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

SW 503095 BLOOD AND MARROW TRANSPLANT PROGRAM

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 in the Adult BMT Clinic Adult BMT Clinic Clinics and Surgery Center 909 Fulton Street SE Minneapolis, MN 55455 Phone: 612-676-4200 Fax: 612-676-4007 Clinic hours: Monday to Friday, 7 a.m. to 7 p.m. Weekends and holidays, 8 a.m. to noon (in general) After hours: Call the hospital at 612-273-3000 or (toll-free) 1-800-688-5252. Ask for the BMT fellow for adult patients. Outpatient Pharmacy Clinics and Surgery Center 909 Fulton Street SE Minneapolis, MN 55455 Phone: 612-676-4100 Fax: 612-273-2920 Pharmacy hours: Monday to Friday, 7 a.m. to 8 p.m. Saturday 8 a.m. to 1 p.m. (Refill 1 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. On weekends, all visits take place during the morning hours. We will see you as close to your scheduled time as we can. BMT doctors and other care providers are in clinic whenever we are open. Other team members you may see at the clinic include: Nurse coordinators Social workers Pharmacists (on weekends and holidays, use the hospital pharmacy) Interpreters, if needed A dietitian, as needed 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 2010 Fairview Health Services. All rights reserved. SMARTworks 521104 03/14.

Page 2 of 2 Testing We do blood tests, bone marrow biopsies and lumbar punctures (spinal taps) in the clinic. While you are here We offer free drinks in our lobby. If your treatment takes several hours, let us know. We have snacks and drinks for patients. 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) 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.

While You Are on the BMT Unit A Guide for Patients, Family and Visitors 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.

Your care Your health care team provides family-centered care. Our goal is to get to know you and your family so we may best meet your needs. You will meet doctors, nurses and other specialists the day you arrive. You will receive expert medical care from our highly skilled care team. They will assist you before, during and after treatment. Please speak to your nurse if you have any questions about these guidelines. We are here to keep you as safe and comfortable as we can. Nursing care As your needs change, the nurses who care for you may change as well. temperature every four hours or as needed. These checks are done only by hospital staff. Family members may not do them. measure your output of urine and stool. Some patients are weighed twice a day. line. We do this at 4 a.m. and as needed. we will swab your nose, throat and rectum. We may also take samples of urine and stool. line every three days or as needed. three days. is for your safety. 2

Medical care A team of providers cares for each patient. The doctor who leads your team will be in charge of your care. Each morning a member of the BMT team will examine you, discuss your care with team 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 care plan. They are the most experienced persons on the team. Fellows: doctors who are training in hematology (study of blood and related Nurse practitioners (NPs): certified for advance nursing practice in BMT. Physician assistants (PAs): providers licensed to provide care delegated by a doctor. Caregiver s role Your caregiver helps with your care at every stage of the transplant process. We think of him or her as a member of the care team. We invite your caregiver to ask questions, take part in rounds (the team s daily visits in the Tips for Caregivers We urge you to take breaks away from the BMT unit. You need to take care of yourself to help prevent illness. other caregivers over coffee and snacks. The time and place will be posted on the unit. If you need extra support, please let us know. You may meet with a social worker or chaplain. Residents: doctors who are training in BMT as part of their program. 3

Other BMT team members Nurse coordinators work with BMT doctors to plan patient care, testing and treatment. They will also coordinate your care plan after you leave 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. ietitians are experts in nutrition. They will work with the care team to make sure you are well nourished during your stay and after you leave. Pharmacists are experts in managing the medicines used in BMT. Each day they will review your medicines with the doctors. They will also manage your medicines after you leave the hospital. You will receive physical (PT), occupational (OT) and speech therapy, if needed. Intensive care If you need intensive care, we will move you to BMT unit. Your BMT team will still direct your care. The nursing staff in the ICU are trained to care for BMT patients. We will include other specialists as needed. Your caregiver may move with you. Some of the routines in the ICU are different. 1. Caregivers may sleep in the room on a recliner chair. 2. You may not use cell phones on the unit. 3. We may ask your caregiver to leave the room when the nurses report to one another. There are times when they need to discuss private details about other patients. 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 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. 4

