Update on Denise

For those of you praying, here is a little update I've received today through a friend...Praise God, all has gone extremely well. Denise went into surgery yesterday at 4pm and finished just after midnight. By today at 3pm (less than 24 hours post-surgery!!) she was breathing on her own without any tubes, and by 7pm tonight she was awake and eating some Jell-O :)!! She is still in the ICU but everything is going great.

What an incredible miracle and also a mind blowing thought...to think that just over 24 hours ago she was breathing with her lungs and now she is breathing with someone else's lungs??! I mean, wow. I know she's got a huge road of recovery to go, this is just one step of the mile long process. But, she is doing very well and to be awake and breathing without support is an amazing feat. Please keep her in your prayers and I'll make sure I keep updating. Thank you friends and CF Community. I know she would be blessed to know she is being lifted up by so many.

~Em

Praying for Denise

Right now, an old friend from my CF Camp days (back when we used to be able to go to camp) is getting a lung transplant! What an incredible miracle, a huge life change and a huge blessing. It's a huge surgery and huge recovery. Her name is Denise, and I ask you to join me in praying right now. Surgery is scheduled for 2pm at USC University Hospital.

If I could scan and upload an old photo of us, I would. But right now, please keep her in your prayers...

Thanks, friends.

~Em

So glad to be home

That's right...I am officially out of the hospital and home in my own house, sleeping in my own bed and eating homemade food! It's such an amazing feeling! I was discharged Saturday and after a discussion with my doctor we decided I would do another 7 days of IV meds just to make sure my body has fully kicked the infection in my lungs. I have two IV and one oral antibiotic that I'll continue for another week.

Because I spent the first 10 days or so of being sick fighting off the flu, my body still has some catching up to do to help fight this infection in my lungs. My lungs still aren't back to normal- my breathing still gets a little short and I'm getting tons of mucus out (which is a big sign that my lungs still aren't in the clear). Thankfully my flu IS gone (with sadly, the exception of my appetite's absence).  So, with another 7 days of IV meds plus home-cooked food some gradual exercise and my own bed, I'm hoping to be back up on my feet and rearing to go in my normal life very soon. 

I had no idea how much this swine flu took out of me I got until today, spending my first full day at home, all I wanted to do was sleep! I find that many times after I leave the hospital- though I am supposed to be resting, the hospital is not exactly the best environment for that. I am constantly interrupted, walked in on by doctors, nurses, interns, maintenance workers, you name it (if only they'd allow us to lock our doors....hmm...guess that would defeat the purpose of people taking care of you ;). Anyways, when I got to take a nap today without anybody walking in my room it was a beautiful feeling! 

This week, I plan on doing my very best to re-gain my strength and stamina and fully recover. And I am extremely glad to be doing it from home :). As I reflect tonight before doing my next dose of medication, I am so thankful for the incredible USC staff of docs and nurses who really took care of me and helped nurse me back from the pit of the swine flu. It was a huge blessing to have people managing my health care for me when I didn't have the energy or strength to do it. I am so thankful for the care I received the last 14 days and thankful to be home to finish up the healing process.

~Em

Sweet poster

Just a little fun for today :)

This poster was up in the elevators at USC....gotta love the Trojan man stomping in victory on the little germ sticking his tongue out! Way to fight on, Trojans!

Go USC :)

~Em

Fridays and Saturdays

Friday and Saturday nights are the hardest times for me in the hospital. Whew. Now that I got that off my chest! But seriously, they are the hardest times because it's when I would normally be out with friends enjoying my weekend and knowing that everyone else is doing just that makes it hard. Sometimes I forget while I'm here that life goes on outside of the hospital- people still have jobs, hang out with friends and live normal lives. For me, as life comes to a halt, I battle feeling discouraged, frustrated and alone.  I find that the little things keep me going and God provides exactly what I need at exactly the right time and sometimes in the midst of discouragement all I have left is to trust that God knows what he's doing- knows why I'm here and what He's doing inside my heart as I am painfully growing and learning in the midst of a life in the hospital. Even when I don't understand, I know that God knows.

