​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, lung function and other tests. This is to prevent rejection and minimize other potential complications.

If you live outside of the Edmonton area (except for Manitoba recipients), you and your support person need to be prepared to stay in Edmonton for 3 months. You are responsible for your own living costs during this time. If you need assistance, a transplant social worker is available during regular office hours to help guide you.

Your transplant team will follow you closely. Your follow-up appointments and tests may take up a lot of time.

Make sure you and your support person have a way to get to and from your appointments, as you may not be able to drive yourself. You will not be able to drive for approximately 3 months after your surgery. 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 is different for everyone.

You will need to go to appointments to see your lung transplant team. How often you visit the clinic depends on your medical needs. There will be many visits during the first year. For your clinic visits, have the following ready to bring with you:

• your medicines for the day
• your medicine list
• your records of weight, blood pressure, and heart rate
• your microspirometer readings
• 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 and lung function tests after you leave the hospital. How often you need bloodwork and tests 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.

To monitor your transplant, you may also need other procedures like a bronchoscopy and other lung imaging.

You will need to attend physiotherapy and occupational therapy appointments.

Things to remember:

• Use your home microspirometer (you will hear it called “blows”) every day and record your results. Your coordinator will give you a microspirometer and teach you how to use it. You will need to pay for the microspirometer. Talk to your transplant team if you have concerns about the cost.
• Do not lift anything heavier than 10 pounds for 3 months after your surgery. This may include heavy grocery bags and milk containers, a heavy briefcase or backpack, cat litter or dog food, a vacuum cleaner, or a child.
• Do not immerse your incision (surgery cut) in water for 3 months after your surgery or until the incision is fully healed, whichever is longer.
• Wait 6 weeks after your surgery before resuming sexual activity, or until your incision is fully healed, whichever is longer.

Sometimes you may need to go back to the hospital and be admitted again for further care.

If you live outside the Edmonton area, your care will be transferred back to your home program once you are physically and medically well enough.

As your recovery continues, your lung transplant team will focus on the medical issues directly related to your lung transplant. Your family doctor will continue supporting your overall health. The transplant team and your family doctor will communicate with each other.

Many transplant patients have shared that recovery is rarely a straight path—it often comes with twists and turns. Setbacks after transplants can happen. But once they are recognized, you and your transplant team can manage them effectively.

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

Some general recommendations to help with your recovery and overall health include:

• Eat a balanced diet and maintain a healthy weight. Your transplant dietitian can help you.
• Exercise regularly following the guidelines your therapists and transplant team give you. It is important to continue with your home exercise program.
• Avoid all tobacco or nicotine products, avoid smoking or vaping any substance (including cannabis), and avoid street drugs.
• 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 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.
• See a dentist regularly. Before any major work on your teeth or mouth, call your transplant team. To avoid the risk of infection, do not have any routine dental work done in the first 6 months after your transplant.
• Keep seeing your family doctor and any other healthcare providers for your general healthcare needs.
• See your eye doctor (optometrist) for routine check-ups.
• Stay up to date on your regular cancer screenings (prostate, colorectal, breast, cervical, and skin cancer). Anti-rejection medicines can increase your risk of some types of cancer.
• Buy a medical alert bracelet or necklace that says you had a lung 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 you don’t have any tests or appointments booked during your travel time. Consider travel insurance when making travel plans, even if your travel is 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 lung transplant?

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

It is important to take steps to protect yourself, 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 exams 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, or shaking
• shortness of breath
• cough that creates a change in your mucus
• sore throat or runny nose
• pain, change in skin colour, or swelling anywhere on your body
• change in colour, amount, and smell (odour) of your urine (pee) or stool (poo)
• burning when you pass urine (pee)
• open sores or wounds 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 a 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 lungs are 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. Rejection can often be reversed if it is caught early.

It is very important to watch for any signs of rejection so that your doctor can treat it quickly.

Possible signs of rejection may include:

• drop in home blows (measured by your microspirometer)
• persistent or worsening cough
• shortness of breath
• fatigue or weakness
• nausea, vomiting, or diarrhea
• fever

There can also be rejection without symptoms.

If the transplant team thinks you have rejection, you may need extra bloodwork, lung function tests in the lab, other lung imaging, or a bronchoscopy with lung biopsy. If rejection is confirmed, your transplant team will increase the doses of your anti-rejection medicines or give you different medicines.

Some patients need to be admitted to hospital for further diagnosis and treatment.

Rejection can happen at any time. Talk with your transplant team if you have any questions or concerns about rejection.

What can I know about the donor?

When you receive a lung transplant, the lungs are 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.

If you want to write to your donor’s family, there is a letter writing process to say thank you. In most cases, donor 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.