A Suitable Heart Becomes Available
WHERE THE DONOR HEART COMES FROM
Your new heart will come from someone who has been declared brain dead and whose family consents to the donation of organs. It is an anonymous gift. Brain death is a permanent condition that usually results from some sort of head trauma or bleeding into the brain. Brain death is diagnosed by many tests and confirmed by two physicians.
WHEN A MATCHING HEART BECOMES AVAILABLE
You will be contacted by phone when a matching heart becomes available. Do not to eat or drink anything from that time on.
If you are driving, you will be asked how long it will take for you to get to the hospital. If you live a distance away from the hospital, an air ambulance may be arranged for you.
You must come to the hospital as soon as possible.
Do not drive yourself and do not rush or break any speed limits.
WHERE TO ENTER THE HEART INSTITUTE
You can enter the Heart Institute through the main entrance at 40 Ruskin Avenue until 9:00 p.m. After 9:00 p.m., you will have to enter the hospital through the ambulance entrance on Melrose Avenue.
If Admitting is open, your spouse, family or friend should go there and provide them with the necessary information. If closed, they can do this the next day.
PREPARING FOR SURGERY
Once you arrive at the Heart Institute, the following things will happen to prepare for surgery:
- Blood tests will be done.
- A chest X-ray will be taken if a recent one is not available.
- Your chest will be shaved.
- You will shower with a special soap.
- The surgeon, surgical resident and anesthetist will visit you.
- Your implantable cardioverter defibrillator (ICD) will be shut off.
Two surgeons will be involved in your surgery, one to retrieve the heart and one to get you ready to accept the heart. They will work together to decide when to move you to the operating room. They will also do the final check to be sure the donor heart is in good shape for transplantation.
Sometimes the heart must be rejected at the last minute because it has become unsuitable for use. If this happens, your transplant operation will be cancelled. Try not to be discouraged. Another opportunity will come up.
If the heart is accepted and you are taken to the operating room, send your personal belongings home with your family, but make sure to keep your dentures, glasses and hearing aids.
The Donor Workup
Donors go through a number of tests and assessments during their workup process. They have heart tests and blood work completed as well. Information is also collected from their family and friends. Trillium Gift of Life (TGLN) is the organization for Ontario that prepares the donors for donation.
There are times when a donor does not meet the criteria set by TGLN, but they are felt to still be a good donor. When this occurs the donor organs will be released based on “exceptional distribution” (ExD) criteria.
This can happen for many reasons. Sometimes TGLN was unable to get a complete history from family or friends. The donor may have positive blood cultures or a history of cancer. They may have travelled outside Canada, which could expose them to risk for certain infections. They may have lifestyle behaviours that place them at risk for hepatitis or HIV.
The surgeon will inform you of the ExD heart offer when you are admitted to the hospital for your transplant. They will explain the reason for the ExD and obtain your consent to use the heart. They will review the benefits of accepting the heart versus waiting for another one based on your situation. You will be asked to sign a consent form indicating that you understand and accept the heart.
You have the final decision on whether you want to accept the heart. If you do not decide to accept the organ, this does not affect your listing status. Prior to your surgery, while you are waiting for a heart, review this with your family or friends and talk about whether you would be willing to accept a heart that is offered to you based on this condition. That way, if it does happen, you will have already had some time to think about it, and you will know what you want to do.
You may need follow-up testing after the heart transplant. This may be completed while you are in the hospital or once you are discharged. The follow-up testing will be based on the cause for the donor ExD.
Some donor blood work results are compared to your results to determine where you will need “prophylaxis” so that you do not develop an infection after your transplant. Cytomegalovirus is one of the tests. If either you or the donor is positive for this you will need a medication for the first six months to prevent you from developing this infection. The medication used for this is called valganciclovir and it is very expensive. Make sure it is covered by your drug plan.
The Heart Transplant Operation
The surgery will last from four to six hours depending on your condition. The operation may take longer if:
- You have had heart surgery in the past.
- You are on Coumadin®.
- You have a mechanical heart device.
There are two types of heart transplant surgeries. One is called “biatrial” and the other “bicaval.”
For the biatrial technique, the back portions of the right and left atria with a portion of the pulmonary artery and aorta are left intact to serve as connections for the new heart.
For the bicaval technique, only the back portion of the left atrium along with a portion of the pulmonary artery, aorta and vena cava are left intact to serve as connections for the new heart. The right atrium is completely replaced with the new heart.
HEART RATE CONTROL AFTER TRANSPLANT
Your heart has many nerve connections to your central nervous system. These help control your heart rate. During a heart transplant, these nerves are cut and do not grow back. This is referred to as a “denervated heart.”
