Patient Information

The Transplant Operation

Post Transplant

How can I reduce the chance of my transplanted organ rejecting?
  • Transplant medicines can be very complex, with a lot of medicines to take. The new routine can seem difficult but it is worth being very careful about taking the medicines correctly to give yourself and the new organ the best chance of success.
  • Sticking with the drug treatment and follow-up programme is essential to ensure the best chance of a successful transplant.
  • Most importantly, you will need to take your medication each and every day and in the exact way the transplant team tell you.
  • Never stop taking your medication even if you feel well.
  • You are always at risk of rejecting your transplanted organs.
  • Not taking your medication at the right time and in the correct amount is one of the common reasons for transplant failure.
What are the rules to help me prevent complications after transplantation?
There are some “golden rules” about your medications after transplant. Following these will help to give you the best chance of a successful transplant:

  1. Never stop or start ANY medicine without checking with the transplant team. YOUR treatment is individualised to YOUR condition. If you have concerns or problems with your medicines please discuss them with the team and do not alter your treatment yourself If you follow the rule of checking with us before taking new medicines then this will help protect you from interactions.
  2. We include “over the counter” non-prescription and herbal or alternative medicines in this rule. If you are considering taking any preparation, tablet, cream, inhaler, vitamin, patch, then you must check with the transplant team first.
  3. Avoid herbal medicines, “alternative” medicines, extra vitamin supplements, extra dietary supplements, homeopathic medicines, and herbal teas. No matter if they were bought over the internet, from a healthfood shop or even a pharmacy these may interact with your transplant medicines or cause kidney damage.
  4. Avoid grapefruit juice or grapefruit, also avoid pomelo (a fruit like grapefruit) and pomegranate. Many commonly used medications interact with transplant medicines- some examples include antibiotics such as Clarithromycin (also known as Klacid®) and Fluconazole (also known as Diflucan®), anti-inflammatory medicines eg Ibuprofen (Nurofen®) Mefanamic acid (Ponstan®) diclofenac (Difene®, Voltarol®), You must avoid these medicines. Remember do not stop or start a medicine without checking with the transplant team.
  5. Record your medications each day in the drug diary. Bring this book to each transplant clinic appointment and note any new instructions during the clinic. This will help to ensure that you are taking the correct medications each day.
  6. Keep your medicines in a safe place out of sight and reach of children.
  7. We recommend that you keep your medications in their original containers. This will help you to get to know your medications better. Some of the transplant medicines are sensitive to light and air and cannot be put into “pill boxes” or blister packs. Please talk to the transplant team before asking your community pharmacist to repackage your medicines for you.
  8. On clinic days do not take Prograf or Neoral until after your blood test, but please bring your medicines to clinic with you.
How do I make taking medicines a routine?
Establishing a routine and taking your medications exactly the way you are instructed is vital.

  1. It is important to get into a consistent pattern of taking your medication so think about what pattern will fit with your routine at home.
  2. Think about your work commitments, childcare, meals and prompts which will help you to “remember to remember” to take your medicines. It is important to get this pattern established in hospital. Your routine for taking medication must work seven days a week, so consider how you will manage at weekends when your routine may be different. This is why all the transplant team will be paying careful attention to you when you are taking your medicines.

To help you and your relative/carer in the process of self-medicating, we give you a book which is referred to as a “drugs diary”. This is a diary where you should:

  1. Record all your drugs, the dosage and times to take them.
  2. Record any concerns or anything significant that you feel needs to be recorded.
  3. You must bring this book to transplant clinic with you.
  4. You will be taught about all the medications and the reason for taking them, and you will learn to take them under supervision while you are in hospital.
  5. You will then be able to continue this when you go home.
    You are responsible for making sure you do not run out of your medications.
  6. You can contact the Transplant Unit for advice in an emergency.
  7. You will be given a one week supply of medications at discharge, and prescriptions for your usual pharmacy.
  8. The transplant team will continue to prescribe immunosuppressants for you but you will need to get prescriptions for the other medications from your GP.
What medicines will I take?
  1. You will have to take medicines to keep you healthy and prevent rejection and infection. You will be taking immunosuppressants (medicines to stop rejection) antibiotics and medicines to prevent some complications of transplant.
  2. You must always take your medicines as you have been instructed.

Here are some important points to remember about your medicines:

  1. The drugs and doses have been individually selected for you; follow the instructions very carefully.
  2. Never miss a dose or change the amount you are taking unless you are instructed to do so by your Transplant Team.
  3. Not taking your medicines at the right time and at the correct dose can cause transplant failure.
  4. Certain food products can interfere with your drug therapy e.g. grapefruit juice.
  5. All medicines have side-effects, some minor, some more unpleasant. If you are troubled by side-effects talk to the Transplant Team or your general practitioner.
  6. Drug therapies change as new research is carried out.
What are the main Immunosuppressive medicines used after transplant?
After your transplant you will need to be on immunosuppressive drugs for the rest of your life. These drugs help to stop your body from rejecting your new organ, but also increase the risk of infections and may cause other side-effects. The risk of developing certain cancers may also be increased. There are a number of immunosuppressive drugs available. A combination will be chosen to suit you.

