Transplantation & Recovery

Private Rooms
You will be placed in a private room, with a special air filtering device called a hepafilter, as soon as possible and will remain there as long as it is clinically necessary. Some patients may transfer to a semi-private room as they prepare for discharge. When you are hospitalized, a private room may not be needed and you will be placed in a semi-private room. A private room can be requested, though there is often a waiting list.

Visiting Hours
Visiting hours are from 10 a.m. to 10 p.m. every day. To give both patients and their families time to rest, these visiting hours are strictly adhered to, and overnight visitors are not allowed. Lodging arrangements are available and can be discussed with the BMT social worker. There are minimal limitations on the number of visitors in a private room, but you are asked to limit visitors in a semi-private room to two at one time. The nursing and medical staff reserve the right to change these visiting hours if patient care warrants it or the patient’s condition changes.

All visitors must wash their hands before entering your room. No visitor can use the patient’s bathroom; there are several public rest rooms close by. Any visitors who have colds, flu or other illnesses are asked not to visit until they are healthy (at least 48 hours after symptoms resolve).

Young children may visit if they are healthy and have not been exposed to contagious diseases (such as chicken pox, measles, colds or flu) within the previous 48 hours. It is recommended to take their temperature prior to visiting.

Telephone Service
There is no charge for the patient telephones. Long-distance calls must be made collect or billed to a credit card. Instructions for dialing outside the hospital are located on all patient phones. Standard telephone jacks are used in all rooms and personal cordless phones/answering machines/fax machines may be used.
There is a list of important telephone numbers in the Appendix of this handbook.

Patient Mail
While you are in the hospital, friends and relatives can write to you at the following address:
Your Name
University of Michigan Medical Center
Bone Marrow Transplant UNIT
1500 E. Medical Center Drive
Patient Unit 8 A
Ann Arbor, Michigan 48109

Plants/Flowers
As a transplant patient, you will be susceptible to infections until your white blood cell count returns to normal. During this time we encourage you not to receive any fresh-cut flowers or plants because they carry a large number of bacteria in their water and soil. Fresh fruit baskets also are not permitted. Artificial flowers, cards and balloons are welcome.

Television/VCR
All televisions are automatically turned on upon admission. VCRs are available in many rooms and there are several available to you on the unit. The unit has a videotape library from which you may select tapes and, of course, you may bring your own.

Meals
Your meals will be served to you in your room by dietary staff. Breakfast comes between 7:30 a.m. and 8 a.m. Lunch arrives between 12 p.m. and 12:30 p.m., and dinner is served between 5 p.m. and 5:30 p.m. There will be some restrictions in your diet while you are hospitalized in order to reduce the chance of infection. Food from home is permitted, however, please ask your nutritionist or nurse about the guidelines and restrictions.

Medical Center Smoking Policy
The University of Michigan Medical Center has adopted a no smoking policy for the entire Medical Center. Smoking is not allowed in any building or parking structure.

Chemotherapy
The chemotherapy you receive has been very carefully planned as part of a “protocol,” a precisely timed and organized approach to the treatment of your disease. The protocol outlines the medications you need, as well as blood tests, X-rays and other procedures. The protocol was written by a physician who is an expert in the field of cancer and bone marrow/blood stem cell transplantation. Before your admission you will be asked to sign an informed consent that reviews your protocol. This assures that you have been given important information, including the risks and benefits, about your treatment and the transplant process.

The chemotherapy is an important part of the protocol and will consist of one or more different types of medications, depending on the type of disease you have and the type of transplant you are receiving. The chemotherapy is given on a special schedule that is thought to be best for killing your cancer and yet minimally harming your body. You will be told exactly what days you will receive chemotherapy and how you should expect to feel. These medications will be given to you intravenously or in capsule form to be taken by mouth.

The doses of chemotherapy used in a transplant are much higher than those you may have received before. To eliminate cancer cells in your body it is necessary to use the highest doses possible. Because of this there is a possibility that you may experience more severe and different side effects than the ones you may have had in the past.

Chemotherapy may kill cells other than cancer cells. It can damage normal, fast-growing cells such as those in your mouth, throat, bowels, skin, hair and bone marrow. You may experience mouth or throat sores, nausea and vomiting, diarrhea, a rash or change in the color of your skin, and a loss of hair. It also will cause your blood counts to become very low.

You will be given medications to minimize the nausea and vomiting. Pain medications are available if you develop sores in your mouth or throat. Good oral hygiene is extremely important and will help limit the number of mouth or throat sores. A nurse will work with you to develop an oral hygiene care plan once you are admitted to the hospital. If you should develop diarrhea or constipation, we will use medications to correct the problem.

