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Division of Transplantation

Information for Transplant Recipients

Introduction

The purpose of this booklet is to provide you with the information you will need following your transplant.

The University Hospital post-transplant program is designed to help you make the change from dialysis patient to transplant recipient. We will work closely with you to make sure that your kidney is functioning at its best.

We look forward to maintaining close contact with you and are always available to assist you: But remember that You are the most important member of the team caring for your new kidney.

You play a major role in your own care and together with your doctors and nurses you have a great deal of responsibility in keeping your kidney functioning at its best. We cannot do it without you.

The Transplant Team

The transplant team at University Hospital is made up of highly skilled Transplant Surgeons, Nurses, Transplant Coordinators, Nephrologists (kidney specialists), Social Workers and Dietitians. Transplant coordinators are registered nurses who specialize in transplantation. They work closely with the surgeons and other members of the transplant team and are an important part of your transplant out patient care. Together with you, the transplant team will provide the best possible care both before and after your transplant.

How to Contact The Transplant Team

The transplant team is always available to help you in any way possible.

You must not hesitate to call with any question or problem pertaining to your general health and kidney. The transplant coordinators will be happy to help you.

The 24 hour Transplant office telephone number is (718) 270-3168 or (718) 270-3169.

Use this number any time. If you need to reach us after office hours, call either of the above numbers and listen to the recorded message. You should then call the number given for the transplant answering service and ask the operator to page the Transplant Coordinator. Your call will be returned as quickly as possible.

If there is a dire emergency, please go to the nearest hospital emergency room.

What to expect after your transplant

The Hospital Stay

After your transplant you should expect to be in the hospital for 5 to 10 days depending of the function of your new kidney. During this time you will meet many members of the transplant team who will teach you how to take care of yourself and your new kidney.

Don't be surprised if the kidney does not begin to work right away. This is quite common and usually temporary. It does not mean that the transplant will not be successful. You may need several dialysis treatments until the kidney recovers normal function.

Medications

Soon after transplant, the Transplant Nurses will work closely with you to teach you about the medications you must take in order to keep the kidney functioning. You will learn the name of each medication, what it does, when and how to take it, and its side effects. It is very important that you know how to take your medications properly. The nurses will make sure that you are able to take your medications exactly as prescribed by the doctor before you leave the hospital.

The Surgical Site

In addition to learning how to take your medications, you will learn how to examine your new kidney and surgical site. This is so you can identify potential signs of infection, rejection, or inflammation of the surgical site which must be identified and treated quickly.

Examine the kidney area every day for three (3) months as you were taught. Call the Transplant Coordinator if you are experiencing soreness, tenderness, warmth, swelling, redness or drainage from the transplant incision.

You may have several tubes or drains in place following your transplant including an “IV” (intravenous ) Line for giving you fluids or a “Foley catheter” to monitor your urine output. Most of these will be removed prior to your discharge from the hospital, however, you may need to have them in place at home. If you go home with any of these, arrangements for their care will be made before you go home.

Going Home

After leaving the hospital and resuming your regular lifestyle you will probably find yourself enjoying life more every day as your recovery continues. There are several things you must do at home to monitor your general health and take care of your new kidney.

The following instructions are recommended for the best management of your new kidney. If you are having any difficulties with the procedures or if you have any questions, please call the Transplant Coordinator.

Prior to discharge, you will be taught how to record self-monitoring of your fluid intake, urine output, blood pressure, heart rate, temperature, weight, and kidney exam on the Patient Home Monitoring Record (this will be given to you by your Transplant Nurse in the hospital.

Please bring the monitoring record, medication card, and diabetic record (if you have diabetes) with you to each clinic visit.

Your General Health

The immunosuppressive medications you must take to prevent rejection of the kidney may make you more susceptible to infections, especially within the first three (3) months after the transplant. During this time, you should maintain good personal hygiene and avoid large crowds or people who are ill with colds, flu or any other contagious conditions.

Routine Self Checks

There are several self checks that you must do everyday to help your doctors evaluate the function of your new kidney.

Temperature

Take your temperature two (2) times a day:

  1. In the early morning on rising
  2. Late in the afternoon around 6 p.m. or...
  3. Whenever you feel as if you have a “fever”.

