NKF: Care After Kidney Transplant

Introduction

The long term success of a kidney transplant depends on many things. You should:

  • Be seen by your transplant team on a regular basis and follow their advice
  • Take your anti-rejection medications daily in the proper dose and at the right times, as directed by the transplant team, to keep your body from rejecting your new kidney.
  • Follow the recommended schedule for lab tests and clinic visits to make sure that your kidney is working properly.
  • Follow a healthy lifestyle including proper diet, exercise, and weight loss if needed

Rejection and Transplant Medicine

What is rejection?

Rejection is the most common and important complication that may occur after receiving a transplant. Since you were not born with your transplanted kidney, your body will think this new tissue is “foreign” and will try to protect you by “attacking” it. Rejection is a normal response from your body after any transplant surgery. You must take anti-rejection medicine exactly as prescribed to prevent rejection.

Are there different types of rejection?

There are two common types of rejection:

  • Acute Rejection – Usually occurs anytime during the first year after transplant and can usually be treated successfully.
  • Chronic Rejection – Usually occurs slowly over a long period of time. The causes are not well understood and treatment is often not successful.

What are anti-rejection medications?

Anti–rejection (immunosuppressant) medications decrease the body’s natural immune response to a “foreign” substance (your transplanted kidney). They lower (suppress) your immune system and prevent your body from rejecting your new kidney.

Why do I need to take anti-rejection medication?

Kidney rejection is hard to diagnose in its early stages. Rejection is often not reversible once it starts. You should never stop taking your anti-rejection medication no matter how good you feel and even if you think your transplanted kidney is working well. Stopping or missing them may cause a rejection to occur.

How should I take anti-rejection medication?

Here are some tips to help you take your anti-rejection (immunosuppressant) medication as directed:

  • Make taking your medicine part of your daily routine
  • Use digital alarms and alerts to remember when to take your medication. Be creative because it is easy to forget, especially once you are feeling well
  • Know all of your medications by name and dose. Know the reason for taking each medication. Click here for form.
  • Ask for and review all written instructions for any change in medication dose or frequency
  • Tell your transplant team of problems and concerns about medications during every clinic visit
  • If a doctor other than a member or your transplant team gives you a prescription, notify the transplant team before taking. Certain medications can interfere with your anti-rejection medications and keep them from working.
  • Continue to take your anti-rejection medication no matter how great you feel, even if you think your transplanted kidney is working well. Stopping them may cause rejection to occur.

Do anti-rejection medications have side-effects?

Anti-rejection (immunosuppressant) medications have a number of possible side-effects which are usually manageable for most patients. Blood levels of anti-rejection medications will be checked regularly to prevent rejection and lessen side-effects. If side-effects do occur, your doctor may change the dose or type of medications.

What are the side-effects of anti-rejection medications?

Some of the most common side-effects of anti-rejection (immunosuppressant) medications include high blood pressure, and weight gain, an increased chance of having infections, and increased risk of some forms of cancer.

What are the types of anti-rejection medications?

There are 3 groups of anti-rejection (immunosuppressant) medications:

  • Induction agent – Powerful anti-rejection medication used before the transplant in the operating room, or immediately after the transplant surgery
  • Maintenance agents – Anti-rejection medications you will take daily for as long as you have your transplanted kidney
  • Rejection agents: Medications which are used for the treatment for rejection episodes

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Infection

Why is infection a concern after kidney transplant?

The anti-rejection medicines that help keep your body from rejecting your transplanted kidney also lower your immune system. Because your immune system is lowered, viral and other infections can be a problem.

What is the best way to stay healthy?

Finding and treating infections as early as possible is the best way to keep you and your transplanted kidney healthy. Exposure to diseases such as the flu or pneumonia can make you very sick. Receiving vaccines as determined by your transplant team can help you stay healthy. It is also important to frequently wash your hands or use an antimicrobial gel during cold and flu season.

What problems should I report to my doctor?

You should report any of the following problems to your doctor as soon as possible:

  • Sores, wounds, or injuries; especially those that don’t heal
  • Urinary tract infection symptoms such as frequent urge to urinate, pain or burning feeling when urinating, cloudy or reddish urine, or bad smelling urine
  • Respiratory infection symptoms such as cough, nasal congestion, runny nose, sore or scratchy throat, or fever

How can I avoid getting infections?

