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Being Prepared
Since your new organ could come at any time, you want to be ready. This doesn't mean that you have to sit at home waiting by the phone. In fact, it is best for you to go on with your usual activities and enjoy your life. But there are some things that you can do ahead of time to prepare. A little planning can help things go more smoothly when the time comes for you to get your new organ.
This checklist may be helpful:
- Give your transplant team a list of telephone numbers where you can be reached 24 hours a day. Include phone numbers of friends and family that you might visit. Your transplant team will need to contact you as soon as your new organ is available.
- Check your answering machine or voice mail often. If you are at a place where you cannot be reached by phone, it may be a good idea to check more often. You may want to carry a cell phone or beeper once you get to the top of the transplant list. Your transplant team will let you know when this time comes.
- Make a list of things you will want to take to the hospital. When the day arrives, you may not have time to pack, so you might want to pack a bag ahead of time.
- You may want to bring some family photos, books to read, and the phone numbers of people you will want to call.
- Make plans for how you will get to the hospital. Arrange for someone to drive you. Talk to your transplant coordinator if you will need to take an airplane.
Review the rest of this section to learn other strategies for success: get financially ready, stay positive, get educated, get support, learn to relax, stay active, keep in touch
Get Financially Ready
Your transplant center has people available who are specially trained to assist you in financial matters. You can also visit our financial resources to learn more about how to financially prepare for transplantation and how to maximize your reimbursement.
Stay Positive
As you prepare for your new organ, your emotional health can help keep your body healthy, too. Managing the stress and anxiety that come from waiting is very important at this time. There are many different ways to deal with stress. The important thing is finding the best way for you.
Get Educated
Just knowing what to expect helps some people feel better. That is one reason why it is good to learn as much as you can about your transplant. Don't be afraid to ask your transplant team a lot of questions. Talk to people who have had transplants. Read everything you can about the surgery and the medicines you will be taking and take time to look over the Frequently Asked Questions. Other good sources of information include your public library and your local bookstore. You may also want to look over the support resources included on this site. There you'll find some great organizations, many of which provide information online.
Get Support
Support groups can help you talk about your feelings, such as worries about the surgery and concerns about the future. Some people find it helpful to talk with others who are waiting for transplants or who have already had transplants. Visit the Support Group Locator to find a support group in your area.
Many people in your situation feel nervous or depressed. In fact, these feelings are so common that many transplant centers have a psychologist or a social worker on the transplant team to help you with any issues you may need to discuss. They may also be able to talk with you and your family members together.
Remember that this can be a tough time for your family and friends, too. Even though you are the one getting the transplant, they may need help with their feelings. You may want to share these tips with them and encourage them to visit this site. TransplantExperience.com has a section dedicated just to caregivers called the Caregivers' Connection.
Learn to Relax
Waiting for a transplant can be stressful. If you are having trouble sleeping or feel anxious about the transplant, ask your psychologist or social worker to show you exercises and techniques to help you relax. There are also many books and audiotapes on relaxation that can help you deal with stress and anxiety.
It may be helpful for you to find a creative outlet. Enjoying a hobby such as drawing, painting, or knitting can help take your mind off waiting and may help you relax. Reading and listening to music are also recommended relaxation techniques.
Stay Active
Some people manage stress by staying active. If you are able, you may want to follow a daily exercise program. Your transplant team can help you decide on a program that meets your personal needs. You can also stay active by keeping busy with your family and friends. Keep doing the things you have always enjoyed, as much as possible.
Always be sure to speak with your doctor before starting or changing your exercise routine.
Keep in Touch
The waiting time for an organ can range from several days to several years. Ask your coordinator when you should return for follow-up visits. Also be sure to give your transplant team your contact information and keep it updated so they can reach you when it's time for your transplant. In addition, notify your transplant center if any complications arise, including infections, blood transfusions, or any other hospitalization.
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