BLOOD AND MARROW TRANSPLANT PROGRAM GUIDE FOR YOUR CARE AND TREATMENT

BLOOD AND MARROW TRANSPLANT PROGRAM GUIDE FOR YOUR CARE AND TREATMENT

For more information, visit bmt.umn.edu (pediatric patients) or mhealth.org/bmt (adult patients) A collaboration between University of Minnesota Physicians and University of Minnesota Medical Center. 2016 University of Minnesota Physicians and University of Minnesota Medical Center. Mktg 219070. SmartWorks 503095. 07.16

Page 1 of 1 How to Use This Handbook Your Care on the BMT Unit This handbook is a guide to your care and treatment as a patient in the BMT (blood and marrow transplant) program. You will learn about your team of care providers, the BMT clinic and what to expect while you are a patient on the BMT unit. The handbook also describes the people and resources that can support you and your family during the BMT process. The section called After Transplant contains guidelines for your care during recovery. We are world leaders in BMT. Our expert health care team will apply leading research to your treatment. You will receive a good deal of information as you go through treatment, so feel free to take notes and ask questions at any time. This handbook is set up for your use before, during and after transplant. We urge you to bring the binder to clinic visits and the BMT unit during your stay there. You may refer to the materials at any time, and the binder is a good place to store your medical reports and keep notes. If you are deaf or hard of hearing, please let us know. We provide many free services including sign language interpreters, oral interpreters, TTYs, telephone amplifiers, note takers and written materials. For informational purposes only. Not to replace the advice of your health care provider. Copyright 2010 Fairview Health Services. All rights reserved. SMARTworks 521112 02/18.

Page 1 of 2 What to Expect at the Journey Clinic Center for Pediatric Blood and Marrow Transplant The Journey Clinic East Building, 9th floor 2450 Riverside Ave. Minneapolis, MN 55454 Phone: 612-365-8100 Clinic hours: Monday to Friday, 7:30 a.m. to 5:30 p.m. After hours: Pediatric Call Center: 612-365-1000 Riverside Outpatient Pharmacy Professional Building, 2nd floor 606 24th Ave. S. Minneapolis, MN 55454 Phone: 612-672-7500 Fax: 612-672-7512 Pharmacy hours: Monday to Friday, 8 a.m. to 6 p.m. Saturday, 8 a.m. to 4 p.m. Sunday, 9 a.m. to 3 p.m. (refill one week before your medicines run out) Your clinic visits You will receive outpatient care at our BMT clinic before, during and after transplant. Please arrive 30 minutes early for each visit. We will use this time to do lab work. BMT doctors and other care providers are in clinic. Other team members you may see include: Nurse coordinators Social workers Child-Family Life specialists Pharmacists (on weekends and holidays, use the hospital pharmacy) Interpreters, if needed A dietitian, as needed Care Partners volunteers Treatments Chemotherapy IV fluids, blood products and antibiotics (germ-fighting medicines) Electrolyte replacement (replaces lost minerals such as sodium and potassium) Pentamidine therapy (treats pneumonia) For informational purposes only. Not to replace the advice of your health care provider. Developed in collaboration with University of Minnesota Physicians. Copyright 2011 Fairview Health Services. All rights reserved. SMARTworks 521230 03/14.

Page 2 of 2 Testing We do blood tests in the clinic. Bone marrow biopsies and lumbar punctures (spinal taps) are done in the hospital. While you are here If your treatment takes several hours, let us know. We will give you breakfast or lunch free of charge. You may choose a book from our library in the lobby. Billing You will receive two bills for each visit. One will come from Fairview and the other from University of Minnesota Physicians. For billing questions during the first year after transplant, please call: 612-273-4906 (last names A G) 612-273-7725 (last names H O) 612-273-6048 (last names P Z) We also have a playroom for children. Scheduling your clinic visits We schedule appointments one at a time. After you see your doctor, you may schedule your next visit at the front desk. We will give you a reminder card at that time. If you are deaf or hard of hearing, please let us know. We provide many free services including sign language interpreters, oral interpreters, TTYs, telephone amplifiers, note takers and written materials.

