What happens after I leave the hospital?

Getting a transplant means a lifetime commitment to medical treatments like taking many medicines every day (every 12 hours), going to clinic appointments, and doing regular bloodwork and other tests. This is to prevent rejection and minimize other potential complications.

If you live in the Edmonton or Calgary area, you will be able to go home after you leave the hospital.

If you live outside of the Edmonton or Calgary area, you and your support person may be required to stay in Edmonton or in Calgary for approximately 3 months after your transplant.

Your follow-up care will depend on where you live and which transplant program manages your care.

If your pre-transplant care was managed in Edmonton:

• You will continue to receive follow-up care through the Edmonton Transplant Program.
• The Edmonton Transplant Program will provide ongoing medical oversight and coordinate with your family doctor to manage your overall health.

If your pre-transplant care was managed in Calgary:

• Once the transplant teams decide that you are medically ready, you will be transferred to the Foothills Hospital and receive follow-up care through the Calgary Transplant Program.
• The Calgary Transplant Program will take over your post-transplant care and coordinate with your family doctor to manage your overall health.

If your pre-transplant care was managed in Manitoba:

• Once the transplant teams decide that you are medically ready, you will be transferred to the St. Boniface Hospital in Winnipeg and receive follow-up care through the Manitoba Transplant Program.
• The Manitoba Transplant Program will take over your post-transplant care and coordinate with your family doctor to manage your overall health.

Your transplant team will follow you closely. Your follow-up appointments and tests will take up a lot of time, especially for the first 3 months.

Make sure you and your support person have a way to get to and from your appointments. You will not be allowed to drive for at least 6 weeks after leaving the hospital. In some cases, you may not be able to drive for up to 3 months after leaving the hospital. Your transplant team will let you know when you can drive again.

You will need to take time off school or work during the recovery period. Talk with your transplant team about when you can safely return to school or work. The length of the recovery period can be different for everyone but is often 6 to 12 months after your surgery.

After leaving the hospital, you will need to go to appointments to see your transplant team. How often you visit the clinic depends on your medical needs. You will have many visits during the first year. To get ready for your clinic visits, bring:

• your medicines for the day
• your medicine list
• your records of weight, blood pressure, and heart rate
• your diabetes records (if you have diabetes)
• your list of questions, concerns, or changes you want to discuss

You will go for many blood tests after you leave the hospital. How often you need bloodwork goes down over time. Blood tests must be done early in the morning before you take your medicines. Having these tests is how your transplant team monitors your anti-rejection medicine levels and signs of any other medical problems.

You will need regular heart biopsies for the first year after your transplant. Heart biopsies are tests that take small samples of your heart tissue.

You will need to attend cardiac (heart) rehabilitation or a physiotherapy program. When the program is complete, it is important to continue with your home exercise program.

Things to remember after your surgery and after leaving the hospital:

• Do not lift anything heavier than 10 pounds for 3 months after your surgery. This may include heavy grocery bags of milk containers, a heavy briefcase, cat litter or dog food, a vacuum cleaner, or a child.
• Do not immerse your incisions (surgery cuts) in water for 3 months after your surgery or until the incisions are fully healed, whichever is longer.
• Talk to your transplant team before resuming sexual activity.

What can I do to help with my recovery and overall health?

Some general recommendations include:

