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autologous

VIEWS: 4 PAGES: 40

									                               autologous




Form 7389-117 PS (Rev. 3/10)
             Blood & Marrow Stem Cell
                     Transplant Basics
                                                   Definitions
                                          Sources of Stem Cells
                                          Types of Transplants
Bone Marrow Basics
      Bone marrow is the soft, sponge-like material found inside our bones.
      It contains stem cells that are capable of producing all the blood cells in
      our body. The bone marrow has the greatest number of stem cells;
      however, a small number of stem cells can also be found in the blood-
      stream. Stem cells divide to form more stem cells, or mature into white
      blood cells, red blood cells, or platelets.
                                        Definitions
                                        Stem cells: Cells that develop into one of
                                        the three types of mature blood cells, red
                                        blood cells, white blood cells, or platelets.
                                        Stem cells can also divide to become new
                                        stem cells. Without stem cells one would
                                        not be able to live.

                                        Red blood cells (RBC): RBC’s contain
                                        hemoglobin (Hgb), a protein that carries
                                        oxygen from the lungs to the rest of the
                                        cells in the body. When RBC’s decrease
                                        in number, one is said to have anemia.
                                        Anemia makes one pale and feel short of
                                        breath.

                                        White blood cells (WBC): WBC’s are
                                        the body’s defense against infection. There
                                        are many different types of WBC’s. Each
                                        of the different types of white blood cells
                                        plays a specific role in destroying organisms
                                        that are foreign to the body. Low WBC’s
                                        can leave one at increased risk of infection.

                                        Platelets (PLT): PLT’s are sticky, disc-
                                        shaped cells that enable the blood to clot
                                        properly, which prevents excess bleeding.
                                        When platelets are low, one is at increased
                                        risk of bleeding. Low platelets can cause
                                        bruising, nose bleeds or bleeding gums.
                                   -1- -1-
               Blood & Marrow Stem Cell
                       Transplant Basics
                                                      Definitions
                                             Sources of Stem Cells
                                             Types of Transplants

Sources of Stem Cells
       Blood and marrow stem cell transplant is a procedure that is used to
        “rescue” the bone marrow that has been destroyed by high doses of che-
       motherapy and/or radiation therapy.

       After stem cells have been given, they travel to the bone marrow where
       they start growing and dividing to begin production of the white blood
       cells, red blood cells and platelets. There are three sources where stem cells
       can be found. Stem cells were first collected from the bone marrow. This
       is how the name “bone marrow transplant” came about. More recently, research-
       ers learned how to stimulate the stem cells in the bone marrow to move
       out into the blood stream where they can be collected. This procedure is
       called “peripheral blood stem cell transplant”. Today, another source of stem cells
       has been found and that is in the umbilical cord of the newborn baby. This
       procedure is called “umbilical cord stem cell transplant”. The umbilical cord is a
       rich source of stem cells; however, there are only enough stem cells in the
       umbilical cord to be used in a transplant for a child or small adult. Research
       is underway to learn how to stimulate the reproduction of these stem cells
       to a greater number to allow a transplant for an average size or large adult.

       Stem cell transplants are performed when
        1. A disease affects the bone marrow causing the bone marrow too not
           be able to produce all the blood cells needed because it either makes
           too many of one cell, as in leukemia, or too few cells as in aplastic
           anemia. The new stem cells, given at the time of the transplant, will
           divide and produce healthy new blood cells.

        2. A disease such as lymphoma is best treated with high doses of
           chemotherapy and/or radiation therapy which not only destroys the
           disease but the bone marrow. The transplant allows the bone marrow
           to be “rescued” by the stem cells given at the time of the transplant.




                                     -2-
       Blood & Marrow Stem Cell
               Transplant Basics
                                             Definitions
                                    Sources of Stem Cells
                                    Types of Transplants

                                  Types of Transplants
                                  There are three types of transplants:

                                  In autologous (aw-to´l-o-gus)
                                  transplants, patients receive their own
                                  stem cells.

                                  In syngeneic (sin-je-nay´-ik) transplants,
                                  patients receive stem cells from their iden-
                                  tical twin.

                                  In allogeneic (al-o-je-n´ay-ik)
                                  transplants, patients receive stem cells
                                  from someone other than the patient or
                                  an identical twin. The patient’s brother or
                                  sister may serve as the donor (called a
                                  sibling transplant), or a person not related
                                  to the patient (call an matched unrelated
                                  donor transplant or a MUD transplant)
                                  may be used.

The three types of transplants are used to restore function of the bone
marrow after high dose chemotherapy and/or radiation therapy. The
allogeneic or syngeneic transplant is used for patients who do not have a
functioning bone marrow to provide a new, functioning bone marrow. Each
type of transplant has benefits and risks. The type of transplant that will be
best for you will be carefully decided between you and the transplant doctor.




                            -3-
            The Autologous Transplant
                                                        Timeline

The Autologous Transplant
                                         First Visit
   Each patient and his/her disease is
   reviewed by the transplant doctor     Evaluation
   to decide what type of transplant
   would hold the most promise of        Insurance Approval
   a cure or control of the disease
   with the least amount of risk.
                                         Consent Meeting
   When it is decided that an autol-
   ogous transplant would be the
   best option, several procedures       Mobilization
   are done before the start of the
   transplant. This timeline shows       Stem Cell Collection
   the different procedures that will
   be done prior to, during, and after      Recovery
   the transplant. A calendar will be
   give to you that will provide dates
   when these procedures will take       Start of Conditioning Therapy
   place. Although the sequence of
   procedures never changes, the         Transplant
   dates may because of unforeseen
   events.                                  Recovery

                                         Going Home




                                         Day 100 Evaluation




                                   -4-
                                                        First Visit
                                Pre-Transplant Evaluation

                                       First Visit & Evaluation
    First
First Visit Visit
                                       At your first visit, the transplant doctor
Evaluation                             will take a complete history of your
Insurance Approval
                                       current disease, previous treatments and
                                       other medical history. A physical exam
Consent Meeting                        will also be done. The transplant doctor
                                       will talk to you about what is involved in
Mobilization
                                       a transplant and answer any questions
Stem Cell Collection                   you have.
   Recovery                            If you and your transplant doctor decide
                                       to proceed, a pre-transplant evaluation
Start of Conditioning Therapy
                                       will need to be done. The pre-transplant
Transplant                             evaluation includes several tests that
   Recovery
                                       are performed to see whether or not
                                       your body will be able to tolerate the
Going Home
                                       transplant. The test results also serve as
                                       a “baseline” so that they can be com-
                                       pared with the same tests completed
                                       after the transplant. This is done to see
Day 100 Evaluation                     if any organs were damaged during the
                                       transplant. The tests are done as an out-
                                       patient. Each patient’s history and disease
                                       determines what tests are ordered, so all
                                       tests described below may not be com-
                                       pleted for every patient.




                                 -5-
                                                            First Visit
                                   Pre-Transplant Evaluation
                                                                  (continued from previous page)


Bone marrow biopsy and aspirate: A small amount of marrow is collected from
the hip bone to determine how well your bone marrow is working and whether
or not disease is present in your marrow. Sedation is used during this procedure.
A specially trained registered nurse will give you drugs through your vein that allow
you to sleep through the procedure. This makes the test virtually pain free. You
may have some discomfort following the test that you can treat with Tylenol® if
needed.

Pulmonary Function tests: This study determines how well your lungs are working
by measuring the amount of air you breathe in and out and how well the oxygen in
your lungs crosses into your blood.

