The Triple Triple

Woop Woop!!!

I am 33 aka the Triple Triple, you know me ever year there has to be a theme!

I had a blast celebrating with friends and family. My friends surprised me with the cutest Madonna themed cake and it was so yummy too. We have some friends that are very talented when it comes to cake making skills click here and you can see some of their creations.

Here are a couple pics from my bday weekend...

We are getting SO close!!!

Phase 2 Study of Kalydeco and VX-809 in Combination Shows Promising Interim Results

May 7, 2012

Vertex Pharmaceuticals Inc. today announced promising interim results from a Phase 2 clinical trial of its cystic fibrosis drug Kalydeco™ and VX-809, a CF drug in development.

The results showed a significant improvement in lung function in people with two copies of the most common CF mutation who received the two drugs in combination. Both Kalydeco and VX-809 are designed to treat the underlying cause of CF. Complete results from the Phase 2 trial are expected this summer.

The ongoing Phase 2 study enrolled 108 people, ages 18 and older, who have one or two copies of the Delta F508 mutation. Today’s results are based on data from about half of the study participants after they had completed 56 days of treatment.

Vertex plans to begin a pivotal trial of Kalydeco and VX-809 in people with two copies of the Delta F508 mutation, pending final study results. Pivotal trials are typically designed to gather data that could be used by the U.S. Food and Drug Administration (FDA) to decide whether or not to approve a potential drug.

"We are eagerly awaiting the full results, and are pleased that Vertex is accelerating its plans for a pivotal study of the combination treatment in those with two copies of Delta F508," said Robert J. Beall, Ph.D., president and CEO of the CF Foundation.

The CF Foundation played a key role in the development of Kalydeco and VX-809, providing significant scientific, clinical and financial support.

About 50 percent of people with CF in the United States have two copies of the Delta F508 mutation. About 40 percent of people with CF in the United States have one copy.

Earlier this year, the FDA approved Kalydeco for people with the G551D mutation ages 6 and older. Kalydeco is the first drug that treats the underlying cause of CF — a defective gene and its protein product, known as CFTR.

Be Aware!

May is Cystic Fibrosis Awareness Month....

Here is a  cute video I thought I would share that does a good job explaining CF... Enjoy!

An Amazing story... Tune in or set your DVR's

65_RedRoses is a documentary that takes an unflinching look into the life of Eva Markvoort as she battles a fatal genetic disease called Cystic Fibrosis. At 23, Eva needs a double lung transplant to live. The film follows her journey to transplant while seeking support from her two online friends Kina and Meg who also have CF.

65_RedRoses premieres Thursday, May 3rd at 9/8c only on OWN.

http://www.oprah.com/own-doc-club/65RedRoses-Trailer
Read more: http://www.oprah.com/own-doc-club/65RedRoses-Trailer#ixzz1tZKpXv7M

A Lil Spring Cleaning

Holy Cow I can't believe it's been over a month since I have posted on here. Can you say Slacker!!! Sorry Blog Land!

Well after a great run (17 months) I was admitted into the joint, the theme was "SPRING".

As you can remember I am thippless so it definitely made this stay a lil interesting. Let's just say at the end of the 2 weeks I was missing my Thipple (portacath). I thought maybe just maybe my arm veins would of had a chance to heal on their nice 7 year break of no piccs. I was banking on just getting a Picc, but no such luck.  My veins are horrible and I am not quite ready yet to get something permanent again. So I felt like I was 8 again as I went with peripheral IV's the whole time. Total stay 5 pokes and 4 IV's total, not to bad!

IV #1

The Fam came up Riv and Makena had a blast on my bed going up and down, They loved the large elevator and the revolving door too. It was better than Disneyland I think they said ;)

I was quite colorful after this stay 

My mom playing Draw Something

My IV bag that goes everywhere with me connected to it 24/7 my fancy arm bracelet and my lil reminder that Astra was watching out for me. Between her and Tiff I was taken care of I was in the last room Tiff was in Im sure she planned that. I am glad she didn't pull any funny Business... considering I was there for April Fool's ;)

My bam bam doo! I pretty much wore my hair like this every day... lookin good ;)

Had Madonna's new album on repeat the entire time.... Love it!

GNO joint style! SO MUCH FUN!!! Cards Sushi and GREAT company! 

SPRING theme!!! Loved this theme Good job Momma

blowing smoke rings! Its a true talent ;)

The day I got home left Fake spring to Real Spring! 

Its amazing how you can do nothing for 2 weeks but yet you get home you are so exhausted. This  makes the transition from joint life to real life a bit overwhelming. Hopefully I can go another 17 months or so before I have to do it again.

Thank you everyone that made this stay a great one.... my fabulous Docs, my amazing nurses, The best  family and friends EVER you guys are ALL AMAZING!!! Thank you! Xo

Can't believe she is 7

Happy Birthday Lilly!!!!

Seems like just yesterday she was a lil puppy... Both my babies are 7 now until Osc turns 8 June 3rd... My lil Irish twins ;) 

Lilly is still snug as a pug in bed she loves sleeping in, she is so funny and makes me laugh all the time. The quote "The pug is proof that God has a sense of humor" is so true! Happy Birthday Lilly! Xo

CF Awareness

There seems to be a lot of CF awareness in the media these days which is SO exciting!

Last night there was an amazing documentary on TLC called Breathless Bride. For those of you that missed it you can watch it on you tube. It's titled "Love on the transplant lis"t on you tube. It is a documentary of the cutest girl Kirstie with the most amazing accent... I love accents! It follows her as she plans her wedding while she waits on the transplant list.