  1. Ciclosporin (Neoral ®) or Tacrolimus (Prograf®)
    1. These are immunosuppressive drugs which require regular blood tests to check the level in your blood. The dose is then adjusted to suit you personally over a period of time and it is important that you take it exactly as you have been instructed.
    2. You will be taking one of these two medications- it is important that you stay on the same brand unless the transplant team change it. This is because different brands may be absorbed differently.
    3. The dose is taken twice daily at twelve hourly intervals at 10am and 10pm.
    4. There are several strengths available so that your dose can be adjusted. Be careful to take the correct dose as the packaging may look similar.
    5. Food can affect the absorption of these medications; you may take these medications with or without food but it is important that you are consistent. If you usually take Creon® we may ask you to take some Creon at the same time to improve absorption (this predominantly applies for patients with CF or chronic pancreatitis).
    6. If your stomach is not working well we may advise you to open the tacrolimus capsules and put the powder under your tongue.
    7. The capsules are stored in a protective foil covering. Do not remove the capsule until you are ready to take it.
    8. Do not drink grapefruit juice or eat grapefruit.
    9. Herbal products can alter levels in an unpredictable manner and must be avoided.
    10. On clinic days please do not take your Prograf/Neoral until after the blood sample has been taken as blood levels will indicate if a dose change is required.

    What are the side-effects of ciclosporin or tacrolimus?

    1. A slight shaking of the hands, and muscle cramps. Drinking orange juice or tonic water can help reduce cramp pain.
    2. Hot tingly hands and/or feet (usually during the first week of treatment).Changes in body hair. Do not use electrolysis as it can increase the risk of infection. Use a hair removing cream or a cosmetic bleach.
    3. Swollen or bleeding gums. Good oral hygiene may help to prevent this.You should also see a dentist regularly.
      Nausea, vomiting.
    4. Gout (swollen, hot or painful joints) – there are medicines to treat this, please check with the transplant team as not all are suitable for transplant patients.
    5. High blood pressure. Can be treated with medicines.
    6. Decrease in kidney function.The dose is adjusted over time to minimise this problem.
    7. Increase in blood sugar levels.
    8. Increase in cholesterol levels.
  2. A. Mycophenolate mofetil /Mycophenolic Acid
    • Mycophenolate mofetil is an immunosuppressive drug used as an alternative to azathioprine.
    • Mycophenolate is available as a liquid 1g/5ml, 250mg capsules and 500mg tablets, Mycophenolic acid is available as 180mg and 360mg capsules.
    • The capsule/tablet should be swallowed whole, and taken twice daily at twelve hourly intervals at 10am and 10pm unless otherwise directed.
    • Take with or after food to reduce the chance of stomach upset.
    • There are different brand of mycophenolate mofetil available – it is ok to take different manufacturers’ brands.

    What are some possible side effects of Mycophenolate Mofetil/ Mycophenolic Acid?
    Side-effects of Mycophenolate include:

    • Upset stomach including diarrhoea, nausea and vomiting – minimized by taking with food.
    • Mycophenolate can also cause blood disorders that put you at risk of infection and bleeding. You should report any unexpected bruising or bleeding.
    • Regular blood tests are undertaken and the dose ofmycophenolate altered accordingly.
    • You must ensure that you do not become pregnant while taking this medicine. Also female partners of male patients treated with these medicines should avoid becoming pregnant during treatment and for at least 90 days after the last dose.
  3. B. Azathioprine
    • Azathioprine is an immunosuppressive drug used as part of the combination regime.
    • Azathioprine is available as a branded preparation called Imuran®. other manufacturers’ tablets can also be taken as well as the branded product.
    • It is usually taken once a day, with or after food to reduce the chance of stomach upset.
    • A medicine used to prevent gout, called allopurinol, interacts with azathioprine and when used together your azathioprine dose will need to be reduced by your Transplant Team.

    What are some possible side effects of azathioprine?

    • Nausea, vomiting and diarrhoea (minimized by taking with food).
    • Liver disorders – this is monitored by blood tests.
    • Blood disorders that put you at risk of infection and bleeding. You should report any unexpected bruising or bleeding. This is monitored by blood tests
    • Rashes and hair loss can also occur rarely.
    • Regular blood tests are undertaken and the dose of azathioprine altered accordingly.
  4. Steroids
    • Prednisolone:
      Prednisolone is usually taken as a single dose in the morning with or after breakfast to reduce the risk of stomach irritation. The dose will be high at the start but will be reduced every few days/every week.
      You must never stop taking prednisolone abruptly – and never run out of tablets.
      Steroids are sometimes given by injection to treat acute rejection.
      What are some possible side effects of steroids?

