Overview

A pancreas transplant is an operation to treat insulin-dependent diabetes. It gives someone with diabetes a healthy insulin-producing pancreas from a donor who's recently died. This means they can produce their own insulin and do not need to inject it.

Why pancreas transplants are carried out

A pancreas transplant allows people with type 1 diabetes (insulin-treated diabetes) to produce insulin again.

It's not a routine treatment because it has risks, and treatment with insulin injections is often effective.

A pancreas transplant is usually only considered if:

• you also have severe kidney disease – a pancreas transplant may be carried out at the same time as a kidney transplant in these cases
• you have severe episodes of dangerously low blood sugar levels that happen without warning and are not controlled with insulin

If your doctor thinks you might benefit from a pancreas transplant, you'll need to have a detailed assessment to check whether you're healthy enough to have one before you're placed on a waiting list.

What happens during a pancreas transplant

A pancreas transplant needs to be carried out as soon as possible after a donor pancreas becomes available.

The operation is performed under general anaesthetic, where you're asleep.

A cut is made along your tummy. The donor pancreas (and donor kidney, if you're having a kidney transplant at the same time) is then placed inside and attached to nearby blood vessels and your bowel.

The new pancreas should start producing insulin straight away. Your old damaged pancreas will be left in place and will continue to produce important digestive juices after the transplant.

Recovering from a pancreas transplant

You'll usually need to stay in hospital for around 1 or 2 weeks after a pancreas transplant.

Most people are able to get back to their normal activities within a few months.

Your transplant team can give you advice about how long you need to avoid certain activities during your recovery.

You'll have regular check-ups with your transplant team after the transplant.

You'll also need to take mediciness called immunosuppressants for the rest of your life.

Without these medicines, your body will recognise your new pancreas as foreign and attack it. This is known as rejection.

Risks of a pancreas transplant

A pancreas transplant is a complex and risky procedure.

Possible complications include:

• your immune system recognising the transplanted pancreas as foreign and attacking it (rejection)
• blood clots forming in the blood vessels supplying the donor pancreas
• shortlived inflammation of the pancreas (pancreatitis), usually just after transplantation
• side effects from the immunosuppressant medicine, such as an increased chance of catching certain infections, developing high blood pressure, and weakened bones (osteoporosis)

Many of these problems are treatable, although sometimes it may be necessary to remove the donor pancreas.

Outlook after a pancreas transplant

The outlook for people with a pancreas transplant is usually good. Most people live for many years, or even decades, after a pancreas transplant.

More than 9 out of 10 people are alive 1 year after having a pancreas transplant, or a pancreas and kidney transplant at the same time.

And almost 9 out of 10 people are alive 5 years after a pancreas transplant, or pancreas and kidney transplant.

The donor pancreas can be removed if it stops working, and it may be possible to put you back on the waiting list for another transplant.

Organ donation in Wales

Wales moved to a soft opt-out system for organ donation on 1 December 2015. Under the soft opt-out system, if you have not registered a clear organ donation decision (opt-in or opt-out), you will be treated as having no objection to being an organ donor. This is called 'deemed consent'.

It is called a soft opt-out system because your family will always be involved in all discussions about donation. They will need to be present to answer questions about your health, lifestyle and where you lived. They could also say if you knew you did not want to be an organ donor.

The Welsh Government website has more information on organ donation.

Why it is used

Preparations

Once you're assessed as being suitable for a pancreas transplant, you have to join the national waiting list. It's not possible to have one straight away because of the lack of available pancreases.

It may be several months, or possibly years, before a suitable donor pancreas becomes available.

In the UK, the average waiting time for a pancreas transplant or a combined pancreas and kidney transplant is 12 months.

You'll usually be able to stay at home until a pancreas becomes available.

The transplant centre can offer support, guidance and information while you wait for a suitable donor to be found.

Waiting for a suitable donor

While waiting for a donated pancreas to become available, it's important to stay as healthy as possible by:

• taking medicine that's prescribed for you
• keeping all your appointments with your healthcare team, including going to all your dialysis sessions (if you are on dialysis)
• having a healthy diet
• taking regular exercise, if possible
• not smoking
• not drinking too much alcohol

The transplant centre will need to be able to contact you at short notice, so inform staff if your contact details change.

You should also let staff know if your health changes (for example, if you develop an infection).

Prepare an overnight bag and make arrangements with your friends, family and employer so you can go to the transplant centre as soon as a donor pancreas becomes available.

