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.

No comments:

Post a Comment