Taking an active role in your care will be an important part of your stem cell/bone marrow transplantation. There are many self care activities you can do and will be expected to do. During your transplant, the nurses, the transplant team, your caregiver, and others will assist and direct you in performing many self care activities.

It is likely that during your transplant, you will feel fatigued and weak at times and may not want to perform many of your self care activities. You may feel that it is easier to sleep and let others do things for you, however, you must keep in mind that inactivity can lead to increased weakness, pneumonia, and even bed sores. The more involved and active you become in your own care, the less "sick" you will feel and the easier it will be for you to move toward recovery and going home.

Our goal during your transplant is to maintain as much "normalcy" as possible and help you stay as healthy as possible. The following is a list of self care activities you will be expected to adhere to during your transplant. Nurses and others will teach, assist, and direct you in learning and performing these activities.

Daily Activities:

- Take a shower using special antibacterial soap every day.
- Perform special mouth care regimen four times per day (after each meal and at bedtime).
- Use an incentive spirometer to perform breathing exercises four times per day, 10 breaths each time.
- Exercise with a physical therapist once every day and two times by yourself for a total of three times per day.
- Cleanse yourself with a special betadine soap after each toileting.
- Wash your hands with soap and water after each toileting.
- Weigh yourself each morning and inform your nurse of your weight.
- Order you meals daily.
- Eat meals sitting in chair rather than in bed.
- Record and/or inform your nurse of all food and liquid intake.
- Record and/or inform your nurse of the amount of urine and stool output.
- Take all of your medications as instructed.
- Take or allow your nurse to take and record your temperature every four hours.
- Wear your mask in public areas such as the hospital corridors, the doctor's waiting room, and hotel lobby.
- Travel to and from the outpatient clinic if and when you are staying at the local hotel.
- Inform your doctor and/or nurse of any problems or concerns at any and all times day or night whether you are in the hospital outpatient clinic or hotel.

Especially important problems to report immediately include:

-fever of over 100.5F
-difficulty or inability to take medication
-ineffectiveness of any medication
-persistent diarrhea or vomiting
-bleeding of any kind
-pain or drainage from or near your catheter
-difficulty breathing
-severe headache, dizziness, or blurred vision

During your stay in the hospital and/or outpatient clinic, the nurse will assist you and assess your ability to perform these activities regularly. If you are staying at the local hotel, you and your caregiver will be fully responsible for the activities that take place in the evening and night hours. At the hotel, you will have immediate access to a nurse and doctor by telephone at all times and you may have nursing visits at night if your require IV medication or fluids.

The self care plan will be individualized to your special needs and can and will be changed as your needs change.

Self Care/Daily Routines During Your Transplant
While in the hospital, the specialized medical, nursing, and selfcare you need is very important. Discussed below are care regimens and precautions which are vital to your recovery and help describe the everyday routine you can expect while you are hospitalized for your transplant.

Weight and Vital Signs
You will be weighed daily. Should fluid retention occur you may be weighed twice daily, once in the morning, and once in the evening. Your blood pressure, temperature, pulse, and respiration (vital signs) will be checked every four hours around the clock and more frequently should your temperature and condition be unstable. You will be awakened by your nurse for this.

Infectious Precautions
During your stay, we need to protect you from germs to reduce the risk of infection when your ANC, White Cell count (infection fighting cells), is low. When you are admitted to the hospital you may be placed in a semi-private room. Depending on your type of disease and transplant, at some point during your hospitalization before your neutrophil, White Blood Cell count (also known as ANC falls below 1,000/mm3 you may be moved into a private room.

When your White Cell count (in fection fighting cells) does fall below 1,000/mm3, infectious precautions will begin. During this phase, all family members, visitors, and staff must wash their hands thoroughly with an antibacterial soap before entering your room. For bone marrow recipients, isolation apparel including mask and gloves must also be donned by individuals entering the room. The door will remain closed at all times. However, there is a small window in the door so the nursing staff can always see and check on you. For peripheral stem cell recipients, only handwashing, as described above, is required. There will be a sign on your door reminding all individuals that you are on infectious precautions and that this practice must be followed. Having people follow this preparation protects you from germs that they may be carrying on their clothes, skin, and breathing into the room. If for any reason you must go outside your room (e.g. for a test) then you will need to wear either full or partial protective clothing.

