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Your Child

& Chronic

KidneyDisease

An

introductory

guide

forfamilies

Your Child

& Chronic

KidneyDisease


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Acknowledgments

This booklet has been adapted

from material provided by

the Children & Young Peoples

Kidney Unit at the City Hospital,

Nottingham, England. The KidneyFoundation of Canada

wishes to thank

Dr. Alan Watson

and other

members of this

Unit for their

permission to adapt

this material, as well as Jan Smith,

who created the illustrations.

Thanks are also extended to

Dr. Julian Midgley, BM, BCh,

FRCPCH at Alberta Childrens

Hospital, Calgary, Alberta for

his assistance in reviewing the

information in this edition.

This booklet was made possible

by an educational grant from

Ortho Biotech.


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Introduction 2

What do the kidneys do? 3

What is chronic kidney disease? 4

What causes chronic kidney disease? 5

What is the treatment? 6An overview... 6What check-ups and tests will be needed? 6Diet and dietary supplements 8Medications 13

Dialysis 15Transplantation 19

Emotional health and well-being 22How your healthcare team can help 22Play and learning 23Your childs schooling 24Special events 25Financial help 25

Are there any support groups? 26

Where can I obtain more information? 26

Useful telephone numbers 27

Glossary 28

Con ten t s

YOUR CHILD & CHRONIC KIDNEY DISEASE THE KIDNEY FOUNDATION OF CANADA


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You have recently learnedthat your child has chronickidney disease. This

condition used to be calledchronic renal failure (these

two terms mean the same thing). Youprobably have many questions aboutthis condition and how it is treated.This booklet has been prepared to helpanswer some of those questions.

After you have read this booklet,you will know what the kidneys doand what chronic kidney diseasemeans. You will learn about the manysuccessful treatments that are usedto manage this condition, especiallydialysis and transplantation.

You will also learn how medicationscan help your child and why a properdiet is an important part of the

treatment. You will discover waysyou can help your childs emotionalhealth and well-being, and about theservices that are available to help youand your family. Finally, this bookletwill tell you where you can obtainmore information about chronickidney disease.

Some words used in the text appear inbold letteringand these are explainedin the glossary at the back. Keep thisbooklet in a handy place so you canrefer to it when you need to.

I n t r oduc t i o n

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3

The kidneys are reddish brown organsabout the size of their owners fists.They lie on either side of the back bone

just behind the lower most ribs.Although most people are born withtwo kidneys, one normal kidney is morethan enough to meet the bodys needs.

Kidneys are important because they dothree essential things.

1. Kidneys regulate the amount

of water in the body.

For the body to work properly, itmust contain just the right amountof water. The kidneys remove excesswater (water which is not needed)from the body, or hold on to waterwhen the body needs more.

2. Kidneys remove waste

products from the blood.

One of the main jobs of the kidneysis to remove harmful waste products(which are produced by the normalfunction of other organs in thebody) from the blood. When thekidneys filter the blood,these wasteproducts areremoved andeliminated

from thebody throughthe urine.

3. Kidneys produce

important hormones.

Hormones are chemicals which help

to regulate certain body functionslikeblood pressure, the calcificationof bones, and the production ofred blood cells.

Any water or food that is not requiredby the body, as well as waste producedby the function of the body, are excretedin the urine. The kidneys clean theblood using their millions of very smallfilters to remove the excess waterand waste products twenty-four hoursevery day. The excess water and thewaste products become urine, whichis then eliminated by the body.

The kidneys receive their blood supplyfrom the main blood vessel of the body,called the aorta. About 25% of the blood

pumped by the heart flows to the kidneys.The kidneys filter, or clean, the body'stotal blood volume every 5 minutes.The kidneys are attached to thebladderby thin tubes called ureters. There isalso a tube which leads from the bladderto the outside of the body. This tube iscalled the urethraand urine leavesthe body through the urethra. You can

see these tubes and organs in

the illustration.

W h a t d o t h e k i d n e y s d o ?



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Chronic kidney disease means that thekidneys are not able to work properly.This means that there is a slow build

up of waste products, and sometimesfluid, in the body. This makes yourchild unwell.

In children, chronic kidney disease canbe helped by using certain medications.In later stages of chronic kidney disease,paying attention to his or her diet can alsohelp. These types of treatmentsare called pre-dialysistreatments. During thisstage, which may last forseveral years, your child willbe carefully monitored tosee how well the kidneysare working.

When the kidneys are more severelyaffected and near the end of theirfunction (less than 10% of normal) the

stage of chronic kidney disease may becalled end-stage renal disease (ESRD).At this stage, the build up of wasteproducts increases to the point that yourchilds health is affected. Your childmay become tired more easily, havenausea and vomiting and a decreased

appetite. At this stage, othertreatments like dialysis and/or

kidney transplantationbecome necessary to

replace kidney function.(Youll learn more aboutthese treatments later.)

