Living with IPAH - Part Two

Warning- this input has one questionable word that no parent wants their 8 year old saying. Please proceed carefully (not that this blog series hasn’t had any language in it already, huh?)

 

From Julian’s point of view:

 

Wasup everybody. And welcome to MY point of view. The point of view that comes from the completely reliable 12 year old who never has anything dishonest to say…or at least not all the time.

 

Now, I have a rare heart/lung condition called Idiopathic Pulmonary Arterial Hypertension.

This entry is not of me saying (imagine these with a posh and British sort of accent) “Oh, look at me, I have a rare heart condition and the world should give everything I want… and if not I’ll throw a tantrum” NO. That’s just awful, don’t you think?

 

A question I get asked a lot is: “What’s it like to have your heart condition?” well, here’s the answer. IT SUCKS!!! Symptoms that I get are anything anyone else would not hope for. I get fatigue, hyperventilation, shortage of breath, and a whole lot more that I just cannot memorise. So, once again… MY CONDITION SUCKS.

 

The one thing that is the most irritating about my condition is the disabled car park. If you’ve read “You don’t look sick”, post #9 you’ll know. I just hate sitting or standing next to one of my parents argue over a stupid medical condition to some bozo who’s just slipped into a bloody car park just as our responsible father or mother has just been about to do the same.

 

AAAAAAARRRRRGGGGHHHHH!!!!!!!!

 

Anyway, now I’ve gotten that out of me...

 

I also have lots of food restrictions, like I can’t eat cranberries, grapefruit, or too many greens. And that fact just blows me away. Greens? Too many leafy greens? Come on!!!

One leafy green I can’t have too much of: Spinach. And that’s my favorite vegetable!!!

DOUBLE COME ON!!!!!!  

 

Anyway, I think that’s just about covered everything about being ME. From MY point of view. So, thanks for reading and I might be seeing you soon.

 

 

Blog Post by:

Julian Summers

Living with IPAH – Part One

From my point of view as a Mum:

 

One of the hardest things to accept about Idiopathic Pulmonary Arterial Hypertension was hearing that I was going to lose my son to it.  No one should have to hear that their child is being given a life sentence – especially from something that has no medical reason for happening.  And you know what?  It's not fair.  I'm sitting here at my laptop listening to Julian chatting with a mate he has over today, and it breaks my heart to think that one day, I won't be able to hear his voice anymore.  I won't see those silly faces he pulls, won't be able to wonder at how tall he's growing or feel the comforting squeeze around my waist as he gives me a hug.  One day, those bullet kisses he gives me on the cheek at night (the ones where he almost 'punches' his kiss on my cheek!) will stop.  I can't imagine a life without my first born son . . . I just know that I will lose a part of myself along with him.

 

My life seems to be full of disagreements with medical professionals, constant visits to the doctors, hospital stays for a ‘simple’ bout of gastro, trips to the chemist (I know almost all the staff by name now and definitely by face!), calls from the school . . . it goes on and on.  I’d love to be able to go a day without having to use the phrase “Jules have you had your tablets yet?” or, better yet, “Julian!  Why haven’t you had your tablets yet?!”  Right now, I’m constantly worried about the ‘flu, even though he’s had his ‘flu needle.

 

Sometimes I wonder what our lives would be like if Julian had never collapsed for that first time, if this awful condition had never become part of our everyday family life.  Would he be sporty and our afternoons be spent at sports practice and weekends at games?  Or would he still be my little bookworm that loves curling up with a great book?  I know we would be spending more time in the ‘great outdoors’ as a family, instead of Nigel taking the kids one at a time for a nice long bushwalk so our other children don’t miss out on the world.

 

Despite all this, I don’t think IPAH has to be the almost immediate life sentence (between 2 – 5 years) it once was.  I know that one day we will lose our son to IPAH but it obviously wasn’t as soon as we were told we would, and as his cardiologist – Dr. W – once told us, Julian’s life would have be about ‘quality not quantity’.  We really took that to heart (excuse the pun!) and I firmly believe that the ‘quality’ has given us the ‘quantity’ we were told we wouldn’t have.  We’ve made sure that Julian is as active as he can be, doing what he can and, being extremely sensible about it, has enabled him to lead as fulfilling a life as possible.  So many new medical treatments have become available since Julian was diagnosed, and I’m sure that there will be many more in his future.  Julian has told me that he’s just waiting for the research and technology to allow cloning of a person’s organs from their own DNA.  That way, he can have the heart/double lung transplant he may one day require and not have to worry about his body rejecting them!

 

Positive outlooks are so important, and allow our dreams to flourish where they might have otherwise perished.

 

      “Keep your face always toward the sunshine – and shadows will fall behind you.” – Walt

      Whitman