This leaflet gives you important information on things to look out for and advice on how to care for yourself once you are home following pancreas transplant surgery. If you have had a kidney transplant at the same time you should read this along side the Kidney Transplant Guide booklet.
You have been discharged from hospital because we no longer need to keep a daily check on you. However, we still need to monitor your blood tests closely. You will need to come to the Transplant Clinic at Addenbrooke’s Hospital (held in clinic 12) every Monday and Thursday morning for a few weeks. At the clinic you will be seen by a doctor. There will also be a transplant nurse and dietitian in the clinic available to see you if required. You will have blood tests to check the function of your transplant. You can also order more medication with the doctor and collect from the hospital pharmacy before you leave.
As your condition stabilises, your clinic visits will be reduced to one a week. In time, they will reduce further. When you are very stable, those patients who originally came from other hospitals can return for follow up there.
Your wound care
We will monitor your wound at your clinic visits. If you have staples in these can be removed on day 21 post transplant. If you need more frequent dressing changes then these can be done via your GP surgery.
Most patients have a small feeding tube inserted into the abdomen during the transplant operation to allow us to feed you during the early part of your recovery. Even though the tube is not being used to feed you anymore it needs to stay in for 12 weeks, after which it can be removed in the clinic. In the meantime it can be covered with a waterproof dressing so that you can shower.
Taking medications to suppress your immune system is essential after a pancreas and kidney transplant. Your body recognises the transplanted kidney and pancreas as foreign objects and tries to reject them. To prevent rejection, you must take your anti-rejection (immunosuppressant) medications each day as prescribed. You will probably go home with two anti-rejection drugs called Adoport (tacrolimus) and Mycophenolate Mofetil.
We have to monitor the level of Adoport in your blood every time you come to transplant clinic, so it is important you do not take this drug on the morning of your clinic until after your blood tests have been taken.
The pharmacist on the ward will have given you a list of all your medications. It is useful if you bring this list with you to clinic as we often make changes in the first weeks after surgery. In time, some of the drugs will also be stopped but it is important to wait for your doctor to tell you when to stop a drug. If you think a drug does not agree with you keep taking it until you get to the clinic and explain your problem to the doctor. Do not stop a drug without first talking to the transplant doctor.
Please refer to the Kidney Transplant Guide booklet where more detailed information can be found on your medications.
Now you have had a kidney and pancreas transplant you will not need to stick so rigidly to the renal or diabetic diets and you will not have to take insulin. It is likely that you will have lost some weight whilst being in hospital. Whilst it is good that you put some of the weight you lost back on, it is still important to follow a healthy diet and guard against putting on a lot of weight.
We check your blood potassium levels every clinic visit. If the level of potassium in your blood is high we will advise you to cut down on some foods that contain a lot of potassium.
Blood sugar monitoring
Your transplanted pancreas usually starts producing insulin straight away and you should have normal blood sugar levels soon after surgery. When you first go home we would advise you to check your blood sugar level twice a day and at different times each day. Wait for 2 hours if checking it after eating. Sometimes the sugars can be a little high. If you do get a reading around 10 then recheck your blood sugar level after about an hour. If your blood sugar level continues to rise, you should phone ward G5 on 01223 217711 for advice.
Your transplanted pancreas is in your lower abdomen and it therefore releases insulin into a different part of your blood circulation than your own pancreas did before you got diabetes. Because of this some people occasionally experience low blood sugar levels (around 3) and you can feel as if you are having a hypo. Do not worry if this happens, but have something sweet to drink such as orange juice, or have a biscuit and recheck your sugar. Having small frequent meals rather than one big meal can also help stop low sugar levels.
When you have had your transplant for a few months, you can reduce your blood sugar checks to a couple of times a week. Aim to check it a couple of hours after the biggest meal of the day.
As well as making insulin, the pancreas also secretes enzymes into your intestine that help digest the food you eat. Two of these enzymes are called amylase and lipase and we will check these levels in your blood at every clinic visit. If there is a rise in the level of amylase or lipase it can indicate that there is a problem with the pancreas and you may have to be admitted back into hospital for some further tests and extra treatment.
