1. science
2. medicine
3. surgery
4. transplants

Stem Cell Transplant
Admission/Discharge Book
This handbook has been developed by the BMT nursing team at SUNY
Upstate Medical University. Blood and marrow transplantation is an
aggressive therapy used to treat a variety of diseases. Your experiences
before, during and after your transplant can be viewed as a journey. This
handbook has been developed to answer your questions and to be used
as a resource for many topics related to your admission, what to expect
while you are an inpatient, and what to expect when you are discharged.
Transplant can be a difficult time on you and your family, both physically
and emotionally. Please review this handbook carefully and write down
any notes or questions you may have. Our goal is to provide you with the
best care during this challenging time. We wish you the best of luck in
your courageous endeavor to pursue this treatment.
Upstate Medical University
OUR VALUES
• We drive innovation and discovery by empowering our university family to bring forth new ideas and to
ensure quality.
• We respect people by treating all with grace and dignity and embracing diversity.
• We serve our community by living our mission.
• We value integrity by being open and honest to build trust and teamwork
Travel to Upstate:
From Points East of Syracuse: Take the New York State
Thruway (I-90) west to exit 36. Take 81 South to the
Harrison Street Exit. At the second traffic light make a
left onto Adams Street and follow signs to Main entrance and parking garages.
From Points West of Syracuse: Take the New York
State Thruway (I-90) west to exit 39. Take 690 East
to 81 South to the Adams/Harrison Street Exit. At the
second traffic light make a left onto Adams Street. Sarah Loguen is the first light. Take a left and follow
signs to parking garages.
Nursing Philosophy:
The Transplant Unit nursing staff is
dedicated to the support and care of
patients and their families undergoing
transplantation. We are committed
Parking Information:
Parking stickers are available from the parking office,
Monday – Friday, 7am to 4pm. Parking stickers are
also available from the Ambassadors in the main lobby
during off shifts, weekends, and holidays. Weekly and
monthly passes are available from the parking office,
Monday – Friday, 7am to 4pm. to excellent holistic care for all of our
Housing:
patients and their families. Together,
Sarah House: Guests are limited to immediate family members or support persons of the hospitalized
patient. with other disciplines, we foster a
climate of respect, support, education,
and cooperation which facilitates
communication among the health care
team, patients, and families. We are
dedicated to promoting quality of life
and providing a compassionate, safe
environment where meeting the physical
and emotional needs of our patients and
their families is a priority.
Sarah House
130 Roberts Ave.
Syracuse, NY, 13207
Phone: (315)475–1747
For further information regarding housing call the
Continuum of Care at (315)464- 6161.
No Smoking Policy:
Upstate Medical University has a strict NO SMOKING
POLICY. Smoking is not permitted anywhere on
hospital property. If you currently are a smoker, staff
will work with you and obtain medication/patch to
help you quit. We are dedicated to the overall mission
of curing cancer, and Cigarette smoking is known to
be a leading cause of cancer. Welcome:
SUNY Upstate Medical University welcomes you to our Stem Cell Transplant Unit at University Hospital. We
care for people who are undergoing a Bone Marrow Transplant and/or Peripheral Blood Stem Cell Transplant. Our center does both Autologous and matched sibling Allogenic Transplants.
Autologous transplant- patient receives his/her own stem cells.
Allogeneic transplant - patient receives stem cells from a matched sibling donor.
Transplant Unit Room:
Patients stay in a private room which has a special
HEPA air filtration system. This filters and cleans the
air. The room is cleaned daily. It is essential for everyone to wash their hands upon entering and exiting the
patient’s room.
The nurse will explain how to work and locate call
bells, lights, bed and shower. The nurse will also orient
family/patient to kitchen and rest room/showers for
family members. You will be oriented to the unit and
kitchen area, including the ice machine, refrigerator,
freezer, toaster and microwave.
Each room includes a private bathroom/shower, a
phone, and TV. There is a $9.00 charge per day for the
phone and T.V. service. The unit does have lap top
computers available for patient use. Check with your
nurse for availability during your stay. You may ask
your nurse for the availability of the unit’s DVD and
computer games collection that you can borrow from.
Also, TIGR system (patient education/music stations)
is available through the t.v. system free of charge. See
your nurse for questions.
You may bring in new or freshly laundered blankets
or quilts, new pillows (not down pillows) that are still
in the package from the store, and one new stuffed
animal. There is no laundry available for personal
items and blankets and quilts must be washed at home
at least weekly. Clothing needs to be changed daily. Slippers or shoes need to be worn whenever you are
out of bed. Meal times are approximately 7:15 am, 11:30 am, and
4:45 pm. A catering associate will come to your room
daily to take your menu choices for each meal.
Transplant Unit Visitor Information:
Protecting the patient from infection is important. We
are a “patient family centered care” oriented hospital
and encourage visitors at any time. The following are
unit specific guidelines:
• One person may stay the night; each room has a
chair that folds down flat, or a sleeper sofa.
• There is a limit of 3 visitors at a time in the room.
• Children under 12 are not allowed to visit on the
unit.
• No one ill may visit. If you have received oral
polio or chicken pox vaccine within the last eight
weeks you may not visit.