Personal items from home or received as gifts may be brought into the room. They will either need to be cleaned in a washing machine, wiped down with rubbing alcohol, or removed from a sealed wrapper. Note, however, that no fresh flowers, plants, or fruits are allowed in the patient's room as they may harbor bacteria which can be harmful to you. Silk or plastic flowers and balloons are permitted. Please contact your nurse or clinical specialist regarding what items you may bring in and any special preparation for them.

Personal Hygiene
It is extremely important to keep yourself clean. It will be necessary for you to bathe once a day with a special antibacterial soap and water. You will wash from neck to toe, starting with your neck followed by your arms and torso. The lower areas of your body, legs and feet will be washed last. It is important to use friction when washing and to pay special attention to your underarms, breast folds, and groin areas. These are moist areas which can grow and harbor germs. At best, the lather from the soap should be allowed to stay on these areas for a minute before being rinsed. After each bowel movement or urination you will have to wash your buttocks and/or perineal area with betadine and pat dry. Handwashing is an important part of preventing the spread of germs. You must wash your hands thoroughly with the antibacterial soap before and after eating, and after each bowel movement and urination. You may shampoo your scalp once a day with regular shampoo.

Mouth Care
Throughout your stay, your mouth should be kept as clean as possible. Good oral hygiene will help prevent infection and lessen the severity of mouth sores which can occur as a result of radiation and chemotherapy.

On the first day of chemotherapy you will begin a special mouth care regimen which will be done four times a day, once after each meal and once before bedtime. Even if you do not eat, this care must be done. If your mouth sores become severe enough, we may increase the frequency of cleansing to every two or four hours. If your mouth becomes too painful to clean, we can give you pain medication prior. This makes the regimen much more tolerable so it is important for you to let us know if you need it.

You will be given disposable foam sticks to swab your mouth clean. When your platelet count is low your gums are more likely to bleed, hence, you cannot use a regular toothbrush or dental floss. The mouth care regimen will consist of swabbing and rinsing your mouth with sodium bicarbonate-water. This will be followed by using an oral antifungal solution. While your counts are low, oral infections may occur. These agents prevent infections and will help to soothe your mouth. Mycostatin is an oral liquid which you will first swab with, then swish and swallow. For those who find the Mycostatin distasteful, Mycelex lozenges can be prescribed instead. These should not be chewed, but rather allowed to dissolve in the mouth in order for them to be effective. A germ killing solution called Peridex may also be prescribed. After you have taken any of these agents you cannot eat or drink for 20 to 60 minutes. This maximizes the effectiveness of these medications. Commercial mouthwashes and toothpaste are not to be used as these will be extremely irritating to your mouth and throat.

You should also avoid licking your lips excessively because doing so can cause chapped and cracked lips, which may lead to bleeding while your platelets are low. The nursing staff will provide you with a lubricant to apply as needed to keep your lips moist. If you prefer, you may bring in Chap-stick, Blistex, or Carmex from home.

Central Venous Catheter (CVC) Care

A central venous cather will be inserted prior to coming into the hospital for your transplant. During your transplant hospitalization, the dressing change will continue on a Monday-Wednesday-Friday schedule, unless the dressing becomes loose, wet, or drainage is evident, at which time the dressing must promptly be changed.

Bleeding Precautions
While your platelet count is low, you will have an increased risk or tendency to bleed, therefore, you will need to take special precautions:

- Use only an electric (battery-operated) razor when shaving.
- Use safety measures to prevent falls or accidents, such as wearing shoes or slippers with rubber soles when ambulating in the room.
- Do not use nail clippers and/or scissors for fingernails or toenails. Only an emery board may be used.
- Avoid scratching your skin, especially if dryness occurs. Apply body lotion if your skin becomes dry (except while undergoing radiation treatments).
- Avoid blowing your nose excessively. It is important that when you do blow your nose, you do so gently.
- Use foam sticks when performing mouth care.
In addition, your nurse will be monitoring you closely for signs and symptoms of bleeding. It will be important to save all your urine and stool so that they may be checked by your nurse for the presence of blood.

Nutrition
Upon your admission to the hospital, a consultation with a nutritionist will be held to discuss any nutrition concerns you may have. This individual will help you plan the appropriate diet to meet your personal needs and preferences.

This nutritionist will be available to you throughout your hospitalization should your concerns and/or dietary needs change.

