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Small BowelBIRMINGHAM CHILDRENS HOSPITAL  |
Heart and Lung.NEWCASTLE, FREEMAN HOSPITAL  |
KidneyBELFAST CITY HOSPITAL |
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Liver.LEEDS, ST JAMES UNIVERSITY HOSPITAL. |
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Transplant Assessment
This is the time when you and your parents 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 books, toys, videos, 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 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 and not use any big hard words that you wont know either!
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, the names are not ordered.
If you need a healthy body part (organ) your name will be put on this list so as 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.
- name 1
- name 2
- name 3
- etc
Waiting
The time you will have to wait depends on lots of things, you may
have just a short wait or you may have to wait for months. 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)  |
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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
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, we do need to be careful about. Let your doctor know if you have had what the doctors call “direct contact” (sounds like something out of Star Trek!) which means you would have to have been "face to face" and "15mins in the same room"! They’ll 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 get it to calm
down and stop 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
Remember to always wash your hands!
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…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 use high protection factors in the sun
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!
If anyone has a story to tell we would like to hear it or if you have a website you’d like to tell us about please contact us info@transplantkids.co.uk