After one (1) month, take your temperature only if you do not feel well. If your temperature is 100° F. or higher for two (2) readings call the Transplant Coordinator. It may be an unrelated problem such as a cold or flu or it may be a sign of organ rejection.

Blood Pressure

Hypertension is not uncommon following transplant. Before leaving the hospital you will be taught to monitor your blood pressure at home. You should monitor your blood pressure twice a day at home and note the time of day when it is checked.

Prolonged hypertension can be harmful to the kidney so it is important that you notify the transplant team if your blood pressure is high (or low) at home. It is a good idea to bring your home blood pressure record with you when you come to see the doctor. Limiting your salt intake, along with regular exercise and weight control will help keep your blood pressure controlled.

Diet and exercise alone may not be enough to keep your blood pressure controlled and you may need to take medication. It is important that these medications be taken as prescribed and your blood pressure checked regularly.

If you have high blood pressure and medication was prescribed, please take your blood pressure before each dose. Continue to take your blood pressure as instructed by your doctor.

If your blood pressure is low, do not take your blood pressure medication. If you must hold your medication for more than one (1) day or four (4) doses, call the Transplant Coordinator.

If your blood pressure is high, take your medication and call the transplant coordinator.

Heart Rate

Take your heart rate two (2) times a day as taught. If you are taking a blood pressure medication which also decreases your heart rate, take your heart rate and blood pressure before each dose. If your heart rate is less than 60, do not take the medication. If your heart rate remains less than 60 for one (1) whole day or two (2) doses, call the Transplant Coordinator. Continue to check your heart rate for one (1) month. Your doctor will tell you if you need to take your heart rate for more than one (1) month.

Diet

There will be many changes in your diet as your kidney achieves normal function. There are, however, several guidelines which you must follow:

  • You may eat a full regular diet with no fluid restrictions. It is important that you drink plenty of water to keep your kidney well flushed.
  • You do not have to follow a restricted sodium diet, however, you should not add any additional salt to your food.
  • You must continue to follow your prescribed diabetic diet if you are diabetic.

Cholesterol

One of the anti-rejection medications, Cyclosporine, tends to raise your cholesterol. You should limit your intake of fatty foods such as red meat or fried foods, even if you do not take Cyclosporine.

Potassium

Sometimes your potassium will increase in the early weeks after transplant. If so, we may ask you to avoid high potassium foods such as bananas or orange juice during this time.

Prednisone

Prednisone is a steroid which you must take to maintain your transplant. One of the side effects of Prednisone is that it tends to increase your appetite. This can easily lead to an increase in your weight. Many people report that their appetite cannot be satisfied no matter how much they eat (diabetics are familiar with this feeling). It is, therefore, wise to enjoy the improved taste of food after transplant with an eye on weight control.

Weight

Weigh yourself every day wearing the same amount of clothing and at the same time (before breakfast) for the first one (1) month. After the first month, weigh yourself two (2) times a week. If you gain or lose more than two (2) pounds in one day, or six (6) pounds in one week, call the Transplant Coordinator.

Controlling Your Weight After Transplant

Maintaining your weight after transplant can be quite challenging. Being on an unrestricted diet, together with an increased appetite can quickly lead to excess weight gain, especially if you are not exercising regularly. Choose foods that are healthy and nutritious such as fruits and vegetables and avoid “empty calories” such as high fat high sodium fast foods and snacks.

Choose foods from the basic food groups and limit your intake of fried or highly processed foods. Snack on low fat foods such as fruits, and limit your intake of highly sweetened soft drinks, cakes and sweets. We will be happy to arrange for you to meet with a dietician for specific meal planning if you wish. This can be easily arranged through the Transplant Coordinator.

Exercise

Believe it or not, regular exercise will make you feel better and speed your recovery.

You may begin a regular exercise program after discharge from the hospital. You should begin by walking 10-15 minutes each day and increase your activity daily as you feel better. Build up your strength and stamina slowly when doing regular exercise. Walking, swimming and bicycling are exercises that are healthy and fun to do.

You should not lift anything over 15 pounds (7 kilograms) for about three (3) months after the transplant. Avoid strenuous activities such as running or jogging for about six (6) weeks.

As a transplant recipient you should not participate in contact sports such as football, hockey or rugby as these may result in injury to the kidney.

Things to Remember...