Your safety Room safety Your room Your room has been assigned based on your current needs. We may need to move you to another room on the BMT unit to do a complete cleaning of the room. Any item you bring into the room must have been washed or cleaned with germ-fighting not have them. time, tape will cause the paint to chip, and this could be harmful to you. Ask your nurse about using 3M Command Strips. This will help prevent falls. than 45 seconds, an alarm will sound. is beeping. Only staff members may touch these items. Food that may harm you. 4-225. Please label all food with your room number and the date. your safety, unlabeled food will be thrown out. in a sealed or covered container. trays. If a meal tray has not been removed from the room, nursing can help you. 5

Cleanliness and hygiene chemo is over, you must shower at least every other day. When you shower, you should: Unplug the IV pump before bathing. Protect your central line. Cover the bandage with plastic wrap or another barrier. We can help you do this. Tape the IV lines to your skin. After a bath or shower, remove the tape. Wipe all connection points with alcohol. when not in use. This helps stop the growth of germs. Activity We urge you to be out of bed three times a day, or as often as you are able. Even being up a short time is good. Once BMT treatment begins, you must wear an N95 mask every time you leave the room. If you received your own stem cells (autologous transplant), you may walk in the hall anytime. your room. If you received donor stem cells (allogeneic transplant), you may walk in the hall if you have 500 for three days in a row. You must wear an Hand washing or shower. Public bathrooms are near the elevators. Family members may ask to use a private shower room. hands with soap and water for 15 seconds the first time they enter the room each day. 15 seconds when going back in. soap and water. 6

For visitors Check in at the desk in the main lobby. outside the room. Ask at the unit desk for a lock for the locker. bathroom. Public bathrooms are near the elevators. Visitors and illness Caregivers: must wear a mask before going into the room. Change the mask every 30 minutes or when it gets wet. If you have a fever, please stay home. All other visitors: the patient s room if you: infections or active cold sores. please stay at least three feet away from the equipment. Cell phones may disrupt the system we use to monitor patients. the hospital. have never received the vaccine. Wait 21 days before visiting. at one time. room overnight. patient s room. before visiting. Visitors age 16 and younger form for each child before visiting. A nurse will read it to check for illnesses that may spread. the room. include chicken pox and MMR shots. 7

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 521102 03/10.

Page 1 of 1 Comfort Menu Remedies to Enhance Your Comfort Please read our Comfort Menu for remedies we offer to help with your comfort and sleep. Choose as many items as you wish. You may request these services at any time. However, some services take time to prepare. Please allow up to 30 minutes for your personal care to begin. Comfort Menu Nursing staff offer you the following services: Hand massage using lotion Slow-stroke back massage using lotion Aromatherapy: Lavender or peppermint oil for you to breathe in Dear Patient, It is our pleasure to care for you. Your health and comfort are important to us. We invite you to share feedback and ideas on how we can tailor your care to fit your needs. We are here to serve you. Be well, Nursing staff of the University of Minnesota Medical Center, Fairview Ear plugs Eye masks Warm drinks: A choice of warm milk or herbal tea Deep breathing: Help slowing your breathing Guided imagery: A CD that guides you through restful mental images Instrumental music: A CD of music for resting Journal: A blank notebook for your personal use Fan: A small electric fan that moves back and forth, providing white noise and cool air Acupressure: A wrist band that puts slight pressure on an area of the wrist. This helps relieve sleep problems, anxiety and nausea (upset stomach). For informational purposes only. Not to replace the advice of your health care provider. Copyright 2012 Fairview Health Services. All rights reserved. SMARTworks 521262 REV 05/13.

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 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 BMT and cannot or will not take the prescribed medicine, call us. Emergency: 911 For a child 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 To speak to a BMT doctor or nurse, call: Adult BMT Clinic: 612-676-4200 Monday through Friday, 7 a.m. to 7 p.m. Weekends and holidays, 8 a.m. to noon After hours, 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) 1-888-601-0787 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. SMARTworks 521109 REV 11/11.

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.