What to Expect
It is important to discuss all of your risk factors with your physician when deciding on the best treatment. Risk factors to consider include:
- Age, overall health, and medical history of the patient
- Tolerance for specific medications, procedures, or therapies
- Cause of heart failure
- Disease progression
- Expectations for the course of the disease
Before Your Surgery
Once you are accepted as a transplant candidate, Patients are listed by blood type, height, weight and urgency. The categories for urgency are:
- 1A - Patients are very sick and are in the hospital with intravenous monitoring equipment or mechanical devices helping to temporarily sustain heart function
- 1B - Patients may be in or out of the hospital and have IV medications or a mechanical device stabilizing heart function
- Status 2 - Most patients are out of the hospital and stable
- Status 7 - Patients temporarily inactive on the transplant list
The amount of time you wait for a donor will depend on your listing status, your blood type and size, and how long you have been waiting on the list. You may wait a few days or over a year. The donor's body must be close to your own height and weight. Your pre-transplant cardiologist will discuss the possible length of your wait with you.
You may wait at home or in the hospital, depending on whether you need IV medications and other devices to support your heart. Since hearts can be transplanted only within a short time of being taken from the donor, you may be asked to move temporarily near the hospital. You will need a cell phone so you can be contacted immediately if a donor organ becomes available while you are away from home.
As soon as a donor heart becomes available you will be contacted by the transplant co-ordinator, Heart failure cardiologist or transplant surgeon. Once you arrive at the hospital you will have an IV line placed, blood drawn, and receive a chest x-ray. The surgeon and an anesthesiologist will see you and take your medical history. The surgeon will review the surgical procedure and the risks of the operation with you and your family. There is usually several hours of wait time between notification of donor availability and the actual procedure.
Once it is time for your operation, a team of anesthesiologists will take you to the operating room where you will have additional special invasive lines placed. You will then be given medications to put you to sleep. A breathing tube will be placed into your airway to help you breathe and a urinary catheter will be placed to drain your bladder during the surgery. As the surgery begins an incision will be made in the midline of your chest.
A heart-lung bypass machine will take over the work of the heart and lungs. While this is occurring another team of surgeons will travel to the donor's hospital. Once there, the team will examine the donor's heart to make absolutely certain that it is a suitable match.
Once the donor team arrives with your new heart the diseased heart will be removed and replaced with the healthy donor organ. The operation usually lasts between five and six hours, but can last longer if you have had previous open-heart surgery or have a left ventricular assist device in place.
After your surgery is completed you will be taken to the intensive care unit to recover. You will be on a breathing machine for at least six to eight hours while the effects of the anesthesia wear off. Once the breathing tube is removed, nurses and physical therapists will work with you to gradually increase your activity level.
Most patients stay in the ICU for four to six days, although this varies depending on the pace of your recovery. While in the ICU you will not be sharing a room with another patient. Once you are stable, you will be transferred into a private room in the Intermediate ICU. Since you are in a private room, your family members can visit as much as they want and can even spend the night in the room with you. Your family is highly encouraged to spend as much time as possible at your bedside in the Intermediate ICU. This is where you and your caregivers will learn how to take care of your new heart. Your nurses and the transplant pharmacists will also teach you your new medication regimen.
Physical and occupational therapists will work with you to build up your strength and stamina. They will tell you about the safest and most effective ways to increase your activity after your hospital discharge. The transplant dietitian will educate you and your caregivers about proper nutrition related to various aspects of your transplant health. Your assigned social worker will work with you and your family to address coping, local housing, resources and forms which may need to be completed.
Cardiac biopsy is presently the only reliable means of diagnosing heart rejection. It is performed at regular intervals after surgery, at occasional times when rejection is suspected, and to assess the adequacy of anti-rejection therapy.
If, while admitted to the hospital, a heart biopsy is done, you should follow all instructions from your attending physician.
If you are coming in for an outpatient biopsy, we suggest you:
- Do not take diuretics the evening before or morning of the biopsy
- Have a "salty meal" the night before (here's the time to treat yourself some salty foods)
- Don't lift heavy objects for 24 hours following the biopsy
How it works ?
The procedure is done in the operating room or cardiac cath lab and takes about 30 minutes. A doctor will give you a local anesthetic to numb an area around your neck.
