Once you get home

Your questions answered about life after liver transplant

Clare Once you get home

How often will I need to go back to the transplant unit?

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.

What medicine will I need to take after transplant?

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.

Are some immunosuppressants more or less effective with some people?

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.

Can the immunosuppressants become less effective over time?

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.

Do I need to tell my dentist I have had a liver transplant?

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 .

Are there any long-term considerations for liver transplant?

  • 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.

How long is the typical recovery period?

It is generally accepted that the fitter and healthier you are before you have your transplant, the quicker your recovery. However, this is not always the case and there are sometimes complications. Some people recover quickly and feel ready to resume everyday activities within a few months post-transplant but this varies from person to person.

How soon can I return to work?

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.

How soon can I drive after the transplant?

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.

Can I smoke after liver transplant?

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).

Can I still go in the sun after my transplant?

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.

How long do I have to wait after transplant before I can travel or holiday abroad?

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.

Will my scar ever fade?

You will always have your scar but it will usually fade over time and become less noticeable.

What next? The world is your oyster!

You’ve had your transplant, why not work towards being a world champion? The British Transplant Games take place every year. Aim higher and join the World Transplant Games!

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.

Will PSC come back after transplant?

PSC does sometimes come back after transplant. It is called recurrent PSC (rPSC). It is difficult to say how likely PSC is to return for any individual because rPSC is not easy to tell apart from other post-transplant complications that can mimic PSC and therefore not consistently recorded in health records. Research tells us it can return in anywhere between 6% and 60% of patients although a frequency of around 20% is most often seen 2.

It is important not to worry that a sudden increase in liver blood tests means that rPSC has developed. Many factors can affect blood test results after transplant and your transplant unit will be used to dealing with this.

There is evidence to suggest that keeping an end ileostomy following colectomy (that you may have had before transplant for IBD) may be protective to the liver following transplantation for PSC 87. Research is ongoing in this area looking at the impact of colectomy type following transplant.

How many transplants can a person have?

There is technically no limit, but the risks do increase as the number goes up. It would be unusual for a person to have more than 3 transplants, but each case is considered on its own merits.

Urgent Appeal

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.

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