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Your Care After Heart Transplant

 

♥ Medications

 

These are key points to keep in mind.

 

  • Choose one drug store to fill your prescriptions.  This permits the pharmacist to keep a complete record of your drugs.  It also helps them to better watch for drug interactions and adverse effects.  This will make it easier to ensure that your drugs are in stock and ready for you each month.

 

  • Be careful not to run out of your drugs.  Refill your prescriptions before you start running too low.  Plan ahead for weekends, holidays, and vacations.

 

  • Be sure to look at the dose of your pills.  This is noted on the pill bottle when you receive them.  Know the dose you are to take rather than the number of pills.

 

  • Keep a list of all your medicines with you.  Be sure to bring the list of all your drugs with you any time you come to the hospital.

 

  • Your doctor will want to watch how you are doing on your medications.  It is vital to keep all follow-up appointments for check-ups and blood tests.

 

  • Take all the medicines prescribed by your doctor.

 

  • Never increase or decrease a drug dose without being told to do so.

 

  • If you miss a dose of your medicine, take the missed dose as soon as you can.  Then, resume your normal dosing schedule.  If it is almost time for the next dose, skip the missed dose and return to your regular schedule.  Never take a double dose or extra doses.

 

  • Talk with your transplant coordinator and your pharmacist if you or your local doctor feels that you need an extra drug (prescription, natural product, supplement, vitamin, over-the-counter).  They can ensure that there will be no interactions with your transplant drugs and the new drug.

 

  • Many medicines have a number of side effects.  If you have any of these, discuss this with your doctor or coordinator before stopping or changing your medicine.

 

  • Call 911 if you ever have signs of a life-threatening reaction such as:
    • Difficult breathing.
    • Hives.
    • Swelling of the face, lips, tongue, or throat.

 

  • Store your drugs at room temperature unless told otherwise by your coordinator.  Keep them out of light and away from moisture.  Do not store drugs in the bathroom.

 

  • Keep your drugs in their original bottles and tightly closed.  Keep all drugs away from children and pets.

 

  • Do not share your medicine with others.  Do not take anyone else’s medicine.

 

  • Wear a medical alert bracelet that lists the transplant drugs you take.  In case of an emergency, this would tell health care workers what you are taking.

 

Cyclosporine (anti-rejection)

 

  • This is taken twice daily (every 12 hours) to prevent rejection.
  • There are many brands of this drug.  Do not switch between brands without your doctor or coordinator’s consent.

 

This is used with other immunosuppressant drugs to prevent rejection of your new organ.  You will be taking either cyclosporine or tacrolimus.  Cyclosporine comes in 25mg and 100mg gel capsules in a foil wrap.  The foil packages can be opened up to seven days before you use it.  Some patients find that the capsules fit into their pill boxes better if they are out of the package.  This will also lessen the smell of the capsules.  Hand tremor, high blood pressure, and high blood sugar are the most common side effects of this drug.  You will have your cyclosporine level checked with a blood draw on a regular basis.  Your dose may be changed by your coordinator based on lab results.  The cyclosporine blood level is always drawn before your dose is taken for that day.  There are many drugs that interact with cyclosporine.  Always check with your coordinator before starting or stopping any drug.


Tacrolimus (anti-rejection)

 

  • This is taken twice daily (every 12 hours) to prevent rejection.
  • This drug is better absorbed on an empty stomach.  It can be taken with food if you have stomach upset.  Take this drug the same way, with or without food, each day.

 

This is used with other immunosuppressant medicines to prevent rejection of your new organ.  You will be taking either tacrolimus or cyclosporine.  Tacrolimus comes in 500mcg, 1mg, and 5mg capsules.  Hand tremor, high blood pressure, and high blood sugar are the most common side effects.  You will have blood drawn to check your drug level on a regular basis.  Your dose may be changed by your coordinator based on your lab result.  The tacrolimus blood level is always drawn before your dose is taken for that day.  Do not take this drug within 2 hours before or after antacids.  These can limit absorption of the drug.  Many drugs interact with tacrolimus.  Always check with your coordinator before starting or stopping any drugs.

