Patient Support

Discounted parking coupons are available at the “H” cashier’s office in the H Building or at the cashiers’ booths in the parking garages. One parking coupon can be used to exit the garage after any Cleveland Clinic visit, regardless of length, location or date of the visit. Please refer to the Cleveland Clinic map for parking garage locations.

Leukemia and Lymphoma Society

If you have leukemia, lymphoma or myeloma, you may want to register with the Leukemia and Lymphoma Society to access their patient aid program. This program may reimburse up to $500 per year for certain expenses, including the cost of parking and mileage incurred for outpatient visits. 800.589.5721 or visit the Leukemia and Lymphoma Society for more information.

Parking Services

• Parking Services at Cleveland Clinic

The expense of lodging while undergoing treatment in Cleveland can be burdensome; therefore, we recommend that you check with your health insurance to determine if your policy offers a lodging and travel benefit associated with your transplant. The American Cancer Society’s Hope Lodge offers no-cost lodging for patients who are undergoing cancer treatment and their families. Please talk with your social worker if you are interested in being placed on the waiting list for Hope Lodge. Cleveland Clinic also offers an outpatient housing unit for transplant patients located in Cleveland Clinic's Guest House Hotel.

For additional lodging information, you may contact your social worker or view the links below.

• Hotels and Lodging Options at Cleveland Clinic
• Cleveland Clinic Social Work Department

Hope Lodge

The American Cancer Society's Hope Lodge is a unique option for adults who need temporary, no-cost accommodations while receiving cancer treatment and who live a distance from Cleveland. The Hope Lodge is located just blocks away from Cleveland Clinic. Oncology patients and/or families can stay here while receiving treatment in Cleveland.

Patients must have care-partners stay with them at Hope Lodge. Your social worker can register you for this facility. If you do plan to stay at Hope Lodge, it is recommended that you make back-up lodging arrangements because there is a waiting list, and room availability may not be known until just before your bone marrow transplant.

Transplant Hospitality Unit

Cleveland Clinic's Transplant Center offers the Transplant Hospitality Unit, an on-site affordable lodging facility used to accommodate pre- and post-transplant patients and their families. The Transplant Hospitality Unit is conveniently located on the second floor of the newly renovated and exclusive Guest House Hotel, right off Euclid Avenue on Cleveland Clinic’s main campus. The lodging is within close proximity (walking distance) to Cleveland Clinic. If the Transplant Hospitality Unit is full, the Cleveland Clinic Guesthouse will provide you with a discounted rate.

• Learn More

To arrange a tour of the inpatient Bone Marrow Transplant Unit and the Hematology/Oncology Unit, please contact your bone marrow transplant social worker.

Having family and close friends visit can be very helpful while recovering from your bone marrow transplant. It is a good idea to think ahead about having your family and friends take turns visiting so that you are not overwhelmed with company. You may want to ask others to call ahead before coming to see if you feel up to a visit. It is important that visitors wash their hands before entering your room. Visitors should not come if they have an infectious illness like the flu or common cold.

Visiting Hours

The Bone Marrow Transplant Unit does not enforce strict visiting hours. However, the staff requests that the number of visitors at one time be limited during your bone marrow transplant recovery. Having a family member stay in the hospital room overnight is permitted when your condition after your bone marrow transplant warrants this.

Children

Children are allowed to visit you during your inpatient stay, but they may only visit in your room with your door closed. Children are not allowed in the patient lounge or exercise room. Please talk with your social worker about ways to plan ahead for temporary separation from your children or grandchildren prior to your bone marrow transplant. Your social worker can provide counseling to assist with any emotional concerns your children may experience.

Family Lounge / Exercise Room

The Bone Marrow Transplant Family Lounge has comfortable seating, a television and DVD player, a computer with Internet access, books, and movies. The exercise room has treadmills and a stationary bike.

Telephone

A telephone with an individual phone number is provided in all rooms. A daily fee for the telephone will appear on your home telephone account. Please talk to your social worker if this will be a financial burden for you. Most people decline the phone service and utilize their cell phone instead.

