Protecting Your Long Term Health
You have been through a transplant. From this moment on, there will be a change in the relationship you have with your health. It is important to get involved in your heath care in ways you never did before.
The good news is that many transplant survivors say their experience taught them a lot about what their bodies and minds are capable of doing. There will be setbacks along the way, but by focusing on protecting your health over the long term, you will find you can enjoy a second chance at life.
The Center for International Blood and Marrow Transplant Research has developed post-transplant guidelines for patients and doctors that cover most of the necessary tests and procedures you will need to follow over the course of your recovery, and many years after. These will help detect side effects that may appear many months or even years after transplant. Some can be mild, others more serious. The guidelines will help your doctors detect problems early so they can be promptly treated.
You should follow these guidelines even if you are feeling healthy. The tests or procedures recommended are not painful or time consuming but can help prevent serious complications.
In all cases, consult with your medical team about which guidelines are right for you.
We suggest you view our recent Protecting Your Health Long-Term webcast for a discussion of some of the more common complications following a transplant. If the survivor is a child, view How to Protect Your Child's Health Long-Term.
For the first year after transplant, you will be put on a number of medications to prevent or treat complications, and aid your recovery. Keeping track of which medications to take and when to take them can be a challenge.
MyMedSchedule.com is a free service that helps you manage your medications. This easy-to-use online program allows you to create a schedule of all your medications, and print it out. It also sends you reminders when a prescription may need to be refilled.
Taking Charge of Your Health
For the rest of your life, it is vital that all of your medical providers know about your diagnosis, transplant therapy, specific procedures that were performed and medications that you received throughout the process. Your doctors can help prevent complications and manage your health better if they know your medical history.
When you leave the transplant center, ask for a copy of your medical records that include information about the type and amount of chemotherapy and radiation you received, any complications you developed and any medications or procedures that might affect your health down the road. Keep these records in a safe place: you or your doctors will need to refer to them often as you move through life.
You should also keep any notes or journals that you wrote during your treatment and recovery as they may have important information that may be useful as the years go by. Many survivors have these records stored electronically on a zip drive or stored in a computer.
If your child was the transplant patient, be sure to pass along a copy of these medical records as they move into young adulthood or leave for college. Young adults often do not realize the importance of knowing their full medical history and how it might impact their long-term health. In fact, if they received their transplant as a young child, they may not remember the procedure at all.
In most cases you will be referred back to your family physician, local oncologist or local hematologist following your transplant. You may be asked to return to the transplant center for annual check-ups, but it is the doctors in your community who will be caring for you. All of them including your dentist, ophthalmologist, other specialists and any other provider of health or wellness care need to know your complete medical history.
Physicians can always contact your transplant center if there are questions concerning your care. You also can contact your transplant center if you have a health issue related to your transplant or a question about the care you are receiving.