Heart Transplant Frequently Asked Questions
How does my life change post transplant?
Post-transplant life is different for everyone. The most noticeable difference is with healthy blood flow your skin color will look and you will feel better than you had before! Although post-surgery recovery is long, and it takes time to get your energy back, we often hear "wow, I did not realize how sick/low energy I was."
In addition to the cocktail of medication you will be taking, you do need to be aware of how being immune compromised effects your daily life. For example, your body will not naturally fight skin cancers like it would with a robust immune system. Sunscreen becomes a daily ritual and annual trips to the dermatologist get added to your to-do list. When kids are sick at home, you do not need to move out, just keep a common sense approach to your health and report any sign of illness or infection to your nurse coordinator. As with all content on the web, please talk to your doctors directly with any questions. This recap is to show you that some random things factor in, but for the most part you are "normal."
Tell me more about being immune compromised. Will I take meds the rest of my life?
Yes. The medications keep you from rejecting your new heart and keep you alive. In additions to immune suppressants, you will take other medications to help counteract the side effects of the immune suppressants.
Will my physical activities be limited?
The general rule is "listen to your body." For the most part, you can do anything when you are recovered. We have transplant recipients that compete in run marathons and swim. It's probably best to talk to the doctor before you understand if altitude will affect you or before you go for a swim.
OK, what about sex? When and any limitations?
Resumption of sexual relations for both men and women is fully possible and expected after heart transplantation. Practices and positions that put stress on the sternotomy wound should be avoided until three months post-transplant for the same reasons that lifting heavy weights and swimming with overhand strokes should be avoided. After three months the sternum is generally considered to be completely healed or "knit" and can withstand normal stresses.
The usual precautions regarding "safe sex" are even more important to the immunosuppressed patient than to others. A full discussion of such precautions is beyond the scope of this column, but specific questions can be discussed with the doctors or nurses in the transplant clinic.
For further information please go to human sexuality.
Will I be able to have children?
The short answer is "yes." Neither the transplant procedure itself nor the drugs needed postoperatively impair fertility for either men or women. We advise women to delay childbearing until after the first postoperative year, when their health status is generally quite stable. Pregnancy should be planned and managed by a team including experienced high risk obstetricians working with transplant cardiologists since drug dosages and rejection surveillance will need to be coordinated. Drug levels can change during pregnancy and will need to be monitored closely and kept in the therapeutic range. There is no track record of the drugs commonly used causing babies to be abnormal. The one exception to this rule is mycophenolate (Cellcept), which is the newest drug and has less experience behind it as well as some hints about abnormalities in babies of mothers taking it. This drug will usually be replaced with an alternative one prior to commencing pregnancy.
Babies of women with transplants are often a few weeks premature and somewhat small for their gestational age, but grow and develop normally.
As above, fertility is not impaired in men having transplants. Also, there is no known increase in abnormalities in the children they father.
The methods for contraception available to men and women who have transplants are the same as those used by anyone. The exception is the use of intrauterine devices (IUD's) in women, where the risk of infection with an indwelling device can be significant.
Can I swim in a public pool?
Yes! You can do most anything if you are aware of your surroundings and mindful of situations where being immune compromised can put you at risk. As in, don't jump into a pool that has not been cared for.
Can I eat raw meat?
The answer is no, unless it's cooked or smoked. you can have crab and shrimp, as these are cooked. Something like baked fish would be OK .
Can I drink alcohol?
In general, as we look at the fact there is little benefit associated with alcohol consumption (except the taste) to override the potential detrimental effects. In general, drinking after transplantation is not advisable. If you feel that you need a drink to assist with psychological or medical issues (like to help you relax, or help you go to sleep) it would be better if you discuss these concerns with your transplant team, as these could be early warning signs of other, more serious, medical or psychological issues.
Can I travel internationally?
Yes to most places, but talk to your doctor before going to the far corners of the earth. For example, consider what vaccinations you need to take to go to parts of Africa . Think about how far you'll be from a 21st century hospital and your health insurance. Most tourist destinations and overseas business trips are fine. It is when you get into remote places and encounter hepatitis, malaria and other diseases that we would be concerned.
What can I do to keep my new heart healthy?
There are some things you can do to help your new heart stay healthy.
1) Be a good patient. Know your medications. Ask questions until you understand. Follow the doctor's orders.
2) Follow a "heart healthy" diet. That means eat fresh foods; limit your saturated fats and sodium. This translates to actually following the basic diet guidelines set out by the Food and Drug Administration. A Heart healthy diet may feel like a subtle change to you or a radical food makeover. Either way, please do it.
3) Exercise. Post-transplant life needs to have an exercise plan in it. Your new heart stays healthy by staying in shape!
Will I take on memories or traits from my donor?
No; not according to the most current available scientific research.
What can I find out about my donor? Can I contact the family?
Many transplant recipients want to know more about their donor and may want to express gratitude for the donation of their new heart. A protocol for contacting your donor's family has been created in order to protect each party's safety and privacy. Respect for the privacy of your donor's family also impacts the ability of medical personnel to provide details about your donor. To give everyone some time to adjust, we recommend waiting six months to a year before contacting your donor family through a letter.
When you finish writing your first letter you will give that letter to your heart transplant social worker who will review it and send it on to the Organ Procurement Organization (OPO). The OPO will then make your letter available to your donor's family.
