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Post Kidney Transplant

Activity after Surgery

One to two days after surgery you will be getting out of bed. At first you will sit on the edge of the bed or in a chair. When you are able to get up, it is important to start walking. Walking helps prevent complications, such as blood clots, pneumonia, and poor wound healing. It will also help build your strength and speed recovery.

Transplant Unit Visitor Guidelines

Visiting hours on the adult unit are 1:00 to 8:00 p.m. Visitors are restricted to two visitors at a time. No children under age 14 are allowed on the unit. For your protection, your visitors will have to wash their hands before going into your room and wear a mask while visiting. Family members are not allowed to stay overnight in the hospital room. It is very important that your family and friends do not visit if they are sick. Live plants, flowers, and latex balloons are not allowed in the unit.

Post-transplant Tests

After transplant you will need to have blood-work drawn to give us information on how you and your kidney and/or pancreas are working. The tests are:

  • Complete Blood Count (CBC) - There are two specific values that we look at in this blood test.
  • Hemoglobin (Hbg) - measures the ability of the red blood cells to carry oxygen to your blood tissues. If the value is low it could mean that you are bleeding, anemic, or are having a reaction to medication. Normal values are 12-17 mg/dl for males and 11-15 mg/dl for females.
  • White blood cells (WBC) - measure the ability of your body to fight infection. A high WBC may mean you have an infection. A low WBC may be from your medications or a virus. Normal WBC count is 4.0-11.5.
    Electrolytes
    There are specific values we look at in this panel of blood tests:
    Creatinine - tells us how well your kidney is functioning. When this number goes up it may be rejection or a side effect of your medications. Normal blood creatinine is 0.7-1.3 (depending on your body size)
    Bicarbonate - helps balance the amount of acid in your body. The normal bicarbonate level is 20-30.
    Potassium - It is important to keep the level around 3.5-5.0 to prevent life-threatening complications. Your doctor will closely watch these levels.
    Amylase - This is an enzyme that is made by the pancreas. It tells us how well your pancreas is functioning.
    Urinalysis - This is a urine test that shows if you have blood, protein, and/or bacteria in your urine. You may be given antibiotics after your transplant to decrease the risk of urinary tract infections.

Cyclosporine, Prograf®, or Rapamune® Drug Levels - These levels show how well you are absorbing your anti-rejection medication. Your medication dose is adjusted according to the blood level. A high level can be harmful to your transplanted kidney and/or pancreas; a low level may lead to rejection. Your drug level will be measured often for the rest of your life.

It is important to have your blood level drawn before you take your medicine in the morning.

Diagnostic Tests

Kidney Ultrasound - This measures blood flow, location, and size of your kidney. It uses sound waves to make a picture of your kidney.

Kidney Biopsy - This test looks at cells from your new kidney to see if there is a problem like a rejection episode.

Common Problems after the Transplant

You and your family will need to be dedicated to keeping your transplanted kidney and/or pancreas healthy and working. This means you will need to do what you have been taught by the transplant team. Sometimes you may have problems after your transplant even when you follow all the directions.

Some Problems That May Affect Your Transplant

Infection - Your body may not be able to fight infection as it did before transplant surgery. This is caused mainly by the immunosuppressive medications you are taking. Your doctor balances your medications carefully to keep your new organ working and to keep the risk of infection low.

Cytomegalovirus (CMV) - This is a common infection seen after transplant. It is a herpes virus that you may have, or that you get from the donor or another person. You are most likely to get CMV in the first four (4) months after your transplant surgery. This is when you are taking the highest doses of immunosuppressant medications. Your white blood cell count may also be very low. Ganciclovir (Cytovene®) or valganciclovir (Valcyte®) is the medicine used to treat CMV. You will need to watch for flu like symptoms, fatigue, and/or joint pain.

Prevent Infections by Following These Simple Rules

Always wash your hands with soap and water:

  • After you go to the bathroom
  • Before you eat
  • Before you take your medications
  • After working in the yard

Take good care of your teeth by brushing two times a day.

