Home > Cancer and Treatments > BMT Overview > Patient Guide
The transplant procedure is very intensive and will continue to affect you and your activities for some time. The following instructions are very important to follow. There is no special time when all restrictions and precautions can be stopped. This will vary for each patient. You will be evaluated for approximately 100 days after transplant by the transplant team. Until then, you should follow these guidelines.
In general, allogeneic transplant patients will be followed in the transplant clinic two to three times a
week for several months after transplant. Autologous transplant patients will be seen one to two times after
transplant before returning to the care of their referring physicians.
It is very important to return to the clinic for appointments after transplant. In the beginning, your
appointments will be quite frequent and become less often as you recover, regain your strength and are
less likely to experience severe complications. Please do not hesitate to contact the clinic or your
physician if you think you should be seen between scheduled appointments. Even after you return to your
physician in your community, we are available to you by phone or appointment.
The transplant team is always available to assist you with your discharge plan and care after transplant.
This section of the handbook will answer many of the questions you have. If you have any further questions
please feel free to call the transplant office at (734) 936-8785.
Precautions and Restrictions
Many of the precautions and restrictions are necessary in preventing infections and bleeding. Your bone
marrow needs time to mature before it is considered fully recovered. Until that time there are things you
need to watch for and prevent. These concerns will lessen over time, as your bone marrow and immune system
become fully functioning.
Your immune system may remain weakened for approximately one to two years following your transplant.
Although you can return to an active life, it is important for you to be slightly more cautious and
report any lingering illness to your transplant team. Generally, your referring physician will be able to
treat you without returning to the University. However, there are some times when you should be evaluated
by physicians trained in the special needs of transplant patients and you will return to the University of Michigan.
Masks
You should continue to wear a mask when you come to the hospital for your visits due to the continuing
construction around the hospital. A mask will not “protect” you from someone who is sick, but
rather acts as a reminder for you and those around you to be cautious. This is the reason you are asked
to avoid crowds and public places when you are first discharged. A mask is not necessary when you are at
home or out for a walk.
People
Avoid close contact with anyone who is ill. Avoid crowded areas, especially during cold and flu
season. Stay away from anyone exposed to communicable and/or childhood diseases; even if you have
already had them yourself, you are still at risk.
Pets/Animals
Household pets can remain in the home, with the exception of birds. You should avoid all contact
with birds and their droppings as they carry many infections. You should not come in contact with
any animal waste. Do not kiss or hug your animals and do not allow pets to sleep with you. Do not
come in close contact with outdoor or farm animals.
Plants/Flowers
These can remain in the home. Avoid gardening, mowing the lawn and other similar activities. Avoid handling fresh-cut flowers in vases, as the water can carry large amounts of bacteria.
Travel
Notify your doctor before you do any traveling. In general you should avoid swimming in lakes, public pools and sitting in hot tubs due to the possibility of exposure to excessive bacteria. Your skin will be very sensitive to the sun, therefore you should not plan a vacation that will require prolonged exposure to sunlight. You may be surprised at the time it takes to regain your pre-transplant stamina, and it may be wise not to plan an extended vacation until you see how your recovery progresses.
Miscellaneous
In general, it is important for you to avoid any kind of infection or items that might carry infections. Stay away from dusty, dirty, moldy things (construction areas, remodeling areas, vacuum cleaner bags, etc.); stagnant water (flower vases, vaporizers, de-humidifiers, etc.); and things that might irritate your lungs (aerosol spray cans, smoke-filled areas). If you question an activity, it is probably safer to avoid it until you can clarify it with your doctor.
Sexual Activity
The stress of illness, transplant and hospitalization may cause changes in sex drive. Sexual activity can be resumed, although some precautions may be needed when you are first discharged. Please discuss any concerns you have about intimacy at the time of discharge or at any time during your recovery from transplantation. Women should use a water-based lubricant to combat vaginal dryness (as a result of chemotherapy and radiation).
Physical Activity
It is essential to maintain the activity program outlined in the hospital by your physical therapist. There is a potential for developing infections in your lungs after the transplant, and remaining active helps keep your lungs clear. Activity outdoors, such as walking, is good for you. Remember to avoid construction areas or anywhere dirt or soil is being moved.
