Friday, June 24, 2011


Tomorrows mission is to sort through and re-organise the last twenty-two years worth of x-rays and CT scans to take in next week. I'd estimate that there's probably at least 100 films. Unfortunately every time someone goes through them, they never put them back into their matching envelopes, and my filing system goes out the window.

I went to have an updated one taken today.

That's a particularly bad mobile phone photo of it in front of the venetian blinds in my bedroom (I don't actually have any extra horizontal ribs).

This is what a normal one looks like for comparison.

But first, I'm heading to the Boathouse for lunch with some girlfriends - much more fun!

Thursday, June 23, 2011

It's time

When I last saw my own Respiratory Specialist a few weeks ago, we had a good chat, and he recommended that it's probably time to go ahead and consider heading down the transplant route.

I had an appointment at the Alfred on Tuesday morning, and they agreed that with my lung function as it is now (hovering around 22% of normal) and being reliant on oxygen 24/7 since last year, the benefit could now outweigh the risk.

I met the Transplant Co-Ordinator and the Social Worker for the first time, and we set some dates.

I'll be heading in to stay for 3 full days of pre-transplant testing in early July.

At the completion of all of the testing, the results are reviewed by a medical panel, and then they will make the decision as to whether or not I'll be listed for a double lung transplant.

I'll write more about things as they happen, but for now, that's the basics, in black and white.

Sunday, June 19, 2011

The Oxygen Situation

I recieve lots of invitations from lots of wonderful friends to hang out, attend an event, go out to eat etc.

I always put on a brave face and try to join in as much as I possibly can, but I know my friends get disappointed that I can't always say yes.

Sometimes it's because of a lack of time and the general exhaustion that goes along with having a chronic illness.

A lot of the time, it's because being attached to an oxygen source 24/7 is really hard work.

Oxygen is funded on a State level and the rules are different in each and every State.

It's only available after you have been oxygen tested, and an application has been completed by a Respiratory Specialist, and then approved via the Department of Human Services - Aids and Equipment Program.

The maximum dollar amount funded per month is $200. This amount is supposed to cover the following:

Rental - Oxygen Concentrator (large electric machine that converts air to O2)
Rental - Portable Oxygen Bottles
Rental - Oxygen Conserving Device (which fits to the top of the portable bottles)
Rental - Oxygen Trolley (to drag your bottle behind you as you get around)
Portable Oxygen Bottle Contents

I took the option of purchasing my own Oxygen Concentrator (at a cost of around $2500) so that I could receive more funded portable bottles per month.

But, even with that, I'm at the maximum limit per month of 10 bottles.

If I'm very frugal with the flow rate (I use 2 litres per minute resting and 4 litres per minute walking), then I can get a bottle to last for a a maximum of about 10 hours.

So, when you do the math, I can leave the house for 10 lots of 10 hours. Make that 10 days per month.... out of 31.

Once I run out, I have to pay full price of somewhere between $17 and $25 per bottle, depending on the size and the supplier that I order from.

So if I decide that I'd like to go out for the day, and I've used my allotted oxygen for the month, I need to budget for the extra cost of leaving the house, but I also have to plan way ahead of time to even get a delivery from my supplier. I also need to check to ensure that I have enough oxygen in the car to cover me for the amount of time that I'm planning to be out for.

It's extremely frustrating, but I just really can't do everything I want to do.

Saturday, June 11, 2011


While I have absolutely no problems writing for my other blog, I'm still a little bit stumped about this one.

I've always been very guarded about sharing information about my medical condition. It stems from all the job interviews that I went through when I finished Uni in 1995.

I was looking for a position in the food manufacturing industry, so each and every interview had a medical questionnaire. I knew that I had to fill them out truthfully, but I also knew that as soon as they knew about my condition, I wouldn't make it through to the next round of interviews, no matter how high my marks, or my relevant experience and qualifications.

When I finally did find full time work, it was in manufacturing, but not food, and I was down to my last $12.
There was no medical questionnaire and I didn't have to voluntarily disclose anything (thankfully).

But then. two weeks after I started, I was told that I had to go and have a pre-employment medical. I started to panic.

The pre-employment medical took place at one of the local medical clinics. First up, one of the clinic nurses took me through to perform all of the relevant tests, and then I was to see the doctor, and he would check the results and discuss my relevant medical history.

Everything was going along swimmingly until the nurse took me into one of the rooms and I spotted the spirometer.  She attached the nose peg, and asked me to take a deep breath, and then blow as fast and hard as I could.... which I did.

She had a puzzled look on her face, and then asked me to do it again.

After the second try, she turned around and said, "I think the spirometer is broken", and so I had to break the news that the spirometer wasn't actually broken at all!

It's quite amusing to me to go back and look at these results from 1996.

At an FEV1 of 49% of predicted normal in 1996, I could still do everything that I wanted. I was even still able to play sport. No-one would have ever guessed that there anything wrong.

Sheesh, how things have changed!