Lifelong medication
After your transplant, you will need to take several medications for life.
- Always take your medication at the same time.
- Never miss a dose of your immunosuppressive medication.
- Fill out your medication log daily and bring it to every check-up.
Did you nevertheless miss a dose (or several doses)?
- If so, contact the transplant nurses in the day room.
- On weekends or at night, contact the transplant unit.
Taking extra medication
Never take extra medication on your own initiative, not even on your GP's prescription. Always consult the day room first.
Medication supply
You are responsible for managing your medication supply. Ensure you have enough prescriptions between each follow-up at the day hospital.
- Regularly check your supply of medication.
- Note any medication you no longer have enough of on the medication list.
- All medication can be purchased from our pharmacy, except for these exceptions.
Do you have insufficient medication to last until your next follow-up?
- Request a prescription from your GP.
- Or call +32 16 34 13 65 or e-mail us.
Follow-ups in the pulmonology day room
After your transplantation you will be closely monitored in the pulmonology day room for the rest of your life: twice a week at first, then once a week, gradually decreasing to a check-up every 3 to 4 months.
Annual admission
For the first two years after your transplant, you will be admitted once a year for a comprehensive post-transplant examination, around the anniversary of your transplant.
During the admission, additional tests will be performed to assess the condition of the transplanted lungs (and heart, if applicable) and evaluate the effect of anti-rejection medication on other organ systems.
After two years, admission is no longer necessary, but additional tests will be performed once a year during your follow-ups in the day room.
Follow a rehabilitation programme
To make the most of your new lungs in daily life, it is important to follow a rehabilitation programme.
- An exercise programme tailored to your needs
- Mainly cycling and walking, supplemented by specific exercises
- 3 times per week
- With personal guidance
- Up to 6 months of rehabilitation
Research shows that this programme improves quality of life, exercise capacity, and physical activity in lung transplant recipients.
Healthy living with new lungs
Feeling well after a transplant depends on many factors. Some you have little or no control over, such as rejection, infection and side effects of medication. However, there are many things you can do to improve your health, such as adhering to your treatment plan, maintaining a healthy and varied diet, exercising and knowing when to seek appropriate and professional care.
Treatment adherence
Adhering to treatment means following medical prescriptions and applying the recommendations of your transplant physician.
- Follow prescriptions even during holidays or changes in your routine.
- Respect the dosage and timing of your medication.
- Always take your medication around the same time of day.
- Consult the transplant team before taking any non-prescribed medication.
Rejection
The medication you take after your transplant affects certain parts of your immune system so that the normal immune process does not attack your newly-transplanted organ. However, it is not uncommon for your immune system to recognise and attack the transplanted organ. This is what we call "rejection."
Acute rejection
Acute rejection is the most common type of rejection and occurs when T-cells recognise the transplanted organ and initiate their response. The organ's function may be weakened or damaged during the episode of rejection. Acute rejection can be classified as mild, moderate, or severe. If detected early, most patients fully recover their organ function.
Chronic rejection
Chronic rejection can be caused by various factors. When chronic rejection occurs, we aim to stabilise it. Over several months or years, chronic rejection can lead to loss of organ function. Lung transplant patients may develop disorders in the small airways, known as bronchiolitis obliterans, which can result in breathlessness and frequent respiratory infections.
Disease and infection
The immunosuppressive medication you take reduces your immune system’s resistance, making you more prone to infections, especially during the first 3 to 6 months after your transplant.
Tips to avoid infections:
- Wash your hands.
- Avoid people who are sick.
- Avoid large crowds.
- Get enough rest.
- Avoid contact with pets.
- Recognise early symptoms of infection.
- Take your medication to prevent infections.
Physical activity
Aim to stay active for 30 minutes every day. This can include walking, cycling, light housework, or gardening. The best way to meet this goal is to incorporate physical activity into your daily routine, rather than relying solely on structured exercise.
Skin care
Skin cancer is more common in transplant patients because the immune system, weakened by anti-rejection medication, cannot repair sun damage. Skin cancer may appear as small red spots that may feel rough. Irregular brown spots or moles that change shape or grow larger should be examined by your transplant doctor and/or a dermatologist.
So regularly check your skin for new or changing spots. Ask your partner or a family member to check areas that are difficult to see, such as your back or the backs of your legs.
