Emergency Medical Identification
Following transplant, you should wear a medical identification bracelet or necklace at all times. Your nurse can provide an order form for this essential life-saving item. Indicate on the form that you have had a kidney transplant, are "immunosuppressed," and have our 24-hour number (212.305.6469) included on the tag. You may want to include your local doctor's phone number as well. If the transplant patient is a child, the parents' or guardian's names and contact phone number(s) should be included.
Your transplant team may be able to recommend a pharmacy that will send all your monthly medications directly to your home. The insurance company who issues your drug plan will have to pre-approve the use of such a service. Generics are generally fine, but please check with the transplant team if your pharmacy wants to make substitutions. Many medications will interact with your immunosuppressants; for this reason, you must always consult with the transplant team prior to taking any new medications, or altering the dosage of the immunosuppressants and other medicines we have prescribed.
Exercise will become an important part of your life, enabling a faster return to your routine activities, and helping you maintain overall improved health.
Regular exercise will help you control your cholesterol levels, blood pressure, and weight. Exercise releases tension and helps boost your energy, and encourages positive changes in other important lifestyle habits—such as maintaining a healthy diet.
Exercise has been shown to improve muscle tone, as well as the functioning of your heart and lungs. It also helps reduce stress, and achieve and maintain ideal body weight.
When you return home, we recommend that you exercise daily. We suggest walking 15-20 minutes every day, and gradually increase time as tolerated.
Do not resume strenuous exercise or lifting weights until you have been cleared to do so by the transplant team.
School and Work
You should be able to return to school or work within two months. Your transplant team will help you decide what is best for you. You may wish to discuss career counseling with the transplant team's social worker.
You will not be able to drive for approximately two to four weeks after your transplant. You should speak with your physician before driving for the first time after your transplant. The initial doses of the medications we prescribe can cause tremors, weakness, and blurred vision. These side effects, which are often worse in the first few months, make handling a car difficult. Therefore, we recommend that you abstain from driving until you are cleared to do so by the transplant team.
Travel within the first two to three months after transplant is not recommended. Travel outside the continental U.S. is not recommended for the first six to 12 months. Thereafter if you are traveling to an underdeveloped country please consult your physician regarding vaccinations and the whether you need to avoid water or certain foods in that area.
Developing certain cancers is more common when taking immunosuppressive medications. Because of this, we recommend monthly breast and testicular self-examination and routine medical check-ups. PAP smears, breast exams, testicular exams, and skin cancer screening should be done by your physician every year. Your local physician can perform these tests but duplicate reports should be sent to the transplant team to help us with your follow-up care.
Immunizations and Vaccinations
Post-transplant, annual flu shots are recommended after 1 year. If additional innoculations are necessary, you should only receive "dead virus" vaccinations. You may not receive "live virus" vaccines, such as varicella or MMR, because of risk of transmission. Care must be used in contact with family members who were recently immunized, especially infants receiving the polio vaccine, as the virus will be shed in their stool.
Prednisone may cause acne on your face, chest, shoulders, and/or back, plus cyclosporine can make your skin oily in these areas. Wash any acned area(s) thoroughly three times a day, every day. Scrubbing gently with a wet washcloth and mild soap will help remove accumulating oils, dead skin, and bacteria. Vigorous rubbing and scrubbing can irritate your skin. Avoid soaps that contain creams or oils (such as Dove®, Tone®, or Caress®) because they will aggravate the acne. Completely rinse soap from your skin to leave your pores open and clean. Use a clean washcloth each time you wash. If your skin becomes excessively dry, stop washing those areas temporarily to allow the skin to recover its natural moisture.
If washing with bar soap does not improve or control your acne, use a non-prescription acne mediation with benzoyl peroxide (Oxy® 5 or Oxy® 10). Start by applying benzoyl peroxide 5% once a day. If redness and peeling are not excessive after three days, apply twice per day, gradually leaving it on for longer periods of time until it is left on all day. You may need to use a 10% benzoyl peroxide preparation if your acne is not controlled by the 5% preparation.
We recommend that you do not use Retina A, a powerful acid form of vitamin A. It causes increased sun sensitivity, which should be avoided because you are taking Prednisone.
Other Ways to Control Acne
If you have problems with dry skin, use a mild soap and apply body lotion after bathing. For severely dry or scaly skin you may need a rich body lotion such as Alpha Keri®. Alpha Keri also offers an excellent bath oil. There are many good moisturizing products available from your local drug store without prescription; try to find those that work best for you.
Cuts and Scratches
Keep minor cuts and scratches clean and dry by washing daily with soap and water. If you wish, you may apply an antiseptic such as Betadine® solution. For larger cuts, dog bites or serious bruises you should contact your physician immediately.
