We are committed to ensuring that our heart transplant recipients and their families are as comfortable as possible and have a clear understanding of their treatment plan.
Below are answers to questions many patients ask our transplant staff. Click on a question below for an answer to a specific question, or scroll down to view the complete list of questions and answers.
Q: What is a heart transplant?
A heart transplant is a surgical procedure for selected patients whose hearts are so severely damaged that medications, pacing devices, and surgical repair cannot help. A donated heart is transplanted into the patient to replace the damaged heart.
While the patient is deep asleep and pain-free (general anesthesia), an incision is made through the breastbone. The patient's blood is re-routed through tubes to a heart-lung bypass machine to keep the blood oxygen-rich and circulating. The patient's diseased heart is removed and the donor heart is stitched in place.
Q: What is the recovery process after a heart transplant? How long will it take to recover?
When surgery is completed you will be taken to the intensive care unit. Over the following days as you recover from surgery, the various tubes and intravenous lines will gradually be removed and rehabilitation will begin. You will be closely monitored and evaluated to make sure your body is accepting the new organ. This includes regular heart echocardiograms, electrocardiograms and biopsies.
During this time, the cardiac surgeon, cardiologist and other transplant team members will be looking very carefully for any signs of heart rejection or infection. Medications that suppress the body's natural immune system will be administered to counter the body's tendency to reject the new heart. These medications have dramatically reduced the number of rejections.
Although you are unlikely to be very active in the first couple of days, you should be able to walk around in just three or four days. Once you are discharged from the hospital, our medical team will encourage you to become increasingly active. They will provide regular medical support, including frequent visits, blood tests, and regular "protocol" biopsies to be sure there is no rejection of the new heart. Other diagnostic tests will be performed between one and several times a year depending on your particular situation.
Q: How long will I be in the hospital after the surgery?
The average length of stay in the intensive care unit is 3-7 days, followed by 1-2 weeks in the hospital.
Q: What happens while I am waiting on the heart transplant waiting list?
While waiting, you will be seen in the clinic periodically to assist with any medical issues that may arise. Almost every patient will need to have a right heart catheterization and other tests every three to four months. These tests are important to help us know whether problems are developing that could complicate a transplant, or move you ahead in priority for a new heart.
Q: What does the evaluation and testing process include?
All candidates for transplantation begin the program with a comprehensive series of tests conducted by our multidisciplinary team of specialists. Some of these tests are required for any operative procedure while others are required especially for transplantation surgery.
Once the evaluation is complete, the transplant team will decide if heart transplant is the best option. The risks and benefits will be discussed with each patient. If the patient and transplant team agree that transplantation is the best choice, the patient is then placed on the transplant waiting list at the University of Maryland.
Q: What does it mean to say 'I'm on the list?'
The heart transplant waiting list is organized through the United Network for Organ Sharing (UNOS), which is the national list. To be on the list means that your name and important medical criteria are kept on UNOS' nationwide computer database. This database automatically matches a donor with potential recipients. Once listed, you may be called at any time, day or night, to come directly to the hospital for a transplant.
Q: How long must I wait for a donor heart?
Waiting time for a new heart varies by blood type, recipient size and weight and by "status". The status system reflects an effort to measure a patient's risk of dying soon, and to assure that patients with the most severe heart failure symptoms get priority when a donor heart becomes available. The average waiting time in Maryland is currently about 18 months for patients who are healthy enough to wait at home for their new heart. The wait is somewhat shorter for patients who require hospitalization or intravenous medicines, or insertion of a blood pump.
Q: What procedures do you follow to match the donor heart with the recipient?
The donor heart is matched to the recipient based on compatibility of blood type, body size (donor compared to recipient) and urgency of need. Other factors may be taken into account, such as resistance to blood flow through the lung arteries, where a larger or stronger heart may be necessary to push blood through the lungs, and for the transplant to succeed.
Q: Can I resume a normal life after a transplant?
Yes. You can resume a normal life while following a strict medical regimen. You may return to work and a normal lifestyle. You will need to take some precautions to avoid unnecessary exposure to infection. You will also need to take a large variety of medications to prevent rejection of the new heart, and to prevent or manage common side effects and complications of the anti-rejection medicines.
Q: How often will I have to come back to the hospital after my transplant?
Initially, follow-up care involves returning to the outpatient clinic once a week for the first month after leaving the hospital. At this time a series of tests are given to closely monitor your progress. At this time, medications will be precisely adjusted. After this initial period, patients will be seen periodically (bi-weekly, then monthly, then quarterly) over the first year. Thereafter scheduled visits occur less often, depending on the particular patient's condition.