How long will my loved one live after transplantation?
In the medical transplant world we call it survival, and it is measured in several different ways, it is compared to national outcomes and transplant site to site outcomes, and it is carefully watched on a local, state and national level.
It is a very sensitive question. The reality is that we really don’t know how long and individual will live, but based on past patients, we have a pretty good idea. Factors, such as age and how sick one is going into the transplant, plays a big role.
Keep in mind that for a patient to be listed as a candidate the physician has determined that all medical and surgical options have been exhausted.
In general, 85 percent to 90 percent of patients survive past one year and 80 percent survive three years. Many patients at our center have survived more than 20 years.
What's the wait time?
The actual time on the transplant team is determined by many factors, including the patient's medical condition, specific patient characteristics, and listing center.
Do I have to take medications for the rest of my life?
Yes, you will have to take several medications for the rest of your life. Importantly, the immunosuppressant's that prevent the rejection of your heart must be taken exactly as prescribed. There are several other medications that are needed to prevent infections, treat high blood pressure and keep healthy cholesterol level, in addition: vitamin and mineral supplement are important
How do I know if I need a transplant?
Some patients with severe heart disease may benefit from transplantation. Your cardiologist or pulmonary medicine specialist may refer you to a transplant center for an evaluation. The purpose of the evaluation is two-fold:
- To determine the severity of your disease and whether there are any more conventional treatments
- To determine whether you would be able to survive the transplant operation and have a good long-term result afterwards
How will a transplant change my life?
A successful transplant will dramatically improve your symptoms of heart disease. Many transplant recipients can perform the same physical activities and enjoy the same quality of life as those without transplants. All transplant recipients, however, are committed to daily drug treatment and close medical supervision for the rest of their lives.
Is the evaluation very difficult?
The transplant evaluation is very thorough. In addition to specific heart assessment, tests are performed to determine the function of all the major organ systems, screen for infectious diseases and cancer, and try and predict how well you and your family will cope with the rigors of the transplant regimen. Many of the tests, even the complex ones, are fairly standardized and can be performed in your local community. Some tests may require you to be briefly admitted to a hospital.
Every potential candidate must make at least one outpatient visit to the Medical Center to meet with the transplant doctors, coordinators and social worker. Typically, most of the evaluation can be completed within a week or two.
The transplant team meets weekly to discuss patient evaluations and make decisions on appropriate treatment. Patients who are felt to be good candidates for transplantation are then put on a national waiting list.
How long is the waiting list?
Unfortunately, the waiting times for heart transplants are long — often more than six months. Each patient on our waiting list returns for an outpatient visit to our transplant clinic every two to three months, or more frequently if necessary.
While many patients can wait at home, sometimes it is necessary for patients to be admitted to the hospital in order to remain in satisfactory condition until transplantation.
What happens when an organ is available?
When the transplant team decides that a potential donor is suitable for one of our recipients, we contact the patient as soon as possible. Since it is not possible to predict when a suitable organ will become available and there is a limited amount of time to recover the organs successfully, it is very important that we be able to locate recipients quickly and get them into the hospital in a timely fashion.
Is the surgery very complicated?
This depends on each patient's specific situation. During the evaluation interview, the transplant surgeon will review the details of the surgical procedure, the risks of the procedure and the expected recovery after surgery.
How long will I be hospitalized after the transplant?
This depends on your specific situation. Although patients can recover sufficiently after heart transplantation to be discharged within 10 days, it is more typical for patients to be hospitalized for two weeks or more.
Do I have to stay near the hospital after the transplant?
We require all patients to be within 30 minutes driving distance of the transplant center for the first six weeks post discharge. The frequency of follow-up visits and lab tests during this interval can be a problem for patients who live far away. The social worker can help you locate suitable guest housing in the area.
Will I have pain after the surgery?
Generally, most patients do not report a lot of pain after heart transplant surgery. The incision does cause pain or discomfort when you cough. We will give you pain medication and specific instructions to lessen the pain.
Can my family stay with me?
Your family can accompany you until you go into the transplant surgery. While you are in the intensive care unit, family members may not stay in your room. If you need assistance finding guest housing, a social worker will help you.
We have very open visiting hours and encourage family members to spend time with you. However, in order to protect you from infection, anyone who is ill — with a cold or flu, for example — should not visit.
What will my scars look like?
The scar is down the center of the chest. It starts at the noch, or top of the sternal bone, just under your neck, and ends just past the end of the sternal bone. Initially the scar is more prominent. Over time, it will fade to a very light, thin line.
What medications will I take after the transplant surgery?
You will be on three main immunosuppressive, or anti-rejection, medications after your heart transplant. Along with the immunosuppressive medications you will need to take several medications that help protect your body from infection.
When can I drive?
After heart transplantation, you can drive when your sternum, or breastbone, is fully healed. This takes about six weeks.
When can I return to work?
You may return to work two to three months after the transplant surgery.
How long does it take to fully recover?
It generally takes three to six months to fully recover from heart transplant surgery. However, age and previous medical problems may cause a longer recovery period.
Is there a support group for patients going through transplant?
We have planned support groups for patients on the waiting list as well as for after the transplant. You will be notified of the support group meetings and the topic each month.