Coping with being on the waiting list

Living with severe diabetes can be strenuous enough. The added anxiety of waiting for a pancreas to become available can make the situation even more difficult.

This can have an effect on both your physical and mental health.

Contact a GP or the transplant centre for advice if you're struggling to cope emotionally with the demands of waiting for a transplant.

You may also find it useful to contact a support group, such as Diabetes UK or Diabetes.co.uk, or a local kidney patients association if you're also waiting for a kidney transplant.

Getting the call

When a suitable donor pancreas is found, the transplant centre will contact you and ask you to go to the centre.  

When you hear from the transplant centre:

• do not eat or drink anything (unless your blood sugar is very low)
• take all current medicines with you
• take a bag of clothes and essentials for your hospital stay

At the transplant centre, you'll be reassessed quickly to make sure no new medical conditions have developed.

When the medical team has confirmed that you and the donor pancreas are suitable, you'll be given a general anaesthetic.

The procedure must be carried out as quickly as possible to have the best chance of success.

Transplant centres

Pancreas transplants are carried out at specialist transplant centres.

UK transplant centres that perform pancreas transplants are located in:

• University Hospital of Wales in Cardiff
• Addenbrooke's Hospital in Cambridge
• Churchill Hospital in Oxford
• The Royal Infirmary in Edinburgh
• Freeman Hospital in Newcastle
• Guy's Hospital in London
• Manchester Royal Infirmary
• West London Renal and Transplant Centre at the Hammersmith Hospital, London

How is it performed?

Pancreas transplants are carried out under general anaesthetic. This means you'll be asleep and will not feel anything during the procedure.

• A cut will be made in your tummy, from just below your breastbone to below your belly button.
• The donor pancreas is usually placed in the right side of your tummy and is connected to the blood vessels that carry blood down to your leg.
• A small portion of the donor's small intestine will be attached either to your small intestine or your bladder to allow digestive juices to drain from the donor pancreas.
• If you're having a combined pancreas and kidney transplant, the kidney will be placed low down on the left side of your tummy.
• The old pancreas will not be removed as it'll continue to produce digestive juices while the donor pancreas produces insulin.

A pancreas transplant operation can take 2 to 4 hours to complete.

If you also need a kidney transplant at the same time, the operation can take around 4 to 8 hours.

Your new pancreas should start to produce insulin straight away.

Islet transplantation

A small number of people with type 1 diabetes may have a slightly different procedure, where only the cells that produce insulin (islet cells) are transplanted from a donor pancreas into the liver.

This is called islet transplantation and is usually carried out under local anaesthetic, which means you're awake but the area being operated on is numbed. You may also be offered a sedative (medicine to help you relax).

A thin, flexible tube (catheter) is inserted through your tummy and liver into the vein that supplies the liver with blood. The donor islet cells are then injected into it.

If the operation is successful, the donor cells will start making insulin. This can help people who experience severe episodes of a dangerously low blood sugar level that occur without warning.

Insulin treatment is often still needed after the operation, but the episodes of low blood sugar should be easier to control.

.As with a conventional pancreas transplant, you'll need to take medicine to stop your immune system attacking the donor islet cells.

For more information, see the National Institute for Health and Care Excellence (NICE) guidance on allogeneic pancreatic islet cell transplantation for type 1 diabetes mellitus.

After the operation

Once the transplant is complete, you'll usually be moved to an intensive care unit (ICU) or a high dependency unit (HDU).

You'll be very closely looked after, and various tubes and machines that help monitor your health and support the functions of your body will be attached to you.

Recovery

You'll usually need to stay in hospital for 1 to 2 weeks after a pancreas transplant.

Recovering in hospital

When you wake up after having a pancreas transplant, you'll first be cared for in an intensive care unit (ICU) or a high dependency unit (HDU).

You'll usually be moved to a general transplant ward after 12 to 24 hours.

While in hospital, you'll be attached to various tubes, monitors and machines.

These may include:

• a machine that delivers painkillers through a tube into your body, controlled using a handheld device
• an oxygen mask
• tubes that provide nutrients and fluid into a vein, or a feeding tube that goes through your nose into your stomach
• tubes called drains that remove blood and other fluid from the operation site
• a tube in your bladder that allows you to urinate without going to the toilet (urinary catheter)

If you have also had a kidney transplant, you may need temporary dialysis, a treatment that replicates some of the kidney's functions.

Follow-up appointments

You'll have regular follow-up appointments to monitor your progress after a pancreas transplant.

These will be quite frequent at first, but may eventually only be necessary once every few months.

