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autologous transplant - MUSC Health Powered By Docstoc
					      Hollings Cancer Center at Medical University of South Carolina



                         INTRODUCTION
 This book has been written to help you learn what you need to know about
autologous blood and marrow transplant. If there is anything that you do not
                   understand, please ask a team member.


          The care of you and your family is our primary concern.


Here are some suggestions:


      Do not try to read the book all at once. Take a few days to go over it.


      Write down questions you may have in the book. It is yours to keep.


      Bring this book to your clinic appointments. You may be given
      additional information to add to the book.


      Remember to be flexible. Your scheduled tests and actual transplant
      dates could change for many reasons.




            The more you know, the better prepared you will be.
                             Table of Contents

PRE-TRANSPLANT EVALUATION                                  7
     Insurance                                             7
     Dental Exam                                           7
     Caregiver                                             7
     Scheduling the Transplant                             8
BASICS OF AUTOLOGOUS TRANSPLANT                            9
     What is Bone Marrow? What Does it Do?                 9
     What are Stem Cells?                                  9
     What is an Autologous Blood & Marrow Transplant?      9
    Why are Autologous Blood & Marrow Transplants Done?   10
DOES THE TREATMENT HAVE ANY SIDE EFFECTS?                 10
     Mucositis                                            10
    Hair Loss/Nail Changes                                10
    Nausea/Vomiting                                       10
    Sexual Issues                                         10
    Damage to Other Organs                                11
     Cataracts                                            11
    Fever/Infection                                       11
    Bleeding                                              11
HOW DO I RECEIVE THE BLOOD OR MARROW TRANSPLANT?          12
     Central Venous Catheter                              12
OUTPATIENT TRANSPLANTATION                                13
TRANSPLANT TIMELINE                                       16
                  Table of Contents - continued

WHAT IS MOBILIZATION?                                   17
     Mobilization Instructions                          18
     Mobilization Step-by-Step                          19
     Injection Administration                           20
WHAT SHOULD I DO WHEN MY COUNTS ARE LOW?                22
     Anemia                                             22
     Thrombocytopenia                                   22
     Special Precautions                                22
NEUTROPENIA                                             23
NUTRITION THERAPY                                       24
     Pre-Transplant/Conditioning Phase                  24
     Early Post Transplant Phase                        24
     Recovery Post-Transplant Phase                     24
     Nutrition Support with Parenteral Nutrition (PN)   24
NEUTROPENIC DIETARY GUIDELINES                          25
EMOTIONS                                                26
     Fear and Uncertainty                               26
     Sadness                                            26
     Anger                                              27
     Guilt                                              27
     Fatigue                                            27
COPING WITH EMOTIONS                                    28
THE TRANSPLANT TEAM                                     29
                  Table of Contents - continued
     Physicians                                         29
     Nursing Staff                                      29
     Blood and Marrow Transplant Coordinators           29
     Advance Practice Nurses                            29
     Physician Assistant                                30
     Dietician                                          30
     Pharmacist                                         30
     Chaplin Service                                    30
     Psychiatric Liaison Nurses                         30
     Social Workers                                     30
     Financial Coordinators                             30
TRANSPLANT FINANCIAL SERVICES                           31
LODGING OPTIONS                                         32
     Pre-Transplant                                     32
     During Transplant                                  32
     Post-Transplant                                    32
TEMPORARY HOUSING                                       33
SUGGESTED ITEMS TO BRING TO THE HOTEL AND/OR HOSPITAL   34
     Clothing                                           34
     Personal Care Items                                34
     Food and Drink                                     34
     Entertainment and Inspirational Items              34
HOMESTEAD STUDIO SUITES                                 35
LOCAL HOTEL ACCOMODATIONS                               36
DIRECTIONS TO AND FROM MUSC                             38
                    Table of Contents - continued
CAMPUS MAP                                                         39
GLOSSARY OF TERMS                                                  40
POST HOSPITAL CARE                                                 44
     When Will You Be Ready for Disharge?                          44
     How Can You Avoid Infections?                                 44
     What Activities Can You Do?                                   45
     What About Your Pets?                                         45
     Skin Care                                                     45
     Medications                                                   45
     Bleeding Concerns                                             46
     Sexuality                                                     46
     Diet                                                          46
     Catheter Care                                                 46
 DISCHARGE INSTRUCTIONS                                            47
 CAREGIVER INFORMATION                                             48
      Calling Instructions/How to Call From Outside the Hospital   50
 CAREGIVER RESPONSIBILITIES                                        51
      Daily                                                        51
      Vital Signs                                                  51
      Medications                                                  51
      Intake and Output                                            51
     Communication                                                 51
HELP PREVENT INFECTIONS!                                           53
INTRAMED PLUS                                                      54
HOSPITAL INFORMATION                                               55
                   Table of Contents – continued

     Hospital Phone Numbers                        55
     Medical Center Security                       55
    Chapel/Chaplains                               55
    Smoking                                        55
    ATM Machines                                   55
    Parking Fees                                   55
     Visiting Policy                               55
     Lost and Found                                55
    Cafeteria                                      56
    Patient Mail                                   56
    Gift Shop                                      56
    Pharmacy                                       56
    Guest Relations                                56
    Phone Numbers at a Glance                      56
EXAM AND APPOINTMENT LOCATIONS                     57
IMPORTANT PHONE NUMBERS                            58
                      PRE-TRANSPLANT EVALUATION


       A lot of information will be given to you at your evaluation and clinic visits. It helps
to bring a note pad or tape recorder to the first few appointments. Have a family member or
friend with you for each appointment.

You will meet with a BMT coordinator, financial coordinator, social worker, and outpatient
pharmacy representative. They will talk to you about your transplant and give you a chance to
ask questions. The financial coordinator will get the necessary financial information and talk
to you about any other ways that may help with funding. The social worker will give you
information about out-of-pocket expenses during your transplant and can also give you
information about fundraising.


INSURANCE
Your insurance company must pre-approve the blood and marrow transplant before we can
schedule any dates for treatment. Insurance approval can take 4-6 weeks. Often insurance
companies have special guidelines that their members must meet in order to qualify for a
transplant. Just having insurance does not mean you are automatically covered for the
transplant. We will ask you to come to the clinic to undergo certain tests to look at your
heart and lungs. You may need CT scans, X-rays, a bone marrow biopsy, and blood work
before you are cleared for a transplant. We will check your blood for viruses like Hepatitis
and HIV. We want to make sure you are in the best possible shape to start your transplant.

DENTAL EXAM
It is important to have a dentist examine your teeth before a blood or marrow transplant. You
should have your teeth cleaned and dental work completed before treatment. Tell your
transplant team member if you have any problems with your teeth.

CAREGIVER
Patients and their families will be asked to have a plan to care for the transplant patient
during and after the treatment. Caregivers must be available to assist with the care of the
patient during and after the transplant process. Caregivers may be friends or relatives and
can change through the treatment, however, they must be able to follow directions for
patient care and be able to drive you to and from the clinic. It is necessary for the patient to
have a caregiver in order to have the transplant.




SCHEDULING THE BLOOD AND MARROW TRANSPLANT
Once you are financially and physically cleared for transplant the BMT coordinator will
make a calendar with the days of your treatment on it. There are several different treatment
plans for transplant. The BMT coordinator will review your treatment plan schedule with
you and answer any questions. Remember, that schedules may change and it helps to be
flexible. Your physician will choose the chemotherapy and the type of transplant that is best
for you.
                                        THE BASICS OF AN AUTOLOGOUS
                                                TRANSPLANT




Blood and marrow transplantation is an involved process. It may be difficult trying to
understand it when you are afraid and uncertain. Blood and marrow transplants can offer a
chance of a cure for diseases that were once incurable.


WHAT IS BONE MARROW? WHAT DOES IT DO?

Bone marrow is a spongy material found in the spaces in the center of bones. It is the
“factory” where your body’s blood cells are made.


WHAT ARE STEM CELLS? (Also Called Peripheral Stem Cells)
Inside your bone marrow are worker cells called stem cells. Their job is to produce three
types of blood cells: red blood cells which carry oxygen (fuel) from you lungs throughout
your body; white blood cells which fight infections and protect your body from gersm;
platelets which form clots to stop the bleeding when you get cut.


WHAT IS AN AUTOLOGOUS BLOOD OR MARROW TRANSPLANT?

In an autologous blood or marrow transplant, some of your own bone marrow or stem cells
are frozen and stored for later use. Unfortunately, the chemotherapy/radiation cannot tell the
difference between cancer cells and normal cells, so that bone marrow is also destroyed.
After your chemotherapy and radiation are done, your own bone marrow/stem cells are given
back to you intravenously (through a tube that enters a vein). The cells find their way back to
the marrow space and begin to make more blood cells. You may receive both marrow and/or
stem cell during your transplant.




