General Advice After Transplantation

Infection

Transplant patients are at a greater risk of infection because of the need for immunosuppression, which weakens their immune system and ability to fight infection. While it is important for you to limit contact, with potentially infectious situations, it is not necessary to become a recluse. There are some simple measures which you can take to reduce the risk of infection, without unduly limiting your lifestyle.

Most bacterial infections can be avoided by following good common sense and good personal hygiene. Wash your hands frequently throughout the day using warm water and soap. If you get a cut, wash and treat it immediately. If it gets red or sore contact your GP.

The common fungal infection seen in kidney transplant recipients is candida. Thrush is a common candida infection, which occurs in the mouth. Thrush creates creamy or grey patches on the inside of the tongue or cheeks. If this develops you can get mouthwashes from your doctor that will help, but please also tell your doctor in the transplant clinic when you next attend. The dose on your anti-rejetion drugs may be able to be reduced.

Although there are many viruses that can cause infection in transplanted patients, the ones that most often cause problems belong to the herpes group. CMV (Cytomegalovirus) is a member of the herpes family and is present in more than half of all adults, before they reach middle age. For most people CMV causes only mild symptoms including a low temperature and tiredness. Although these symptoms disappear, the virus remains in the body forever. When the immune system is suppressed, following a kidney transplant, the CMV could be reactivated and can cause a range of serious infections such diarrhoea, pneumonia and hepatitis.

If you develop a high temperature and fever it is important to seek medical attention sooner rather than later. People taking anti-rejection drugs can become ill very quickly from infection, particularly when on higher doses early after transplantation. If this happens it is useful to contact the renal recipient coordinators within normal working hours (Tel: 028 9063 8248) or the transplant ward outside of normal working hours (Tel: 028 9504 0719) for advice especially in the first few weeks and months after transplantation.

Going Home

The majority of people go home from hospital about a week after they have received their transplant. The amount of new information given may seem overwhelming, as may all the new tablets, but over time everything settles into place and having a transplant becomes ‘normal’.

We keep in close contact in the first few days and weeks, and routinely will see you every Tuesday and Friday for the first six weeks – typically one of the nephrologists (kidney physicians) will see you on a Tuesday and one of the transplant surgeons on Friday. If there are any concerns about you or your results then we will ask you to call up to the ward in between, or if you have any concerns you should phone the ward. It is much better for us to know what is happening so we can either reassure you (“this is normal after a transplant”) or arrange to see you if there may be a problem. It is particularly important if you have a fever or infection, or vomiting and diarrhoea.

It may be that there will be a lot of ‘well-wishers’ who want to visit and share in your good news! Please ask for any that have coughs/colds etc. to stay away until they are better. This will reduce your chances of getting an infection when your immune defences are lowered particularly in the early period.

Getting back to normal activities

The beauty of a working transplant is that you should be able to return to normal physical activities. We encourage you to push yourself a little more each day (within sensible reason!) to build up your stamina and fitness again. After the first few weeks you should begin to feel that you have more energy. Some discomfort over where the muscle has been cut at the operation is a normal part of the healing process, but tell the doctor at your clinic appointment if you are experiencing a lot of pain over your wound.

Expectations

Even if a kidney transplant goes very well and there are no complications, it generally takes three months for someone to really feel the benefit. This is because it takes time to:

  • recover from the operation and anaesthetic – e.g. many people go home with have a lower blood count than what they have been used too, and this slowly improves
  • adjust to new medications – there a quite a number of tablets to get used to. Thankfully the doses of the medications does decrease after the first couple of weeks
  • adapt to having good kidney function – a transplant results in a sudden change (almost overnight) to good kidney function after having very poor function or being on dialysis for years, and this is a big biochemical and physiological change. It takes the rest of your body and systems a bit of time to adapt and ‘catch-up’!

People who have been in dialysis for many years or who have had a complex time after the transplant should expect it to take several months before they really feel strong and well.

Work

Typically we recommend that people take three months before returning to work, but this obviously will vary depending on the individual recovery rate, the type of work involved etc. It is ideal if there can be a phased or staggered return e.g. mornings only, or three days instead of five, rather than returning directly to full-time activities. You should discuss your plans with your doctor at the transplant clinic.

Diet

The renal diet sheets can be torn up or ceremonially burned! And while we want you to enjoy all the foods that you have denied yourself previously, please be mindful that while a little weight gain is normal and often healthy, it can be easy to continue to eat to excess and gain too much weight (particularly as the prednisolone / steroid tablets will give you a bigger appetite). It is very important, to keep both you and your kidney well for a long time, to have a healthy weight.

Sexuality & pregnancy

Resuming sexual intercourse is entirely up to the individual. This will be whenever you feel ready and pain free.