• If a visitor has been exposed to any illness within
the last three weeks, he/she should inform the
nurse before entering the patient’s room.
• A “No Visitor” time can be made by the nurse
and/or patient.
• Visitors and patients may not visit another
patient’s room.
• Wash hands before entering a patient’s room, or
immediately upon entering the room if there are
no dispensers or sinks in the immediate area.
• Coats and other belongings must be left outside
the patient’s room. There are 2 closets located in
the vestibule just prior to entering the transplant
unit. Please do not leave valuables (purse/
money) in the closet.
• No fresh or artificial flowers are allowed at any
time.
• The bathroom is for patient use only. Visitors may
use the public restrooms near the family waiting
room.
• Patients are allowed to have one small NEW
stuffed animal in the room.
• The IV pumps have alarms that may beep. Please
notify nurse when pumps alarm. Do not attempt
to reset pump.
• All fluid intake and output is recorded. It is
important that visitors and patients do not empty
or fill any containers.
• Visitors may eat/drink in the patient’s room, and
must dispose of their trays outside the patient
room. Please do not share your food with the
patient.
• Patients may not eat from visitors trays.
• More information to follow related to diet while in
hospital. (See diet and nutrition section).
• A recurrent visitor pass is available for the primary
caregiver allowing them to bypass the main desk
in the lobby. • A reduced weekly parking rate is available from
the parking office. Daily parkers can receive a
sticker at the information desk for a reduced rate.
Patient responsibilities:
There are a number of things that you will be asked
to do throughout your stay that will help you to be
discharged as soon as possible with the fewest amount
of complications.
• Shower daily to remove the chemotherapy and
bacteria from your skin, reducing the chances of
skin breakdown and infection.
• Walk at least three times daily will help prevent
pneumonia and blood clots and maintain your
mobility and strength for discharge.
• Save all urine, vomit and stool to be measured by
the nurse. The nurse needs to know exactly the
amount you are drinking.
• Use your Inspirex at least 10 times an hour while
awake.
• Eat your meals to keep your gut functioning and
help you heal.
• Drink fluids to keep hydrated.
• Oral care as instructed by your nurse.
• Rectal care after having a bowel movement.
• Report pain, soreness, redness, rash, bleeding or
any type of discharge to your nurse.
• “Speak Up”, don’t be afraid to ask for assistance. • “Call, don’t fall”- if you feel weak or need
assistance use your call bell and have a nurse help
you.
Protective Isolation:
Good hand washing is
your best line of defense against infection. All visitors and staff
will wash their hands
prior to, or immediately
upon entering your
room. It is important
for you to wash your
hands after using the
bathroom, before eating, and before mouth
care.
The door to your room will be closed at all times. A
special airflow system is exchanging the air in your
room frequently to help keep your environment as
clean as possible. Leaving the door open defeats the
system. When your White Blood Cell count is low,
you will need to wear a mask whenever you leave your
room. When walking in the transplant hall you may
wear a blue mask, when you leave the unit to go to
other departments you will wear an orange mask. You
will only be allowed to leave the unit for medical tests
such as x-rays.
Loss of cells in the intestines may cause diarrhea. To
lessen rectal skin irritation, we will provide you with a
protective barrier to apply after using the bathroom.
Activity:
Coughing & Deep Breathing/Use of Incentive
Spirometer:
It is good for your health to be as active as possible
during your stay in the hospital. By continuing to stay
active, you will help prevent problems with your heart
and lungs, as well as help maintain your strength. Exercise also helps fight fatigue, nausea and depression.
A combination of rest and exercise is part of a healthy
lifestyle. Walking in the hall and sitting in a chair
several times a day will help prevent lung infections
and maintain muscle tone. This will also help improve
circulation. Even a small amount of exercise offers
some benefit.
Mouth and Skin Care:
The cells that line your mouth and intestines, and
those that grow hair can be destroyed with chemotherapy. You can expect to lose all or most of your hair
for a period of time. The loss of cells in your mouth may cause sores or raw
spots. You will be taught a mouth care program that
combines cleansing, inspection and treatment. Frequent mouth care may lessen the severity of mouth
sores and will help prevent oral infections. A soft
bristled toothbrush is recommended. If needed, pain
medications will be given to control pain from mouth
sores. When your platelet count falls below 50,000
you must avoid foods that may cause injury to your
mouth such as popcorn and chips.
When blowing your nose, use care to prevent nose
bleeds. Avoid picking your nose. Notify your nurse if
you notice blood on your tissues.
Once your platelet count drops below 50,000 you may
not shave except with an electric razor. You may not
cut your nails, but you can use a nail file.
Once a day you will shower to decrease the number of
bacteria on your skin. Please inform the nurse if you
note any open, red, bleeding or tender areas anywhere
on your body.
Always wear some type of footwear when you are out
of bed. This helps to protect you from injury, bleeding
or infection.
You will be encouraged to use an Incentive Spirometer
or practice coughing and deep breathing exercises every one-two hours while you are awake. This will help
to prevent pneumonia and other breathing problems.