                                                                                             9
WHY ARE AUTOLOGOUS BLOOD AND MARROW TRANSPLANTS DONE?

Some types of cancer need to be treated with very high doses of chemotherapy and/or
radiation to be most effective against the cancer cells. The high dose therapy could
permanently hurt your bone marrow, making it unable to make healthy blood cells. By
returning healthy bone marrow after chemotherapy/radiation, the transplant rescues your
body. Sometimes people have their blood or marrow frozen and stored in case the cancer
comes back in the future. This stored blood or marrow can be kept for several years.


DOES THE TREATMENT HAVE ANY SIDE EFFECTS?

Side effects from an autologous blood or marrow transplant may occur from high-dose
chemotherapy and/or radiation. Chemotherapy/radiation can cause the following side effects:


MUCOSITIS

Your entire digestive system may be affected by the treatment. Your mouth and the lining of
your stomach may become red and sore. You may not be able to eat for several days. When
you are unable to eat, you may be given nutrition through an intravenous line.

HAIR LOSS/NAIL CHANGES

This is usually temporary. Your hair will fall out about 2-3 weeks after your chemotherapy.
Your hair will grow back but may be different than before your transplant. It may be thinner
or curlier than before. New nails may begin to grow under your old nails as well.

NAUSEA/VOMITING

You may feel sick to your stomach during chemotherapy and after the transplant. Your sense
of smell and taste may change, too. These side effects lessen as you progress through your
transplant.

SEXUAL ISSUES

During your transplant you will not be able to have sexual intercourse. You and your partner
may resume sexual activity once your blood counts have recovered to safe levels. Usually
this is when your platelets are above 50,000 and your white blood cell count is above 1,000.

You will receive many blood transfusions during your transplant. There is a small risk of
contracting the AIDS (HIV) virus and/or hepatitis from the blood products you receive. To


                                                                                         10
protect your partner, you should use a condom during sexual intercourse. Your blood will be
tested about 5 months after your last transfusion to ensure that you have not been infected.

You may not be able to have children after your transplant. However, you should use birth
control if your doctor is not certain of infertility. There may be an option to store sperm or
eggs prior to transplant. Speak with your doctor about these concerns.

DAMAGE TO OTHER ORGANS

Your liver, lungs, kidneys, or heart may be hurt by the high dose chemotherapy. You will be
watched closely by your transplant team for any problems for 3-6 months after your
transplant.

CATARACTS

Radiation and high dose chemotherapy increase your chance of getting cataracts following
your transplant. It is important to continue to have your eyes checked after transplant.

FEVER/INFECTION

When your white blood cell count is low, you may get fevers and infections. Your doctors
will monitor you closely and treat you with many different antibiotics during your transplant
to fight infections.

BLEEDING

After the transplant your platelet counts will be low until your new marrow is able to make
platelets. You will need platelet transfusions frequently to reduce the risk of bleeding.




                                                                                           11
               CENTRAL VENOUS CATHETER (CATHETER)

You will need a central venous catheter (a catheter usually placed in a large vein in your
chest)placed before you start your treatment. This is an external IV access with tow or three
separate ports which will be placed by a radiologist.




The catheter placement is an outpatient procedure. You will be at MUSC for about 6 hours
and may be able to go home afterward. It is necessary to have someone bring you here on
that day and pick you up after the procedure. The catheter will stay in place for as long as
your doctor feels it is needed.


After your transplant, a company specializing in home infusions will teach you and your
caregiver how to take care of the catheter. You will learn how to flush the lines and change
the dressing. There is a chance that the catheter may become infected or clotted and need to
be replaced.



                                                                                          12
                     OUTPATIENT TRANSPLANTATION


This summary is intended to give you and your caregiver information about the outpatient
Blood and Marrow Transplant Program at the Medical University of South Carolina
(MUSC), so you will understand the process and know what to expect.


We know much more about blood and marrow transplantation (BMT) than we did several
years ago. Patients no longer have to live in a bubble and can lead more normal lives during
their transplant. We have been doing BMTs for many years and have found ways to improve
treatment by preventing side effects of chemotherapy and of transplant.


Because we have been able to reduce the risks for patients, they do not have to be in the
hospital for long periods of time. One of the ways that many hospitals have found to provide
the care patients need, is to provide most of the care in a clinic setting during the daytime
hours. This is called outpatient treatment.


The Medical University of South Carolina (MUSC), being one of the leaders in the field of
transplant, is doing autologous transplants on an outpatient basis. At times during your
treatment, your care will be provided in the Hollings Cancer Center clinic treatment area.
You and a caregiver will stay nearby in local housing. You will need a caregiver to stay with
you at all times so that the caregiver can help with some of your care during the night. A
caregiver can be a family member, spouse, friend or an adult child. Before beginning your
treatment as an outpatient, we will teach you and your caregiver how to take care of yourself
during transplant. We require each caregiver is with you for a minimum of a week at a time
for safety issues and continuity of care during your transplant. Caregiver changes must occur
on Monday – Friday mornings. Both caregivers must come to clinic where we will be able to
review teaching with both caregivers. We may request that you show our team a schedule of
your caregivers during transplant. It is also necessary that you have a “back up” caregiver for
emergencies. While in local housing you and your caregiver will do most of your care, but
the medical team will be available by phone in case you need assistance. A special nurse



                                                                                            13
may visit you in your local housing a few times to help teach you and your caregivers how to
take care of any intravenous (IV) medications you may need.


You and your caregiver will meet with the Blood and Marrow Transplant Coordinator and a
pharmacist before beginning outpatient treatment. This is a scheduled visit called the
caregiver review day and takes about two hours. Every day, the staff will review your
progress to make sure you are taking your medicine correctly and to answer any questions
you may have. The caregivers will be shown how to track temperatures and blood pressures.
The BMT Coordinator will go over caregiver responsibilities and explain what a caregiver
needs to do. A pharmacist will teach you about your medications, their side effects, how to
take them, and how to keep track of when medication(s) are given.


Each day at about 7:30A.M. you will go to the treatment area in Hollings Cancer Center.
Your caregiver will be responsible for driving you to and from the clinic. The BMT team
will review your progress and the nurses will provide most of your care for the day. This care
includes some medications given intravenously (IV) like chemotherapy, blood transfusions,
and other treatments. Your blood and marrow transplant may also be done in the clinic
treatment room. When the nurses have finished your care for the day, your caregiver will
drive you back to your local housing.

At certain times during your transplant, you will require care around the clock by nurses and
doctors. When you doctor feels you need this care, you will be admitted to the inpatient
BMT unit in the main hospital at MUSC. During this period of time, the nurses will
provide your care and you are not required to have a caregiver stay with you. There is a
recliner in case someone wishes to stay overnight in the hospital room.

While you are hospitalized, your insurance will no longer pay for the hotel room. Your
insurance will cover either the cost of the hotel room during outpatient transplantation, or it
will cover your inpatient stay in the hospital. While you are hospitalized, the hotel room
will be available, at a reduced rate, as long as the facilities are not needed by another patient
undergoing transplantation. Please understand that these blocked rooms are provided for


                                                                                             14
patient’s first and your caregiver may be asked to check out or move into a different room.


As mentioned before, many hospitals across the country are doing outpatient care, not only
for blood and marrow transplants, but also for many other diseases such as kidney
transplants, liver transplants, and high-risk pregnancies. Patients and caregivers have
preferred outpatient care to inpatient care because they have more freedom, more input and
control over their day-to-day lives, and they do not have to stay in the hospital for such a long
period of time. If at any time your doctor feels you need to be in the hospital, you will
immediately be admitted.


After you are discharged from the transplant phase of your treatment (when your blood
counts have recovered, when you no longer have a fever, and when your physical condition
has stabilized), you may be required to stay in the area for approximately 1 week. Your
caregiver will need to remain with you during this time. The cost of lodging will longer be
covered by insurance and the responsibility will be yours. Other choices are to stay with
friends or family in the area, to stay at another apartment that you find yourself, or to stay in a
hotel.

Outpatient care not only prevents you from having to stay in the hospital for your whole
treatment, but also controls the cost of providing your care.




                                                                                               15
     AUTOLOGOUS PERIPHERAL STEM CELL TRANSPLANT

              (To collect cells needed for transplant)

Pheresis catheter                           Chemotherapy
   placement                                 For stem cell
                                            “Mobilization”




                                              BMT Clinic to
                                               check labs




                                               G-CSF or GMGSF
                                                       Or
                                                   Neupogen
                                                Injections daily




                                                 BMT Clinic to
                                                  check labs


               Pheresis




                       High dose
                    Chemotherapy for                     TRANSPLANT!
                       transplant




                                                                   16
                          WHAT IS MOBILIZATION?


Stem cells are your blood factory. They live in your bone marrow. The way we collect stem
cells (bone marrow cells) is to use chemotherapy and growth factors to help move the stem
cells into the bloodstream. Growth factors are given as a subcutaneous injection (under the
skin in the fatty layer). You may give yourself the shots or have someone help you. The
actual process of collecting cells is called HEMAPHERESIS.