Rejection happens when your body recognises the transplanted pancreas as “foreign” and therefore attacks it, a process we call rejection. It is a common complication and usually can be treated successfully.
Symptoms of pancreas rejection include:
- pain in the lower abdomen or back
- increased levels of amylase and lipase in the blood
- increased blood glucose (a late sign of rejection)
If you do have raised amylase and lipase in the blood you may not have any pain and may not feel unwell. Your blood sugar levels may well be normal, but we would still need to investigate you for rejection. This will probably mean you will need a biopsy of the kidney as this is easier to biopsy than the pancreas. A biopsy involves taking a very small sample of the transplanted kidney. You will be given local anaesthetic to numb the skin and a special needle will be inserted into the kidney to take some kidney tissue.
The sample is then sent to the laboratory where they look for signs of rejection through a microscope. Sometimes you may need to have a pancreas biopsy, which will be performed in the CT scanning department, or may require a short operation. If there are signs of rejection you would be given additional immunosuppression, as an inpatient. Treatment is usually successful, especially if the rejection episode is diagnosed quickly.
Infection is always a risk when you are taking anti-rejection tablets. Please refer to the Kidney Transplant Guide.
It is very important to continue to keep a close check on the health of your feet. The years of diabetes leaves many people with less sensation and poor circulation to the feet meaning that pancreas transplant recipients are still at risk of foot problems including ulcers and infection.
A successful transplant will not make the sensation come back. Follow these guidelines to continue to take good care of your feet after your transplant.
- Wash your feet every day and dry them thoroughly, especially between the toes.
- Examine your feet carefully every day for cuts, scratches, blisters, ingrown toenails, puncture wounds or warts. Inform your doctor in clinic if you have any problems.
- Inform your clinic or doctor if you notice any signs of infection, burning, tingling, or numbness in your feet.
- Do not try to remove or treat corns or calluses by yourself. Make an appointment with a chiropodist or see your doctor to have them removed.
- Wear comfortable, well-cushioned shoes. Do not wear high heels and do not walk barefoot.
- Wear clean cotton socks to absorb moisture. Be sure to change your socks every day.
Now you have been transplanted with a pancreas and have normal blood sugar control you should not need to attend a diabetic clinic as often as you have been. However, we strongly advise that you arrange to have an annual review in your diabetic clinic so that they can keep a check on you, and particularly on your eyes and feet. Even though you no longer have to inject insulin it is possible that you could encounter complications due to diabetes and the clinic can monitor you.
How will I feel when I go home?
Having a pancreas transplant can be a difficult time and when you go home you are very likely to need support with routine activities such as shopping, cooking and cleaning. It may well be a few weeks before you feel well enough to drive. It is also advisable to contact your insurers and explain you have had a transplant. They will advise on how long you need to wait before driving. We advise that you may need up to three months off work. Many people make rapid progress and begin to feel better quickly once they are back at home.
Planning for a baby
Following a successful transplant, fertility can return to normal very quickly in both men and women. It is very important that contraception is planned and that pregnancy is avoided for at least the first year following kidney and pancreas transplantation. When you want to start planning for a baby, it is very important that you discuss this in your transplant clinic for both men and women. Some of the transplant drugs you have been given would be very damaging to the unborn baby, so these drugs need to be swapped to different medications before trying for a baby.
Please consult your transplant doctor in clinic if considering taking the contraceptive pill as some of these medications can increase the chance of blood clots which could affect the transplanted organs. Avoid oestrogen containing contraceptive pills.
Useful phone numbers
Ward G5: 01223 217711
Clinic 12: 01223 586918
Pancreas Transplant Coordinator: 01223 216536
We are smoke-free
Smoking is not allowed anywhere on the hospital campus. For advice and support in quitting, contact your GP or the free NHS stop smoking helpline on 0800 169 0 169.
Help accessing this information in other formats is available. To find out more about the services we provide, please visit our patient information help page (see link below) or telephone 01223 256998. www.cuh.nhs.uk/contact-us/accessible-information/
Cambridge University Hospitals
NHS Foundation Trust
Hills Road, Cambridge
Telephone +44 (0)1223 245151