To avoid getting infections you should:

  • Wash your hands regularly
  • Maintain good hygiene habits especially around pets
  • Avoid close contact with people who have contagious illnesses
  • Avoid close contact with children recently vaccinated with live vaccines (see section on Vaccines). Also, no one in the household should get the nasal influenza vaccine
  • Practice safe food handling. For more information on safe food handling go to USDA: Basics for Handling Food Safely
  • Inform your doctor well in advance of any travel plans

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Vaccines

Can a vaccine be harmful after kidney transplant?

Vaccines help your body protect you from infection. Some vaccines are not good for you when you have a transplant. For example, you should avoid all “live vaccines.” Check with your transplant team before receiving any vaccines or boosters.

What are some general rules for getting vaccines such as Hepatitis B, live vaccines, or a flu shot?

You should:

  • Get Hepatitis B vaccine before transplant
  • Avoid all live vaccines
  • Avoid the nasal influenza vaccine
  • Wait at least 3-6 months after transplant before getting a flu shot; then get a yearly booster (injection only)

What if someone I know receives a live vaccine?

You should avoid direct contact with anyone who has received a live vaccine. Examples include:

  • Children who have received oral polio vaccine for 3 weeks
  • Children who have received measles or mumps vaccines
  • Adults who have received attenuated (a-TEN-yoo-ated) varicella vaccine to prevent zoster (attenuated means weaker strength)
  • Children or adults who have received the nasal influenza vaccine

 

What if I travel to another country?

Contact your transplant physician if you plan to travel to another country. You may need to receive certain vaccines to prevent diseases that are common to the area.

Which vaccines are safe to get?

Always talk to your transplant coordinator before getting any vaccines or boosters. The following vaccines are recommended:

  • Diphtheria-pertussis-tetanus
  • Haemophilus influenzea B
  • Hepatitis A (for travel or other risk)
  • Hepatitis B (receive before transplant)
  • Pneumovax (single booster at 5 years)
  • Inactivated polio
  • Influenza types A and B (booster every year)
  • Meningococcus (if at high risk)
  • Typhoid Vi

Which vaccines should I avoid?

You should NOT receive the following “live” vaccines:

  • Varicella zoster
  • Bacillus Calmette-Guerin (BCG)
  • Smallpox
  • Intranasal influenza
  • Live oral typhoid Ty21a and other newer vaccines
  • Measles (except during an outbreak)
  • Mumps
  • Rubella
  • Oral polio
  • Live Japanese B encephalitis vaccine
  • Yellow fever

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New-Onset Diabetes After Transplant

What is new-onset diabetes after transplant or NODAT?

Even if you did not have diabetes before, you may develop diabetes after transplant. This type of diabetes is called new-onset diabetes after transplant or NODAT. This can occur as a side effect of the medications that you need to prevent rejection of your new kidney.

What are my chances of having new-onset diabetes after transplant?

Your chances of having new-onset diabetes after transplant will be higher if you are obese. Your chances are also increased if others in your family have diabetes.

Why should I worry about diabetes?

Having a high blood sugar level due to diabetes or due to NODAT can cause serious damage to your heart, blood vessels, eyes, feet, and nerves.

How can I find out about my blood sugar?

Blood sugar levels will be closely watched while you are in the hospital after the transplant and in the outpatient clinic. If needed, your doctors will help you develop a plan to keep your blood sugar under control. If you are on corticosteroid medication (such as prednisone), your blood sugar levels will improve as the dose of this medication is decreased in the first 2 months after transplant.

If I have diabetes, how can I control my blood sugar?

Your transplant team will help you manage your blood sugar. High blood sugar is usually done with:

  • A carbohydrate-controlled diet
  • Exercise, as allowed by your doctor
  • Diabetes medications

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Heart Disease

What are my chances of getting heart disease after a kidney transplant?

A: People with kidney transplants are at greater risk for heart disease. There are many causes for heart disease including: smoking, diabetes, overweight, hypertension, high cholesterol and blood lipids, and number of years on dialysis.

How can I lower my chances of getting heart disease?

A: Here are some important things for you to do now to lower your chances for getting heart disease later (see information on each topic):

  • Control high blood pressure
  • Manage cholesterol and blood lipids
  • Stop smoking
  • Exercise, as allowed by your doctor
  • Maintain a healthy weight by following a healthy diet
  • If you have diabetes, work to keep it well controlled

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High Blood Pressure

What are my chances of having high blood pressure after a kidney transplant?

