CHILDHOOD LIVER TRANSPLANT
EPISODE 2: LIFE AFTER TRANSPLANT

I think a lot of people think
you have the transplant and that's it.

ALEXANDRA RECEIVED LIVER
TRANSPLANTS AGED 8 AND 13

There's a lot of check-ups.

There's little hiccups
that can happen along the way.

There's a lot of fixing and adjusting
with your drugs and lifelong medication.

It's just educating people in that way,
I think.

We had to set up who was going
to look after her medically.

GEMMA RECEIVED HER
FIRST LIVER TRANSPLANT

JUST BEFORE HER 2ND BIRTHDAY
AND ANOTHER 9 MONTHS LATER

She would go to King's College first,
twice a week.

So that, in itself, was quite difficult,

to go up and down to London
twice a week.

And she did regularly see
the local hospital as well.

I think the problem after the
transplantation and returning to school

was not my...
My peers were all very normal

and, you know, they may have missed me
for a couple of months,

but they didn't really notice
that I'd been gone.

But I think,
with regards to my teachers,

I didn't necessarily have a problem
with them treating me differently,

like being careful
with me being fragile,

they just didn't...
No matter how much we told them,

they didn't always understand
that I would still need time off.

It was always the case of trying to
treat Gemma as a normal child

because the whole point of doing it

was in the hope that she would
have a long and normal life.

I think the hardest thing, as well,
was when she did start school,

she missed an awful lot of schooling,
the initial years.

She didn't go to playgroup
or nursery until she was four.

And then the local council
were very good

and paid for her to go to
a private nursery for a year,

just so that she could
catch up a little bit.

She never actually had to
repeat any years at school

because they gave her an amazing
amount of help with extra classes

and a support network in the school.

I was given a personal tutor
when I was at school...

GWILYM RECEIVED
LIVER TRANSPLANTS

AT 6 MONTHS AND 7 MONTHS OLD

..to, basically, support me
and guide me through school.

Which was very helpful.

Growing up, my dad was very proactive
in telling me about my medication.

As a child,
I always had a little chart on the wall.

And I had to tick it off
as I took my medicine,

which is really
quite a good thing to do.

I suppose, as far as scheduling
appointments and medication...

..children nowadays have mobiles.

You know, set up an appointment
in your calendar

to remind you to take your medication
every morning.

Appointments, you know,
schedule an appointment in your phone

to say "I have an appointment that day."

That is literally what I do.
Because if I didn't, I would forget it.

I've got a memory like a goldfish.
(laughs)

So technology is a lot better.

Sticking notes around the bedroom
if you have to.

Just anything that
that person can relate to,

that they will find easy for them.
And each individual is different.

You are more susceptible because
you're on immunosuppressant drugs.

LUCY RECEIVED A
LIVER TRANSPLANT AT 3 YEARS OLD

You do have to be more conscious
about your health than other people.

But I never really noticed
much of a practical difference

when I was in school.

The only thing
I can really remember is...

..the doctors not being very keen on
me taking part in swimming lessons

with the other school children.

But my mum sort of... (laughs)

..persuaded them
that I should be included,

you know, just for my own,
sort of, confidence really.

At that time, Gemma hadn't had a chicken
pox vaccine because it didn't exist.

And she hadn't had a measles vaccine

because we didn't realise
how vitally important that was

before her transplant.

And because they're live vaccines,
she can't have them now.

So a lot of her school time, she missed

because she had to avoid
chicken pox and measles.

I've been very fortunate
that I'm still here today

27 years after the transplant
with the same liver.

FRANK RECEIVED A LIVER
TRANSPLANT AT 8 YEARS OLD

Yeah, there's been issues since.

And I have had more surgery since

and there has been, probably,
three or maybe four incidences

of being a hospital in-patient again
and having more surgery.

And I think, as you get older,
you take more of that in

and that can become more emotional
and difficult to cope with at times.

But despite that, I feel that, yeah,

the situations which arose
were well-managed

and I felt quite comfortable,
relatively.

Although, at times,
it could be difficult.

Without a doubt.

I had an infection called cholangitis...

TREATMENT FOR AN INFECTION THAT
OCCURRED BEFORE HIS TRANSPLANT

LEFT GWILYM WITH SOME
CONTINUING HEALTH PROBLEMS

..which attacked my liver.

But I was given antibiotics
called gentamicin.

And that has left me with nerve damage

in my ears
and my fingertips and my toes.

The support provided through family
and friends in the hospital itself

made it a lot more bearable
than it could have been.

But I think, certainly, as you grow up,
you get a lot more aware.

And that awareness can certainly make
being in hospital more difficult.

As an adolescent,

you think very differently to
how you do as an eight-year old.

And I think that needs to be...

You know, that is and has been
increasingly recognised.

And that has certainly helped me
in the way that they...

The hospital treated me
very differently and more maturely

when I was 16
and later on in my early twenties,

compared to the treatment
I received as an eight-year-old.

You do think of things like,
"Will I ever get a boyfriend?"

"Will they like the fact that
I've got a massive scar on my stomach?"

It gets a bit dull when you have to take
medication day in and day out.

I guess it's just normal things
like that.

For my sister, with her medication,
it caused her to get quite bad skin,

so that's another factor for her
to then stress about as a child.

But I tried to...

I don't know, I think everyone has
their own issues and their own problems,

so I tried to not focus too much on that

and just try and turn everything
into a positive.

I'm one of them annoying
optimistic people. (laughs)

You know, I did go through
a sort of a phase...

..and I think it's actually
quite common with transplant patients

when they're teenagers,
where I, sort of, felt quite guilty.

And, sort of, maybe unworthy
of having had a transplant.

Mainly because I had other friends
who weren't lucky enough

to live beyond their transplants,

or maybe died before
they received an organ.

So, I suppose, yeah, as a teenager,

I did go through a bit of a phase
where I did feel quite guilty.

But it didn't last long.
I mean, you can't, sort of, dwell.

You've got to look at it
in a positive light

and realise that, actually,
this is something to celebrate

and, you know, use as a sort of...

Well, take advantage of the fact
that you're still here.

FOR MORE INFORMATION AND TO
SEE THE REST OF THE SERIES VISIT:

www.nhs.uk/childhoodlivertransplant