A long tube (catheter) called a bioptome is passed through a small incision on the right side of the neck then down into your heart. Sometimes the biopsy catheter will be placed though a vein in your groin if the neck veins aren’t accessible.
A type of X-ray called fluoroscopy, helps the doctors guide the bioptome through the jugular vein and into the right ventricular chamber of the heart. The jaws of the instrument are opened and closed, and a small piece of tissue is snipped off and removed.
They will look for white blood cells to determine if you are experiencing rejection. The biopsy results are usually available within 24 to 48 hours. The Transplant Coordinator will notify you of the results as soon as possible.
Following the biopsy, you will be asked to keep your head upright to avoid increased pressure in the jugular vein which could result in bleeding at the site of biopsy. After the biopsy, your neck area will be observed for bleeding and gentle pressure applied. You should notify the nurses or physician if you experience either bleeding or swelling. This rarely occurs and is usually controlled readily with additional light pressure.
Shortness of breath or unusual chest pain immediately after a biopsy may be signs of a complication and should be reported promptly. If the femoral approach is used, you will be asked to lie on your back with your leg straight for an hour after the procedure.
Biopsy specimens are examined under the microscope for signs of rejection and take one day to process. You will receive the results of the biopsy the next day and be advised about the need for any changes in your medication regimen based on the results. An echocardiogram is done with each heart biopsy to assess ventricular function and is used in conjunction with the heart biopsy to determine a treatment regimen.
As you near discharge, the transplant coordinator will teach you more about your transplant and inform you of how the transplant team will monitor you for potential complications. Once you have recovered from surgery, have no outstanding medical issues, are able to independently take your new medications and have received all the required education, you will be discharged from the hospital, and based on your home location, you will be required to live within a short distance from the center, for up to 12 weeks as needed.
At the time of discharge, a transplant coordinator will work with you to help identify a reliable and convenient pharmacy to fill your prescriptions. We will make every effort to have your discharge medicines available to you before you leave the hospital so we can be assured you have everything you need and fully understand your medication schedule.
Be sure you know all of them by name. When you need new supplies of medications and have checked to see no refills remain, ask the physicians or nurses in the clinic for new prescriptions.
You will be instructed to monitor your blood pressure at home to determine your response to antihypertensive medications. You will need to purchase a blood pressure monitoring device for home use. Many brands are available. In general, those with digital readouts are easiest to use and are available at most pharmacies and discount stores.
Plans for health maintenance after discharge are started as soon as you can care for your own needs. It is essential that you thoroughly understand the medications you are taking: their dosage, purpose, and side effects.
You should learn to measure your weight, temperature, and pulse. You should measure your weight at the same time each day, usually in the morning, to allow for more accurate comparison.
A weight gain of two to four pounds a day is significant and may indicate fluid retention. In order to evaluate the need for medication adjustment, notify your physician or nurse coordinators.
Your temperature should be taken daily or at any time that you feel feverish. If your temperature is above 38°C (100.4°F) and remains elevated for several hours, call your physician. Do not take anything to lower your temperature until instructed by your physician.
Temperature lowering drugs such as Ibuprofen will also reduce fever. We do not recommend regular use of this class of drugs, i.e., NSAIDs (nonsteroidal anti-inflammatory drugs), but their occasional use is probably safe.
Fever may indicate the onset of infection, or very rarely, a rejection episode, and these medications could mask the symptoms.
Prior to discharge, you will have been instructed on how to take your pulse (heart rate), both at rest and during activity. Note and report any significant changes in rate or regularity.
Life After Transplant
Once you are discharged from the hospital you will be seen in the out-patient clinic twice a week for about two weeks, on Mondays and Thursdays, Then once per week on Monday or Thursday, then once every 2 weeks for about 3 weeks, then once a month until you are out six months, then once every two months until you are year out from transplant.
A clinic day usually involves an echocardiogram (30-45min), a blood draw (20min), a clinic visit which will include a visit with the Nurse Coordinator, a visit with either the Nurse practitioner or Transplant cardiologist , a visit with the Transplant Cardiologist, and possibly a visit with the dietitian, social worker and pharmacist.(20-45 min), a chest x-ray (20 min), and a biopsy (30-45 min). On these days you can expect the better part of your day to be in and around the medical center.
