Advice for Going Home

Although its exciting to be going home with a kidney that works some patients and families can worry about causing harm to there new kidney. One of the Transplant Co-ordinators will visit you before discharge and give you all the information below. It is important to try and do everything that is asked of you, if you do not understand anything please ask NO QUESTION IS STUPID! Some of the areas below are expanded on in the "patient health education section" for long term guidance. We realise that this is the start of a new way of living but the important thing is to look after yourself and enjoy your new life and your new kidney.

Returning to work

Our aim is to allow each transplant patient to return to an independent lifestyle with a good quality of life. Most transplant recipients remain off work for 2-3 months, but this depends on the individual patient and their occupation. Please discuss when you can return to work with the transplant co-ordinator or physician caring for you.

Driving

Usually you are able to drive at about 6 weeks following your operation. You should also check with your individual insurance company. At that time inform your insurance company and the DVLA that you have had a transplant operation. Remember always to use your seat belt.

Transport

You may be able to get some financial help to cover your travel costs when using public transport, your own car (not taxi) – if you are on a means tested benefit, which include:

  • Income Support
  • (JSA) Job Seekers Allowance (income based)
  • Working Families Tax Credit
  • Disabled Persons Tax Credit
  • (ESA) Employment and Support Allowance (income based)
  • Pensions Credit
    Or you have the following certificates:
  • an HC2 (Help with health costs certificate)
  • an HC3 (Help with health costs certificate)

You can apply for an HC2 /HC3 (by completing an HC1 form) if you are on:

Incapacity Benefit
Contributory ESA
Contributory JSA
Working on a low income

If you qualify for help in any of the above ways, then you should take the following to the hospital’s cashier’s office, located near the main entrance.

Travel receipts / tickets for public transport. If you come by car you will be given a standard mileage rate for petrol (15p a mile) so no need to get petrol receipts.
Patient’s Travelling Expenses Certificate of Attendance. Nursing staff in OPD1/Ward 206 will give you this if you ask.
Written proof of benefit claim
HC2 /HC3 certificate

If you need further information or advice about travel costs and arrangements then please try the following

NHS forms order line on 08456 101 112
Health costs advice line 0845 610 1166
Disability benefits enquiry line 0800 882200

Hospital Admission/Benefits

Some benefits can be affected by your hospital admission. For more details on this and on a full range of benefits, please visit www.direct.gov.uk, which has an online Benefits Checker.

Disability Allowance/Attendance Allowance/Carer's Allowance will be suspended 4 weeks following admission.

Citizens Advice also provides telephone, online and face-to-face assistance, however, certain offices can be particularly busy.

Contact in local phonebook or www.cas.org.uk

Medication when leaving hospital

When you leave hospital you will be given a 7-day supply of your medicines together with a “green book” which details your current medications. Remember to bring your book with you every time you come to the hospital. (There is a section later in this booklet explaining each medicine.)

You will be able to get regular supplies of your medicines from your GP. If you have any problems getting medicines, let us know straight away. You will be able to get an emergency supply from the hospital pharmacy.

What should I do if I forget to take my medicines?

If you have forgotten to take a dose, continue to take your medicine as normal. Do not take twice the usual amount when it is time for your next dose.

Should I take my medicine before I have my blood checked?

Do not take Prograf, Advagraf, Neoral or Sirolimus until you have your bloods taken at clinic. Bring these medicines to clinic and take them when your blood has been taken. If you do take them don't worry just let the doctor know at clinic.

What if I cannot take my medicines because I am being sick?

Call the hospital at once. It is very important not to miss a dose for any reason.

How are my tablets going to change?

Some of the medications you are taking are needed because your kidney is not working properly. After a transplant, these medicines will be stopped. They include phosphate binders, anti-itch tablets and erythropoietin.

Some medications will be started. The most important new tablets you will be started on are called immunosuppressants. The immune system is the body’s natural defence mechanism. It is programmed to recognise and destroy anything unfamiliar. This includes a transplanted kidney as well as the organisms that cause infection. You must take them every day while your kidney transplant is functioning.

What immunosuppressant might I be taking?

Tacrolimus (Prograf/Advagraf)
Cyclosporin (Neoral)
Sirolimus (Rapamune)
Prednisolone
Mycophenolate Mofetil
Mycophenolic Acid (Myfortic)

If you do not take these medications as prescribed, it could result in rejection and the loss of your new kidney. These drugs need to be finely tuned as too little may lead to rejection and too much may lead to infection. Early after the transplant the need for immunosuppression is high but this need lessens with time, so these drugs will be slowly reduced by your doctors.

Possible side effects

Immunosuppressants, like most medicines, can have some unwanted side effects. However, just because a medicine has the potential to cause adverse effects, it does not necessarily mean you will get them. All anti- rejection drugs will increase your risk of infection. The risk lessens as they are cut down, but common sense precautions will be necessary. Any signs of serious infection will need to be brought to the attention of the transplant unit immediately.

The individual immunosuppressives may have their own side effects as follows:

Tacrolimus - shaking of the hands, headaches, impaired vision, ‘pins and needles’, raised blood sugar levels (diabetes), kidney damage at high blood levels.

Cyclosporin – high blood pressure, increased or unusual hair growth, tender or swollen gums, shaking of the hands, raised blood sugar levels (diabetes) and kidney damage at high blood levels.

Sirolimus – raised cholesterol, decreased white blood cells, increased liver function tests, anaemia, irritation of, or sores, in the mouth, skin rash, including acne, delayed wound healing

Prednisolone - irritation of the gut lining, changes in mood, indigestion, increase in appetite, weight gain, rounded face, thinning skin & bones and raised blood sugar levels (diabetes).