Page 1 of 5 While Your Child Is on the BMT Unit A Guide for Patients, Family and Visitors Your child s care Your child s health care team provides familycentered care. Our goal is to get to know you and your child so we may best meet your needs. You will meet doctors, nurses and other specialists the day you arrive. Your child will receive expert medical care from our highly skilled care team. They will assist you and your child before, during and after transplant. Please speak to your nurse if you have any questions about these guidelines. We are here to make you and your child as safe and comfortable as we can. Nursing care As your child s needs change, the nurses who care for your child may change as well. We will check your child s pulse, blood pressure and temperature every four hours or as needed. Only hospital staff may do these checks. Family members should not do them. We will record how much food and fluids your child receives (this includes IV fluids). We will also measure your child s output of urine and stool. We will weigh your child every morning before 9 a.m. Some patients are weighed twice a day. We will take blood samples from your child s central line. We do this at 4 a.m. and as needed. We check for infections routinely. To do this, we will swab your child s nose, throat and rectum. We may also take samples of urine and stool. We will change the bandage around your child s central line every two to three days or as needed. We will change your child s IV tubing at least every three days. Your child must wear an ID band at all times. This is for your child s safety. If you are deaf or hard of hearing, please let us know. We provide many free services including sign language interpreters, oral interpreters, TTYs, telephone amplifiers, note takers and written materials.

Page 2 of 5 Medical care A team of providers cares for each patient. The doctor who leads your child s team will be in charge of your child s care. Each morning a member of the BMT team will examine your child, meet with the care team and create a daily care plan for your child. During the night a doctor will always be on call. The team will consult with other specialists as needed. Your team of providers includes: Attending physicians: doctors in charge of your child s care plan. They are the most experienced persons on the team. Fellows: doctors who are training in hematology (study of blood and related organs), oncology (study of cancer) and BMT. Nurse practitioners (NPs): nurses (RNs) certified for advance nursing practice in BMT. Physician assistants (PAs): providers licensed to provide care delegated by a doctor. Residents: doctors who are training in BMT as part of their program. Other BMT team members Nurse coordinators work with BMT doctors to plan patient care, testing and treatment. They will also coordinate your child s care plan after he or she leaves the hospital. Social workers help patients and families with practical and emotional issues. Your social worker will provide counseling and support and address your non-medical concerns. Child-Family Life specialists are experts in the way children develop and grow. They use medical play to prepare children for treatments. They are ready to work with you and your child during all phases of your child s BMT treatment. Dietitians are experts in nutrition. They will work with the care team to make sure your child is well nourished during your stay and after he or she leaves. Pharmacists are experts in managing the medicines used in BMT. Each day they will review your child s medicines with the doctors. They will also manage your child s medicines after he or she leaves the hospital. Your child will receive physical (PT), occupational (OT) and speech therapy, if needed. At any time you may ask to meet with a chaplain. As you meet your providers, you may find you need some help putting names with faces. Your care team members wear picture ID name tags. The patient care areas often have picture boards of the team to help you identify care team members. Also, you can find photos of some of our care team on our website: www.uofmbmt.org.