You may tire easily at first. This is normal after returning home. Try to build your endurance slowly; space out activities, do lighter tasks at first, schedule rest periods into your day’s activities. Avoid exhaustion and fatigue. Listen to your body. It could be up to a year before your full stamina returns.
Family Care/Support
How much care will be required at home after discharge from the hospital will vary with each person. If you receive an autologous transplant, it is likely you will need less care and for a shorter period of time than someone who has had an allogeneic transplant. Although it is unlikely you will need someone with you 24 hours a day, you will need someone for such things as meal preparation, shopping, driving you to clinic appointments and other activities of daily living. Occasionally it is necessary for your primary caretaker to take time off work to care for you. It is important that employers are aware of your family situation and that a leave from work may be necessary for a family member during your recovery time. Other family members and friends are often anxious to help. Now is the time to let them!
Children
It is important to notify your child’s school that you must be notified of communicable diseases like measles, chicken pox, etc. If your child is exposed to one of these illnesses, notify your doctor immediately. It is advisable that toddlers and preschool-age children not attend day care or preschool in order to decrease your chances of exposure to infection and disease.
You should notify your child’s physician that you will be having or have had a transplant. It is important that you not come in contact with any child who has received a live immunization (i.e. polio) for a minimum of eight weeks. If children are living in the home and vaccinations are necessary, inactivated vaccines are acceptable and may be administered.
Driving
You will not be able to drive for at least three months following your transplant (this period may be shorter for patients receiving their own marrow). Physical stamina is generally reduced and could lead to a decrease in the reflex time necessary for safe driving. Additionally, you may be taking medications that would make it unsafe to operate an automobile. It is important for you to consider this as you make plans for your follow-up care. It is essential that someone be available to drive you to your clinic appointments or to the hospital if you should need urgent admission.
Returning to Work or School
How soon you will be able to return to work or school depends on the kind of transplant you receive and how your recovery proceeds. For the first 100 days after your transplant you will not return to work or school (these are examples of “public places” referred to earlier). Patients receiving autologous transplants can expect to return to work on a part-time basis sometime after 100 days. Patients receiving an allogeneic transplant should not expect to return to work or school for at least six months. Although this is a general rule, it is important to remember that every patient is different and decisions are made by your doctor based on your physical condition and the work or school environment. The transplant social worker can assist you in returning to work or school by making any necessary arrangements with employers, school personnel or insurance companies. Your social worker can be reached through the transplant office.
Reimmunizations
Since your immune system is so intensely affected by the transplant, it may no longer “remember” its previous exposures to childhood vaccinations. Therefore, you will be reimmunized with several of your “baby shots” one to two years after transplant. This will be discussed with you at your one-year return visit, and arrangements can be made to have this done by your personal (or family) physician.
Diet
After a transplant, eating a well-balanced diet is important to help regain your strength and rebuild the normal tissues affected by chemotherapy. Loss of taste and appetite happens frequently following chemotherapy and radiation and it is common for patients to experience eating cycles after transplant. If you are having problems eating a diet adequate in calories and protein, talk with our dietitian.
You no longer need to follow the strict low-bacteria diet. However, until your immune system matures (approximately 100 days after transplant), it is necessary to follow the general guidelines listed below.
General guidelines:
- Use common sense in dealing with food.
- Check expiration dates on perishable items.
- Check for mold or insect contamination.
- Do not keep leftovers longer than two days.
- Discard any questionable items.
- Foods should be held at proper temperature.
- Cold foods such as milk and dairy products, should be kept in the refrigerator.
- Hot foods should be kept hot, not served at room temperature.
- Portion food into individual servings in a tightly-sealed container and cool in the refrigerator or freezer.
- Thaw frozen foods appropriately either in the refrigerator, in the microwave on defrost, or by running cold water continuously over meat until thawed.
- Do not thaw food at room temperature.
- Avoid any deli lunch meat or cheeses that are not pre-packaged.
- Avoid smorgasbords and salad bars.
- Discard leftovers after two days.
- Well water should be processed through a filter or tested by the health department.