It is very likely that you will lose your hair during the treatment. If you lose your hair, you may wear a cap, scarf, wig or turban. Body heat is lost through the head, so you may feel colder after you lose your hair. The hair loss is usually temporary and should grow back within a few months.

Chemotherapy affects other organs of the body, such as the kidneys, liver, heart and lungs. Although severe side effects are infrequent, they can progress and cause complications such as veno-occlusive disease of the liver, kidney failure, heart palpitations and stiffening of the lungs. It is impossible to predict who will experience these side effects. You will be given information to explain each chemotherapeutic medication, how it works and the potential side effects.

Radiation
Radiation therapy (or irradiation therapy) is a part of some transplant conditioning regimens. There are several types of radiation: total body irradiation (TBI) given to the entire body, total marrow irradiation (TMI) given to the major bone marrow areas, total lymphoid irradiation (TLI) given to areas of major lymph node chains, or a “boost” of radiation directed at certain body parts. Radiation is given by a machine that sends rays of high energy into your body. The cells in your body are prevented from growing and multiplying when they receive these high- energy rays.

The type of radiation you may receive will be discussed with you by your radiation oncology team. You will meet with the radiation oncology team before your transplant admission. The team consists of the radiation doctor (who is in charge of your treatments), the radiation technologist (who administers the treatments), and the radiation nurse (who will monitor you for side effects).

Your radiation will be given to you as part of your conditioning regimen or, in the case of a “boost,” prior to conditioning. Radiation may be done as an outpatient or after your admission while you are in the hospital. You will go to the B1 level of the hospital once or twice a day for treatments. The special machines in this department require the temperature to be cold, therefore, you may want to wear a robe and bring an extra blanket. You should take off all metal (jewelry, safety pins, clasps, etc.) before your appointment.

The procedure generally takes 30 to 60 minutes. During this time you will be asked to remain in a certain position (standing or sitting). You will be alone in the treatment room, but the technologist can hear you and talk to you. You will hear the machine making a “humming” sound while the treatment is being given, but you will not feel anything.

Radiation affects cancer cells and normal cells. The side effects that may occur are due to its effects on the normal cells. Initially you may experience nausea, vomiting and diarrhea. You will be given medications to prevent and treat these side effects.

After you complete the treatments you may develop some other side effects, such as red, dry skin, which may develop into a suntan look; dry mouth, which occurs from the effect of the radiation on your salivary glands; “parotitis” or swelling of the parotid glands in front of your ears; and infertility, lung changes and cataracts (see Complications Section for more information). Your doctors and nurses will be monitoring you very closely for any of these side effects. Some of these are easily treated, while others may require long-term follow-up. If you have any questions regarding your treatments, please ask any member of your transplant or radiation team.

White Blood Cells: infection
White blood cells are needed to prevent infectious diseases caused by bacteria, viruses and fungi. There are different types of white blood cells; neutrophils are the predominant type. Neutrophils fight infection by rapidly increasing in number when an infection occurs, then surrounding and destroying the infection. Your “absolute neutrophil count” (ANC) is monitored closely after chemotherapy to give us an indication of your ability to fight infection. This count is the percentage, or part, of the total white blood cells in your body that are neutrophils.

After you receive “conditioning” therapy, your white blood cell count will decrease quickly and will remain low until the new cells begin to grow. During this time, you are at great risk for developing an infection, since you will not have white blood cells to fight bacteria, viruses or fungi. While your blood counts are low (ANC < 1,000) you will need to do the following to help avoid infection:

• bathe or shower daily with a special antimicrobial soap
• perform good mouth care with a soft toothbrush and a special solution after meals and at bedtime every day
• follow a low-bacteria diet (you will receive a written copy of this diet)
• avoid contact with people who have colds, flu, chicken pox and other contagious diseases (this may mean you need to limit visitors)
• eliminate plants, fresh flowers and fresh fruit from your room
• take all required medications
• wear a mask when you’re not in your room
• wash your hands well before mouth care, eating and after using the bathroom
• after each bowel movement, clean the rectal area gently but thoroughly

If you develop an infection during the time when your blood counts are low, you will be placed on antibiotics immediately. To help identify an early infection it is important to let your nurse or doctor know how you are feeling. Some of the symptoms of an infection are:

• fever (over 101 degrees Fahrenheit)
• skin tenderness
• chills/sweating
• a burning feeling when urinating
• rectal pain/tenderness
• a cough, sore throat or mouth pain
• loose bowels
• general feeling of tiredness

If any of these symptoms appear, notify your nurse or doctor immediately.
You may be given immunoglobulins through your IV. These are antibodies that attach and kill bacteria, fungi or viruses. Immunoglobulins are normally made by the body. However, after chemotherapy they are not made by the body in the amount you need. The transfusion lasts several hours and may be given as an outpatient after you are discharged.