Initially, when you enter the hospital you will be allowed to eat a regular diet. When your Absolute Neutrophil Count (ANC) falls below 1,000/mm3, approximately five to seven days after the start of chemotherapy, you will be placed on a neutropenic diet. During this time, there are particular foods which transplant patients must avoid. These include all raw, fresh fruits, and vegetables (including any fresh fruit or vegetable garnishes), all herbs and spices added after cooking (including pepper), shellfish, and unpasteurized dairy products (i.e. yogurt). For those times when you do feel like eating, a small supply of packaged foods may be allowed in the room. However, these food items are not to remain in the room for more than several days. No one except you, the patient, is permitted to eat inside the room.

As a result of the chemotherapy and radiotherapy, your appetite will decrease and the mouth sores which may develop will make it uncomfortable to eat. Total Parenteral Nutrition (TPN) may be prescribed in the allogeneic bone marrow transplant patient. TPN is a yellow-colored intravenous solution of carbohydrates (sugar) and amino acids (protein) to which vitamins, minerals and other nutrients will be added. A white-colored fat solution called lipids may also be given to you. These are essential nutrients that provide a concentrated source of calories. These solutions will be closely monitored to insure that you maintain good nutrition. As your appetite increases, the TPN will be tapered down so that parenteral (IV) fluids and oral intake together will meet your nutritional needs.

Here are some suggestions to help your appetite:

- Eat small, frequent meals.
- Avoid hot or spicy foods. Select foods which are normally served cold or at room temperature.
- Avoid liquids at meal times and take them 30 to 60 minutes before eating. This will help decrease nausea.
- Keep snacks such as hard candies and packaged cookies available at your bedside.
- Take advantage and eat at those times when you are feeling well.
- Do not be afraid to experiment with food because your tastes will change over time from the medications you'll receive.
- Increased activity can help stimulate your appetite.
- Try soft foods such as ice cream and ices, mashed potatoes, etc.
- Eat slowly so that only small amounts of food enter your stomach at one time.
- Chew your food well so you can digest it more easily.

Activity
During your hospitalization it is important that you keep physically active. This contributes to keeping your body healthy. We encourage you to keep physically active by walking in your room and sitting in the chair as much as possible. We want you to avoid lying in bed for prolonged periods of time because it can affect your recovery and transition back to normal daily activities. Upon your admission to the hospital, a consultation with a physical therapist will be held to help you plan an appropriate activity regimen. Stationary cycles and arm/leg weights may be incorporated into your activity schedule. Thereafter, your therapist will visit every day and guide and/or assist you through your specially tailored exercise program.

Rest and Relaxation Before you are admitted to the hospital keep in mind what hobbies or personal interests you have to occupy your time during hospitalization. Some suggestions include books, magazines, puzzles, cards, and arts and crafts. You may want to bring in some video tapes as your room may have a VCR. A "boom" box with a radio, cassette, and CD deck may also be available to you.

As mentioned before, you are permitted to bring in items from home. In fact, during hospitalization you are encouraged to make your room and stay as much like a home environment as possible. This includes wearing your own clothes (sweat pants, shorts, T-shirts, and PJ's are suggested), blanket/comforter, pillow, photographs, posters, etc. However, please check with your nurse for approval and any special cleansing procedures.

Visitors
Visitors who are unfamiliar with the handwashing and infectious precaution, and/or who wish to bring something into the room must first check with your nurse. If your family and friends have been ill or exposed to someone with a cold or the flu, they should not visit as they could transmit their illness to you. For transplant patients, visitors are permitted as long as they are free of infectious diseases, have not had contact in the past 21 days with someone who has chicken pox, and are able to perform the handwashing and gowning procedure. Visitors are not allowed to sit on your bed, or use your bathroom. It is not advisable to have small children visit.

Transfusions
As stated before, your complete blood count which includes White Cells, Red Cells and platelets will be below normal as a result of the conditioning chemotherapy-radiotherapy regimen. Therefore, you will need transfusions of red blood cells and platelets until your counts return to normal. Approximately 30 minutes before your transfusions you will be premedicated with medications to decrease possible side effects, such as fever and chills. In addition, all the blood and blood products you receive will be exposed to radiation (irradiated) before receiving them. These blood products will be obtained through our own hospital's blood bank when they are needed. Your family members and/or friends will be asked to donate whole blood and/or platelets. The doctor and nurses will further discuss blood transfusions when necessary.