Help and support Helpline Information and leaflets Your Child & Transplantation Download the PDF leaflet TRANSPLANTATION Even if dialysis works well it is only regarded as a short term treatment until a kidney transplant becomes available for your child. Growth and development are usually better after a transplant. Life is more normal and over time children will need to visit the hospital less often. Occasionally children avoid dialysis altogether and go from conservative treatment to transplantation (pre-emptive transplantation). A kidney may be donated by a family member (living related donor). This means a close relative such as mother, father, sister or brother. If you wish to be considered as a possible donor, make your views known to the kidney specialist or team member. Most kidneys used for transplantation come from accident victims who have died in hospital (deceased donor). Details of each patient waiting for a transplant are held on a national computer in Bristol. The time that your child will have to wait will depend upon his/her tissue type and how closely he/she matches the donated kidney. PREPARATION FOR THE RENAL TRANSPLANT You and your child will be given information and preparation before he/she is put on the transplant list. This will be undertaken by the named nurse, play specialist or psychologist. Do feel free to ask questions as it is appreciated that it is a time of anxiety for all concerned. Special blood tests will be required before the transplant. These will include ‘tissue typing’ and testing for antibodies to viruses such as the hepatitis and AIDS virus. Your child may also require additional immunisations. Special bladder X-rays may also be required THE RENAL TRANSPLANT OPERATION The transplant kidney is placed in the abdominal cavity in the groin area. All that you will see is the scar and maybe a slight bulge. In younger children the kidney may be placed deep inside the abdomen. Following the operation your child may need to spend the first few days in the intensive care or high dependency unit as the kidney function needs to be monitored closely and many tubes may be in place. Frequent blood tests will be necessary following the transplant. Your child may also require a scan to check how the new kidney is working. If the kidney is not working well then a biopsy may be needed. At all times the staff will try to keep your child free of pain and discomfort. Before your child goes home after a successful transplant the nurse will discuss with you the importance of the drug treatment, signs of rejection and the arrangements for clinic visits. The kidney team will work with local medical teams and families to provide supportive medical care in an appropriate environment. TREATMENT WITHOUT DIALYSIS OR TRANSPLANT In exceptional circumstancesand when the child has other significant problems, parents/carers and renal team members come to a decision that it would be better not to treat with dialysis or a transplant. The children anf their families will still receive supportive treatment from the kidney team. In this situation the child will not live for long as they might if they were on dialysis or a successful kidney transplant. The kidney team will work with local medical teams and families to provide supportive medical care in an appropriate environment. IMPACT ON FAMILY LIFE The impact on the family of the diagnosis of chronic kidney disease can have far reaching effects. Parents often describe the time following their child’s diagnosis as the most difficult time, often with feelings of guilt, anger and sadness. Some parents say that they have benefited from being able to talk to someone at this time. This may be a professional within the renal team, for instance the social worker or clinical psychologist or another parent of a child with renal failure. Parents are asked to understand complex medical information alongside providing special care at home and to be part of major decision making for their child. This can be a stressful time and partnerships/relationships can be put under strain. Again it can help to talk this over with the social worker and look at different ways of supporting the family through this phase. Brothers and sisters may feel neglected and confused. They too need time with their parents to talk over their worries and to feel part of the overall plan. Extended family members can be a good source of support but need time to understand and accept the illness. The social worker is an important member of the team who will help to prepare and support the child and family throughout all the stages of chronic renal failure treatment. Regular contact either at the clinic or at home will enable families to have their questions answered and worries discussed. There are many adjustments to be made and individuals react differently. Members of the team can be called on to help with these adjustments and individual solutions to problems may be offered. FINANCIAL HELP The social worker can also advise about state benefits that are available because of your child’s illness. They may also be able to advise and help with travel costs to hospital and arrange applications to other special funds such as the Family Fund RESOURCES The social worker may want to involve social services or the voluntary sector in the area where you live to look to them to provide the necessary practical support for your family. The hospital may provide additional help in terms of arranging babysitting, special nurses to provide home care and arranging Parent Groups. EDUCATION Units may have an Education Department which provides a school room in the hospital for children of school age to keep up with their work. The hospital school teacher will contact the child’s own school if the child is going to spend a lot of time in hospital. Home tutoring may be arranged if your child has to be at home for a prolonged time. Many units now provide a special area on the ward for teenagers where they can enjoy their own activities with stereo, video, etc. HOME AND SCHOOL VISITS We like to maintain close contact with both the family and school. It helps if teachers have some understanding of your child’s care. Visits are organised whenever there are changes in treatment or if problems should arise. We keep in touch by telephone and there is always someone from the unit for you to contact. In some units the community paediatric sister may also visit to help with home nursing problems. SPECIAL OCCASIONS Many units organise get-togethers during the year where you can meet other families. These include parties, picnics, holidays and very special events such as the Transplant Olympics. FAMILY ACCOMODATION Facilities are provided for family members to stay overnight when your child is in hospital. GLOSSARY We never stop learning! We welcome your questions at any time and we are always willing to listen to suggestions. Albumin – The main protein within the blood stream. Alphacalcidol – Drug (active vitamin D) used to increase calcium absorption. Ametop – used to numb the skin before taking blood Anaemia – A condition in which there is a reduction in the haemoglobin concentration – the blood. This can cause paleness, weakness and fatigue. Antibiotic – A drug used to combat infection. Antihypertensives – Drugs used to control high blood pressure (eg. Nifedipine,Atenolol, Propranolol, Enalapril). APD – Automatic Peritoneal Dialysis. Artery – Vessel carrying blood away from the heart. Part of the circulatory system. Artificial kidney – used in haemodialysis to filter waste products and excess fluid from the blood stream. Artificial kidney machine – (haemodialysis machine). A machine which supports and monitors the function of the artificial kidney. Aseptic technique – The use of sterile procedures to prevent bacteria from entering the body, thus limiting the risk of infection. Azathioprine (Imuran) – drug used to prevent rejection of the kidney transplant. Lowers white blood cell levels in the blood stream. Biopsy – Removal of a tiny piece of kidney tissue for special examination under the microscope. Bladder – The sac in which urine produced by the kidneys is collected and stored until it is released from the body. Blood Pressure – The pulsating pressure of blood flow through an artery. Calcium – A mineral that is important for bone growth and body functioning. Calcium Carbonate – Drug to reduce the uptake of phosphate from the gut. CAPD – Continuous Ambulatory Peritoneal Dialysis. CCPD – Continuous Cycling Peritoneal Dialysis. Chronic kidney disease (CKD) – A gradual reduction in kidney function that occurs over months or years, and results in the build up of waste products. Stages 1-5 with 1 mild and 5 severe. Contaminate – to make an accidental failure in aseptic technique. Creatinine – A waste product in the blood produced by the breakdown of normal body tissues. It is removed from the blood stream by the kidneys. Cyclosporin – Drug used to prevent rejection of transplants. Dialysis – Process of removing waste products and excess waste from the blood stream. Diastolic – The lower number in a blood pressure measurement. Diffusion – Passage of particles from a solution of high concentration to a solution of low concentration. Dry (or ideal) weight – The weight at which blood pressure is normal and no swelling (oedema) is present. Electrolytes – include sodium, potassium, chloride and bicarbonate and usually measured together in the blood. EMLA cream – Used to numb the skin before taking blood or giving an injection End stage renal disease (ESRD) – The stage of poor kidney function that requires dialysis or transplantation to maintain life and health. Erythropoietin (EPO) – A hormone that increases the number of red blood cells and which is normally produced by the kidney. Artificial hormone may now be given by injection to correct anaemia. Fibrin – Strands of protein sometimes found in peritoneal dialysis fluid. Fistula – Created surgically by joining an artery and a vein. The vein then ‘matures’ or dilates and provides a route to supply and return blood during dialysis. Gastrostomy – Feeding tube or button inserted directly into the stomach. Haemodialysis – The process by which excess body wastes and fluid are removed from the blood when passing through an artificial kidney. Haemoglobin – The pigment in red blood cells that carries oxygen from the lungs to the tissue. Heparin – A ‘blood thinner’ or anticoagulant used during dialysis to slow blood clotting or prevent fibrin problems. Hypertension – High blood pressure. Hypotension – Low blood pressure. Immunosuppression – Use of drugs such as tacrolimus, MMF, azathioprine and prednisolone to damp down the body’s response to the transplant kidney. Isotope scan – requires a special injection into a vein and will show how the kidney(s) is functioning. IPD – Intermittent Peritoneal Dialysis. Jugular catheter – plastic tube placed into a large vein in the neck and used for haemodialysis. Also used for taking blood samples and giving fluids. Kidney – One of the two organs which produce urine. Located at the back of the abdominal cavity on each side of the spinal column. Lignocaine – Local anaesthetic. MMF – Mycophenolate Moletil – drug used to prevent rejects of transplants. Metabolism – Process by which foods are broken down and used for body energy and function. Monitor – An electronic device used to check, remind, or warn. Nasogastric – Tube passed through the nose into the stomach Nephrectomy – Surgical removal of a kidney Nephron – The functional unit of the kidney which acts to maintain the body’s chemical balance. There are approximately one million nephrons in each kidney. Oedema (Swelling) – An abnormal accumulation of fluid in the tissues, specially noticeable around the ankles, face (particularly the eyelids), and sometimes the abdomen. Paediatric Dialyist – Vital mineral supplement Peritoneal cavity – Space where peritoneal dialysis occurs. Peritoneum – A porous lining surrounding the peritoneal cavity, through which water and waste products pass during peritoneal dialysis. Peritonitis – Infection in the peritoneal cavity. Phosphate – A mineral important for bone growth and body functioning. In chronic kidney disease there is a build up of phosphate in the body. Phosphate binders – tablets used to reduce the level of phosphate in the blood. Taken with meals. Plasma – The fluid portion of the blood. Potassium – An electrolyte necessary to the body, but harmful when found in excess. Prednisolone (Steroid) – drug used to reduce inflammation in the kidneys and to prevent and treat rejection. Also used to treat some causes of renal failure. PTH – Parathyroid hormone which regulates bone health Rejection – A vigorous response of the body’s own cells to the renal transplant. Renal – Referring to the kidney. Saline – A salt water solution. Sodium (Salt) – A mineral which helps regulate the fluid content in the body. Systolic – The top number in a blood pressure measurement. Sytron – oral iron solution. Tacrolimus – drug used to prevent rejection Tenckhoff catheter – silicon rubber tube placed in the peritoneal cavity for peritoneal dialysis. Thrill – vibration or buzzing sensation felt over the vein of a cannula or fistula. Ultrafiltration – The process of removing water from the blood during dialysis. Ultrasound scan – A painless procedure which tells us the size and structure of the kidneys. Often done at the time of kidney biopsy. Ureter – A tube which carries urine from each kidney to the bladder. Urethra – The canal for the discharge of urine from the bladder. Urea – The waste product in blood which is produced from protein breakdown. Vein – A blood vessel which carries blood back to the heart from other parts of the body. Venous – Referring to veins and the flow of blood to the heart. Vitamins – Essential substances needed for proper body functioning. Content compiled by members of the Children’s Renal & Urology Unit, QMC Campus, Nottingham University Hospitals. The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.