Intake and Outake

Measure your intake using the conversion table below and record it on a log as you were taught, for one (1) month after surgery. Measure your urine output using the graduated cylinder as you were taught, for one (1) month after surgery. If you think you are urinating less and your weight goes up, call the Transplant Coordinator.

Approximate Equivalents (Household Metric)

1 Quart (32 oz.) 1,000 ml.
1 Pint (16 oz.) 500 ml.
1 measuring cupful (8 oz.) 240 ml.
2 Tablespoons (1 oz.) 30 ml.

If you drive a car you can resume driving after three (3) weeks. You should always wear a seat belt when in a car even if the belt is over your kidney.

Sexual Activity

You must practice safe sex at all times.

You may resume sexual activity after 2-3 weeks depending on how you feel. Sexual activity will not harm the transplanted kidney but you may find some positions more comfortable than others. If the activity hurts your incision, you may want to try experimenting with pillows or different positions to find what works best for you.

Women may resume menstruation within several months after transplant and should be aware of the increased possibility of pregnancy. Women should take precautions not to become pregnant in the first year following the transplant. You should discuss birth control with your doctor.

Avoid using I.U.D.s because they carry a risk of infection. Ask your doctor about other forms of birth control. Women should have regular gynecological check ups and a pap smear every year.

Both men and women should examine their breasts monthly (same time each month).

Men who are 40 years old and over should see a Urologist to have a prostate exam done, and have an exam yearly after age 45.

Men who were unable to have an erection prior to transplant may find that they have normal sexual function with their new kidney. If you are unable to have an erection after the transplant please discuss this with your doctor.

If you have had herpes in the past you may have a flare up after transplant as a result of the medications and the stress of surgery. Check your genital area for herpetic lesions and notify the transplant team should you develop any genital lesions.

Do not have unprotected sex if you have a genital herpes lesion.

Dental Care

You should see your dentist regularly (at least every six months). If you are taking Cyclosporine (Neoral), it may cause some swelling of your gums. While this usually improves as the doses of Cyclosporine are decreased, you must brush and clean your teeth and gums to prevent complications. If you require major dental work or oral surgery please contact the Transplant Coordinator prior to the procedure. You must take an antibiotic before having any dental work done in order to prevent infection.

Eye Exams

You should have regular eye exams (every 6 months) especially if you are diabetic. Kidney transplantation does not cure the diabetic retinopathy which damages the small blood vessels of your eyes. Careful glucose control along with regular medical check ups are the most effective way to prevent damage to the precious blood vessels of your eyes.

You may notice some changes in your vision after your transplant. This is one of the effects of the high doses of the steroid, Prednisone, that you must take to prevent your body from rejecting the kidney.

These changes in your vision should improve as your Prednisone dose is decreased during the post transplant period. For this reason it is recommended that you put off corrective lens changes if possible until your maintenance dose of Prednisone is reached (about two months).

Vaccines and Immunizations

Do not receive any immunizations or vaccines without first contacting the Transplant office. Your doctor will discuss with you which immunization or vaccine you should receive.

Avoid exposure to people who are ill with colds or the flu.

If you have not had chicken pox and are exposed, please call us immediately. You may need to receive a special medication. Chicken pox can be a serious illness for transplant recipients.

Skin Care

Acne is not uncommon with steroid use so do not be alarmed if acne develops after transplant, especially on your face, chest or back. This usually improves as your steroid dosage is reduced. It is important that you keep your skin clean. Wash your face several times daily. You may wish to use a special soap that has antibacterial ingredients. Shampoo your hair frequently and keep your hair off your forehead.

Protection From the Sun:

Transplant medications make you more susceptible to skin cancer than the average person. Use a sun block SP Factor of 30 or above. Wear sunglasses or a hat if you go out in the sun. Observe your skin for any of the following:

  • Raised areas
  • Changes in a wart
  • Any sore that does not heal

Notify the doctor should any of these develop.

Prevention of Infections

Transplant recipients are at a higher risk of developing an infection, especially within the first three (3) months after transplant when the doses of anti-rejection medications are at their highest. Among the side effects of these medications is a weakening of your body’s ability to fight infections.

You are advised to follow the precautions listed below to help prevent infections:

  • Avoid contact with people who have colds
  • Wash your hands frequently
  • Practice good oral hygiene. Rinse your mouth frequently with a good strong mouthwash. Brush and floss your teeth daily.