Hemapheresis takes about five to six hours a day and it may take 1-5 days to collect enough
stem cells for a transplant. You will lie in bed while connected to a Hemapheresis machine
that separates the stem cells from the blood. It is not painful but may be boring. You may
bring video tapes, books, games, or a computer to us during this procedure.




                                                                                        17
               MOBILIZATION INSTRUCTIONS

 DO NOT eat or drink anything after midnight the night before catheter
  (Central Line) placement
 DO NOT take Tylenol or any other medication before checking with
  your BMT team
 DO NOT take additional doses of your GCSF (growth factor) unless
  scheduled on your calendar
 DO NOT flush catheter until notified by the BMT team (it contains
  high-dose heparin until all stem cells are collected)
 DO NOT hesitate to call your BMT coordinator
 DO call for temperature >100.5F, chills, pain/swelling/redness at
  catheter site or any other place, burning or pain during urination,
  bleeding of any sort (excessive bleeding or drainage from catheter
  site), blood in urine or stool, any other unexplained pain or physical
  problem
 DO know that IntraMed Plus will be doing all your catheter care
  (dressing changes, flushing, and cap changes) and teaching. IntraMed
  Plus can be reached at 843-763-2080
 DO know that your catheter dressing needs to be changed 24 hours
  after placement (Small amounts of blood/drainage is OK)
 DO check calendar frequently and follow schedule for growth factor
  administration
 DO know that GCSF (growth factor) can cause flu like symptoms such
  as low-grade fever, bony pain, muscle aches, headaches, and
  nausea/vomiting
 DO take Coumadin 1mg by mouth starting the day after catheter
  placement and continue to take Coumadin as directed until notified by
  the BMT team.
 DO keep Tylenol on hand to take ONLY IF instructed to do so by
  BMT team.
 DO bring all medications to clinic every day
 DO inform your BMT team of your housing arrangements and
  telephone numbers where you can be reached.
 DO BE FLEXIBLE!!! We are very patient oriented and your
  circumstances will be arranged in a way that best guides your plan of
  care.



                                                                     18
               MOBILIZATION STEP-BY-STEP

Day 1                              Day 2
Line Placement                     Receive
Chemotherapy in Clinic




Day 3                              Day 4-17
Labs and Injection Teaching        Give Injections
In Clinic




 Day 10-12                         Day 13-17
Increase Dietary Calcium           Possible Pheresis in
Clinic




                                                          19
                       Injection Administration
                                1. Setting Up:
   -Gather   supplies (pre-filled syringe, band-aid, gauze, alcohol swab)




-Thoroughly wash hands




2. Select a site for Injection:

-Fatty part of either arm or in a fatty part of the belly




-Clean site with alcohol pad and allow site to dry.

3. Getting ready for the injection:

-Remove needle from cover




                                                                            20
                                     -Pinch up fold of skin at site




4. Giving the Injection:

-Insert needle into fold of skin with one quick motion

-Remove hand that is pinching skin and press plunger to push all
medication in slowly and count to five before removing the needle
from skin

5. After the Injection:
-Press gauze over site as you remove needle from site


-Put needle DIRECTLY into sharp box.              DO NOT put cap
back on the needle!!!



-Place band-aid on injection site and RELAX!!!




                                                                  21
         WHAT SHOULD I DO WHEN MY COUNTS ARE LOW?

Chemotherapy, radiation and other treatments cause your bone marrow to temporarily stop
making blood cells. Although receiving donated bone marrow will minimize the time your
counts will be low, there is still time when your marrow does not work. This causes the
following conditions:

ANEMIA

Anemia is a decrease in the red blood cell count. Anemia is easy to treat by giving red blood
cell transfusions. You will need several blood transfusions during your treatment course.
The lab values that tell us your red blood cell count are hematocrit and hemoglobin or AH
and H.

THROMBOCYTOPENIA
Thrombocytopenia is a decrease in the platelet count. Platelets help clot the blood and
prevent bleeding. This is tracked by a laboratory value called platelet count. A low platelet
count is treated by giving platelet transfusions. You will need to have many platelet
transfusions during your recovery.


  Special precautions need to be taken while your platelet count is low.
         Bleeding could be a serious event. Please follow these steps:

         Always wear slippers or non-slip bedroom shoes to prevent foot injury and falls.
         Avoid using razors to shave, avoid use of sharp objects such as needles, scissors,
         etc.
         To prevent a nose bleed, avoid blowing your nose.
         Avoid intimate sexual contact such as intercourse.
         Always wear a seat belt while riding in a car.
         Avoid bending over with your head lower than rest of body.
         Avoid use of suppositories and deep injections (intramuscular).
         Hold all needle sticks for at least five minutes with gauze.




                                                                                          22
                                   NEUTROPENIA

Neutropenia is a term used to describe a decrease in white blood cells (WBC). WBCs are
your body's main way to fight off infection. Special precautions need to be taken while your
WBC count is low. These precautions are steps that will protect you from germs that could
lead to infection.




                 Wash your hands frequently (after using the bathroom, after eating,
    before doing any activity like taking medications, changing dressing etc.) This is
    the best way to prevent infection.

 Encourage those around you to wash hands frequently.

 Practice good personal hygiene including daily bathing and good oral care.

 Avoid persons with contagious illnesses or those who have been exposed to
  contagious illnesses. People with possible illnesses should not visit you.


        Patients and those around you should NOT SMOKE. This could be
    extremely dangerous.

 We suggest only a couple of visitors at a time for short periods.

 No live plants or flowers are permitted on the inpatient 8 West area. This includes
  Spanish Moss and Eucalyptus.

 When out, avoid crowded places such as malls, theaters, and churches.

 You will be given a medicine that helps speed up recovery of your white blood
  cells after your transplant. These growth factors are given subcutaneously just like
  insulin shots. This medication helps your bone marrow cells to grow.

 You will also receive antibiotics that help protect you from infections. Some
  antibiotics are pills and some are I.V. It is important to tell your doctor about any
  allergies or past reactions to medications.

       Your doctors and nurses will review these precautions with you.
                 Please feel free to ask questions anytime.

                                                                                         23
                      NUTRITION THERAPY
                             AND
             THE BONE MARROW TRANSPLANT PATIENT



        Eating well before and after the transplant will help speed recovery and increase
strength. Problems may occur before and after the transplant that affect what you are able
to eat.

Pre-transplant/Conditioning Phase

   Chemotherapy and radiation may make eating harder than usual.
   Common problems that may occur during this time are nausea, vomiting, and diarrhea.
   Foods that help during this time are broth based soups, juices, cold drinks, canned fruits,
    etc. (Please check with the team before trying something new).

Early Post Transplant Phase

   The first two weeks after the transplant, some patients suffer from nausea, vomiting,
    diarrhea, sores in the mouth or throat, and cramping.
   Some patients may become neutropenic. (See Neutropenic Guidelines on next page).
   During this time, keeping record of your food intake will be very important.

Recovery Post-Transplant Phase

   Some patients have loss of taste, and do not feel hungry at this time.
   It is very important to try eating a variety of foods with small meals and snacks
    throughout the day.
   The dietitian can suggest foods that are high in calories and protein for you to try and eat
    to maintain your weight.

Nutrition Support with Parenertal Nutrition (PN):

   Parenteral Nutrition is a different kind of nutritional support used for the patient who is
    unable to eat enough over a period of days.
   PN provides your body calories, protein, fat, vitamins and minerals in a liquid form that
    is fed directly into your veins through your catheter.
   PN will help your body heal and improve your recovery.




                                                                                             24
                  NEUTROPENIC DIETARY GUIDELINES

Keeping your body free of infection is one of the most important parts of early post transplant
care. Patients will often become neutropenic during this time and are at a greater risk for
bacterial infection.

                                 FOOD GUIDELINES

    ALWAYS FOLLOW THESE DIETARY GUIDELINES UNLESS YOUR DOCTOR
                      TELLS YOU OTHERWISE.