For you, this means your resting heart rate will be around 90 to 110 beats per minute, instead of a slower, more average, 70 to 80 beats per minute. It also means your heart will respond differently to exercise, taking longer to speed up when you start and longer to slow down after you have finished. Therefore, you should warm up and cool down whenever you exercise.
In some cases, the pacemaker centre of the donor heart, called the sinus node, does not work properly after surgery. If this happens, a permanent artificial pacemaker will be inserted before you leave the hospital.
WHAT YOUR DESIGNATED CONTACT PERSON AND FAMILY CAN EXPECT
On the day of your surgery:
- Your family can stay with you before you go to the operating room.
- Once you leave to go to the operating room, your family will be expected to remove all your belongings from your room. The length of your stay in the intensive care unit is unpredictable.
- Your designated contact person/family member will be responsible for keeping your other family members informed of your progress.
During your operation:
- Your designated contact person/your family is welcome to wait in the family lounge on the main floor. Please check in with the volunteers at the desk.
After your operation:
- Once the surgery is complete, the surgeon will meet with your designated contact person, if he/she is waiting in the family lounge, or telephone him/her. If your contact person chooses to wait at home during the operation, he/she should let the nursing coordinator know.
- Your contact person may come visit you after speaking with the surgeon. This may take some time. You should ask a volunteer to arrange this.
- Your designated contact person will receive two progress calls from the nurse after the operation. One should be between 9:00 p.m. and 10:30 p.m. the evening following your surgery, and the other will be between 9:00 a.m. and 10:30 a.m. the next morning. However, surgery schedules are unpredictable, and these times may vary. The CSICU will provide your contact person with the contact information of the unit you will be staying in.
VISITS FROM FAMILY MEMBERS
When it is time for your family to see you, a volunteer or nursing coordinator will bring them to the Cardiac Surgery Intensive Care Unit (CSICU). Visits should be short and restricted to immediate family.
While you are in the CSICU, your family can visit you for short periods of time (one or two family members at a time). The visiting procedure for the CSICU is as follows:
- Your family should check with the volunteers at the front desk in the main lobby (Ruskin Street entrance). Volunteers are there from 9:00 a.m. to 9:00 p.m.
- The volunteers will call the CSICU to arrange the visit.
- You are only allowed one or two visitors at a time. Special arrangements can be made for visits from children under the age of 12.
- Your visitors may be asked to wait while care is being given to you.
- Before entering, your family members must use the hand washing gel.
- There is no visiting between 6:45 a.m. and 7:45 a.m. and between 6:45 p.m. and 7:45 p.m., while the nurses are giving a patient report.
Note: Your family members cannot visit you if they have a cold, fever, diarrhea, cough or any other signs of infection.
After you are transferred out of the CSICU, your family can visit you according to the following guidelines:
- Visiting Hours: 10:00 a.m. to 1:00 p.m. and 2:00 p.m. to 8:00 p.m.
- Rest Period: 1:00 p.m. to 2:00 p.m. Please do not visit during the rest period.
- Only two visitors at a time at the bedside
- Family members who are ill should stay at home
A heart transplant is still considered important news in many communities. Information about you and your family is never given out to the media by the University of Ottawa Heart Institute without your knowledge and consent.
To protect the privacy of the donor and their family, donor information is confidential. Both parties are to remain anonymous, but you can communicate with one another through the Trillium Gift of Life Network.
WRITING TO YOUR DONOR FAMILY
The decision to contact your donor family is a personal choice. There is no time limit on when you should or should not write them. You do not have to write a letter. You can send a card that says “thinking of you” or “thank you for your thoughtfulness.”
Here are some helpful hints for writing your letter:
- Open your letter with “Dear Donor Family”.
- Talk about any hobbies or interests that you have.
- Write about your family, but please do not include names.
- Describe your illness and how you have been doing since your transplant.
- Share what has happened since your transplant (birthdays, graduations, etc.).
- Acknowledge the family and thank them for their gift.
You should not identify yourself in the letter or say where you had your transplant. Once you have completed the letter, give it to the transplant APN. Place your letter or card in an envelope and leave it unsealed. Your letter or card will be forwarded to Trillium Gift of Life, who will then pass it on to the donor family.
Your letter will be appreciated by the donor family members. It will help their healing process by letting them know that their difficult loss has helped another individual. You may or may not hear back from your donor family. Some families find it helpful to write back, while others prefer privacy and chose not to reply.
