What You Need to Know about a Heart Transplant

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1 Page 1 of 8 What You Need to Know about a Heart Transplant This information will help you understand the risks, benefits, and possible complications involved in a heart transplant. Please read it carefully. Ask questions about anything you do not understand. Evaluation Before you can have a heart transplant, you must be evaluated to see if: A heart transplant is the right treatment for you. Another treatment besides a heart transplant could help you. You are well enough to have heart transplant surgery. Starting an evaluation does not guarantee that you will be accepted for a transplant. The evaluation may uncover conditions that prevent you from being a good candidate. These conditions may require follow-up or further treatment. For this, you may be referred back to your family doctor. Or you may choose to have us address these new issues. The evaluation includes: Initial screening Testing Meetings with the transplant team. Initial screening We will review your records to make sure that you are eligible for a heart transplant. You should be no older than 70. You cannot have any other organ problems that might hurt your chances of a successful outcome. Things such as cancer, poor nutrition, obesity or uncontrolled mental health problems may exclude you from receiving a heart transplant. You must also be tobacco free for at least 6 months before a heart transplant. Testing An evaluation for a heart transplant involves many tests. More tests may be needed based on the results of these tests. As part of the evaluation, you may get one or more of the following: Blood tests. These tests can help show: Your blood and tissue type, to help find a matching donor. Whether you have certain viruses, such as hepatitis or HIV. How well your other organs are working. (This may involve testing your urine as well). For informational purposes only. Not to replace the advice of your health care provider. Copyright 2011 Fairview Health Services. All rights reserved. SMARTworks REV 01/18.

2 Page 2 of 8 A chest X-ray. This helps show any problems with your lungs. Heart tests. An electrocardiogram (EKG) can show if you have any heart rhythms that are not normal. An echocardiogram uses sound waves to look at how well your heart is working. A stress test shows how well your heart works under stress. (An angiogram tests to see if one of your blood vessels is blocked.) Breathing tests. Breathing tests (called pulmonary function tests) show how well your lungs are working. They may be needed if you have a history of smoking or lung disease. Some patients may also need occasional urine tests to screen for drugs. Meetings with the transplant team As part of the evaluation, you will also meet with members of the transplant team, including: Transplant coordinator. The transplant coordinator will explain the transplant and what you will need to do before and afterwards. Transplant surgeon. The transplant surgeon will talk with you about whether a transplant is the right treatment for you. The surgeon will discuss the risks, benefits and possible complications of a heart transplant. Cardiologist. A cardiologist will give you a physical exam and review your tests to make sure a transplant is right for you. A cardiologist will also help care for you and your new heart after your transplant surgery. Social worker. A social worker will evaluate how well you can cope with a transplant and follow a treatment plan. The social worker will also help you put together a support network. Financial coordinator. A financial coordinator will talk with you about the cost of the transplant and the medicines you will need. The financial coordinator will help determine how much of these costs your insurance will cover. All of your costs may not be covered by insurance. Registered dietitian. A registered dietitian will help make sure that you get proper nutrition before, during and after the transplant. Some patients may need to be referred to other specialists for example, a hepatologist (liver doctor), a pulmonologist (lung doctor), a nephrologist (kidney doctor) or a psychologist.

3 Page 3 of 8 Selection for transplant The evaluation will tell us if you: are medically suited for a transplant. can be expected to survive a reasonable length of time after the transplant. have enough social and financial support to follow the complex regimen required for a successful outcome. Based on your evaluation, the Heart Transplant Selection Committee will decide if you should be listed for a transplant. You will be told what the committee decides and given the full results of your evaluation. Surgery We will talk with you in detail about your surgery, including its risks. The transplant surgeon who meets with you before the surgery may not be the same surgeon who performs your transplant. You can expect to be in the hospital for 7 to 14 days after surgery longer if there are complications. You may have to spend a long time in an intensive care unit (ICU). During this time, you may be on life support, including machines to help you breathe and clean your blood. Even after you are discharged from the hospital, you will continue to get a great deal of care from your transplant team at the Transplant Center at the University of Minnesota Medical Center. For a while, you will see your heart transplant doctors once a week. As you recover, you will see your doctors less often. At your visits you will have exams, blood tests and regular biopsies. About 3 months after the transplant, your visits to the transplant center will change to once a month. About six months after your transplant, your visits will change to every two months. These are only guidelines. Your experience may vary according to your individual needs. Because you need so much care right after your transplant, you must have a good support system to help you keep your appointments and stick with your regimen.