Notify the Transplant Coordinator of any of the following:

  • You have been exposed to chicken pox, measles, T.B., or other infections
  • You develop a heavy white coating on your tongue
  • You develop a sudden sore throat or sores in the mouth
  • You develop any discharge, itching or burning from your vagina, penis, scrotum, or rectum
  • You develop a skin rash
  • You develop pain along your back

Signs and Symptoms of Infection Include:

  • Fever of over 100 degrees F.
  • Headache
  • Shortness of breath
  • Dry cough
  • Cough which brings up mucus
  • Diarrhea
  • Vomiting
  • “Burning” sensation on urination

Rejection

Rejection of the transplanted kidney is not unusual and can usually be treated and reversed on an out-patient basis by adjusting your medications.

Rejection episodes are most likely to happen within the first three (3) months after transplant. For this reason, your doses of anti-rejection medications are at their highest during this period. These doses will be slowly tapered or lowered during the first several months after transplant.

Major rejection episodes may require hospitalization for more extensive testing which may include a biopsy of your kidney and intensive anti-rejection therapy.

Rejection episodes are usually reversible with treatment.

Signs and Symptoms of Rejection

Notify the Transplant Coordinator or doctor immediately if you develop any of the following symptoms. Please note that while any of these may be a sign of rejection, they may also be a sign of something else so do not be alarmed. Call us and we will advise you.

Clinic Information

You will be followed in the out patient area twice a week for the first several weeks after you are discharged from the hospital following transplant. The clinic area is located on the first floor of the hospital building.

Patients are seen for follow up care in the Outpatient area by appointment and time of arrival. Please be punctual.

Transplant Clinic Schedule:

CLINIC C — THURSDAY MORNINGS AT 8:15 A.M.
CLINIC C — TUESDAY MORNINGS AT 10:00 A.M.

Call (718)270-1855 to schedule appointments

When you arrive, please report to the reception desk in Suite I where you will be registered. You will be given laboratory request slips for your blood and urine tests. Please tell the clerk whether you take Cyclosporine (Neoral) or Prograf (FK506) so he/she may give you the correct lab slip for the medication you take. You will be directed to the outpatient laboratory where a blood sample will be drawn. As soon as the test results are received from the laboratory they are recorded in your chart and reviewed by the Transplant Surgeons. If the doctor determines a problem with any of the test results or wishes you to make a change in your medication or clinic appointment, you will be notified by the Transplant Coordinator. Please be sure to notify us if you change your telephone number or address. It is extremely important that we be able to reach you.

After your initial visit, appointments must be made at least two days prior to the date you wish to bee seen. If you have an emergency or a problem that cannot wait until the next available appointment, please contact the Transplant Coordinator at (718)270-3169.

When you arrive in Suite I on Thursday morning go to the reception area and be sure to sign in on the Transplant clinic “Sign In sheet” located in the clinic area. Your name will be called and you will be given your laboratory request slips. A laboratory is located in Suite I and you can have your lab work done while waiting to see the doctor.

On Tuesday morning report to the reception area and sign in on the Transplant clinic “Sign In sheet” located at the reception desk. You will be directed to the outpatient laboratory for your blood work.

Because you will have a Cyclosporine (Neoral) or Prograf (FK506) level drawn at each clinic visit DO NOT TAKE YOUR CYCLOSPORINE (NEORAL) OR PROGRAF (FK506) UNTIL AFTER YOUR BLOOD SAMPLES HAVE BEEN TAKEN. As soon as you are finished in the laboratory you can take your medication. TAKE ALL YOUR OTHER MEDICATIONS AS YOU NORMALLY WOULD AND BRING YOUR CYCLOSPORINE (NEORAL) OR PROGRAF (FK506) WITH YOU SO YOU CAN TAKE IT IMMEDIATELY AFTER YOUR BLOOD IS DRAWN.

You may eat a full breakfast and drink fluids as you normally would prior to coming to clinic. It is not necessary to come in fasting unless you are specifically directed to do so.

When you are called, obtain your outpatient chart from the Transplant Coordinator who will be in the clinic.

You will be called by the nurse to have your temperature, weight and blood pressure taken before seeing the doctor. The nurse will need your outpatient chart to record the readings obtained. When this has been done, have a seat in the waiting room. You will be called to see the doctor based on your time of arrival.

After seeing the doctor, take your chart to the reception desk. After you receive your appointment for your next visit you are free to leave.