The cath lab experience
One way to adequately determine whether or not you are experiencing rejection is to complete a heart biopsy. Your biopsy will be performed at our Catherization Lab or cath lab. Most patients at the cath lab are in the process of being evaluated and diagnosed with serious cardiac ailments. The waiting room can be tense as families and loved one process the information doctors are trying to explain. A few patients are taken directly from the lab to surgery. You, as a post-transplant patient, are considered an elective or non-urgent procedure, and therefore there are times when the urgent cases get pushed ahead of the biopsies. Be on time, but consider your appointment time as a best effort. Relax; take advantage of the wait, if there is one, to catch up on your reading. Get something light to eat. The cath lab makes every effort in keeping you informed of their schedule and where you stand.
The annual exam
An annual exam is the once a year evaluation that includes all of the routine clinic appointment needs (MD visit, echocardiogram, labs, chest X-ray) but also an ECG, a coronary arteriogram or angiogram, early patients (year 1-5) usually get a intravascular ultrasound (IVUS) as well. The (IVUS) is done in the same way as the angiogram, and a biopsy is done depending on your rejection history or years out from transplant. This “ annual” takes up two days, and does not include an overnight stay. Day 1 includes all the studies except the angiogram/IVUS and biopsy , and Day 2 is the angiogram and biopsy. After the angiogram one must stay flat on your back for 4-6 hours so that the groin entry site heals. Therefore the entire procedure and recovery phase takes about 8 hours. Please make sure you have someone drive you home after this procedure.
Human sexuality and fertility in the transplant recipient
Many patients have concerns about sexual activity after transplant. After heart transplantation, which occurs through a sternal or chest incision, it is advised to maintain sternal healing precautions. Sternal precautions are to prevent uneven stress on the incision by not exerting unequal strain on one side or the other, such as lifting heavy objects, lifting or straining one side of the body over the other. These precautions are advised for 8-12 weeks after surgery. After 12 weeks sexual activity can resume as one feels up to the activity and without fear of injury.
Fertility (the ability to produce eggs in the female and produce sperm in the male) is not stopped or perhaps not even interrupted by surgery, the transplant, or the immunosuppressants and other medications. Therefore for women of childbearing potential and men who are sexually active who do not wish to become pregnant or father children, birth control needs to practiced.
Women of childbearing potential should see their Obstetrician and gynecologist doctor (OB-GYN) soon (within 3-6 months) after transplant to discuss birth control options. Every individual will have different needs based on age, prior gynecologic history, and medical status, such as presence of high blood pressure, diabetes, years post-transplant.
Women who are transplant recipients and are considering having children should have a thorough discussion with their physicians regarding risk on their health. Transplant poses special considerations that must be addressed. Some patient may want to discuss questions with a genetic councilor. A genetic counselor is available at our center.
Safe sexual activity may be resumed without concern after incisional healing, usually within six to eight weeks following surgery. If sexual dysfunction occurs, feel free to discuss it with your physician.
Sexual concerns after heart transplantation are commonly experienced yet seldom voiced. The sensitivity of the topic may prevent open discussion with your health care providers and can delay referrals, changes in medications and treatment. The best advice is to inform your provider so that appropriate evaluation and suggestions can be considered.
Erectile dysfunction (ED) is prevalent in male patients who have cardiovascular disease and in patients who are on high blood pressure medication. ED should be reported to your primary care doctor and/or your transplant cardiologist as soon as possible so that referrals or treatment can be done as soon as possible.
- Dishes do not need to be sterilized.
- Bed linen may be laundered routinely and does not need to be changed on a daily basis.
- Pets offer no threat of disease with the exception of toxoplasmosis, which is found specifically in cat feces.
- Indoor or outdoor activities are limited only by the threat of potential injury or the limits of physical stamina. Use common sense in all activities. Restrictions apply only when there are extremes in pressure changes such as flying in unpressurized cabins, gliding, hang gliding, and scuba diving.
- The physiologic response of the denervated heart is different from normal, and the lack of normal reflexes may be hazardous in these activities.
- Swimming in clean pools and the ocean is an excellent form of exercise, and relaxing in a clean hot tub is acceptable after full recovery. There is no need to restrict exposure to the general public. You may attend movies, sports events, parties, etc.
