- Make a list of important phone numbers. Share the list with the entire family. Include names and numbers of your health care team and caregivers.
- Write down important information about finances. Tell your caregiver where you’ll keep this information.
- Ask your bank what you need to do so your caregiver can handle certain transactions for you.
- Plan how your bills will be paid while you’re in the hospital and during recovery.
- Ask for help with household chores and other duties.
- If you have children, set up schedules and make plans for how they’ll be cared for while you’re away. Tell your children and others involved about the plans you make.
- If you’re the only one who can allow medical care for your children, provide a medical release that gives permission to your caregiver or another person you trust. Ask your children’s doctors to give you a medical release form.
Before leaving home
- Ask your doctor how long you might need to stay in the hospital and how long you might need to stay near the hospital.
- Make a packing list. Bring clothes for different temperatures and seasons, if appropriate. Include some family photos or posters to brighten your hospital room or temporary living space.
- Get phone numbers, email addresses and mailing addresses of people you want to stay in touch with.
- Arrange someone to take care of your home or apartment (and any pets) while you are away.
- Think about how bills will be paid. When possible, pay ahead. Check with your loan companies (such as car or student loan) about temporary deferment of payments (grace period) due to medical disability.
- Have your mail forwarded or have someone collect it for you.
Plan for being away from work
- Make plans with your employer for being away from work. Talk to your Human Resources (HR) representative to help you understand your benefits. Ask about any requirements to keep your health insurance and other benefits active.
- Ask HR about: COBRA insurance, Family Medical Leave Act (FMLA), short and long-term disability plans, and employee assistance programs.
- Ask your disability representative to help you apply for Social Security Disability (SSD)
Discuss faith and spirituality
- Set up a time to talk with your family about what each of you believe. Consider talking about what gives you comfort and strength.
- Arrange to keep in touch with your faith community. Community members could send cards, organize a prayer chain or give encouragement in another way.
- You might ask your faith leader to offer special prayers, anointing services or other healing rituals for you and your family.
- Find out if there is a local contact for your faith community in the city where your transplant will take place.
Communicate with family and friends
- Set up family meetings to talk openly about the transplant. Consider meeting with a counselor to help you and your family prepare emotionally for transplant.
- If you have children or grandchildren, you might use books, pictures or videos to help them understand why you’re going to the hospital. Super Sam versus the Marrow Monsters is an animated video that helps explain transplant to children. Visit BeTheMatch.org/SuperSam to view Super Sam online or order the free DVD.
- Talk to your children about how they will be cared for while you are in the hospital. Explain who will be with them, their schedules and how you will stay in touch. If you want help talking with your child, contact your hospital social worker or child life specialist.
- Plan how you will stay in touch with family and friends. Some people find it helpful to use social media or free websites, such as CaringBridge.org or CarePages.com, to post updates. Ask if you can use online video streaming services, such as Skype, in the hospital.
- Your child might benefit from meeting other children who have a family member getting a transplant. Ask your transplant center social worker about available support.
- If friends and family want to know what they can send, consider snacks, meal certificates, pre-paid debit cards, or notes of encouragement.
- Make a list of tasks you need help with and share with family and friends. Your list might include: cook meals for family members or drive kids to school. Free websites like LotsaHelpingHands.com can help you organize tasks for friends and family.
Organize your finances
- Keep track of the out-of-pocket costs related to your transplant. Use the Financial & Insurance worksheets to help you get started.
- Consider fundraising to raise money for out-of-pocket costs. Work with trusted fundraising organizations.
- Talk to your transplant center financial coordinator and your health insurance company to learn what your health insurance will and won’t pay for.
- Ask your transplant center social worker about:
- Local organizations that may offer financial assistance
- Whether you qualify for Social Security programs or Medicaid
- If you are a veteran, contact the U.S. Department of Veterans Affairs at (800) 827-1000 to ask about eligibility for any programs based on service record and disability.
Access legal resources
- Complete a will, trust, planning guardianship (if you are a single parent) and advance directive (a living will). Consider naming a trusted person as your medical power of attorney or health care proxy. This person can make decisions for you if you become too ill to do so.
- Consider assigning someone to handle your finances temporarily. If you do not share a joint checking or credit account, talk with your bank to find out how to give someone temporary access to your accounts.
- Talk with a financial or family law attorney if your financial or legal affairs are complicated. Contact your local bar association for a referral.
- If you have children under age 18 who will be away from both parents, give written permission for another adult to take them for medical care (emergency or routine) while you are in the hospital and recovering. Ask your children’s doctors to give you a medical release form.
Arrange travel and lodging
- Check with your health insurance company to see if your policy covers travel, meals and lodging for you and/or your caregiver.
- Ask your transplant center social worker about lodging resources near the transplant center. Ask for costs and whether you need to put your name on a waiting list.
- Make arrangements for traveling to your transplant center. If you need to fly there, you might want to ask family members if they have frequent flyer miles to help you.
- Work with trusted travel and lodging resources.
Plan for health care and prescriptions
- Ask your doctor about having any routine dental or medical appointments before your transplant if your transplant center is far from home. Schedule those appointments and make sure your caregiver does this, too.
- Make a plan for you and your caregiver to get prescriptions renewed or refilled while you’re away.
Checklists for Parents
Prepare your child
- Talk honestly with your child in words he or she will understand. You might use books, videos or pictures to help tell the story. If you want help talking with your child, contact your hospital social worker or child life specialist. Talk about:
- Who will be at the hospital, and who will care for brothers, sisters or pets at home.
- What will happen at the hospital and what the schedule might be like.
- Reassure your child that Mom, Dad or another caregiver will be available to help with whatever he or she needs.
- Help your child make a list of items he or she would like to take along.
- Talk with your child’s teachers and principal about the plan for schoolwork while your child will be away.
- Talk about ways to keep your child connected with school and friends.
- Check with the Ronald McDonald House near your transplant center to see what prior arrangements can be made for lodging.
Prepare brothers & sisters
- Talk with your children to tell them what will be happening within the family while their sibling is going through a transplant.
- If children are staying home, talk with them about who will take care of them. Reassure them they will be taken care of during this time and that you love them.
- If you are a single parent with more than one child, think about who will care for your other children if you must travel for your child’s treatment. For example, who can consent for your children’s medical care or contact the school while you are away. Talk about this with your child’s doctor, teachers and family.
- Talk with your other children about any planned family visits to the transplant center.
- School enrollment might be available at the hospital, Ronald McDonald House or in the community. Talk with your transplant center social worker to see if this option is available.