          MEAT:
   Deli meats and processed meats (hotdogs)                           EGGS:
   should be heated to steaming before eating             Eggs should be pasteurized and well
                                                          cooked
   Other meats, poultry, and seafood should be
   well cooked before eating                              Do not eat foods containing raw or under




        FRUITS & VEGETABLES:
   Fruit and vegetable juices must be                           MISCELLANEOUS:
   pasteurized                                          Avoid raw grain products (uncooked
   Vegetables must be washed, cooked or                  pasta, bread dough).
   peeled
                                                         Avoid contact with raw bread
   Avoid fruits with a rough texture
                                                          making yeast
   (raspberries, strawberries) that cannot be
                                                          Honey must be pasteurized
   peeled
                                                          Avoid well water
   Fruits with a smooth texture must be
                                                          Peanuts or other nuts must be
   washed, cooked, or peeled
                                                           canned
   Vegetable sprouts should be avoided
                                                          Avoid pepper
   Tofu must be well cooked



        DAIRY PRODUCTS:
   Milk, cheese, and yogurt must be                               RESTAURANT EATING:
   pasteurized                                            Avoid salad bars and buffets
   No aged or moldy cheeses                               Avoid uncooked fruits and
                                                          vegetables




                                                                                            25
                                                                EMOTIONS




Blood and marrow transplant patients face a lot of challenges. Facing a serious illness, being away
from home, and undergoing more treatment can lead to many different feelings which are normal and
common among patients. You and your loved ones have been through a period of great stress and
change. You have been dealing with the shock of having a life threatening illness and the difficulty
of treatment.

FEAR AND UNCERTAINTY

It is normal to be afraid when you have a life threatening illness and you are considering a treatment
with risks. Common fears and concerns are the threat of dying, pain, losing control, leaving family
and home, money problems and the unknown. It helps to face your fears and concerns. Fear is a
feeling that grows when it is hidden or ignored. When these feelings and worries are shared openly
they can be tackled together. If you have difficulty dealing with your worries or if you have trouble
sleeping, talk to one of your transplant team members. Referrals can be made to help you get the
support you need.

SADNESS

Although you try to maintain a positive attitude, you may have times when you cry and feel down.
This is normal. It does not mean that you are losing your positive focus. What you are feeling is
difficult and often painful. It is okay to say you are feeling low, and it helps to talk about your
feelings. Do not be afraid to cry. Crying is a way to release these feelings and many patients say
they feel better after a good cry. If you feel depressed or hopeless most of the time, please let
someone on the team know about these feelings. There are medications that may help.




ANGER


                                                                                           26
When something happens that we do not like, we often feel angry. You may feel angry at the
unfairness of the disease, at the side effects of treatment, at God, or at yourself. Sometimes this
anger spills over toward your family or the medical team. It is okay to feel angry. It is important to
find ways to release this anger without harming yourself or others. When you feel angry, take time
out and consider a healthy way to deal with these feelings. Talking with someone, writing out your
feelings, taking part in some physical activity or practicing relaxation and meditation can help you
deal with anger.

GUILT

Many patients feel guilty that they are sick and worry that they are a burden on their family and
friends. You cannot help the fact that you have this illness. It is true that this illness and treatment
will affect your loved ones. They will support you just as you would support them. You may feel
better if you share these feelings with your loved ones. Be grateful for the people who care for you.
Thank them for their help.


FATIGUE

Since your diagnosis and treatment, you may feel weaker and more tired than usual. Feeling tired
can also make you more irritable and emotional. This may be due to the illness, the treatment, the
physical and emotional stress of coping with the illness or all of the above. You will feel fatigued
during the transplant process as well. For many patients, the limitations of their illness are very
frustrating. You want to be able to do all the things you used to do. Please be easy with yourself.
Plan short, realistic activities. Allow for plenty of naps.




                                                                                             27
                                                     COPING WITH EMOTIONS



Coping with a serious illness and treatment is like an emotional roller coaster. While you are
undergoing a bone marrow transplant, your emotions will continue to go up and down.
Everyone has their own strengths and ways to help manage these feelings. Below are some
ways other patients have coped with the emotions and stress associated with transplantation.


   Talking with other people is the best ways to express your emotions and to cope with a
    stressful experience. Besides talking with family and friends, feel free to share your
    concerns with the transplant team. There are several staff members available to you such
    as social workers, psychiatric liaison nurses, and chaplains professionally trained to
    provide counseling to you and your family

   Many patients say that their spiritual beliefs give them strength and comfort. You may
    find that prayer or meditation is a helpful way to cope. Our hospital chaplains are here to
    meet with persons of any faith.

   The support of family, friends and other caring people helps many patients through the
    transplant process. Seeing visitors, taking telephone calls, and mail give encouragement.

   If your feelings of anxiety or depression seem too much to handle, tell your doctor or
    social worker. You may need medication to help with these symptoms.

   Try to focus on one day at a time.

   Ask to meet a former BMT patient who can share helpful information with you from
    their own experience with BMT.

   Learn some relaxation exercises.

   Read inspirational literature. Writing in a journal is a good way to organize your thoughts
    and emotions.

   Plan some options for entertainment and activity such as TV, videos, reading, books on
    tape, music, cards, games, puzzles, or needlework.

 Bring some comforting items from home such as your own pillow or blanket. Decorate
    your hospital room with photographs, posters, cards, or children's drawings.



                                                                                            28
                                                         TRANSPLANT TEAM
                                                            MEMBERS -
                                                        WHO WILL BE TAKING
                                                           CARE OF ME?

At MUSC we use a team to deliver quality care for our transplant patients. The team is made up of
many professionals. During your treatment you will meet with many different members of the team.



       Physicians
Transplant-trained physicians plan your medical care. They understand you and your special needs.
In addition to the transplant doctors, other doctors who are trained in different areas of medicine will
help with your care. MUSC is a teaching facility. If you are admitted, your team of doctors may
include interns, residents and fellows. All of your blood and marrow transplant care is directed by an
expert Hematologist/Oncologist who is also referred to as the Attending Physician.

Nursing staff
The transplant nurses are trained in the care of transplant patients and their families. The nurses
administering chemotherapy are all nationally chemotherapy certified. The nurses teach patients and
family about their care. We want your family to become involved in your day to day activities.

Blood and Marrow Transplant (BMT) Coordinators
The BMT team has nurse coordinators who are involved in your transplant from the beginning.
Their job is to see that you and your family have all the necessary support and resources you need to
undergo BMT. They are the link between you and the rest of the transplant team.

Advance Practice Nurses
Your health care is also overseen by clinical nurse specialists and nurse practitioners who have
experience and expert knowledge of the transplant process. These nurses work with the team to give
you the best care.

Physician Assistant
Works closely with the physician on the team, and will be helping with assessments and procedures.



                                                                                             29
Dietitian
Your appetite is very important to us! Your weight is recorded daily as well as what you eat. You
may need intravenous nutrition during your transplant. Our expert dietitians oversee your dietary
needs.

Pharmacist
The pharmacology team works very closely with the staff in looking at each patient’s response to
drug therapy. There is always an experienced pharmacist available for you and your family.

Chaplin Service
On call chaplains are available to give support to you and your family.

Psychiatric Liaison Nurses
Trained nurses are here for you and your family to provide emotional support and to teach you
and your family relaxation skills.

Social Workers
Both inpatient and outpatient social workers can help you and your family to get ready for your
BMT. They can give you information about support groups and community resources. The social
workers are trained to provide counseling for you and your family.

Financial Coordinators
Financial coordinators are dedicated to helping transplant patients with the financial issues of
getting ready for a BMT. It is necessary to talk about finances with the financial coordinator.
They are your best source in helping to sort through the red tape.




                                                                                         30
                    TRANSPLANT FINANCIAL SERVICES

   Proof of financial resources is a prerequisite to acceptance for organ transplantation at
MUSC. As mentioned earlier, your insurance company must pre-approve your blood and
marrow transplant. You will meet with a transplant financial coordinator who will go over
with you, in detail, your benefits per your policy for transplant and transplant related services.

Patients are required to sign a Transplant Financial Responsibility Form, which gives an
estimated cost of a patient’s responsibility as it relates to pre and post transplant services.
MUSC Medical Center does not guarantee charges will not exceed your insurance benefit for
transplantation. The financial coordinator will work with you and your insurance company
to make sure that you are allowed the maximum benefits for transplant as stated in your
policy.


It is important to keep all of your present insurance. This includes South Carolina
Medicaid, any group insurance, or COBRA insurance. If you are no longer able to work,
most companies will allow you to keep your insurance for 18 months after you stop
working. This is called COBRA. You must request COBRA insurance benefits within
60 days of your last working day and will need to make monthly payments in order to
keep the insurance.

If you do not have any insurance or funding, the financial counselor will meet with you to
discuss and determine if you would qualify for any federal/state programs, which may assist
you with obtaining coverage for the transplant.

It is your obligation to inform the Transplant Financial Coordinator of any changes that take
place with your insurance. This obligation is ongoing until your transplant takes place or
until you are no longer eligible for transplantation at MUSC.