  • Get a new toothbrush every 3-6 months.
  • Use only your own toothbrush.
  • Go to the dentist twice a year for a checkup and cleaning.

Stay away from people who have infections such as:

  • Colds
  • Flu
  • Childhood diseases (measles, mumps, chicken pox, or shingles)

For six (6) weeks after the transplant surgery and during any treatment, stay away from crowded places such as:

  • Church
  • Sports events
  • Concerts
  • Shopping malls
  • Public transportation, such as buses

When eating or drinking, do not share drinking glasses or silverware. Wear gloves when you are working in the garden or with dirt. Wash your hands after working in the yard.

Take care of cuts or scratches right away.

  • Clean with soap and water.
  • Apply antibacterial cream that you can buy at a drugstore.
  • Apply bandage if needed.

Other ways to fight infection:

  • Wash raw fruits and vegetables well before eating them.
  • Stay away from old barns or silos. The dust can be very harmful. Stay away from activities in the desert, especially after a rainstorm.
  • Don't clean the cat box or the birdcage. Ask someone else to clean these every week or more frequently if needed.
  • Always wear a mask when going to the hospital or doctor's office for the first six (6) weeks after the transplant surgery.

Rejection

This happens when your body's immune system thinks your new organ is "foreign'' and attempts to destroy it. You will take immunosuppressive medications for the rest of your life to prevent rejection.

There are several types of rejection

  • Hyper acute rejection happens when the body immediately destroys the new kidney, this is rare because of the cross-match testing used before transplant.
  • Acute rejection - Although this can happen at any time after the transplant, most often it happens during the first several months. Giving you higher doses of medication by mouth or by intravenous infusion can treat this. You may get this treatment as an outpatient if it is recognized early.
  • Chronic rejection - This may happen months or years after the transplant. This type of rejection is resistant to treatment with current medications. This will cause your new organ to slowly stop working.

It is very important to report any of the following symptoms to the Transplant Clinic. The may be signs of infection or rejection. Call your doctor if you have any one of the following:

  • Fever - temperature that is two (2) or more degrees over your normal temperature
  • Muscle and joint aches
  • Nausea and/or vomiting
  • If you have contact with anyone who has chicken pox, mumps, or measles
  • Persistent headache
  • Irritability or just not feeling well
  • Chills
  • Change in your normal blood pressure
  • Diarrhea (this can lower your blood Cyclosporine or Prograf® levels)
  • Pain, redness, tenderness, or drainage over the transplanted organ surgery site
  • Fluid retention/weight gain (2 pounds in 24 hours)
  • Cough, phlegm, or hoarseness
  • Urinary problems:
    • Decrease in urine output
    • Inability to void
    • Pain or burning during urination
    • Blood in the urine
    • Strong odor to the urine
    • Feeling an urgent need to urinate or the need to urinate frequently

Diabetes

The term diabetes means that your blood sugar levels are too high. This can be caused by some of the medications you are taking for your transplant, such as Prednisone, Prograf® and/or Cyclosporine. You may need to start taking insulin or increase your dose to help control your blood sugar.

Acute Tubular Necrosis (ATN)

This is a condition when the kidney does not work right away after transplant. ATN is usually temporary. It can be caused by a long organ storage time on ice before transplant or by medications. The symptoms are treated in two ways:

  • By limiting the salt, protein, potassium in your diet, and fluid intake, or by dialysis
  • The transplant team will look at the lab results, your weight, your fluid intake, urine output, and vital signs to decide which treatment you will need.

Going Home After The Transplant

You need to be able to recognize any signs of rejection or infection early and report them right away. You will need to get the following supplies to monitor yourself at home:

  • Thermometer
  • Blood pressure cuff
  • Bathroom scale

The nurses will teach you how to use these before you go home. You will be taught to measure how much you are drinking and your urine output.

It is your responsibility to:

  • Keep all doctor appointments, even when you are feeling well.
  • Weigh yourself, take your temperature, blood pressure, and blood sugar (if this applies to you) every day. Record these in your log book and bring it with you to clinic appointments.
  • Complete your lab work on time.
  • Take all of your medications exactly as prescribed by your transplant doctor.
  • Check with your transplant team before you take any medications, even those you can buy over the counter.

