Thursday, September 22, 2011

A Call for Help

I just arrived home from the Hello Etsy event that was on tonight, to find the following email in my inbox from the Heart and Lung Transplant Trust (Victoria) Inc

Page Link

The Age newspaper reported on 17 September that The Alfred is considering restricting the number of lung transplants it performs due to budgetary constraints. 

If there is one issue our Trust should take a stand on it is this one.
As we all know, transplant is lifesaving surgery and the suggested reduction in the lung transplant program will mean likely premature death for some of those on the waiting list.  In addition, it will also have an adverse impact on donor rates which defeats the purpose of recent government expenditure and advertising that has gone into this great initiative.

The Trust is deeply disturbed by this report and is considering how best to address the issue with The Alfred and various government stakeholders. 

The Committee urges all members to take up this fight with their State government representative. 

We would also encourage letters be sent to the following recipients:

Minister for Health
The Hon. David Davis, MLC
GPO Box 4057
Victoria 3001
 This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Premier of Victoria
The Hon. Ted Baillieu, MP
Office of the Premier
1 Treasury Place
GPO Box 4912V V
Victoria 3002
 This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Andrew Way - Chief Executive
The Alfred
P.O Box 315
Victoria 3181
 This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Members may wish to use the following wording to help their drafting.

Can you spare 15 minutes for me.... please?

Friday, September 16, 2011

So what's it really like?

Beware - Whiney Post Ahead!

I get bizarre comments from people all the time (this week it was at the Supermarket and at Captain Snooze).

Most of them are along the lines of "Gee that must be a real pain to drag that trolley around everywhere you go?". Ummmm well of course it is! I don't do it for fun and hi-jinks.

But I think the thing that I find even more frustrating is that unless you have a lung disease, and you can't breathe, then there's no way that you can appreciate just how hard it is to do anything and everything. I get short of breath just from talking!

You can sort of think of it like this - imagine that your mouth is firmly taped shut and you have to sprint for a kilometre only breathing through your nose.

You can't get enough air in and out of your lungs to provide enough oxygen for your body.
The lack of oxygen is making your heart race at over 140 beats per minute as it speeds up trying to distribute the small amount of oxygen left in your bloodstream.
You start to feel dizzy and nauseous, and you can't see properly.
Everything is just black.
You can't think.
You can't talk.
Then you feel like your head is in a vice and your brain is about to explode.

It's absolutely exhausting.

Friday, September 9, 2011

9 Days

Gosh just realised that I hadn't been back to update this poor little forgotten blog!

Well, I've been on the transplant waiting list for a whole nine days now.  I'm slowly sorting things out and ticking things off the'to do' list.

The first thing that I had to sort out was the problem with my intragam infusions interfering with my blood results.

Every four weeks, I have to have a cytotoxic antibody screening test. In very simple terms, this is to do with matching donor and recipient organs to prevent organ rejection after a transplant. I've had to change the intragam routine to four weekly so that I can go to pathology just prior to have the CYT blood test and then head upstairs to have my infusion. They'll monitor my IgG levels, and if they drop too much from the time extension, they'll look at increasing the dose that I receive.

I also managed to go to the furniture shop and order some new single beds for the spare room. I can't really make my mum sleep in a bunk bed for 3 months!

The third thing I did this week was buy myself a huge bottle of phisohex from the chemist. When I get the call, I have to have a shower and completely cover myself with the stuff to make sure I'm nice and disinfected before I get to the hospital (oh, the joy)!

So thats it for the moment... no more news on this front, although I did make a little joke on twitter yesterday.

My sister (who'll be my official carer) is in hospital at the moment, and my mum (who'll be my live-in babysitter afterwards) is scheduled for surgery this coming Friday.
What are the chances that the transplant co-ordinator will call?