Monday, May 30, 2011

That's a heavy word you've got!

A few weeks ago when kyle's family was down for graduation we all sat together and waited for over an hour for the kids to finally file in. While we were waiting his mother and I were chatting, or rather she was chatting I was more listening. She soooo wonderfully let me know that a Canadian 16 year old has cured CF and they're going to start human testing! Well, now, isn't that just peachy keen! (Can you sense the rolling of eyes here??)

Now, his mom is sort of an eccentric woman who means all the best, whom I do love to pieces, but sometimes she gets me. This was clearly one of those times. Cure, eh? That's a heavy word you've got there Momma O. Of course I politely 'oh! I haven't heard this, tell me more..." and in my head I was rolling my eyes.

Sitting here in the hospital with nothing else to do and at a bordem peak I looked up said 'boy' and said 'cure.' The take I get on all the vague info I could find is that he experimented with something very similar to vx 770 and vx809 both which help correct the flow of the chloride channels. He only had one experiment in living cells in a culture... his results were quite impressive in that the fact that his two combinations of drugs worked together so that the cell functioned normally.

Wait a minute, isn't that essentially what the new vertex drugs are doing? This is not a cure, it's a treatment. A damn good one, but a treatment nonetheless. It's a shame that the media failed the general public when they decided to use the word 'cure' in their featured stories. I'm disappointed that they underestimated the heaviness of the word and tossed it around like no big deal.

The boy who did all this discovery, is absolutely amazing. I really liked a lot of his interviews, he stressed that the importance of his research is NOT the drugs, but rather the groundwork that he laid for these specific molecule structures. There's someone who understands the realistic seriousness of the matter. And he's only 16! Never once did he say 'cure.'

It's annoying to see false statements of celebrities, disappointing to see embellished, over the top stories, but its downright criminal to break hearts and spread lies! So my advice to all you media folk out there; "cure" is a heavy word --use with caution.

Sunday, May 29, 2011

Room 142

At 5:00 pm EST the Carnival Glory set sail to the bahamas. I've never been on a cruise before, this cruise is my first. Only, I didn't quite make it aboard. Instead I'm now hooked up to an IV pole because my body decided it was the perfect opportunity for my first ever case of hemoptysis at 3 am morning before my first ever cruise. Did I mention this cruise was a gift?

To say I am bummed is an understatement. I am bitter and filled with regret. As soon as that fateful mouthful of red, frothy, liquid poured from my teeth I immediately was trying to talk it down. When I hadn't heard back from the pulmonoligist on call for over an hour an a half I successful convinced myself it was no biggie. People bleed all the time.

But then he called, and said to come in. Come in come in. Like, sit here for a couple weeks while everyone is in the bahamas so you're alone by yourself come in.

I put my health first and I hate myself for it. I'd much rather be sick and sailing than be healthy and lonely. I'm on such a weird emotional roller coaster right now. I'll understand eventually I did make the right decision, but it doesn't help it suck any less.

I've taken 4 steps forward and now 3 and a half back. Does it ever get easier?