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

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

Read more: http://www.theage.com.au/victoria/alfred-hospital-turned-away-transplant-lungs-20121010-27cc4.html#ixzz28t7buUpx

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.

Tomorrow

I'm back off to the Alfred for Transplant Clinic tomorrow.

Things have remained fairly stable over the last twelve months until now. I've noticed a slight deterioration over the last couple of months, and the Physiotherapists at Pulmonary Rehab have noticed it too.

At rest, everything seems to be the same, but as soon as I do anything - even something as small as standing up, my oxygen sats start to drop faster than normal, and my heart rate starts to increase faster than normal.

After the walk section of pulmonary rehab, my sats are now around 72%, and my heart rate is around 130.

I've noticed the difference around the house too. I have to keep stopping and sitting down when I'm doing stuff, and I have to turn the oxygen up to have a shower comfortably.

I'm not quite sure what to think about it all yet. Sometimes it's better not to!

One Year Waiting

It's one year ago today that I officially joined the waiting list.

Not much to say about it, but needed to mark time.

A Week Of...

It's funny how things just become normalised when you have a chronic illness. You don't make a big fuss about any of it because doing the same thing day after day after day after day is just the routine.
There's no point whining and no point complaining because nothing is going to change.



But then thismorning there was a reason to step back and have a real look...

Selina has been playing along with A Week Of CF on instagram, and it's been really interesting to see from afar some of the things that she has to do every day. Things that are just routine to her, as my things are routine to me.

Todays subject matter was medications. I know I've spent a small fortune at the chemist over the last 23 years, but the challenge was to look at a weeks worth of meds.

So this is my week:

• 21 nebules of ventolin
• 21 nebules of atrovent
• 10.5 vials of acetylcysteine
• a plate full of pills

I was a bit freaked out when I looked at all those tablets on a plate, but what's even more freaky is that it also means that I spend about 21 hours on the nebuliser (which is thankfully right next to the computer). That's half a full time job each week. No wonder I never have enough time to do everything!

Rollercoaster

Do you ever have one of those weeks where you want to stop the rollercoaster and just get off for a while?

I'm in the midst of one. Another health scare over the last couple of days combined with tests and appointments four out of five days this coming week are tipping my scales.

Thank goodness I can rely on a bit of crafting to get through it, but I could seriously do with a break.

I'm so looking forward to the market tomorrow to bring back a bit of normality!

Oh, and after the good news from my appointment today I celebrated with a bit of Op Shopping. It's the perfect therapy.