Caring for Your Heart Transplant for Life HF#6639



♥ Basic Lab Values

 

• How often do I need to have lab work drawn?
• Why do I need to have lab work drawn on a routine basis for the rest of my life?
• What labs are drawn?

 

The immunosuppressive drugs that you take for the rest of your life after transplant require that certain labs be drawn.  These will need to be done right after transplant and at least 4 times a year after that.  These can be drawn at your local clinic or doctor’s office.  Having these labs done is vital to your safety and long term health. They are done to check for

• Infection
• Drug side-effects
• High Cholesterol
• Lipids
• Other organ damage

 

Complete Blood Count (CBC)

This lab checks for infection and anemia.  People who have had a heart transplant may have slight abnormalities in their white blood count (WBC), hematocrit, and platelet count.

 

Creatinine and BUN

These labs look at your kidney function.  This may also be done before x-ray tests where dye is injected into your veins.

 

Potassium, electrolytes, and magnesium

Certain drugs can lower the body’s store of these needed elements.  If your levels come back low, supplements may be needed.

 

Cholesterol, triglycerides, and lipid panel (LDL)

These tests are done to assess your risk of developing transplant vasculaopathy (similar to coronary artery disease), stroke, and other circulatory problems.  These values may be high due to some drugs.  Over time, high levels of these can affect your blood vessels and your new heart.  Eating a heart-healthy diet and getting routine exercise can help to keep these levels in control.  You must fast for 12 hours before these tests are drawn.  Ideal lab values for transplant patients are

• Cholesterol – less than 200 mg/dl
• Triglycerides – less than 100mg/dl
• LDL (the bad cholesterol) – less than 100mg/dl
• HDL (the good cholesterol) – higher than 40mg/dl

 

Liver function tests: AST, ALT, Bilirubin, alkaline phosphatase, LDH

These tests are used to check for drug side effects and disease.  A minor rise in these is common.  Serious problems will cause a rise of at least twice the normal range.

 

Creatinine Kinase (CK)

This is done to check for skeletal muscle changes or neurologic disease.  The statin drug that you take can cause a rise in this value.

 

CMV DNA PCR

This test is used to see if you have active cytomegalovirus.  This is a virus in the herpes family that is common to transplant patients.  This test is done any time we think you may have the virus in your system.  This test is more reliable and quicker when done at UW Hospital.

 

Prostate Specific Antigen (PSA)

This is used to detect prostrate cancer.  It is done on males as part of their yearly testing.  Many things can cause a rise in this level.  If yours is high, we will advise you how to follow-up on the results.

 

♥ Return to Work

 

• Will I be able to return to work after a transplant?
• What programs are out there to help me with this?

 

Most patients are able to go back to work some time in the first year after transplant.  If you are on Social Security Disability, the government will consider you disabled for 1 year after your transplant.  Your doctors may release you to return to work before that.  Your social worker will plan to meet with you about 3 months after your transplant.  You will discuss going back to work in more detail at that time.

 

If you have Social Security/Supplemental Security Income/Medicare/Medicaid, there are rules under the “Ticket to Work” program that allow you to take part in “trial work periods”.  This would help you to make sure that you are able to go back to work.  While doing this you would keep your benefits.  Medicaid has income and asset limits.

 

BPAO’s (Benefits Planning Assistance Outreach Program Cooperative Agreements) provide all social security beneficiaries with disabilities access.

• Work incentives.
• Planning.
• Support services.

 

♥ Basic Healthcare

 

• Which doctors do I need to see and when?
• What tests are done yearly?
• What do I need to do before I see my dentist?

 

You will need to take care of your new heart for the rest of your life.  You are always at risk to develop rejection or problems with your heart.  This can occur months to years after transplant.  Keeping up with all of the tests below will help the transplant team to view the current health of your heart.

 

Yearly testing

 

You will be scheduled for testing each year.  This will be done close to the anniversary date of your transplant.  You will have a cardiac catheterization done at this time.  This will look for narrowing in the arteries of your heart.  The nerves to your heart were cut during surgery.  You are no longer able to feel chest pain common with a heart attack.  This is the best test to do to see if your heart vessels are starting to get blocked.  

 

Other tests done at this time will include

• Blood tests.
• Chest X-ray.
• Electrocardiogram (ECG or EKG)
• Heart biopsy.

 

You will also have a Dobutamine echocardiogram done at the six month mark between your yearly exams.  This is done to see if there are any changes in your heart that are of concern.

 

You need to have routine contact with your local doctor between visits with the transplant team.  This doctor can watch you for health problems that impact your heart (high blood pressure, high cholesterol, kidney function, and other problems).  The transplant team is always there to answer any questions that your local doctor may have.

 

Eye Care

 

You should follow up regularly with your eye doctor.  Your vision may change after transplant.  This may be due to better blood flow to your eyes and the high doses of steroids that you are taking.  You should wait at least 6 months after transplant before having your eyes checked.  Call your coordinator for any concerns or if you have a sudden change in your vision.

