Taking your medicines as directed after transplant is important for your health, but it’s not easy to do.
Calley and Greg, both transplant recipients, knew that taking their medicines correctly and on time was very important. We talked with Calley and Greg to find out what worked for them.
Ila Saunders, PharmD, BCOP, sees many of the struggles people have managing medicines after transplant. We also talked to Ila to get advice from her on behalf of the Advocacy and Policy Working committee of the American Society for Blood and Marrow Transplantation (ASBMT) Pharmacy Special Interest Group.
Consider the following tips, and pick which ones work best for you.
Tip 1: Use a pill case that fits your needs
Depending on your health and treatment plan, decide whether a daily or weekly pillbox is best. Sometimes after transplant people have prescriptions that change frequently. This may be especially true in the first few months after transplant, or during treatment for complications such as graft-versus-host disease (GVHD). If your prescriptions are changing often, then a daily pillbox may be best. “You have to fill a daily pillbox every evening and you’ll be better organized when there are frequent changes to your medicines,” Ila says.
Calley had her transplant 2 years ago and now she uses a large weekly pillbox. She says this is the main way she keeps track of what medicines she needs to take. “The pillbox I have is larger than a normal one – it’s actually bigger than a standard size piece of paper. With that, I’m able to plan on filling it weekly on Sundays, and then I don’t have to worry about remembering which pills to take when during the week. This also helps to plan when medicines are going to run out. I call the pharmacist on Monday if I know that my prescription will be finished by the end of the week.”
Though it’s convenient, there are risks with a weekly pillbox. “I have seen one too many weekly pillboxes pop open. Then it’s hard to accurately identify each medicine and put it back in the correct location,” warns Ila.
Tip 2: Create a color-coded chart or system to keep track of doses and symptoms
Many people find it helpful to keep a list of all their medicines for reference. A medicine list can also be a useful way to chart and keep track of your pills. These lists may include the dose, the time and date a pill was taken, and any symptoms you have.
After Greg’s transplant in 2009, he left the hospital with nearly 30 pills to take each day. To help him manage all of the doses, he kept a binder full of spreadsheets that he would fill out and follow. “In the spreadsheet that we created, I would include spaces to check-off a medicine after I took it. I found it to be like a little success each day I could look forward to.”
Tip 3: Get help from others
There’s a lot to keep track of after transplant. Having someone to help you organize your medicines can take pressure off of you while you’re recovering. Ask your caregiver or other loved ones for help organizing your medicines, and taking them according to your doctor’s instructions.
Your transplant team can also help. For example, your transplant pharmacist can help you learn about your prescriptions, organize your pillbox, and give you a list of all your medicines. “Use a team approach! Use a system that works well for you and your loved ones. This can take the burden off of you as you recover,” Ila says.
Tip 4: Ask questions
There’s a lot to learn about your medicines. When you’re talking with your doctor or pharmacist about a new medicine, many people ask what the medicine is for and how much they have to take. You may also want to ask how to store it, if you should take it with food or not, and what to do if you miss a dose.
“I think that one of the biggest pieces of advice I could give someone is to listen to your body. If something feels off, don’t ever sit on it – there more than likely is something the doctor or pharmacist can do to either help or ease your mind,” Greg suggests.
Need more tips for managing your medicines? Talk to your doctor or pharmacist. Or call the Be The Match® Patient Support Center, which provides support, information and resources for patients, caregivers and families before, during and after transplant.