Central Lines/IV therapy:
Trifusion catheters and Infusaports, are special catheters, surgically placed, which allow us to give you
medications, transfusions, nutrition and access to
draw your blood. The catheter will probably stay
in place for up to a month after your have been discharged. Some patients will also have a PICC line
inserted into their arm if more access for medications
is needed. The PICC line will be discontinued before
you go home. Specific procedures and dressing changes will be followed to keep the catheter exit site clean.
If you have a Trifusion catheter you or a family member
will be taught how to care for it at home.
You will be receiving IV fluids from admission until
just prior to discharge. Your IV fluids will be running
through infusion pumps which may beep/alarm on
occasion. If your pump beeps/alarms, please ring for
the nurse, do not attempt to silence the alarm or “fix”
the pump. It is very important to keep the fluids running. You will also be receiving many IV medications
through your IV line. You will not be routinely disconnected from your IV lines.
Intake/Output
Relaxation:
It is required that you save all urine, vomit and stool
output to be measured by the nurse. Each room has a television and a telephone. We encourage you to bring in your favorite music CD’s and a
player.
The nurse needs to know the exact amount you are
drinking. If you or your family get something to
drink please let your nurse know. Eating is important
to keep your gut functioning and to help you heal. Drinking is important to keep you hydrated.
We also have a limited number of computers, DVD’s,
and computer games available for your use. Let your
nurse know if you would like to use one.
Relaxation techniques learned at home or from our
staff may also be helpful. We would be happy to help
you with relaxation exercises if you find them helpful. On the television there are also specific channels (free)
which provide soothing music and pictures to watch. This is another way to help you relax.
Diet and Nutrition:
For your protection, you will be on a reduced bacteria
diet and will not include any fresh fruits, vegetables,
raisin bran, yogurt with active cultures, pepper or
dried fruit. Except for your main meals, most food is
from pre-packaged individual servings such as cans
of soda, pudding, and jello. Food brought in from the
outside must be pre-packaged in individual servings. You will not be able to have food prepared outside the
hospital (such restaurant/fast foods). Other restrictions will be discussed with you by our nutrition and
nursing staff. Your individual likes and dislikes will be
considered to provide the best possible nutrition and
the most appealing diet within the protective guidelines. Nutrition is a key factor in your health. It is important
to eat and drink plenty of fluids to keep your strength
up. A catering associate will check with you daily and
take your meal order. We also have a small supply of
soups, beverages, milks, juices, ice-cream, puddings
and jello on hand.
Our unit has a refrigerator, freezer, microwave and
toaster for your use. Any foods brought in from home
must be labeled with your name, and date. We are
limited for space so we ask that your family does not
bring large quantities of food at a time.
Medication Teaching:
Hospital Routine
There are many things that will
take place while you are a patient
in the Transplant Unit starting
from the time of admission until
you are ready to go home. During
your hospital stay you will learn the
routine and what to expect. You and
your family members will be encouraged to participate
in your care. Some of the routine care will include:
• Upon admission - a variety of paperwork will be
reviewed, and consents will be obtained
• Vital signs (blood pressure, temperatures, pulse
rate, respiration rate, and oxygen levels) are done
every 4 hours - even during the night time. Your
nurse will also assess you for pain at this time. You nurse will reassess your pain after a pain
medication or another treatment for pain has
been performed.
• Blood tests - routine, daily blood work is done
between 4:00-5:00 A.M. The blood is taken from
your central venous catheter. There may be
other times when the nurse will draw your blood
during the day or evening shifts.
• Weights - you will be weighed twice a day in your
bed. Weights are done when your blood is drawn
in the morning, and again at 4PM. • Assessment- At least once every shift your nurse
will do a full physical assessment. This includes
checking your eyes, mouth, skin, abdomen,
heart, lungs, pulses, and your ability to think
clearly. The nurse will ask if you have pain,
nausea or other symptoms or problems. • Showering/Personal Hygiene - you will be
required to take a shower every day.
• Mouth care - to be done a minimum of 4 times
daily (after meals and at bedtime).
• Meals - breakfast is at 07:15, lunch is at 11:30 and
dinner is at 4:45.
• Activity - walking in the hallway at least 3 times a
day and sitting in the chair is a must. • Physician rounds - Physicians usually round
twice a day in the unit, once in the morning and
again in the afternoon. • Antibiotics are prescribed when you first arrive
to prevent infections. If you have a fever your
antibiotics will be changed to help fight an
infection. The antibiotics may cause nausea,
diarrhea and rashes. If you notice anything
unusual please let your nurse know.
• Antifungal medications are usually started on the
day you get your cells to prevent fungal infections
like yeast. You may be changed to a more potent
antifungal medication if you have persistent
fevers that are not responding to antibiotic
changes.
• Antiviral medications are ordered on admission
and will continue even after you go home. If you
are found to have a viral infection the medications
may be changed to better fight the infection.
• Chemotherapy- every patient is admitted on a
specific chemotherapy protocol. This protocol
is determined by the physician to best treat your
disease. You will be asked to, or have already
signed a consent document. This is the road
map for your transplant. You will receive your
chemotherapy before your stem cells are infused
on what we call “minus” days. Depending on
your protocol, you may receive chemotherapy
between days -9 thru day -2. You will be given
specific information about the chemotherapy that
you will receive during your stay. • Antiemetics - before chemotherapy you will
be given medication to prevent nausea and
vomiting. There is usually medication ordered
daily to help control nausea, however if you
start to feel queasy please ask your nurse as there
maybe other medications that can be given to you
as needed.