Transplant recipients run a substantially increased risk for developing skin and lip cancers, and this risk increases over time (see below). Prednisone makes your skin more sensitive to the sun, so you will burn easier, faster, and to a greater degree than you did before the transplant. Prolonged and repeated exposure to the sun's ultraviolet radiation produces permanent and damaging skin changes. The darker your skin, the more natural protection you have against burning and skin damage. But, bear in mind that you can now burn even if you are black because your medications make you more sensitive to the sun.
You will not need any special skin care unless you develop problems with acne or dry skin. You should take a bath or shower as often as necessary (daily or every other day) to keep your skin clean. It is important to be aware that any persistent skin problem will require evaluation by a dermatologist.
Skin cancer is more common in transplant recipients. Therefore, it is recommended that you see a dermatologist on an annual basis.
Because of your skin's enhanced sensitivity, it is important that you see a dermatologist on an annual basis for skin cancer screening. It is also essential that you limit your exposure to the sun, and that you protect yourself with proper clothing and sunscreens when you are outside.
Warning signs of skin cancer are any sore that bleeds, scabs, grows, or does not heal in a few weeks. Such sores are most likely to appear on the exposed parts of your body like your face, neck, head (especially if you are bald), and your hands and arms. A mole that bleeds or changes color or size must be examined immediately.
The sun's radiation responsible for skin cancers are the ultraviolet (UV) rays, which are present even on cloudy days and in shady areas. We advise you to always protect your skin from exposure to UV radiation. Avoid the midday sun (10:00 am-3:00 pm) when ultraviolet rays are strongest. The window glass in cars prevents most harmful ultraviolet rays from reaching you. For extra protection from the sun, wear sunscreen lotion and lip balm (SPF 15 or above), broad brimmed hats, long sleeves and slacks every day when you are outdoors.
Prednisone often weakens the condition of your hair. Permanent wave lotions, tints, dyes, and bleaching may cause your hair to break. We recommend that you check with your physician before you have a permanent or color your hair.
Tacrolimus (Prograf®), an anti-rejection medication, can cause hair loss. The problem of increased hair growth is caused by cyclosporine and to a lesser extent, by prednisone and is especially annoying to women. You can remove hair with a hair removal cream. There are several on the market made especially for the face—i.e., Sally Hansen® facial hair remover, Elizabeth Arden® facial hair remover, or Nair's® Only for Facial Hair remover. Be sure to test your tolerance of the product by following the directions on the bottle. Hair removers can cause severe irritation to the eyes, lips, and mucous membranes, so apply carefully. A safer way to diminish the appearance of excessive hair is to bleach the growth with a 50% peroxide solution.
Patients should be particularly careful when using these products on infants and children because their skin tends to be more sensitive.
It is important to have annual vision check-ups with an ophthalmologist. The immunosuppressant prednisone can cause cataracts and initiate changes in your vision. You should schedule your first postoperative ophthalmology exam at six months, or when your prednisone dose is set at 10 mg per day.
You may have received a dental consultation during your pre-transplant workup to be sure that any necessary dental work would be completed before transplantation. If so, it is not necessary to have routine dental work performed for at least six months following transplant. This includes having your teeth cleaned. However, if you have tooth or gum pain, you should see your dentist immediately.
After transplantation, you need to take an antibiotic when you have dental work done, including cleaning and polishing. You can obtain a letter from the Transplant Office for your dentist regarding your antibiotic prescription.
It is extremely important that you practice good oral hygiene after your transplant. Brush your teeth once or twice a day. You should floss your teeth after transplant, but flossing can irritate your gums and cause bleeding, so be gentle.
If your dental work was not completed before transplantation, you must see your dentist for evaluation within the first few months after your return home. Follow the procedure outlined below when you visit the dentist.
If you are on prednisone, the dose should be as low as possible when dental work is done to reduce the possibility of infection and bleeding, and to enhance the healing process. But do not avoid dental checkups just because your prednisone dose is still high. It is better to have healthy teeth and gums than to allow them to become infected.
If you or your dentist have any questions, contact the transplant office for further information at 212.305.6469.
We recommend strongly that you do not smoke. Smoking damages the lungs, putting you at greater risk for lung infections, including bronchitis, emphysema, and pneumonia. It also increases your risk of developing cancer.
Cancer is a leading cause of death after transplantation and smoking dramatically increases the risk of developing lung cancer after transplant. Smoking diminishes your red blood cells' ability to carry oxygen, so less oxygen reaches all of your tissues and this decreases your ability to heal. Smoking narrows your blood vessels, especially those in your legs, arms, and heart. It also increases the acid in your stomach which will delay or prevent the healing of any ulcers you may develop. All of these problems are even more serious in individuals taking immunosuppressive medications.
