As you recover from surgery, you will be followed closely by the heart transplant team. In the first few weeks after transplant, you will be seen frequently in our outpatient clinic. If you live outside the St. Louis area, you can arrange temporary lodging near the hospital for the first few weeks of observation.
You will have clinic visits twice a week for the first two weeks after transplant, as well as biopsies every 10 days for the first month. Then you will be seen every two weeks for the next two months for a biopsy and clinic visit. For the rest of the first year, you will be seen monthly for a clinic visit and biopsy.
Throughout the entire transplant process, the transplant team will continue to communicate with your primary care physician. Over time, routine care will be transitioned to your primary care physician. However, for continuity of care and to ensure the best outcome for you, we will follow you for the life of your transplant, while working closely with your primary care physician.
After transplant, your decisions and dedication to your own self-care will be vital to your health and the success of your transplant. You can help yourself by taking your medications as directed, being aware of side effects or signs of rejection, following a healthy lifestyle with good nutrition and exercise and by seeking support. And our transplant team will be with you every step of the way to answer questions and offer guidance and care.
Nutrition and exercise
As a transplant recipient, medications will become a significant part of your life. Our transplant team will help you manage and understand your medications. We also will advise you about taking any over-the-counter medications.
You will require anti-rejection medications to suppress your immune system so your body doesn't reject the transplanted heart. Because your immune system is suppressed, you will be more prone to infection, especially during the first three to six months after transplant.
While you're taking medications you need to carefully monitor and report any unusual side effects to your nurse coordinator. Side effects vary by dosage and type of medication. Ask your nurse coordinator or doctor any questions you have about your particular medication.
With the changes to prescription drug coverage through Medicare Part D (effective Jan. 1, 2006), more people than ever are eligible for drug coverage. Find out if the immunosuppressive drugs needed after transplant are covered.
Because a transplanted heart is considered a "foreign object" to your body, your immune system may try to reject the organ. It is very common for this to occur within the first few months of transplant. If you experience rejection, you will take additional medication to suppress your immune system so the rejection resolves and to protect the transplanted heart.
The risk of rejection decreases over time, but can occur at any time. It's important to follow all medication regimens and physician orders to prevent rejection, and to recognize the early signs of rejection. In many cases, rejection does not cause any signs or symptoms.
Symptoms of rejection may include:
- low grade fever
- shortness of breath
- fast heartbeat or skipping some beats
- swelling of hands or feet
- sudden weight gain
- drop of blood pressure
- not feeling "quite right" or flu-type aches and pains
If you experience any of these symptoms, call your transplant nurse coordinator immediately. Rejection must be treated as soon as possible to avoid complications. It is usually treated by temporarily increasing the dose of your anti-rejection medication or by using a combination of medications.
The same medications that help prevent rejection also increase your risk for infection. For the first six months after surgery, the likelihood for rejection is highest, so you will be taking higher doses of these medications. This makes you even more vulnerable to infection. You must take caution to protect yourself from infection. You will be asked to follow these recommended guidelines:
- Take your temperature daily and record.
- Wash your hands frequently.
- Wear a mask whenever you are in a crowd. It is especially important to wear a mask when you come in for clinic visits for the first three months after transplant.
- Avoid contact with persons who are ill.
- Practice good dental hygiene.
- Do not work in or visit any form of construction site. Dust can be harmful. It can contain a fungus that is dangerous to people taking immunosuppressive medications.
- Avoid gardening for the first six months after your transplant. Wear garden gloves when gardening. Soil has many molds and fungi that can be sources of infection.
- Do not use pepper for the first three months after transplant. After this time, you may use pepper, but replace your pepper supply every three months. Old pepper may contain a fungus that is dangerous to people taking immunosuppressive medications.
- You may have pets, but have other family members or friends clean the litter box, cage or yard. In addition, do not add any new pets to your home, especially birds.