Organ transplantation involves a long term commitment to patient care and intense utilization
of resources. Please feel free to contact the Transplant Financial Coordinator with any
questions or concerns regarding insurance coverage for your transplant.



                                                                                              31
                                                         LODGING OPTIONS




    You will need to find local lodging during certain phases of your transplant:

Pre-Transplant:

   a. During the work up phase you may be scheduled for tests early in the morning for 1
      or 2 days and may want to stay overnight instead of driving back and forth from
      home.
   b. During pheresis (collection of stem cells), you will need to be at the Hemapheresis
      unit each morning at 8AM for 1-5 days.

Many of the local hotels in Charleston offer a lower rate for patients. An MUSC Guest
Relations representative can secure a room at the hospital discount rate at various hotels in
the downtown area. Call MUSC Guest Relations at 843-792-3122, M-F 8:30am-11pm and
Sat-Sun, 8:30am-4:30pm. Hotel costs may not be covered by insurance during this pre-
transplant phase.

During Transplant:

During the actual transplant treatment, the hotel room should be covered under the patient’s
medical benefits. This arrangement is worked out with your insurance carrier before
transplant. If a patient needs to be re-admitted to the inpatient unit, the hotel room will be
available as long as the facilities are not needed by another patient undergoing
transplantation. Please understand that these blocked rooms are provided for patient’s first
and your caregiver may be asked to check out or move into a different room.

Post transplant:

BMT patients who live outside the local Charleston area may need to rent an apartment or
hotel room after their blood counts have recovered until it is medically safe for them to go
home. Your choices would be to stay with family or friends in the area; to stay at a local
apartment that you find yourself; or stay in a hotel or motel.




                                                                                           32
                                                          LODGING OPTIONS
                                                            CONTINUED



TEMPORARY HOUSING

The following is a list of companies that assist with locating temporary housing in the Charleston
area. They provide furnished apartments that also include most houseware items. The fee
includes all utilities (electric, water, etc) and a minimum 30 day stay is required.



ACRS (Apartment & Corporate Relocation Services)
www.locatehousing.com
1-800-375-3791


Select Corporate Housing
www.selecthousing.com
1-800-896-7290


Temporary Housing Unlimited
www.temp-housing.com
1-800-528-0139




                                                       SUGGESTED ITEMS TO
                                                       BRING TO THE HOTEL
                                                         AND/OR HOSPITAL




                                                                                        33
CLOTHING: Plan to bring enough clothes for 2 weeks. Bring comfortable clothes and
shoes. It is best to wear shirts with buttons, so that your catheter may be easily reached.
Laundry facilities are available at the hotel. You may want to have hats, scarves, wigs or
turbans. Do not bring anything expensive or not washable.


PERSONAL CARE ITEMS: Bring the items you normally use such as shampoo, soap, new
toothbrush, toothpaste, electric razor only, lotion, and cosmetics. The patient should not
share personal care items with others. You may not be able to use powders/perfume or
cosmetics during certain phases of your treatment.


FOOD AND DRINKS: 3 meals a day will be provided for the patient when in the hospital.


ENTERTAINMENT AND INSPIRATIONAL ITEMS: Each room has a television, clock,
and telephone. You may wish to bring books, magazines, puzzles, games, tape player, music
tapes, and books on tape, knitting, needlework, relaxation tapes. You may bring favorite
photos, children's drawings, cards, and posters. However, you may be moving in and out, so
please keep personal belongings light.


      Please do not bring items of great value as we cannot be
              responsible for lost or stolen belongings.

  No fresh fruits or flowers are allowed in the transplant rooms.

             No pets are allowed in the transplant rooms.




                                                                                        34
                                                        HOMESTEAD STUDIO SUITES




                                     General Information

Please check in to the Homestead Studio Suites during their normal business hours of noon to
6:00pm. They will issue your key, have you sign a responsibility clause, give you an overview of
the complex and explain information about the suites.

Homestead Studio Suites Office Phone Number: (843) 740.3440

To receive mail while at the suites:
                              Homestead Studio Suites
                              c/o (patient name and room #)
                              5045 North Arco Lane
                              North Charleston, SC 29418

The Homestead Studio Suites will assign your phone number when you check in. Wakeup calls
can be provided if necessary.

Homestead Studio Suites transplant rooms come furnished with a television, (cable included),
clock radio, pots and pans, utensils, dishes, glassware, microwave, coffee maker, can opener and
all major appliances.

All bed and bath linens are provided.

Outdoor grille available for use on “First come first serve” basis.

Weekly cleaning is provided with daily “light touch” service (when needed) Monday through
Friday.

Laundry facilities are located on the 1st floor. These are coin operated, $1 per wash load and $1
per dry load.

Should any problems arise with the room please call the complex main office.




                                                                                                35
                                           LOCAL HOTEL
                                          ACCOMODATIONS




DOWNTOWN CHARLESTON
 Comfort Inn                        (843) 577-2224
 144 Bee Street
 Courtyard Marriott                 (843) 722-7229
 35 Lockwood Boulevard
 Holiday Inn, Riverview             (843) 556-7100
 301 Savannah Highway
 Howard Johnson                     (843) 722-4000
 US Highway 17 South
 Sheraton Inn                       (843) 723-3000
 170 Lockwood Drive
 Ashley Inn Bed & Breakfast         (843) 723-1848
 201 Ashley Avenue (Located next to
 MUSC)
 Bed-No Breakfast                   (843) 723-4450
 15 Halsey Street
 Cannonborough Inn                  (843) 723-8572
 184 Ashley Avenue (Located next to
 MUSC)
 Rutledge Victorian Inn             (843) 722-7551

WEST ASHLEY
Econo Lodge                         (843) 571-1880
2237 Savannah Highway
Holiday Inn Express                 (843) 402-8300
1943 Savannah Highway
Lands Inn                           (843) 763-8885
2545 Savannah Highway
Motel 6                             (843) 556-5144
2058 Savannah Highway
Town and Country Inn                (843) 571-1000
2008 Savannah Highway




                                                          36
                                         LOCAL HOTEL
                                        ACCOMODATIONS



   NORTH CHARLESTON
Super 8 Motel                     (843) 747-7500
4620 Dorchester Road
Stay Over Lodge                   (843) 554-1600
2070 McMillian Avenue
Days Inn                          (843) 747-4101
2998 West Montague
Orchard Inn                       (843) 747-3672
4725 Arco Lane
Extended Stay America             (843) 747-3787
5059 North Arco Lane
Fairfield Inn                     (843) 572-6677
7415 Northside Drive
Howard Johnson                    (843) 554-4140
Interstate 26, Exit 215
LaQuinta Motor Inn                (843) 797-8181
2499 LaQuinta Lane
Interstate 26, Ashley Phosphate
Northwoods Atrium Inn             (843) 572-2200
2400 Ashley Phosphate
Residence Inn                     (843) 572-5757
7645 Northwoods Boulevard

MOUNT PLEASANT
Comfort Inn                       (843) 884-5853
310 Highway 17 North Bypass
Days Inn Patriots Point           (843) 881-1800
261 Johnnie Dodds Boulevard
Hampton Inn                       (843) 881-3300
255 Johnnie Dodds Boulevard
Holiday Inn                       (843) 884-6000
250 Johnnie Dodds Boulevard
Master Economy Inn                (843) 884-2814
300 Wingo Lane




                                                        37
            Directions to Homestead Studio Suites from MUSC:
Take a right onto the Cross-town/Highway 17 North. Then follow Highway 17 North (stay in the left

lane) to the I-26 West merger. Take I-26 West (towards North Charleston/Columbia) and exit 213

(Montague Ave.). Stay in the right lane. When you come to the top of the ramp take a left at the

stoplight onto West Montague Avenue. You will cross back over I-26. After McDonalds, take a

right on the International Blvd. At the next light, you will go right onto Tanger Outlet Blvd. and

immediately go right onto Hotel Road. You will then be in the back lot of Homestead Studio Suites.

Drive around to the front to park.

            Directions to MUSC From Homestead Studio Suites:
Go to back of parking lot and turn left onto Hotel Road. Take a left onto Tanger Outlet Blvd, and

left at International Blvd. Take a left onto Montague Avenue. Take a right onto I-26 (before the

overpass). Take I-26 East until you have to go onto either South 17 or North 17. Take Highway 17

South (towards Savannah, exit 221A). This will bring you into downtown Charleston. Take the

Rutledge Avenue exit. This will cross back over highway 17. You will go through 2 more stoplights

and then you will see the Ashley- Rutledge Tower parking garage on your right before the next

stoplight. Turn right here to enter the parking garage.




                                                                                               38
MAP




      39
                                                 GLOSSARY
ALLOGENEIC (Allo)
  A transplant in which the patient receives donor stem cells or donor marrow.

ALOPECIA
  Hair loss.