As I write this post (at 7:35pm, Saturday night) the Lord provided encouragement at exactly the right moment, I'm not kidding. In fact, I wasn't planning on putting this in my post- I thought it would be a post full of lamenting and frustration. But right now, as I look out my window here on the 6th floor, a medical helicopter is landing right above me bringing (most likely) life-saving organs to this hospital to save someone's life.  Oh the hope it brings. As the windows shake from the helicopter above, I am reminded that God is in control, God works miracles, God brings life and God takes life. This hospital is full of miracles, they perform life-saving surgeries and transplants here and as I watch this helicopter land I can't help but thank the Lord for his timing and for saving someone's life with a miracle. I feel a sense of trust that God is bringing life to someone and a sense of grief that someone's life had to end for this to happen. And I feel a sense of joy to be able to witness it (well at least the helicopter delivery part). What a gift of hope....a gift of life for someone....a gift of hope to remind me that God is always working and is my source of hope. I can't help but smile knowing what a miracle is taking place and knowing it's all in God's hands and knowing I'm in His hands too.

...Thank you Lord for bringing exactly what I needed on this Saturday night....

~Em

Oink Oink..swine flu it is!

That's right, just got the results from my H1N1 test that I took when I was admitted on Sunday. I officially have the swine flu which explains a lot of why I wasn't able to fight this off on my own! It explains why the flu attacked my CF as well and my body wasn't able to fight it off. I got an infection in my lungs so rapidly and so severely that I guess thats what happens when H1N1 interacts with CF.

 There's not much they can do now since I've had it for over a week, but mostly I'll just stay put in the hospital until I'm feeling better and the virus is mostly out of my system :). Glad to know the official results, just thought I'd share. Other than that, not much has changed- I am doing IV meds, doing my treatments, resting a ton and staying put. I still don't have much of an appetite, but I'm slowly eating and keeping things in my stomach, I'm gradually getting better :). Please continue to keep me in your prayers, I am so thankful to be getting good care here at USC!

~Em

The flu caught me...

I did my best to avoid this gnarly flu with hand sanitizer and crazy avoidance of sick people but alas, it caught up with me and last Thursday it hit me hard! I woke up that morning with a terrible cough and sinus headache and by that evening was burning up with a fever, chills and it only got worse from there :(. I fought hard all weekend (thanks to my mom who really took amazing care of me- homemade soup, making sure I drank water so I didn't get dehydrated, and helping me get through the terrible-ness that is the flu). My mom's a rockstar...

After fighting over the weekend by Sunday night it was clear that the flu had made its move into my lungs and I knew that an infection had kicked in. I wasn't able to sleep from coughing so much mucus out of my lungs and when I woke up with another high fever that morning I knew it was time to call my doc and get some help. I was admitted Sunday night and though I was reluctant to make the call, I thank the Lord for wisdom as when I got here my oxygen levels were way too low (I had too much stuff in my lungs to allow me to get enough O2). I knew once I saw those numbers that it was good for me to be here and I feel very peaceful knowing i'm in good hands. My fevers have gone away and now that I have some extra oxygen I am breathing better and making progress. I'm on IV antibiotics and working on getting rid of this gnarly lung infection....

Just wanted to update my blog readers, I'll keep posting to update but as of now, day 4 in the hospital, I am much more aware of what's going on. The first few days because I was so deprived of O2 I really don't remember or feel like I even comprehended that I was here. Now that I sit in my quiet room and reflect, I am overwhelmed with thankfulness to God for prompting me to be here. I don't know how to explain my thoughts right now with the exception of gratitude and peace. I feel peaceful that I am being taken care of and thankful God provides. 

More updates soon...

~Em

Hanging with my USC Team!

Back in May, the USC docs and CF team did a Great Strides walk for Cystic Fibrosis at the Rose Bowl in California! Check out some fun pics below, we were sporting the cardinal and gold, of course :)

~Em

Kim and I getting ready to walk...
My friend Aaron and I hanging out before the walk starts...sweet USC shirts :)
The group walking and celebrating that we had finished!

Home is where my comfortable bed is

That's right, I'm HOME!!! After 3 weeks exactly, I was finally released from the hospital and arrived home Monday afternoon :). It is such a surreal feeling to all of a sudden be done with the 

'hospital life'. Nobody is telling me what time to eat, or walking in my room in the middle of a nap, taking me order for dinner, taking my blood at odd hours of the night or asking me to get on a scale while I've visiting with friends! It's like I no longer am focused solely on my body but I have the freedom now to decide what to focus on, it's kinda overwhelming yet wonderful!