You should call your transplant coordinator anytime if you have:
- fever over 99°F
- signs of illness (cold, flu or extreme tiredness)
- sudden weight gain
- high blood pressure
- white patches on your tongue or mouth
- cough that lasts more than two days
- cloudy or foul-smelling urine
The Heart Transplant Support Group is designed to offer support and education to Barnes-Jewish Hospital heart transplant recipients, candidates and their families. By providing a forum for sharing information and experiences, the support group helps patients and those close to them better understand and cope with the issues and concerns associated with heart transplant.
The group is a mix of people in various stages of the transplant process so members learn first-hand about what to expect during the transplant experience. Group leaders, members and guest speakers explore the physical and emotional concerns that accompany heart transplant. Some common topics discussed at monthly meetings include:
- lifestyle changes caused by transplant
- financial concerns associated with transplant
- transplant surgery
- side effects of medications
- fear of organ rejection
The Mentor Program at Barnes-Jewish Hospital is a valuable and unique program designed to provide information, guidance and emotional support to those involved in the transplant process. The mentors at the foundation of the program are patients who have successfully gone through transplant. They can provide a great source of encouragement and understanding for new patients.
The confidential Mentor Program offers a social network of peers that helps those experiencing the process in overcoming the sense of being alone, and encourages them to stay active before and after transplant. Mentors can provide first-hand knowledge of the process, plus information about logistical matters such as places to live while in St. Louis for transplant, how to work with the transplant team and their own experience with certain medications.
Nutrition and Exercise
It's important to follow a heart-healthy diet and get regular exercise after heart transplant. Many of our patients participate in a cardiac rehabilitation program. We also encourage our patients to start a formal exercise program.
As you recover from heart transplant surgery, it is normal to feel tired or weak. With regular exercise and good nutrition, you will eventually get back to a more normal, active routine. Most patients are ready to return to work or school within three to six months after transplant, although it may take longer to build your energy and endurance.
In the hospital, you will receive physical therapy to help you regain your strength. Once you're home, the best activity in the first few weeks is walking. You should avoid strenuous activity and heavy lifting for the first six months after transplant. Activities and sports that pose a high risk of injury should be avoided entirely.
After transplant, your body has increased nutritional needs to allow for healing and to fight infection. You also need to rebuild muscle tissue and restore protein levels. Your transplant team dietitian will develop a diet plan specific to your needs to help in your recovery and keep you healthy after transplant. The dietitian also can help you with any special dietary instructions or diets to manage co-existing medical complications such as diabetes, high blood pressure or high cholesterol.
The Barnes-Jewish Hospital Heart Transplant Program accepts most insurance plans. However, insurance companies periodically change their coverage. Please verify your insurance coverage with your provider. Once you have started the evaluation process, one of our financial counselors who specialize in transplant coverage will be able to assist you with insurance issues. Please notify us immediately if your insurance changes.
We follow you closely for the life of your transplant, which is one important reason why patients in our program have excellent overall success rates. Long-term care is provided by a transplant cardiologist and a certified clinical transplant coordinator (CCTC).
It is important to bring all your medications and your daily log to each clinic visit. This log should include:
- names of medications, dose, and time you take them
- daily weight
- daily temperature
- daily heart rate (pulse)
- daily blood pressure
- questions you want to ask your doctor or nurse
It is important to keep in regular contact with your primary care physician (PCP) who knows you and can take care of your general health maintenance issues. We recommend that you make an appointment with your PCP soon after your transplant. We strongly encourage you to get a flu vaccine every year. Because of the medications you will take, we recommend that you be checked for skin cancers on a regular basis. If you notice unusual bumps, rashes or skin discolorations, please contact your PCP or dermatologist. Wear sunscreen, protective clothing and a hat when outdoors because of an increased risk of skin cancer.
Once a year, you will be required to have an "Annual Evaluation." This consists of:
- cardiac catheterization to check for the presence of coronary artery disease (blocked arteries). If, after three to four years, you have no evidence of heart disease, you may be offered the option of undergoing a dobutamine or exercise stress test instead of a cardiac catheterization.
- heart biopsy
Additionally, we will ask you bring a copy of the following reports:
- PAP smear for women
- mammogram for women
- prostate exam for men
- dental report
- eye exam
- dermatology exam
For more information on the heart transplant program at Barnes-Jewish Hospital, call