• Eat a balanced, heart-healthy diet and maintain a healthy weight. Your transplant dietitian can help you.
• Exercise regularly following the guidelines from your physiotherapists and transplant team.
• Avoid using all tobacco, nicotine or cannabis products, smoking or vaping any substance, and using street drugs before and after your transplant.
• Discuss alcohol use with your transplant team as this is different for everyone.
• Tell the transplant team if there are any changes in your medical condition or the medicines you take.
• Check with your transplant team before taking any over-the-counter vitamins, medicines, herbal products, supplements, or medicines prescribed by anyone other than your transplant team.
• When going outside, wear a hat and sunscreen (minimum SPF 30) and do not get a sunburn. Avoid tanning beds. The medicines needed to prevent rejection of your transplant significantly increase the risk of skin cancer. Your transplant team will refer you to a dermatologist (skin doctor) for monitoring.
• Take good care of your teeth and mouth. Examine your mouth every day, before you brush your teeth, for sores or white spots. These may be signs of a viral infection or a yeast infection called thrush. If you notice any sores or white spots, call your transplant team.
• To avoid the risk of infection, do not have any routine dental work done within the first 6 months after your transplant. After the first 6 months, continue to see a dentist regularly. Before any major work on your teeth or mouth, call your transplant team.
• Keep seeing your family doctor and any other healthcare providers for your general healthcare needs.
• See your eye doctor (optometrist) for routine checkups. Wait at least 7 months after your transplant. If you are having any problems with your eyes, talk to your transplant team.
• Work with your healthcare teams to make sure your cholesterol levels, blood pressure, and diabetes are managed.
• Stay up to date on your regular cancer screenings (prostate, colorectal, breast, cervical, and skin cancer). Anti-rejection medicines increase your risk of some types of cancer.
• Buy a medical alert bracelet or necklace that says you had a heart transplant, are immunocompromised (you take anti-rejection medicines), and lists any other health conditions you have. You can also put this information in your wallet, on your mobile device, or in a health app. Talk to your transplant team before buying a bracelet or necklace.
• Avoid getting tattoos after your transplant. If you still choose to get a tattoo, tell your transplant team and make sure you are being as safe as possible.

Do not travel outside of your transplant centre’s city within the first 3 months after your transplant unless you have talked with your transplant team. Travel is not recommended outside of Canada for the first year after your transplant. Call your transplant team before travelling to make sure they feel it is safe and to check if there are tests or appointments booked during your travel time. Consider buying or confirming travel insurance when you make travel plans, even for travel within Canada.

When travelling, always bring enough medicine for the length of your trip and 2 weeks of extra medicine in case of delays. Keep medicines in your carry-on bag. A letter can be provided to you to help you take your medicines through security and customs.

You may experience new emotions or feelings as you adjust to life after transplant. You can:

• Use the coping tips from when you were waiting for your transplant.
• Ask your transplant team about being referred to someone to help you cope during these times.
• Contact the Mental Health Helpline at 1-877-303-2642 if you are an Alberta resident or are staying in Alberta.
• Call or text the National Suicide Prevention and Mental Health Hotline at 988.
• Visit Help in Tough Times for a list of resources that can help you when you are feeling stressed or having a difficult time.

If you have specific concerns about your recovery or overall health, talk with your transplant team.

How can I avoid getting sick after my heart transplant?

After transplant, you have a higher chance of getting an infection.

It is important to take steps to protect yourself from getting sick, like:

• Wash your hands, and have your family and friends wash their hands frequently.
• Avoid contact with people who are sick.
• Try to avoid crowded places, especially in the first 3 months after transplant, during respiratory virus season (usually the fall and winter months), and for 3 months after being treated for rejection.
• Consider wearing a mask in crowded places.
• Stay up to date on all immunizations. Never take any live vaccines after you have received a transplant. Usually, you should not get any vaccines until 3 to 6 months after your transplant. Talk to your transplant team before getting any immunizations. Encourage family members to keep their immunizations up to date.
• Take good care of your teeth and gums and have regular dental examinations and cleanings. Talk to your transplant team about the need for antibiotics for any dental appointments. Do not have any routine dental work done in the first 6 months after your transplant.
• Protect yourself from mosquito bites to prevent West Nile virus. You can do this by avoiding being out at dusk and dawn, wearing light clothing including long sleeves and pants, and by using mosquito repellent with DEET.
• Avoid working in the soil for 6 months after your transplant. After 6 months, wear gloves, pants (not shorts), and other coverings to protect your skin from contact with the soil. Wear a mask when mulching or digging in the soil and generating dust. Avoid other activities that create a lot of dust, like construction or excavation.
• Take steps to prevent sexually transmitted infections, and avoid being exposed to feces during sexual activity.
• Avoid touching animal waste and cleaning animal cages or litter boxes. If you must handle or clean up animal waste, including mouse droppings, wear gloves and a mask. Keep your pets’ vaccinations up to date.
• Try to avoid your pet being close to your face, nose, and mouth, especially with their mouth. Don’t let your pet or other animals lick your open wounds. Some pets should be avoided. Talk to your transplant team for a list of these animals.
• Wash or peel fruits and vegetables and follow safe food handling practices for immunocompromised individuals . Do not eat raw or undercooked eggs, meat, fish and seafood, hot dogs, deli meats, or sprouts. Have only pasteurized milk and milk products, juices, ciders, and honey. Do not drink water from lakes or rivers. Speak to your transplant team about well water.
• Disinfect kitchens, bathrooms, and high-touch spots often. Change kitchen and bathroom linens frequently.