Platelets: Bleeding
Platelets are the blood cells that help form clots and prevent bleeding. If there are not enough platelets in your body you may bleed or bruise more easily than usual. The decrease in your platelet count is caused by the chemotherapy. Platelets are made in the bone marrow and as it grows back your platelet count will begin to rise. It usually takes platelets a few weeks longer to grow back than the red and white blood cells. During this time, there are things you can do to prevent bleeding:

• take good care of your skin and lips; dryness may lead to bleeding
• use only an electric razor
• wear shoes/slippers at all times when you are out of bed
• avoid deep coughing or sneezing, or straining during bowel movements
• exercise by walking or riding a stationary bike. Avoid rough activity or exercises that may cause you to bump your head or injure other parts of your body.
• use only a soft toothbrush. Do not scrub your gums vigorously.

If your platelet count gets too low you will need platelet transfusions. Your platelet count will be checked daily, and you will be watched for signs of bleeding. Notify your doctor or nurse if you develop any of the following:

• bruises (black and blue marks)
• small red spots under your skin (petechiae)
• bleeding wounds
• blood in your urine or stool
• bleeding gums or nose
• blood in mucus that is coughed up

Red Blood Cells: Fatigue
Red blood cells carry oxygen throughout your body that is needed to supply your cells with energy. Chemotherapy affects the production of red blood cells. “Anemia” is the condition caused by low numbers of red blood cells. While you are anemic you may feel tired, dizzy, chilly or become short of breath. Be sure to tell your doctor or nurse if you have any of these problems. There are several things you can do to help yourself feel better while you are anemic:

• conserve your energy and take frequent naps between exercises
• move slowly; change positions slowly to avoid dizziness

After your transplant, it will take several weeks for your red blood cells to return to their normal levels. During this time you will require blood transfusions to maintain your red blood cell count.

Blood Products
After the stem cell product is infused, your body will require support through many transfusions of red blood cells and platelets. Blood products are provided by the American Red Cross and are coordinated by the blood bank at the University of Michigan Medical Center. If you have any questions regarding blood products, please call the blood bank coordinator for the Bone Marrow Transplant Program at (734) 936-8785. It is not possible for your family and friends to supply all your blood product needs.

Nutrition
Nutrition has a vital role in helping you achieve the best result from your medical treatment. Good nutrition helps prevent infections from developing and also helps you maintain a sense of well-being.

It is often difficult to stay well-nourished during chemotherapy. The dietitian will help you meet your nutrient requirements by offering nutrition supplements or by suggesting nutritious foods that you can tolerate. This is very important for your recovery after the transplant. If you are unable to eat, nutrition will be provided through an intravenous solution. This is called total parenteral nutrition.

Another aspect of your nutritional care is a low microbial diet. Its purpose is to decrease the risk of developing an infection by avoiding foods that may contain bacteria. The diet allows only well-cooked foods and restricts foods that may be high in bacteria, such as fresh fruits and vegetables that are unable to be peeled. The dietitian will instruct you on the guidelines and principles of the diet.

Mouth Care
This is an area where you can make a difference. Good oral hygiene will be important to you before, during and after your transplant. Mouth sores and infections can be painful and life-threatening.

The therapy you receive before your transplant affects the cells lining the inside of your mouth and throat. As a result, you may develop sores. If your mouth is not kept clean, an infection can occur that can quickly spread to other parts of your body. You will be given medications to help prevent infections if the sores develop. However, the most important part will be keeping your mouth clean. Your nurse will show you the way to brush your teeth and tongue and rinse your mouth. This must be done at least four times a day.

Hygiene
It is necessary for you to take a bath or shower every day. Your nurse will give you special soap to use that will kill bacteria on your skin. Always remember to wash your hands after using the bathroom, after touching any sores on your body, and before performing your mouth care.

Activity
There are many reasons why we stress exercise and physical activity. You will feel better mentally and physically, keep your skin, muscles, heart and lungs in shape, and sleep better at night if you follow a regular exercise program.

You will work with a physical therapist to develop your personalized exercise program based on your experience, habits, interests and physical condition. An exercise bicycle is available for use in your room and will be part of your daily activity. Walking as much as possible in the hallways is also recommended.

It is important for you to stay out of bed during the day as much as possible. Some diversional activities are a good way to keep you busy and decrease boredom, and include games, puzzles, reading, listening to music and other hobbies you may have. If you have any questions about an activity, ask your nurse, doctor or physical therapist.

Environment
Since you could be confined to your room for a long period of time, you may find it helpful to bring special items from home to the hospital. Calendars, pictures, your pillow and special blanket will make you feel more comfortable. Decorating your room with your own “stuff” can help boost your morale. If you have questions about what is permitted, ask your nurse.