If you had high blood pressure before getting your new kidney, it may continue after your transplant. High blood pressure might also occur as a side-effect of anti-rejection medications, organ rejection and/or obesity (from weight gain after transplant).

Should I check my blood pressure?

You should check your blood pressure as directed by your transplant team. The target blood pressure for people with a kidney transplant is less than 130/80.

How can I control my blood pressure?

Your doctor will help you manage your blood pressure. High blood pressure is usually controlled with:

  • Weight control including regular exercise
  • A low salt diet
  • Blood pressure medication

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High Cholesterol and Blood Lipids

What are my chances of having high cholesterol and blood lipids after kidney transplant?

Many people may have higher cholesterol and lipid levels in the blood after transplant due to medication side-effects , weight gain, poor diet, family history, or lack of exercise. Kidney-related issues that cause protein in the urine (proteinuria) can also increase blood lipids.

Why should I worry about high cholesterol and blood lipids?

High blood lipids can lead to clogged blood vessels. When this occurs it increases risk of heart disease and stroke.

How can I control my cholesterol and blood lipids?

Your doctor will help you manage your cholesterol and blood lipids. Controlling high cholesterol and blood lipids is usually done with:

  • A heart healthy diet
  • More exercise as allowed by your doctor
  • Lipid lowering medication

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Stop Smoking

Why should I stop smoking?

moking cigarettes significantly increases your risk for heart disease, cancer and lung disease. It may also decrease the amount of time your new kidney will work.

How can I get help to stop smoking?

Ask your doctor about medication to help you quit smoking if you are having a problem quitting on your own. Also ask your transplant team about programs in your area. There are also online programs and Apps you may want to try. Here are some examples:

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Healthy Weight

What are my chances of gaining weight after kidney transplant?

It is very likely that you will gain weight after your kidney transplant. Weight gain after transplant is common due to medication side-effects and a less strict diet (as compared to the diet for dialysis).

Why should I worry about gaining too much weight?

Gaining too much weight can lead to having too much total body fat. This is known as obesity. Obesity increases the risk of heart disease and new-onset diabetes after transplant (NODAT).

How can I keep a healthy weight?

Your transplant team will include a dietitian. Your doctor and dietitian will help you develop a plan to keep a healthy weight. To control weight, work with your dietitian to:

  • Reduce calories
  • Exercise regularly as allowed by your doctor

If I have Medicare, can I ask my doctor for a Medical Nutrition Therapy referral to see a registered dietitian?

Medicare covers Medical Nutrition Therapy services prescribed by a doctor for patients with diabetes or chronic kidney disease, and includes transplant patients. The services provided by a registered dietitian include:

  • An initial assessment of your nutrition and lifestyle
  • Nutrition counseling
  • Information on managing lifestyle factors that affect your diet
  • Follow-up visits to check progress on managing your diet

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Cancer

Q: What are my chances of getting cancer after a kidney transplant?

Your chances are greater than those without a transplant. The immune system is very important to keep your body from getting cancer. Anti-rejection (immunosuppressive) medications decrease your immune function and may decrease the body's defenses for certain types of cancer. There are things that you can do to lower your chances of getting cancer.

How do I know if I am at increased risk for skin cancer?

Skin cancer is the most common type of cancer and can cause death. If you have fair skin, live in a high sun exposure area or have a history of skin cancer you may have a higher chance for getting skin and lip cancer. There are also certain anti-rejection medication that may increase your risk more than others.

How can I lower my chances of getting skin cancer?

To lower your chances of getting skin cancer you should:

  • Avoid direct sunlight
  • Avoid tanning booths
  • Wear UVA and UVB sunscreen protection
  • Be aware of any changes in your skin. Preform self-examines of your skin and lips regularly. Tell your doctor if you notice a strange lump, bump, sore, ulcer, or colored area on the skin
  • Follow the advice of your transplant team and kidney doctor for further skin care. Your doctor may recommend going to a dermatologist (skin doctor) for a yearly exam

What other cancer screening should I talk to my doctor about?

Women – Discuss risk of cervical, breast and colon cancer with your doctor regularly and keep up with recommended exams
Men – Discuss risk of prostate and colon cancer with your doctor regularly and keep up with recommended exams

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Bone Disease

What are my chances of having bone disease after kidney transplant?

Bone disease (also known as chronic kidney disease-mineral and bone disorder or CKD-MBD) may continue even after your kidney transplant. CKD-MBD occurs due to medication side-effects, previous kidney disease, diabetes, smoking, lack of exercise, menopause, or number of years on dialysis.