 

Dental Care

 

Brush your teeth at least twice a day.  Floss once every day.  You need to follow up with your dentist twice a year.  Routine cleanings (every 6 months) will help to prevent infections in your mouth.  You will need to take one dose of antibiotics before every dentist visit and cleaning.  This is done to prevent infections that can travel to your heart.  Be sure to contact your dentist or coordinator before your visit.  They can order your antibiotics.  Call your coordinator for any sores, white film, or pain in your mouth.

 

♥Letter to Donor Family

 

• What do I need to know before writing to my donor family?
• Where do I send my letter?
• What if we want to meet each other?

 

You have been given the greatest gift of all - The Gift of Life.  It may be hard to find the right words to express how grateful you are to your donor family.  Whether you contact them or not is your choice.   It may help you to know that donor families find comfort in letters they get from the recipients of their loved one’s organs.  Here are some tips for writing your first letter.

• To maintain confidentiality, do not include identifying information (last name, address, telephone number).
• Acknowledge their loss of a loved one
• Say “thank you”.  It may not capture all of your feelings, but it is a start!
• Tell them about yourself, such as what you do for work, and hobbies.
• Tell them about your family (spouse, children, and grandchildren).
• Tell your story.  Explain how the transplant event has changed your life.  Tell them about all of the things you are able to do as a result of the transplant.

 

Every letter goes through the University of Wisconsin Hospital and Clinics Organ Procurement Organization.  This is done to protect the privacy of both the donor family and recipient.

 

Once your letter is written send it to the address below.  It will be sent to your donor family.

                             UWHC OPO

                             450 Science Drive, Suite 220

                             Madison, WI  53711

 

In the future, you and your donor family may choose to contact each other directly.  You may even schedule a time to meet.  Before giving out any personal details, the donor family and recipient sign a release form.  This is required by UWHC OPO. Please call 608-265-0356 for details.

 

♥Rehabilitation and Exercise Program

 

• Will I have rehab when I go home?
• What kind of exercise should I do?

 

The rehab staff work with you to assist, check, and improve your activity.  They will set up your rehab follow-up.  This will be in your hometown or a nearby place.  It will last for 6-12 weeks.  This depends on your insurance coverage.  The sessions are often held 3 times a week.

 

Over time, most patients are able to resume their normal routines.  It will take time to gain strength and endurance.  Keeping up with a routine once you have finished rehab is the best way to manage your weight.  This will also help to improve your well-being. 

 

There are two types of exercise that are vital to start and maintain for a lifetime.

1.  Aerobic exercise

• Any movement that is done without stopping and involves large muscles. This may include walking and cycling.
• Do this 3-5 times a week.
• Do this for 30-45 minutes each time.

2.   Resistance training

• Using weights to increase muscle strength.
• This can help to counter the loss of bone mineral density from antirejection drugs.
• Helps to increase strength and keep weight in control.

 

Keep in mind that the nerves that send signals to your heart have been cut.  These would tell your heart to increase or decrease its rate.  Due to this, your heart rate will not increase right away when you start to exercise.  It will increase slowly by responding to circulating hormones.  It is vital that you have a good warm-up and cool-down sections in your exercise session.  Since the nerves have been cut, you are also not likely to have any chest pain after your transplant.

 

♥Follow-up

 

• When do I need to return for a clinic visit?

 

You will be followed by the transplant team for the rest of your life.  The follow up routine after the first year is

• Yearly exam around the date of your transplant.
• 3 month follow up clinic visit and lab draw.
• 6 month clinic visit and lab draw. This could also include a Dobutamine echo and a heart biopsy.
• 9 month follow up clinic visit and lab draw.

 

If you have signs of rejection or other health issues, we may need to see you more often.

 

♥Medications

 

• What drugs do I need to know about?
• Why do I need these drugs?

 

Besides the immunosuppressant drugs you are on, there are a few other classes of medicines you should be aware of.  Every drug has two names.  One is a generic name and the other is a brand name.  At the University of Wisconsin we try to use only generic names.  The only medicine that can not be taken this way is the immunosuppressant drug, cyclosporine.  With this drug you must stay with the same brand you have been given in the past.

 

Statins

These are used to lower levels of cholesterol and other fats in the blood.  They can lower LDL (bad cholesterol) and TG (triglyceride) levels.  They may also increase HDL (good cholesterol).  This may help prevent health problems caused by cholesterol clogging blood vessels.  One of the most common side effects of statins is muscle aches.  Be sure to tell your coordinator if, at any time, you develop muscle aches that last for a long time.

 

Supplements

Vitamins and minerals are needed in small amounts by your body.  They can be found in foods and in supplement form.  You will be started on a Pre-Natal Vitamin or a multivitamin with folic acid.  Calcium and a vitamin D supplement will also be started.  Most patients also need a magnesium supplement.

 

Be careful. The term “dietary supplement” can be used to refer to

• Vitamins and minerals.
• Herbs, botanicals, and other plant substances        .
• Amino acids and concentrates, and metabolites and extracts of these.

 

Some of these can be toxic to the liver.  They may also interact with other drugs. This can cause adverse effects.  You should not take any supplement or herbal treatment without checking with your transplant team.