• Neupogen Injections: Neupogen injections will
begin 5 days after you receive your stem cells
according to your specific protocol and may
continue until a few days after you are discharged. Neupogen will usually be discontinued after your
white count is over 10,000. You will be taught
how to give yourself these injections if you don’t
already know how so that you can give them to
yourself after discharge. • Pain medication -Some patients will require
medication to manage the pain that may be
related to mucositis. The transplant team
will help you manage this pain with oral or IV
medications. It is important for you to tell the
nurses about your pain and the effectiveness
of the medication. Keeping pain under control
is important for comfort and healing. You will
be asked to rate your pain on a numeric scale
0-10. 0 = no pain and 10 = the worst pain you can
imagine. Every time your vital signs are taken,
you will be asked about your pain, and will be
asked again after receiving pain medication.
Peripheral Blood Stem Cell Transplantation:
Your Protocol
A protocol is a road map that is followed from the day
you are admitted until the last day of treatment. It is
a schedule that details the planned treatments you
will receive as well as any “rest” days you may have. Details concerning medications you receive will be
explained in depth to you before they begin. We welcome any questions you may have. You will receive a
detailed consent form and discuss it with your doctor. Your doctors and nurses will be referring to your
protocol and reminding you what point of treatment
you are entering.
The Process: Bone Marrow Transplant Basics:
Peripheral blood stem cell, and bone marrow stem cell
transplants are used to treat patients with malignant
and non-malignant blood disorders and certain solid
tumors. The procedure involves destroying cancer
cells in your bone marrow with chemotherapy and/or
radiation, followed by a “rescue” in which the marrow or stem cells that have been collected are replaced. Stem cells are blood cells that are in the earliest stages
of development.
Your blood cells are produced in a part of your bone
called the bone marrow. White blood cells, red blood
cells and platelets are made and grow there before
entering your blood stream where they carry out many
functions.
• Red blood cells carry oxygen to your tissues
• White blood cells help to fight infection
• Platelets help your blood to clot
When large doses of chemotherapy are given, these
cells, (red blood cells, white blood cells and platelets)
are destroyed and you are at risk for anemia, infection and bleeding. Peripheral blood stem cell transplantation “rescues” people from these side effects of
treatment. By re-infusing healthy stem cells, you will
begin to re-grow these vital blood cells in your marrow. Before your new cells begin to take over you will
be supported with blood and platelet transfusions.
Upon admission to the Transplant Unit, a countdown
period begins. Time has new meaning in the transplant unit. We refer to the days before getting cells
back as “minus” days. (i.e., day -3). During this time
frame you will receive more chemotherapy and/or radiation, and also have a “rest” day. “Rest” day means
you will not receive chemotherapy on that day. Day 0 is the day you will receive stem cells.
All days following transplant are considered “plus”
days. (i.e., +1).
Pre Transplant:
Post Reinfusion/Infusion:
Autologous Transplant: Depending on your protocol, you will be admitted between Day -9 and Day -2. During this time you will be receiving IV fluids, chemotherapy, and antibiotics.
After you have been given the last syringe of stem cells
you will receive Lasix to help flush your kidneys. This
medicine will make you urinate frequently.
Allogeneic Transplant: Depending on your protocol,
you will be admitted between Day -11 and Day -8. During this time you will be receiving IV fluids, chemotherapy, immunosuppressive drugs, and antibiotics.
Reinfusion/Infusion Day: (Day 0)
Two hours before you receive your stem cells the nurse
will increase your IV fluids. You will also be given
medicine to help you relax and to also help prevent
nausea. Up to 3 family members may be present during the reinfusion.
A stem cell lab technician will bring your cells to the
unit frozen in liquid nitrogen.
The actual reinfusion/infusion of stem cells resembles
a blood transfusion except that the cells are pushed
through your catheter with a syringe by the doctor. You will be closely observed for a possible reaction to
the cells as you receive them. A doctor and nurse will
be with you the entire time that you are getting stem
cells. The reinfusion/infusion of cells usually takes 30
minutes or less depending upon the quantity of stem
cells you are receiving. The most common side effect from reinfusion/infusion of stem cells is nausea which is controlled with
medication. Less common side effects are headache,
stomach cramping, facial flushing and coughing. You
may also notice that your urine turns red for a few
hours after receiving stem cells (this is normal).
Before the stem cells were frozen in the lab, they were
mixed with a preservative called DMSO which helps
to protect them from the effects of freezing and thawing. After the cells are reinfused/infused into you, the
DMSO is excreted from your body over the next 24-48
hours by your lungs when you breathe. DMSO has a
peculiar smell (some say like cream corn) and while
you will not smell it except while receiving the cells
(because you become use to it), your visitors may. We
also recommend chewing cinnamon gum or sucking
on candy to help decrease the taste of the DSMO.