For more information contact:
Trillium Gift of Life Network
522 University Avenue, Suite 900
Toronto, Ontario M5G 1W7
Toll-free information line: 1-800-263-2833
After the Operation
CARDIAC SURGERY INTENSIVE CARE UNIT (CSICU)
After the surgery, you will be cared for in the CSICU. The number of days you will stay in this unit will depend on:
- Your general condition before the surgery
- Whether there were any complications during the surgery
You will have many tubes attached to you after surgery. The following table explains what they are for and when they can be removed:
|TYPE OF TUBE
line in your wrist
in your neck
|Two special wires near the
bottom of your chest
|Catheter in your bladder
- If you are having incision pain, it is important that you let your nurse know. He or she has no other way of knowing.
- Your chest incision pain will not be completely gone, but it should not stop you from moving or breathing properly. On a scale from 0 to 10 (10 being the worst pain you can imagine and 0 being none at all), your pain should be around level 3.
A couple of hours after the breathing tube is removed, you will sit up on the side of the bed. The sooner you move, the faster your healing process will be. Remember to support your chest and not to use your arms to move. Physiotherapy will review this with you and your nurses will remind you.
You will not be able to drink right away, because there is a risk of choking. Be patient. Your nurse will give you something to drink when it is safe.
TRANSFER TO NURSING UNIT H3/H4
You will be transferred to the ward when your vital signs are stable, most of the lines have been removed and you can move around with the help of one person.
When you are transferred to the ward, you may still have an intravenous line in your neck, pacer wires and a portable heart monitor.
The goals for your care on the unit are to increase your independence by:
- Improving your strength, mobility and coordination
- Getting you more involved in your care by taking your own pills
- Preparing you and your family for discharge through education
- Continuing to watch for changes in your condition
It is important for you to get up and move as soon as possible. Using your arms will prevent you from developing complications such as pneumonia, clots in your legs and constipation.
When you move, it is important for you to remember not to use your arms. This will cause the bones in your chest to rub together and become inflamed. This inflammation can lead to an infection that is particularly dangerous for heart transplant patients.
Your length of stay in the hospital will depend on your condition. You will be discharged once you:
- Have stable vital signs and your incisions are healing well
- Show no sign of infection
- Are mobile and independent
- Can safely take your own medications
- Have completed your discharge training
- Have your home care and other services in place
- Have had one biopsy showing no signs of rejection
Before you are discharged, the transplant APN will review with you and your family information on anti-rejection medications, rejection drugs and infection self-monitoring.
When you are discharged to go home, make sure you have:
- Someone at home with you for the first two weeks. If you do not have anyone to stay with you once you are discharged, please let the social worker or transplant APN know. Arrangements will be made for you.
- A calendar printed from the Transplant Office
- A list of your medications
Your follow-up appointment with your cardiologist
- Your appointments for your next biopsy and blood work
- Requisitions for your blood work
- Your prescription for cyclosporine, if you are on the drug. Your prescription should be written and brought to the Heart Institute pharmacy the day before discharge. If you live in Ontario, this is where you will pick up your cyclosporine.
- If you were monitored by other divisions (e.g., Infectious Diseases or Endocrinology) find out whether you need a follow-up appointment with them.
The Return Home
You should expect the first three months after your transplant to be a period of major adjustment. During this time, the fear of infection, rejection and drug side effects will subside. It will be at least six months before you feel like your old self again. Try not to be discouraged with your progress.
When you leave the hospital after your surgery, you may feel nervous because you are now in charge of your care. Don’t worry, we are just a phone call away. You will also come to realize the need for lifelong monitoring, reconditioning and a possible change in the type of work you do. The support of family and friends is very important during this time.
Exercise is very important to your physical and mental well-being. Before discharge, your nurses and physiotherapists will work with you to improve your mobility and coordination, as well as build your strength and endurance.
Usually, by the time you are ready for discharge, you will be able to tolerate a walk around the unit and a climb of two flights of stairs.
After discharge, you will be able to resume normal activities. However, it is important that you maintain an exercise program and that you gradually increase your walking to 20 minutes, both morning and afternoon. The physiotherapist will give you further guidelines in this area.
You should not lift more than 10 pounds for the first six weeks.
Do not forget you have a “denervated heart,” and you will need longer warm-up and cool-down periods when exercising.
Once you are discharged, it is recommended that you join the Cardiac Rehabilitation program to help you get your health back on track.
An intake session is usually booked prior to starting physiotherapy. Your physiotherapist can give you the date of your intake session. This session is completed in the Cardiac Rehabilitation Department on the 2nd floor. You will be asked about your past medical history and current medications. There are also some forms that you will have to fill out. The session can take up to three hours.
You have some options when it comes to rehabilitation. It is strongly recommended that you attend a program at a centre so that you can benefit from all of the programs they offer. If you do not live in Ottawa, ask your physiotherapist if there is a program near your home.