- Fruits and vegetables must be washed thoroughly. Cut off any bruised areas.
- Avoid rare and medium-rare meats.
- Avoid deli salads not prepared in the home.
- Do not share eating or drinking utensils.
- Until your appetite returns to normal, a daily multi-vitamin/mineral supplement is recommended. It is not necessary to take large doses of vitamins and minerals, as this may be dangerous as well as expensive. Select a simple, inexpensive, daily multi-vitamin.
If you develop any difficulties eating, swallowing or tolerating food, notify your doctor
Hygiene
Routine daily hygiene will continue to be important at home. Remember, frequent handwashing is your best protection against infection. The following are specific guidelines for daily care that will help prevent infections and assist your body in its recovery. You should monitor these areas closely and notify your doctor if you notice any changes or have any concerns.
Mouth care:
Continue the mouth care regimen that you practiced in the hospital. Continue your mouth care after meals and at bedtime. If you notice any bleeding or if your platelet count is low, use a soft-bristle toothbrush (run hot water over your toothbrush). Notify your doctor if you notice any sores, tenderness or other changes in your mouth or throat. Also, remember to notify your doctor of any plans for dental work.
Skin care:
Continue good daily hygiene using a mild soap. You may notice your skin is drier than normal. If you use moisturizing lotions or creams, they should not contain alcohol or perfumes. Your skin will be extremely sensitive to the sun. You should always wear a hat and sunscreen with a minimal Sun Protective Factor (SPF) of 30. Remember to wear a sunscreen on any exposed area whenever you are outdoors (even if it’s not sunny).
Rectal care:
This area will continue to be very sensitive and will require special attention. Keep this area very clean; always cleanse after a bowel movement. Notify your doctor if you notice pain, tenderness or other changes. Do not use suppositories or enemas unless advised by your doctor.
Venous access devices:
Continue to care for your venous access device as you were instructed in the hospital. Change the dressing every day and observe the area around the catheter for redness, tenderness, drainage or any changes in appearance. Notify your doctor if any changes occur.
Cuts/bruises:
Cleanse all cuts and scratches carefully with a mild soap and water. Keep them covered with a bandage until healed and notify your doctor if the area becomes reddened, tender, sore, develops any drainage, or if you develop a fever. Increased bruising may indicate a decrease in your platelet count. If you notice bruises beginning to develop for no apparent reason, notify your doctor.
Outpatient Transfusions
Until your bone marrow is fully recovered, you may need to receive red blood cell and/or platelet transfusions on an outpatient basis. After receiving a transplant, you should receive only irradiated blood products.
Fever/chills or hives/itching are relatively common reactions to blood transfusions and may occur with the transfusion of any blood product. These symptoms usually occur during or shortly after trans-fusion. On rare occasions, these symptoms may be noted several hours after the transfusion.
You will be given post-transfusion instructions regarding the signs and symptoms of a transfusion reaction. Notify your doctor immediately if any of these signs or symptoms occur following your transfusion.
When to Notify Your Doctor
The following are general rules for notifying your doctor. If you are unsure of any symptoms or have concerns about something, call your doctor. The transplant team remains available to you after your discharge to answer any questions or assist you in any way. Please feel free to call them at (734) 936-8785.
Notify your doctor for any of the following:
- Temperature of 101 degrees Fahrenheit or greater
- New cough, shortness of breath
- Persistent headaches
- Blurred or double vision
- Bleeding (nosebleeds, blood in the stool or urine, vomiting blood, increased bruising or any other bleeding)
- Pain during urination or bowel movements
- Reddened, swollen or painful areas
- New developments of diarrhea, constipation or vomiting
- Difficulty swallowing or development of mouth sores
- Changes in your venous access device
- Fever/chill or hives/itching following a blood transfusion
Prescribed Medications
You probably will be discharged on several prescription medications. It is common to be discharged with supplements, such as potassium or magnesium, that you will need for several days to a few weeks. Medications for nausea and vomiting may be needed until your appetite returns and you resume regular eating habits. You may also need to take oral antibiotics to prevent or treat infection. If you receive an allogeneic transplant, you will take an immunosuppressive (steroids, Tacrolimus, Cyclosporin) for six months, or longer if you develop graft versus host disease.