Echocardiogram: This test uses sound waves to make a picture of your heart that
tell us how well your heart pumps the blood.

Electrocardiogram (EKG): This test also
shows how well your heart is working.

CAT scan: This test is done to see if there is
any disease present.

PET scan: This test is done to see if there is
any disease present.

Gallium scan: This test is done to see if
there is any disease present.

Metastatic bone survey: This test is done to
see if there is any disease present.

Blood & Urine tests: These tests are done
to see how well your kidneys, liver and bone
marrow are working.

Infectious Disease tests: This blood test is
done to check for any infections like hepatitis.

The transplant doctor will meet with you to
talk to you about the test results. Once it is
decided that a transplant will be part of your
treatment, the transplant team will meet with you and make plans to begin the
transplant process.




                                      -6-
                                                  Insurance Approval
                                                             Financial Counseling
                                                                 Consent Meeting
                                Insurance Approval
First Visit                            At the first visit, you will be asked for information on your
Evaluation
                                       insurance company. The transplant team will work closely
                                       with you and your insurance company to get approval for
       Insurance
Insurance Approval
       Approval                        the transplant once it is decided to move forward with the
Consent Meeting
                                       transplant. In the event that your insurance will not cover a
                                       transplant, or if you don’t have insurance, other options that
Mobilization                           might be available will be discussed with you.
Stem Cell Collection
                                Financial Counseling
   Recovery                            Medical billing can be confusing. Because some of the mem-
                                       bers of your medical and transplant team work “behind the
Start of Conditioning Therapy
                                       scenes,” you may receive bills from persons or organizations
Transplant
                                       with whom you are not familiar. Sorting through the paper-
                                       work is important because you want to be sure the bills you
   Recovery
                                       are paying are appropriate for the services you have received.
Going Home

                                       At the Avera Cancer Institute, a financial counselor is always
                                       available to help you sort through your bills and assist you in
                                       filing your insurance claim forms. There is no charge for an
Day 100 Evaluation
                                       initial visit with the financial counselor, and, for a small annual
                                       charge, our financial counselor will completely manage your
                                       medical billing file and will contact Medicare and/or your
                                       insurance company on your behalf. We strongly encourage
                                       all of the patients to visit with the financial counselor since
                                       we know how complicated bills and insurance can get during
                                       transplant.

                                Consent Meeting
                                       A consent meeting will be scheduled after the pre-transplant
                                       tests have been completed, and you have decided to go
                                       forward with the transplant. Family members and/or close
                                       friends are welcome to come with you. The transplant pro-
                                       cess will be reviewed including the stem cell collection, the
                                       chemotherapy drugs that will be given during the transplant,
                                       common side effects and dates for the transplant. This is
                                       done so that you have all the information you need and get
                                       all your questions answered before the transplant. Consent
                                       forms for the transplant will be given to you to read at home.
                                       We will have you sign them prior to starting the transplant
                                       process.

                                         -7-
   Questions To Ask
The Transplant Team

 n	   What type of transplant would be best for me?
 n	   Will the transplant be done as an outpatient or
      in the hospital?
 n	   What will need to be done prior to my
      transplant?
 n	   How long will I be hospitalized or need to be
      in the city?
 n	   What procedures are done as an outpatient or
      in the hospital?
 n	   What chemotherapy will I receive and what are
      the side effects?
 n	   Will I receive radiation therapy and if so, what
      are the side effects?
 n	   What support or counseling services are
      available?
 n	   Is there any housing where my family can stay?
 n	   What should I bring if I am hospitalized for the
      transplant?
 n	   Who will be able to visit me while I am in the
      hospital?




      -8-
                                          To Be Well
                                                      Exercise
                                                     Nutrition
                                                      Support
To Be Well
   There are several things that you can do to prepare for the trans-
   plant. Eating healthy, exercising and managing your stress are three
   important things you can work on. Putting your body in the best
   physical and emotional condition before transplant will make a
   difference during the time of transplant.

      Exercise: It is important to keep your strength up prior to the
      transplant. Light exercise will help to keep your muscles strong
      and energy level up. Simple exercises such as walking or using a
      stationary bicycle are good for maintaining or building strength.

      Nutrition: Chemotherapy can cause taste changes and loss of
      appetite. However, it is very important that you try to eat a well
      balanced diet that includes protein, vitamins and minerals. Good
      nutrition provides your body with the fuel it needs for energy
      and healing. Foods that are high in calories and protein will help
      you maintain your weight and replace the nutrients that are
      needed for healing your body from the side effects of the che-
      motherapy. Some people like different types of foods at different
      times of the day. The key is to eat whatever you like whenever
      you can. Making sure that you are drinking plenty of fluids is also
      important. Drinking 1-2 liters of liquids a day will help with keep-
      ing your body hydrated and your kidneys working well.

      Support: This is a time of stress. Finding support from family,
      friends or professionals is important. You have been dealing with
      your disease for several months or years and now are looking
      to move forward to the transplant itself. Coping with the stress
      is important for your overall health and well-being. It is common
      that during transplant additional support is needed, and many of
      our patients have found it to be helpful. If you need more sup-
      port, please let us know, and we can help.

      The Bone Marrow Support Group meets each month from
      September - May at the Avera Cancer Institute. You and your
      significant other are welcome to come and talk to others who
      have gone through a transplant. Please ask the team for specific
      meeting dates and times.



                      -9-
               The Autologous Transplant
                                 Catheter Placement & Care
                                Catheter Placement & Care
First Visit                        A small flexible tube called a catheter with
Evaluation                         two or three “lumens” or separate lines will be
                                   inserted into a large vein in your chest under
Insurance Approval
                                   the collarbone.
 Catheter Placement
Consent Meeting
                                   This surgical procedure will be done as an
Mobilization                       outpatient. The insertion may cause some dis-
                                   comfort at first and some soreness may be felt
Stem Cell Collection
                                   for several days. You will be given some pain
   Recovery                        medication to help control this discomfort, or
                                   you can take acetominophen (Tylenol®). Avoid
Start of Conditioning Therapy      ibuprophen, (Advil® or Motrin®) and asprin as
                                   these medications prevent your platelets from
Transplant
                                   working like they should, so you are more
   Recovery
                                   prone to bleeding.
Going Home
                                   This catheter will be of great assistance to you.
                                   Through this catheter blood can be drawn for
                                   blood tests and can be used to give chemother-
                                   apy, fluids, drugs such as antibiotics, blood
Day 100 Evaluation
                                   products and even the stem cells for the
                                   transplant. The catheter decreases the need to
                                   insert needles into your arms or hands. Since
                                   the catheter usually remains in place for several
                                   months, you and/or your family members will
                                   be taught how to care for it. The nurses at
                                   Avera Hematology and Transplant and on the
                                   Avera McKennan Transplant Unit will help teach
                                   you how to care for the catheter.




                                   -10-
              The Autologous Transplant
                                                            Mobilization

First Visit
                                Mobilization
                                   Stem cells are found in the bone marrow and
Evaluation                         the peripheral blood. Stem cells are needed in
Insurance Approval
                                   order to “rescue” the bone marrow that has
                                   been wiped out from the high dose chemothera-
Consent Meeting                    py and/or radiation given during the transplant. It
                                   is the stem cells that will restore the function of
   Mobilization
Mobilization
                                   your bone marrow. Therefore, stem cells need
Stem Cell Collection               to be collected before the high dose chemother-
                                   apy is given. Stem cells are collected from one
   Recovery
                                   of two sources, either the bone marrow or the
Start of Conditioning Therapy      peripheral blood. The process for collecting the
                                   stem cells is different depending on which source
Transplant                         is being used. Generally the peripheral stem cell
   Recovery                        collection procedure is done; however, bone
Going Home                         marrow collections can be performed if needed.