Why should I care about bone disease?

Bone disease can cause weak and brittle bones and increase your chance for fractures.

How can I find out if I have bone disease?

To check your bone health your doctor will test your blood levels of calcium, phosphorus, parathyroid hormone (PTH) and vitamin D.

How can I lower my chances of having bone disease?

Weight bearing exercise such as walking, biking and using weights is a good way to increase bone and muscle strength. If your blood level of vitamin D is low your doctor may prescribe a vitamin D supplement.

Can I take bone density medications?

Bone density medications are not commonly used after kidney transplant. If your doctor suggests this option a bone biopsy may be needed to check your bone health before starting this medication.

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Anemia

What are my chances of having anemia after a kidney transplant?

Following a kidney transplant you may have anemia (low red blood cell count) due to the surgery, medication side-effects, infection, abnormal breakdown of red blood cells, or organ rejection. Blood pressure medication can cause your body to make fewer red blood cells.

Why should I care about anemia?

Mild anemia can cause minor problems like feeling tired and having pale skin. If left untreated, anemia can cause a lack of oxygen to organs and lead to serious health problems such as heart failure.

What should I do if I have anemia?

If you have anemia your doctor may prescribe an iron supplement or other medications. There are many choices for iron pills; if you do not tolerate one iron supplement, ask about other choices. Your doctor will work with you to decide on the best treatment. It is also important to eat a healthy diet.

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Gout

What is gout?

Gout is a condition that occurs when high blood uric acid levels cause crystals to build up in the joints, causing painful swelling.

What are my chances of having a high blood uric acid level (hyperuricemia) after kidney transplant?

Your body may have a hard time getting rid of uric acid (a normal waste product in blood) after your kidney transplant. This is often due to side-effects from medications, such as cyclosporine, leading to a high uric acid level in blood.

What do I do if I have high blood uric acid levels or gout?

Your doctor will help you manage high blood uric acid levels or gout. This is usually done with:

  • Medication (avoid non-steroidal anti-inflammatory drugs (NSAIDS) whenever possible)
  • A diet that limits certain foods and beverages including red meat, seafood, sugared soft drinks and alcohol (especially beer)
  • Keeping a healthy weight
  • Controlling high blood pressure, high blood lipid levels and diabetes, if present

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Sexual Activity and Fertility

What happens to sexual function after kidney transplant?

Most sexual functions return after a successful transplant if the problem was due to kidney disease or dialysis. You and your spouse or significant other should talk to your transplant team about any problems with sexual function, or if you have questions about safe sex, contraception or pregnancy.

If I am a woman of child bearing age, can I become pregnant after kidney transplant?

Women of child bearing age should consult with their transplant physician regarding pregnancy and/or contraception. If you are thinking about becoming pregnant, talk to your transplant team. Before becoming pregnant you should:

  • Wait at least 1 year after your transplant
  • Wait until your kidney function is stable
  • See an obstetrician who specializes in high risk pregnancies
  • Learn about the risks and benefits of breastfeeding. If you are interested in breastfeeding, it is very important to discuss the medications you are taking with your obstetrician. Some medicines can be passed on through your breast milk and can be harmful to your baby.

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Mental Health

What if I feel anxiety or depression after kidney transplant?

Anxiety and depression are common following kidney transplant. You may even become overwhelmed because of all the new things and changes that are happening to you following your transplant. This is a normal feeling for some transplant recipients.

What are the causes of depression and anxiety?

Depression and anxiety may be due to prior health problems, sleep disorders, or stress from the transplant itself. For example, it is normal to worry about the health of the living donor or the tragedy the deceased donor’s family felt. Some anti-rejection medications may also cause depression or mood swings until the dose is decreased.

What should I do if I feel anxiety or depression?

Discuss these issues with your transplant team to determine if treatment is needed. They can plan the right treatment for you to help you through this period.

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Healthy Lifestyle

Why is a healthy lifestyle important after kidney transplant?

A healthy lifestyle is important for many reasons. Many conditions such as new onset diabetes after transplant (NODAT), high cholesterol, and high blood pressure can be improved through living a healthy lifestyle. A healthy lifestyle also helps bring about a feeling of wellness.

How do I follow a healthy lifestyle?