4 Page 4 of 8 Risks of surgery General anesthesia. The transplant surgery will be done under general anesthesia. This means that you will be given medicine to keep you from waking up or feeling pain during the surgery. There are risks with general anesthesia. The doctor who will give you this medicine (anesthesiologist) will explain these risks to you. You will need to sign a separate consent form for anesthesia at the time of surgery. Blood and blood products. You may need blood if there is bleeding during or after surgery. Blood and blood products can contain bacteria and viruses that can cause infection. Such infections are rare but can include human immunodeficiency virus (HIV), hepatitis B (HBV) and hepatitis C (HCV), among others. You will be asked to sign a separate consent form for blood (transfusion) at the time of surgery. Complications. All surgeries have a risk of complications. Many complications are minor and get better on their own. But in some cases they are serious enough to require another surgery or even cause death. Patients having any surgery can have a heart attack or stroke or get pneumonia. Other possible complications include: Blood clots in the legs. Even if compression boots are used, blood clots can form in the legs and move through the heart to the lungs. In the lungs, the clots can affect breathing, which can lead to death. Blood clots can be treated with blood-thinning drugs. These drugs may need to be taken for a long time after surgery. Problems with transplanted blood vessels. A clot (thrombosis) can form in one of the blood vessels that goes to or from the lung or heart. Bleeding may also occur. Nerve damage. Although this rarely happens, nerves may be damaged during surgery. Nerve damage can cause numbness, weakness, an inability to move (paralysis) or pain. In most cases, these symptoms are temporary. But in rare cases they can last for a long time or even be permanent. Other rare but possible complications include sores on the skin (pressure ulcers), burns caused by the use of electrical equipment during surgery, damage to arteries and veins, and permanent scarring at the incision. The doctors and nurses will watch you very closely after surgery. They will look for problems with bleeding, blood flow and healing. If a problem develops, you may need to go back into surgery. Rejection. After your transplant, your body will try to reject your new organ. This is normal. You must take anti-rejection medicine and keep all appointments to lower the risk that your body will reject the new organ. The risk of rejection never goes away. We will talk with you about the signs and symptoms of rejection while you are in the hospital. And we will do various tests to watch for rejection. Rejection can get worse over time, making it harder for you to breathe or do certain activities. If this is not controlled, the transplant can fail. Infection. The risk of infection is higher for transplant than for other surgeries because the medicine needed to keep your body from rejecting your new organ makes it harder for you to fight off an infection. Infections from bacteria, viruses and funguses are all possible. Cancer. Transplant patients have a much higher risk of getting cancer. Nearly 1 out of 10 patients gets some type of cancer. Most are treatable skin cancers, but patients are at risk for other cancers, including lymphoma.

