Health Maintenance
DIET
Diet recommendations will depend on your child’s disease process and nutritional status. Prednisone may increase your child’s appetite (and thus your child’s weight). We will follow weight gain or loss in clinic. A nutritionist will be available for recommendations and concerns. Older children may want to drink plenty of water or fluid every day to keep their kidneys healthy. Remember, several of the medicines your child takes are potentially toxic to the kidneys, which may be made worse if he does not drink enough.
Exercise
Daily exercise is strongly recommended (for the whole family and staff!!) Your child may participate in any form of non-contact sport or activity. Walking is excellent form of exercise. Recent studies suggest that a leisurely walk once a day may offer health benefits comparable to those derived from more intense exercise. Exercise helps to maintain weight, reduce loss of calcium from the bones, and improve the proportion of muscle to body fat stores. In addition, walking may lower blood pressure and help reduce stress.
Skin Care
Skin problems (usually minor) are very common in transplant patients.
Oily skin or acne: Your child (especially in pubertal or post-pubertal) may develop acne on the face, chest, shoulders, or back mostly due to prednisone. Primary measures used the control the acne are aimed at removing the excess oil and preventing formation of "white heads" or "black heads". Wash the areas of acne thoroughly three times a day, scrubbing gently with a soapy washcloth to remove the oil, dead skin, and bacteria. Neutrogena soap works well, but any drying soap is fine. Rinse soap off of the skin completely to leave pores open and clean. Use a clean washcloth each time. Shampoo hair and scalp frequently and keep the hair away from areas of acne. Benzoyl peroxide cream or lotion (5-10%), can be purchased over the counter and is helpful in drying acne. When acne is present, it is best not to use cosmetics but, if you must, use them sparingly. If the skin becomes dry, consider reducing the frequency of washing and application of medication. Remember that drying the skin is an objective of the treatment. Do not apply skin lotions to treat dry skin. If acne persists, we will refer to an excellent pediatric dermatologist who works closely with us. Check with the transplant nurse or doctor.
Dry Skin: Use a mild soap (Dove) for bathing and apply body lotion after bathing if your child has problems with dry skin without acne. Keri lotion or Moisturel are good over the counter lotions. Lac-Hydrin (which requires a prescription) can be ordered if severe dry skin persists.
Sun Exposure
Prednisone and Septra will make your skin more sensitive to the sun. Your child will probably burn and tan easier, faster, and to a greater degree than he did before transplant. Limit sun exposure and use sunscreen liberally! Transplant patients have an increased chance of developing skin and lip cancers. These cancers are TEN TIMES MORE COMMON IN TRANSPLANT PATIENTS than in the general population and are more likely if there is a history of sunburn. Ultraviolet rays are present even on cloudy days. We advise you to always protect your child’s skin by using sunscreen on any exposed skin and to avoid midday sun since ultraviolet rays are stronger at that time.
Skin Lesions
Warts may be particularly difficult to treat after transplant since they are caused by a viral infection. Moles that are changing, raised skins lesions, or sores that do not heal should be pointed out to the transplant nurse or doctor. We will refer you to a dermatologist for these problems.
Cuts and Scratches
Prednisone can cause the skin to become thin, making it tear, scratch, or bruise easily. Keep the skin clean so such areas do not become infected. Keep minor cuts and scratches clean and dry by washing with soap and water. Cleanse with hydrogen peroxide if desired. For large cuts, dog bites, or cut/skin tears that appear infected (redness, swelling, pus, increased tenderness), contact the transplant nurse. Systemic antibiotic therapy may be indicated.
Hair Care
Prednisone and cyclosporine will probably affect the condition of your child’s hair. Older children may want to avoid tints, dyes, bleaches and permanent wave solutions because they may make your child’s hair break. We recommend that your child wait until their prednisone dose is less than 20 mg/day before they have a permanent or other hair treatment.
Increased Hair Growth
This problem affects all children after transplant and may be rather annoying and distressing. It is a side effect of cyclosporine. Hair growth increases on both the face and body. Hair can be removed with hair remover cream (we recommend a special brand). We also have a special protocol to remove the hair. Be sure to test a skin area according to the directions on the bottle. This cream can cause severe irritation to the eyes and mucous membranes (even to your lips) so apply it carefully.
Instructions for Hair Removal
We recommend using NAIR GENTLER FORMULA CREAM HAIR REMOVER WITH BABY OIL FOR FACE TOO. Apply Nair to the affected area. Leave on for 5 minutes ONLY!! Remove with a wet wash cloth, rub with the hair and press firmly. Wash skin with soap and water after removing hair. Dry the area and then apply Hydrocortisone ointment 0.5% to the area. You only need to apply the Hydrocortisone once after removing the hair. It is very IMPORTANT to only leave Nair on the skin for 5 minutes, or severe burn may develop.
Electric razor can be very effective if you choose to shave. The blade should be changed according to the instructions.
