Kailee

What is your age and gender?

I am 10 and female

What is your liver condition?

I have auto-immune liver disease and I have had two transplants. The first one was in November 2007; the second was in 2008 January.

How old were you when you was diagnosed?

When I was diagnosed I was eight, it was only about a week before my first transplant.

How did you feel?

I can't properly remember because I wasn't really with it when I was told. I think I must have been too busy being poorly to feel much!!! I do remember telling my sister and us both crying, I told her what I had been told about what I would be like for a while before and after my transplant.

How were you told?

My doctor and the liver liaison nurse told me in my cubicle. They explained what was happening to me and what they would do.

How does it affect you?

hmmm...... well I have to be careful about going too close to people with colds or anything. I also have to be off school because my immune system is low from the medicine I take. Sometimes I feel like I am different to my friends. Mostly, I just get on with it because I can't do anything else.

Are you on any medicines?

I used to be on loads more. Now I am only on:
Tacrolimus
Prednisolone
Ursodeoxicolico acid
Omeprazole
Asprin
Magnesium (temporarily)
Nifedipine
Sirolimus

How often do you go to appointments?

I go to BCH every month; it used to be every other week though!!!
I get bloods locally every week.

How are you treated there?

I have never met soooooooooooo many nice people. All the nurses and doctors, surgeons and cleaners, all of them, everybody in the whole hospital is great. They treat me like a person not a patient and speak to me directly as well as to my parents, make me feel like I can make my own decisions.

What are the good and bad things about having a liver condition?

The good things are meeting such a great team and to help with fundraising, also I have made great friends and get to go to the transplant games!!! Yay!!! GO BCH!!! Obviously there are also bad things about my condition, this may sound weird but one of them is not being able to go to school! Also taking medicines and having to be careful is annoying!

Does anything worry you about having a liver condition?

Of course, I mean I wouldn't be human if I said no!! I am seeing a psychologist and that helps a lot because if I don't want to talk to anybody else I can talk to her. I also have very supportive family and friends. This website also helps and the transplant games because it tells me other people have gone through very similar things.

Have you got any messages for other young people with a liver condition?

I think that you should try not to be afraid and always have hope! It helps if you talk to somebody if you are worried, don't be embarrassed about anything, people will understand. and live your life as normal as possible, even if you have scars or medicine you are just as special as anybody else if not more!!!

Any other comments...

I would like to thank every single person who has helped me through this- hospital staff, friends, family; the whole lot!!! Also this website helps because it gives people hope when they hear others stories!!! THANKS SOOOO MUCH EVERYBODY!!!!