If you are being followed by the LLUMC transplant doctors, you can call the team at the outpatient clinic during working hours. Monday through Friday at (909) 558-4252. After working hours call the hospital operator at (909) 558-4000 and ask for the kidney transplant surgeon on call.

Discharge Medications

The nursing staff, transplant pharmacist, or post transplant coordinator will teach you about the medications you will be taking when you go home. Arrangements will be made with your pharmacy to get your medications before you go home.

Medications

You are responsible for taking the medications that the doctor has ordered. You will be taught about your medications before you go home from the transplant hospital. Talk to your transplant pharmacist and/or transplant coordinator if you have any questions about the following:

  • The name of each medication and the reason you are taking it
  • When, how much, and how long you are to take each medication
  • The main side effects of each medication
  • What to do if you forget to take a dose
  • When to order more medication so you don't run out
  • How to order your medications
  • What you should avoid while you are taking your medications (such as drinking alcohol)
  • What medications you should not take in combination
  • What medications must be taken on an empty stomach

When you go home you will keep taking most of the medications that were started in the hospital after your transplant surgery. This includes immunosuppressant medications. These are medications that help prevent rejection of your new organ. You will probably have to take one or more of these medications for the rest of your life.

Remember

  • Never stop taking your medication or change the amount you take without checking with your doctor.
  • After you receive your transplant you will be responsible for your medication co-pay (if you have a co-pay). You will be required to pay this to the pharmacy that will be filling your prescriptions before you are discharged from the hospital.

General Guidelines for Storing Your Medications

  • Keep all of your medications in the original container.
  • Make sure the cap is on tightly.
  • Store the medication containers in a cool (<80 degree F), dry place away from direct sunlight.
  • Do not store medications in the bathroom--moisture can cause medications to lose their strength.
  • Keep all medications away from children.
  • Do not store medications in your car.
  • Ask your nurse, coordinator, or pharmacist to help you pick the best times to take your medications.
  • Take each medication at the same time every day.
  • Follow a written schedule.
  • DO NOT cut or crush a pill unless you are told to do so.

Important Medication Tips

  • Take Prograf® on an empty stomach.
  • Take your Prograf® or Cyclosporine doses 12 hours apart.
  • Take Prograf® or Cyclosporine AFTER the lab draws blood for a level.
  • Bring the medication with you and take it after your blood has been drawn.

Notify the Transplant Team If:

  • You are not able to take your medications by mouth because you are sick.
  • You think the directions on the label may be different than what you were told.
  • You need to take aspirin, Tylenol® (acetaminophen), other pain pills, cold medications, any over-the- counter medications, or medicines from a health food store.
  • You are having a reaction to your medications.

Diet and Nutrition

Now is a good time for you to think about making changes in the way you eat and exercise to help keep you healthy. It is important for you to eat a healthy diet, exercise regularly, and take your medicines. The medicines you take to suppress your immune system after transplant have side effects that are related to your diet and nutrition. Some of these side effects are:

  • Increased blood cholesterol and triglyceride levels
  • Weight gain
  • High blood pressure
  • Increased blood sugar levels

Follow the diet and nutrition information given to you after surgery.

  • Eat foods low in salt, sugar, and fat.
  • Eat foods that are high in fiber.
  • Follow the food guidelines (the ''food pyramid').

Take good care of your heart.

  • Eat a balanced diet.
  • Start an exercise program (talk with your doctor about this).
  • Before surgery, the transplant team requires that you stop smoking.
  • Limit egg yolks to 2-3 per week; the yolk has all the fat. Most recipes can be made with egg whites or egg substitute.
  • Use extra light or nonfat milk and other low fat dairy products. The lower the percentage of fat, the better!
  • Choose the leanest varieties of meat and trim off the fat.
  • Small portions of fried foods are allowed once in awhile, not all the time.