 

Mycophenolate Mofetil and Mycophenolate Sodium (anti-rejection)

 

  • This comes in two forms, mycophenolate mofetil and mycophenolate sodium.
  • Your transplant team will choose the form of the drug that you will use.
  • You take this twice daily (every 12 hours) to prevent rejection.
  • Avoid taking antacids, iron, calcium supplements, and multivitamins at the same time as your mycophenolate.  Take these drugs at another time of day.

 

This is used with other immunosuppressant medicines to prevent rejection of your new organ.  Mycophenolate mofetil comes in 250mg capsules and 500mg tablets.  Mycophenolate sodium comes in 180mg and 360mg tablets.  Nausea, vomiting, and diarrhea are the most common side effects.  You will have blood drawn to measure blood cell counts and sometimes to measure blood concentrations.  Your coordinator will tell you how often and when you need to have your blood drawn. 


Prednisone (anti-rejection)

 

  • This is taken daily to prevent rejection.
  • The dosage will taper slowly over the months after your transplant.

 

This is used with other immunosuppressant drugs to prevent rejection of your new organ.  Prednisone comes in many tablet sizes.  Most often, 5mg tablets are used.  Take this drug with food to reduce stomach pain.  Prednisone can increase blood sugar.  Some patients need to take insulin or oral diabetes medicine when taking this drug.  High blood pressure is also a common side effect.  Patients taking prednisone may also go through mood changes and changes in skin texture.  Long-term therapy may weaken bones leading to osteoporosis.

 

Trimethoprim/sulfamethoxazole (TMP/Sulfa) (anti-infection)

 

  • This is an antibiotic.
  • You should not take this drug if you are allergic to sulfa.

 

This is a drug to help prevent Pneumocystis carinii pneumonia (PCP).  PCP is an infection that may occur when patients are taking medicines that suppress the immune system in order to prevent rejection.  The dosage is either one double strength (DS) tablet daily, or one DS tablet three times a week.  This will depend on your kidney function.  It is best to take this drug on an empty stomach, one hour before or two hours after eating.  This drug may make your skin sensitive to the sun.  It is vital to wear suntan lotion (SPF 30 or higher), a hat, long sleeves, and long pants when outside.  Common side effects include rash, upset stomach, and loss of appetite.

 

Valganciclovir(anti-viral)

 

  • This is used to prevent viral infections.
  • Take this drug with food or milk.
  • Do not crush or break these tablets.

 

This drug is used to help prevent Cytomegalovirus (CMV) in transplant patients.  It should be taken with food or milk.  Tablets should not be crushed or broken.  Valganciclovir comes in 450mg tablets.  The usual dosage is 900mg or two tablets daily.  You will have blood drawn often to check blood cell counts and kidney function.  Common side effects are headache, diarrhea, upset stomach, stomach


pain, fatigue, and having trouble sleeping.  Many small meals, sucking on hard sugar-free candy, or chewing sugar-free gum can help relieve stomach symptoms.

 

You may be on acyclovir, 400mg twice daily instead of valganciclovir.  Your doctor will decide which drug is best for you.

 

Notes

 

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♥ Vital Signs

 

  • How often do I need to check my vital signs?
  • When do I need to call my coordinator?

 

You will need to record

  • Blood pressure
  • Pulse
  • Temperature
  • Respirations
  • Weight

 

You will need to check and record these numbers three times a day.  This should be done when you get up in the morning, at noon, and before bed.  You will be given an automatic blood pressure cuff.  This will check your blood pressure and pulse.  You will also get an oral thermometer to check your temperature.

 

You will need to weigh yourself at the same time each morning.  This should be written down along with your vital signs.  Be sure to call your coordinator if you gain or lose more than 3-5 pounds in 5 days.

 

Bring your vital signs and diabetes log books to each of your follow-up visits.  The doctor will look for trends in your numbers.  Changes to your medicines may be made based on your numbers.

