After you leave hospital, you will usually need to will go back to your transplant unit each week initially. The care from the transplant team is gradually reduced depending on how you are doing and any complications you may have, and your care may eventually be taken-up by your local hospital. For those who live many hours away from the unit, there are special arrangements in place with selected local hospitals.
After your liver transplant, you will have to take immunosuppressants to help your body accept the new liver and prevent it from rejecting it.
Initially you may be prescribed three different types of immunosuppressants such as: Tacrolimus, Azathioprine and Prednisolone, but over time many patients will just take one and/or be switched to a different type of immunosuppressant. All immunosuppressants do carry side effects which will be explained to you during your transplant assessment and again before you leave hospital. Your doctors will aim to reduce your immunosuppressants gradually a few months after your transplant. This takes some fine-tuning because rejection needs to be avoided and so reducing the dose is done slowly.
You will need to take immunosuppressants for life and the goal is for you to be on the minimum dose possible, and it is very much an individual matter.
There is no evidence for this. Perhaps what is more important is that often doctors change medications to prevent complications from the drugs. The transplanted liver is very good at coping after a transplant and doctors are realising that smaller doses of immunosuppressive drugs can be used in liver transplant patients than in people who have had heart or kidney transplants. Doctors often use additional drugs to counteract some of the side effects caused by the immunosuppressant drugs.
This is unlikely, as the risk of rejection actually decreases over time and usually doctors tend to gradually decrease the dose of your anti-rejection medication over time, if possible. Changes in your immunosuppression may be driven by other conditions such as side-effects or changes in your general health/status, which will be carefully evaluated by your transplant doctor.
Protocols vary from transplant centre to transplant centre and there are no specific guidelines on dental care after liver transplant. However, good dental hygiene is important if you have had a liver transplant because small infections in the mouth can spread to the rest of the body and anti-rejection medications (immunosuppressants) can increase the risk of infection.
For this reason, you may be asked to visit your dentist before you’ve had your transplant to ensure your mouth is as healthy as it can be. After you have had your transplant, speak with your transplant coordinator before visiting your dentist and always let your dentist know that you have had a liver transplant and exactly what medications you are taking 84-86 .
- Complications with the bile duct joins
- Increased risk of infections and picking up bugs
- Kidney problems over time due to Tacrolimus
- Slight increased risk of cancers over time due to the immunosuppressants
- Recurrent PSC (rPSC)
Your doctors will monitor you carefully following your transplant to manage any issues that may arise.
Is there a definitive list of foods to avoid after transplant?
Each transplant centre has slightly different guidelines regarding what you can and can’t eat. Your transplant coordinator/dietitian will guide on you their recommended list of foods to avoid or take care with. Initially, post-transplant most patients will be asked to follow a high protein and high energy diet to help their body recover. You are encouraged to eat a healthy balanced diet.
Standard advice usually includes:
- Avoiding of shellfish, sushi and any raw fish; any who are bottom feeders in the sea such as mussels, clams and whelks
- Ensuring all dairy products are pasteurised
- Avoiding soft cheeses such as brie, camembert, blue-veined cheeses and some goats cheeses. Cheeses are ok if they have been cooked (to kill off any bacteria)
- Ensuring eggs are cooked thoroughly. Do not eat any food from recipes using uncooked eggs i.e. homemade mousse, eggnog, mayonnaise or ice-creams/sorbets
- Avoiding pate and meat paste
- Avoiding grapefruits, Seville oranges, pomelo fruits and pomegranates as they can interfere with your immunosuppression medication. You must also avoid foods which contain these foods such as Seville marmalade
Following good food safety practices especially around food storage and preparation is important. When eating out you need to take more care; buffet food is often discouraged due to the spread of germs (unless you’re first in the queue!), ensuring all food is cooked thoroughly, checking if the cheeses on the cheeseboard are pasteurised or any dishes which may be home-made and contain raw egg or unpasteurised dairy products. If in doubt, either avoid it or ask but don’t let it put you off eating out and enjoying food.
