Today started off like any other day.
I had big plans to actually get out of bed on time, head to Pulmonary Rehab and then go and meet Carly for lunch.
The alarm went off at 8AM and I remember hitting snooze at least three times.
At 8.41AM my mobile phone rang, and it was a mobile number calling me. I assumed it was the cabinetmaker as I'm finally getting my disability kitchen mods after two years of waiting.
It was actually one of the Transplant Co-Ordinators.
They had some donor lungs that were a match and they couldn't say whether I would get a transplant today, but it was a possibility and I should prepare and they'd call me back. Luckily I was still asleep and hadn't had breakfast at that stage, although I was allowed to drink half a cup of coffee.
So I went through the drill - nebs, shower, disinfect, clean clothes, and wait for another call.
At 10.08AM they called back and were still unsure whether it would go ahead but needed me to come into hospital just in case.
We went through the first bits of prep / paperwork / bloods etc and were just about to do an ECG, when at about 12.50PM I was told that it wasn't going ahead today.
There was another lady who was also a perfect match for the donor who is in dire need of a transplant right now to save her life. I hope she pulls through, and I hope the third time will be the one for me.
Friday, November 16, 2012
Monday, November 5, 2012
Photo Essay
After trepidation, desperation and complication, finally hope, and home
I saw and read this article in the newspaper last week, but I've only just taken the time to play the video and watch the photo essay. It's quite amazing.
Friday, October 26, 2012
A Step Back in Time
This photo has nothing to do with anything apart from the fact that this door makes me want to giggle every time I sit in the waiting room.
Anyway.... I went to see my Respiratory Specialist today. We lamented the fact that I still haven't had a phonecall, and pondered the reasons why, and had a chat about the olden days.
In the olden days, he hand wrote all of my notes on foolscap paper, and the receptionist would file them inside a manila folder. These days, everything is on the laptop.
I asked him if he could find the oldest pulmonary function test results that he had on the laptop. I started seeing him in 1990, but the oldest he could find in a hurry were from 1993.
In 1993, I was 18 years old, 169cm tall, and weighed 59 kgs.
In 1993, Melbourne phone numbers were still only 7 digits.
In 1993, I played Basketball and Netball and was in my first year at Uni.
In 1993, I could run up and down flights of stairs at work with no problems.
And this is today.
Sunday, October 21, 2012
One Year Ago Today
Just marking time again.
One year today since that 4AM phonecall.
After receiving that call after only seven weeks, I would have never thought that I'd still be waiting one year later.
It's worrying.
I don't know whether there haven't been any matches, or whether there have been matches but someone else on the list is more ill than me and closer to the end without a transplant.
Trying not to think about it.
Had to just get the words out of my head.
One year today since that 4AM phonecall.
After receiving that call after only seven weeks, I would have never thought that I'd still be waiting one year later.
It's worrying.
I don't know whether there haven't been any matches, or whether there have been matches but someone else on the list is more ill than me and closer to the end without a transplant.
Trying not to think about it.
Had to just get the words out of my head.
Friday, October 12, 2012
A Gracious Gift
You may remember Will from A Gracious Gift.
I posted his video here a while ago, or you may have seen him in print and tv advertisements.
Will needed a heart/double lung transplant by Christmas to save his life.
I was so happy to see this on Facebook just before my pulmonary rehab session thismorning.
More from Will at Don't Bury Me
Wednesday, October 10, 2012
Deleting
I was trying to take photos on my iPhone yesterday afternoon when a warning flashed up that the memory was nearly full (no wonder with 9068 photos)!
So now I'm sitting here deleting and I came across these.
The aftermath of the false alarm.
Counting the needle holes in that photo, there was at least 14 attempts at the epidural. No wonder I had a backache for two weeks. Ouch.
Anyway.. the Ombudsman's report into last years closure of the Lung Transplant program at the Alfred was released today.
Here's today's Age Newspaper report:
The Alfred hospital in Melbourne turned away a set of lungs during a week-long closure of its lung transplant program due to a lack of funding, the ombudsman has found.
But the lungs were from a 71-year-old and would have been unlikely to be used had the program been operating due to the person's age.
Alfred Health shut its adult transplant program from September 22 to 28 in 2011.
It had been expecting $3 million in funding from the Department of Health that did not eventuate.
Ombudsman George Brouwer said during the closure, a set of lungs from an obese 71-year-old was rejected.
He said due to the person's age they would not have been used had the program been running, but it was lucky more organs were not rejected.
"While my investigation concluded that the closure did not appear to have had an adverse impact on patients in critical need, it was fortuitous that The Alfred only received (and rejected) one organ offer during the closure, as in previous weeks it had received up to eight offers," Mr Brouwer said in his report tabled to parliament on Wednesday.
He criticised the hospital for failing to conduct an independent costing review of its transplant program, despite promising to do so one year ago.
Lung transplants at The Alfred doubled from 2006-07 to 2010-11 as a result of the federal government's initiative to increase organ and tissue donations.
Clinical director Professor Trevor Williams said the program's staff and funding was based on the historical figure of between 40 and 45 lung transplants each year and the hospital was tracking to perform twice that in 2011-12.
AAP
So now I'm sitting here deleting and I came across these.
The aftermath of the false alarm.
Counting the needle holes in that photo, there was at least 14 attempts at the epidural. No wonder I had a backache for two weeks. Ouch.
Anyway.. the Ombudsman's report into last years closure of the Lung Transplant program at the Alfred was released today.
Here's today's Age Newspaper report:
The Alfred hospital in Melbourne turned away a set of lungs during a week-long closure of its lung transplant program due to a lack of funding, the ombudsman has found.
But the lungs were from a 71-year-old and would have been unlikely to be used had the program been operating due to the person's age.
Alfred Health shut its adult transplant program from September 22 to 28 in 2011.
It had been expecting $3 million in funding from the Department of Health that did not eventuate.
He said due to the person's age they would not have been used had the program been running, but it was lucky more organs were not rejected.
"While my investigation concluded that the closure did not appear to have had an adverse impact on patients in critical need, it was fortuitous that The Alfred only received (and rejected) one organ offer during the closure, as in previous weeks it had received up to eight offers," Mr Brouwer said in his report tabled to parliament on Wednesday.
He criticised the hospital for failing to conduct an independent costing review of its transplant program, despite promising to do so one year ago.
Lung transplants at The Alfred doubled from 2006-07 to 2010-11 as a result of the federal government's initiative to increase organ and tissue donations.
Clinical director Professor Trevor Williams said the program's staff and funding was based on the historical figure of between 40 and 45 lung transplants each year and the hospital was tracking to perform twice that in 2011-12.
AAP
Saturday, October 6, 2012
False Alarms
It's been nearly a year since my false alarm.
I was really sad to read this week that little Coen Ashton had a false alarm on Wednesday. His mum has written a blog post.
There are no words. I get butterflies in my stomach just reading it.
I was really sad to read this week that little Coen Ashton had a false alarm on Wednesday. His mum has written a blog post.
There are no words. I get butterflies in my stomach just reading it.
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