      • The high doses of steroids taken soon after the transplant can affect your mood, you may feel grumpy or irritable.
      • You may find yourself eating more while you are on steroids.
      • Steroids may increase your blood sugar, in some cases this may need to be treated with insulin.
        Osteoporosis – you will be put on medicines to prevent this.
  5. Anti-infectives/antibiotics
    The immunosuppressive drugs help to stop your body from rejecting your new organ but also make you less able to fight infections.To try to prevent various infections occurring we use a combination of medicines.
  6. Antibiotics
    Co-trimoxazole (Septrin ®)
    Co-trimoxazole is an antibiotic. It is used at a low dose to
    prevent a type of pneumonia called Pneumocystis.
    It is taken as directed by the transplant team and is usually life long treatment
    Side-effects include: Nausea, and occasionally skin
    rashes.
    Colistin
    You may be started (or restarted) on colistin via a nebuliser to reduce the amount of bacteria in your lungs, it is very important that you make time to take this medication twice daily as prescribed.. You may not use the nebuliser you had before the transplant as this can lead to re-infection of your lungs. You will have to get a new nebuliser and you may have to pay for this yourself.
    Azithromycin
    This antibiotic has many uses and can improve lung function and help to prevent rejection. It may cause nausea.
  7. Antivirals
    These may only be needed for a few months after transplant to reduce the risk of viral infection. The transplant team will advise you when these may be stopped.
    Aciclovir
    Aciclovir is used to prevent viral infections which can cause cold sores, shingles and chickenpox.
    Ganciclovir/Valganciclovir
    Ganciclovir and/or valganciclovir are used to treat or prevent cytomegalovirus (CMV) infections (see Section 5) in some patients.
    Valganciclovir tablet
    Valganciclovir tablets should be taken with food.Side-effects include: Blood disorders (these are monitored closely), reduction of fertility (in both men and women), nausea and vomiting and headaches; some patients suffer abdominal pain and constipation.
    You must ensure that you do not become pregnant while taking this medicine. Also female partners of male patients treated with these medicines should avoid becoming pregnant during treatment and for at least 90 days after the last dose.
  8. Antifungals
    Voriconazole
    Is an antifungal drug used to prevent and /or treat fungal infections.You may be prescribed Voriconazole depending on your condition.
    The dose is adjusted according to your weight and size.
    The tablet should be taken at least one hour before or one
    hour after food.
    Voriconazole can alter blood levels of ciclosporin ,tacrolimus or sirolimus; we will reduce your dose if we start you on voriconazole and check your blood levels more often if voriconazole is started.
    Side-effects include: Headache, dizziness, feeling sick, anxiety and flu-like symptoms.
  9. MouthCare
    The mouth contains bacteria which can infect the lung so it is important to follow good practice for mouth care. This will help to reduce the spread of bacteria into your lung.
    Chlorhexidine Mouthwash
    Chlorhexidine is used to help prevent, and treat, infections of the
    mouth and helps inhibit the formation of plaque on teeth. You can continue using this lifelong if you wish.
    Nystatin Drops
    Nystatin is a mouthwash used to prevent fungal infections. .It is usually discontinued a few months after transplant.
    It should be used after chlorhexidine mouthwash so that the medicine works in your mouth for longer.
  10. Painkillers
    Most patients experience some discomfort after the operation and there are a number of painkillers which can be used to help during this period. Immediately after surgery you may be on a pain killing injection into the spine (epidural).As soon as you can eat and drink this will be changed to other pain control medication. You may be discharged home on paracetamol, opioid (morphine) type pain killers and some medicines for nerve pain. These will be reduced as your condition improves. If you are discharged on fentanyl patches please follow the instructions for disposal carefully.
  11. New Medications
    Transplant medications are very powerful and can have several unwanted effects on the body. Some patients develop high blood pressure, diabetes or osteoporosis as a result of the medication.
How will I prevent Osteoporosis?
You are at risk of osteoporosis after transplant and will need to take medication for life to prevent this. Usually this will include calcium and vitamin D twice daily and a once weekly medication to make the bones stronger.

The once weekly medication (e.g. alendronate) should be taken half an hour before breakfast with a glass of water. You should then remain sitting or standing until breakfast. This will ensure that the medication gets into your stomach and is absorbed into your body fully.

Weight bearing exercise is also important for healthy bones.

What happens if I get high blood pressure?
High blood pressure is common after transplant.
These are examples of medications that may be prescribed to lower blood pressure.

