This checklist is a guide to help you prepare for your BMT. Some items will not pertain to your situation. You may use this list to help you develop questions for your transplant coordinator, social worker, or financial worker. Also, decide what the best way is for you to get all the information you need about your upcoming treatment. For example, you may want clarification in writing. Or, you may want to a friend or family member to go to your appointments to hear information with you. A tape recorder is another option if you want to play back important information at a later time.

Preparing your family

Support Groups

Choosing a caregiver

Before you leave home

Employment issues

Accommodations

Legal issues, including Health Care Directive

Financial issues

Finding support

Faith and Spirituality


Preparing your family

• Set up family meetings to talk openly about the medical treatment you will will be having. Talk about any plans that you and your family need to make.
• If you have children or grandchildren, explain to them in words that they can understand why you are going to the transplant center. You may use books, photos, or videos to help them understand. Your social worker can provide supportive educational materials.
• Talk to your children about what will happen to them while you are in the hospital and recuperating from the transplant. Identify who will be with them, how their schedules will be maintained, and how you will communicate with them. If you want assistance talking to a child, contact your social worker.
• Discuss your needs and concerns with your spouse, partner, or significant other.
• Consider setting up an appointment with a counselor to assist you and your family in preparing for transplant.

Support Groups

• Children may benefit from connecting with others in their age group who have a family member being treated for cancer. The American Cancer Society and the Leukemia and Lymphoma Society offer children’s groups in many locations. Kids Konnected offers a Web site http://www.kidskonnected.org/ or a toll-free line (1-800-899-2866). They offer advice about how to talk with children about cancer. Your social worker may refer you to other groups that are offered at the hospital or in the community.
• Support groups for adults and family members often help during stressful times. They can provide answers to commonly asked questions. They can also provide mutual support from others who have had a transplant. The Blood and Marrow Transplant Program offers support groups at University of Minnesota Medical Center. For other groups in the Twin Cities metro area you may contact your social worker or call the American Cancer Society at (952) 925-2722.

Choosing your caregiver

• Identify someone to assist you during and after your hospitalization. This could include family members or friends who are available to be involved and support you with your care. They are commonly designated as your "caregivers" because they participate in your follow-up care. We require you to have a caregiver present to stay with you after you leave the hospital.
• To assist your caregiver in understanding his or her role, ask your social worker what is expected. Ask how long you are required to have a fulltime caregiver. Ask what types of activities your caregiver will need to do.
• Caregiver(s) may need to complete their own routine dental and medical appointments if they are going to be away from home for several months. They should refill prescriptions as needed and arrange for how to fill prescriptions while they are away from home.
• Caregivers who are under a physician or therapist’s care should discuss the care plan to follow while they are away. They may want to arrange for possible follow-up care near the BMT center.

Before You Leave Home

• Prepare a packing list. Think of clothes for different temperatures and seasons, if appropriate. Include some family photos or posters that may brighten your hospital room or temporary living space.
• Bring phone lists, addresses and E-mail directories.
• Bring phone cards to have with you during your hospitalization for making long-distance calls. Cell phones are not allowed in the inpatient rooms.
• Plan who will look after your home or apartment while you are away.
• Consider how you will pay your bills while you are away. When possible, pay ahead. You may consider checking with certain loans (such as car, student loan, etc.) about the possibility of temporary deferment (grace period) of payments due to medical disability.
• Have your mail forwarded or arrange to have someone review your mail for you while you are away.
• Make arrangements for someone to care for your pet during your treatment. Most temporary lodging facilities do not have accommodations for pets.
• If you have a pet bird or reptile, there may be restrictions for handling your pet following transplant. Ask your physician for guidelines.

Employment issues

• Contact your employer to make arrangements regarding absence from work. Seek out your Employee Human Resource Representative to help you understand your benefits and responsibilities. You'll want to make sure you do what you have to to qualify for disability and continuation of insurance. Know your rights regarding Cobra insurance benefits, work disability and family medical leaves.
• Ask your physician about the estimated length of your disability. You may qualify for Social Security Disability or Supplemental Security Insurance. The Human Resource Representative at work or your social worker can help you understand how these programs may apply to your situation.
• Click this link for more information on Financial Services and issues.

Accommodations

• Check with your insurance to see if your benefits cover travel, meals and lodging for you and a caregiver.
• Ask your social worker about lodging resources near University of Minnesota Medical Center. You can also call our Accommodations office at(800) 328-5576 for help with lodging resources. Also, click on this link for more information on Housing and Lodging.
• Make travel arrangements. You may want to ask family members if they have frequent flyer miles available to assist you. If you need assistance for travel, you may contact the National Patient Travel HELPLINE Program at 1-800-296-1217 for resource information ( http://www.patienttravel.org/ ).