Page 3 of 5 Your child s safety Your child s room Your child s room has been assigned based on his or her current needs. We may need to move your child to another room on the BMT unit to do a complete cleaning of the room. We may also move your child if he or she needs a higher level of care. Any item you bring into the room must have been washed or cleaned with germ-fighting (disinfectant) wipes. Ask us for wipes if you do not have them. Do not use tape on the walls of the room. Over time, tape will cause the paint to chip, and this could be harmful to your child. Ask your nurse about using 3M Command Strips instead. Do not bring in: Plant or animal items (this includes feathers, live plants, cut flowers and moss). They carry spores that may harm your child. Pillows or toys stuffed with feathers or down. Latex balloons (can cause severe illness in anyone with a latex allergy). Tips for Parents We urge you to take breaks away from the BMT unit. You need to take care of yourself to help prevent illness. Room safety Keep personal items and IV lines off the floor. Keep the walking area cleared. Keep the top two side rails up on your child s bed. This will help prevent falls. Keep the door to the room shut. Your child s room has a HEPA filter to clean the air. If the door is open more than 45 seconds, an alarm will sound. Tell your nurse if your child s IV pump or monitor is beeping. Only staff members may touch these items. Food Do not share food with your child. Do not give your child left-over food. You may bring in food from outside the hospital. If food is hot, bring it right to your child s room. Do not reheat or refrigerate it. You may use the family refrigerator. Please label and date all foods. Throw away open foods after three days. You may keep foods that won t spoil (such as cookies or crackers) in the room. Store the food in a sealed or covered container. Food Service will deliver and remove meal trays. If a meal tray has not been removed from the room, nursing can help you. If you need extra support, please let us know. You may meet with a social worker, chaplain or Child-Family Life specialist.

Page 4 of 5 Cleanliness and hygiene Follow mouth care guidelines four times a day. Your child must bathe on chemo days. When chemo is over, your child must bathe at least every other day. Unplug the IV pump before bathing. Protect your child s central line. Cover the bandage with plastic wrap or another barrier. Tape the IV lines to your child s skin. After a bath or shower, remove the tape. Wipe all connection points with alcohol. Don t soak the lines in bath water. Leave the showerhead hanging down when not in use. This helps stop the growth of germs. Staff will change bed linens daily. When chemo is over, beds are changed at least every other day. You should wash blankets from home at least weekly. Wear gloves and a gown when you change your child s diapers or handle body fluids: during chemo and up to 48 hours after the last dose. when your child is in isolation. Do not use the child s toilet or shower. Activity We urge children to be out of bed three times a day, or as often as they are able. Even getting up for a short time is helpful. Once BMT treatment begins, your child must wear an N95 mask every time he or she leaves the room. If your child received his or her own stem cells (autologous transplant), the child may walk in the hall anytime. Your child must wear an N95 mask. If your child received donor stem cells (allogeneic transplant), your child may walk in the hall if he or she has an ANC (absolute neutrophil count) higher than 500 for three days in a row. Your child must wear an N95 mask. Your child may play with toys, games and videos from the Child-Family Life room. Please ask a staff member to let you in. Hand washing All family, staff and visitors must wash their hands with soap and water for 15 seconds the first time they enter the room each day. If you or your child leave the room or unit, wash for 15 seconds when going back in. You and your child may clean your hands with hand sanitizer (alcohol hand-rub) after you have washed with soap and water.

Page 5 of 5 For visitors All visitors must wear a visitor pass or a parent photo ID. You may get a pass when you sign in. After visiting hours, check in at the desk in the main lobby. Keep items that are rarely washed (coats, boots, bags) in the family lockers. Visitors may not use the child s bathroom. We have public bathrooms on the unit. If you use a cell phone on the BMT unit, please stay at least three feet away from the equipment. Cell phones may disrupt the system we use to monitor patients. Alcohol and tobacco are not allowed in the hospital. No more than three visitors may be in the room at one time. From 11 p.m. to 6 a.m., one parent or caregiver may sleep in the child s room. Please do not share a bed with the child. It could be unsafe if the child s health changes. Patients and their visitors may not visit another patient s room. Visitors and illness Parents and caregivers: If you have signs of a cold or flu (coughing, sneezing, sniffling, sore throat), you must wear a mask before going into the child s room. Change the mask every 30 minutes or when it gets wet. All other visitors: Do not enter the BMT unit or the child s room if you: Have a fever, diarrhea (loose, watery stools), infections or active cold sores. Have signs of a cold or flu. Were exposed to an illness that may spread. Were exposed to chicken pox or shingles and have never received the vaccine. Wait 21 days before visiting. Have recently received FluMist. Wait 7 days before visiting. Visitors under age 18 A parent or caregiver must fill out a short health form for each child before visiting. A nurse will read it to check for illnesses that may spread. An adult must supervise children who visit. Children under 18 (except for breastfed babies with their mother) may not stay overnight in the child s room. Children in diapers who have had live vaccines must wait 6 weeks before visiting. Live vaccines include chicken pox and MMR shots. For informational purposes only. Not to replace the advice of your health care provider. Developed in collaboration with University of Minnesota Physicians. Copyright 2010 Fairview Health Services. All rights reserved. SMARTworks 521103 REV 05/11.

