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| My younger siblings and I |
I am feeling shocked. Well, to be honest, I am feeling
like any teenager right now, with all these emotions raging inside me. But most
of all I was feeling shocked. Here, let me tell you why.
Last Thursday (25th June) I was at my
eight-weekly clinic appointment (or check-up, whatever you want to call it) and
I was bored out of my mind. It was
literally one of the most boring days of my life. When I was talking to
friends, or seeing one of the doctors, that, was different. I had something to
do. Even though it is tiring and tedious talking to cardiologists and physios
and psychiatrists and cardiac fellows, etc. It gives me something to do. But,
when we’re just sitting there, doing nothing but waiting…. Ugh. Talk about not having anything to do. And then, when
I go to make a cup of tea for mum, I get told off, getting told that “us
children aren’t allowed in there”. Being one to respect older people (in most
cases) I walked out and left it alone. That didn’t mean I wasn’t just a little
ticked off though.
Anyway, while I was waiting for my final appointment, I
sat in a beanbag (well, more like lay in my beanbag) wondering about what I was
going to do when I got home, when I fell asleep for about two hours. Although
we thought that my final appointment – the one with all my doctors – would be
at either 1:00 or 2:00, I ended up waking up at about 4:00 for the appointment.
Go figure.
I
walked into the consultation room, still dozy and groggy from sleep, expecting
the normal brief about how my INR has been going, keep doing my regular
exercise, blah blah blah. What I did most definitely not expect was for my
cardiologist – Dr. W – to tell Mum and I that I was going to have to be put on
a new medication called Prostacyclin (Veletri). If you aren’t familiar with
this medication, let me tell you about it. Basically, this medication will hopefully
make me the healthiest I have ever been, along with the added bonus of making
me feel a whole lot better. But, like any good thing, it comes with a price.
Basically, this medication being given to me is
“Like
a doctor telling a paraplegic that his legs are cured but he still can’t walk
for the rest of his life” – Will (Dad) Forester, a couple of days ago.
So,
basically, I won’t be able to do most of the stuff I can do right now. Things
such as:
Rollercoasters
Water
Slides
Swimming
Kicking
a soccer ball around
And
more.
Which
is honestly going to drive me absolutely crazy over the next couple of years,
or until the oral medication comes out. But that’s OK! This will give me way
more time to practice my hobby. Shhhh, my hobby is a secret. No-one shall know.
The
way I felt when I was told that I’d have to start Prostacyclin was a very
strange feeling. Because I had been told in the past that it was only a
medication to be used as a last resort, I was furious. So very, very angry.
But, then, there was the feeling of excitement. The feeling that said to me
that maybe – just maybe – things would go upwards for a change.
Right
now, at this moment, I still feel the same way, sort of. I still feel angry
that I have to go on a “last resort” medication, but it’s more suppressed. Also
it’s suppressed because Mum told me that Dr. W has never led us astray before.
But things are definitely going to get better, based on past results. So I will
be looking forward to that.
That’s
all from me this time. I’m not sure if I’ll be writing more blogs for Saving
Jules, but if I’m asked to I will definitely do it. It was a pleasure writing
down my feelings and getting them off my chest.
Until
next time, have a good night and good day.
– Jules