                                   Since stem cells are found in our blood but
                                   in low numbers, we need to “mobilize” the
                                   stem cells out from the bone marrow into the
Day 100 Evaluation                 bloodstream. Mobilization is done using chemo-
                                   therapy and growth factors (such as Neupogen®
                                   or Leukine®) or using growth factors alone.
                                   (For more information on the drugs used for
                                   mobilization see the additional information
                                   pocket at the back of the booklet). Mobilization
                                   is most often done as an outpatient at Avera
                                   Hematology and Transplant.




                                   -11-
                     The Autologous Transplant
                                                                 Mobilization
                                As mentioned previously, the two types of mobilization are
First Visit
                                chemotherapy and growth factors or growth factors alone.
Evaluation                      These two types of mobilization are described below.
Insurance Approval
                                Chemotherapy and Growth Factors
Consent Meeting                         It is very important that at the time of transplant
                                        the amount of disease present is minimal or
    Mobilization
Mobilization
                                        undetectable. During the evaluation for transplant,
Stem Cell Collection                    tests will be done to determine the amount of
                                        disease present. If there is a significant amount of
   Recovery
                                        disease, the transplant doctor may decide that you
Start of Conditioning Therapy           will need some additional chemotherapy prior to
                                        the collection of the stem cells. Arrangements will
Transplant                              be made to give you a specific number of chemo-
   Recovery                             therapy treatments with the last treatment being
Going Home                              the mobilizing chemotherapy. This mobilizing che-
                                        motherapy is aimed at further treating the
                                        disease and preparing for the collection of stem
                                        cells. The mobilizing chemotherapy will be given,
                                        and your blood counts will be followed. The che-
Day 100 Evaluation                      motherapy will cause the blood counts to fall, and
                                        during this time you will be at risk for
                                        infection and bleeding. On the fifth day after
                                        the chemotherapy, you will start to receive daily
                                        growth factor. This growth factor will decrease
                                        the number of days that your WBC is low. Once
                                        your blood counts start to recover, the stem cells
                                        will flood the bloodstream. When the WBC is
                                        equal to or greater than 2,000, stem cell collec-
                                        tion will begin. Unfortunately this mobilization
                                        doesn’t allow for a lot of predictability for when
                                        the stem cells will be collected as it is completely
                                        dependent on when the WBC recovers. See the
                                                                                                Chem o




                                                                                       8,000
                                                                                                                          or

                                        graft below for an illustration of this process.
                                                                                                                 Gr t Fact



                                                                                        4,000
                                                                                                                   ow h




                                                                                        2,000
                                                                                  WBC




                                                                                        1,000

                                                                                         500



                                                                                                1        2 3 4      5 6         7 8 9 1
                                                                                                                               Days

                                         -12-
          The Autologous Transplant
                                                     Mobilization
                                                            (continued from previous page)


                                 Growth Factors Alone
First Visit
                                       If at the time of the evaluation the tests
Evaluation                             show that there is minimal or undetect-
                                       able disease present, the transplant doc-
Insurance Approval
                                       tor may decide to use growth




                                                                                                           Chem o
                                                                                                   8,000
Consent Meeting                        factors only for the mobilization. This
                                       mobilization begins on a Friday, at which                   4,000
Mobilization
                                       time you will start daily growth factor
Stem Mobilization                      injections for five days, and, on the fifth                 2,000




                                                                                             WBC
     Cell Collection
                                       day, the stem cells will be collected. This
   Recovery                            mobilization allows for a fair amount                       1,000
                                       of predictability as to when the stem
Start of Conditioning Therapy                                                                       500
                                       cell collection will begin. See the graph
Transplant                             below for an illustration of this process.
   Recovery                                                                                                1        2

Going Home




Day 100 Evaluation




                                -13-
              The Autologous Transplant
                                         Stem Cell Collection
                                Stem cell collection is done using a procedure
                                called apheresis (ay-fer-ee-sis). This is an outpa-
First Visit
                                tient procedure performed by specially trained reg-
Evaluation                      istered nurses supervised by the transplant doctor.
Insurance Approval              The catheter you had placed will be used for stem
Consent Meeting
                                cell collection. The catheter has two tubes that will
                                be connected to the apheresis machine. Through
Mobilization                    the catheter, your blood is removed and returned
                                to you by the apheresis machine. As your blood
Stem Cell Collection
Stem Cell Collection
                                travels through the apheresis machine, the stem
   Recovery                     cells are separated from the other blood cells in
                                your blood and are removed and collected into
Start of Conditioning Therapy   a separate bag. The rest of the blood is returned
                                back to you.
Transplant

   Recovery                     Apheresis is painless and causes very few side
Going Home
                                effects. Common side effects are lightheadedness,
                                chills, numbness around the lips, and cramping in
                                the hands. These side effects are due to a lowering
                                of the calcium in your blood. The apheresis nurse
                                will give you calcium during the procedure to
Day 100 Evaluation              prevent these side effects from happening.
                                The apheresis procedure lasts about 4-6 hours.
                                After each collection, we need to determine the
                                number of stem cells that have been collected. The
                                target number of stem cells is at least 2.0 x 106 per
                                kilogram of patient weight or 2 million cells per
                                kilogram. Apheresis is done daily until the target
                                number of cells is reached. The average number of
                                times the apheresis procedure needs to be done
                                varies, but generally speaking, 2-4 collections are
                                needed. After each day of collection, the stem
                                cells are frozen and kept frozen until the time of
                                the transplant.




                                -14-
                                              In The Hospital
While you are in the hospital, your room will be located in the Transplant Unit on
3East located on the third floor of Avera McKennan Hospital & University Health
Center. Your address and telephone number will be:

                                    Avera McKennan Hospital
                                   & University Health Center
                                           (Your Name)
                                              3 East
                                      800 East 21st Street
                                Sioux Falls, South Dakota 57105
                         (605) 322- _ _ _ _ (your room number)




During your stay in the transplant unit, you will be cared for by the transplant team
which includes your registered nurse, doctor, nurse practitioner, coordinator,
pharmacist, social worker and dietician. The transplant registered nurses have been
specially trained in stem cell transplant.

A special numbering system has been developed to track the transplant process.
In both the inpatient and outpatient settings, we will refer to these days as minus
or plus days. Minus days are the days prior to transplant when you are receiving
chemotherapy and/or radiation. The day that you receive your stem cells is
considered “Day 0”. The plus days are the days after your transplant. This is an
example:

  Day – 5           You are admitted to the hospital, and chemotherapy begins
  Day – 4           Chemotherapy continues
  Day – 3           Chemotherapy continues
  Day – 2           Chemotherapy continues
  Day – 1           Chemotherapy continues, or you have a day of rest
  Day 0             Transplant day
  Day + 1            These are the days after your transplant
  Day + 12 – 20     Your bone marrow starts to recover, and your blood counts
                    begin to increase
  Day + 100         An evaluation is done to check the status of the disease and
                    your organ function
                                     -15-
                                             In The Hospital
                                                                  (continued from previous page)

Your Transplant Room
       The transplant rooms are single rooms with a private bathroom and a
       special air filtering system. The rooms are small, but we will try to assist you
       with anything that you are interested in having in your room.