ANEMIA
  Low hemoglobin in the blood, usually due to low numbers of red blood cells.

ANESTHESIA
  A procedure in which medicines are given to make the patient unable to feel the pain of a
  surgical procedure.

ANOREXIA
  Severe loss of appetite.

ANTIBIOTIC
  Medicine given to fight infection.

ANTIEMETIC
  A medicine that prevents or decreases nausea and vomiting.

AUTOLOGOUS (Auto)
  A transplant in which the patients own bone marrow or stem cells are used.

BIOPSY
   Taking out a piece of tissue and examining it with a microscope to diagnose disease.

BLOOD COUNT
  The number of red cells, white cells, or platelets in a sample of blood.

BONE MARROW
  The soft tissue in the center of the bones where blood cells are made.

CENTRAL VENOUS CATHETER
  A small, flexible plastic tube inserted into the large vein above the heart, through which
  drugs and blood products can be given, and blood samples can be withdrawn (also called
  central line or Hickman/pheresis catheter).



                                                                                      40
CHEMOTHERAPY
  Treatment with anticancer medicines.

COMBINATION CHEMOTHERAPY
The use of two or more anticancer medicines.

EDEMA
  Extra fluid in the tissues that may cause swelling.

EMESIS
  Vomiting.

ENGRAFTMENT
  When bone marrow infused during a BMT or is accepted by the patient, and begins
  producing blood cells.

GASTROINTESTINAL (GI)
  Having to do with the digestive tract (mouth, throat, esophagus,       stomach, small and large
  intestine, and rectum).

HEMATOCRIT (HCT OR ACRIT)
  A blood test which tells how many red blood cells you have.

HEMATOLOGIST
  A doctor who treats diseases of the blood.

HEMOCCULT
  A test for hidden blood in a specimen, usually stool.

IMMUNE SYSTEM
  The body=s defense system against infection.

INTAKE AND OUTPUT (I&O)
   Keeping track of your fluids you take in and the urine you put out.

MAGNESIUM (Mg)
  An important mineral in your body.




                                                                                        41
NEUTROPENIA
  A drop in the number of white blood cells in the blood which places a person at risk for
  infection.

ONCOLOGIST
  A doctor who treats cancer.

PCA PUMP (Patient Controlled Analgesia)
  An IV pump that gives you pain medicine when you decide that you need it.

PFTs (Pulmonary Function Tests)
Tests that tell how well your lungs are working.

PLATELET (plt)
  A type of blood cell that helps blood to clot, and prevents bleeding.

PHERESIS
  The procedure for harvesting stem cells from the blood.

POTASSIUM (K)
  An important salt in your body.

PREPARATIVE REGIMEN
  The chemotherapy and/or radiation given to BMT patients prior to transplant to kill diseased
  cells and /or make space for healthy new marrow.

PULMONARY
  Having to do with the lungs.

PROTOCOL
  The plan of treatment.

RADIATION THERAPY (XRT)
  A cancer treatment using high energy radiation from x-ray machines, cobalt, radium, or other
  sources.

RED BLOOD CELLS (RBCs)
  Small blood cells that make blood look red and carry oxygen to all parts of the body.




                                                                                      42
RELAPSE
  Recurrence of the disease following treatment.

REMISSION, COMPLETE (CR)
  Condition in which no cancerous cells can be detected and the patient appears to be disease-
  free.

REMISSION , PARTIAL (PR)
  Condition in which there has been at least a 50% regression of the disease following
  treatment.

SIDE EFFECTS (SEs)
   Reactions to medicines that are usually temporary.
STEROID
   A drug used to treat and prevent graft-versus-host disease.

STOMATITIS
   Sores in the mouth.

TOTAL PARENTAL NUTRITION (TPN)
  Intravenous feeding that provides patients with all essential nutrients (also called TPN,
  hyperalimentation or hyperal).

THROMBOCYTE
  Platelet.

THROMBOCYTOPENIA
  Drop in the number of platelets in the blood, which puts the patient at risk for bleeding.

VENO-OCCLUSIVE DISEASE (VOD)
  A disease that sometimes occurs following high-dose chemotherapy and/or radiation,
  in which the blood vessels that carry blood through the liver become swollen and clogged.

WHITE BLOOD CELLS (WBC)
  Blood cells that fight infection or disease.




                                                                                        43
        AUTOLOGOUS BLOOD AND MARROW TRANSPLANT
                  POST HOSPITAL CARE


        You will be ready for discharge when your blood counts are stable, you are able to
eat, and you have no signs of infection or other problems.


You will be closely followed in the clinic for 1-2 weeks after your transplant discharge or
longer if complications occur. You will need red cell and platelet transfusions. Blood tests
are done frequently to help us evaluate you and monitor the side effects of your medications.
You may also receive antibodies (Immune Globulins) to help protect against infections.
Many patients receive antibiotics intravenously either in the clinic or at home.


Having a blood and marrow transplant is tiring. You will need a family member or a close
friend to stay with you after you leave the hospital. They can prepare meals, transport you to
the clinic, shop and run errands.

HOW CAN I AVOID INFECTIONS?

All blood and marrow transplant patient’s ability to fight off infection is decreased.
Infections can be caused by the normal bacteria that are found on your skin and inside your
body. Good hygiene is very important. Daily showers, good mouth care, frequent hand
washing, and careful catheter care will help prevent infections.


Transplant patients should avoid crowds for several months after their transplant. You may
need to carry a surgical mask if you have to be in a crowd. If a family member is ill, please
avoid them as much as possible. Friends and family should not visit you if they have colds,
sore throats, or are ill. If you are exposed to chicken pox, call us immediately.


Do not go out in crowds (shopping centers, sporting events, or church), until a BMT team
member tells you it is okay. Your bone marrow and immune system (your body's protection)
will not tolerate a minor infection as well as it did before your transplant. A fever or
infection could lower your blood counts. If you have a fever above 100.5 you need to call a
transplant team member right away. Early treatment may prevent even more serious

                                                                                                 44
complications.        Do not smoke! Your lungs may have been harmed by chemotherapy
and/or radiation. Smoking will make the damage worse.


WHAT ACTIVITIES CAN I DO?

We encourage you to lightly exercise after your discharge. Walking is ideal. More vigorous
exercise should be postponed until your platelets are near normal and your catheter is
removed. It may take several months until you feel like your "old self" again. Try to remain
active by helping to prepare meals and helping with household chores. Most patients do not
return to work until a few months and up to one year post transplant. You should discuss
your work concerns with your physician. You may be eligible for disability benefits.


The key word regarding activity is moderation. You will tire easily. Increase your activities
slowly, and remember to rest between activities.



         WHAT ABOUT MY PETS?

Household pets are not usually a problem. Do not clean up after your pets. Have a family
member clean the litter boxes, aquariums, and bird cages. Please let your doctor know if you
have pet birds. Stay away from pet feces (bowel movements), especially cat litter boxes.
This will help prevent an illness called toxoplasmosis.

SKIN CARE

Continue to shower or bathe daily. Use soap with a moisturizer, because your skin may be
unusually dry. Your hair may be shampooed daily, but use a crème rise or conditioner since
your hair may be dry or brittle. Apply skin cream to dry skin after bathing. Your skin color
may be different after the transplant. This usually improves with time.


 MEDICATIONS

Do not take aspirin or medicine that contains aspirin. Do not take medicine that contains



                                                                                          45
ibuprofen (such as Advil). Do not take over-the-counter medicine or old prescription
medicines without talking to a Transplant Team Member.


If you are considering taking anything new like vitamins or supplements, speak with a
transplant member first to avoid any drug reactions. For minor pain, you may take Tylenol
(acetaminophen).

BLEEDING CONCERNS

After a transplant your platelets are lower in numbers. Platelets prevent bleeding after injury.
Please call the transplant team if you have new rashes, bruises, bleeding gums, nosebleeds,
blood in your urine, or any other bleeding signs. Use a soft toothbrush and brush teeth
gently.

SEXUALITY

Men and women may produce fewer hormones after a transplant. Hormone replacement can be
helpful. Women may need to use a lubricating jelly like KY. Men may have sperm tests to
determine fertility. Feel free to talk to the transplant team about any questions you may have. You
should continue to use birth control if your doctor is uncertain about infertility. You may have your
blood tested for HIV or Hepatitis five (5) months after your last transfusion.


DIET

It is important to drink 8-10 glasses of liquids every day. This helps to protect your kidneys. You
may find that smaller, more frequent meals are easier when you first get out of the hospital. Talk to a
dietitian if you have any additional questions.