Please note: You will not know your telephone number until you have checked into your room.

Television

A color television with a DVD player is provided in every room. Commercial and limited cable channels as well as several Cleveland Clinic channels are free of charge. You are welcome to bring movies from home and the nurse’s station at M50 also has several movies available for loan while you recover from your bone marrow transplant.

Internet Access

Some patients choose to bring a laptop with them. Cleveland Clinic is not responsible for this equipment. Internet access is available through a wireless network connection. For patients and families without a personal laptop, a computer with internet access and a printer is available in the Family Lounge.

Your Name
Cleveland Clinic
G110
9500 Euclid Ave.
Cleveland, Ohio 44195-5232

Our goal is to provide you with the best possible care in an atmosphere that is pleasant, educational and supportive. If there is anything we can do to improve your hospital stay during and after a bone marrow transplant, please do not hesitate to ask. If you need anything or have questions or concerns, you can use your “call bell.”

Requirements:

• Patients having allogeneic, reduced intensity allogeneic and mini allogeneic bone marrow transplants must have a care-partner stay with them 24-hours a day when they are discharged from the hospital for at least the first 100 days post-transplant.
• Patients and care-partners must stay within a one-hour drive of Cleveland Clinic's main campus.
• Patients may have more than 1 care-partner, we recommend no more than 2-3 care partners.

Your care-partner should be supportive, as well as willing to provide care such as:

• Communication with the BMT team when there is a problem (for example: fevers, bleeding, changes in mental state, severe nausea and vomiting, or uncontrolled pain)
• Transportation to and from the transplant clinic as needed
• Care for the central venous catheter as instructed
• Assistance with medications and IV medications
• Assistance with nutritional needs
• Assistance in keeping the patient’s home or living area clean

All allogeneic and mini allogeneic patients as well as their care-partners will be asked to sign our care partner agreement after meeting with their social worker and establishing a good care partner plan.

Requirements:

• Patients having autologous bone marrow transplants may be required to stay within a one-hour drive from Cleveland Clinic while undergoing outpatient pre-transplant care.
• It is recommended that patients have a care-partner stay with them, especially if they are given chemotherapy to help collect stem cells.
• After patients are discharged from the inpatient hospital unit, they typically are able to return directly home, but may require temporary assistance at home from a family care-partner.
• Patients will have a follow up appointment at Taussig Cancer Institute 2 to 3 days after discharge and will most likely need someone to drive them to that appointment.

Care-partners play a critical role in the transplant process. Caring for a transplant patient not only challenges your physical needs but your emotional needs as well. Here are some tips to help you prepare for this role:

• Ask the Transplant Team questions. Learn as much as you can about your loved one’s treatment, medications, and possible side effects to help you understand what is happening.
• Plan a network of support before the transplant. Having a few people lined up that you can rely on will be very helpful. Delegate one or two people to communicate medical progress to others so you don’t have to update everyone daily.
• Be prepared for changes in your loved one’s behavior. Medications, discomfort, and stress can cause your loved one to become depressed or angry. These changes are temporary.
• Take care of yourself. Be realistic about your own needs. Get enough sleep, eat properly, and take some time for yourself. You can’t offer much help if you are exhausted or overwhelmed.
• Try to maintain a balance between helping your loved one accomplish a task and actually doing the task for him or her. Allow your loved one enough time to complete activities on his or her own.
• Set attainable goals for you and your loved one. Do not attempt to do everything. By setting attainable goals, you are setting everyone up for success rather than disappointment.
• Ask other family members and friends for help. Oftentimes, they want to help but don’t want to interfere. While family and friends might not be able to help out at the hospital, let them help with daily errands or chores at home. Your family and friends will appreciate the opportunity to lend a helping hand.
• Have someone you can talk to. You are there for your loved one to listen and to offer support, but you also need a support person. Talk openly and honestly with a friend or family member.
• Consider joining a support group or talking to a social worker to address specific concerns you may have about caring for your loved one. Understanding that you are not alone and that there are others in similar situations will help you cope.
• Talk to your loved one about his or her family affairs. Although it’s not easy to discuss these topics, you should be informed of your loved one’s wishes regarding a living will and durable power of attorney for health care.

