably can’t do it all, she said. Instead, slow down and make time for what you truly enjoy.
“Unplug. The holidays are supposed to be enjoyed, not dreaded,” Doebber said. “Try to celebrate and treat yourself to a cup of tea.”