CATHETER CARE

Continue flushing your Central Venous Catheter and changing the dressing as directed. It is very
important that you place used needles in the needle box. A sealed milk jug can also be used. Bring
the full needle boxes to the clinic for disposal.
          DISCHARGE INSTRUCTIONS FOR PATIENTS WHO HAVE


                                                                                            46
            UNDERGONE AUTOLOGOUS BLOOD AND MARROW
                       TRANSPLANTATION




                                  CHECK TEMPERATURE

Check and write down your temperature 2 times a day. Call the Blood and Marrow Transplant
Team if your temperature is 100.5oF degrees or more. Continue to check your temperature twice a
day until your line is removed.

   Please call a team member if you have any of the following:
      Fever of 100.5oF degrees or more.
      Nausea (feeling sick to your stomach).
      Vomiting (throwing up).
      If you are unable to take your medicine or keep it down.
      Urine or bladder problems (blood in your urine or pain when going to the bathroom).
      Diarrhea (more than 3 watery bowel movements per day).
      Pain.
      Cough, dripping nose, or signs of a cold.
      Catheter problems such as redness, soreness, drainage or a bad odor.
      Any bleeding.
      Questions about your medication.
      A rash, peeling of skin, or change in your skin.




If you need to call during the evening or weekend hours, call the on-call
Hematology/Oncology fellow or the on-call BMT member by calling the
MUSC operator at (843) 792-2123.




                                                                                    47
                                                    CAREGIVER INFORMATION




During the transplant process, the caregiver plays a very important role. Listed below are the
things that you will need to do. We will review this with you before you go to the
hotel/apartment. Please feel free to ask questions anytime.


PLEASE NOTE: We require that each caregiver is with you for a minimum of a week at
a time for safety issues and continuity of care during your transplant. Caregiver
changes should occur during the weekdays when we will be able to review teaching
with each new caregiver. We may request that you show our team a schedule of your
caregivers during transplant. It is also strongly recommended that you have a “back
up” for emergencies.


DAILY

       Help the patient get to and from clinic appointments. You are expected in the clinic
       at 7:30A.M. each morning, seven days a week.

       Bring the caregiver book and medications to the clinic every morning.

       Help with meals.

       Assist with central line dressing changes.

       Monitor incoming phone calls and function as spokesperson for the patient.


VITAL SIGNS

This includes taking blood pressure, pulse and temperature. All readings need to be recorded
on the Vital Sign sheet in the caregiver book.


                                                                                           48
   MEDICATIONS

   Give the patient all pills (medication) that must be taken. You may have to set the alarm
   clock to give medications at night. All medications should be charted on the Medication
   sheet that you will be given. If any medications are taken out of the PRN (as needed) bag,
   tell the pharmacist at next clinic visit so that the pill can be replaced. Also, your caregiver
   may be asked to help with IV medications when you are at the hotel. A home infusion
   company will assist with this.


COMMUNICATION WITH THE TRANSPLANT TEAM

The caregiver lets us know of any problems that develop during the night, and lets us know of any
concerns. We expect you to ask questions. The team members will check with you every morning to
get a report on how the patient did during the night. The team members will also be checking your
book every morning. This is to make sure everything was done during the night and was recorded
properly. This is the perfect time to ask questions if you were unsure of how to do something or if
you did not understand the instructions.




A BMT COORDINATOR OR ADVANCE PRACTICE NURSE IS ON CALL
     24 HOURS A DAY. CALL 843-792-2123 AND ASK FOR THE BMT
    COORDINATOR ON CALL. YOU SHOULD ALWAYS CALL WITH
     QUESTIONS, OR CONCERNS (FEVER, UNCONTROLLED PAIN,
                              NAUSEA, VOMITING, ETC.).




                                                                                               49
   WE NEED TO KNOW IF YOU HAVE PROBLEMS
             DURING THE NIGHT




                When outside of the hospital call:
                            843-792-2123
 Please tell them that you are an “outpatient” bone marrow transplant
  patient and you need to have the BMT coordinator on call paged.

IF YOUR PHONE CALL IS NOT RETURNED WITHIN 10 MINUTES
                  REPEAT THE PAGE

             Call the coordinator if you experience
                     ANY of the following:
 If temperature above 100.5 by mouth         Inability to take your medications
 or any time you have CHILLS                 Increase in pain or new pain
 Dizziness                                   Change in breathing
 Confusion                                   Chest pain or pressure
 Severe headache                             Bleeding (from nose, I.V., urine,
 Blurred or double vision                    stool, vagina, vomit, etc.)
 Numbness of hands or feet                   New rash or hives
 Severe nausea (sick stomach) or             Heartbeat fluttering, skipping a beat
 throwing up                                 Any sign of infection

                Please let a BMT team member know:
    If pulse (heartbeat) is greater than 120 or less than 50
    If top number of blood pressure greater than 180 or less than 90
    If bottom number of blood pressure greater than 90 or less than 40




                                                                                 50
                                                             CAREGIVER
                                                           RESPONSIBLITIES




Listed below are the things that we will teach you how to do. Please feel free to ask
questions at any time. If necessary, caregivers may change, however we require
advance notice.

Changing caregivers can be done during weekdays (Monday-Friday) only and the new
                  caregiver must be available before the old one leaves.

Assist patient with daily activities:
       Assist the patient to and from the clinic.
       Bring caregiver book, medications, and vital sign equipment to clinic every morning.
       Perform central line dressing changes as directed by staff.
       Monitor incoming phone calls and function as spokesperson for the patient.
Monitor vital signs:
     Includes taking blood pressure, pulse and temperature as needed. All readings are
     recorded on the vital sign sheet in the caregiver book.
Administer medications:
     Give patient all pill medications that are due. This may involve setting the alarm
     clock to give medications at night. All medications should be charted on the
     individualized medications sheet that you will be given. If medications are taken out
     of PRN (as needed) bag, notify treatment room nurse at next clinic visit so that the pill
     can be replaced.
Intake and output:
      The caregiver may be instructed how to measure and record everything the patient
      drinks and eats. You may also be instructed on how to measure and test all output
      including urine, stool and vomit. The caregiver may wear gloves when handling
      output.

Communicate with Blood and Marrow Transplant (BMT) Team:
    The caregiver will be responsible for letting us know if any problems develop during
    the night. The caregiver will also be responsible for letting us know of any concerns
    and for asking questions as they come up



                                                                                           51
The team members will check with you every morning to get a report on how
the patient did during the night. The team members will also be checking your
book every morning to make sure that everything was done during the night and
was written down correctly. This is the perfect time to ask questions if you were
unsure of how to do something in particular or if you did not understand the
instructions.




A BMT COORDINATOR OR ADVANCE PRACTICE NURSE IS ON CALL 24
HOURS A DAY.        YOU SHOULD ALWAYS CALL WITH QUESTIONS, OR
CONCERNS, (FEVER, UNCONTROLLED PAIN, NAUSEA, VOMITING, ETC)
DIAL 843-792-2123 AND ASK FOR THE BMT COORDINATOR ON CALL.




If your patient is admitted to the hospital please contact the housing coordinator
within 24 hours of the re-admit. If the housing coordinator has extra hotel
rooms, you may be able to keep your room. You may be required to move into
a different room and make payment directly to the hotel. Please understand that
these blocked rooms are provided for patients first, and you may be asked to
check out if the patient in the room is re-admitted to the hospital.




                                                                                     52
                    HELP PREVENT INFECTION!




                    If you have any of the following symptoms:

                                     FEVER!
                                       RASH!
                                     CHILLS!
                                     COUGH!
                                 BODY ACHES!

Please notify the staff prior to your arrival. Do not go to the lab! For cough, fever,
chills or body aches please put on a mask, if you have one, when you enter the
building. If you do not have a mask, one will be given to you at the registration desk.
If you have a rash, do not touch other patients or staff. You will be asked to sit in a
screening area until a team member can assist you.



  Please notify the team by paging the on-call BMT coordinator from 6am to
 8am through the paging operator at 843-792-2123. After 8am please contact
               us through the appointment desk at 843-792-9300.