Page 1 of 1 When to Call for Help Your BMT nurse coordinator: Phone: Your BMT doctor: Phone: Your home care agencies: Phone: Phone: Call us if you notice: A fever of 100.5 F (38.3 C) or higher Shaking chills Increased tiredness Pain or aching Confusion Shortness of breath A change in bowel habits Loss of appetite (desire to eat) Nausea (feeling sick to your stomach) or vomiting (throwing up) that won t go away Weight loss A new rash or change in a rash Bleeding that won t stop A fall or injury Soreness or redness at the site of your central line or PICC Problems with your line, such as leaking or trouble flushing If your child has had a BMT and cannot or will not take the prescribed medicine, call us. Emergency: 911 For a child, non-emergency To speak to a children s BMT doctor or nurse, call: 612-365-8100 Monday through Friday, 7:30 a.m. to 5:30 p.m. After hours, call the Pediatric Call Center: 612-365-1000 Ask to speak to the pediatric BMT fellow. For an adult, non-emergency To speak to a BMT doctor or nurse, call: Adult BMT Office: 612-273-2800 or (toll-free) 1-888-607-0787 Monday through Friday, 8 a.m. to 4:30 p.m. After hours, weekends and holidays, call the hospital: 612-273-3000 or (toll-free) 1-800-688-5252 Ask to speak to the adult BMT fellow. Questions? BMT program office: 612-273-2800 or (toll-free) 1-888-607-0787 For informational purposes only. Not to replace the advice of your health care provider. Developed in collaboration with University of Minnesota Physicians. Copyright 2010 Fairview Health Services. All rights reserved. Clinically reviewed by Elaine Stenstrup, APNL. SMARTworks 521109 REV 06/18.

After You Leave the Hospital For BMT Patients with Autologous Transplants Your care team will work with you to decide when you are ready to leave the hospital. You will be ready for discharge when: Crowds and illness in the hospital. then ask your doctor how often to use a mask. clinic visits. (You will need to go every day at first.) of illness. Preventing infections while you recover Hand washing (alcohol hand-rub) when you are not near soap and water. Mouth care hands often. for a few months. Ask your doctor when it is you come into contact with someone who is ill. getting a crown). your doctor. You may need an antibiotic (germ-fighting medicine) before any work is done. If you are deaf or hard of hearing, please let us know. We provide many free services including sign language interpreters, oral interpreters, TTYs, telephone amplifiers, note takers and written materials.

Places and activities to avoid Diet to infection. make sure you: Avoid these activities: eat raw fish or meat. cannot peel. (before their use-by date has past). Avoid these places: disease or your lines are still in) advised by your doctor. drink alcohol. are being used Pets bring them back home. home a new pet.

Follow-up clinic visits Your first clinic visit will be set up for you before you leave the hospital. You will make your future Work and school You may be able to return to work or school as at first. Shots is a live vaccine. Medicines every clinic visit. what other shots (vaccines) you should have. Medical ID Any blood products you receive after transplant suggest you wear a medical ID band that states this. Activity at least one week before your medicines run out. store-bought drugs or herbal remedies you take. normal to feel weak and tired at first. Sunlight more likely to burn. protection. Do not use tanning beds. If you will have sex or doctor. Driving If your partner has cold sores (herpes) on the are gone. medicines may slow your response time or make you sleepy.

www.fairview.org For informational purposes only. Not to replace the advice of your health care provider. Developed in collaboration with University of Minnesota Physicians. Copyright 2010 Fairview Health Services. All rights reserved. SMARTworks 521107 03/10.