Post-Transplant Cardiac Rehabilitation
- Following your transplant, one of your highest priorities will be to regain your strength and mobility. Like all people who experience major surgery and an extended hospital stay, you have lost muscle mass, aerobic capacity, balance and mobility in the period before and during surgery. You will need to take the initiative to recover strength and mobility for your safety and lifestyle. Regular exercise should become a new permanent feature of your life as you seek to fulfill the promise of your transplant. Your donor made the ultimate sacrifice for you to have this second chance.
Cardiac rehabilitation is generally divided into three phases: I, II and III.
This phase begins in the hospital. Phase I begins as soon as the second day after your transplant surgery when you were asked to sit in a chair or stand and walk around the ICU. That was the first step in taking action, tailored to your capabilities, to restore your mobility. The time in the hospital is very valuable and should be used to make sure that when you go home, but before phase II starts, you remain active. During phase I, it is not how much you do, but that you begin a consistent and frequent pattern of paced (exercise and rest) activity. You are, after all, recovering from major surgery.
This phase usually takes place at a rehabilitation facility staffed by trained personnel where you can be monitored (connected wirelessly to a central station where your heart -- rate and rhythm-- can be observed) and where physical activity can be augmented with information about nutrition, medications, how to exercise safely, special information about post-transplant health risks and psychological factors.
You are likely to see dramatic improvements in capability during Phase II. You will have to guard against the tendency to conclude prematurely that you are back in shape and stop formal exercise. Your goal should be to regain all of your capabilities for the activities of daily life and eventually recreation. Phase II for a heart transplant usually lasts about three months and is generally covered by your insurance.
A general comment about exercise, at this point, is appropriate. If you exercised regularly before becoming ill and ultimately receiving your transplant, you will be amazed at you restored capabilities and excited to return to an exercise regime. But if you have never exercised regularly, you will need to accept the need at first and then build the motivation to continue as you see capabilities return that you thought were lost forever. These renewed capabilities like increased strength and better balance will erode if you stop your program. The increase in capabilities can continue for many months. Make it fun and you will be committed for life.
This phase begins at the completion of Phase II and should continue for the rest of your life. The transition to Phase III is an important decision point. In general some people decide to end their formal exercise program. However, most people realize that in order to take advantage of the remarkable second chance, exercise must become a daily part of their lives. You should receive help and support from your Phase II facility contacts and the post-transplant team to make the right decision.
For many people the beginning of a Phase III program coincides with going home and finding a qualified Phase III facility is part of the decision. If you are remaining in the local area, most phase II facilities will allow you to continue with a Phase III program at the same place. You are familiar with the staff and the surroundings and probably have developed meaningful relationships with your fellow patients. You will no longer be monitored regularly, but the staff will observe and supervise you during every session.
To promote your physical and mental well-being, it is vital that you continue the exercise program that began following your surgery. The physical therapist will guide you in a daily progression of activities designed to improve your strength, endurance and coordination. You are also encouraged to walk as much as possible, resting as needed.
As discussed with your therapist, there are a few restrictions in your physical activity for the first six to eight weeks following surgery in order to allow time for the breast bone (sternum) to heal. They are:
- Do not lift objects heavier than ten pounds
- Do not push or pull objects heavier than ten pounds unless instructed by your therapist or nurse
- Do not attempt sit-ups, push-ups, or pull-ups
- Discontinue any activity that causes pain or pulling across your chest
- Do not drive a car due to risk of injury to sternum from steering wheel in case of accident.
Prior to your discharge from the hospital, you and your therapist will discuss a plan for your exercise program as an outpatient. You will be asked to continue the three phases of your program on a daily basis. These phases are:
- Warm-up: Limbering and stretching activities
- Peak activity: Cycling, rapid walking, and swimming (we do not recommend jogging as a primary activity; your therapist will explain why)
- Cool-down: A repeat of slow stretching and walking
After discharge, there will still be a few restrictions to your activities. You will be free (with your doctor's approval, of course) to pursue almost any recreational endeavor, however contact sports should be avoided. Brisk walking is suggested rather than jogging.
Just as in the hospital, you will need to be aware of how your heart rate and respirations respond to exercise. If you become overly short of breath or fatigued, you should begin your cool-down phase. Your therapist will give you guidelines and a daily log to record your exercise response before you leave the hospital. Exercise should be decreased during rejection episodes.