The hospital dietitians and transplant coordinators will be able to answer any queries you have. Don’t be afraid to ask.
Can I drink alcohol after liver transplant?
Many people choose to abstain as they worry it may affect their new liver. However, some will choose to have small amounts of alcohol or the occasional glass or two. Check with your own doctor to be sure.
It is highly recommended that you do not smoke after you had a transplant. Smoking carries many health risks (in particular cardiovascular disease and respiratory problems). Furthermore, in patients who had a liver transplant, smoking is associated with an increased risk of developing hepatic artery thrombosis (blockage of the blood support to the new liver), biliary complications and cancers (i.e. lungs, skin, mouth).
If you recover well after the transplant, you may be driving as soon as 6 months after your transplant. However, this depends on how well you are generally, on your ability to do sudden movements (i.e. sudden stops), on the level of pain you may experience, etc. Always discuss this with your doctor: it’s a matter of safety for yourself and other people.
How soon you return to work depends on how your new liver functions and any complications you may have. A liver transplant is a major operation and it takes time to build up your regular activities and get back to work. Some people return in a matter of months, others much longer. In some cases, you may start, for instance, with a part-time activity.
In 2018 a small poll was carried out on our Facebook group which asked post-transplant PSC patients how long it was before they returned to work:
- 6 returned to work within 3-4 months
- 3 returned to work within 4-5 months
- 8 returned to work within 6-8 months
- 3 returned to work over 8 months
- 3 returned to work decided not to go back to work.
There is no set rule about when you should be able to resume work, and everyone is different.
The medications you take post-transplant can increase your chances of developing skin cancers. You will be advised to cover up with a hat and suitable clothing, avoid the midday sun and wear a high factor sunscreen SPF 30-50+ with good UVA and UVB cover. We all need a bit of vitamin D so some exposure is fine if you’re careful and cover up. Having a transplant doesn’t mean you have to spend the rest of the summer hiding indoors or in the shade.
Most transplant centres advise people not to travel out of the UK until at least six months after their transplant, and not outside Europe until after a year.
If you are unsure about travelling or have complications whilst you are away from home, check with your doctor or transplant coordinator. It’s also a good idea to make sure you know where the nearest medical centre is at your destination.
Please be aware that travelling to some countries may be restricted post-transplant, especially if certain vaccinations are required, and you haven’t already had those.
Our travel section includes information about the IBD passport. This is useful to read even if you don’t have IBD because it gives information on travelling when you take immunosuppressants.
You will always have your scar but it will usually fade over time and become less noticeable.
This video was taken from Professor Michael Heneghan's presentation to primary sclerosing cholangitis patients at our London 2019 Information Day. This video covers:
- Pregnancy in PSC
- Gallstones in pregnancy
- Cirrhosis and pregnancy
- Transplantation and pregnancy
- Contraception post-transplant
We love to see people who’ve had transplant for PSC take part in Transplant Games. Do get in touch if you’re involved.
Our Facebook group regularly has updates from people who have had transplants for PSC, who go on to enjoy and experience wonderful things - take a look.
Because organ donation is confidential, your transplant coordinator can only disclose limited information such as your donor’s age and sex. Your transplant coordinator will ask you if you would like to know this information. This is a personal choice and you should do what feels right for you. If you decline, you can always change your mind later if you wish.
Yes. If you want to write to your donor’s family, you can do so. Your letter is passed to your transplant coordinator who will let the family know that there is a letter from you. It can be a moving experience for both you and your donor’s family. People who have had a transplant often say that this letter is difficult to write and that it can take a long time before they are ready to begin.
Over two thirds of normally discarded livers could be improved and used in transplantation thanks to machine perfusion technology.
Max and Keira’s Law – the Organ Donation (Deemed Consent) Act, has come into effect today, 20 May 2020
We are facing a serious funding crisis, yet people with PSC are relying on our services more than ever and we are continuing to provide support and information throughout this uncertain time. To help fund our vital services we need your support more than ever. Your contribution, however small, will go a long way. Thank you.