5 Page 5 of 8 Psychological and social problems. Although you may be happy to get the transplant, there will be stresses on you and your family. It is important that you choose one or more people to support you before, during and after your surgery. Your supporter(s) will help you with such things as taking medicines and getting to appointments. If you are from out of town, you will need to stay in the area for a while after you get out of the hospital. After your transplant there will be many ups and downs in both your physical and emotional conditions. Some patients will have depression, post-traumatic stress disorder (PTSD), anxiety and other problems. Tell us if you think you may be having any psychological side effects. Risks related to the donor. The success of your transplant can be affected by the donor s history and the condition of the organ when it is received in the operating room. There is a slight risk of getting HIV or other infectious diseases that could not be detected during screening. Anti-rejection medicines and their side effects. You will need to take anti-rejection medicines for the rest of your life. These medicines keep your immune system from attacking your new organ. These medicines may include, but are not limited to, tacrolimus, cyclosporine, mycophenolate mofetil and prednisone. These medicines are costly. You must have a financial plan for paying these costs. There are many potential side effects from these medicines. Some side effects are less common than others, and not every patient will have the same ones. Here are some of the more common side effects: You may have tremors (shaking), trouble sleeping, mood swings, headaches or chronic pain. Your blood pressure may go up. You may retain fluids. You may have an irregular heat beat (atrial fibrillation). You may develop diabetes or, if you already have diabetes, it may get worse. While this may improve for some patients after 6 months, others will need life-long therapy for diabetes. Cholesterol levels are often affected as well. You may need to take medicines to control your cholesterol. Your vision may get worse, and you may develop cataracts. You may have low blood counts, including low white blood cell, red blood cell and platelet counts. You may have stomach or abdominal pain, nausea (feeling sick to your stomach), vomiting, diarrhea (loose stools) and constipation. You may develop kidney problems. If this happens, your medicines may need to be adjusted, and you will need to see a kidney specialist (nephrologist). Chronic kidney disease is a common problem for long-term survivors. If you have osteoporosis, your bones can become even more fragile and easy to break. You can also develop avascular necrosis, a disease of the large bones that causes arthritis and may require surgery to treat. Your skin may become thinner and bruise more easily. Your risk of getting skin cancers will increase. If you take prednisone (a steroid), your face may swell, and you may gain weight. You may lose hair. Or you may grow hair, including hair on your face. You may have gum and tooth problems.

6 Page 6 of 8 Benefits of surgery A successful heart transplant can extend your life and improve its quality. For most patients, this means freedom to do things they enjoy and the ability to return to work. This freedom comes with the responsibility, though to take medicines as directed, maintain a healthy lifestyle, go to all appointments and complete all blood work. Is a transplant right for you? A transplant may not be the right option for every patient. If we feel that it is too dangerous for you to have a transplant, we will let you know. If you do not want to take the risks of surgery and anti-rejection treatment, you do not have to proceed with testing or be listed for transplant. If you haven t decided yet whether a transplant is right for you, you can still go on the waiting list. Later, if you choose not to have the transplant, you can take your name off the list. Right to refuse transplant You have the choice not to have a transplant. If you choose not to have a transplant, treatment for your heart disease will continue. However, if you do not have a transplant, your condition may get worse, and you may not live as long. Other treatments There may be other ways to treat your condition. Please talk about this with your health care team. Some options are: No treatment An assist device if you qualify Medicines Controlling what you eat and drink Treatment for pain and other symptoms, which may include some IV medicines (palliative intravenous inotropes) You may also qualify for an experimental treatment or research study. Ask your doctor to learn more. National and transplant center-specific outcomes We have given you data on our most recent outcomes for heart transplantation as released by the Scientific Registry of Transplant Recipients (SRTR). Our results meet or exceed SRTR standards and do not differ significantly from expected survival rates. For more information, go to

7 Page 7 of 8 Notification of Medicare outcome requirements not being met Transplant centers must meet certain outcomes. We have to notify you if we do not meet these requirements. Currently, the University of Minnesota Medical Center meets all requirements for transplant centers. Transplantation by a transplant center not approved by Medicare Having your transplant at a facility not approved by Medicare may affect whether Medicare Part B will pay for your anti-rejection drugs. Insurance coverage after a transplant Concern or grievances We will do our best to answer all of your questions and concerns. You may also bring any concerns or grievances to the patient representative for the University of Minnesota Medical Center at In addition, the United Network for Organ Sharing (UNOS) provides a toll-free patient services line to help transplant candidates, recipients, living donors, and family members understand how organs are allocated and data collected. You may call this number to discuss any problem you are having with your transplant center or the transplantation system in general. The toll-free patient services number is After you have a heart transplant, health insurance companies may consider you to have a pre-existing condition and refuse payment for medical care, treatments or procedures. After the surgery, your health insurance and life insurance premiums may go up and stay up. Insurance companies may refuse to insure you.

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