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W h a t i s c h r o n i c k i d n e y d i s e a s e ?

STAGES OF CHRONIC KIDNEY DISEASE

Stage Description GFR (ml/min /1.73m2)

1 Kidney damage with normal or 90 or greaterelevated GFR

2 Kidney damage with mildly 60 to 89decreased GFR

3 Moderately decreased GFR 30 to 594 Severely decreased GFR 15 to 295 Kidney failure < 15 or on dialysis

GFR = Glomerular Filtration Rate (a measure of the ability of the kidney to filter waste products).

Children vary in size but their normal GFR, when corrected for body surface area (a measure

of size), is about the same as an adult. An average adult has a surface area of about 1.73m2 thus

a childs GFR is expressed as ml/min/1.73m2

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5

There are many causes of chronickidney disease; in fact, more than wecan explain here. Some children are

born with kidney disease or kidneyproblems. This means their conditionis congenital. Other children develop

kidney disease or kidney problemsduring their childhood years. This typeis called acquiredkidney disease. Your

childs nephrologist (a doctor who isa kidney specialist) will discuss yourchilds specific condition with you.

W h a t c a u s e s c h r o n i c k i d n e y d i s e a s e ?



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An overview...

The following is a general descriptionof the treatment for chronic kidney

disease. Of course, specific treatmentsmay vary from child to childor fromcommunity to community. Please feelfree to ask your childs healthcareteam about any details of your childstreatment that you do not understand.

Treatment for chronic kidney diseaseis planned on a long-term basis for

each child and usually involves threestages: pre-dialysis, dialysis, andtransplantation. During all stages of

your childs treatment, a proper dietand various medications will berequired.

What check-ups and tests

will be needed?

After your child has been diagnosedwith chronic kidney disease, he or shewill need to have regular check-upswith the nephrologist and othermembers of the healthcare team.These professionals will need toperform various tests on your child tosee how well the kidneys are working.Although many of these tests are quitesimple, and often painless, you willprobably want to prepare your childfor the tests. Ask your healthcare teamabout resources like books, stories,play activities and teaching dolls thatare available to help you prepare

your child.6


W h a t i s t h e t r e a t m e n t ?


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Some common tests

Two common procedures are a urine

testand a blood test. A sample of yourchilds urine is analyzed to see what isin it. Blood tests are used to determinethe amount of waste products, such ascreatinine, in the blood.

If your child is very worried aboutblood tests (because of the needle),

your healthcare team can help by

applying an anaesthetic cream inadvance so that needle pokes areless painful.

Some special tests

Sometimes your child may need tohave more specialized tests and thesemay include:

1. Kidney biopsy: This test may be

carried out if the healthcare team isnot certain about the cause of thekidney disease. If a biopsy is necessary,then your childs doctor will fullyexplain the procedure to you.

2. Diagnostic imaging: When yourchild is found to have chronickidney disease, he or she is likely

to have several imaging tests to seehow the kidneys are formed andfunction. Most of these tests arecarried out on an out-patient basis(your child does not need to stayin the hospital). The most frequenttype of diagnostic imaging test isan ultrasound examination andthis does not involve any needles

or tubes. Another common formof diagnostic imaging is X-raysused to look at your childs bones,usually the hands, wrists and knees,to see how the bones are growing.Other diagnostic imaging teststhat might be needed includerenal scans, cystograms and CTscans. If your child needs thesetests, the healthcare team will give

you more information about them.



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Diet and dietary supplements

Why is diet important?

All children need a well-balanced dietin order to grow and be healthy.Children with chronic kidney diseasehave special nutritional requirements.When the kidneys can no longer dotheir job well (especially in Stages 4and 5 Chronic Kidney Disease), it isimportant to control the kinds andamounts of food your child eats.Every child has their own special needsdepending on the type of treatmentthey are receiving. (Not to mentiontheir own food likes and dislikes!) Therenal dietitian, an important memberof the healthcare team, will help youplan a healthy diet for your child.

This section provides some basicinformation on the specific food

nutrients you may need to watch inyour childs diet. If you have anyquestions, please feel free to askthe dietitian.

Protein

Children need protein for growth andrepair of the body and to help fightinfections. Protein is found in foodssuch as meat, fish, poultry, eggs andmilk. When the body digests protein, awaste product called urea is produced.

The kidneys normally filter urea outof the blood and into the urine.However, when the kidneys do notwork properly, urea and other wasteproducts build up in the blood. Thismay make your child feel unwell.

When your child is receivingpre-dialysis treatment, you may beadvised to reduce the amount of

protein in your childs diet. This willhelp to reduce the amount of ureawhich the body produces so less ureawill build up in the blood. However,protein is very important for yourchilds growth, so your child musthave enough protein to grow, but nottoo much. That is why you and thedietitian must carefully monitor howmuch protein your child is getting.

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When your child is receiving dialysistreatment, the amount of proteinneeded in the diet will depend upon

what type of dialysis treatment ischosen. (Youll learn more about thedifferent types of dialysis treatment alittle later.)

After a successful kidney transplant,there is usually no need to restrict theamount of protein in the diet.

Energy

Energy is provided by foods whichcontain carbohydrates (sugars andstarches) and fats. Carbohydratescan be found in foods like fruitsand vegetables, bread, rice, pasta andcereals. Fats are foods like oil, butter,margarine and mayonnaise. It is veryimportant that your child eats enoughof these energy-giving foods so the

body does not break down muscle oruse protein for energy. Sometimesdietary energy supplementsmay be necessary.

Salt (sodium)

The kidneys control the amount of salt(sodium) the body needs. When the

kidneys are not working well,salt levels may buildup in the body. Thisbuild up can causethirst, puffinessor swelling (alsocalled edema), andpossibly high bloodpressure (also called hypertension).To prevent this, you may be asked toreduce the amount of salt in yourchilds diet. You can do this by notadding salt to food at the table, and byeliminating salty foods, such as canned,prepackaged or fast foods, potatochips, ketchup, etc.



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There are, however, some children whoactually lose too much salt or sodiumin their urine. If this is the case, then

there is no restriction on the amountof salt your child can have. Sometimes

your child may also need to take saltor sodium supplements.

Your childs doctor and the dietitianwill determine the correct amount ofsalt your child should have.

Potassium

Potassium is a mineral thats foundin many foods. It helps the nervesand muscles to work. The kidneys

control the amountof potassium in

the blood. Whenthe kidneysare not working

well, the level

of potassium inthe blood mayincrease. Toomuch potassium

in the body canbe dangerous

because it can harmthe heart. Your child may

have to limit foods which are high inpotassium. The dietitian will be able to

tell you what foods contain potassiumand how much potassium your childcan eat.

Calcium and phosphate

Calcium and phosphate are importantfor the growth of strong, healthy bones.In chronic kidney disease, the kidneys

cannot remove enough phosphate fromthe blood and the levels can build up.This can cause itching skin, joint painand weakened bones. Your child mayhave to limit the amount of highphosphorous foods. These include milkand dairy products, peanut butter, nutsand seeds, and dried peas and beans.Medication is sometimes given withmeals to prevent the absorption of

the phosphate from the digestive tractand so reduce the build up of toomuch phosphate in the body.

Healthy kidneys produce a specialform of Vitamin D that helps the bodyabsorb calcium. Your childs doctormay prescribe a Vitamin D supplementthat will help keep your childs calciumlevels normal and prevent the bonesfrom becoming weak.

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1 1

Fluid

The kidneys control fluid balance inthe body. When the kidneys do not

work well, it may be difficult for themto get rid of excess water. The amountof urine they make may decrease.

The excess water staysin the bodycausing weightgain, puffinessor swelling, anda rise in blood

pressure. If thishappens, it may be

necessary to reduce theamount of fluid thatyour child drinks.It is helpful to

reduce the intake of salty foods becausesalt will make your child more thirsty.

With some types of kidney disease

however, the kidneys produce a largeamount of dilute urine. This meansthat although there is a lot of urine, itdoes not contain the waste productswhich should normally be found inthe urine. If this is the case, yourchild might need to drink lots of fluid.Check with your childs doctor anddietitian about how much liquid yourchild needs to drink.

Vitamins and minerals

A well-balanced diet normally providesenough vitamins and minerals to keep

your child healthy. If your child is noteating well, your childs doctor anddietitian may prescribe a daily vitaminsupplement. A supplement is necessary

if your child is on dialysis becausesome vitamins and minerals are lostduring the dialysis treatment.

Nutrition supplements

Many children with chronic kidneydisease have decreased appetites andthey may develop a dislike for foodsthey used to love. They may feel tired,nauseous and generally unwell. Theymay not be able to eat enough foodto meet their special needs to growand be healthy. If this is the case,

your childs doctor and dietitian mayprescribe a special formula or milkshake. This will provide the extranutrition your child needs. Be sure

your child takes these formulas andmilk shakes as prescribed, becausethey must be treated with the sameimportance as medications.



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Other methods of feeding

Sometimes, if a childs appetite isvery poor, he or she is not able to eat

enough or drink the supplements.In this case, it may be necessary toconsider tube feeding. There are twotypes of tube feeding. Nasogastric(NG tube) feeding uses a tube passedthrough the nose down into thestomach. Usually, this is only used asa temporary way of supplementingfeeds. Gastrostomy (G tube) feeding

uses a tube which is inserted directlyinto the stomach, through the skinbelow the ribs, on the left side of thetummy. This is done in the operatingroom and is usually used when there isa longer-term need for tube feeding.

If tube feeding becomes necessary,members of your childs healthcareteam will discuss this with you and

your child. You can use this tube tofeed your child the specially designedformula through thetube to meet his orher nutritional needs.NG or G tubes canalso be used formedications andextra water if needed.

Although it is often a big step for afamily to agree to a G tube insertion,most often it is very helpful to the

parents and child in helping to dealwith chronic kidney disease.

Growth failure

One of the important problems thatchildren with chronic kidney diseasehave is poor growth. This is caused bymany factors. These include poordietary intake, unhealthy bones or

resistance to growth hormone. In somechildren with chronic kidney disease,the effect of normal amounts of growthhormone production is not enough tomaintain normal growth. This maysometimes be treated with growthhormone injections.

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Medications

Various medications are used in thetreatment of chronic kidney disease.

The type of medicationwill depend on the specific

needs of your child.Your childs doctor andpharmacist will explainin detail about themedications your

child will need to take.

Helpful hints about medications

1. Be sure you understand how themedication should be taken. Thismeans knowing whether it should betaken on an empty stomach, after

your child has eaten, at what timesduring the day, etc.

2. Feel free to ask what the medicationsare for and if they have any adverseeffects.

3. Some medications are hard to obtainin some communities. Make sureyou can get an adequate supplyfrom your local pharmacy(sometimes the pharmacistmay need to order certaindrugs in advance or thepharmacist may have to talkto the hospital pharmacistto work out how to make

a liquid medication foryounger children).

4. You should keep an up-to-date listof all the medications your childis taking. This is very important in

case of an emergency. Bring thislist with you when you take yourchild to the doctor, hospital, etc.

5. Make sure that alldoctors anddentists who are treating your childare aware of the medications yourchild is taking.

6. Do notallow your child to take anyover-the-counter (non-prescription)medications for headaches or painrelief without being sure that it isokay for a child with chronic kidneydisease. In general, there is only onerecommended medication for theseconditions: acetaminophen (forexample, Tylenol). You shouldcontact your childs nephrologist ifother medications are ordered byanother doctor.

7. Some families feel more secure if theirchild wears a MedicAlert braceletat all times. These bracelets help in

providing immediateidentification of yourchilds medical conditionsand medications. Thisinformation may be usefulin emergency situations.To find out how you can

obtain a MedicAlertbracelet, please contact

your local office ofThe Kidney Foundationof Canada.

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Some types of medications

1. Anti-hypertensives (blood pressurepills). There are various types of

medicines that help reduce bloodpressure and because they work indifferent ways, sometimes two ormore types may be used together tolower blood pressure.

2. Red blood cell stimulating agents(eg erythropoeitin). Thesemedications, given by a needle,stimulate the bone marrow toproduce red blood cells and soprevent anemia.

3. Phosphate binders (eg calciumcarbonate or TumsTM). Thesemedications are taken with mealsto prevent phosphate from beingabsorbed from the digestive tractinto the body (they bind phosphatein the intestines and it is passed outin the stool).

4. Vitamin D. A special activatedform of Vitamin D that helps keepbones healthy.

5. Kidney multivitamin pills.A special combination of vitaminsthat are suitable for people livingwith kidney disease.

Your childs nephrologist may prescribesome of the above medications as well

as other types of medications. Yourhealth care team will explain why eachare needed as well as how they work.

Important warnings

about medications

1. Children who are on dialysis, or

who have had a kidney transplant,should nevertake medications,herbal products, nutritionalsupplements or home remediesthat were not prescribed by theirnephrology team.

2. Prescription medications must betaken exactly as directed. If theprescribed times are not convenient,discuss this with your childs doctor.

3. If your child is taking steroids, thesemust be taken exactlyas directed bythe doctor. If your child suddenlystops taking the steroids, he or shemay have complications.

4. Many medications may not be safefor people with chronic kidneydisease. This is because mostmedications are excreted from the

body through the kidneys.5. You should neverallow yourpharmacist to substitute anothermedication for the one your childsnephrologist has prescribed. Thepharmacist must first consult yourchilds nephrologist.

Teeth

Good dental care is essential, so it is

important to take your child forregular check-ups at the dentist. If yourchild needs any dental procedures, thedentist should first check with yourchilds nephrologist to see ifantibioticsshould be used.

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Dialysis

An overview...

When the kidneys can no longerremove enough of the waste productsand excess water from the body,another way to do the work of thekidneys must be found. Dialysis is atreatment which can help do thisuntil a kidney becomes available for atransplant. Dialysis is a process whichcleans the blood, either by filtering itwithin the abdomen (peritonealdialysis) or by passing it throughan artificial kidneyusing a machine(hemodialysis).

The type of dialysis chosen for yourchild will depend upon many differentfactors. These may include whattreatments are available in yourcommunity and what is most

appropriate for your childs own needs.Your childs healthcare team willdiscuss these factors with you in detail.Together you will choose the type ofdialysis that is best for your child.

Peritoneal dialysis (PD)

In peritoneal dialysis, the blood iscleaned inside the body. This is done

using dialysis fluid, which containssterile water, salts and glucose (sugar).Some dialysis fluid remains in thebody all the time so the blood isbeing cleaned constantly. The fluid isexchanged at regular intervals, either bythe parent, the child or by a machine.You will be able to carry out thisprocess at home once you have beenspecially trained.

Preparation for peritoneal

dialysis

To be able to have peritoneal dialysis,your child must first have an operationunder general anesthetic. The purposeof the operation is to insert a softtube (peritoneal dialysis catheter) into

your childs abdomen. It is through this

tube (PD catheter) that dialysis fluidflows into, and is drained out of, thebody. Your child will have this tube aslong as he or she needs this type ofdialysis.

The place where the catheter leavesthe abdomen is called the exit site andthis area may be covered by a smalldressing or bandage. The catheter must

always be secured to the skin on theoutside of the abdomen at the exit site.After the scar from the operation hashealed, it is not painful for your childto have the catheter, but it may take abit of getting used to at first.

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How peritoneal dialysis works

Peritoneal dialysis uses the bodysown natural membrane on the inside

of the tummy called the peritonealmembrane. The peritoneal membranelines the peritoneal cavityand actslike a filter. During peritoneal dialysis,dialysis fluid flows through the cathetertube and fills the peritoneal cavity. Thisfluid remains in the abdomen for aperiod of time. During this time, waterand waste products move across the

membrane from the blood into thedialysis fluid. This process is what isknown as dialysis. After a certainamount of time, the dialysis fluid isdrained out through the same catheterand is discarded. A fresh supply ofdialysis fluid fills the abdomen andthe process is repeated. This processmay be repeated several times a day,or using a machine overnight.

How you can manage

peritoneal dialysis at home

Peritoneal dialysis can be done athome once you have received specialtraining. There are two types ofperitoneal dialysis:

1. Continuous ambulatory peritonealdialysis (CAPD)

2. Continuous cycling peritonealdialysis (CCPD)

Continuous ambulatory

peritoneal dialysis (CAPD)

In this method of dialysis, the dialysisfluid is exchanged between three andsix times a day. This is usually doneearly in the morning, at noon, later inthe afternoon and in the evening beforebedtime. Your childs healthcare teamwill teach you how to connect a bagof dialysis fluid to the end of the PDcatheter, allow the fluid to run intothe peritoneal cavity, leave it there to do

its work, and then drain it out again.This process is called an exchange.

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Continuous cycling

peritoneal dialysis (CCPD)

This method of peritoneal dialysis is

carried out at home overnight whileyour child sleeps. A machine (called anautomatic cycler) carefully measures theamount of dialysis fluid which runs inand out of the abdomen during eachcycle. (One cycle equals putting thefluid into the abdomen, allowing it tostay there to do its work, and thenremoving it.) Your childs nephrologistwill decide how many cycles need to beperformed each night. In the morning,the dialysis will be stopped and youwill place a cap on the PD catheter.Some dialysis fluid may remain inthe peritoneal cavity during the day.Any fluid left in will be drained out inthe evening when your child beginsthe nighttime dialysis.

With both types of peritoneal dialysis,your child is free during the day toenjoy his or her normal activities, and

to go to school (if your child is ofschool age).

Do not be discouraged or worriedabout managing peritoneal dialysis athome. Your childs healthcare team willmake sure you are very comfortablewith the procedure before you are leftto do it on your own. Help will alwaysbe just a phone call away.


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Hemodialysis (HD)

Hemodialysis works using the sameprinciple as peritoneal dialysis but

the blood is cleaned outside the bodyusing an artificial kidney machine.The machine is used to pump bloodfrom your child to the artificialkidney, which is connected to the sideof the machine. The dialysis processtakes place inside the artificial kidney.The blood then flows back into yourchild's body. Only a small amount ofblood is out of the body at any onetime. Therefore, the blood mustcirculate through the machine manytimes before it is cleaned thoroughly.Each hemodialysis treatment usuallytakes between three to five hours and isrepeated three or four times per week.It is usually done in the hospital.

Preparation for hemodialysis

To be able to have hemodialysis, yourchild must first have an operation.The purpose of the operation is toestablish an access point to your childsbloodstream. The access point isneeded so that blood can be takenfrom, and given back to, your childduring the hemodialysis process.The type of access used will dependupon your childs age and how long

hemodialysis will be needed.

There are different ways to establishaccess points. One form of access iscalled a central venous line (CVL) in

which a special catheter is placed intothe neck area. This involves surgicallyplacing a catheter into one of the large

veins in the neck and hiding it underthe skin, so that only the end is exposedon the chest. The advantage of thistype of catheter is that needles arenot needed for hemodialysis or whentaking blood samples.

A second type of access is called afistula. During the operation, anarteryis connected to a vein, usuallyin the forearm, but sometimes in thethigh. When the artery and the vein are

joined, the stronger blood flow fromthe artery causes the vein to becomelarger. Needles can be inserted into theenlarged vein to connect your child to

the dialysis machine.

A third way to provide access to thebloodstream is to make an internalgraft. In this procedure an artery isconnected to a vein with a short pieceof special tubing placed under the skin.Needles can be inserted into this graftfor the dialysis process.

If hemodialysis becomes necessaryfor your child, the members of thehealthcare team will discuss the typesof access points with you in detail.

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Transplantation

Why transplantation is the

preferred treatment for children

Dialysis is an effective treatment tohelp manage chronic kidney disease.However, it is usually only a short-term

treatment until akidney becomesavailable for yourchild. Sometimeschildren do not

have dialysis at all,and go straightfrom pre-dialysistreatment totransplantation.However, manychildren requirea period of timeon dialysis prior totransplantation.

After a kidney transplant, your childsgrowth and development are usuallybetter. That is why transplantation isthe preferred treatment for children.

What types of kidney

transplants are possible?

There are two types of kidney

transplants: a living donor transplantand a deceased donor transplant.In both cases, the donor must havea compatible blood group and tissuetype with your child. In a livingdonor transplant, one kidney may bedonated by a family member. Thismeans that a close relative, often aparent, offers one of their kidneys for

transplantation. If you, or someonein your family, wishes to be consideredas a possible donor, then youshould discuss this with your childshealthcare team.



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A deceased donor transplant is atransplant from a non-living donor.In this type of transplant, a healthy

kidney from someone who has diedsuddenly is used for transplantation.The family of the donor must consentto organ donation. You will not be toldthe identity of the donor. Donors arewell-screened for serious infectiousdiseases.

If your child is waiting for a deceaseddonor kidney transplant, he or she will

be put on a waiting list in a centralizedcomputer system. The amount oftime your child will have to wait fora deceased donor kidney transplant willdepend upon many factors. Thesefactors include the number of kidneysavailable for transplantation, and howclosely your childs tissue type matchesa kidney that does become available.

The kidney transplant operation

The following information will giveyou a short overview of the kidney

transplant operation. If your child isbeing considered for a transplant, thehealthcare team will provide you withmore details on the operation itselfand the care your child will need whilerecovering. All the members of thehealthcare team recognize that this canbe a stressful time for you and yourchild. They will make every effort tohelp you by being there to explain

things and to answer your questions.At all times, they will try to keep yourchild free of pain and discomfort.

Note: Sometimes a blood transfusion may

be needed during the transplant operation.

All blood is carefully screened, but if blood

transfusions concern you, please discuss this

with your childs healthcare team.


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Transplant surgery takes between twoand six hours. During the operation,the new kidney and ureter (the tube

through which the urine flows into thebladder) are put in the lower abdomennear the groin, and are attached to yourchild's blood vessels and bladder.

A temporary tube (catheter) is placedin the bladder for a few days to drainthe urine made by the new kidney.Sometimes the new kidney may notwork immediately, so your child

may need to have dialysis until itdoes. Your child will receive fluidsand medications through specialintravenous lines, usually inserted inthe arm and neck.

After the transplant operation, yourchild will usually need to spend sometime in the intensive care unit or a

special care ward. This is because yourchild will need to be closely monitoredto see how the new kidney is working.

Follow-up care

For quite a while after the transplantoperation, your child will need to have

frequent and regular blood tests, andother scans and procedures. These testsare all intended to monitor how wellthe new kidney is working. Severalmedications will be required every dayto stop the body from rejecting thenew kidney.

Before your child goes home after asuccessful transplant, the healthcare

team will fully discuss your childsfollow-up treatment. This will includethe importance of medications,what signs ofrejection to watch for,appropriate diet and exercise, andthe schedule of follow-up visits tothe hospital.

Although a kidney transplant provides

a high quality of life, it is not a curefor kidney disease. The child whoreceives a kidney transplant must takemedications, see health professionalsand have routine tests for the rest oftheir life.


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How your healthcare

team can help

Any illness within the family can cause

many different feelings, includingconfusion, anger, fear and sadness.Children with chronic kidney diseaseand their families often need specialunderstanding and support. It canbe very difficult to lead a normallife while coping with dialysis andtransplantation. Your family may haveto make changes in your scheduleand lifestyle. There may be worriesabout your childs school attendance,diet and hospital visits.

It is very important for you toremember that you are not alone inmanaging your childs care. You

have the full support of your childshealthcare team.

This team is usually made up of manypeople, each with a different role. Youwill probably meet doctors and nurseswith different specialties. You will alsocome into contact with renal socialworkers, dietitians, child life specialists,transplant coordinators, pharmacy staffand various technicians. All of thesepeople are dedicated to helping youand your child.

E m o t i o n a l h e a l t h a n d w e l l - b e i n g


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It is worth noting that the renal socialworkers particular role is to prepareand support you, your child and your

family throughout all the stages ofchronic kidney disease treatment.It is important for you to have regularcontact with the renal social worker.This will give you an opportunity toask questions, and discuss any worrieswhich may be upsetting you and yourfamily.

The clinical nurse specialist will also

help you and your child to betterunderstand your childs condition,and the changes which may be requiredin your familys lifestyle.

Play and learning

For many children, especially youngerones, play is an important way of

reducing anxiety about hospitalizationand treatments. When medicalprocedures and tests are explainedthrough play, they become lessfrightening for the children. Manyhospitals have child life specialists andspecially trained nurses who willexplain the procedures and tests.Sometimes special teaching dollsare used to help prepare children

for procedures such as dialysis andtransplantation.

Many hospitals have special playroomswhere these play and learning activitiestake place. These are safe areas wherechildren are temporarily free of needlesand doctors. Some hospitals provide

special areas for teenagers

where they can enjoytheir own activitieswith stereos,videos, etc.


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Your childs schooling

The healthcare team will be able to tellyou about what services are available tohelp your child keep up-to-date withtheir school work. This can be helpful,especially if your child must spend alot of time in the hospital, or when

your child is on hemodialysis. If your

child is able to attend school, it is a

good idea to make sure your childsteachers have some understanding ofyour childs care. Members of yourchilds healthcare team will tell youhow this can be arranged with yourchilds school.


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Special events

Your child should be encouraged totake an active part in regular familyactivities and events such as picnics,parties and get-togethers with friendsor at school. If you have any questionsabout a particular event, activity level,diet, or travel plans, feel free to consultthe members of your childshealthcare team.

Financial help

The renal social worker can advise youabout provincial healthcare benefits

that may be available because of yourchilds illness and treatment. He orshe will work with you to see if yourfamily meets the criteria for financialassistance from the provincialgovernment or other organizationssuch as The Kidney Foundation ofCanada.


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The Kidney Foundation of Canadaoffers a wide range of support servicesfor people with kidney disease. It is best

to consult your local Foundation officeto find out what services are availablein your area.


A r e t h e r e a n y s u p p o r t g r o u p s ?

This booklet has probably notanswered all your questions. The bestsources to provide you with moreinformation about chronic kidney

disease, and about living with kidneydisease, are the members of your childshealthcare team and The KidneyFoundation of Canada.

There are many educational bookletsavailable simply by calling The KidneyFoundation. Or, if you have access tothe Internet/World Wide Web, you

can visit The Kidney Foundationsweb site at www.kidney.ca.

W h e r e c a n I o b t a i n m o r e i n f o r m a t i o n ?


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Family Doctor

Pediatrician

Pediatric Nephrologist

Dietitian

Social Worker

Clinic Nurse

Pharmacist

Child Life Specialist

Local Kidney Foundation Office

Other

U s e f u l t e l e p h o n e n u m b e r s


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G lo s sa r y

AntibioticA medication used to combata bacterial infection.

AortaThe main artery of the body carryingblood directly out of the heart.

ArteryBlood vessel carrying blood away fromthe heart. Part of the circulatory system.

Artificial kidney

Used in hemodialysis to filter wasteproducts and excess fluid from thebloodstream.

Artificial kidney machine(hemodialysis machine) A machinewhich pumps blood out of and backinto a person and monitors thefunction of the artificial kidney.

BladderThe sac in which urine produced bythe kidneys is collected and storeduntil it is released from the body.

Blood pressureThe pulsating pressure exerted by theblood against the walls of the arteries.The reason for blood flow through

an artery.

CalcificationThe process by which calcium saltsaccumulate in tissues. This is a normalprocess for growing bones to makethem strong and healthy.

CalciumA mineral that is important for bone

growth and body function.

CAPDContinuous Ambulatory PeritonealDialysis. See also Peritoneal Dialysis.

CatheterHollow tube used to transport fluid toand from the body.

CCPDContinuous Cycling Peritoneal Dialysis.See also Peritoneal Dialysis.

Chronic kidney disease (CKD)

A reduction in kidney function, thatusually occurs over months or years,and results in the build-up of wasteproducts in the body.

Chronic renal failure (CRF)Same as chronic kidney disease that isnow the preferred term.

CongenitalA medical condition or disease that oneis born with.

CreatinineA waste product in the blood producedby the normal function of muscles.The kidneys remove creatinine fromthe bloodstream. Chronic kidneydisease causes an elevated creatinine.

CT scan (Computerized Tomography)A diagnostic imaging test in whicha CT scanner takes X-ray picturesand then assembles them into across-sectional image.


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Central venous line (CVL)A method of establishing access to thebloodstream to conduct hemodialysis.

Commonly called a hemodialysis (HD)catheter.

CystogramDiagnostic imaging test to provideinformation about the shape, size andfunction of the bladder. A smallcatheter is placed where urine comesout (urethra) and is slipped up intothe bladder. Fluid (Dye) is then

placed into the bladder, the catheteris removed and pictures are taken.This study can be done with nuclearmedicine or X-rays, depending onwhat information is needed.

Diagnostic imagingTests, such as ultrasound and X-rays,that produce pictures of parts or

organs of the body, which are used toassess the structure and function ofvarious organs, bones, etc. to helpmake diagnoses.

DialysisProcess of removing waste productsand excess water from the bloodstream.

Dialysis catheter

Silicon rubber tube placed in theperitoneal cavity for peritoneal dialysis.

Dialysis fluidSpecial fluid used in dialysis into whichwastes are passed.

Edema(swelling)An abnormal accumulation of fluid inthe tissues, especially noticeable around

the ankles, face (particularly the eyelids),and sometimes the abdomen.

End-stage renal disease (ESRD)Stage 5 of chronic kidney diseasethat usually requires dialysis or

transplantation to maintain life andhealth.

FistulaCreated surgically by joining an arteryand a vein. The vein then matures ordilates and provides an access to supplyand return blood during dialysis.

Gastrostomy(G tube)

Feeding tube or button insertedthrough the skin of the abdomendirectly into the stomach to feedthe child.

GraftCreated surgically by joining an arteryand vein with a special material toprovide access to the bloodstream for

hemodialysis.

HemodialysisThe process by which excess bodywastes and fluid are removed fromthe blood when passing through anartificial kidney.

HypertensionPersistently high blood pressure taking

into account the child's gender, ageand height.

KidneyOne of the two fist-sized organslocated at the back of the peritoneal(abdominal) cavity on each side ofthe spinal column.


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Kidney biopsyRemoval of a tiny piece of kidneytissue for special examination under

a microscope. Often done usingultrasound to guide the biopsy needleto the kidney.

Nasogastric (NG tube)Feeding tube passed through the noseinto the stomach.

NephrologistDoctor who is a kidney specialist.

Peritoneal cavitySpace in the abdomen, lined byperitoneum, where peritoneal dialysisoccurs.

Peritoneal dialysisThe process by which excess bodywastes and fluid are removed from

the blood using the bodys peritonealcavity.

Peritoneal membrane (peritoneum)A porous membrane lining theperitoneal cavity, through whichwater and waste products pass duringperitoneal dialysis.

Phosphate

A mineral important for bone growthand body function. In chronic renaldisease there is a build-up of phosphatein the body.

PotassiumA mineral necessary to the body, butharmful when found in excess.

Pre-dialysis treatmentTreatment in the early stages of chronickidney disease using medications and

special attention to diet.

RejectionA vigorous response by the bodysown immune system to try and destroya kidney transplant.

RenalReferring to the kidney.

Renal scanA diagnostic imaging test which usesa camera to assess different aspectsof kidney function. This is performedby injecting a very small amount ofradioactive medicine into a vein.The camera follows the movementof the medicine through the kidneysand bladder. The dose of radiation is

much less than from one chest X-ray.

Sodium (salt)A mineral which helps regulate thefluid content in the body.

TransplantationA healthy kidney from a donor istransplanted into the body.

UltrasoundA painless procedure which shows thesize and structure of the kidneys.

UreaThe waste product in blood which isproduced from protein breakdown.


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UreterThe natural tube in the body whichcarries urine from each kidney to the

bladder.

UrethraThe natural tube for the dischargeof urine from the bladder.

VeinA blood vessel which carries bloodback to the heart from other parts ofthe body.

VitaminsEssential substances needed for properbody function.

X-raysA type of diagnostic imaging testoften used to look at bones, the heartand lungs.

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The Kidney Foundation

OUR VISIONKidney health, and improved lives for all people

affected by kidney disease.

OUR MISSION

The Kidney Foundation of Canada is the national

volunteer organization committed to reducing

the burden of kidney disease through:

funding and stimulating innovative research; providing education and support; promoting access to high quality healthcare;

and increasing public awareness and commitment

to advancing kidney health and organ donation.

Since 1964, our fundraising campaigns have allowed

us to contribute millions of dollars to research,

and to provide services to individuals living with

chronic kidney disease and related conditions.

For further information, or if you wish to help us in

our efforts, please contact The Kidney Foundation

of Canada office in your area. You can also visit

our Web site atwww.kidney.ca.

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