If you have sickle cell disease, a pediatric (childhood) hematologist is probably directing your medical care. That doctor and the hematology team have been there to support you and your family. They’ve been there if you had a fever and needed to stay in the hospital or had pain that was too severe to be cared for at home.
Sickle cell disease will be with you throughout your life, in some way or another. As you grow older, you will have questions about how it may affect you in the future. Now is a good time to start looking into “transitioning” from your pediatric specialist to doctors who treat adults.
What is transitioning?
When doctors talk about “transitioning,” they mean safely shifting a patient’s care from a pediatrician to an adult medical practice. But who takes care of you is just one part of transitioning. Transitioning also means learning how to take charge of your own health and manage every aspect of your care, from handling insurance forms to understanding and making decisions about treatments.
Your parents have probably played a big part in your medical care, and that’s great. But after you turn 18, they may not be able to see your medical records or talk about your health with your doctor — even if you want them to.
Your medical team should be able to guide you in the transitioning process, but here are some good things to know.
How to prepare
Adult care centers are very different from pediatric offices. The biggest change is often the amount of input and responsibility you’ll have. As an adult, you’re expected to take charge and have more responsibility.
It helps to get ready by being more involved in your health care right now now. Experts recommend that teens take steps to learn about their medical care around age 13 or 14. Here’s where to start:
- Keep track of your appointments.
- When you arrive at the doctor’s office, check in at the window yourself (instead of relying on a parent or caregiver to do it).
- Keep a list of your current medications and update it when there are changes.
- Refill your own prescriptions.
- Know your medical information, like any food and drug allergies you may have.
When to switch doctors
Most people have to go to a medical practice for adults somewhere between turning 18 and 21. Often, your children’s hospital or doctor’s office will have a policy on the age at which they can no longer see patients. This cutoff age might be so fixed that you can make an appointment with your current doctor for one day but not be allowed to make one on the next day. The best time to start seeing adult doctors is well before you hit this cutoff age.
Ask your doctor to recommend an adult hematologist (and any other doctors you need to see) and make appointments with these new doctors at least a year before the date your current doctor will have to stop seeing you. That way, if you have questions or if something doesn’t feel quite right, there is time to go back to your pediatric doctor for help making your transition.
What to expect from your new hematologist
Adult hematologists expect their patients to know more about sickle cell disease than you’re probably used to. Obviously they won’t require you to know all the medical information. But they will assume that you know what to do when it comes to living with sickle cell disease.
For instance, your adult hematologist will expect you to know:
- what to do when you’re running a temperature
- what medicines to try for mild and moderate pain at home
- how to stay well hydrated
- when to go to the office, a sickle cell treatment center or the ER
Each patient with sickle cell disease is a little different, so discuss these topics with your pediatric hematologist before you move on to adult care.
As you meet with your new adult hematologist, you will need to discuss your bloodwork schedule and other routine testing. Most of the time, adult patients with sickle cell disease will:
- see the hematologist every 6 to 12 months
- see an eye doctor every year
- need pulmonary function tests (PFT) once as a teenager and once as a young adult (if you have asthma, you might need PFTs more often)
- get screening labs and urine studies every year
- possibly need imaging studies done like X-rays, MRIs or ultrasounds
Where to find info about adult hematologists
Your pediatric hematologist is probably the best person to ask about adult hematologists. Your current doctor will have lots of previous patients who have graduated to adult care and can point you in the right direction.
Maybe a member of the hematology team can go with you to your first adult appointment. Or perhaps the adult hematologist can join you at your last appointment with your pediatric hematologist. If this is something you’re interested in, talk to the medical team and see if it can be arranged.
What about other doctors?
If you’re living with sickle cell, you’ve probably seen a specialist at some point — like an ophthalmologist or pulmonologist. If he or she is a pediatric doctor, you’ll need to transition to an adult specialist. Your current specialist and your hematology teams (both pediatric and adult) can recommend new specialists and help you make the transition.
No matter how well a person prepares, there will always be a few unexpected questions and bumps in the road. That’s OK — transitioning to adult care is a journey, not a single leap. The important thing is to make sure you’re always covered. So start thinking about transitioning when you’re in your mid-teens.
For more information on Sickle Cell Disease, visit our Health Library.