Saturday 4 July 2015

A Message From Jules



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

Wednesday 1 July 2015

Hit by a Bombshell



At Julian's last appointment of the day last at the Pulmonary Hypertension Clinic last week (Thursday 25th June 2015), we had a bit of a bombshell dropped on us.  It was one of those appointments when I wished Will had been with me, but we have 3 other children in primary school and someone needed to be home for them when they came off the bus.  I’m just thankful my Mum had gone in with us this time to visit my teenage cousin who was in hospital for a ‘tune up’ for Cystic Fibrosis, because I was absolutely shell shocked when we walked out of our final appointment.

Exhausted after a day of testing
Long story short, sometime between September and the end of the year, Julian will be started on a medication called 'Prostacyclin', which 'inhibits platelet activation and is also an effective 'vasodilator'. It will be given through a PICC line or a Hickman line.  As I understand it, this used to be a 'last resort' medication, but Julian’s cardiologist has been in contact with other specialists in the field, and it is now thought it is a far more effective preventative, rather than a last resort, as there is no guarantee how effective it would be when people got that sick that they had no choice but to be put on it.

At first, Julian was on see-saw of emotions, ranging from “At least I will feel better” to “You would all be so much better off without me, look at all the problems I cause."  Now, he seems to be very accepting about it. 

This is going to be such a huge lifestyle change for all of us and there are so many things I want Julian to experience before he has to start on Prostacyclin - which will be very restrictive to what he can and can't do. I want him to go to town on all the things he won't be able to do once he starts. New Zealand. Water parks. New Zealand. Roller coasters. New Zealand. Swim with dolphins. Did I mention New Zealand???   As if Julian doesn't miss out on enough of life, now he will be even more restricted.

This is completely unexpected for us, and not something you can ever plan for. We have done our best to make sure we can do everything together as a family. Some of you may not know, or may not realise that Julian's condition - Idiopathic Pulmonary Arterial Hypertension - is terminal. That means it will kill him. Not might. WILL. It's not a matter of if, but when. This is why we want to get as much done for him as possible.

Our family is so appreciative of all your support.  Julian especially loves the messages of encouragement he receives from you all.  Keep an eye out for a blog post from him, to all of you, letting you know how he felt, how he feels now, what he will miss and what he’s looking forward to.