It is advisable to use only one pharmacy at home. They will have your complete records, can advise you on your prescriptions and will communicate with your doctor. For awhile you may ask your pharmacy to deliver your medications or have a member of your family pick them up. Pharmacies (like hospitals) often are places where you may be exposed to infections.
“Over-the-Counter” Medications
Colds/Flu:
You are susceptible to colds and flu for several months after discharge. At the first sign of the illness you should call your doctor. If he or she suggests that you take an over-the-counter medication, you should select a product with no aspirin. Aspirin can alter platelet function, which may cause bleeding. Some products also contain acetaminophen that can mask a fever and should also be avoided unless discussed first with your doctor or clinic nurse.
Be sure to read the label of all your medications or ask your pharmacist or doctor to suggest a product that does not contain aspirin. Products containing antihistamines and/or nasal decongestants are best to use for colds or flu. Do not use non-sedating antihistamines (Seldane, Hismanal) without talking to your physician. Several medications taken after transplant may interact with these.
You should avoid decongestant nasal sprays. These can be very irritating to the nasal tissues. Nasal sprays of this type are very short-acting and can do more harm than good.
A persistent cold or flu could be a sign that you may have a sinus or lung infection that requires an antibiotic. If your symptoms persist for more than four days, contact your doctor promptly. If you are feeling ill, remember to take your temperature frequently (several times a day and whenever you feel warm). Notify your doctor immediately if your temperature is above 101 degrees Fahrenheit.
Pain:
Minor aches and pains are normal after discharge. If your pain becomes worse or persists you should discuss it with your doctor. Pain may be a sign of infection.
If you need a pain medication, choose one that does not contain aspirin or aspirin-like products. Because aspirin and aspirin-like products can alter your platelet function, you may be at a higher risk for bleeding.
You may take acetaminophen (Tylenol) for minor aches and pains. Acetaminophen can mask a fever and should be avoided unless discussed with your doctor or clinic nurse. Many cold and flu products contain acetaminophen. Read your labels carefully.
Stomach Distress:
Chemotherapy can cause damage to the mucosa of the mouth, esophagus, stomach and intestines that may take a few days to several weeks to completely heal. It is common for the nausea and vomiting to persist for some time after the transplant. You may need medication at home for nausea. Over-the-counter antacids can be quite effective in relieving the discomfort, though they should be used cautiously, especially if you are taking other oral medications. Because antacids “coat the stomach” they can prevent some medications from being absorbed. Therefore, they should be taken at least two hours before or after other medications. If you have specific questions about drug interactions with antacids and any medication you are taking, discuss them with your pharmacist, doctor or nurse.
Antacids that contain aluminum may cause constipation. If you are having problems with diarrhea, this would be a good product to choose because it may help counteract the diarrhea.
Antacids that contain calcium or a combination of aluminum and magnesium may be less likely to cause either diarrhea or constipation. Examples of these are Maalox, Mylanta or Tums.
Milk of magnesia is an antacid that contains magnesium. It may cause diarrhea and should be avoided.
Liquid antacids usually are more effective and should be used if possible.
Diarrhea:
Diarrhea is often a problem during hospitalization and may not resolve totally until you return home and resume your normal activities. There are products available over the counter that you may use at home that are effective for mild diarrhea.
Diarrhea of new onset or persistent diarrhea can be a sign of an infection, graft versus host disease or other problems. If you have severe diarrhea or diarrhea that does not subside, you should contact your doctor.
Constipation:
Constipation is unusual after transplant but may occur in some patients. If it does occur it may be managed by increasing your physical activity or altering your food and fluid intake. If medication is recommended by your doctor, use a stool softener such as docusate (Colace or Surfak). Stool softeners do not act immediately and may take as long as three days to work. Drinking lots of fluids will help the stool softener work. Do not use rectal suppositories or enemas because they can cause rectal irritation and bleeding. Laxatives (Ex-Lax, Correctal, Dulcolax, Feen-a-mint) work by stimulating movement in the intestine. Products like these should be avoided because they are very short-acting and may be dangerous.
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