I am going to make this one short.

Last week I watched videos from the 2012 CF Conference that took place in Florida this last October.

I remembered my CF team seemed enthused when they returned from the conference – so I thought I’d watched.

Two videos/pictures created clarity as well as rejuvenation – to somewhat of a degree.

This picture shows the results of the new medication to treat my mutation, Fdelta508; and the results are pretty amazing. On the upper right graph, where the yellow line stops at 10%, that is the placebo group. Then, the blue line right next to it, that’s the group that took the medication, their lung scores increased by 10%. That is a huge margin. And some patients saw more than a 10% improvement in their lung scores. You can click on the picture to make it bigger.

Now, taking that information – this drug is life-changing, a game-changer.

I want that drug.

I hope, 3-things, it does get passed through the FDA; ALL likelihood it will this year. It is an improvement, a medication treating, altering CF at its’ root.

2. Insurance. The medication out on the market now is treating 4% of the population. My question is: is the 4% of the population actually receiving the medication? Side-effects aside – were they able to get it by means of insurance or other routes.

3. Side-effects. It is supposed to have low side-effects, but everyone is different.

4. I didn’t even know I had a fourth: will it work for me? On all accounts, since it is designed for my mutation and I have two Fdelta508’s – it should.

These are All big challenges.

I took a video on how a healthy person’s lungs work to sweep out bacteria, to have plenty of hydration to do so, to have cilia, cells that work. But, the video won’t load on this website.

Basically the picture looks like this:

A healthy person’s lungs are moving along 15-20 miles an hour. Moving, passing along, getting things done. Slowly – but our bodies don’t need to be going 50 miles/hour.

People with Fdelta508 – next to nothing. We are the car on the side of the road that you see changing their tire. We pitter-putter along, with a broken, loud muffler, and we give it our best effort. We are moving, eventually, but working much harder and along the way, we may lose a small piece of our car on the road as we drive as well.

I want help. I want to be moving, not stopping picking up some crap on the side of the street, hearing some clangs from dropping my tools. Move-it people! Move-it! Get that shit out of my lungs.

That is what the medication will do. It will repair our cells into working condition to make an effort, a better effort. We may still have the older model, because we can’t actually trade in for a new one, but hey we are moving.

I want that drug.

So – I look at that graph. And maybe I won’t see a 10% increase, but to stop, slow down, start giving my lungs time to repair normally, to slow down the disease process that would be amazing.

I keep staring, and wanting. And if this drug doesn’t work for any of the reasons I listed – Pfizer and the Cystic Fibrosis Foundation sealed a deal for $58 million for drug discovery in the last couple months. While already Genzyme is working with the CF Foundation as of November 2011.

We are gaining momentum. That means my goals have to as well.

I am going to have a conversation with my doctor about my PFT device. I emailed my nurse this last week. They want to talk about it. I rescheduled my appointment for January. I have to get down with my job training first.

The idea of going still makes me want to puke. I mentioned in my email about getting anxiety – thus I think they want to talk about that as well. That just makes me want to punch something (an imaginary object) – but still punch something.

At least – they never say, “We understand; or I know.” I hate when people say those words relative to someone’s illness or struggle. I think they are smart people, so they don’t.

I still want my device. It would alleviate MUCH of my anxiety.

I have to keep moving forward; knocking out annoyances along the way. Slam the door on moments and thoughts that hinder my positivity.

I also, need to find healthy ways to get beyond this PFT resistance. Only doing it more, closer together, I feel will make it much less of a mystery, a mountainous burden in my life. If I worked in the clinic, I would do it weekly. The more you do it – the less fear you have. I want to put this issue aside; sooner the better.