Air Handling System
       The transplant rooms are equipped with HEPA (High Efficiency Particulate
       Air) filters that create positive pressure in your room. The air that enters your
       room comes from the hallway and passes through several filters before enter-
       ing your room. The air is pushed across the room towards the door. In order
       for the filtering system to work, the door to your room must be closed tightly
       at all times.

TV and VCR’s
       Each of the transplant rooms have a VCR and TV; therefore, you should feel
       free to bring your VCR tapes from home. The Avera McKennan Library also
       has a nice size video library. A listing of movies will be provided to you, and
       you can order movies to be delivered to your room.

What to Bring to the Hospital
       Since you will be spending some time in the hospital, there are some things
       that you may want to bring from home to help you feel comfortable. Here
       are some suggestions:
         n	  Pictures of family, friends, and pets
         n	  A portable radio or CD player
         n	  Your favorite video tapes
         n	  A lap top computer (internet access can be arranged)
         n	  Comfortable clothes or pajamas
         n	  Slippers and socks
         n	  Comfortable shoes for walking in the halls
         n	  An answering machine – if you don’t feel like talking, your friends can
             leave a message, and you can call them back when you feel up to it
         n	  Stationary and address book
         n	  Personal hobbies- knitting, puzzles, game boys or other handheld
             games, books, magazines, a journal
         n	  Relaxing, stress relieving tapes or CD’s
         n	  Your favorite pillow
         n	  An extra soft baby toothbrush, favorite lotions, shampoos, soaps,
             tooth paste, and deodorant (Try to bring all new items)
         n	  An electric razor

General Guidelines
       Hand Washing
       Anyone entering your room including family, friends and hospital staff will be
       required to wash their hands with an antiseptic soap. Hand washing is the best
       way to prevent the spread of infection.
                                   -16-
                                                  In The Hospital
                                                                       (continued from previous page)

Masks
        There are many germs in a hospital, so anytime you leave your room you will
        be required to wear a mask. The mask is a simple measure that you can take to
        decrease your risk of breathing in germs from other patients or sick visitors. The
        transplant team may also put on a mask before entering your room if they are
        feeling the least bit unwell. However, you can be assured that they will not be
        in your room if they are ill.

Family and Visitors
        Family and friends are a very important part of the support you need during
        your transplant and recovery. They should feel free to visit as long as they fol-
        low the guidelines below. A “Visitor Screening Guidelines” sign will be posted
        on your door for visitors to review. The general rule of thumb is, if visitors are
        feeling the least bit unwell, they should not visit you in person but could contact
        you by phone or send a card. All visitors should check with your nurse before
        entering your room.


                                                       Visitor Guidelines
          All persons visiting will need to wash their hands
          before entering your room

          Visitors should not visit if they have the following:
             n	 A cold or upper respiratory infection, or any

                known infection
             n	 Flu like symptoms

             n	 Diarrhea

             n	 Infectious rash, shingles, skin infection, or open

                sores on their hands
             n	 Recent exposure to an infectious disease

             n	 Chicken pox in the last 6 weeks or a rash that

                looks like chicken pox
             n	 Oral polio in the last 6 weeks

             n	 Flu vaccine or other vaccine in the last 2 weeks

             n	 Artificial nails unless they wear gloves when in

                the room

        Although we are concerned about your health and have set up visiting guide-
        lines, we want you to know that you should not be afraid of physical contact.
        Hugging and touching is an important way to communicate love and concern,
        and there is no reason why physical contact should be feared or avoided during
        your transplant.

        The nurses are aware that some days you may not feel up to visitors. If you
        have one of these days, don’t hesitate to let your nurse know. They will put a
        sign on your door to let visitors know they should not enter. Your nurse will
        make sure that you will get any messages that the visitors would want to leave.

                                        -17-
                                                In The Hospital
Flowers and Plants
            Fresh flowers or plants are not allowed in your room because of the dirt
            and stagnant water that can sometimes carry harmful germs. Artificial
            flowers are allowed if they don’t have any dried plant material or sphag-
            num moss included in the arrangement. It is a good idea to let your family
            and friends know about this restriction. Non-latex balloons and other gifts
            are allowed.

Laundry
            We encourage you to have a friend or family member bring your clothes
            home to wash. Use water as hot as possible without harming the fabric.


                                               The Hospital Routine
The nurses are specially trained to care for the transplant patient. It is the nurses
who will be with you every minute of the day; therefore, it is important for you to
let them know of any concerns you have during your stay.

The nurses will monitor your
  Vital signs and do a physical assessment
            The nurses will take your blood pressure, pulse and temperature and do a
            physical assessment to monitor for any changes that might be occurring,
            such as a fever.

  Blood work:
         The nurses will draw blood from your catheter at least once a day. This is
         done to monitor your blood counts, kidney function and liver function and
         other things such as potassium, sodium and magnesium. This is generally
         done at 5:00 am – 6:00am so that the results are available when the rest of
         the transplant team sees you and appropriate orders can be written.

  Fluids:
            The nurse will monitor how much you eat, drink, and go to the bathroom.
            It is important to keep track of the fluids you are taking to make sure that
            you are getting enough fluids for good hydration and not retaining the
            fluids.

   Weight:
          The nurses will weigh you daily to monitor if you are getting enough or too
          much fluid as well as enough calories. This is usually done at the same time
          your blood is drawn.

  Nausea, pain or other problems:
          The nurses will ask you often if you are having any nausea, pain, or other
          problems. It is very important to keep all of your transplant team informed
          of how you are doing. If problems are reported early, actions can be taken
          quickly to prevent them from getting more serious.
                                       -18-
                                                 In The Hospital
 What You Can Do During Your Transplant

Nutrition
            Food is important for energy, healing,
            and keeping your digestive system
            working well. The chemother-
            apy you will receive for your
            transplant can change the way
            food tastes and cause nausea
            and mouth sores. For these rea-
            sons, you may not feel like eating
            much when you are in the hospital.
            However, it is important for you
            to eat and drink. The dietician will
            visit with you to provide differ-
            ent menus to choose from and
            to arrange for snacks. There is
            a nutrition center on the trans-
            plant unit that is stocked with
            different items that are avail-
            able to you any time of day.
            If you are unable to eat, the doctor
            and dietician will order for you to start on intravenous nutrition
            until you are able to eat on your own. Again, keep your nurse
            informed of your appetite level so that we can stay on top of
            your needs.

Exercise
            Staying physically fit is very important. Exercise keeps your
            muscles and lungs in good shape. It will also keep you healthier,
            prevent delays in your discharge from the hospital, and allow
            you to do more things at home once you are discharged.
            Getting out of your room and walking around the nurses sta-
            tion or sitting in the chair are good forms of exercise. If the
            side effects of the chemotherapy get you down, and you can’t
            get the exercise you need, a physical therapist can come to
            your room and help you with some simple exercises.




                                        -19-
 What You Can Do During Your Transplant
                                                                    (continued from previous page)


Mouth Care
               Mouth sores are a common side effect of chemotherapy; therefore, it is
               important for you to take good care of your mouth. Our mouths natu-
               rally carry a heavy load of bacteria. When your mouth begins to develop
               sores, the bacteria can enter in to your bloodstream and cause infection.
               A medicated mouthwash will be given to you to use after each meal and
               at bedtime. If your mouth develops sores, this mouthwash can be used
               as often as every hour. The mouthwash will help decrease the bacteria
               in your mouth and prevent further sores from developing. We also ask
               that you bring a soft toothbrush (a baby or children’s toothbrush) to the
               hospital. The soft toothbrush will be gentle on your gums. Dental floss
               is not allowed during this time since it causes gum irritation and bleed-
               ing. Being faithful to good mouth care will help decrease the chance of
               mouth sores or infection.