This inpatient education group meets on the first Wednesday of the month in the G110 lounge. This group is facilitated by a social worker and nurse coordinator from the BMT Program and provides necessary information to prepare patients and caregivers for care after transplant.

Contact:
Jane Dabney, LISW-S
Phone: 216.445.2483
Toll-free: 800.223.2273 ext. 52483

This group is for patients with multiple myeloma, their families and friends. The group meets quarterly in the Taussig Cancer Institute, Room R3-002.

Contact:
Barb Savage, LISW-S
Phone: 216.444.6465
Toll-free: 800.223.2273 ext. 46465

"Circle of Friends" is a support group that offers a series of educational and supportive sessions for adults responsible for caring for a loved one with cancer. Meetings will offer information that will assist you in your role as a caregiver and also provide an opportunity for you to receive support in a safe environment with others dealing with similar issues. Meetings are held monthly.

Contact:
Christa Poole, LISW-S
Phone: 216.445.2148

The Leukemia and Lymphoma Society sponsors this quarterly group for adults who have undergone a bone marrow or stem cell transplant. Participants learn the latest information and have an opportunity to discuss the unique issues faced by those who have had a transplant. Family members are welcome.

Contact:
Linda McLellan, LISW-S
Phone: 216.444.5079
Toll-free: 800.223.2273, ext. 45079

Leukemia and Lymphoma Society
Toll-free: 800.589.5721

Supports cancer research, conducts educational programs and offers support groups, including “Look Good, Feel Better,” to patients and their families. Provides free booklets about leukemia.

• Look Good, Feel Better

• Review what has been helpful and not helpful to you in the past when dealing with stressful or difficult situations.
• Focus on building on your strengths, and stay open to new ideas and strategies.
• Utilize your support network of friends and family. Having loved ones or friends visit or call you can be very comforting. Discuss your feelings about what is happening with your friends and family. Allow family and friends to help you sort through the information you receive.
• Talk with other patients and families about bone marrow transplantation. Talk with your social worker about the Leukemia and Lymphoma Society’s “FirstConnection” program. Please see the section, “Support Groups” for more information.
• Make use of resources and support services at The Cleveland Clinic and in the community. This notebook contains information about available resources that can help you learn about your disease and help you feel comfortable with your treatment.
• Actively participate in your treatment plan. You are a valuable and key person in your treatment plan. Stay informed and communicate your questions and ideas to the medical team. Do not be afraid to ask your doctor, nurse or other health care provider to repeat any instructions or medical terms that you don’t understand. Your Bone Marrow Transplant Team is always available to answer your questions and address your concerns.
• Focus on things you can influence. Let go of things you can't change or control, and focus on doing things that will help your situation.
• Focus on what needs to be done here and now. It is easy to get overwhelmed if you think about everything that you may eventually have to deal with. Focus on what you are currently dealing with and can work on.
• Accept your reactions and your natural pace. Accept how you feel about events and give yourself time to adjust and process thoughts and feelings about what is happening.
• Give yourself things to look forward to. Your energy has been focused on treatment, but there are still things you can enjoy, and you need to plan simple pleasures to which you can look forward.
• Focus on what you have. Try to focus on what you still have and have gained versus what you have lost or haven't accomplished yet.
• Accept the unexpected. Accept that there are events you cannot control. Few things will happen exactly as expected. Plan for delays, setbacks and surprises.
• Reduce Stress: When you are facing cancer, stress can build up and affect how you feel about life. Prolonged stress can lead to frustration, anger, hopelessness and, at times, depression.

• Be assertive instead of aggressive. "Assert" your feelings, opinions, or beliefs instead of becoming angry, combative, or passive.
• Learn to relax.
• Exercise as often as you can.
• Eat well-balanced meals.
• Rest and sleep. Your body needs time to recover from stressful events.
• Learn to Relax There are a number of exercises you can do to relax. These exercises include breathing, muscle and mind relaxation, relaxation to music, and biofeedback. A few for you to try are listed below. First, be sure that you have a quiet, distraction-free location. Try to find a comfortable body position. Sit or recline on a chair or sofa. Also, have a good state of mind -- try to block out worries and troubling thoughts.

