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.

Wednesday, 13 May 2015

"You need to listen" - my brother Robert

At my brother Robert's funeral, one of the songs played was a Cat Stevens song, and after that I refused to listen to our CD which kept coming on in the car, I would skip it instead! I was going shopping by myself about 2 weeks after he died, and the CD came on again. I went to change it, and felt like an internal slap to the back of the head and the words "No, you need to listen." So I half-heartedly did.  Actually, I ignored every song that came on. Few bars in to Father and Son and I get another slap to the back of the head. "Listen." I get told. "To all of it. It's for you and Jules, mostly for Jules." So I did. And I cried. Called him a bastard for making me cry while I was driving the car :)  Then pulled over to call Will. My phone rings. It's Will. Bear in mind that at the time, Julian had been talking A LOT about when can he have a transplant because he's sick of having IPAH hanging over his head. My brother died the day after Father's Day in 2012, just days before his 49th birthday, of Secondary Pulmonary Hypertension caused by Eisenmongers.

I miss him.  I wish I had listened when he told us his doctor had told him he had only a few months, instead of brushing it off with a 'Yeah, but you've been told that before."  I wish I had repaired the bridges that had been broken between us.  I wish I could share the excitement of finally going overseas with him.

https://www.youtube.com/watch?v=E-DsYmxznWA

Tuesday, 20 January 2015

Punished for having a terminally ill child



Or at least, that's what it feels like.

Now, I don’t normally like to post about our financial issues.  That’s a bit too personal for both Hubby & I, however this time I really feel the need to let the public know what happens behind the scenes for those us who are needed to care for our loved ones.

Recently, I applied for a ‘Flexi-loan’ with our bank of more than a decade (the first time we have ever applied for a loan with this bank) – Westpac - and despite the assistance of a staff member at our closest branch, I was repeatedly denied, even though when my information was originally entered into the system, Westpac’s own official loan calculator deemed it as being ‘servicable’.  Now, according to the staff member, the lending side of Westpac have said that they are ‘under no obligation’ to tell anyone why they have been denied, BUT he has also told us that a Carer’s Pension/Payment – which I am on because I have a TERMINALLY ILL CHILD – is an ‘unstable’ income, and isn’t accepted as an “income” on a loan application through Westpac. 

It should also be noted that we couldn’t apply for the smaller amount we wanted to, because it was less than Westpac’s minimum small personal loan amount, however we went ahead because it was still within our financial ability to do so.

WTF???  Seriously?  According to Centrelink and the ATO, the Carer’s Payment that I receive IS my “income”.  It’s listed on my tax return as such for goodness sake!  And yet, here I am, being punished by Westpac for not being able to get a job and earn an “income”, because I am my son’s Carer. 

So, I have contacted the Anti-Discrimination Commission Queensland and they have forwarded me the forms to lodge an official complaint, and I certainly won’t be sitting on my thumbs getting these completed when they turn up!  Perhaps Westpac may want to rethink their stance???  Even then, I’m not sure that will be enough.

I can feel myself sinking into a deep depression and I know Hubby is too.  This whole scenario has made us both sick to our stomachs. 

This is our life, Westpac, and we have to live it EVERY SINGLE DAY.  How about one of your bigwigs comes and spends a week in our shoes – a day even.  Maybe then, they’ll be able to relate to their customers instead of ignoring them from afar.

Thank you Westpac, for making an already tumultuous and difficult situation even worse. 

Friday, 9 January 2015

Recording Life


On the way home from the new Lady Cilento Children's Hospital late Monday afternoon, Julian was being his usual self in the car – and by that, I mean a little bit nutty.

So, I told him he should video himself more often – record his life – and this is what he came up with!





 



Tuesday, 6 January 2015

A trip to the new hospital!



We were at our neighbours son’s 7th birthday party last Sunday morning when my 11 year old came up to me and told me “Mum, Julian’s not feeling well.” 

I looked over to the swings – where all good teenagers and pre-teens go to play at a playground! – to see him slumped over one of the swings on his stomach with his forehead resting on the ground.

When I got to him and helped him to stand he said that he was having chest pains, so I walked him over to the picnic tables and helped him to sit down.  He flat out begged me not to call an ambulance – he didn’t want to frighten the little kids at the party – so I kept a close eye on him for a while. 

Thank you Fairy Raine!
He rested for a bit, then we did a slow treasure hunt and he had his face painted by a lovely lady called “Fairy Raine who went along brilliantly with my dare to have his face painted like a Pirate Princess (we were at a Pirate Party to, after all) – he got $10 out of it too!  By the way, I can’t recommend her enough.  She was absolutely brilliant, related fantastically to all the kids, and my own 4 thought she was fantastic. 

So, long story even longer.  He tried to get comfy on the picnic bench, slipped, bent his finger back and promptly sat on it.  Arrrggghhhh!  It swelled up like a bloody balloon, and we toddled off to the local Ambulance station to see if they thought it was broken or not.  No one was there so Will and I made the decision that I would take him to Robina Hospital ‘just in case’.  He is on Warfarin, so our worry wasn’t just that it was broken, but may be bleeding in the joint.

Waiting for results . . .



When we got to Robina Hospital, they took us straight through once they heard how he had injured his finger.  He was hooked up to an ECG, bloods taken, xrays done and they were in constant contact with the Cardiac Fellow at the Lady Cilento Children’s Hospital.  
 
HUGE tellies in the ED at Lady Cilento
  




A few hours later, he was transferred to the new Lady Cilento Children’s Hospital where he spent the night, and then spent Monday having tests done.  The new hospital is great, I just wish we hadn't had to see it so soon!
 


HUGE rooms too!



Nothing was found, and his results were all almost identical to the results from the Pulmonary Hypertension clinic in November.  The doctors are of the opinion that he just did too much.




So, now to figure out how to keep a teenager quiet for the next few days . . .