 

When to call your coordinator

 

Blood Pressure

  • Top number (systolic) is over 140 or under 90.
  • Bottom number (diastolic) is over 100 or under 50.
  • If you do get a high or low reading, wait a few minutes, recheck your blood pressure.  Call if the reading is still high or low.
  • Keep in mind that it is common for blood pressure to be higher in the morning.

 

Pulse

  • Your heart rate is higher than 120 or abnormal.
  • If you feel a racing or pounding in your chest.

Temperature

  • If your temperature is more than 3° above what you normally run.
  • Anytime, your temperature is over 100.4° for more than 4 hours.
  • Do not take any drugs to lower your fever.  This can mask symptoms of infection or rejection.
  • Check your temperature anytime you feel like you may have a fever.

 

Respirations

  • If you feel short of breath or are having trouble breathing.

 

♥ Diabetes

 

  • What can cause this?
  • What will be done if my blood sugar levels are high?

 

High blood sugar levels can occur if you start to take certain drugs such as steroids.  Even though your body still makes insulin, these drugs prevent the insulin from working well enough to keep blood glucose levels normal.  Drugs that may raise sugar levels are:

  • Prednisone or other steroids
  • Tacrolimus
  • Cyclosporine

 

Some people have high blood glucose levels only when taking these drugs.  Others may still need to check blood glucose levels after the drugs are stopped.  Only time will tell how long you will need to keep checking your blood sugars.

 

Normal blood sugar levels are 70 – 100 mg/dL when fasting and before meals.  The normal levels after meals are 70 – 140 mg/dL.  Keeping blood glucose levels as close to normal as you can will promote healing and prevent infection.  You will feel better and have more energy when your blood glucose levels are normal.

 

If you have diabetes, you will need to check and record your blood sugar 4 times a day—before each of your three meals and before bed.  You can record these numbers with your vital signs or in a diabetes log book.  If needed, a nurse will teach you about diabetes, how to check your blood glucose levels, and how to give yourself insulin.


♥ Biopsy Results

 

  • What is a biopsy?
  • Why are biopsies done?
  • When will I have a biopsy?
  • What happens if a biopsy shows rejection?

 

Biopsies are done at scheduled times after your transplant.  Your schedule may be:

  • Every week for 4 weeks
  • Every two weeks for 8 weeks
  • Every 4 weeks for 16 weeks
  • Every 6 weeks for the rest of the first year
  • Every 6 to 12 months after that

 

Your coordinator will give you a schedule for your biopsies before you go home.  This schedule may change.  More biopsies may be needed if rejection is suspected.

 

During a biopsy, tiny pieces of heart tissue are taken from your heart.  They are studied under a microscope.  Each is checked for signs of inflammation and cell breakdown.  These signs suggest that rejection may be occurring.  Based on these findings your biopsy is graded from 0 to 3.  Tests results are available late the next day.  The results do not depend on the doctor doing the test or the technique being used.  An international standard is used to evaluate and grade the biopsy.

 

Biopsy Grades

 

Grade 0:      No rejection

Grade 1:      Mild, Low-grade rejection

Grade 2:      Moderate, Intermediate-grade rejection

Grade 3:      Severe, High-grade rejection

 

A biopsy of Grade 2 or higher needs treatment.  This may include high dose intravenous (IV) steroid therapy in the hospital or you may be treated at home with a high dose of oral prednisone.  An increase in your other immunosuppressant medicines may also be made.  The doctors will decide if it is safe to treat you at home or if they need to admit you to the hospital.  Another biopsy will be done in 4 to 6 weeks to see if the treatment worked.


 

With each biopsy you will also have lab work, a chest x-ray, and sometimes an echocardiogram.  There are times when we need lab work done between biopsies.  We will arrange for you to have these done at a local lab if you live outside of the Madison area.  Lab results tell us how your body is responding to your medicines.  Since you will not be able to drive for about 8 to 12 weeks after your transplant, plan to have someone bring you to your visits during that time.