Smoke
Your child should stay away from all forms of tobacco smoke. Smoke causes inflammation within the lungs whether primary or second-hand, making it easier to develop a lung infection. Your child should stay away from smoke filled areas as much as possible. If family members smoke, they should smoke outside of the home and the family car. We will provide personal counseling to adolescents about their own smoking choices.
Pets
If you have a pet, it is important that it sees a veterinarian on a regular basis. Your child should wash his hands after touching or playing with your pet. The child should never change kitty litter because of the potential infectious agent toxoplasmosis. We recommend against birds as pets because of the potential air borne infectious agents in their stool. Some reptiles carry salmonella in their stool, therefore if your child handles such creatures they need to wash their hands thoroughly afterwards.
Vaccinations
Your child cannot have live vaccines which includes measles (MMR), oral polio vaccine, and chicken pox vaccine We recommend annual influenza shots for patients and family members. Your child should also have receive a pneumovax shot (every 5 years) and a tetanus shot every ten years.
Dental
Dental visits are recommended every six months. Wait until six months after your transplant to schedule the first visit. Your child will require prophylactic antibiotic therapy before any dental cleaning or work. Because the mouth is a warm, moist area where bacteria exist in high numbers and these bacteria enter the blood stream transiently during dental work. Please inform your dentist that your child will require antibiotic’s according to the American Heart Association "Stand and Regimen in Patients at Risk" (usually amoxicillin or erythromycin).
Good mouth care, including brushing teeth, tongue, palate (to help avoid yeast infections), and flossing (to prevent tender, swollen gums) should be done regularly. Overgrowth of the gums is an important side-effect of Cyclosporine and seems to be exacerbated by poor oral hygiene. Oral surgery is occasionally required. A mixture of hydrogen peroxide and tap water (do not swallow this) or Liquadent mouthwash works well to clean the tongue and palate (sometimes the yeast or coating on the tongue is tough to get rid of). Rinsing and /or brushing with these helps.
Eyes
It is common to have focusing problems in the first few months. An appointment with a pediatric opthamologist may be required. We recommend yearly eye examinations because of the potential effect of medications on the eyes over time.
Gynecology
Adolescent girls should have a yearly gynecological examination including Pap smears.
Medic-Alert jewelry, do i need it?
We advise all transplant recipients to wear a medical identification bracelet or necklace. Information about Medic-Alert jewelry can be obtained by calling 1-800-ID-ALERT or ask your transplant nurse for an application.
We suggest the following information:
Lung Transplant or Heart-Lung Transplant, Immunosuppressed, St. Louis Children’s Hospital, (314) 454-6000. You also need to include medication allergies if your child has this. Check with the transplant nurse or physician if you have questions.
Health Maintenance
DIET
Diet recommendations will depend on your child’s disease process and nutritional status. Prednisone may increase your child’s appetite (and thus your child’s weight). We will follow weight gain or loss in clinic. A nutritionist will be available for recommendations and concerns. Older children may want to drink plenty of water or fluid every day to keep their kidneys healthy. Remember, several of the medicines your child takes are potentially toxic to the kidneys, which may be made worse if he does not drink enough.
Exercise
Daily exercise is strongly recommended (for the whole family and staff!!) Your child may participate in any form of non-contact sport or activity. Walking is excellent form of exercise. Recent studies suggest that a leisurely walk once a day may offer health benefits comparable to those derived from more intense exercise. Exercise helps to maintain weight, reduce loss of calcium from the bones, and improve the proportion of muscle to body fat stores. In addition, walking may lower blood pressure and help reduce stress.
Skin Care
Skin problems (usually minor) are very common in transplant patients.
Oily skin or acne: Your child (especially in pubertal or post-pubertal) may develop acne on the face, chest, shoulders, or back mostly due to prednisone. Primary measures used the control the acne are aimed at removing the excess oil and preventing formation of "white heads" or "black heads". Wash the areas of acne thoroughly three times a day, scrubbing gently with a soapy washcloth to remove the oil, dead skin, and bacteria. Neutrogena soap works well, but any drying soap is fine. Rinse soap off of the skin completely to leave pores open and clean. Use a clean washcloth each time. Shampoo hair and scalp frequently and keep the hair away from areas of acne. Benzoyl peroxide cream or lotion (5-10%), can be purchased over the counter and is helpful in drying acne. When acne is present, it is best not to use cosmetics but, if you must, use them sparingly. If the skin becomes dry, consider reducing the frequency of washing and application of medication. Remember that drying the skin is an objective of the treatment. Do not apply skin lotions to treat dry skin. If acne persists, we will refer to an excellent pediatric dermatologist who works closely with us. Check with the transplant nurse or doctor.
Dry Skin: Use a mild soap (Dove) for bathing and apply body lotion after bathing if your child has problems with dry skin without acne. Keri lotion or Moisturel are good over the counter lotions. Lac-Hydrin (which requires a prescription) can be ordered if severe dry skin persists.