Good main dish choices

  • Skinless poultry, fish, beans--all cooked with very little fat.
  • Read labels. You will discover foods that are high in saturated fat or cholesterol.
  • Avoid foods that have lard, palm, and coconut oils in them.
  • Choose fresh fruits, vegetables, legumes, and whole grains, such as whole wheat and oat bran. More fiber in your diet in may help decrease cholesterol.
  • Avoid simple sugars as found in desserts, pastries, candies, and sodas.

Watch Your Weight!

After transplant, unwanted weight gain often becomes a problem. This happens because the medication that you take can cause hunger. It also changes the way your body uses fat and sugar. Food may taste much better, and this may make you eat more than necessary. Excessive weight gain can worsen complications such as high blood pressure and increased blood sugars.

  • Eat meals at regular times every day to avoid problems with hunger and unnecessary snacking.
  • Eat smaller portions and avoid seconds.
  • Instead of adding fat to foods, add flavors! Try fat free buttery flavored powders and fat free salad dressings.
  • Eat out at restaurants that offer low fat versions of regularly high fat foods.

Exercise

Start with short walks around your house or in the park once or twice a day. Ask a friend or family member to go with you. Gradually work up to 30 minutes a day, three to four times a week. You may choose other forms of exercise but consult your physician first. Physical activity helps burn calories, control weight, and reduce cholesterol. It can help you feel stronger and more relaxed. If you need a snack, choose low calorie items like fresh fruit, carrot or celery sticks, diet soda, or foods that are sugar free and fat free. Eat what you should, not what you could. It is up to you to control your weight.

Other Concerns

Potassium: Cyclosporine® and Prograf® can sometimes cause your blood levels of potassium to be high. Increased blood potassium can be dangerous. During this time, avoid potassium-rich foods, (oranges, asparagus, apricots, milk, artichokes, bananas, salt substitutes, avocados, cantaloupe, and bran).
Sodium: Prednisone may cause your body to retain sodium and fluid. This can lead to high blood pressure. Avoid foods high in salt (sodium). Season your food with other herbs and spices. Occasionally, you may use a small amount of salt in cooking. Do not add any more salt at the table.
Calcium and Phosphorus: If you are unable to consume foods high in calcium and phosphorus (such as low or nonfat milk and dairy products) you may need to take a calcium and/or a phosphorus supplement.

Clinic Visits

After your surgery you will be seen by the surgeon in the Transplantation Institute Clinic. This is on the lobby level of the Medical Center, Room 1405. This is the same place you saw the doctor before your transplant.

These visits are to check any problems that you may have, such as rejection or infection. They are also to make sure you are taking your medications correctly, and that you are not having any side effects.

Appointments: (909) 558-4252
Other numbers: (909) 558-8684

Clinic hours:
Monday - Thursday 8:00 a.m. to 5:00 p.m.
Friday 8:00 a.m. to 2:00 p.m.

  • At first you will see the doctor two times a week until he/she is sure that you are stable. Your visits will decrease to once a week when your lab values are stable and you are feeling well.
  • If you are having problems, call the triage nurse and follow his or her advice.
  • You need to have your blood drawn at the lab the day before you come to the clinic. The clinic nurse will call you in the evening on the day of your appointment. He/she will tell you about your lab results and any changes in your medication. It is important that you be available by phone between 4 p.m. and 5 p.m., or have an answering machine.
  • If your telephone number changes, please call and tell the clinic staff.
  • You can call and leave a message for the triage nurse any time, even after clinic hours. A call after hours will be answered the next day. If you have a fever or an urgent problem after hours, please call (909) 558-4000 and ask to speak to the kidney transplant surgeon on call.
  • Please bring your Transplant Patient Log Book with you to all clinic visits. The nurse and doctor will go over the medications and dosages with you. Any time there is a change in your medication, you will need to write it in your log book.