  • Calcium channel blockers:
    e.g. Amlodipine, Lercanidipine
    Possible side-effects may include swelling of lower legs, impotence, headaches, flushing, tiredness, stomach upset, skin rash.
  • ACE inhibitors:
    e.g. Ramipril or perindopril
    Possible side-effects may include stomach upset, changes in kidney function, dry cough, taste disturbance, sleep disturbance, dizziness when standing up, skin rash.
  • Alpha blockers:
    e.g. Doxazosin ( Cardura ®)
    Possible side effects include swelling of lower legs, stomach upset, dizziness, light headedness, skin rashes.
  • Diuretic Medicines (Water Tablets):
    These medicines help your body to get rid of excess water.Youwill pass extra urine after taking these tablets
    e.g. Furosemide or Bumetanide.
    Possible side-effects include changes in your blood
    chemistry, stomach upset, gout, and muscle cramps.
Could I get diabetes after the transplant?
It is possible to develop diabetes as a result of the transplant medications. You can manage diabetes with diet or tablets or you may have to take insulin by injection. You may have to check your blood sugars several times daily.

Good management of blood sugars is very important and you will receive training from the diabetes nurse specialist and may have outpatient appointments with the diabetic team.

If you had CF related diabetes prior to transplant the new medications may make blood sugars more difficult to manage and you may have to alter your diet and dose insulin in a different way than before. You will receive advice about this from the transplant team and the diabetic team.

Why do I need to take medicines for cholesterol?
These medicines are used to lower cholesterol that may be raised as a side-effect of some immunosuppressants.

There is a variety of lipid-lowering medications; the most
commonly prescribed is Atorvastatin.

If you have any unexplained muscle pain, tenderness or weakness it
should be reported to a doctor immediately.

I feel sick from all the medicines, what can help?
Anti-ulcer medicines/Anti acid medicine
Immunosuppressants can increase the risk of developing stomach ulcers and acid reflux/heartburn which can damage a new lung.

These medicines reduce the amount of acid in the stomach and
can help prevent and treat ulcers and heartburn – these are usually required life long.

Names of these medicines include esomeprazole, lansaprozole or pantoprazole

Possible side-effects include diarrhoea, constipation, passing
wind, stomach upset, skin rash, dizziness, headache, and changes
in liver function.

Anti-emetic (anti-sickness) medicines
Many medicines can cause nausea and vomiting. These are some
of the treatments available to alleviate these symptoms.

The most commonly used anti-sickness medicines in transplant are metoclopramide and domepridone.

These medicines help to prevent reflux (food coming back up from the stomach)
Possible side-effects include drowsiness, diarrhoea, skin rash.

Laxatives
It is very important to avoid constipation as this will prevent absorption of your medications and put you at risk of rejection and kidney problems. It will also make you feel sick.

If you notice that you are getting constipation contact the clinic for advice and start your usual laxatives.

What about the other medicines I took before transplant?
You may need to restart other medications that you have been taking for example if you have Cystic fibrosis you will need to restart Creon, vitamin supplements, ursodeoxycholic acid, nebulised antibiotics.
Will I be taking the same medicines forever? I met another transplant patient today who was on different medicine to me?
Treatment and therapy will change over time as we learn more from research and gain more experience. Having a transplant is uniquely individual to each patient.

Your treatment and drug dosages may be quite different from another patient who has had the same operation as you.

Remember to always take the medicine that you have been prescribed.

Read any instructions carefully.

Never take other medications before double-checking with the transplant team.

Please ask the transplant team for advice.

Vaccination requirements for transplant patients
We recommend that all patients who are awaiting transplant or have had a transplant have annual influenza vaccine each year and Pneumococcal Vaccine every five years.

Not all vaccines can be given to transplant recipients and care needs to be taken to avoid the LIVE vaccines. Remember that as your immune system is suppressed you may not have full effect from any vaccine and you should not assume that the vaccine has been effective.

Please check with the transplant team if you have questions about travel and vaccines.

Will I need to modify the way I eat after a lung transplant?
After having a lung transplant, you will be taking immunosuppression drugs to prevent rejection. This medication can lower your body’s natural resistance to infection and infectious disease. In order to help reduce the risk of you developing food poisoning (gastroenteritis), special attention needs to be made to food safety and hygiene. This way of eating is sometimes referred to as following a ‘clean diet’.

Ensure that the kitchen and food preparation areas are kept very clean. Food items need to be stored correctly and used within use-by dates. Dish clothes and tea towels need to be washed daily. Use separate chopping boards for raw meats and vegetables or breads.

It is advised that you avoid certain high risk foods such as raw meat, raw fish, unpasteurised cheeses and raw egg. The transplant team also recommend that you avoid drinking water straight from the tap (or lakes/rivers). Water must be boiled first or choose bottled water. The transplant dietitian will discuss this with you in detail prior to your discharge from hospital.


HEART EXAMINATIONS

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History of Lung Transplants


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