Monday, I arrived home and ate some lovely homemade tacos made by my sister, took a long shower (in my own shower!!) and ended up napping for a good 2+ hours...it felt great! I slept in my quiet room with the birds chirping outside (not machines beeping in the hallway)!!

Thank you, Lord, that I am home. I am overly thankful for the incredible care I received in the hospital, for my doctor who genuinely cares about me, and for the many people who sacrificed their time, gas money, and energy to come keep me company and bless me with their encouraging hugs and smiles. As that long 3 weeks comes to a close and I begin to regain my stamina and adjust back to life, I am just very thankful :)

~Em

~Em

Almost 3 weeks!

That's right, this is the longest I've been in the hospital since my senior year in high school...geez. Here's a little update on how things have been going. First off, I've been blessed with great care. as much as I don't enjoy staying, I am thankful for the care and love I've received from my CF Team and nurses here on the floor. Thanks, USC!

It looks like I should be going home on Monday, which will make it a total of 21 days here...wow! I can't believe I've been here so long, i guess I've sort-of gotten used to the routine and just the way things run. However, going home to eat home-cooked food and sleeping in my own bed will feel glorious. I've had to stay a few extra days because unfortunately, my insurance company would not authorize me to go home on 4 IV antibiotics. Even though I've been doing home IVs since I was young, doing 4, plus me having a previous allergy in my course of meds here posed to be a liability and they'd have to send a nurse. Sending a nurse plus liability for the insurance meant that if I needed to continue IV treatment it would have to be here at the hospital...so here I remian.

I had hopes of going home last week but had to take the blow and stay here a few more days to allow my meds to kick in and finish out this course of treatment. The good thing is, when I get home, I'll be officially done and glad to have a break from all this- no home IV treatments to continue :). As I endure the last few days, I ask for your prayers for my patience, for stength to keep going and keep fighting, and prayers for my lungs (and lung function) to bounce back up to baseline allowing me to breathe well and get back to my active life! 

Thanks, friends, for continuing to be with me in this journey, for continuing to support me as this has been a LONG 3 weeks, and for your encouragement and love- it has come at exactly the right times :)

~Em 

Random Musings from USC...

I've grown accustomed to (the good, the bad and the ugly of life here at USC)...

-The sound of helicopters landing on the roof in the middle of the night, and praying for the patients who are receiving organ donations!

-Distinguishing my doctor's voice and laugh through a closed door while he puts on an isolation gown

-Sleeping through beeping, the testing of fire alarms and people taking the trash out at 3am

-Eating my food on a tray

-Directing the blood 'vampires' as I call them as to which vein they should poke next :)

-The blessings of friends and family taking time out of their day to email, text, or stop by to visit.

-Wearing sweat pants and a sports bra...holler!

-Incredible nurses coming in with a smile to cheer me up

-Answering the question "did you go to the bathroom" and giving details each day, haha

-Playing the 'order my food' game which consists of: giving my order for breakfast, lunch and dinner by choosing whatever sounds good AND whatever looks good here...tricky!

-Peeing many times in the middle of the night because I've got bags of IV meds dripping in me!

-The days going SO fast and then wondering what the heck I did (thanks, God for giving me patience)

-The lovely view of the park and homes up on the hills of LA

-The purring sound of my IV pump as I sleep which thankfully drones out the busy-ness in the hallway outside

Just a few  little observations I've made during my stay here to let you guys into my 'world'...!

Happy Friday!

~Em

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.

~Em

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 knew...it 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!
~Em

The Best Mac-n-Cheese Ever

That's right people, if there's one thing you need to know about me...I love food. Good food :).
I want to give a little shout-out to my mom for making the best Macaroni and Cheese that I've ever tasted (and yes, it's so good and i'm such a food geek that I took a picture!).
Today was a long day- I spent 14 hours in a hospital room at USC participating in a clinical trial for Cystic Fibrosis. I signed up for this study knowing that the first day was the longest- I took the drug and then they took blood samples throughout the day so I hung out, watched some DVDs (big thanks and hugs to Kim who graciously kept me company!), and was a guinea-pig for this new drug that could possibly help aid inflammation in the lungs. I'm saying a little prayer that this study produces good results thus helping CF patients worldwide :).

...AND after a long day at USC eating hospital food, I was SO glad to come home and eat some fabulous macaroni, it was such a treat...
~Em