We recommend having your skin checked by a specialist once a year.
Dental care
Good dental hygiene is important because the immunosuppressive medication you take increases your susceptibility to infections.
After your transplant, it is best to wait six months before visiting your dentist.
After that, it is recommended to have a check-up twice a year.
However, if you experience dental pain, schedule an appointment with your dentist immediately.
Eye check-up
High doses of cortisone can have adverse effects on the eyes and vision. We recommend waiting a few months after your transplant before getting new glasses, allowing time for your vision to stabilise.
Any changes in your vision should be checked by an ophthalmologist.
We advise you to have your eyes examined once a year.
Bone loss (osteoporosis)
Osteoporosis is a condition where bones gradually lose minerals, particularly calcium, leading to weakened bone tissue. This makes the bones less resistant to stress and more prone to fractures (especially in the wrists and hips) or collapsing (vertebrae).
Smoking
Unfortunately, some patients resume smoking some time after their transplant. Smoking again is harmful to your health and significantly increases the risk of cardiovascular diseases and rejection.
After you are discharged from the hospital, you will be regularly monitored for smoking.
Passive smoking is also harmful to your health and should be avoided.
Alcohol and drugs
Excessive alcohol consumption is prohibited as it can damage the liver and interfere with the effectiveness of some medications you take. Drinking alcohol daily is therefore not allowed.
Occasional alcohol consumption (e.g., during a family gathering) is permitted.
- Limit your intake to a maximum of 3 units on such occasions.
- Never take your medication with alcohol.
Drug use is dangerous and also interferes with the immunosuppressive medication you take, greatly increasing the risk of rejection and loss of the transplanted organ.
Constipation
Constipation refers to infrequent, difficult, hard, painful, or slow bowel movements. Symptoms often include abdominal pain and bloating. It is a misconception that everyone needs to have a bowel movement daily. Each person has their own rhythm, and so do their bowel movements: some people go several times a day, while others only a few times a week.
If you frequently experience constipation, seek advice from your dietitian and/or transplant physician.
Diarrhoea
Diarrhoea consists of primarily loose, watery (sometimes mucus-filled) stools, accompanied by an urgent and more frequent need to go to the toilet. It is often accompanied by an unpleasant, pressing sensation in the abdomen, along with sudden cramps or abdominal pain.
When you have diarrhoea, medication is not fully absorbed by the intestines. This can lead to fluctuating blood levels, especially for immunosuppressive medication.
If you have had diarrhoea for 24 hours or more, contact the transplant nurse in the day room.
Sexuality, contraception and pregnancy
Sexual issues after a lung transplant are not uncommon. These can include impotence in men and the absence of menstruation or infertility in women. Sexual function usually improves progressively a few months after the transplant, and sexual relations are possible as soon as you feel better.
Most men regain potency a few weeks after the transplant. In most women, the normal menstrual cycle also returns a few weeks after the transplant, making pregnancy possible. However, pregnancy after transplantation is strongly discouraged due to potential risks for the unborn child and the mother.
If you are sexually active, it is strongly recommended to use contraception (e.g., condoms, intrauterine devices, the pill) to prevent pregnancy. Additionally, using condoms reduces the risk of sexually transmitted infections.
Immunosuppressive medication can affect the effectiveness of oral contraceptives. Discuss the most suitable contraceptive method with your transplant physician and/or gynaecologist.
Vaccination
Get vaccinated.
- Annually against flu
- Every 5 years against pneumococcal infections
- Every 10 years against tetanus
Detecting infection and rejection
Daily monitoring
To detect infections and rejection early, it is important to perform some tests regularly (1 to 2 times per day):
- Measure your temperature at the same time each day (e.g., morning and evening) and in the same body location. Record the value in your journal.
- Perform two spirometry tests (lung function tests) per day and note the results in your journal.
Feeling unwell?
- If your temperature is between 37.5°C and 38°C, check it every hour.
- If it rises above 38°C, contact the transplant nurse.
Are you suffering from the following symptoms?
- Shortness of breath
- Wheezing or a worsening, persistent cough
- Fever (> 38°C)
- Increased mucus production with a change in colour (from clear/white to green, yellow, brown, thick)
- A drop of more than 10% in your lung function (FEV1) compared to your normal values over 2–3 days
- Unusual fatigue