On day 0 you will also be started on several vitamins. It takes about 2 weeks for the new cells to grow, or engraft. During this time period you are at risk for anemia, infection and bleeding and you will be watched
closely for signs of these problems and we will take
appropriate measures to control them.
Complications:
Every day there are new advances in stem cell transplantation. Unfortunately we cannot say it is without
any risk. The seriousness of this treatment has already
been discussed with you by your physician. Each
person responds differently to the chemotherapy and
reinfusion/infusion of stem cells. Some side effects
are common, such as fever, loss of appetite, mouth
dryness, nausea and diarrhea while others are rare. Through careful observation and treatment we can
identify any complications you may experience and
lessen their impact on you.
Precautions and what they are all about:
Bleeding Precautions:
When your platelet count is less than 50,000:
• Avoid chips, popcorn, and other sharp foods that
may become stuck in your gums.
• A soft toothbrush and gentle oral care should be
done to prevent bleeding gums. • Avoid flossing your teeth,
• Avoid irritating the internal mucosa of your nose:
this area is very sensitive and can easily bleed. Blowing you nose may cause nose bleeds and
should be avoided.
• Be careful scratching/straining as you may bleed
or bruise
• Shoes should be worn for walking to prevent foot
injuries.
• Do not use razors, clippers, or scissors.
Neutropenic Precautions:
Blood Product Transfusions:
When your white blood cell count is less than 1.0 you
are at an increased risk for infections and must do the
following:
At some point in the transplant process, you will
need to receive red blood cells and platelets. For most
patients, you will receive red blood cells when your
hematocrit (Hct) is less than 24. You will receive platelets when your platelet (Plt) count is less than 16. Your
doctor may decide you need these blood products at
other times. Most patients will receive Tylenol prior to
the transfusion. During all blood product transfusions,
your vital signs will be monitored frequently. A nurse
will stay in the room with you for the first 15 minutes
of the transfusion. You need to tell the nurse immediately if you have any unusual symptoms such as shortness of breath, itching, or pain. After every platelet
transfusion blood will be drawn from your catheter
and sent to the lab to see if your level is adequate.
• You will need to wear a blue mask when you walk
in our hallway. • If you need to travel off the BMT unit for any
reason, an orange mask will need to worn.
• Good hand washing by both you and all visitors is
essential during this time to prevent the spread of
infection.
Fever work up:
If your temperature is 38.0° or over we will continue to
monitor it until it goes down. If you have a temperature of 38.3° for 2 consecutive hours, or spike to 38.5°
at any point in time we will draw blood cultures from
your catheter, and from your arm. We will also send a
urine specimen for culture, do a chest x-ray and start/
change antibiotics. After the first fever we will generally re-culture you every 24 hours until you are not
running a fever.
Fall Precautions:
It is not uncommon for people to become weak or
dizzy during transplant because of medications and
low blood counts. We are concerned for your safety
and my take extra precautions to prevent a fall. You
will be given a “fall precaution” bracelet to wear. More
information will be provided if needed.
ANC/count recovery:
When your white cells start to recover we will start to
measure your ANC (absolute neutrophil count). Neutrophils are a part of the white count. Your ANC must
be at least 500 to be discharged. Your white cell count
should start to rise between day +8 and day +14. Your
red cells will recover next. Your platelet count may
remain low for several weeks after discharge.
Discharge Teaching
Transplant Discharge Information
The transplant process continues after discharge as
you complete recovery. You will have blood work and
follow-up appointments. Your physician will talk with
you about any further tests or treatments that you may
need after discharge.
As you prepare to return home, it is important for you
to know how to care for yourself. We want you to be
able to return to your normal activities as soon as possible, but it is important to follow certain guidelines.
There is no magical time that all restrictions can be
lifted. Infection and bleeding remain a concern until
your counts have fully recovered and your immune
system has had a chance to become strong again. The
transplant team will help you to understand your plan
to keep you healthy.
Discharge requirements: In order to be
discharged:
•
•
•
•
Your ANC must be over 500
You must not have had a fever for 24 hours
You must be off antibiotics.
Your platelets must be high enough to require
transfusions no more often than daily.
• You must be eating at least half of your body’s
daily needs
• You must be drinking over 1 liter of fluid a day.
• You must be able to take your medications as
ordered.
When in doubt always ask!
Signs and Symptoms to call the MD for:
• A fever of 101° or greater (38.5°C). Take your
temperature if you feel sick
• A new or persistent cough
• Shortness of breath at rest or with mild exercise
• Bleeding that does not stop easily with pressure,
blood in urine or stool.
• Bruising easily or that you cannot explain
• Mouth sores, sore throat, or trouble swallowing
• Changes in your urine or bowel movements
especially severe diarrhea for more than 24 hours
• Any new pain or pain with urination or bowel
movements
• Any contact with a person having a contagious
disease especially chickenpox
• Persistent nausea and vomiting
• If you are unable to take your medication for ANY
reason
• If your catheter or port site becomes red, painful,
tender, or has discharge, or you have any other
questions about it
• Skin rash, blisters or yellowing of skin or the
whites of your eyes
Emotions
Stem cell transplant can be a stressful experience,
emotionally and physically, for both you and your
family. Adjustment takes time and as discharge approaches, you may feel both excited and fearful. It
is very common to feel apprehensive about leaving
the hospital. You may have concerns about caring for
yourself at home and about being away from the safety
of the hospital environment. Do not be frustrated if
your life does not return to normal immediately. It
may help to discuss feelings or concerns with the
transplant team.