             Things You Can Do To Keep Your Mouth Healthy
                        n	 Use your mouthwash after each meal and bedtime, more often

                            if needed
                        n	 Drink lots of water or other fluids

                        n	 Use sugarless gum or hard candy to keep your mouth moist

                        n	 If you have dentures, make sure that they fit well


Sleep
         A good night’s sleep is important for
         one’s body. Sleep allows time for the
         body to rest and heal itself. Often, when
         you are away from home you tend not
         to sleep as well. Many people have dif-
         ficulty getting a full night of sleep when
         they are in the hospital. There are many
         reasons why this happens. In the hospi-
         tal you are woken early in the morning
         for blood draws and given medication
         that disturbs your sleep. You are also
         less active, and you may not feel well. If
         you develop sleeping difficulties, let your
         nurse know. Medications have been
         ordered for you to use. Other things
         you can try to help you fall asleep are
         listening to relaxing music, having your
         nurse give you a back rub before bed,
         or taking a warm shower during the
         evening.



                                       -20-
                                                     In The Hospital
                                            The Conditioning Therapy

The chemotherapy and/or radiation therapy you will receive during transplant is
very strong. Great attention to detail is taken as the transplant team plans for your
conditioning therapy. The goal of the conditioning therapy is to destroy any disease
that might still be remaining in your body, to suppress the immune system and to
make room for the stem cells that will be given.


          First Visit
                                                                Chemotherapy
                                                    The chemotherapy you will receive during
          Evaluation                                transplant will be at much higher doses
                                                    than the chemotherapy given to you
          Insurance Approval
                                                    before transplant. This high dose chemo-
          Consent Meeting                           therapy is so strong that it will hopefully
                                                    overwhelm the remaining disease and kill
          Mobilization
                                                    it. Unfortunately the high dose chemo-
          Stem CellConditioning
          Start of Collection     Therapy           therapy will not only kill any remaining
                                                    disease but will also “wipe out” your
             Recovery
                                                    bone marrow. This will prevent it from
          Start of Conditioning Therapy
                                                    manufacturing the white and red blood
                                                    cells and platelets that you need. The
          Transplant                                reason we are able to give the high dose
             Recovery                               chemotherapy is because we have your
          Going Home
                                                    stem cells that were collected in advance.
                                                    These stem cells will be able to rescue
                                                    your bone marrow from the effects of
                                                    the chemotherapy and allow your bone
                                                    marrow to recover and produce normal
          Day 100 Evaluation                        blood counts.




                                             -21-
                                The Conditioning Therapy
                                                                  (continued from previous page)


Conditioning therapy begins after admission to the hospital or at Avera Hematology
and Transplant if you are having an “outpatient” transplant. For specific information
about your conditioning therapy, see the “Additional Information” pocket at the
back of this booklet. During the days of chemotherapy, you will receive anti-nausea
medications on a schedule to decrease your risk of becoming nauseated. You will
also be receiving plenty of intravenous fluids to make sure that you are flushing the
chemotherapy out of your body. Most often the chemotherapy remains in the body
for only 24 to 48 hours. The days of chemotherapy are numbered in minus num-
bers, and we count backwards to Day 0. On Day 0, there is no remaining chemo-
therapy in your body, and the stem cells can be given at that time.


                       Total Body Irradiation Therapy
                            If you will be receiving radiation therapy as a part of
                            your preparative therapy, the radiation is given once all
                            the chemotherapy is completed. For more information
                            on total body irradiation therapy see the “Additional
                            Information” pocket at the back of this booklet.




                                    -22-
                                                    In The Hospital
                                               The Day of Transplant
                                Stem Cell Infusion (Day 0)
First Visit                            The day the stem cells are infused is called “Day 0”.
                                       The infusion of stem cells will take place after the
Evaluation
                                       chemotherapy is done and enough time has passed
Insurance Approval                     to make sure no chemotherapy remains in your
                                       body. Unlike chemotherapy, radiation therapy does
Consent Meeting
                                       not require any time to leave your body. Once
Mobilization                           the radiation therapy is done, the stem cells can be
                                       given immediately afterwards without any harmful
Stem Cell Collection
                                       effect on them. The infusion of stem cells can hap-
   Recovery
                                       pen anytime during the day. The transplant team
                                       will set up a time based on your last dose of che-
Start of Conditioning Therapy          motherapy or radiation treatment. Your nurse will
                                       let you know what time the infusion is scheduled,
TransplantTransplant
                                       so family members or friends who want to be there
   Recovery                            can plan accordingly.
Going Home
                                       The infusion of stem cells is done in your room.
                                       There are very few problems with the infusion of
                                       stem cells, but we do monitor you closely, so if
                                       problems arise we can take care of them quickly.
Day 100 Evaluation                     Before the infusion, your nurse will connect you to
                                       a couple of monitors. A clip will be placed on your
                                       finger to measure the oxygen level in your blood.
                                       Patches are put on your chest which are con-
                                       nected to a machine in order to monitor your heart
                                       rhythm, and a blood pressure cuff will be placed
                                       on your arm to monitor your blood pressure and
                                       pulse. A special blood tubing will be connected to
                                       your catheter which is used to infuse the stem cells
                                       slowly through your catheter similar to red blood
                                       cells or platelets.




                                          -23-
                                 The Day of Transplant
                                                           (continued from previous page)


There are few side effects of the infusion of stem cells. The side effects are
similar to an allergic reaction such as hives, shortness of breath, or chest
tightness. If these occur, medications will be given to reverse them. If the
stem cells have been frozen prior to the transplant, the preservative that
they have been frozen in can cause some unwanted side effects. The most
common side effect is nausea. If you are nauseated before or become
nauseated during the procedure, anti-nausea medication can be given. The
preservative is released out of your body through your lungs. When you
breath out the preservative, you will have a funny taste in your mouth that
will last only a few minutes. Your visitors, however, will be able to smell a
strong order on your breath for 1-2 days.

After the stem cells enter the bloodstream, it will take them around 24
hours or so to travel into the bone marrow. Once in the bone marrow,
the stem cells will begin the process of producing new white blood cells,
red blood cells, and platelets. It generally takes these stem cells between
12 – 20 days to make enough cells to be measureable in the blood sample.
Your blood counts will be checked daily, and when the counts start to
increase, we know that the stem cells have “engrafted”. Even though your
blood counts have recovered, recovery of your immune function takes
much longer—up to several months for autologous.