 

Notes

 

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♥ Rejection

 

  • What is rejection?
  • When can this occur?
  • What are the signs of rejection?
  • What should I do if I have signs of rejection?

 

The risk of rejection is greatest the first 12 months after transplant.  It is common to have a rejection.  This is the body’s normal immune response to “foreign” tissue.

 

Your immune system is a special group of cells that protect your body from anything foreign.  When you have an infection these cells search out and destroy the germs.  Unfortunately, these cells view your transplanted heart as foreign.  This is called rejection.  Without your immunosuppressant drugs, these cells would be able to harm your new heart.  You need some immune system function to stay healthy.  These drugs do not fully take away your immune system.

 

There are three types of rejection.

  • Hyperacute
  • Acute
  • Chronic

 

Hyperacute rejection is very rare.  This occurs when your blood type or antibodies are not compatible with the donor organ.  Blood tests and blood typing are done to look for antibodies before transplant to prevent this type of rejection.

 

Acute rejection is the most common type of rejection.  This occurs at random times after your transplant.  It is found and confirmed by a heart biopsy.  An echocardiogram may also be done to see how well your heart is working.  The results from this test can also show if there is rejection.

 

Most people with a heart transplant have 1 to 2 rejection episodes.  These are the acute rejection type.  You are most at risk for this in the first three months after transplant.  The chances of rejection begin to drop in the second three months and then decrease sharply after that.  Despite this, there is always a chance for rejection.  The best thing you can do to prevent this is to take your medicine as ordered by your doctor.

 

 

Chronic rejection most often happens more than one year after transplant.  We watch for signs of chronic rejection for the rest of your life.  In order to watch for chronic rejection you will need to have yearly dobutamine echocardiograms and cardiac catheterizations.  These tests will be scheduled 6 months apart.  Six months after your transplant, you will have the dobutamine echocardiogram.  Six months later, on the anniversary of your transplant, you will have a cardiac catheterization. You will follow this pattern for the rest of your life.

 

Rejection may cause your heart to work less efficiently.  This can produce symptoms.  These are often the same symptoms of heart failure that you had before the transplant.  With the use of medicines we can reduce the immune system activity.  Doing this will reverse the rejection.

 

It is vital to be aware of the signs and symptoms of rejection.  Call your transplant coordinator right away if you have or feel any of these symptoms.

  • Short of breath
  • More tired than usual
  • Sudden weight gain
  • Irregular heart rhythm or palpitations
  • Sudden rise or drop in blood pressure
  • Lightheaded or dizzy
  • Low-grade fever (99° to 100° F) for 2 days
  • Nagging cough that lasts more than 2 days
  • Swelling or puffiness in the ankles or feet

 

Do not ignore these symptoms.  Call your transplant coordinator to discuss your concerns.  Timely diagnosis and treatment of rejection is crucial in protecting your new heart.

 

Notes

 

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♥ Infection

 

  • What should I do to watch for infection?
  • When and who should I call if I think I have an infection?
  • What can I do to prevent infection?
  • When do I have to wear a mask?

 

You will need to check for any lumps or thickened areas at least once a week.  A good time to do this is when you are in the shower.  Use your fingertips to check these spots.

  • Base of your neck
  • Top of your shoulders
  • Behind your ears
  • Under your arms
  • Pelvic or groin area
  • Men should also check
    • Testicles
    • Breasts (modified breast exam)
  • Women should also check
    • Cervical area
    • Breasts (complete breast exam)

 

Call your doctor or coordinator right away if you notice any lumps, thick, or tender spots that were not there before.

 

The drugs you take decrease the ability of your body to heal.  You are also prone to infection in cuts or other wounds.  Call your doctor or coordinator if you see any of these:

  • Sores
  • Blisters
  • Lumps
  • Wounds that are not healing
  • Wounds with
    • Abnormal pain
    • Redness
    • Drainage

 

You are always at risk for infection.  There are things you can do to help prevent this.