At home, it is common to feel “down” at times. You
may become frustrated because you still need help
from those around you and you want to be more
independent. It is important to remember that these
feelings are normal. It may be helpful for you to find
a supportive friend or family member to talk to about
these feelings. Meeting with a mental health care professional or a support group has also been helpful for
some individuals post-transplant.
Remember to be patient with yourself and others, pace
yourself, and have reasonable goals.
Home Environment
As you return home a few precautions will help to prevent you from getting infections.
It is recommended that your house be cleaned before
you go home. Floors, carpets, drapes, and furniture
should be cleaned vacuumed or dusted. The bathroom
and kitchen should be disinfected. Your bed linens
should be washed.
If you have well water it is recommended that you use
bottled water for drinking and cooking, unless the
well has been recently tested
and does not have any harmful germs. If you must use
the well water it should be
boiled at a full rolling boil
for one minute and be refrigerated for up to 3 days.
If you have a humidifier,
dehumidifier, forced air
furnace or air conditioning these should be
cleaned, disinfected,
and the filters changed
by someone other than
yourself. The filters should be
cleaned or changed monthly while in use.
If you heat your home with wood you should not
handle the wood. If that is impossible wear gloves and
wash your hands thoroughly after contact.
Avoid contact with bodily secretions from people,
animals, birds and fish. You may not change diapers,
clean litter boxes, fish tanks or birdcages. You may
touch your pet but wash your hand afterwards. Avoid
all contact with reptiles and chickens. It is best if your
pet’s health can be checked to be certain they do not
have an infection.
Activity Allowed
Physical activity remains a very important part of
your recovery. Initially, you may notice that you are
weak and tire easily. Since it takes time to build your
strength, try to space activities to allow for rest periods. Do lighter tasks before heavier ones. Try to adjust
your week to avoid several busy days in a row.
You do need to develop a regular exercise routine at
home. Walking and cycling are very good exercises. Before any exercise, take 3-5 minutes for general
stretching. At the end of your exercise period, gradually decrease the level of activity, allowing your heart
to slow down. This gradual increase and decrease will
help prevent muscle soreness.
Use common sense to choose where, when, and how
long to exercise. In the beginning, avoid vigorous activities that can cause physical harm. Just do as much
as you comfortably can. Until your platelet count is
stable, you should not do anything where you could
fall or have something hit your head (including snowmobile and motorcycle riding). Talk with your doctor or nurse if you have any questions about exercise,
activity, or energy conservation.
Your ability to return to work will depend on your
health, your job, and your personal needs. Please discuss with your doctor the best time for you to return to
work.
Activity Restrictions
You should not mow your lawn, rake grass or leaves,
or garden (digging, planting, fertilizing or harvesting anything that has dirt on it) for one year after your
transplant.
The first 2 weeks after you leave the hospital, avoid
crowded closed in places, especially during the cold
and flu season. Try to choose “off peak’” times to attend church, go to the store or movies. If you can avoid
crowds do so.
Avoid close contact with anyone who is ill. This includes children with typical childhood diseases even
if you have had them previously. It is important to
notify the transplant coordinator immediately if you
are exposed to chickenpox. You may be given a medication to help minimize the exposure.
Driving alone is not recommended until your platelet
count is recovered. If you have concerns please discuss
them with your doctor.
If you plan to travel please discuss with your doctor your
plans and precautions you should take. It may be necessary to contact a doctor or clinic at your destination.
You may golf if you feel able to but you need to avoid
areas where the grass is being mowed.
You may fish but may not use live bait or touch the fish
with your bare hands. Be careful handling hooks.
Hunting is not recommended until your platelet count
is over 100,000. You may not field dress, gut, skin, or
butcher the animal yourself. You may eat the game if it
is safely handled and cooked well.
You should not swim in lakes, rivers, oceans, or pools
or use hot tubs for the first year due to the risk of infection. If you have any questions about this please talk to
your doctor.
Oral Care
Your throat and mouth may remain sensitive for some
time. You should avoid any foods that may irritate
your mouth. Do not use chewing tobacco. Smoking is
not recommended. If you notice any changes in your
mouth or develop new mouth sores, call your physician. When you visit your dentist, inform him/her of
your transplant and be sure your doctor is aware of any
plans for dental work. No dental work should be done
in the first 100 days after the transplant.
You may notice that you have less saliva, especially
if you have received total body irradiation with your
transplant. Sugarless sour (hard) candy may help
increase saliva production. There are also products
available, which replace saliva. Frequent sips of fluids
during meals may be helpful. Saliva production can
improve for up to six months after transplant. Rectal Care
This area is very sensitive and even with good personal
hygiene; you may be bothered by occasional itching,
burning, swelling and discomfort. Gentle washing
after each bowel movement with a mild soap and water
may be helpful. A moisture barrier cream such as Aloe
Vesta may also be helpful, especially if you are having
problems with diarrhea. There are many hemorrhoid
medications available without prescription, which may
also relieve discomfort. Sitting in a warm bath of water
two or three times a day for 15-20 minutes can provide
relief. Plastic basins called sitz baths, which sit over the
toilet rim, are also available for this purpose. Do not use
rectal suppositories, rectal thermometers or enemas.