Legal issues
There are a number of legal and logistical issues that you may want to consider as you prepare for your BMT treatment.

• If you do not share a joint checking account with someone, you may want to designate someone to handle your financial affairs temporarily.
• You may want to know your rights under the "Americans with Disabilities Act." Certain aspects of the law can help protect you against discrimination upon your return to work.
• Perhaps your minor children will be separated from both parents at certain times during your treatment. If so, you need to give permission for another adult to take them for medical care (emergency or routine) in your absence. Generally, a signed statement will suffice, but you should check this out with your children’s pediatrician.
• Perhaps you are interested in estate planning. This includes how a trust might work for you, planning for guardianship of your children if you are a single parent, completing advance health care directives or designating power of attorney. Depending on how complicated your financial or legal affairs, you may want to consult a lawyer who is versed in financial/family law. Many employers have employee assistance programs that include access to legal advice. You can also contact your local bar association for referrals to someone practicing in this area of law.

What is a health care directive?
A health care directive is a form in which you state what kind of health care you would or would not want if cannot or choose not to communicate for yourself. You fill out this form before you start to receive health care, so that people know what you want. In the document, you can name one or more people who can make health care decisions for you. Or, you can leave written instructions to guide others in making health care decisions for you. Or you can do both. Health care providers are obligated to follow these directions. In Minnesota, there is form for making a health care directive. This form replaces the living will and durable power of attorney for health care. However, each of those forms will still be honored if  it complies with the law in effect at the time you completed it, or if it meets the following six criteria:

• It is in writing.
• It is dated.
• It states the principal's name.
• It is executed by the principal with the capacity to do so.
• Its execution is verified by a notary or two witnesses.
• It includes either a health care instruction or a named health care agent (health care power of attorney) or both.

Click here for a downloadable copy of the Minnesota Advance Health Care Directive (pdf).

Financial issues

• Some organizations offer limited financial assistance to help with costs not covered by insurance. The Leukemia and Lymphoma Society is one such organization (for patients with leukemia, lymphoma, myelodysplastic syndrome or multiple myeloma). They can be reached at 1-800-955-4572 or online at www.lls.org . Or you can contact your local chapter. Cure for Lymphoma Foundation (for patients with Hodgkin’s disease and non-Hodgkin’s lymphoma) can be reached at 1-800-235-6848 . Check with your social worker for additional resources.
• The Federal government has two income insurance programs available for adults: Social Security Disability Insurance and Supplemental Security Income. Eligibility is based on your doctor verifying that your disability will last one year or longer. You may qualify to start receiving benefits at an earlier date. Contact a Social Security office to apply ( www.ssa.gov ).
• If you are covered under your employer’s disability plan (short and/or long term), the employer will assist you in determining when to apply. Those who qualify for Supplemental Security Insurance (based on meeting minimum income requirements) are likely to be eligible for Medical Assistance. This can help cover medical care expenses.
• If you are a veteran, contact your VA office to ask if you are eligible for any programs based on your service record and disability.
• Fundraising may be done locally on your behalf. You may want the assistance/expertise of a fundraising organization if you think you will have uncovered medical expenses. Contact the National Marrow Donor Program, Office of Patient Advocacy, for a list of fundraising organizations. You can reach NMDP at 1-888-999-6743 or online at Be the Match.com, to learn more about fundraising for a friend or family member.

Finding personal support

• Talk honestly with friends, family and colleagues to help them understand the types of support that you will need during your treatment. 
• Support comes from many sources. Reach out to work colleagues, neighbors, and community organizations, a religious or spiritual group, extended family or supportive friends. A group may offer to provide meals for family members at home while you are at the hospital. Others may offer to provide rides for children to school activities. There is a Web site that can assist with coordinating these needs: www.lotsahelpinghands.com
• The CaringBridge Web site offers a place for you to set up a Web site to keep your family and friends informed during your hospital stay. It also provides a place for you to receive support and encouragement from those you love. To protect the privacy of our patients and staff, please do not identify other patients or health professionals on your CaringBridge site.
• The Internet is another source for information and a place to connect with transplant survivors. One place to start is: www.bmtinfonet.org.

Faith / Spirituality

• Identify your personal source of spirituality such as faith community, meditation, reading, music or rituals.
• If you are a member of a faith community, arrange ways to keep in touch. People may want your address so they may send cards, offer support and words of encouragement.
• A chaplain is available to you during your treatment at the University of Minnesota Medical Center.