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.

How do they choose?

I've been meaning to blog about this for a while now, as the most common question I get asked is "where are you on the list?"



The list is really just a list. There's not really an order. I have six weekly reviews where they check for deterioration etc.

The full TSANZ Protocol is here, but this is a quick summary from the site:


Donor lungs will be allocated considering the following criteria: 


1. ABO compatibility (blood group)
2. Size compatibility                 
3. The absence of a positive T cell crossmatch

Where more than one potential recipient meets the above criteria the first choice will be determined by the following process:

4. Clinical urgency*
    Logistics**                          
    Long-term outcome benefit***
5.  Recipient waiting time, all other factors being equal

A Gracious Gift

Via You Tube


From Nine MSN News

A young Sydney man in desperate need of a heart and double lung transplant has made a heartfelt video, urging viewers to become organ donors. 

William Chapman, 20, was born with a congenital heart condition but his health has recently deteriorated to the point where he fears he won't be around for long. 

"I am living with heart and lung failure," Mr Chapman says in the video.

"Without a heart and double lung transplant I won't make Christmas." 

He urges viewers to think of their parents or the people they love most as they watch the video he helped make in a bid to lift Australia's rate of organ donation. 

"I want Christmas with my family. Not flowers in my face or grievers at my funeral," he says.

The seven-minute clip, uploaded to YouTube yesterday, features Mr Chapman's family as well as a number of celebrities who echo the call to save the young man's life. 

Mr Chapman worked at a media communications company before his failing organs forced him to quit and return to the family home where he could receive 24 hour care.

Nearly a year

Gosh whodathunkit?

I had to go in to the Alfred for my normal 6 weekly check up today, and it turns out that it's been nearly a year since I had all of the original inpatient testing.

So, as the surgeons need to have up to date results on file, I have to go and repeat the yucky glucose/insulin blood test locally, and have another Chest CT when I go back in 6 weeks (unless they call me sooner). It's funny, at the end of every conversation where something is being organised, they always throw that last line into the conversation. It's every so slightly unnerving!