Bowel Habits
Your bowel habits may have changed since your treatment. It is helpful to remember the following facts
about bowel patterns:
• The quantity of food taken in generally
determines the quantity of stool out
• Certain pain medications and antacids may cause
constipation
• Reduced levels of physical activity may cause
constipation
• Reduced fluid intake may cause constipation
• Certain antibiotics, antacids, and chemotherapy
may cause diarrhea
• It may take some time to get back to a normal
bowel routine
Constipation - Increasing your physical activity and
fluid intake may relieve constipation. If not, a stool
softener, such as Colace may be ordered by your physician. Do not use suppositories or enemas.
Diarrhea - There are many products available without
a prescription for the treatment of diarrhea such as
Imodium and Kaopectate. If diarrhea persists for more
than 24 hours or if it is so severe that you are weak, you
should contact your physician.
Skin Care
Your skin will probably be drier and flakier than usual. There are many creams and gels that relieve dry skin,
but you may find your skin is sensitive to perfumed
products, lanolin, other perfumed products, and other
irritants such as alcohol. If this is the case, read labels
carefully to avoid those products.
Your skin will be very sensitive to sun exposure and
may burn easily, especially if you have received total
body irradiation. Avoid prolonged
exposure to the sun for at least six
months and wear a sunscreen with a high SPF
(at least 30). There are
also products for
your lips
that have
sunscreen
protection.
Insect Bites - If you are going to be outside and at risk
for insect bites, you should use an insect repellent. Use
caution with aerosol sprays as they may irritate your
lungs. If you get an insect bite, use calamine lotion to
lessen the itching. If redness, swelling, pain or drainage develops, call your physician.
Hair - It may take several months for your hair to grow
back. It may not grow back the same color or texture that it was before transplant and may be fine and
sensitive for a while. Use gentle shampoo, one that is
pH balanced. You may also want to use a moisturizing cream rinse. Avoid harsh medicated and dandruff
shampoos. Your scalp will be sensitive to sun exposure
until your hair is thicker. Wear a hat or apply sunscreen to protect from sunburn.
menstrual cycle is common in women and long term
estrogen therapy may be recommended. Tampon use
is discouraged because of infection risk.
Even though sterility post-transplant is most common, it is recommended that you use birth control
until it can be determined for certain. If you have any
further sexual concerns, please feel free to discuss
them with the staff or your physician. We also have
booklets available you can obtain by asking any 10H
staff member.
Nails - You may notice changes in the appearance and
texture of your nails. Avoid tearing your nails or cutting the skin when trimming them. If you wear nail
polish, you should use polish removers containing oil
to prevent excessive drying.
Feet - It is important to always wear shoes or slippers
to prevent injuries. Wear well-fitted shoes to avoid
blisters. Use care in cutting your nails to avoid cutting
the skin.
Nutrition Guidelines
Eyes - Many people complain of dry or tired eyes especially after TBI. If you would like you can use saline eye
drops (natural tears). Some people also find that their
vision is blurry during transplant. Please speak with
your doctor before having your eyes checked or your
prescription changed. It is especially important if you
had total body irradiation that you have regular eye
exams.
You may continue to experience some taste changes
and some food will still be hard to tolerate. You may
also have some mild nausea and vomiting, after you go
home. Inform your doctor if you are having persistent
trouble eating or with nausea and vomiting. Your physician can give you a prescription for an anti-nausea
medication. It may be months before your appetite
completely returns to normal.
Sexual Activity
In order to eat a well-balanced diet with enough calories to maintain your weight, it may be helpful to eat
small meals with snacks in between rather than 3 large
meals. Try to drink at least 6-8 8oz glasses of water or
other fluids daily. Check with your physician before
drinking alcoholic beverages; some of the medications
you may be taking do not mix well with alcohol.
Resuming sexual activity is a normal and important
part of your recovery and will depend on how you
feel. Following safe-sex guidelines, such as limiting
sexual activity to a known healthy partner is important. Sexual intercourse is not recommended when
your platelet count is below 50,000 because of the
risk of bruising and bleeding. Other activities such as
gentle kissing, hugging, and touching should cause no
problem. Anal and oral intercourse may increase the
risk of infection.
Proper lubrication during sexual intercourse will help
prevent irritation and bleeding. Women may notice
that their normal vaginal lubrication may be altered. Using a water-soluble lubricant (e.g. KY Jelly) will
help avoid potential problems. An interruption in the
We recommend that you use caution in going to
restaurants and fast food places for a few weeks after
discharge since food preparation cannot be controlled
by you. If you do go to a restaurant, you should avoid
the salad bar and buffets since this food has been sitting out in the open. You may want to inform your
server to make certain that foods (especially meats and
fish) are well-cooked and fresh vegetables or fruits are
well washed. After transplant, many patients have some problems
when they eat and/or drink dairy products. Dairy
may cause diarrhea and nausea. If this is the case, our
dietitian can help you choose other foods for your diet
to increase your protein and calcium intake. This is
usually a temporary condition.
