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
with your drugs and lifelong medication.
It's just educating people in that
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
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
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
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...
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
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
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.
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)
that I should be included,
you know, just for my own,
sort of, confidence really.
At that time, Gemma hadn't had a
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
and I felt quite comfortable,
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
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
you get a lot more aware.
And that awareness can certainly
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
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
medication day in and day out.
I guess it's just normal things
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.
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