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.

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 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.

BIATRIAL TECHNIQUE

BICAVAL TECHNIQUE

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

PRESS INQUIRIES

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.

DONOR INFORMATION

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

Phone: 416-619-2318
Email: info@giftoflife.on.ca
Toll-free information line: 1-800-263-2833

READJUSTMENT PHASE

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

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.

REHABILITATION

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.

DRIVING

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.

SEXUAL ACTIVITY

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.

WEIGHT

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.

VISION

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.

SMOKING

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!

SUN PROTECTION

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.

DENTAL CARE

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