You may also be able to work on rehabilitation at home. Speak to your physiotherapist about this.
Generally, six to eight weeks after your operation, the sternum, or breastbone, is sufficiently healed for you to drive again. However, your cardiologist must assess you and may decide to do further tests to see if it is safe for you to drive. This will be discussed with you during one of your clinic visits.
It is normal during the early part of your recovery to be too tired to think about sex. As you begin to feel better, plan to have sex at a time when you are feeling rested and comfortable. Wait for several hours after you have had a large meal or a lot to drink before having sex.
Sexual relations with your partner requires about the same energy as climbing two flights of stairs. If you can climb two flights of stairs without shortness of breath or chest discomfort, sexual activity can be resumed.
When having sex, make sure you use a position that does not require you to hold yourself up with your arms until your sternum has healed (at least six weeks). Find a position that is comfortable for both you and your partner.
You should be aware that weight control is difficult for some post-transplant patients. Your appetite may increase from the effect of your medications. Maintain good common sense eating habits, which include eating three meals a day and drinking low-calorie beverages such as water and skim milk. If you drink soft drinks, use diet options. Keep your intake of sweets and high calorie foods to a minimum.
Your weight will be monitored during your outpatient clinic visits. Keeping your own daily weight record is recommended.
The general anaesthetic given to you during your surgery can take time to wear off. This may affect your vision. Do not change your eyeglass prescription right away. Wait a couple of months. If the problem persists, see your eye doctor.
Do not smoke! Smoking is bad for your new heart. It constricts blood vessels and robs the heart of much needed oxygen by displacing oxygen with carbon monoxide in the blood.
Smoking also damages the delicate lung tissue and can lead to lung infection, not to mention cancer. Because you are taking immunosuppressive medications, you are already at risk for developing lung infections. Smoking will add to this risk.
Second-hand smoke is equally harmful!
Because of the medications you are taking, you are at greater risk for skin damage from the sun, which could lead to skin cancer. You must apply sunscreen containing a minimum sun protection factor (SPF) of 25 before going out into the sun. This will provide 97% protection from the sun’s rays. If you have a tendency to burn, you should stay out of the sun as much as possible.
Once you have had your transplant surgery and are on immunosuppressive therapy, it will be more important than ever that you maintain a high standard of oral hygiene. Bacteria in your mouth can enter your bloodstream through your gums and infect your heart.
You can prevent dental complications by:
- Brushing after every meal
- Using dental floss at least once a day
- Cleaning dentures or prostheses after every meal
Regular dental check-ups, every six to 12 months, will also help. Ask your cardiologist whether antibiotics are required before and after your dental appointments.
RETURN TO WORK
The aim of transplantation is to help you return to work or to your pre-transplant, active status.
When and if you return to work will depend on how well you are recovering and the type of work you do. A vocational counsellor is available through the Rehabilitation Centre to help you.
Sometime within the first six months post-transplant, you may no longer require or may no longer be eligible for disability insurance. Lifelong disability is not expected or guaranteed.
GET A MEDICAL ALERT BRACELET
You may pick up a form from your nurse or a pharmacist. In an emergency, this bracelet will alert medical personnel that you are a heart transplant recipient and are immunosuppressed.
The following should be engraved on your bracelet:
- Heart transplant
- Antirejection medications
- Any drug allergies
Outpatient Clinic Visits
You will be seen in the Transplant Clinic soon after your discharge from the hospital. Initially, you may be seen monthly or more often and after each heart biopsy. After two years, your visits will be every six months to once a year.
During your clinic visit, the transplant APN and cardiologist will assess you, review your lab work and medications, and inform you about any changes.
The dates for your next appointments will be given to you in the clinic or mailed to you by the Transplant Office.
Please bring a complete list of your medications to your clinic appointment. If you have any questions about your clinic visit, please call the Transplant Office at 613-696-7000, ext. 15468.
When you are first discharged from the hospital you will need to do weekly blood work for about a month. After that, the transplant APN will tell you how often to do blood work.
Remember to leave 12 hours between your evening dose of anti-rejection medication and your morning blood work. Do not take your medications until after your blood work is done in the morning.
The Heart Institute lab is located on the second floor, near the clinics. It is better to use this lab for blood work but, if that is not possible, it can be done in a community lab. Talk to your transplant APN about which lab is the best to use.
DIAGNOSTIC TESTS AFTER A HEART TRANSPLANT
Every year you will have the following tests completed for your clinic visits:
- ECG and chest X-ray
- Blood work
- Angiogram (Your cardiologist will decide if you need to have this done.)