During these appointments, you'll have tests to check how well your pancreas and medicines are working, and also check for any complications of a pancreas transplant.

Immunosuppressants

You'll need to take several medicines called immunosuppressants for the rest of your life after having a pancreas transplant.

Without these medicines, your body may recognise your new pancreas as foreign and attack it. This is known as rejection.

Immunosuppressants are powerful mediciness that can have a range of significant side effects, such as an increased chance of getting certain infections.

While the side effects may be troublesome, you should never stop taking your immunosuppressants without medical advice. If you do, it could lead to your pancreas being rejected.

Getting back to normal

You should be able to return to most of your normal activities after a pancreas transplant, although this can take a while.

• You may need a few months off work.
• Your stitches will need to be taken out at around 3 weeks.
• You will not usually need to take insulin, restrict your diet and measure your blood sugar regularly any more.
• You can normally start driving after 6 to 8 weeks
• You can normally start gentle excercise from 6 weeks, as long as you feel fit enough. Avoid vigorous activities, such as contact sports, al least in the short term, as they could damage your new pancreas
• Light lifting is often possible after 6 weeks, but you should not lift anything heavy, such as a shopping bag, for a few months.
• You should wait 3 to 4 weeks before having sex. Pregnancy is not recommended while you are recovering

Your healthcare team will tell you about any activities you should avoid during your recovery, and can advise you about when it's safe to start them again.

Risks

A pancreas transplant is a major operation. As with all types of surgery, there's a risk of complications.

Some complications can happen soon after the operation, while others may develop months, or even years, later.

Some of the main risks associated with a pancreas transplant are described below.

Rejection

One of the most common complications of a pancreas transplant is rejection of the donor pancreas.

This happens in between 10 to 15 out of 100 people who have a pancreas transplant

Rejection is where the immune system recognises the transplanted pancreas as foreign and attacks it.

Immunosuppressant medication can reduce the risk of this happening.

Symptoms of rejection include:

• pain and swelling in your tummy
• a high temperature
• being sick
• chills and aches
• extreme tiredness
• puffy, swollen ankles
• shortness of breath

Contact a GP or your transplant team as soon as possible if you have these symptoms.

Rejection can usually be treated by increasing your dose of immunosuppressant medicine.

Immunosuppressant side effects

The immunosuppressant medicines you need to take to prevent rejection can have a number of significant side effects.

These can include:

• an increased risk of getting infections
• shaky hands
• difficulty sleeping
• high blood pressure
• hair loss or thinning
• mood swings
• weight gain
• an upset stomach
• a rash
• weakened bones (osteoporosis)
• an increased risk of certain types of cancer, particularly skin cancer

Speak to your transplant team if you have any troublesome side effects.

Do not stop taking your medicine without getting medical advice first.

Infections

Immunosuppressant medicine will weaken your immune system and make you more likely to get an infection.

While taking the medicine, it's a good idea to:

• report any possible symptoms of an infection to a GP or your transplant team immediately – things to look out for include a high temperature, aching muscles, diarrhoea or headaches
• ensure your vaccinations are up to date – speak to a GP or your transplant team for advice about any additional vaccines you might need as some are not safe if you're taking immunosuppressant medicines
• avoid close contact with anyone who has an infection – even if it's an infection to which you were previously immune, such as chickenpox

To help prevent infection, you may be given antibiotics, antifungal medicine or antiviral medicine to take for the first few weeks or months after your transplant.

Blood clots

Blood clots can sometimes form in the blood vessels that supply the new pancreas, which can stop it working properly.

The risk of this happening is highest in the days after the operation, so you'll be closely monitored in hospital to check for any signs of a blood clot.

You'll also be given blood-thinning medicine to reduce the chances of a clot forming.

If a blood clot does develop in the new pancreas, you'll usually need another operation to remove it.

Blood clots can also form in other blood vessels after surgery, such as those in your legs (deep vein thrombosis) or supplying your lungs (pulmonary embolism), but taking blood-thinning medicine should help prevent this.

Pancreatitis

Pancreatitis is swelling of the pancreas, and is common in the first few days after surgery.

It can happen as a result of storing the donor pancreas on ice in preparation for the transplant.

Symptoms of pancreatitis include:

• a dull pain in your tummy
• feeling sick
• vomiting

Pancreatitis should pass within a few days. But sometimes tubes may need to be placed in your tummy to drain any excess fluid off the donor pancreas, and in a few cases it may be necessary to remove it.