Switch your thoughts to yourself and your breathing. Take a few deep breaths, exhaling slowly. Mentally scan your body. Notice areas that feel tense or cramped. Loosen up these areas, letting go of as much tension as you can. Rotate your head in a smooth, circular motion once or twice. (If any movement causes pain, stop immediately.) Roll your shoulders forward and backward several times. Let all of your muscles completely relax. Recall a pleasant thought for a few seconds.

Take another deep breath and exhale slowly. You should feel relaxed. Mind Relaxation Close your eyes. Breathe normally through your nose. As you exhale, silently say to yourself the word "one," a short word such as "peaceful," or a short phrase such as "I feel quiet." Continue for 10 minutes. If your mind wanders, gently remind yourself to think about your breathing and your chosen word or phrase. Let your breathing become slow and steady.

Imagine a spot just below your navel. Breathe into that spot and fill your stomach with air. Let the air fill you from the stomach up, then let it out, like deflating a balloon. With every long, slow breath out, you should feel more relaxed.

The Leukemia and Lymphoma Society

1311 Mamaroneck Ave.
White Plains, NY 10605
Phone: 914.949.5213
Toll-free: 800.955.4572
Email: lsa2000@aol.com
Website: www.leukemia-lymphoma.org

Services include health education, peer-to-peer support, support groups and patient financial aid for certain treatment-related expenses (up to $500 per year per patient). Supports cancer research and provides information and support to patients with leukemia, lymphoma and multiple myeloma.

BMT Infonet - (Blood and Marrow Transplant Information Network)

2900 Skokie Valley Road, Suite B
Highland Park, IL 60035
Phone: 847.433.3313
Toll-free: 888.597.7674
Email: help@bmtinfonet.org
Website: www.bmtinfonet.org

Provides information about bone marrow and blood stem cell transplant, and provides an Internet connection between transplant patients and survivors.

Lymphoma Research Foundation of America

8800 Venice Boulevard - Suite 207
Los Angeles, CA 90034
Phone: 310.204.7040
Toll-free: 800.500.9976
Email: helpline@lymphoma.org
Website: www.lymphoma.org

Newsletter, e-mail updates, support, helpline, information on treatment and clinical trials. Provides $500 grant to six patients each month for non-medical expenses.

American Cancer Society

1599 Clifton Rd., NE
Atlanta, GA 30329
Phone: 404.320.3333
Toll-free: 800.227.2345
Website: www.cancer.org

Look Good, Feel Better National

Website: www.lookgoodfeelbetter.org
Supports cancer research, conducts educational programs and offers support groups, including “Look Good, Feel Better,” to patients and their families. Provides free booklets about leukemia.

Cancercare

Toll-free: 800.813.HOPE (4673)
Website: www.cancercare.org

A national, non-profit organization whose mission is to provide free professional help to people with cancers through counseling, education, information and referral, and direct financial assistance.

National Marrow Donor Program (NMDP)

3433 Broadway Street NE, Suite 500
Minneapolis, MN 55413
Phone: 612.627.5800
Toll-free: 800.526.7809
Donor Information: 800.MARROW2
Website: www.marrow.org

Facilitates marrow and blood stem cell transplants for patients who do not have a matched donor in their family. Is a network of national and foreign donation centers, collection centers, transplant centers and minority recruitment groups.

Office of Patient Advocacy

Toll-free: 888.999.6743
Assists patient who lack funding for unrelated donor search and/or procurement.

The Ulman Cancer Fund for Young Adults

Website: Teens Living with Cancer
Connects you with other young adults affected by cancer.

Canteen: Supporting Young People Living With Cancer

Website: www.canteen.org.nz
Their mission statement is to support, develop and empower young people aged 13-24 years living with cancer or a life-threatening blood disorder and their teenage siblings. We do this by providing a peer support network and focused educational and developmental programmes to assist them in moving forward with their lives.