 

Anti-Hypertensives

 

One of the side effects of the immunosuppression drugs is high blood pressure.  Most transplant patients are on at least one drug to help control their blood pressure.  There are many different classes of anti-hypertensive agents to choose from.  Your doctor will start with the one that is best for you based on your kidney function, how high your blood pressure is, and other factors.

 

♥Diet  

 

• Are there things I need to limit or take out of my diet?
• What should I know about dining out?

Sodium

 

You should limit the amount of salt that you eat.  Below are some ideas for you to try.

 

• Buy fresh, plain frozen, or canned “with no salt added” vegetables.

 

• Use fresh poultry, fish, and lean meat.  Try to avoid canned or processed meats.

 

• Use herbs, spices, and salt-free seasoning blends in cooking and at the table.

 

• Cook rice, pasta, and hot cereals without salt.  Cut back on instant or flavored rice, pasta, and cereal mixes.  These almost always have added salt.

 

• Choose “convenience” foods that are lower in sodium.  Cut back on frozen dinners and pizza, boxed mixes, canned soups or broths, and salad dressing.

 

• Rinse canned foods to remove some salt.

 

• Buy low- or reduced-sodium, or no-salt-added versions of foods.

 

• Choose ready-to-eat breakfast cereals that are lower in salt.

 

Fats

Fats — above all saturated fat — affect the health of your heart and blood vessels. Saturated fat is often found in foods from animals.  This includes

• Fatty meats.
• Poultry skin.
• Whole milk dairy products (butter, cheese, cream, and ice cream).
• Oils - coconut, palm kernel, and palm - found in processed foods such as baked goods, snack foods, and crackers.

If you use this type of fat, keep the amount small.  Try soft or liquid margarine and oils such as canola, safflower, and olive.  Keep in mind that all kinds of fats have the same amount of calories.  This must be limited to help you lose weight.

 

Calories

 

Just because a product is fat free, that does not mean it is calorie free.  Fat free or reduced fat products can have as many, or more, calories per serving than regular products.  You need to watch both your fat and calorie intake.

 

You should compare the calories in products like these.

 

1 Fig Cookie	½ Cup Vanilla Frozen Yogurt	2 Tbsp Peanut Butter
Fat free              51 Calories Regular             56 Calories	Nonfat             100 Calories Regular           104 Calories	Reduced fat    187 Calories Regular           191 Calories

 

Dining Out

 

Here are some tips to help you eat healthy when eating out.

 

Ask your server if they can

• Accommodate special requests?
• Serve margarine rather than butter with the meal?
• Serve fat free (skim) milk rather than whole milk or cream?
• Trim fat from poultry or meat?
• Leave all butter, gravy, or sauces off a dish?
• Serve salad dressing on the side?
• Use less cooking oil when cooking?

Select foods which are

• Steamed
• Garden fresh
• Broiled
• Baked
• Roasted
• Poached
• Lightly sautéed or stir-fried

 

♥Immunizations

• Can I get vaccines?
• Should I get a flu shot?

 

Transplant patients should NOT get LIVE virus or attenuated virus vaccine.  We do suggest that you get a flu shot each year.  Do not do this until one year after your transplant.  Please contact your transplant coordinator before getting any shots.

 

Immunization chart

 

Vaccine	Adult Heart Transplant Recipient	Close Contacts and People Living in the Same Home
Influenza, Injected*	Yes	Yes
Hepatitis B **	Yes	Yes
Hepatitis A	Yes	Yes
Tetanus/Pertussis	Yes  every 5 years	Yes  every 5 years
Polio, Inactivated	Yes
S. pneumonia ***	Yes
N. meningitidis +	Yes
Rabies ++	Yes
Varicella	No	Yes
Small Pox	No
Anthrax	No
Measles^	No	Yes
Mumps^	No	Yes
Rubella ^	No	Yes
Shingles^	No	Yes

 

*     If more than 6 months after transplant and no recent rejection event.

 

**    Routine vaccination recommended before transplant.  Vaccination series at 1 year if patient remains Hepatitis b negative.

 

***  Pneumococcal polysaccharide vaccine should be given before transplant. This should be done again every three to five years after the first dose.

 

+     Certain patients (members of the armed forces, those who travel to high risk places, properdin deficient, terminal complement component deficient, those without a working spleen, college freshman living on campus) may be able to have the meningococcal vaccine.

 

++   Not given on a routine basis.  Recommended for exposures or potential exposures due to the type of work they do.

 

^      Avoid contact with the person who got this for 3 weeks after the dose was given.  Best if given before transplant.

 

♥Travel

 

• What should I take with me when I travel?

 

Be sure to take all your drugs with you when you travel.  If you are going by plane, carry them with you.  Do not check them with your luggage.

 

Take the name and phone number of your doctor with you.  It is vital to have medical identification with you.  If you become ill and need care while traveling, go to the nearest emergency room.  They can call the heart transplant team.

 

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: 03/10/2010

Copyright © 03/10/2010 University of Wisconsin Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. HF#6639

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