We know you are most anxious to receive the results of laboratory tests taken during your clinic visits. If the doctor identifies any problem with any of your test results or wishes you to make any medication changes, you will be notified by the Transplant Coordinator. If you are curious and would like to know your results, please feel free to call the transplant office on the day after your clinic appointment. Your cooperation regarding when to call for your test results will be greatly appreciated.

REMEMBER CLINIC STARTS AT 8:15 ON THURSDAY MORNINGS

Long Term Follow Up

We recognize the long standing relationship that you have developed with your Nephrologist (kidney doctor) and you will continue to be followed by him or her in the long term after your transplant.

Soon after discharge from the hospital you are advised to schedule an appointment with your Nephrologist for the first time after transplant. At that time he or she will review your transplant information and plan long-term follow up with you. We will see you in the transplant outpatient clinic for the first three months after transplant or until your kidney function is completely stable and will work closely with your Nephrologist in planning your long term care.

Each time you see your Nephrologist we must have a copy of your lab results sent to the transplant office for our records. We will of course send a copy of your lab results to your Nephrologist for their records. We must be informed of any changes in your anti-rejection medications (Cyclosporine, Prograf, Imuran, Prednisone). Once you have stable kidney function and are being seen regularly by your Nephrologist, we would like to see you once every year to review your progress in detail. Please call the clinic area to schedule an appointment (718)270-1855.

Should you develop a rejection episode at any time please call the transplant office so we can arrange treatment together with your Nephrologist.

The Transplant Coordinators and Transplant Surgeons will be happy to answer any questions you may have and assist you through this long term follow up period.

QUESTIONS AND ANSWERS

Q — How long will it be before my stitches are removed?
A — Usually about two weeks. This is to be sure that all layers of skin are healed.

Q — How much weight can I lift without hurting the kidney? A — You should avoid heavy lifting (more than 15 pounds), bending or straining for approximately three (3) months after your transplant.

Q — When will I be able to return to work?
A — This depends on how you feel and the type of work you do. You should be able to return to work six to eight weeks after your transplant.

Q — When will I be able to drive a car?
A — Usually after three (3) weeks. Be sure to always wear your seat belt even if it is over the kidney.

Q — When can I begin an exercise program? What exercises are best?
A — You should begin walking 10-15 minutes every day after discharge from the hospital. Avoid using an exercise or walking bike for about three (3) weeks after surgery, and avoid strenuous exercises such as jogging for about six (6) weeks after surgery. As a transplant recipient you should not participate in contact sports such as football or rugby as there is a risk of injuring the kidney. Walking, bicycling and swimming are excellent forms of exercise for transplant recipients after the initial three (3) to six (6) week period.

Q — When can I resume sexual activity?
A — After two (2) to three (3) weeks depending on how you feel. Try different positions if you have pain over your incision. Always practice safe sex. Women should avoid pregnancy for at least one year after transplant.

Q — How will I know if I am having a rejection episode?
A — Rejection episodes can be very obvious or may be completely unnoticeable. Most commonly, you will have an increase in your creatinine level without any other noticeable signs or symptoms. Rarely, you may have a decreased urine output, fever, weight gain or pain over the kidney. Your creatinine will be checked each time you have your blood drawn. While rejection is always possible after transplant, if you perform the self checks which you were taught and keep your scheduled clinic appointments, any rejection episodes will be picked up early and treated quickly.

Q — How often must I come to clinic for check-ups?
A — Twice a week for about one month. Your visits will be tapered to once per month by about six (6) months.

Q — What if I cannot make it to a scheduled clinic appointment?
A — You must call the clinic to reschedule the appointment. The clinic phone number is (718)270-1855.

Q — What if I get sick before my scheduled appointment?
A — Call the Transplant Coordinator. She will discuss the problem with you and advise you as to what to do. If you need to be seen by the Transplant Surgeon she will arrange it.

Q — How long must I take the anti-rejection medications?
A — You must take the medications exactly as prescribed for as long as you have the kidney. The types or doses of medications may be changed, but without these medications your body will reject the kidney.

Q — What about the new anti-rejection drugs I have heard about? Are they better than the ones I am taking?
A — While research is always being done to find the perfect anti-rejection medication, the drugs you are taking, while not perfect, are the safest and most effective drugs known to prevent rejection.