                            -24-
                                                               In The Hospital
                                                    Side Effects of Transplant
                                The time between the infusion of stem cells and engraftment is the
First Visit                     time when the side effects of the high dose chemotherapy and/or
                                radiation therapy can appear. Even though the chemotherapy and/
Evaluation
                                or radiation therapy is gone from your body, its effect on your bone
Insurance Approval              marrow and other body organs continues. Because your bone mar-
                                row is not able to function normally, you will not have the white
Consent Meeting
                                blood cells to fight infection or platelets to prevent bleeding. That
Mobilization
                                is why infections and bleeding may happen during this time. Other
                                common side effects are: nausea and/or vomiting, fatigue and weak-
Stem Cell Collection            ness, loss of appetite, mouth sores, hair loss, and diarrhea.
   Recovery                     This is the time when it is important that you and the transplant
                                team work together to identify problems early. Changes in your
Start of Conditioning Therapy   care need to be made quickly to prevent any of these side effects
                                from becoming serious. Your nurse will monitor you throughout
Transplant
                                the day and night. The transplant team will closely review all your
   Recovery Recovery            blood work and check you over several times each day. You need
Going Home                      to report any changes or concerns that you have to your nurse
                                or other transplant team members regardless of the time of day.
                                Together, as a team, we will try to keep on top of problems.
                                Below is a listing of common side effects. This listing is not complete.
Day 100 Evaluation
                                There are other side effects that may be specific to the transplant
                                therapy you received. For these side effects, see the “Additional
                                Information” pocket at the back of this booklet.

                         Nausea and Vomiting
                                Avera Hematology and Transplant is committed to the prevention
                                of nausea. You will receive anti-nausea medication on schedule until
                                Day +1. After this time, medications will be available; but you will
                                need to ask for them. It is important to request the medication if
                                you feel the slightest bit of nausea. Staying on top of the nausea will
                                prevent it from progressing to vomiting. Below are some additional
                                ways you can prevent nausea:

                       Eat frequent, small meals throughout the day
                       Take anti-nausea medications a half hour before meals
                       Drink plenty of fluids before and after meals but not with the meal
                       Eat foods at or below room temperature
                       Avoid odors that offend you such as perfumes
                       Have the nurse remove the lid on the tray before bringing it in the room
                       Eat what you can; don’t force eating
                       Drink carbonated beverages
                       Don’t be afraid to turn down your food tray and request something different
                       Select soft foods such as soups, puddings, jello

                                                     -25-
                                 Side Effects of Transplant
                                                                 (continued from previous page)

Loss of Appetite
       You may not feel nauseated, but you simply
       don’t have any feeling of hunger. Loss of appetite
       is very common and can continue for some time
       after transplant. Nutrition is important to help
       your body recover and function properly. If you
       have this side effect, forcing yourself to eat will
       be something that you may need to do. You will
       need to think of food as the medicine that you
       need to get better. We certainly don’t want you
       forcing yourself to eat if it causes you to become
       nauseated, but if you are not nauseated, forcing
       yourself to eat something at each meal is impor-
       tant to help re-build your body and keep your
       digestive track working. Those people who are able to
       eat enough to maintain their weight have more energy and recover from
       the transplant easier.

Mouth Sores
       Mouth sores can be a serious problem because they make it hard for you
       to eat, talk, and swallow. Viruses and fungus are two of the most common
       mouth infections. The day after your transplant, you will be started on anti-
       viral and anti-fungal medications to prevent infection in your mouth. If your
       mouth becomes sore or painful, let your nurse know. Pain medication can
       be provided to make you more comfortable. When your bone marrow
       begins to recover and you have white blood cells, any infection or sores in
       your mouth will begin to heal. Below are a listing of different mouth prob-
       lems and some things you can do for them.

   Keep your mouth, tongue, and gums/clean.

    Brush your teeth, gums, and tongue with an extra-soft toothbrush after
    every meal and at bedtime. If brushing hurts, soften the bristles in warm
    water.
    Use a fluoride toothpaste.
    Don’t use mouthwashes with alcohol in them.
    Rinse your mouth 4 times a day with a solution that will be given to
    you for mouth care.
    Leave your dentures out and using them when eating can help prevent
    further sores from occurring. Dentures that don’t fit well can cause additional
    irritation on sore gums.



                                   -26-
                                     Side Effects of Transplant
                                                                      (continued from previous page)
If Your Mouth Is Dry

           Drink a lot of water or suck on ice chips
           Use sugarless gum or sugar-free hard candy
           Use a saliva substitute to help moisten your mouth


If Your Mouth Is Sore
           Choose foods that are easy to chew or swallow such as cooked
           cereals, mashed potatoes or puddings.
           Take small bites, chew slowly, and sip on liquids
           Use gravies, sauces, broth, yogurt or other liquids on your food
           Use high calorie and protein drinks to make up for the calories you
           are not able to eat
           Take pain medication to help control the discomfort


Remember To Avoid
           Sharp, crunchy foods like potato chips, that could scrape or cut your
           mouth
           Foods that are hot, spicy, or high in acid like citrus fruits and juices,
           because these can irritate your mouth

           Toothpicks, because they can cut your mouth


Bleeding
 The high dose chemotherapy and/or radiation therapy will cause your platelets to
 decrease. You may require platelets transfusions. Platelets are the blood cells that
 form a clot when you are bleeding. When your platelets are low, your body does
 not have the ability to form a clot, and you are at risk for bleeding. The mouth,
 nose, skin and intestines are the most common sites to bleed, but bleeding can
 occur anywhere including into your head. Below are some things that you can do
 to decrease your risk of bleeding. Please make sure that you report any unusual
 bleeding to your nurse. Below are some suggestions to decrease your risk for
 bleeding.




                                      -27-
                                             In The Hospital
                                   Side Effects of Transplant
                                                                   (continued from previous page)



      Avoid strenuous activity.
     Do not lift heavy objects
     Lubricate lips to prevent them from cracking and bleeding
     Cleanse mouth with a soft toothbrush
     Avoid dental floss
     Avoid constipation
     Do not strain when moving your bowels
     Use an electric razor for shaving; do not shave if platelet count is less
     than 50,000
     Avoid cutting your nails; instead use an emery board
     Avoid tight-fitting clothes
     Avoid nose-blowing

Infection
  White blood cells are needed to
  fight infection. When you have only
  a few or no white blood cells, your
  risk for serious infection is very high.
  The room air filtration system and
  visitor guidelines are in place to help
  decrease your risk for infection, but
  often times the source of infection is
  from your own body. Your body nor-
  mally carries bacteria on the skin and
  in the mouth, stomach and intestine.
  All these sources can cause you to
  become infected. Your nurse will watch you closely for any signs of infection. The
  most common sign of infection is fever, a temperature >100.5º F. If you develop a
  fever or have other signs of infection, you will be started on intravenous antibiot-
  ics. Testing such as blood work, urine sample and chest x-ray will be done to find
  the cause for the infection. However, there are times that the source cannot be
  found, but aggressive treatment with antibiotics will continue.




                                    -28-
                                                In The Hospital
                                     Side Effects of Transplant
                                                                       (continued from previous page)

Fatigue
  While you are waiting for your bone marrow to recover from the transplant
  therapy, you may feel very tired, fatigued and/or weak. The feeling of fatigue can
  be caused by many things such as the stress of going through transplant, poor
  sleep, feeling unwell, side effects of medications, lack of exercise, poor diet, low
  hemoglobin or red blood cell count, and many other things. Your hemoglobin
  will be checked daily. If your hemoglobin falls less than 8.0, you will receive a
  blood transfusion. Most everyone going through transplant needs to have a blood
  transfusion. This will help to decrease your feeling of fatigue. Fatigue may be
  something that you have for several months after the transplant. Below are a few
  suggestions to decrease fatigue.

