WHAT YOU NEED TO KNOW:

What is graft versus host disease (GVHD)? GVHD can happen after you have a bone marrow or stem cell transplant. In GVHD, cells transplanted from a donor (the graft) attack your body (the host). This most commonly causes damage to your skin, mouth, liver, and eyes. Chronic GVHD usually happens 100 days or more after your transplant, but may happen sooner. It may begin as acute GVHD and become chronic.

What increases my risk for GVHD?

• Older age of you or the donor
  
  
• A mismatch of tissues and cells between you and the donor
  
  
• A transplant with peripheral stem cells
  
  
• A transplant from a donor who is not related to you
  
  
• A transplant from a female donor who has had multiple pregnancies
  
  
• A history of acute GVHD

What are the signs and symptoms of chronic GVHD? Symptoms may be mild to severe. You may have any of the following:

• A skin rash, changes in skin color, or tight or rough skin
  
  
• Skin that peels and falls off
  
  
• Dry eyes or vision changes
  
  
• Fatigue, weakness, or joint pain or stiffness
  
  
• Wheezing, coughing, or trouble breathing
  
  
• Diarrhea, weight loss, or loss of appetite
  
  
• Mouth sores, dry mouth, or difficulty swallowing
  
  
• Hair loss
  
  
• Vaginal dryness

How is GVHD diagnosed and treated? Your healthcare provider will examine you. Tell him about your symptoms. You may need blood tests to check for infection, liver function, and get information about your overall health. Biopsies may be taken from your skin, liver, intestines, or mouth. A biopsy is a procedure to remove a sample of tissue. You will need medicines to stop donor cells from attacking your body. Medicines may be given as a pill or an injection through an IV. You may also need antibiotics to prevent infection and medicines to manage your symptoms.

How do I care for my skin?

• Apply cream or lotion as directed. Use a moisturizing lotion without a scent or apply prescription cream as directed.
  
  
• Wear loose-fitting clothing. This will help prevent rubbing against your skin.
  
  
• Do not scratch your skin. This can increase your risk for infection.
  
  
• Protect your skin from sunlight. Sunlight can make symptoms of GVHD worse. Wear sunscreen that is at least SPF 30. Reapply sunscreen every 1 to 2 hours while you are outside. Also wear a hat, a long-sleeved shirt, and pants when you are in the sun. Try to stay in the shade as much as possible.
  
  
• Care for open areas of skin as directed. Carefully wash the wound with soap and water. Dry the area and put on new, clean bandages as directed. Change your bandages when they get wet or dirty.

How do I manage chronic diarrhea?

• Drink plenty of liquids. Liquids will help replace body fluids lost through diarrhea. You may also need to drink an oral rehydration solution (ORS). An ORS has the right amounts of sugar, salt, and minerals in water to replace body fluids. ORS can be found at most grocery stores or pharmacies. Ask how much liquid to drink each day and which liquids are best for you.
  
  
• Do not drink or eat foods that may make your symptoms worse. These include milk and dairy products, greasy and fatty foods, spicy foods, caffeine, and alcohol. Keep a food diary to see if your symptoms are caused by certain foods. Bring this to your follow-up visits.
  
  
• Eat foods that may help your symptoms. These include bananas, boiled potatoes, cooked carrots, cooked chicken, plain rice, and toast.
  
  
• Care for your rectal area. Clean this area with warm water and soap after you have a bowel movement. You can also use soft cleansing wipes. Ask your healthcare provider about medicated wipes that may decrease discomfort.

How do I care for my eyes?

• Use artificial tears, gels, and lubricating ointments as directed. They are available without a doctor's order. These products can replace tears and help add moisture to your eyes. Ask your healthcare provider how often to use these products. Also ask where to buy them.
  
  
• Apply a warm compress to your eyelids as directed. Use a soft washcloth soaked in warm water. Leave the compress on your eyelids for 5 minutes. Gently massage your eyelids after you remove the compress. These actions may help open your tear glands. Your tear glands can make oil that will help keep tears and moisture on the surface of your eyes.
  
  
• Wear glasses or sunglasses that cover the sides of your eyes and fit close to your face. These will protect your eyes from dry air. They may also help keep moisture in your eyes. Wear sunglasses when you are outside. Sunglasses will protect your eyes from sun damage.

How do I care for my mouth?

• Use a mouth rinse with pain medicine before you eat. This may make it easier to eat and drink.
  
  
• Perform oral care as directed. Oral care will help decrease your risk for infection. Use a soft toothbrush and mouthwash. Ask your healthcare provider if you should use a certain type of toothpaste or mouthwash.
  
  
• Visit the dentist every 6 months. A dentist can check for problems in your mouth or make changes to your treatment plan.
  
  
• Do not eat spicy or acidic foods. This may increase pain in your mouth.
  
  
• Do not drink beverages with alcohol or caffeine. These drinks can make your dry mouth worse.

How do I prevent infection?

• Wash your hands often. Use soap and water or a germ-killing gel. Wash your hands after you use the bathroom, change a diaper, and sneeze. Wash your hands before you touch your face, and prepare or eat food.
  
  
• Keep your home clean. Wipe down bathroom and kitchen surfaces with cleaners that contain bleach. Clean floors and carpets regularly.
  
  
• Use safe food practices. Cook meat and vegetables thoroughly. Store extra food and leftovers in the refrigerator within 2 hours after preparation.
  
  
• Do not spend time with people who are sick. This includes people who have a cold, flu, infection, or rash. You should stay out of crowded places, such as malls and elevators.
  
  
• Be careful with pets and animals. Do not change your cat's litter box. Play gently with cats. Scratches from cats or other animals can get infected. Stay away from puppies, kittens, and young animals. They can spread disease and cause you to get an infection.
  
  
• Wear a mask as directed. You may need to wear a mask when you leave your house or when people visit.
  
  
• Talk to your healthcare provider about vaccines. Vaccines, such as the flu and pneumonia vaccine, can help prevent infections.

What do I need to know about nutrition? A registered dietitian can help you find an eating plan that is right for you. You may need a special diet.

What do I need to know about physical therapy? Go to physical therapy as directed. A physical therapist teaches you exercises to help improve movement and strength, and to decrease pain. You may need physical therapy if you have tight skin over your joints. You may also need physical therapy if you have joint pain or stiffness.

Call 911 for any of the following:

• You have trouble breathing.
  
  

When should I seek immediate care?

• Your heart is beating faster than usual.
  
  
• You feel weak, dizzy, or faint.
  
  
• Your abdominal pain suddenly gets worse.
  
  
• You urinate very little or stop urinating.
  
  
• You have blood in your urine or bowel movements.
  
  
• You vomit blood.

When should I contact my healthcare provider?

• You have a fever greater than 100.4°F (38°C) or chills.
  
  
• Your symptoms do not get better with treatment.
  
  
• Your skin is red, swollen, or draining pus.
  
  
• You have nausea or vomiting.
  
  
• You cannot take your medicine.
  
  
• You have sores, bumps, or a rash on your genitals.
  
  
• You have eye pain or changes in your vision.
  
  
• You have questions or concerns about your condition or care.

CARE AGREEMENT:

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment.