INFORMATION – The stuff you’d like to know about!

Body parts (organs) that can be a transplant

Transplant means to put a healthy body part (organ) in and take the sick bit out!

Hospitals can transplant kidneys, livers, hearts, lungs, pancreas and small bowels.

Other parts from our body called tissue can be transplanted such as bone marrow, heart valves etc

These are the hospitals (transplant centres) that can do these transplants for children (paediatric transplants)

Small Bowel (intestinal) BIRMINGHAM CHILDRENS HOSPITAL KINGS COLLEGE HOSPITAL & GREAT ORMOND STREET HOSPITAL JOINED FORCES AS A CENTRE	Heart and Lung. NEWCASTLE, FREEMAN HOSPITAL GREAT ORMOND STREET HOSPITAL FOR CHILDREN
Kidney BELFAST CITY HOSPITAL, NEWCASTLE, FREEMAN HOSPITAL LEEDS, ST JAMES UNIVERSITY HOSPITAL NOTTINGHAM CITY HOSPITAL LONDON, GUYS HOSPITAL BRISTOL, SOUTHMEAD HOSPITAL BIRMINGHAM CHILDRENS HOSPITAL MANCHESTER ROYAL INFIRMARY GLASGOW, WESTERN INFIRMARY GREAT ORMOND STREET HOSPITAL FOR CHILDREN DUBLIN, BEAUMONT HOSPITAL
Liver. LEEDS, ST JAMES UNIVERSITY HOSPITAL. LONDON, KINGS COLLEGE HOSPITAL. BIRMINGHAM CHILDRENS HOSPITAL	.

Transplant Assessment

This is the time when you and your parents (or carer) go to the hospital to find out if you really do need a healthy body part (organ)

You will more than likely stay in the hospital for a good few days.
This could be because your heart, liver or kidney etc has got sick and isn’t able to do it’s job in your body properly.

What the doctors and nurses will do is they will test all sorts of things like your blood your pee, your poo, they will check that everything is working well inside your body with x-rays and ultra sound scans (which are like cameras that take pictures of your body inside)

They may use some clever machines to see how well your heart pumps (Echocardiogram) and how good your brain works (EEG)

In some cases the doctors will need to take the tiniest little bit of your sick body part (organ) this is called a biopsy, it’s SO small they need to look at it under a microscope!) which will tell them how damaged the organ is and they will know exactly which special type of body part (organ) will be just right for you.

You will not be alone there will be other babies and children who will be there in the hospital ward with you, you will have your family with you.

There’s these terrific people on the hospital ward who are called “play specialists” who will help you whenever you need help.

They’ll get you video games, computers, books, toys, DVD's, they’ll make stuff with you no matter how messy!

They will go with you and hold your hand to any of the special places you will need to go if you want them to.

If you have any questions at all about anything in the hospital these clever friendly play specialists are the ones you should ask.

They’ll give you an answer,they can even show you with a raggy doll what's going to happen,they do not use any big hard words that you wont know either!

We have a Hospital Survival Guide, created by 2 young ladies well used to surviving long hospital stays, which some of you might find useful                                                

                                                               CLICK ON THE RED BOX

Transplant List

This list has the names of all the children who need a healthy body part (organ).

Note that this is not like a football league table  that you have to get to the top of, it's not about being 1st on the list.

If you need a healthy body part (organ) your name will be put on the list  the doctors will know that when one comes along that is just right for you (as everyone is special) they can call you and your family to come to the hospital. Don’t be worried everything will be fine.

• James - a liver
• Susan - a heart
• Adam - a kidney
• Fiona - a double lung

The hospital will make sure you have some jabs (immunizations) done to help your body fight off diseases and infections so your immunity is good & prepared before your name is put on the list.

Waiting

The time you will have to wait on your healthy body part depends on lots of things, you may have just a short wait or you may have to wait for months even years.

 Whilst you wait you could think about what will need to happen when "the call" for your transplant comes and what you would like to take with you to the hospital.

Click on the bag to see some ideas from kids and their parents of what you might like to pack in your hospital transplant bag

CLICK ON BAG                                                                            

Transplant time

Things will all happen very quickly and you have no need to feel worried.
You will be given some medicine that will send you into a deep sleep, you will not even know that the doctors have taken out your sick body part (organ) and put in a healthy one.

When you wake up in your hospital bed you may feel uncomfortable at times, you should not have any pain as there are special machines that will be with you to keep everything in your body working well until your new body part (organ) settles into it’s new home, inside your body.

The doctors will make sure you are comfortable, they have some really powerful medicines that are brilliant at keeping any pain away!

     Your face may become more rounded this is called a “moon face” which happens with some of the medicine you will be taking.

The nurses, doctors and the play specialists are all there for YOU and to make sure YOU are doing just fine.

Immunosuppression (say it like this IM-MUNE-O-SUP-RESH-ON)

Crikey that is a big hard word!

What it is is this wondrous special medicine that you will need to take to keep everything in your body working well together.

There are different types and because everyone’s special they will get their own kind and their very own exact amount that works well for them.

The medicines themselves have funny names, very hard to say some of them, just look at these medicine names, we think they sound like names of dinosaurs!

Name (How to say it)

Tacrolimus (TAK-RO-LY-MUS)	Cyclosporin (SY-CLO-SPO-RIN)
Azathiaprine (AZA-THY-A-PRIN)	Prednisolone (PRED-NIS-O-LONE)
And the biggest one of them all Mycophenolate mofetil (MIKE-O-FEN-O-LATE - MOF-A-TEEL)

There are many more immunosuppression medications,here are just a few... Sirolimus, Basiliximab, Daclizumab, Dexamethazone ,don't worry if your own special medicines aren't here you will have your own special ones, everyone's different your doctors know what works best for your body.

A very good source of information on immunosuppressions can be found by clicking HERE

While you are taking this medicine the doctors will need to make sure the levels (amounts) are correct for you and you will need to let them test a little of your blood each week to begin with, it wont be so often as time goes on. Be brave!

What this special medicine does is it prevents “rejection” which you can learn about next…

Infection and Rejection

DON’T PANIC!

These two words “infection” and “rejection” could send terror into anyone if not understood properly!

No matter what we do in our day to day lives we cannot escape the bugs that float everywhere around us! Some of the bugs can float, some of the bugs sit around.

Our body can get a bit confused sometimes with our new body part (organ), it’s a bit like you and your best friend, you get on really well together but now and then you fall out!

You will have some defence against the bugs with the jags/jabs (immunisation) you were given as a baby and while you were waiting on the list for your new body part (organ).

Also some of the medicine you take keeps you protected from some of these bugs too!

Infection

    IMMUNITY Versus TRANSPLANT

After transplant you are given medicine to help keep your new healthy body part (organ) safe. These special medicines keep your immunity low on ammo so there aren’t so many battles of “Immunity versus Transplant” (you know like a wrestling fight or knights on horseback kinda stuff) you are more likely to catch colds, tummy bugs, chickenpox etc. because of this.

By the way your immunity is all about your body battling with the bad bugs and viruses that try to invade our body and make us unwell.

Viruses like chickenpox, which are yucky itchy spots,are easily passed on (infectious) so we need to be careful about being around people who may have them. Let your doctor know if you have had what is called “direct contact” (sounds like something out of Star Trek!) which means you have been "face to face" and "15mins or more in the same room" with someone who has it. The doctors will get you some medicine to take to keep you safe.

The majority of episodes of infection can be treated successfully with a course of special medicines called anti-biotics and anti-virals which will send the infectious bugs packing!

Rejection

This means that your body isn’t too happy having your new body part (organ) inside it and so your immunity attacks it during that battle we mentioned before “Immunity versus Transplant”
Rejection is often detected quickly and treated with mega-blasts of steroids (which will be put into your body via a line/canula), giving your immunity a wee kick up the backside to stop it fighting!

Life after transplant

Well what can we say…how about…

ENJOY IT!…HAVE GREAT FUN!

The most important bit of advice I could ever tell you and it’s the best way ever to help keep you and your new body part (organ) safe.

Bet you can’t even guess, it’s not anything hard to do, it’s very easy in fact

After you’ve been to the loo, before you eat or cook, after you’ve played in the muck and after stroking pets and animals…

Remember to always wash your hands!

told you it was easy peasy lemon squeazy!

Also when in the sun remember to keep your skin well protected, your medicine increases the risk of skin damage EVERYONE should keep well protected from the sun but for you it's extra important. Ask your doctor for some sunscreen.

Everyone simply has to have fun and enjoy life… so please try and not get too worried by it all, don’t keep worries to yourself, talk about it with someone…
If there’s ever something wrong there will often be a way to make it right!