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Living Now: Survivorship care plans for transplant recipients

A Survivorship Care Plan is a record of all the treatments preparing for, during and after transplant, and what follow-up care you need to stay healthy. They keep your recovery on track by helping you coordinate your health care between doctors, nurses, social workers, and others that you’ll see after your transplant. 

“Survivorship Care Plans are helpful when patients transition back home after transplant,” says Angela Woods, MSN, APRN, ACNP-BC, Nurse Practitioner for Be The Match. “They help you know what to watch for in your daily life and what to talk about with your care team,” she adds.    

What should a Survivorship Care Plan include? 

A Survivorship Care Plan is your personal tool ─ tailored just for your specific needs ─ to help you keep track of your health care information in one place. According to Angela, a Survivorship Care Plan for transplant recipients should include: 

  • A summary of transplant history 
  • A detailed plan and schedule for ongoing care 
  • Contact information for your health care team 
  • Tests you may need
  • Signs and symptoms to watch for

How to use your plan 

It is important to share your Survivorship Care Plan with your primary care doctor as well as any other specialists involved in your after-transplant care. This will help everyone communicate with each other. 

Take your Survivorship Care Plan with you to all your visits with doctors and nurses. Use it as a reminder to ask questions, take notes, keep track of test results, and write down next steps.  

“We strongly feel that empowering patients with knowledge and information will facilitate their survivorship care,” says Navneet Majhail, M.D., M.S., leader of the research study and director of the Blood and Marrow Transplant Program at the Cleveland Clinic Taussig Cancer Center. 

It's also important to share your care plan with your caregiver. They can help you coordinate appointments, ask questions and notice symptoms that you may not.  

If you don’t have a Survivorship Care Plan 

Your doctor or care team should give you a plan when you finish your transplant. If you don’t have one, ask your transplant doctor or care team. Be sure to ask your doctor about anything in your Survivorship Care Plan that you don’t understand. 

Keep in mind, if your transplant was many years ago, your plan might need updating. Doctors may know more now, and medical guidelines may have changed over time. Ask your doctor to review it and update if needed. 

How Be The Match can help 

You can also use our free after-transplant care guides to help keep your recovery on track. The guidelines have information on the recommended tests and exams for your 6 and 12-month checkups after transplant.

The guidelines are available in a free mobile app, online or print. There’s a version for your health care team, too. Bring a copy of your care guide with you to your next appointment.