Good Hygiene

 

Wash your hands very often.  Wash after using rest rooms, before you eat, before you put on make-up or insert contacts.  Wash hands before and during making meals.

 

Wear a Mask

 

You need to wear a spore filter mask when you are in certain places.  These would include:

 

  • You are in hospitals, clinics, and laboratory areas.  These places have other ill patients.  These areas are often under construction.  You may have your mask off if you are in a private room with a hepa-filter.
  • You are working in a dusty environment or working with soil or mulch.  This would include gardening, yard work, farming,  construction work, cleaning very dusty rooms such as basements, attics, and garages.
  • You are flying.  Airplanes use re-circulated air during flights.  Anyone on the plane who is ill may be passing it on through the air.
  • You are in a large crowd in a poorly ventilated area.

 

You do not need to wear a mask if there is good air circulation, such as at concerts, church, movies, and outdoor activities. 

Gloves

 

Wear proper work gloves when working with dirty engines, in barns, in soil, mulch, or doing yard work.  If you fish, use a gripper glove.  This will prevent you from having direct contact with the slime and scales.  These can carry bacteria.

 

Plants and Flowers

 

Fresh cut bouquets can form mold in the standing water.  You can enjoy being in or around flower gardens.  It is okay to have potted plants at home.  If they need repotting or you are bringing in new plants, please have someone else pot them.  This should be done outside with good potting soil before bringing them inside your home.  New plants from the florist or garden center are mixed with vermiculite.  This holds lots of water and the plants can have higher amounts of mold.  This also holds true for plants such as Easter lilies and poinsettias.  If you want to have these live plants, you will need to have them repotted.


 

Pets

 

Pets are great to have in the family.  Talk to your coordinator before bringing any new pets into your home.  You should follow these guidelines.

 

  • Have all pets seen by a vet before bringing them into your home.
  • Do not change litter boxes or bird cages.  The waste can increase risk of infections.
  • Make sure your pets have regular check-ups.
  • Make sure your pets get all of their vaccines.
  • Wash your hands after petting or playing with any pet.

 

The anti-rejection drugs you will be taking after your transplant place you at risk for infection.  Even with taking all of the above precautions you will need to watch for signs and symptoms of infection.  These include:

 

  • Redness, tenderness, or open sores
  • Swelling
  • Pain
  • Fever – call with any temperature greater than 100.4°F.  Do not take any drugs for fever unless told to do so by your doctor or coordinator.
  • Fatigue
  • Odd colored drainage (yellow or green sputum or sinus drainage, cloudy urine, cloudy wound drainage, abnormal drainage from the penis or vagina.)
  • Rash
  • Headache that doesn’t go away
  • Stiff neck
  • Sores in mouth or on tongue
  • Swollen lymph nodes
  • Nausea, vomiting, or diarrhea

 

Notes

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♥ Incision Care

 

  • What will I need to do to care for my incision when I go home?
  • What do I need to do to protect my incision?

 

When you go home, you should shower with your back to the water.  Do not let the stream of water flow on your incision until it is fully healed.  Do not take any tub baths until your incisions are completely healed and there are no scabs.

 

Your incisions will be covered with dressings.  These are removed the day after surgery unless there is drainage present.  At first, your incisions may be red, swollen, and have some drainage.  As healing occurs, this will go away.  Contact your coordinator if your incisions become red and angry looking.  Also call if there is abnormal drainage or pain.  These are signs of infection.

 

Do not use lotions or creams on your incision.

 

Your staples or stitches may be removed before you go home.  They will be replaced with steri-strips (paper-like strips).  These will curl up, loosen, and fall off over time.  Do not pull these off.  Doing so may cause your incision to open.

 

Your incision may be more sensitive to sunlight.  It will burn easily.  Avoid direct sunlight to the area.

 

Notes

 

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♥ Cardiac Rehabilitation

 

  • Why do I need this?
  • What will this consist of?

 

The goal of cardiac rehabilitation is to make sure you do not become weak after your transplant.  A quick start is vital!  You will begin exercises very soon after transplant.  This will:

 

  • Increase your strength.
  • Reduce your risk of pneumonia.
  • Reduce your risk of developing blood clots in your legs.
  • Shorten your stay in the hospital.