Your transplant team will help you make the right choices to develop and live a healthy lifestyle. You should:

  • Return to your normal routine, such as work, school or housework.
  • Increase physical activity with regular exercise. Check with your doctor before you start an exercise program.
  • Eat a proper diet. A dietitian can help you make the right heart healthy food choices for a healthy lifestyle.
  • Lose weight, as needed, to reach and maintain a healthy weight. Consult with your dietitian and transplant team for a healthy weight loss diet. Fad diets should be avoided. Once you get to your healthy weight you will feel better.

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Patient Assistance Programs

What if I have Medicare and need help paying for my transplant medications?

If you have Medicare and are having trouble paying for your prescriptions there is extra help available. You should apply for “Extra Help” with Medicare Prescription Drug Plan Costs through the Social Security Administration. Learn more and apply online. Or call Social Security at 1-800-772-1213 or visit your local social security office.

Are there any other prescription assistance programs?

Yes, here are some websites that allow you to search for prescription assistance programs by medicine:

The Partnership for Prescription Assistance or call at 1-888-4PPA-NOW (1-888-477-2669)

  • Helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free.
  • Good search tool when looking for prescription assistance programs.

RxAssist Patient Assistance Program Center

RxAssist can help you learn about ways to use pharmaceutical company programs and other resources to help reduce your medication costs.

 

Needy Meds

 

This program helps people obtain prescription assistance and offers a discount card for those eligible. It can help people save up to 80% on the cost of their medications.

Do drug companies offer prescription assistance programs?

Yes, many drug companies offer prescription assistance programs for their medications to those who qualify. Click here to see some common medications and companies for kidney transplant.

Do any states offer prescription assistance programs?

Yes. Check with your transplant social worker to see if your state offers a prescription assistance program and to see if you qualify.

 

How can I find out about other community resources and medication assistance programs?

Call NKF Cares, sponsored by the National Kidney Foundation. This patient hot line offers help for people affected by kidney disease, or those with questions on organ donation or transplantation. Speak with a trained professional who will answer your questions and listen to your concerns. Call toll-free at 1-855-NKF-Cares (1-855-653-2273).

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More Information

Where can I get more information about care after kidney transplant?

To learn more about care after kidney transplant, contact the National Kidney Foundation (NKF) at 800.622.9010 or visit www.kidney.org. You may be interested in the following NKF booklets

Transplant Chronicles is a quarterly e-newsletter for transplant patients. Click here for more information

Are there other organizations I can contact for information about care after kidney transplant?

Yes, you may also want to visit the following websites:

The National Kidney Foundation’s transAction Council

Transplant Living – a service of the United Network for Organ Sharing

The American Society of Transplantation

Scientific Registry of Transplant Recipients

The Minority Organ Tissue Transplant Education Program

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Definitions

Anemia – Low red blood cell count

Attenuated – Weaker or lower strength

Bone biopsy – Used to diagnose bone disease by taking a small sample of bone from the body and looking at it under a microscope

CKD-MBD (Chronic kidney disease bone and mineral disorder) – Disease that affects the bones and blood vessels

Corticosteroid – A type of medication used to treat inflammation

Gout – A conditions that occurs when high blood uric acid levels cause crystals to build up in the joints, causing painful swelling

GFR (Glomerular filtration rate) – A measure of kidney function

Heart healthy diet – A diet low in fat, cholesterol and sodium

Hepatitis B (HepB) – A disease that causes irritation and swelling of the liver

Hyperuricemia – High uric acid level in blood

Immunosuppressants – Medications to help prevent transplant rejection

Lipids – A fatty substance than can build up in blood

NODAT (New onset diabetes after transplant) – Diabetes that develops after a transplant

NSAIDS (non-steroidal anti-inflammatory drugs – A type of medication used to treat inflammation and mild to moderate pains. NSAIDS are harmful because they reduce blood flow to your transplanted kidney. You should avoid NSAIDS

Obesity – Having too much total body fat

Obstetrician – A medical doctor who offers a variety of women's health services and specializes in the management of pregnancy, labor, and birth.

Proteinuria – Protein in the urine

UVA and UVB (Ultraviolet radiation) – Radiation from sunlight that can cause skin cancer

Varicella zoster – Herpes virus that causes chicken pox and Herpes zoster (shingles)

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If you would like more information, please contact us.

© 2014 National Kidney Foundation. All rights reserved. This material does not constitute medical advice. It is intended for informational purposes only. Please consult a physician for specific treatment recommendations.