     Rest and get a good nights sleep
     Exercise daily, such as walking or doing whatever you can tolerate
     Eat a nutritious diet with enough calories
     Cope in a positive way with the stress in your life
     Save your energy for those things you want to do

Hair Loss
  Total body hair loss happens around 1-2
  weeks after high dose chemotherapy and/
  or radiation therapy. This is temporary, and
  hair is expected to grow back. It will take
  around 3-4 months after the transplant for
  you to start re-growing hair. Use of scarves,
  turbans, or hats may help you feel more
  comfortable.

Diarrhea
  It is common to experience diarrhea as a
  side effect of the chemotherapy and/or radiation therapy because of the effect
  on the intestine. Diarrhea can also be caused by an infection. If you have diar-
  rhea, a sample will be collected and sent to the lab to check if there is a bacteria
  causing it. If there is an infection, an antibiotic will be started to treat it. There are
  medications to decrease the frequency of diarrhea that the nurses can give you. It
  is very important to prevent breakdown of your skin and rectum so that another
  infection doesn’t start. Your nurse will provide you with soft toilet paper or wet
  wipes, have you use protective creams on your skin, and set up a sitz bath in
  your bathroom if necessary.




                                      -29-
                                  Side Effects of Transplant
                                                                (continued from previous page)

Pain
  If you have any pain during your transplant, please
  let your nurse know. Medications have been
  ordered for you for pain control. The Avera
  Hematology and Transplant team is committed to
  pain management. Pain can be easily controlled if
  the right medications are given in the right dose at
  the right time. The transplant team will work with
  you to make sure that you are as pain free as pos-
  sible.

Organ Damage
 The high dose chemotherapy and/or radiation ther-
 apy and other medication use during the transplant
 can cause damage to your organs as mentioned
 below:

    Liver: The liver removes harmful chemicals from
    your body, takes in nutrients from the food
    you eat and makes bile needed for digestion. The
    chemotherapy and/or radiation therapy can cause damage to the liver called
    Veno-Occlusive Disease (VOD). In this condition, the veins in the liver become
    blocked, not allowing the liver to clear the harmful chemicals from your body.
    The symptoms of VOD are: abdominal pain, weight gain, swelling of the liver
    and poor liver function. Several times a week, a blood test will be done to
    check the function of your liver. Each day the team members will do a physical
    exam to check for any changes in your abdomen. A medication will be given to
    try to prevent this from happening.

    Kidneys: The kidneys remove waste from your body. The chemotherapy and
    other medications can cause damage to the kidneys. When this happens, the
    kidneys are not able to remove the waste and this waste builds up in your
    body. Blood work is done daily to check your kidney function. Other signs of
    kidney failure are a decrease in the amount of urine you pass and weight gain.
    The transplant team will closely monitor you, your blood work, your fluid intake
    and output, and your weight.




                                    -30-
                                  Side Effects of Transplant
                                                                  (continued from previous page)

   Lungs: Your lungs allow oxygen into your body and carbon dioxide to leave
   your body. Chemotherapy, radiation therapy and infections can cause your
   lungs to not work as well as they should. Each day your oxygen level in your
   blood will be monitored and your lungs assessed for any changes. It is impor-
   tant to exercise your lungs to keep them expanded and healthy. This can be
   done by sitting up in a chair, walking, and using a device called a “spirometer”.

   Heart: Your heart pumps oxygen rich blood to all of your organs. Some che-
   motherapy drugs can cause heart damage. Your heart function will be watched
   closely each day to make sure that problems are not happening.

Coping
 It is not uncommon during transplant that you may need some additional help
 dealing with all that you are experiencing. It is a normal reaction that you might
 feel scared, anxious and alone. The social worker and psychologist will keep in
 close contact with you and help you with these feelings. Being open and honest
 about your feelings is important. It is also important that you feel as though you
 have someone to talk to about these feelings. Please make sure that if you are
 starting to have difficulties coping, you let your nurse or transplant team know.

General Tips
  Time may seem to move slowly while you are waiting for your bone marrow
  to recover. Try to keep your mind and body as busy as possible and keep your
  attention on something positive. Stay focused on your end goal of getting home
  rather than this temporary stage.

     Don’t watch the clock. Don’t get hung up on “typical” time frames for
     bone marrow recovery. Every one is different.
     Schedule visits as much as possible with people you really want to see.
     Exercise: Go for walks as often as possible. Check with the transplant
     team as far as what types of exercises are permitted.
     Keep record of your blood counts to track your progress.
     Listen to relaxation or meditation tapes or music you enjoy.
     Write in a journal about what you are going to do when you get out of
     the hospital or complete treatment.
     Get to know other people on your floor. You may make some new
     friends and learn a lot in the process.
     Communicate your needs and desires to people who can help.




                                   -31-
First Visit
                                                               Going Home
Evaluation
                                Congratulations, you are going to be released from the
Insurance Approval              hospital! It is common for patients to have mixed feelings
                                on the day of discharge. You may be excited to get home
Consent Meeting
                                and back to a regular routine, yet nervous that you will
Mobilization                    not have 24 hour-a-day access to nurses and doctors. Rest
                                assured that the transplant team would not discharge you
Stem Cell Collection
                                from the hospital if you weren’t ready. The team is always
   Recovery                     available to you, day or night, by phone. The team will also
                                make plans to see you often through the clinic.
Start of Conditioning Therapy
                                Before you go home your nurse will make sure that you
Transplant                      have all the information you need and all your questions
   Recovery                     answered. There are very few restrictions once you are at
         Going
Going Home        Home          home. The most important thing to remember is to listen
                                to your body. It will take time for your body to recover
                                from the transplant. Don’t try to push yourself. As your
                                strength and nutrition improve, so will your energy.

Day 100 Evaluation              Below are some general guidelines for you once you are
                                home.

                                Follow Up Care
                                    An appointment will be set up for you to return to Avera
                                    Hematology and Transplant shortly after you have been
                                    released from the hospital. It is important for the transplant
                                    team to see you often to make sure that you are making
                                    good progress and not having any new
                                    problems.

                                Infection
                                    When your bone marrow has recovered from the
                                    transplant, your risk for infection decreases. Your immune
                                    system, however, will take several months to completely
                                    recover, and you will be more prone to pick up an
                                    infections or viruses. You do not need to wear a mask
                                    when you are at home or in the community. It will be
                                    important to use common sense when it comes to the pre-
                                    vention of infections such as:

                                       n     Avoid those who are sick, even those with colds
                                	      n		   Carefully prepare food
                                       n		   Frequently wash your hands with soap
                                       n		 Avoid home construction projects as molds
                                           and fungus are released in the air
                                	      n		 Avoid soil, lawn waste, or compost

                                	      n		 Avoid cat litter boxes and bird cages


                                                -32-
Shingles (also know as herpes zoster) is the virus that causes
chicken pox. Chicken pox usually occurs during childhood, but
the virus never leaves the body and rarely causes any problems.
Patients whose immune system becomes suppressed; however, can
allow the virus to become active. About 50% of patients who have
gone through transplant will have a re-activation of their virus.

Shingles can appear anywhere on the body. The virus follows the
path of a nerve and often presents as a strip of rash or pain from
the back around to the front of the chest or stomach on one side.
Pain or a burning feeling may appear several days before a rash is
seen. When the rash appears, it usually looks like raised, red, fluid-
filled blisters. Until the rash becomes dried and crusted, it can be
spread to others.

It is very important to call Avera Hematology and Transplant
immediately if you start to have burning or pain in an area, before
lesions are noticed. Medication will be ordered. Starting medication
early will decrease the seriousness of the infection and decrease
the amount of time you could spread the virus. Sometimes,
patients will have pain in that area for several months after the
infection has cleared up.