Sun Exposure
Prednisone and Septra will make your skin more sensitive to the sun. Your child will probably burn and tan easier, faster, and to a greater degree than he did before transplant. Limit sun exposure and use sunscreen liberally! Transplant patients have an increased chance of developing skin and lip cancers. These cancers are TEN TIMES MORE COMMON IN TRANSPLANT PATIENTS than in the general population and are more likely if there is a history of sunburn. Ultraviolet rays are present even on cloudy days. We advise you to always protect your child’s skin by using sunscreen on any exposed skin and to avoid midday sun since ultraviolet rays are stronger at that time.
Skin Lesions
Warts may be particularly difficult to treat after transplant since they are caused by a viral infection. Moles that are changing, raised skins lesions, or sores that do not heal should be pointed out to the transplant nurse or doctor. We will refer you to a dermatologist for these problems.
Cuts and Scratches
Prednisone can cause the skin to become thin, making it tear, scratch, or bruise easily. Keep the skin clean so such areas do not become infected. Keep minor cuts and scratches clean and dry by washing with soap and water. Cleanse with hydrogen peroxide if desired. For large cuts, dog bites, or cut/skin tears that appear infected (redness, swelling, pus, increased tenderness), contact the transplant nurse. Systemic antibiotic therapy may be indicated.
Hair Care
Prednisone and cyclosporine will probably affect the condition of your child’s hair. Older children may want to avoid tints, dyes, bleaches and permanent wave solutions because they may make your child’s hair break. We recommend that your child wait until their prednisone dose is less than 20 mg/day before they have a permanent or other hair treatment.
Increased Hair Growth
This problem affects all children after transplant and may be rather annoying and distressing. It is a side effect of cyclosporine. Hair growth increases on both the face and body. Hair can be removed with hair remover cream (we recommend a special brand). We also have a special protocol to remove the hair. Be sure to test a skin area according to the directions on the bottle. This cream can cause severe irritation to the eyes and mucous membranes (even to your lips) so apply it carefully.
Instructions for Hair Removal
We recommend using NAIR GENTLER FORMULA CREAM HAIR REMOVER WITH BABY OIL FOR FACE TOO. Apply Nair to the affected area. Leave on for 5 minutes ONLY!! Remove with a wet wash cloth, rub with the hair and press firmly. Wash skin with soap and water after removing hair. Dry the area and then apply Hydrocortisone ointment 0.5% to the area. You only need to apply the Hydrocortisone once after removing the hair. It is very IMPORTANT to only leave Nair on the skin for 5 minutes, or severe burn may develop.
Electric razor can be very effective if you choose to shave. The blade should be changed according to the instructions.
Smoke
Your child should stay away from all forms of tobacco smoke. Smoke causes inflammation within the lungs whether primary or second-hand, making it easier to develop a lung infection. Your child should stay away from smoke filled areas as much as possible. If family members smoke, they should smoke outside of the home and the family car. We will provide personal counseling to adolescents about their own smoking choices.
Pets
If you have a pet, it is important that it sees a veterinarian on a regular basis. Your child should wash his hands after touching or playing with your pet. The child should never change kitty litter because of the potential infectious agent toxoplasmosis. We recommend against birds as pets because of the potential air borne infectious agents in their stool. Some reptiles carry salmonella in their stool, therefore if your child handles such creatures they need to wash their hands thoroughly afterwards.
Vaccinations
Your child cannot have live vaccines which includes measles (MMR), oral polio vaccine, and chicken pox vaccine We recommend annual influenza shots for patients and family members. Your child should also have receive a pneumovax shot (every 5 years) and a tetanus shot every ten years.
Dental
Dental visits are recommended every six months. Wait until six months after your transplant to schedule the first visit. Your child will require prophylactic antibiotic therapy before any dental cleaning or work. Because the mouth is a warm, moist area where bacteria exist in high numbers and these bacteria enter the blood stream transiently during dental work. Please inform your dentist that your child will require antibiotic’s according to the American Heart Association "Stand and Regimen in Patients at Risk" (usually amoxicillin or erythromycin).
Good mouth care, including brushing teeth, tongue, palate (to help avoid yeast infections), and flossing (to prevent tender, swollen gums) should be done regularly. Overgrowth of the gums is an important side-effect of Cyclosporine and seems to be exacerbated by poor oral hygiene. Oral surgery is occasionally required. A mixture of hydrogen peroxide and tap water (do not swallow this) or Liquadent mouthwash works well to clean the tongue and palate (sometimes the yeast or coating on the tongue is tough to get rid of). Rinsing and /or brushing with these helps.
Eyes
It is common to have focusing problems in the first few months. An appointment with a pediatric opthamologist may be required. We recommend yearly eye examinations because of the potential effect of medications on the eyes over time.
Gynecology
Adolescent girls should have a yearly gynecological examination including Pap smears.
Medic-Alert jewelry, do i need it?
We advise all transplant recipients to wear a medical identification bracelet or necklace. Information about Medic-Alert jewelry can be obtained by calling 1-800-ID-ALERT or ask your transplant nurse for an application.
We suggest the following information:
Lung Transplant or Heart-Lung Transplant, Immunosuppressed, St. Louis Children’s Hospital, (314) 454-6000. You also need to include medication allergies if your child has this. Check with the transplant nurse or physician if you have questions.