Sexual activity is not to be avoided, although incisional pain may limit the intensity of activity early after surgery. Remember, any activity or position that causes pain or pulling across your surgical incision should be avoided for the first six to eight weeks following surgery. After this period the sternal incision has healed sufficiently well to withstand any level of physical activity and restrictions, including those against driving, no longer apply.
If you have any questions concerning your activities or restrictions in performing a particular activity, please ask your therapist, nurse or doctor.
Nutrition After a Heart Transplant
Nutrition is an important part of a healthy life before, during, and after your transplant. Surgery and certain medications can change your nutrition requirements and the way your body processes food. During your hospital stay, a dietitian will work with you to help you make informed nutrition choices and answer nutrition questions you may have. While everyone’s nutrition needs are not the same, the basic principles of healthy nutrition after transplant are discussed below.
Achieve and maintain your ideal body weight
If you are underweight, it is important to reach your ideal body weight so that you have adequate fat and protein reserves for protection during periods of infection or rejection. Once you successfully attain your desirable body weight, it is equally critical to stay within a close range, since excessive weight places an added strain on your new organ(s).
Excess weight can increase blood cholesterol, triglycerides, and glucose. All of these factors increase the risk of arteriosclerosis, elevated blood pressure, and possible coronary artery disease. Long-term use of prednisone can also elevate blood pressure, blood glucose, and triglyceride values. Excess body weight further complicates the problem and compounds the risk of developing arteriosclerosis.
Limit sugar and concentrated sweets
Long-term use of prednisone is associated with increased blood glucose levels.
High blood glucose levels can indirectly increase blood triglyceride levels. It is recommended that you limit your intake of sugar and concentrated sweets, and keep the total amount of carbohydrate in your diet within a moderate range.
Modify the fat content of your diet
Blood cholesterol levels have been shown to be directly related to coronary artery disease in the general population.
These guidelines are recommended for fat intake:
- Moderately restrict your cholesterol intake
- Decrease the total intake of saturated fats (Saturated fats are solid at room temperature and usually of animal origin.)
- Substitute polyunsaturated fats (Polyunsaturated fats are usually liquid at room temperature and vegetable in origin.)
This includes limiting egg yolk, high-fat dairy foods and meats, and selecting non-fat milk, lean cuts of red meat, poultry, and fish. The primary cause of coronary artery disease is chronic progressive deposits of fatty substances, cholesterol and fibrous tissue in the walls of the arteries.
Whether cholesterol deposition plays nearly as important a role in transplant coronary artery disease is an unanswered question, but it seems prudent to try to control cholesterol levels. Evidence shows that blood cholesterol levels are influenced by the amount of dietary cholesterol, saturated fats, and total fats. Blood cholesterol levels can be lowered if both the total amount of cholesterol and saturated fat are decreased and poly-unsaturated fats are substituted.
We advise you to follow the dietary fat modification even if your blood cholesterol level is within normal range and you have no prior history of coronary artery disease. There is no level which is considered too low, since the risk of developing arteriosclerosis continues even with cholesterol levels in the normal range.
Restrict your sodium intake
To avoid fluid retention and aid in control of high blood pressure, we recommend that you follow a no-added salt diet. This means that food may be lightly salted during cooking, but no salt is added at the table. Avoid highly salted foods and consume high sodium processed foods such as canned meats, cheeses, frozen meals and pizzas, and regular canned foods in moderation.
Contact our dietitian
If you receive your heart transplant medical care at our Medical Center and would like to meet with our dietitian on a one-on-one basis, please call. The nutrition services are open to all heart transplant patients . Telephone consults are available for patients who live at a distance.
Mental Health in Heart Transplant Patients
A heart transplant is often a life changing surgery. As is the case with various other chronic medical problems, heart transplant recipients are at increased risk for the development of significant psychiatric symptoms and diagnosable psychiatric disorders.
Up to 50% of patients with advanced cardiac disease experience anxiety or depression. Following transplant up 63% of heart recipients develop anxiety and/or depression during the first post-transplant year.
In heart failure, low cardiac output and poor blood flow to the brain can contribute to cognitive impairment, even in the absence of an actual stroke. Cardiac medications can also contribute to cognitive impairments. In the case of patients on ventricular assist devices, micro emboli may be a contributing cause of brain dysfunction.