                   -33-
                                                             Going Home
                                                                   (continued from previous page)


Eating & Drinking
 Eating a well-balanced, high calorie, high
 protein diet is important in
 helping you recover from the
 transplant. Good nutrition will
 help your energy level so that
 you are able to exercise and
 regain your strength. There
 are no restrictions on what
 you eat. Good sources of
 protein are eggs, cheese, milk,
 nuts and peanut butter. Drinks
 high in calories and protein
 are Ensure, Sport Shakes,
 Carnation Instant Breakfast and
 other similar drinks. If you are
 having difficulty eating 3 meals
 a day because of nausea, or if
 you get full easily, try eating 5-6
 small meals a day. You may be
 able to get more calories in by
 “grazing” all day than by eating a
 larger meal at the traditional times.

 Drinking fluids is important to keep
 your body hydrated. You should try to
 drink two liters of fluid each day. You can do this by drinking water, juices and
 other liquids but also by eating ice cream, jello and soups that are sources of
 fluids. Gatorade or other similar drinks are excellent in helping to replace salts
 and minerals if you are having problems with diarrhea or vomiting.

 If you find that you are having difficulty getting enough calories in your diet and
 start to lose weight, the transplant dietician can meet with you anytime to give
 you suggestions.




                                    -34-
                                                                         Going Home
                                                                                (continued from previous page)


          Fertility & Sexual Activity
              It is normal for your sexual desire to decrease because of physical and psycholog-
              ical changes during chemotherapy, transplant and recovery. Physical changes can
              be vaginal dryness and fatigue. Psychological changes can include depression,
              anxiety, negative self-image, and problem relationships. Remember you are going
              through a very intense treatment, and your body is adjusting. Creating a relaxed
              and stress-free atmosphere may help. Medications, ointments and other treat-
              ments may help. Working on an honest, open communication with your partner
              may help with normalizing the changes in your relationship.

              The following are general guidelines regarding sexual activity.
          	         n		When your platelet count is greater that 50,000, you may resume sexual
                       activity.
          	         n		Oral sex is safe if you are the recipient. We strongly encourage you

          NOT
                       to perform oral sex on your partner for at least 6 weeks post transplant.
          	         n		Anal sex is absolutely discouraged.

          	         n		Wash your genital area carefully before and after sex to decrease your

                       chance for infection.
          	         n		Discuss birth control options and any future plans to have children with

                       your doctor before resuming sexual activity.
          	         n		If you are a female, you may have hormonal changes that affect natural

                       lubrication, so you may need a water-soluble lubricant like K-Y jelly.
          	         n		If you are female and still menstruating, do not use tampons until your

                       blood counts have returned to normal.




If you have any concerns at all, please feel free to visit with any member of the transplant team.

                                                -35-
                                                            Going Home
                                                                  (continued from previous page)

Catheter Line Care
 You may be discharged from the hospital before your catheter is removed.
 Arrangements will be made to have the catheter flushed and dressing changed.
 Watch your catheter for any signs of infection such as pain, redness, drainage, or
 fever. Notify the transplant team if you notice any of these symptoms.

Medications
  Before you are discharged from the hospital, your nurse or pharmacist will go
  over the medications that have been ordered for you. A schedule of what
  medications to take and when will be given to you.

Sun Exposure
 The chemotherapy and/or radiation and other drugs given during the transplant
 can increase the sensitivity of the skin to the effects of the sun. Protect your skin
 with sun protection factor (SPF) of 25 or above when outdoors even on overcast
 days. Wear protective clothing such as hats, sunglasses and long-sleeved shirts and
 pants.
                                   Smoking and Alcohol
                                     The chemotherapy and/or radiation can cause
                                     lung damage; therefore, it is important to
                                     avoid smoking and secondhand smoke.
                                     Alcohol can also be damaging to organs such
                                     as the liver. Ask your transplant doctor when
                                     you can resume drinking alcoholic beverages.

                                   Readmission and Setbacks
                                     The recovery after transplant can sometimes
                                     be a bumpy road. Most times there are small
                                     problems or infections that may require you
                                     to return to the hospital because they cannot
                                     be managed as an outpatient. Don’t become
                                     too discouraged because this is very common,
                                     and it is a part of your recovery.




                                   -36-
                                                               Going Home
                                                                     (continued from previous page)


When To Call Your Doctor
 Below are the guidelines for when
 you need to call the transplant
 doctor. It is always better to let the
 doctor know when symptoms are
 starting, so treatments can be started
 to prevent things from becoming
 worse. If you are uncertain if you
 should call, just call. It is better to
 find out if it is something that needs
 to be treated right away or can wait.
 Below are signs that should be called
 to your doctor right away.



                        n	   Temperature greater than 101 degrees or shaking chills
                        n	   Burning, pain, or blood when passing your urine
                        n	   Nose bleeds, bleeding gums, bloody or black stools,
                             or bruising
                        n	   New or increased shortness of breath, pain when
                             breathing, persistent or productive coughing, or chest
                             pain
                        n	   Vomiting or “throwing up” that does not get better:
                             vomiting of blood must always be reported immediately
                        n	   Uncontrolled body movements (seizures) or spells of
                             unconsciousness
                        n	   Pain or burning feeling on your skin or a rash or blisters
                             on your skin
                        n	   Pain, swelling or redness anywhere
                        n	   Yellowing of the skin or whites of the eyes




                                      -37-
                                                            Going Home
                                                                  (continued from previous page)

Anxiety and Depression
  Fears of disease recurrance, changes in your family and work roles, and loss of
  energy are some issues survivors experience after transplant that can lead to
  anxiety and depression. Methods such as deep breathing and meditation can be
  helpful in decreasing anxiety. The Bone Marrow Transplant Support Group or
  other support groups can be very helpful in supporting you during this time. If you
  experience depression or anxiety that prevents you from doing your usual activi-
  ties, you may require treatment with counseling and/or medications. The trans-
  plant doctor, nurse practitioner, social worker and nurses are there to
  support you and connect you with resources available to help you.

Fatigue
  Fatigue is a common side effect of transplant. It can range from mild to severe.
  Fatigue can be caused by a low red blood cell count or hemoglobin called,
  “anemia”. Anemia can be treated by blood transfusions or medications. It will
  take several months for your hemoglobin to improve to within normal range.
  During this time, you will need to manage your fatigue. Pay close attention to
  your energy levels and plan activities around the times you have the most energy.
  Below are some suggestions for dealing with fatigue.

Prioritize activities:                        Rest:
  Save your energy for those things             Take breaks if you are tired and nap
  that are most important to you.               if needed.

Eat right:                                    Be gentle to yourself:
  Eat foods high in calories and                Get involved with relaxation
  protein and rich in iron.                     therapy such as yoga, massages,
                                                hot baths or other things to
Don’t overdo:                                   pamper yourself.
  Remember to listen to your body,
  and don’t become over tired.                Know your limits:
                                                Don’t push yourself to exhaustion.

                                              Accept help:
                                                Let others help with meals, cleaning,
                                                or other activities that will help
                                                you save your energy and make
                                                your friend feel helpful.




                                    -1-
                                   -38-
                                    Bone Marrow Transplant
                                         Prairie Center
                                  1000 E 23rd Street, Suite 210
                                     Sioux Falls, SD 57105
                               605-322-3017 • Fax (605) 322-3047




Form 7389-117 PS (Rev. 3/10)

								
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