Fertility, for both men and women with advanced kidney failure, is reduced. This can return to normal in the first few weeks after a successful transplant (women who have been on dialysis may not have had a period for a long time and will notice that these can start again after a few weeks or months).

Contraception may therefore become relevant after transplantation. Barrier methods of contraception are recommended for transplant recipients, particularly in the early period after transplantation when there is potentially a higher chance of infection (relevant to intra-uterine coil device), venous thrombosis, and blood pressure may be more labile (relevant to oral contraceptive pill). Other methods of contraception can be considered in due course with the usual precautions but please talk to your doctor about this at the transplant clinic. Men who have been prescribed valganciclovir (an anti-virus tablet required for three months after transplant in some people) should avoid fathering a child while they are taking this tablet and for a further three months once it is finished.

We recommend that a transplant patient should not become pregnant at least in the first year, and that this should be discussed with your consultant at the transplant clinic if you are planning a family. Some of the anti-rejection medication is associated with problems with a baby’s development and it may be necessary to adjust your medications before conception. Since most complications with a transplant are in the first few months it is sensible to wait for a year before trying for a family.

Travel & vaccinations

It is sensible not to travel too far away in the first few weeks or months after transplantation. Aeroplanes, with their risk of infections, are not ideal when you are taking high doses of drugs that suppress your immune system! However, you should certainly take advantage of not being on dialysis and short-distance flights within the UK and Europe (where there is a decent health system you can avail of or from where you can return home easily) are reasonable after the first few months. Chat to your doctor at the clinic about your plans.

The advice in regard to vaccination when you are going further afield perhaps in the years ahead, is that you should receive any vaccines that are normally recommended unless they are ‘live’ vaccines. Always check this with your GP / practice nurse before administration.

Lastly, remember your sun hat, shirt, and sun cream.

Sun protection

Skin cancer is the commonest type of cancer to develop in transplant patients, and it can be much more serious than in people who are not on anti-rejection drugs. The good news is that you can really reduce your risk of skin cancer by sitting in the shade between 11am and 3pm, and taking the following advice (for all year around, not just holidays):

SLOP

  • Use daily sun-cream: at least UVB SPF >30, UVA ****
  • Use a teaspoon for each arm, just under for face, neck, ears, scalp, 20 mins before exposure
  • Reapply after sweating, swimming, or every 2-4 hours, no matter what the bottle says

SLIP

  • Wear long sleeved clothing

SLAP AND WRAP

  • Wear a hat and glasses

Take very good care of your skin please. Please click here for further information.

Longer-term

Healthy lifestyle

A healthy lifestyle is important for many reasons, and there is no doubt that a transplant kidney will work better and last longer if you look after your general health as much as possible. Your blood pressure, cholesterol, and risk of diabetes can all be improved through living a healthy lifestyle.

Your transplant team will help you make choices to develop and live a healthy lifestyle. You should:

  • return to your normal routine such as work, school or housework
  • increase physical activity with regular exercise
  • eat a proper diet; a dietician can help you make the right healthy food choices
  • lose weight if needed, to reach and maintain a healthy weight

Exercise

As you recover from surgery and start to feel a little better, you can slowly begin an exercise programme. Starting with a short period of walking – perhaps 5 minutes – and gradually increase the time and distance over the next days and weeks. A return to full physical exercise is encouraged, but for contact sports please discusses possible protective measures with your doctor in the Transplant clinic. Alongside taking your medications and eating healthily, regular exercise can go a long way towards keeping you and your organ healthy.

Staying active and enjoying your favourite activities can:

  • Help lower cholesterol and blood pressure
  • Make it possible to reach or maintain a healthy weight
  • Maintain muscle tone and help protect bone strength
  • Reduce stress

Taking your anti-rejection medications

Anti-rejection medication is vital in keeping your transplanted organ healthy. Despite the important role anti-rejection medications play in keeping transplanted organs healthy, transplant recipients do not always take their medications as prescribed. In fact as time goes on after a transplant and people’s lives return to normal, an increasing number become non-adherent to their anti-rejection medicines.

Many factors can lead to non-adherence. These can include:

  • Complacency
  • Busy lifestyle
  • Forgetfulness
  • Changes in medication
  • Lots of medication
  • Not realising the importance of adherence
  • Side-effects

Both the taking and timing of your medications are extremely important. Making changes to your medication regimen, even skipping occasional doses, without guidance from your doctor, can be dangerous. It has been shown that a significant percentage of rejection and organ loss is due to transplant recipients not taking their medications as recommended.

The single most important thing you can do to protect your long-term health is to follow your transplant team’s instruction, including taking your medications as recommended each day at the same time.