Thursday, April 30, 2009

9 days in...

It's been a long 9 days, but to be honest- it's been completely God's strength and not mine. I can't believe the week has flown by and I'm still standing on two feet :)...Here's a little update.

After coming in last Monday I spent a whole week on the CF floor at USC. I was put on 3 antibiotics to help clear this infection out and one of them I had an allergy to (Imipenum). By Sunday night my allergy was heightened so much that my heart was in pain, my throat was swelling and I couldn't stop coughing as the itching and burning spread throughout my body. It was such a painful and frustrating experience that my doctor discontinued the med, and Monday had me put in the ICU yet again to try a new one (Cefepiem). I spent 24 hours in the ICU and was thankfully moved back here to the 6th floor where it is a much happier, quieter, friendlier place. Thanks be to God who seriously got me through that time!

Now, I am taking 5 different IV meds to treat not only the bacterial infection but also a fungal infection that has grown inside my lungs.  So, I am thankful to have meds that I am not reacting to and also meds that will be targeting the specific bugs in my lungs. It's been 9 days so far and I don't know when I get to go home, but I sure hope it's soon.

 I am willing to hang in there and really kick this infection, so I pray I can keep going and these meds kick in. That's all for now...time to get some much anticipated sleep.

Monday, April 27, 2009

Fuel TV

A week or so ago I posted about Fuel TV doing an interview of me for Pipeline to a Cure... Well, it aired today and will air again tomorrow on Fuel TV, 11:30 and 2:30 (california time). I'm still working on seeing if I can get an online clip, so far no luck, but if I do I'll post it. If not, and you get fuel tv, check it out tomorrow (tuesday, april 28th)! I, myself, will be watching it when I get out of the hospital- my fabulous parents taped it for me :)


My God is With Me

As i've been in the hospital, I've been reminded of God's faithfulness through some songs that we've sung in church lately. This song, by Matt Redman has been at the forefront of my mind, really bringing me comfort. God does not let us go no matter what we go through :)

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You

Friday, April 24, 2009

Hospital Time

I know, I know...I meant to post earlier this week, but I just didn't find the time nor energy to do so. I have been admitted into the hospital since Monday evening and it's been quite a busy week. I've been fighting an infection for about a month now and just haven't been able to kick it. So on Monday I visited my doctor for a check-up once again and my PFT numbers had dropped, I had a fever, and was so fatigued from being short of breath and coughing a ton that I was time for me to be admitted.

So, here I am. I have been getting excellent care from the nurses and docs here at USC. One of the biggest reasons I'm admitted and probably staying longer than I had thought is that I am on a drug that I am allergic to. Remember this post? Well, I am still allergic to Imipennum but as i turns out, it's one of the only meds that is successful in fighting the bacteria in my lungs. So I am stuck being on this med and suffering through the itching and burning sensation throughout my body each time it is infused through IV. Blech! I am taking drugs to counteract it, so far I am making it through.

I'll continue to post updates on here about how I'm doing and hopefully I can be headed home before the CF walk next weekend. It's been a challenging week, more on that later, but I know it was the right decision to come in and get my lungs back up to speed. I can't believe it's already friday!

Sunday, April 19, 2009

The Getty

I love Fridays!
Because we had the day off and wanted to do something fun, my friends Dannah, Jonathan and Mark and went on a Friday adventure to the Getty and then to Westwood for dinner! It was a beautiful day we could see over all the city and the ocean down by Santa Monica...what a wonderful way to spend a sunny day in So Cal. Good times and good friends!

Interview Update

It went great! I was interviewed for a show called "The Daily Habit" on Fuel TV and it will be aired next week, April 27th!
They asked me questions about CF and Pipeline to a Cure, coming up in just a few months- i'm getting excited! This was an awesome opportunity for Pipeline to get some press leading up to our event, Fuel TV is the channel for the action sports industry so many people who are into surfing will be watching :). Hopefully, they'll want to get involved in the event!

Overall, it was a fun experience- a real tv studio and a chance to share my heart for CF with people- can't wait to see it air. If they have it online next week, hopefully I can post it. If not, i'll post the date and time for anyone that has the channel to check it out!

Wednesday, April 15, 2009

Interview Tomorrow

Pipeline to a Cure 2009 is on it's way! And what better reminder than to be headed to an interview in the morning for Fuel TV, and tv channel for surfing, skating and other action sports. They are interviewing me about this year's Pipeline to a Cure and helping us get the word out about CF and this gala fundraiser. :)

I'd appreciate any prayers for me as I face brutal LA traffic in the early AM and also that I can share my life, story, and excitement for Pipeline. I'll let you know how it goes and give info about when it will air. It's a small tv station, so maybe it will be found online? Not sure, but i'll know more tomorrow!

Wednesday, April 8, 2009

Cystic Fibrosis Documentary Film

Thanks to my friend, Nate, who posted this on his blog- I thought i'd continue to spread the word about a new documentary film coming out about Cystic Fibrosis. It's about a girl named Eva, telling her story about living with Cystic FibrosisLink and the process of a lung transplant. The film hasn't been released yet, but I posted the link for the trailer below. Can't wait to see it, I am a fan of people's stories being told! Let's get the word out about CF and this awesome story.
Check out this link:



Sunday, April 5, 2009

New Research on the Horizon!

A few weeks ago, the CF Foundation announced some big steps in CF research!

The drug VX-809 ,has moved into Phase 2 Trials! They will begin testing this drug on CF patients to see how it works, as we speak. This drug is the first drug to actually correct the CF defect instead of just treat CF it's really promising! Click on the link above to read more about it.

I am stoked with this news! It's a real promising drug. Join me in praying the researchers continue to find good results as the go through the trials and that there are patients eligible to participate. Thanks to everyone who has supported CF, our hard work is paying off with some great studies being done :).