                                                                                    53
INFUSION




           54
        MUSC HOSPITAL                                                                       POLICIES
                                              MEDICAL CENTER SECURITY                      All visitors must obtain and display a
         INFORMATION
                                             Public Safety officers are available to        visitor pass 24 hours/day. Visiting hours
                                             assist with any concerns after the Guest       are generally 9am-9pm. Please check
PHONE ACCESS                                Relations have left for the day. They will     with nursing for more information.
                                             escort guests to their cars. To access an      Patients may be visited any time with
Local calls                                 officer call 2-4196.                           nursing approval, with the following
Dial 9 and the local telephone number
                                                                                          exceptions:
On Campus Numbers                            CHAPEL - CHAPLAINS
                                                                                            Children over the age of 12 may visit with
Medical Center (Dial 2 + extension)          Chapel is located in room 462D Main
                                                                                            adult supervision. Children under the
Charleston Memorial (Dial 3 + extension)     Hospital. Chaplains are available 24
                                                                                            age of 12 may visit in special situations.
Rutledge Towers (Dial 6 + extension)         hours a day/seven days a week (contact
                                                                                            Please consult the GRR staff if these
                                             the Guest Relations representative or call
                                                                                            arrangements are needed. Children
Long Distance Access                        the hospital operator 2-2123).
                                                                                            visitors are not allowed to spend the
Bell South (Dial 9 + then 0)
                                                                                            night in the hospital.
AT&T (Dial 9-102880)                          SMOKING
MCI (Dial 9-102220 or 9-108520)              Smoking is not permitted inside any area
                                                                                            LOST AND FOUND
Sprint (Dial 9-103330)                       of the Medical Center and only
                                                                                            All items are secured in the Public Safety
                                             in designated areas outside.
                                                                                            Office. They can be reached at 792-
You will either be prompted to enter your
                                                                                            4196.
calling card number, or they will ask that    ATM MACHINE Z
you stay on the line for operator            An automated teller machine is located
assistance.                                  on the first floor of the Main Hospital near
                                             the entrance to the Cafeteria.
Calling Adult Hospital
From outside the Medical Center               PARKING FEES
953-9 + the room number for floors 2-9       Please park only in legally designated
953-90 + the last two digits of the room     areas (please see map)
number for floor 10                          Patient’s families may
                                             request a reduced rate when
Calling Children=s Hospital                 their visits exceed two hours. Write the
From outside the Medical Center              patient’s full name and room number on
953-0 + the room number                      the front of the parking ticket. Request a
                                             receipt if you plan to depart and return
Medical Center Inside Operator              within a 24-hour period.
2-1010
                                                                     VISITING
                                                                                                                                         55
              MUSC HOSPITAL                       Rutledge Tower Café
               INFORMATION                        Located on 1st floor, Rutledge Tower                   1st floor, Rutledge Tower
                                                  7:30am-3pm M-F                                         8:30am-5:30pm, M-F
We ask that you only bring vending type snacks                                                          Pharmacy and refill line is 876-0199
and drinks in the waiting room. Boxed meals and    PATIENT MAIL
carry out food must be consumed in the            To mail a card or letter to a patient please use        GUEST RELATIONS
cafeteria or outside the building.                the following address:                                 The Guest Relations Representatives (GRR) are
                                                       Patient Name/Room number                          available from 6:30am to 9:00pm to help meet the
Cafeteria                                              MUSC Medical Center                               service needs of patients and visitors. Guest
Located on the first floor of the Main Hospital        171 Ashley Avenue                                 Relations Representatives can provide you with
Breakfast, lunch & dinner available.                   PO Box 250316                                     information about the Medical Center and the
Hours: 6:16am-7pm Sunday-Friday                        Charleston, SC 29425                              greater Charleston community.            They are
Dining Area Open 24 hours a day                   Mail received after you leave the hospital will be     responsible for ensuring a safe and comfortable
                                                  forwarded to your home address.                        environment for guests of the Medical Center. You
Subway                                                                                                   are encouraged to direct problems or concerns to a
Located on the first floor of the Main Hospital    GIFT SHOP                                            Guest Relations Representative. Main number
   9:30am - 1:00am (M-F)                          The Carousel Shoppe is located on the first floor      (843) 792-3122. If you are not completely satisfied
   10:00am - 11:30pm (Sat & Sun)                  of the MUSC Children=s Hospital.                       with the resolution of your concern, the Customer
                                                       8:00am - 8:30pm (M-F)                             Satisfaction Office is available to assist 843-792-
Vending Area                                           9:00am - 5pm (Sat & Sun)                          5555.
Located on the first floor of the Main Hospital   Closed on federal and state holidays.
24 hours a day 7 days a week                                                                             IMPORTANT PHONE NUMBERS AT A GLANCE:
Change machines, microwave ovens                  PHARMACY
                                                                                                         Medical Center
A La Carte                                        3RDFloor, Hollings Cancer Center                       Financial Counselor…………… 792-9241
Located on the first floor of the Main Hospital   9am-5pm, M-F                                           Guest Relations…………………792-3122
Salads, Sandwiches, Pizza, Pasta, Frozen Yogurt   Outpatient refill line is 792-3171, pharmacy line is   Lost and Found…………………792-4196
10:00am - 10:00pm (M-F)                           792-6440                                               Pastoral Services……………….792-9464
                                                                                                         Public Safety…………………….792-4196
Starbucks                                         1st floor, Main Hospital, room 149-H
Located on the first floor of the Main Hospital   8:30am-6:30pm, M-F                                     MUSC HEALTH CONNECTION:
6:30am - 2:00pm (M-F) Next to D elevators         Pharmacy and refill line is 792-4646                   1-800-424-MUSC
                                                                                                         Health Connection is a toll-free telephone line to


                                                                                                                                                        56
find a physician, or schedule an appointment.




                                                57
       REFERENCE LIST FOR EXAM AND APPOINTMENT LOCATIONS
     TEST/PROCEDURE                      LOCATION                       PURPOSE
CT SCAN: ABDOMEN, CHEST,    RADIOLOGY                         LIKE A X-RAY.    MAY PROVIDE
PELVIS AND HEAD             1ST FLOOR RUTLEDGE TOWERS OR      INFORMATION ABOUT YOUR DISEASE
                            3RD FLOOR CLINICAL SCIENCE        STATUS. YOU MAY NEED TO DRINK
                            BULILDING, ELEVATOR “B”           CONTRAST DYE BEFORE TEST.

MUGA SCAN                   RADIOLOGY/NUCLEAR MEDICINE        EVALUATE THE HEART FUNCTION
                            3RD FLOOR MAIN HOSPITAL,
                            ELEVATOR “D”


BONE SCAN                   RADIOLOGY/NUCLEAR MEDICINE        LIKE A X-RAY. MAY PROVIDE
                            3RD FLOOR MAIN HOSPITAL,          INFORMATION ABOUT YOUR DISEASE
                            ELEVATOR “D”                      STATUS. REQUIRES INJECTION OF
                                                              DYE APPROXIMATELY 2 HOURS
                                                              BEFORE TEST.

PULMONARY FUNCTION TESTS    PULMONARY FUNCTION LAB            EVALUATE LUNG FUNCTION
(PFTS)                      5TH FLOOR RUTLEDGE TOWERS


BONE MARROW BIOPSY          HOLLINGS CANCER CENTER            EVALUATE BLOOD CELLS AND
AND ASPIRATE                BLOOD AND MARROW CLINIC           MARROW

RADIATION ONCOLOGY          1ST FLOOR                         PROVIDE TOTAL BODY IRRADIATION
                            CLINICAL SCIENCE BUILDING         FOR SOME TRANSPLANT
                                                              TREATMENTS

CATHETER PLACEMENT          INTERVENTIONAL RADIOLOGY,         INSERT CENTRAL LINE CATHETERS
                            5TH   FLOOR CHILDREN’S HOSPITAL   (IV ACCESS)

BONE MARROW HARVEST         AMBULATORY SURGERY                OBTAIN BONE MARROW
                            1ST FLOOR RUTLEDGE TOWERS
PRE-OPERATIVE WORK-UP       RUTLEDGE TOWERS, 1ST FLOOR        ANESTHESIA EVALUATION

HEMAPHERESIS UNIT           CHILDREN’S HOSPITAL               PLACE WHERE COLLECTION OF STEM
                            2ND FLOOR                         CELLS TAKES PLACE

HOLLINGS CANCER CENTER      HOLLINGS CANCER CENTER            PROVIDE CARE FOR OUTPATIENTS
BLOOD AND MARROW                                              DURING DAY
TRANSPLANT TREATMENT AREA
8 WEST INPATIENT UNIT       NORTH TOWER, MAIN HOSPITAL        PROVIDE CARE FOR INPATIENTS
                            8TH FLOOR
ADMISSIONS                  1ST FLOOR, MAIN HOSPITAL          PAPERWORK FOR ADMISSIONS


                                                                                   58
IMPORTANT PHONE NUMBERS




EMERGENCY: 911


MUSC OPERATOR EMERGENCY AFTER HOURS: 843-792-2123
*Ask the operator to page the Bone Marrow Coordinator on call


YOUR PHARMACY: __________________________________________


YOUR LOCAL DOCTOR: _____________________________________


YOUR LOCAL HOSPITAL: ____________________________________


YOUR LOCAL ONCOLOGIST: _________________________________


SOCIAL WORKER: ___________________________________________


DIETICIAN: __________________________________________________


EMERGENCY CONTACT: ______________________________________


OTHERS: ______________________________________________________

________________________________________________________________

________________________________________________________________




                                                                   59
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                                                          61

				
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