And repeatedly the tests are coming back normal. But I mean that's not a bad thing, I'm glad that my tests are coming back okay but it can be somewhat frustrating.

The next few tests are;

Autonomic test

Gi transit study for my entire gi tract just to see how bad it has gotten.

And a sweat test.

I was up early this morning to make the trek out to Clayton for a baseline sweat test, pre Kalydeco, at the Monash Medical Centre.

One thing I won’t miss about mornings, early or otherwise, is the first cough of the day!

I’ll explain it as best I can, both for you and for me to look back on, hopefully, and realise what I’m NOT missing.

The best way to describe it is: Think of an old car trying to kick over first thing on a cold morning.

It’s usually after I have a shower, drying myself makes me a bit out of breath then my chest gets a bit tight, I know it’s coming but more often than not, the actual coughing fit comes a bit from nowhere, but it goes like this:

*Cough, cough, cough, cough, cough, cough* Take a breath. *Cough, cough, cough, cough, cough* Try to take a deep breath but only get half way. *Cough, cough, cough, cough, cough* Take a breath.

By this stage your eyes are watering and your head feels like it’s about to explode, your stomach muscles are sore and feel like they could cramp at any second.

There’s a few more dry coughs before you get a bit of moisture in there (think: oil getting around an old engine ready for it to get going). By now I’ve usually got enough control to slow my breathing down a bit and stop the coughing fit. But there are always two or three more coughs and on some days there's some dry retching, then a bit of mucus will come up and it's like the engine has started, ready for the day ahead! It doesn’t take long to recover, but it’s a pretty full on experience.

This happens every morning, the only exception being for the first few days (used to be weeks) after a hospital admission.

Anyway, back to today’s sweat test – The last time I had one done I was about 6 months old, it was how I was diagnosed with CF. Obviously I don’t remember it so I wasn’t sure what to expect when I sat down and saw what looked like a chemistry set with a battery charger tacked on to one side.

First off they clean your arm with some super strong alcohol to get rid of any bugs, etc. that might be hanging around. They then put two square cotton patches in place on the inside of your arm, roughly 10cm apart, before soaking those with a special chemical that reacts when an electric current runs through it.

Next comes the fun bit: they attach two electrodes to your arm and turn the machine on, slowly increasing the amount of electricity being pumped in to your body until all your hair is standing on end, you start to shake and feel like you’re about to lift off the chair…. Not really.

It does feels like there are about 100 ants with sharp claws under each of the cotton patches, though. They need to keep these wet with the chemical (not sure of the name) and each time they drip a bit more in it gets a bit more uncomfortable.

That’s done for about 10 minutes, which is long enough to stimulate the sweat glands sufficiently for the test to begin.

The test is really simple and painless, all they do is put a ‘weighed and dried’ piece of gauze where one of the cotton patches was, just above the wrist, cover it with a thin, clear plastic and tape it down. Then bandage it up and leave it for 45 minutes.

They told me I could do whatever I liked for that 45 minutes, so I went to the car and tried to have a sleep! That was no good though so I read the free paper I got with my Bacon and Egg McMuffin breakfast on the way, just one of the many benefits of an hour and a half drive in peak hour!

Once the 45 minutes is up, the bandage, tape and plastic comes off and the gauze is placed in a sterile container and sent off to the lab for testing. The testing includes weighing the gauze and measuring the amount of sodium and chloride expressed throughout the test. I should know the results by Thursday or Friday.

When I was called back in to the room to finalise the test, I was introduced to the head of the ‘sweat test’ department who was pretty excited to meet me. He said something along the lines of “we’ve been doing these tests for 30 years and this is the first time we’ve seen the sorts of results Kalydeco is producing” and that “this is certainly a new frontier and a very exciting time”.

I may have covered this previously, but apparently I’m only the 4th or 5th person on Kalydeco through the Monash and possibly the first male patient. As the doc said, exciting times.

We had a slight hope that today could have been the day I actually received Kalydeco, but there has been no call yet. I tried calling the CF department before I left the hospital but no one answered the phone. (They have a pretty strict cross-infection policy so I didn’t actually go up there to see if I could speak to anyone, I figured they’d ring if they had any news)

So that’s one side of what’s happening this week. The other side is transplant talks.

I’ve got an appointment with the transplant team at the Alfred on Thursday afternoon. I haven’t made a decision yet on what I’ll do if they tell me I need a transplant, hopefully Kalydeco will be doing its thing while I’m thinking about it all and I’ll be able to put it off for a while. Who knows how long for!