American Cancer Society

1599 Clifton Rd., NE
Atlanta, GA 30329
Phone: 404.320.3333
Toll-free: 800.227.2345
Website: www.cancer.org

Look Good, Feel Better National

Website: www.lookgoodfeelbetter.org
Supports cancer research, conducts educational programs and offers support groups, including “Look Good, Feel Better,” to patients and their families. Provides free booklets about leukemia.

Look Good, Feel Better at Cleveland Clinic

Cuyahoga County Office
10501 Euclid Ave
Cleveland, OH, 44106
Toll-free: 888.227.6446
Website: Look Good, Feel Better at Cleveland Clinic

Kids Konnected

Phone: 949.582.5443
Website: Kidskonnected.org

Founded under the premise that when a parent gets cancer, the entire family is affected. Children facing the same fears and sharing similar experiences can be helped by others in a similar situation.

Cancer Care For Kids

Website: www.cancercare.org

Fertility

Fertile HOPE

Toll-free: 1.888.994.HOPE
Website: www.fertilehope.org
A non-profit organization dedicated to helping cancer patients faced with infertility.

The Status.com

Public Knowledge Systems, LLC
P.O. Box 111586
Anchorage, AK 99511-1586
Phone: 907.677.2160
Toll-free: 800.290.2292
Website: The Status.com

Website to keep family and friends updated on the patient’s condition. Family and friends can write messages to patient. Requires secured password to protect patient’s confidentiality.

Lotsa Helping Hands

Website: www.lotsahelpinghands.com
Lotsa Helping Hands is a simple, immediate way for friends, family, colleagues, and neighbors to assist loved ones in need. It's an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during a crisis.

National Foundation for Transplants

1102 Brookfield - Suite 200
Memphis, TN 38119
Phone: 901.684.1697
Toll-free: 800.489.3863
Email: jhill@transplants.org
Website: www.transplants.org

National Transplant Assistance Fund

3475 West Chester Pike, Suite 230
Newtown Square, PA 19073
Phone: 610.353.9684
Toll-free: 800.642.8399 
Email: NTAF@transplantfund.org
Website: www.transplantfund.org

Needy Meds

Email: drugmaven@earthlink.net
Website: www.needymeds.org

Lists pharmaceutical manufacturers who provide drugs free of charge to patients with limited financial resources.

Rx Assist

Phone: 877.844.8442
Website: www.rxassist.org

Provides information about public and private pharmaceutical patient assistance programs, including drug discount cards.

RX for Ohio

Website: www.rxforohio.org
Designed to help low-income, uninsured Ohio residents get free or discounted brand-name medicines.

Good Life Resources

Website: www.goodliferesources.com
Provides medications and supplies to organ transplant recipients and people with chronic illnesses.

Social Security Administration

Contact your local office or 800.772.1213
Website: www.ssa.gov
If a person is likely to be unable to work for 12 months while undergoing treatment, applying for Social Security Disability is an option.

Ohio Department of Insurance

2100 Stella Court
Columbus, OH 43215
Toll-free: 800.686.1578
Website: www.ins.state.oh.us

Patient Advocate Foundation

700 Thimble Shoals Blvd, Suite 200
Newport News, VA 23606
Phone: 757.873.6668
Toll-free: 800.532.5274
Email: info@patientadvocate.org
Website: www.patientadvocate.org

Serves as an active liaison between the patient and his or her insurer, employer or creditors to resolve insurance, job discrimination and/or debt crisis matters relative to their diagnosis.

Cleveland Clinic's Center for Integrative Medicine
Phone: 216.986.4325

Health Journeys: The Guided Imagery Resource Center
Email: info@healthjourneys.com

National Center for Complementary and Alternative Medicine (NCCAM)

P.O. Box 7923
Gaithersburg, MD 20898
Phone: 301.519.3153
Toll-free: 888.644.6226
TTY: 866.464.3615 (for hearing impaired)
Email: info@nccam.nih.gov
Website: www.nccam.nih.gov