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You, your caregiver, and donor (if receiving an allogeneic transplant) have been approved to come to the VA Puget Sound - Marrow Transplant Unit in Seattle, WA (also known as “the Seattle VA MTU”) to undergo a comprehensive evaluation and if approved, to proceed to a peripheral blood stem cell transplant. It is the VA’s policy that the patient, caregiver, and donor arrive in Seattle on the same day and the caregiver is present throughout the evaluation period on the Marrow Transplant Unit (MTU). To be very clear, you both are being evaluated for your ability to physically and psychosocially adhere to the rigors of transplant and the necessary post-transplant care. If you and your caregiver are unable to arrive at the VAPS MTU together please contact the MTU Social Worker, Cathy Blanchard at (206) 764-2619.
Staff members of the MTU understand that patients and their families have a great many things to learn and think about. We do not expect that you will remember all of this information, but hope that this guide will prove to be a handy reference. Any time questions arise; please ask one of the staff members. Other families and patients are a good source of support, but everyone has unique problems and concerns that require personal staff attention.
Travel to Seattle
Your referring VA Medical Center's Patient Travel Department will make arrangements for round-trip travel for the patient, caregiver, and donor once they are given a scheduled date by the MTU medical team. Most patients travel to Seattle via commercial airline. If you choose to drive and are medically cleared to do so by your physician, pre-authorization from your referring VA travel department is required for mileage reimbursement at the rate determined by your referring VA. Please work out all details with your travel department in advance as it is difficult to receive reimbursement afterwards. If you have questions contact Cathy Blanchard or your referring social worker.
Patients, donors and caregivers are generally scheduled to arrive to Seattle at least one day prior to their scheduled day to report to the MTU. The "one day early" arrival in Seattle is meant to help give you time to get settled into your assigned apartment, get groceries, find your bearings and figure out transportation to and from the hospital.
The day you arrive in Seattle, come directly to the MTU to receive your apartment assignments and packets. See the Apartments page for more details.
Reporting to the Unit
The patient and caregiver need to report by 8:00 AM on your assigned date for blood draws and to begin appointments. The unit is located on the 4th floor, Building 100 of the main hospital. The nurse or the ward clerk will give the patient a schedule of medical appointments. On your first or second day, we will have an introductory “Welcoming Conference” where you are encouraged to ask medical questions. The attending physician will discuss general expectations of the transplant process and the patient will be given consent forms to read and sign. It is helpful to write down questions you want to ask in advance.
Important note: Don't eat breakfast prior to reporting. The patient needs to be fasting from food and fluids from midnight the night before (an approximate 8-hour fast). If you’re taking medications, please take your nighttime dose prior to midnight and bring your morning dose to the medical center to take after the nurse draws your blood. There are two cafeterias on site where you can eat breakfast after your blood is drawn for labs.
Be prepared for a long first day on the unit. In addition to medical tests you will be meeting with team members for assessments and orientation. Bring all medications you brought to Seattle as well as a list of your current medications to this orientation. The patient will be scheduled to meet with MTU Pharmacist on the day they arrive to the unit for evaluation. Please bring a two-week supply of any medications and items that you are using on a regular basis such as supplies that are used for care of a catheter (e.g. Hickman, Groshong, PICC, etc…).
Medications
1. Patients are not allowed to share their medications with another patient (even if both are taking the same medication). It is important that the pharmacist know what and how much of each medication each patient is using to be able to assess his/her response to it.
2. Be advised that it is a felony to transfer/share any controlled substances (narcotics, sedatives) with others, family members included.
3. It is also illegal to provide any prescription medication to another person.
*Caregivers and donors should also bring a supply of medications. The VA is not able to provide medical care to non-VA patients so caregivers and donors should come with a supply of medications to last their stay in Seattle or arrange for refills from their home medical providers.
It is a good idea to bring food and drink or money to purchase food from the cafeteria. There will be some wait time between appointments so also bring reading material or something to occupy your time. The patient should expect to be busy with appointments and should plan to spend long days at the hospital during the first one and a half weeks.
Marrow Transplant Unit Guidelines
Infection Control
Anytime a person’s white blood count is low, especially when their neutrophil count is below 500; he/she is at greater risk for infection. The patient rooms, including the outpatient room, are equipped with a special ventilation system to help protect patients from airborne organisms; however, we do not expect patients to remain in their rooms at all times so there are things they can do to minimize their risk:
1. Doors to patient rooms and the outpatient room must remain closed at all times.
2. Patients and family members are not allowed to access other patients’ rooms. We strongly recommend that patients not visit each other’s apartments as well. Since their immune systems are compromised during the time they are here, patients are at a greater risk for catching and sharing infections. They should ask the staff for assistance if they have something to give another patient while one or the other is in the hospital.
3. Thorough hand washing is probably the most important key to preventing infection. Each room has a sink and germicidal soap. Anyone entering a patient’s room needs to wash his/her hands before touching the patient or items in the room. Foam hand cleanser found outside the patient rooms may be used for disinfecting hands prior to patient contact. Hands should always be washed after blowing the nose, wiping the face or using the toilet.
4. Perhaps the next most important thing is to avoid contact with others whom are sick. Family members and other visitors who are ill may not come to the unit. They will be assessed by the patient care staff to determine when they may return.
