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Showing posts with label cayston. Show all posts
Showing posts with label cayston. Show all posts

sdhfkdsl;afsadlkfhjnaldfi as [THIS IS HOW I FEEEEL]

Posted on 1/06/2011 12:38:00 PM - by Carly Michelle In: , , , , , ,
5 weeks of IVs,
one ER visit,
5 days in the hospital,
up to 4 treatments a day,
and my PFTs are not improved.
fjkslldjcfndsyrp9c2489ryn9toesfdjn....

So, the plan now is, I'm getting a bronchoscopy done (they go into my lungs, get a good culture, and flush things out), CT scan, bloodwork, and chest X-ray. Also, I'm starting inhaled coly & cayston, and am replacing my advair discus with a new inhaler.
LETS DO THIS. 

LaLaLaaaaaa

Posted on 7/20/2010 08:47:00 PM - by Carly Michelle In: , , , , , , , , , , , , ,
Hey everyone :)
Sorry I've gone AWOL. I've been kind of busy, and when I had some down time I either wasn't in the mood to blog or I'd forget. SO, here I am. The last time I blogged was on July 6th, so I will try my best to include everything that's happened. Let's see...I have 2 weeks to make up for.

First, I want to acknowledge that I'm gaining more followers. Fourteen followers, yes, but it's better than nothing :D. Thanks to everyone who is spreading the word!

Secondly, I'll update on an ENT appointment I had. As some of you may remember, I was on levaquin for an infection about a month ago. In the midst of this infection, the sinus headaches that I have always dreaded started to return. I checked in with my ENT about it, and he told me to finish the levaquin, then get a CT scan and we'd go from there. I finished the levaquin shortly after, but went on vacation for 10 days. So, afterward, I got the CT scan and he checked them out and called us sayng he wanted to talk to us. Last time he had called us in to talk to us about a CT scan, he said, and I quote, "You needed sinus surgery 5 years ago". Because of that, we automatically assumed that this time I needed another surgery. NOPE! Turns out he just likes to talk face-to-face with people about their CT scans :). The scan showed some congestion, but he didn't want to default to unecessary surgery because there was air flowing through most of my sinus passages. Yay!

Thirdly, I want to talk about my last vacation: Santa Cruz! My mom's friend has CF and their family lives up in NorCal. For the past 2 years, we've met (almost) halfway in Santa Cruz for vacation :). They have two daughters, Annie and Jamie, who are the coolest people ever :). Some of you guys may remember when they came down and we all went to Knott's Berry Farm together. I love the Baker Family! <3

From left to right: Jamie, Hannah (my sister), Annie and me


Left to right: Tammy (their mom, w/ CF), Annie, my Mom, Hannah, Steve (their dad)

I went surfing on my own, with no instructors :)

Also, I started cayston! It's SO much easier than TOBI; yes, it's 3 times a day instead of 2, but those 3 treatments combined are shorter than one dose of TOBI. I love it. I haven't actually noticed a huge difference in the way I feel, but hopefully my PFT's will show it.

Finally, I want to make a quick tribute to the Mauli Ola Foundation. These guys are absolutely amazing. I can't even begin to express my gratitude toward what they do for me, my family, and the rest of the CF community. They are truly a blessing. If it weren't for them, I wouldn't be a surfer girl, and I wouldn't be as healthy as I am right now. SO, I love you all to death. Every one of you. Don't forget it! :)

To view the Mauli Ola Foundation site, click here, or click on the Mauli Ola logo on the right side of this page.

To donate to the Mauli Ola Foundation, click here.

To view my member profile on the Mauli Ola site, click here.

Thats pretty much all I have to update on. I feel like I'm totally blanking out on something that I wanted to tell you guys. If I remember, I can just re-update this post.
I hope you guys know how much I love you all!

Love,
Carly


An Abudance of Blogworthy Occurences

Posted on 7/06/2010 09:11:00 PM - by Carly Michelle In: , , , , , , , , ,
 [This was supposed to be posted several days ago, but I've been busy trying to upload photos and such. Sorry guys!]


I have plenty to share with all you SFTM [ShootForTheMoon] followers.


First, I want to acknowledge the Jones Family. In my last post, I disclosed the grave state of Conner Jones, a 7 year old boy who has cystic fibrosis and Prune Belly Syndrome. His whole life has been an enormous fight---PBS is a condition that basically means he has no abdominal muscles. Without abdominal muscles, Conner was unable to cough out any of the mucus in his lungs. Coughing out this mucus is crucial for people with CF, because it rids the lungs of a portion of the mucus and decreases the chances of infection. He passed away on June 25, 2010. Conner is the only person EVER to be diagnosed with both CF and PBS. I did not know the Jones' personally, but I was able to follow Conner's updates, diagnoses, conditions, and lifestyle via his mom, Sarah's, blog. I will post a link to it underneath, but a quick "viewer discretion" : GO GRAB A TISSUE BOX BEFORE READING.


http://notsobrightandshiny.blogspot.com


With that sad news, I shall move on to happier things.


So, as a few of you have noticed, I haven't posted any new posts on here in a couple days. That, my friends, is because I've been inhabiting a log cabin in northern Idaho with my dad, three siblings, grandparents and aunt, and have had no internet connection. Let me just say, that I know it's SUMMERTIME because I can't remember what day of the week it is right now. Each day has been going day-to-day-to-day with some new adventure, and its been awesome.


So a couple days ago (again, I can't remember any dates), we arrived to Idaho after a 12.5 hour drive. Excruciatingly long. My butt has never been so sore. 


That night, we explored the log cabin and all of its taxidermic wonders (believe me, there were a lot), then set off for Yellowstone the next day. We were only 20 or so minutes away from the Yellowstone entrance, so it was kind of a nifty location we were in. In those twenty minutes of driving, we drove through Idaho, Montana and Wyoming. Cool, right?