 

A member of the rehab team will visit you the day after your transplant.  Your sessions will begin with the rehab staff checking your blood pressure while you are seated and standing.  Your heart rate and rhythm will be watched throughout the whole session.  You will start by taking short walks.  These will increase in time and distance as you get stronger.  Day 2 through the day you go home may also include seated biking or treadmill walking.  Our goal is to have you perform upwards of 20 minutes of activity each day before you go home.  Keep in mind, everyone’s recovery varies.  Your plan will be made to suit you and your special needs.

 

Before you go home, you will get a referral to your local cardiac rehab program.  It is vital to keep up with your exercise program with your local rehab staff once you go home.  Your local rehab staff will receive information on your progress during your time in the hospital.  It will be easy to start where you left off in your program with them.

 

Notes

 

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♥ Medical Alert Bracelet

 

  • Why is this needed?
  • Where do I get one?
  • What information should be on this?

 

You should buy some type of medical identification jewelry.  This is needed in case you are found during a medical emergency and are not able to talk.  This will ensure that the UW Heart Transplant team can be called right away to guide those caring for you.

 

Here is a suggested wording with 5 lines, 20 characters per line limit.

S/P Heart Transplant

UWHC 608-262-8915

Ask for the

Heart Transplant

Coordinator

 

American Medical Indentifications

  • 1-899-363-5985 or www.americanmedical-id.com
  • $21.95 - $189.95
  • Access to your complete medical information 24 hours/day
  • Bracelets and necklaces

 

Lauren’s Hope

  • 1-800-360-8680 or www.laurenshope.com
  • $39.95+
  • Available in sterling silver with crystals or beads

 

If you choose to use the Medic Alert brand, please note that they will not engrave our direct phone number on the item.  Rather, they will engrave their phone number and charge a yearly fee to keep your information the hospital’s phone number on file.

 

There may be other bracelet options at your local pharmacy.

 

Notes

 

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♥ Appointment with your Local Medical Doctor

 

  • When do I need to see my local doctor after transplant?
  • What do I need to call my local doctor for after transplant?

 

You must have a local doctor to follow your care.  Plan to see your local doctor shortly after your transplant.  We rely on the local doctor to address routine health issues such as diabetes and minor infections.  We’ll work closely with your doctor to give you the best care.  The transplant team will manage your transplant medicines. The transplant team will also address any issues about your heart.  You will need to follow the advice of your local doctor and the transplant team in regards to diet, exercise, and other health needs.  We want you to live a normal, healthy life after transplant.

 

♥ Commitment to Follow-Up Care

 

  • What things do I need to do after my transplant?
  • What will I need for support from family and friends to meet these commitments?

 

For a transplant to be a success, you need to commit to:

  • Follow the treatment plan prescribed by your doctors.
  • Call your coordinator about any problems and symptoms.
  • Take all prescription drugs as prescribed.
  • Follow the diet and exercise plan devised by your doctor.
  • Keep your appointments, clinic visits, lab draws, and biopsies.
  • Do not abuse your body by smoking, drinking, or using non-prescribed medicines and herbals.

 

♥ Life after Transplant

 

  • What are some things I can do to cope with my emotions after transplant?

 

After transplant, people can live a normal, healthy life.  Adjusting to your transplant can be tough for the patient and loved ones.  It is common to feel anxious, depressed, or frustrated.  This may be due to your medicines as well as the stress of having a new heart.  Talk with someone about your feelings.  The transplant team, your nurse, or social worker can help you cope with these emotions.  Sharing your feelings with your loved ones and other may also be helpful.  Most areas have support group meetings for people who have had transplants and for their loved ones to attend.

 



The information provided should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Any duplication or distribution of the information contained herein is strictly prohibited.

Last Updated: 12/17/2007

Copyright © 03/15/2007 University of Wisconsin Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. UWH #6547

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