5. Children under the age of 12 months are not allowed to visit the unit. Additionally, anyone who has received an oral polio vaccination is not allowed on the unit for two months.
6. Face masks are not recommended. Studies have shown that wearing a mask does not prevent transmission of communicable diseases. If you have concerns about this, please ask your physician or nurse.
7. Patients should avoid crowded areas and should not spend unnecessary time waiting in other areas of the hospital. If the staff in the x-ray department, the clinics, or any other part of the hospital are too busy to take care of you please return to the MTU. You will then be rescheduled for the test (you must inform us of this). Patients may go shopping, to the movies, restaurants, the park, etc.; however, they are advised to go when those places are not their busiest and are asked to avoid crowded areas.
8. Construction areas may pose a significant hazard for transplant patients. Construction dust often contains mold and fungus, which can be particularly hazardous, when anyone is immunosuppressed. Because of ongoing construction projects in some parts of the hospital, patients are not allowed to use the basement cafeteria or the canteen retail store. They also need to stay away from construction projects when they are out and about. Coats should be removed before entering the unit, and may be hung in the family room. Upon leaving the unit, carry coats out and put them on outside to avoid shaking dust in the patient area.
9. Exercise is important while in the hospital, but there are restrictions as to where patients may go for walks. You will receive instructions about where you can go and when, while you are hospitalized. This may change from time to time, but generally speaking, patients should not enter any offices or treatment areas unless directed to by the patient care staff.
10. Air conditioners and fans may be used as long as they are clean and free of dust. However patients should not be around when the filters are changed. Water-cooled air conditioners or other devices containing a water reservoir may not be used.
11. Families should not baby-sit for other children.
Transportation
1. For their own safety as well as the safety of others, patients are not allowed to drive while they are in Seattle receiving their transplant. After returning home, they are advised to have a driving safety evaluation and follow their physician’s recommendation about driving.
2. The VA will provide transportation for appointments (patient and donor), if needed. Either a cab or a cabulance will be provided depending upon the patient’s condition. Families may provide that transportation if the patient is stable. Questions about this should be referred to the outpatient nurse. The VA will not provide transportation for the family members to visit the patient in the hospital.
3. Patients are discouraged from riding with other patient’s family members, but may do so if it is their only option. However, patients should not ride together in the same vehicle.
Personal Services
1. Fax and copy services are not available in the hospital. These services are available at a number of businesses in the area. If you have difficulty locating a place, please refer to the “services” section of the resource guide.
2. Long distance phone calls may not be charged to the patient room phones. Outgoing calls must be placed collect or charged to a calling card. The Seattle VA does not accept collect calls. Any incoming calls must be charged either to the caller’s home phone or to a calling card. (See the “services” section of the resource guide.)
3. Incoming phone calls are received at the secretary’s desk and then transferred to the patient rooms. Patients may request that all their phone calls be held if they do not feel like talking. However, the secretaries will NOT screen calls.
Child Care
1. Families are encouraged not to bring small children with them to Seattle. The hospital is not equipped with childcare facilities. Children under the age of 12 months are not allowed to visit the unit.
2. Young children may NOT be left unattended in the family room or other areas of the hospital.
3. Children may NOT attend a day care center where they may be exposed to childhood diseases.
4. Children ages 5-18 can attend the Hutch School at the Seattle Cancer Care Alliance. Our Social Workers will assist with registration.
5. Otherwise, there are limited options available. Our Social Worker may be able to assist with specific concerns.
Family Room
1. The primary purpose of this room is to provide a place for families to rest and relax during the time they are waiting in the hospital.
2. Pretransplant patients who have a white blood cell count greater than 1000 may use this room for a waiting area, but should remember to avoid it when it is crowded.
3. After beginning their transplant, patients are to use their own rooms or the outpatient room after discharge. Patients are not to spend time in the family room, other than to hang their coats to get something from the refrigerator. Inpatients may not visit in the outpatient room. Inpatients may use the computer in the family room at off times when the room is empty.
4. The upkeep of the family room is the responsibility of everyone who uses it. The floors are cleaned and the wastebaskets emptied daily by the unit housekeeper, but the refrigerator, sink, dishwasher, counters and stove must be maintained by family members. Please refer to the list of rules posted in the family room. If you have specific questions, refer them to the Social Work Assistant or Nurse Manager.
Outpatient Room
1. Family members are NOT allowed to remain in the outpatient room when other patients are in there.
2. Patients need to be fully dressed in street clothes when they come to the outpatient room.
3. If the room is full, the outpatient nurse may ask you to wait in another area.
4. Outpatients spend from one hour to all day at the hospital so they need to be prepared. Outpatients need to bring food and beverages with them if needed. Outpatients also need to bring any medications they need for the day. The outpatient nurse does not have a list of the routine medications that outpatients are taking. The outpatient nurse only has a list of the medications that need to be given in the outpatient room. If you need something special with which to take your meds please bring it with you from the apartments, do not expect us to provide it for you.
5. Please be prepared to drink many fluids, you should arrive with a sports bottle filled with fluids even if you think you will only be at the hospital for an hour or so.
6. Please do not ask for warm blankets because you are chilly, they are to be used for patients experiencing chills.
7. The outpatient room door needs to remain closed for the airflow to function.
8. Please don’t ask to have your blood transfused on the weekend. We try to keep weekend transfusions for emergencies only.
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