Mycophenolate Mofetil/Mycophenolic Acid – diarrhoea/upset stomach, slows down production of blood cells in boner marrow.

Inform the doctors if you experience side effects - they may want to cut down the dose or give you an alternative.

What other medications do I have to take?

You may be asked to take the following:

Co-trimoxazole - an antibiotic to reduce the risk of bacterial infection

Ranitidine - to protect the stomach against ulcers and heartburn

Antiviral medications such as valganciclovir. Valganciclovir is not suitable for use during pregnancy. Women of child-bearing age should use effective contraception during treatment. Men should use barrier contraception during treatment and for 90 days after treatment stops.

Can I take any other medicines?

Some of these medicines are affected by and do themselves affect other medicines. Please discuss your current medication with your renal doctor or transplant co-ordinator if you need to buy ‘over the counter’ medicines for minor ailments. This also applies to herbal medications, Chinese medicines and supplements.

Grapefruit juice can alter the levels of tacrolimus (prograf/advagraf), Neoral (cyclosporin) and Sirolimus (Rapamune). It should therefore be avoided.

Stent/PD catheter removal

At the time of your transplant operation you will have a plastic tube (stent) placed inside your urine tube (ureter) this connects the kidney to your bladder. This prevents any kinking of the ureter after the operation. The stent requires to be removed about six weeks after the transplant operation. This is done by inserting a tube into your bladder to remove the tube. This means that you have to come back for a day stay in hospital and a trip to the operating theatre. Your peritoneal catheter will also be removed at the same time.

Healthy eating

Many people gain weight following a transplant, especially in the first year. This can be due to freedom from dietary restrictions, feeling well, increased appetite and lack of exercise. This is not helped by steroids, which are necessary after a transplant.

Many common health problems such as heart disease can be linked to a poor diet and lifestyle - healthy eating is an important part of keeping fit and is one of the positive things you can do to improve your health. Healthy eating is not a ‘diet’- it requires a gradual change in your eating behaviour and should become a regular part of your lifestyle. Healthy eating involves: enjoying what you eat and having a varied diet, eating more fruit and vegetables, cutting down on fat, sugar and salt and being a healthy weight.

Your transplant co-ordinator will give you more information about healthy eating and food safety before you are discharged home.

Your fitness

When you feel well enough you can start to take gentle exercise. It is important to stay fit and healthy. There is no reason why you cannot have an active life, however you should avoid contact sports like rugby.

Alcohol

Limit alcohol to below recommended weekly limits (21 units for men, 14 for women)

Your skin

Due to your medication you are more at risk of skin cancer. Make sure you cover up, wear a hat and use sunscreen. You should wear sunscreen in the UK between the months of April to October as well as when abroad. Sunsense spf 50+ is available on prescription from your GP. Avoid sunbeds and sunbathing.

You should examine your skin regularly looking for any changes to existing moles and freckles. If you are concerned that your skin has changed please speak to your GP, transplant nurse or doctor. Please see the section on dermatology in the patient health information section.

Travel

There is no reason to prevent you from travelling within the UK when you feel well enough but you should contact one of the medical staff you see regularly in the transplant follow-up clinic for advice. Before booking any overseas holidays always check that you are fit for travel by asking one of the medical staff in the outpatient clinic. If you are going away you should take sufficient medication with you for your holiday. It is usually a good idea to obtain prescription supplies well in advance so as never to be short of medication.

Vaccinations

You can get advice from the travel clinic at the Western General Hospital regarding vaccinations that may be required. Call 0131 537 2822 to make an appointment.

As you are taking immunosuppressants it is important that you do not have certain vaccines, called live vaccines. Live vaccines are likely to give you the disease the vaccine is designed to protect you against.  Other vaccines, called inactivated vaccines are not dangerous to receive, but might not give you full protection.

It is recommended that you have the seasonal flu vaccination on a yearly basis.

Pregnancy

Many women who have had a successful transplant operation enjoy a normal pregnancy. However, we advise against pregnancy during the 1st year after your transplant. Having a baby may put a strain on your kidney and you may be taking medicines that could affect the baby. It is therefore essential that you use some form of contraception. You should discuss family planning with your renal doctor or transplant nurse. Men also need to take “pregnancy advice” as it is important that they do not father children whilst on certain medications.

Sex

You can resume sexual activity once you feel well enough. However you may find that your sex drive is reduced during the early convalescence period, although this will gradually return to normal.

Writing to your donor family

Following your transplant you may have lots of thoughts about the person who donated your kidney especially if the donor has died. You may feel quite emotional during the first few weeks following you operation as you start adjusting to life with a new kidney and new medication. However, you will know if and when the time is right for you to receive details about your donor. It is a very individual process and the transplant co-ordinators will help you with any queries or concerns. They can provide you with some anonymous details about your donor. The details that they are able to give you about your donor are: age, sex and how the donor died. They will only give you the information that you ask for. Some kidney recipients decide that they want to write a few words to the donor’s family. If writing to the donor’s family is something that you feel you want to do, speak to your transplant co-ordinator. Click on the link below to look at a leaflet designed to help you write to the donor family. There is no time limit you should write if and when it suits you.

Writing to your donor family

(This information has been developed with the help of Renal Pharmacist, Renal Social Worker, Transplant Dermatologist, Transplant Dietician and Renal transplant co-ordinators). 2012

Last Reviewed: 25/10/2013