Your Primary Physician

The transplant surgeons will follow you in clinic after you are discharged from the hospital. They are in charge of your care until you are medically stable, which usually takes about six weeks. When you are stable your care will be transferred to your primary nephrologist. You will need to make an appointment to see your primary nephrologist within one week after you stop coming to the Transplant Clinic. This doctor will continue your medical care and see you routinely. He or she will check your lab work and your progress closely for the life of your transplant. You will need to schedule appointments with the Transplantation Institute at three, six, and nine months, then yearly to check on your progress.

Preventing Problems After Transplant

Cancer Prevention
Some of the medicines you take increase the chance of developing cancer. It is important to have regular check-ups with your doctor. Your doctor will do tests to detect signs of cancer. Women need to have a yearly PAP smear and mammograms. Men should have a PSA (prostate specific antigen) blood test done to screen for prostate cancer.

Sun Exposure
Transplant patients have an increased chance of developing skin and lip cancers. The medications you take after transplant make you more sensitive to the sun. We recommend that you wear sunscreen lotion (SPF 15 or higher) and lip balm every day, rain or shine, when you are outside. It is also a good idea to wear a hat and/or other protective clothing, like long sleeves and long pants. It is important for you to see a dermatologist if you have any changes or marks on your skin.

Dental Care
You must see a dentist regularly. You need to take antibiotics before you have any work done on your teeth (this includes cleanings). The antibiotics help prevent infection. You need to let your primary doctor know before you have any dental work done. He or she will give you a prescription for the antibiotics.

Smoking
The Surgeon General of the United States says that smoking is harmful to your health; you must stop smoking so you can be in the best health possible. We can help you find a stop-smoking program.

Routine Health Care
You need to check with the transplant surgeon before you take any new medications. This means prescription medications and ones that you buy over-the-counter. Also, check with the transplant doctors before you have any vaccinations.

Vaccination and Immunizations
Your vaccinations might have been updated before your transplant. It will be your responsibility to keep them up to date from now on. We recommend a tetanus vaccine every ten years. The shot to prevent pneumonia needs to be given every five years. We recommend that you speak with your primary doctor about the hepatitis vaccines. We Do Not recommend the flu vaccine within the first year after your transplant. After the first year, you should get a flu vaccine every year. For a week after you get the flu vaccine, your Prednisone dose should he increased. Please consult your doctor for the proper dose.

Travel
Once you are feeling better and your lab work is stable, you may travel. Please talk to your doctor before you make travel plans. You may need special precautions. Remember to carry your medicines with you at all times. Do not check your medications into the baggage compartment. Take extra medications, in case you are delayed in returning.

Alcohol/Street Drug Use
We do not recommend drinking any type of alcohol. Alcohol will interfere with and can cause dangerous changes with your transplant medications. Do not use any street drugs. These could cause serious life threatening infections or death. Drugs prescribed by your doctor should be taken in the amount ordered.

Alternative Medicine/Herbal Medications
We do not recommend taking herbal or alternative medications. These may have drug interactions with your immunosuppressants.

Medic Alert Bracelets
We recommend you wear a medic alert bracelet. The clinic has order forms available. The bracelet should say who your doctor is, what type of transplant you have had, and that you are taking immunosuppressive medications.

Pets
You can have pets at home after your transplant. If you have birds or cats, have someone else clean the cages or litter box. These may contain bacteria that can be harmful to you.

Resuming Activities
Once you are discharged from the hospital you may slowly begin your normal activities. Do not do any strenuous activities or abdominal exercises for at least six weeks. Do not lift anything over ten pounds for six weeks after the surgery. If you have any questions about your activity level, check with your doctor.

Returning to Work
You should be able to go back to work six to eight weeks after the transplant. If your job involves any lifting or strenuous work, you may need to take more time off. The clinic staff and your doctor will help you determine when you should return to work.

Birth Control
Talk to your doctor about birth control after your transplant. Women may be able to become pregnant after transplant, and men may be able to father children. The chances of a successful pregnancy depends on the type of medication you are taking.

Pregnancy
It is risky to have a baby after transplant. Be sure to talk to your doctor about this before you get pregnant. He/she will help you plan for a successful pregnancy.