Watch for possible signs of infection:

• temperature greater than 38°C (if you are taking prednisone, watch for a temperature of 37.5°C or higher)
• sweating, chills, and shaking
• shortness of breath
• cough that creates mucus
• sore throat or runny nose
• pain, change in skin colour, or swelling (anywhere)
• change in colour, amount, and smell (odour) of your urine (pee) or stool (poo)
• burning when you pass urine (pee)
• open sores that have drainage
• nausea, vomiting, or diarrhea

You will be given medicines for a period of time after your transplant to help prevent common infections after transplant.

Call your transplant team to report signs of infection. If your transplant team is not available, call the nurse advice line in your area (in Alberta, call Health Link at 811).

If you have shortness of breath, chest pain, uncontrolled high fever, or any other severe symptoms, go directly to your nearest emergency department.

What is rejection?

Rejection happens when the transplanted heart is attacked by your own immune system. The best way to prevent rejection is to take your anti-rejection medicines on time, take the right dose, and complete lab work as scheduled.

It is very important to watch for any signs of rejection so that your doctor can treat it quickly. If it is caught early, rejection can often be reversed.

Possible signs of rejection may include:

• fever
• fatigue or weakness
• nausea, vomiting, or diarrhea
• shortness of breath
• persistent or worsening cough
• irregular or rapid heartbeat
• swelling in the legs, ankles, or stomach
• sudden weight gain
• low blood pressure or dizziness
• symptoms like you had prior to your transplant

There can also be rejection without symptoms.

You are most at risk of rejection during the first year after your transplant. You will have many routine heart biopsies to watch for rejection. When your transplant team starts doing biopsies, you will have a biopsy every week for 1 month. After that:

• In months 2 to 3, you will have a biopsy every 2 weeks.
• In months 4 to 7, you will have a biopsy every month.
• In months 8 to 12, you will have a biopsy every 2 to 3 months.

At any time, if the transplant team thinks you have rejection, you will have a heart biopsy to confirm. You may also have other tests like an ultrasound of your heart (echocardiogram), an electrocardiogram (ECG), and a heart MRI.

If rejection is confirmed, your transplant team will increase the doses of your anti-rejection medicines and may give you different medicines. Some patients need to be admitted to the hospital for further diagnosis and treatment.

Some heart transplant patients develop what is called coronary artery vasculopathy (CAV) or long-term rejection. This occurs when the vessels of the transplanted heart become partially or fully blocked. Angiograms are used to look for long-term rejection.

Long-term rejection is not reversible, but there are ways to try to slow down the process, like changing the dose or type of your anti-rejection medicines. The best way to prevent long-term rejection is to:

• take the right dose of your anti-rejection medicines on time
• complete lab work as scheduled
• manage heart disease risk factors like diet, exercise, weight, blood pressure, cholesterol, stress, and diabetes

The risk of rejection never goes away and rejection can happen at any time.

Talk with your transplant team if you have any symptoms, questions, or concerns about rejection.

What is heart denervation?

During heart transplant surgery, the nerves that send information from your heart to your brain must be cut. This means:

• You are unlikely to feel chest pain (angina).
• Your heart rate (pulse) may stay higher than typical heart rates. This does not need to be slowed down with medicines.
• You will need to do a good warm up before exercise to tell your heart to beat stronger. A good cool down is also important.

What can I know about the donor?

When you receive a heart transplant, the heart is given to you without the donor’s name, sex, age, location, or any other details. This is to protect information about you, the donor, and the donor’s family.

There is a letter writing process to say thank you to the donor family. In most cases, donors’ families are happy to get these letters.

The transplant team will check your letters to make sure they follow privacy rules. They will let you know if anything needs to be changed. If you need help writing a letter, ask your transplant team.