So for the next two days, we were exploring Yellowstone National Park. Like most of the tourists, we were busy snapping pics of steaming pools and exploding geysers, such as the well-known Old Faithful. In addition to YNP, we went shopping and I bought a pair of moccasins, while my sister, Hannah, bought a cowboy hat. Love 'em.
Old Faithful :)


Our third and last full day in the cabin, all of us (except for my grandparents), went on a horseback ride around Silver Lake, not too far from where we were staying. My horse's name was Desert Rat, or Rat for short. It was the most gorgeous hoseback ride I've ever been on. One minute we'd be walking through the forest, the next we were in the middle of a flower-filled meadow, then we'd be alongside the lake. It was amazing. The funnest part was when Hannah and I would slow our horsies down, then nudge them to make them gallop :).


CL + DR

That night, we had a crazy, crazy thunder storm. There was pink/red lightning that lit up the entire sky. If you want to check it out, I will have a video on my youtube channel sometime soon.


The next morning (this morning), we packed up our stuff and drove south about 5 or 6 hours to Salt Lake City, where we are currently staying. We will be here for just tonight, then we're driving a couple more hours tomorrow.

So yeah, that's my update on our vacation. I don't have much else to say...

OH, yes, I would like to thank Mike Squier real quick for letting me borrow the camera (see last post). I think the pictures I'll develop are going to turn out pretty good! (Let's hope so...)


lovelovelove.

ALSO, I received a text from my wonderful mother, Lori Lindmeier. Turns out, Cayston's been delivered to my house! Yay! :D

Also, I would like to ask a quick favor of all my readers. I want my blog to be "out-there". I want people to know about it. If you guys wouldn't mind, could you pass my URL around to people? Maybe a Facebook link, or an email, or something? I currently have 8 followers. I'm not complaining, I love my 8 followers :D. I just want to spread the word :).

I love all of you guys to pieces, even those of you I don't know. Nobody knows how happy I get inside when an unexpected person comes up to me and compliments me on my blog. It's VERY much appreciated!

Have a great rest of the week, lovelies <3.

Carly

Banana Diet, Stand Up Paddling & Double Appointments

Posted on 6/08/2010 09:41:00 PM - by Carly Michelle In: , , , , , , , , ,
So you're probably wondering what I mean by "the banana diet". My mom got a HUGE box of bananas from a friend. Seriously, I've never seen so many bananas before. It's kind of awesome! I love bananas. So, I'm going to be very potassiummy by the time that box is empty.

Banananananananananananananananas.

Also, last Sunday, I went stand up paddling with the CF Foundation Southern California chapter, who created the event to promote their surfing gala, Pipeline to a Cure, which is occuring in July. It was SO fun. Definitely doing it again in the future. The place we went to was at a bay, and was very close to the place my Dad's side of the family goes camping each year...how convinient :). While there, I got to reconnect with a bunch of people, which was another plus.

Anyways, I had TWO doctor's appointments today--a CF follow-up appointment for my sick appointment a couple weeks ago, and a sinus appointment to see whats up with these headaches.

My CF appt was better than the last one for a lot of reasons:

1. My PFT's are slightly up. Not drastically, but they are definitely in the right direction. I'm continuing Levaquin and breathing abx until my cycle for both is over (10 more days or so).

2. My sputum culture shows that I only have just 1 STRAIN OF PSEUDOMONAS. Wow. Last culture, I had 3. I'm really pumped, and eager to blast this bug out. If I can do that, I'll be PA free for the first time in YEARS. :D

3. Cayston is approved! Those w/out CF don't even KNOW how gross TOBI is...not to mention, how long it takes! Cayston will be replacing TOBI. Yay! I was on the Azli study (Cayston before it was approved), but got sick right afterward, so we all just assumed I was on the placebo. So, with that said, I don't actually know how the Cayston will work for me. I'm hoping and thinking it will be good, because its used with a different machine that makes the breathing treatments take less than 5 MINUTES. HALLELUJAH.

4. I got a lot of compliments for my compliance with CF today. Thanks everyone, but I must say, I would not be this way without my family, more especially, my mom. She is amazing, and pushes me to my limits. That, my friend, is a GOOD thing. Because of her, I am alive and healthy. Love you, Madre.


Okay, now for sinuses:

I told my ENT about my sinus symptoms, and he wants my lungs to be in better shape before he does anything...SO, once I finish my cycle of Levaquin, I'm getting a CT scan. I'll update you guys once that happens.

That's pretty much all I have to say for today. Love you all!

Carly

P.S. I just reread this post, and realized that anyone without cystic fibrosis would be very confused.

sputum culture= a "test" the lab does on mucus in my lungs to see what bacterias are growing in my lungs.

PFTs= stands for Pulmonary Function Test. It is a test done by me to see how good my lung function is. It's interpreted by calculating the percent of lung capacity I'm using based on what's expected. (Ex.: Today one of my PFTs were 87%. This means I am using 87% of what is expected of a 15 year old, 5'1", 120 lb. female's lungs).

Pseudomonas (PA)= a bacteria commonly found in my lungs, which causes lung infections like bronchitis

strains= Each strain is a different "species" of a bacteria (PA, in this case), which may or may not need to be treated with different antibiotics.

TOBI= a breathing treatment I take every other month. It is an antibiotic. I started my month-on, month-off cycle early to get rid of bacteria such as PA

Levaquin= an antibiotic in the form of a pill that I'm taking in addition to TOBI to get rid of bacteria such as PA
Cayston= a breathing treatment that would be replacing TOBI. It's used with an eFlow, versus my normal nebulizer, and reduces the treatment time from 20+ minutes to 5.

Hope this helps!

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