Washing hands before and after preparing food is as
important as it is to wash before and after eating. Eat
and store food at the recommended temperatures. It is
recommended that all foods be cooked to the recommended temperatures.
Use a separate cutting board for meats that can be
sanitized after use. Eat and store foods at the recommended temperatures. Do not thaw food at room
temperature. Always thaw in the refrigerator or microwave. Wash fresh fruits and vegetables well.
There are some foods that you should avoid after your
transplant:
• Raw or undercooked meats eggs and seafood,
including sushi, dried meats and seafood (unless
cooked), runny yolks or egg whites homemade
eggnog, Caesar dressings and homemade frozen
desserts made with raw eggs.
• Unpasteurized dairy products, cider or juices.
• Yogurt is not recommended unless it has
been pasteurized. Live active cultures are not
pasteurized
• Cheeses that are moldy like Blue, Camembert,
and Gorgonzola. Use only milk and dairy
products that are labeled pasteurized.
• Unpasteurized or raw honey
• Deli cold cuts unless you take them home and
cook them until hot.
• Foods from bulk food bins and free food samples
offered in stores
Medications After Transplant
You will be sent home with several medications. It is
important that you take these medications as ordered.
Some of them are very expensive, so if you need assistance paying for them or use a mail order pharmacy,
please let us know early so that appropriate arrangements can be made.
Most everyone will go home on an antiviral medication, such as Valtrex to prevent viral infections. You
will also go home on an antibiotic called Bactrim unless you are allergic to it or sulfa drugs. Most people still
require a few days of Neupogen until their white count
is 10,000. You will also be sent home with prescriptions for anti-nausea medications and pain medication
if needed. Some people will also need to take electrolyte replacements until their dietary intake improves.
If you have a trifusion catheter you will need heparin
to flush it with.
In general we do not recommend taking supplements
and herbal or natural remedies. If you normally take
these please discuss them with your doctor before
restarting them.
There are some over the counter medications that you
may take if you need them. If you experience heartburn, sour stomach or indigestion then antacids may
be beneficial. Antacids may cause either constipation
or diarrhea, depending on which product you choose. Antacids are available in liquids and tablets. The
liquids are usually more effective. If you are having
problems with excess gas, Simethicone, which is often
added to some antacids, may help. Some antacids may
have minor interactions with other medication you are
taking. Your doctor or pharmacist can help you choose
an appropriate product and give any specific guidelines
that are necessary.
If you are constipated you may take a stool softener like
Colace or a mild laxative. However, increasing your
activity and fluid intake may be all that is required.
Nose and Throat
The lining of your nose and throat may be dry and sore. It is common to have sinus problems after transplant. A saline nasal spray may help with dryness. A mild
decongestant spray may help with occasional “stuffiness.” If you still have problems with sinus congestion
or drainage, notify your doctor.
Pain Relief
As you return home, you may have various aches and
pains in your joints, bones, and muscles. The simplest
remedies are ice and heat. If severe or persistent, you
should notify your doctor. Occasional doses of acetaminophen (Tylenol) can be helpful in relieving mild
aches and pains. You should not take any aspirin or
ibuprofen (Motrin) containing products. Many overthe-counter medications contain small doses of aspirin. Read labels carefully or ask a pharmacist to assist
you. If you need to take pain medication more than a
few times a week, you should call your doctor.
Central Catheter Care
Good hygiene will be important in preventing infection. Continue to care for your catheter in the same
way it was taught to you in the hospital. Flush the
catheter as you have been shown. Change the dressing once a week and whenever it becomes soiled or
wet using a Biopatch dressing as you have been shown. Watch the catheter and exit site closely for any changes such as redness, swelling, or drainage. Call your
doctor if you have any questions or problems.
Medic Alert Identification
It is recommended that you obtain a medical alert
bracelet or necklace after your transplant. The hospital
social worker may be able to assist you in ordering one. Some insurance companies may reimburse the cost. Your medic alert should be engraved with “Stem Cell
Transplant – Use Irradiated & Leukocyte Poor Blood
Products Only.” On the card you carry in your wallet, list your doctor’s name and phone number, your
diagnosis and medications you take. You should carry
this information with you at all times for two years following your transplant.
Cuts/Scrapes/Bruises
If you get a cut or scratch, apply pressure until the
bleeding stops. Clean with soap and water. You may
also clean with hydrogen peroxide and apply an antibiotic cream such as Neosporin or Bacitracin. Unless
very superficial, you should keep the area covered for
two or three days. You should call the doctor if you
develop a fever or if the injury becomes more painful,
red, draining or swollen.
Bruises - If you fall or hit yourself and begin to notice
swelling in the area, apply ice. If you notice that you
bruise more easily, bruise for no known reason, or that
the bruises take longer than usual to fade, call your
physician. This may mean that your platelet count is
low.
Please…
Speak up if you have a question or concern. If you don’t understand, ask again.
We want you to feel informed and confident about the care you are receiving from us.
F85655 Rev. 10/2010