Tips to help you quit
It is not easy to give up smoking. You may become anxious or irritable. You may develop headaches, nervousness, dizziness, muscle cramps, fatigue, sleepiness, increased sweating, as well as difficulty focusing your attention, a loss of appetite, increased craving for food, or an intense craving to smoke. However, if you stick to your decision not to smoke, you will be breaking a habit that is harming your health and, in time, the "withdrawal" symptoms will diminish and you'll feel better than ever before.
Your ability to choose not to smoke grows stronger each time you repeat the choice. Instead of thinking about how much you want to smoke, remind yourself of smoking's harmful effects and the health benefits that will be yours without smoking.
Sexuality is an important part of who you are as a person. It is more than sexual intercourse. Sexuality involves how you feel about yourself as a man or woman, the giving and receiving of sensual (feeling) pleasure, the desire for closeness with another person, and the release of sexual tension.
A person's sexuality is affected when they have kidney failure. This is caused for a variety of reasons. Men may experience impotence (problems getting or maintaining an erection) and a decreased sexual drive (libido). Women's menstrual cycles may become irregular or stop completely.
Some patients take blood pressure medications that can interfere with sexual function. These medicines can cause drowsiness and fatigue, in addition to decreased sexual drive, menstrual cycle irregularities, and/or decreased vaginal lubrication. Sometimes, even though the body functions normally, the sexual experience is not enjoyable. Some patients have found talking to a counselor helpful and this can be arranged by the transplant team.
Kidney transplantation can improve some aspects of your sexual functioning. Chronic fatigue should diminish and make sexual life more enjoyable. Men will typically have fewer problems in gaining and maintaining an erection. A woman may resume her menstrual cycle and pregnancy is often possible.
After your kidney transplant, however, some things may not get better. You may still need blood pressure medicines and these may affect your sexual functioning. Talk with your doctor or nurse if you are concerned about your blood pressure medicines. Your physician may be able to change your medication to minimize or eliminate side effects that affect your sexual activity, while still controling your blood pressure.
Sexuality can also be affected by the medicines that you take to prevent rejection if they cause certain side effects. These might include developing a "moon face," acne, bruising, and/or increased body hair. If a person feels less attractive because of these changes, he or she may feel less interested in sex. Talking with your doctor or nurse about how to diminish the side effects can help.
It is common for transplant recipients to resume a more normal lifestyle, including sexual activity, as they recover. Sexual function may not have been an important part of your life before the transplant, but it may now be higher on your agenda. It is not unusual to worry about something that was unfamiliar in your recent past, but is now taking on new importance. You may also be concerned about the safety of your new kidney during intercourse.
Women using immunosuppressant medications can develop urinary tract infections with intercourse because they are more prone to infection, and because of the proximity of the vagina, urethra, and anus. To avoid infections, it is important to wash well after bowel movements and to wipe from the front to back. Urinating before and after intercourse and drinking a lot of water can help to prevent urinary tract infections. Symptoms of urinary tract infection are burning while you urinate, smelly or cloudy urine, a fever, or frequent urination. Contact your local doctor's office for proper diagnosis and treatment.
Even though you may not be having regular menstrual periods, it is still possible to become pregnant. It is important to use some type of birth control to avoid unwanted pregnancy. The recommended choices are a diaphragm, sponge, and/or condoms. Used correctly, with spermicidal jellies or creams, they are very effective. There is a higher risk for developing a urinary tract infection if a diaphragm is used. If you have questions or concerns about birth control, talk with the transplant team.
Some people want to start a family once they have had a kidney transplant and have recovered their health. For many women this is possible, but there can be greater risks to the mother and fetus. If planning a pregnancy, it is important to discuss potential risks with transplant team members so that you can make the right decision for you and your family. Medication adjustments are frequently needed.
The transplant program does not recommend pregnancy within the first year after transplant.
A serious illness such as you have experienced can create many personal and family stresses. To help you and your family make any necessary adjustments, we have a social worker and psychiatrist available for consultation. They are available when you are in the hospital or in the clinic to help you with the concerns that arise after your transplant.
Our transplant team can help you with: job planning or rehabilitation; family stresses, such as parent-child conflicts, marital conflicts, and changes in sexual functioning; and financial concerns, such as questions about Medicare, disability, and insurance.
Your social worker will evaluate your needs, refer you to an agency in your home community, or provide direct counseling if the circumstances and distance permit. You may be able to resolve many questions by talking with the social worker. If you need specialized counseling, we will help you find appropriate alternatives.
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