Moving your care from your transplant doctor back to your primary care doctor or hematologist/oncologist is a milestone in your recovery. It’s very normal for patients to feel nervous about this important transition. Transplant recipient Elizabeth talks about her experience with this transition and transplant doctor Navneet Majhail explains how you can help make it a smooth one: “Prepare, communicate and advocate”, he says.
Gather your treatment history to share.
- The names and doses of chemotherapy or radiation therapy you received as part of your conditioning or preparative regimen before transplant.
- A record of complications you have experienced, such as graft-versus-host disease (GVHD) or infections.
- A list of signs or symptoms of post-transplant complications including GVHD.
- The names and doses of all your medicines, including vitamins and herbs.
- A list of the tips your transplant doctor recommends for you to help you stay healthy. This could include things like avoiding too much sun or doing stretching exercises.
- A list of the follow-up exams and tests that your transplant doctor recommends for you. Be The Match offers free post-transplant guidelines available in a variety of formats—smart phone app, print and online. This guide is based on expert recommendations and provides information on the recommended tests and evaluations for your follow-up appointments. You can share it with your primary care doctor.
Help your health care team help you.
“While it may be different for you, your primary care doctor will likely take care of general health maintenance, like checking for and treating heart disease or diabetes. Your transplant physician will handle transplant-specific issues (like GVHD). It’s important for your doctors to share information about your care with each other, and with you. Understanding how they will communicate can help you feel confident that you’re getting the best care.”
Questions to ask your doctors include:
- Who will manage which parts of my care? How are your roles different?
- How will the transplant center share information with my primary care doctor?
- How will my primary care doctor communicate with the transplant center?
- How will the information be shared with me?
- What should I do to keep in good general health?
- What specialists might I need, such as an ophthalmologist (eye doctor) or dentist?
“Some issues require all of your doctors to work together. One example is post-transplant vaccinations. Your transplant doctor may recommend them, but you might get them from your primary care doctor. Over time, as transplant-related issues decrease, interactions with the transplant team will decrease, and the primary care doctor will become your main health care provider.”
Which doctor should I contact first?
“This depends on several factors. For example, if it’s been many years since your transplant, you have no active transplant-related medical issues, and you have been seeing your primary care doctor for some time, it would be better to contact your primary care doctor first. When in doubt, you can contact whoever you are most comfortable with. Primary care doctors will usually talk to your transplant doctor to find out who should take care of your question or concern.”
Know your treatment history and share it
“You can make the transition smooth by knowing about your transplant treatments and potential complications. Share this information with your primary care doctor. Learn about your follow-up care after transplant. You may need more or different exams based on your experience, but guidelines are a starting point to help you talk with your primary doctor.”
I’ve already made the transition—and I still have concerns. What can I do?
“Transplant is a highly specialized treatment, and primary care doctors may not be familiar with caring for patients after transplant. Share your concerns with your primary care doctor and use the post-transplant guidelines to help you talk with your doctor. In my experience, most primary care doctors do not hesitate to contact the transplant doctor for help when needed.”
As you head back to your primary care doctor, remember: It’s okay to feel nervous—but you can help make the transition a smooth one by preparing ahead of time, communicating with your health care team, and advocating for yourself along the way.
See how others, like Elizabeth, are making the transition.
When Elizabeth made the transition to her primary care physician, she had some concerns.“I was frightened to give up the [transplant] team that helped me so much. But my transplant doctor said something to me before I left that gave me great comfort,” Learn what her doctor told her and watch the rest of Elizabeth’s story. [watch video]