Q: Will I have to take medications for the rest of my life?
Yes. This is very important. It is necessary for all patients to take immunosuppressive medications for the rest of their lives following transplant, because the medications help to prevent rejection of the heart. Unfortunately, it is very rare that a patient becomes "tolerant" of their new heart. A successful transplant can be undermined very quickly if patients fail to take their medications appropriately and responsibly.
Q: What is rejection?
If the immune system is able to attack the transplanted heart, it is called rejection. Rejection must be detected and treated quickly to prevent damage to the transplanted heart. After a transplant, you are given the symptoms of rejection to look for and appointments are scheduled regularly with your doctor for checkups and myocardial biopsies to help detect rejection.
Q: What are immunosuppressive drugs?
To help prevent transplant failure, heart transplant recipients are prescribed immunosuppressive drugs. These drugs inhibit the body's immune system from identifying the new organ as foreign. Transplantation has become so successful in recent years because of the development of new, more effective drugs that prevent rejection by the body of donated organs.
Q: How long has UMMC been doing transplants?
The University of Maryland performed its first heart transplant in 1990. Since then, hundreds of heart transplants have changed the lives of patients at UMMC. The history of the heart and lung transplant program is intertwined with the international reputation of the kidney, liver and pancreas transplant program. Transplant surgeons for all these organs work together at UMMC to address issues in transplantation, such as improving immunosuppression regimens and finding new ways to increase the pool of organs available for all types of transplantation.
Q: What part of the transplant cost is covered by insurance?
There are no simple answers to this question. First, you must answer some questions yourself. Do you have insurance? If so, you must read your policy book. If you do not have one, contact your broker who sold you the policy or contact your employer benefits unit. This is your transplant and you need to be involved in learning about many aspects of transplant, including insurance.
Review your plan to answer the following questions:
- Is transplant a covered benefit?
- Is a heart transplant covered by your health plan?
- Is there is a life-time maximum (amount of total dollars plan will allow for transplant)? What is it?
- How are prescription medications covered? Does the insurance plan cover medicine directly or is medication subcontracted to a "Pharmacy Benefits Manager"?
- Is the medication included in the lifetime maximum?
- Can you go to any transplant program or does your insurance limit you to only specific, designated hospitals?
- Will your policy cover the transplant at UMMC?
- Do you have an insurance case manager?
- What is his/her name and number?
There are as many different insurance plans as there are patients, so we can't discuss all the details here. Our finance coordinators and other benefits staff can work with you, but we expect you to do the basic research about your insurance.
Q: What financial coverage/insurance is accepted by UMMC?
As explained above, this must be determined on a case-by-case basis. The transplant staff will direct you to the appropriate benefits contact person. The transplant financial counselor checks each patient's insurance.
Q: What types of costs are associated with transplant?
There are several phases in the transplant process. It may be helpful to break down these costs by looking at these phases. The first costs are those associated with the pre-transplant evaluation, which would include all the tests necessary to determine if you qualify to be on the waiting list. There may be costs of hospital admission for medical treatment and stabilization before your transplant.
After that, when you are called in for your organ transplant, you will incur the costs of hospitalization, transplant surgery and various professional and facility fees. Before you are discharged home you will begin to generate fees for home nursing visits if needed, a schedule of lab testing and a long list of medications. Subsequent costs will include ongoing evaluation of your overall health and organ functioning and lifetime follow-up at the Medical Center.
Due to the wide variety of patient conditions and treatments, it's very difficult to give an average total cost for the aforementioned treatments. Each case and each patient's condition is different.
Q: What if I have no insurance/health coverage?
If you or your spouse is employed and entitled to enroll in an insurance program at work and you have not yet enrolled, we urge you to purchase that coverage immediately. If you are self-employed, all participating insurers in the state of Maryland offer open enrollment periods twice a year. You should purchase that insurance as soon as possible. For more information, contact the Maryland Insurance Administration.
You must explore all other benefits programs by making applications for:
- Medical Assistance in the state where you live
- Social Security Disability and/or SSI at your local office
- Pharmacy Assistance if you are a Maryland resident
- Veterans Administration health benefits
If you do not qualify for any of these programs, there are several national foundations that can assist patients and their families in developing a fundraising strategy and managing the money. Keep in mind that these are professional fundraising advisors; they do not give money to transplant patients.