Karen's Lung Function Climb (49% to over 100%)!!

Guest post by Karen Vega

I want to start out by thanking Ronnie for inviting me share my story by guest posting on his blog. My name is Karen, I’m 29 years old and have 1 ½ year old twin boys. I’ve shocked quite a few people, myself and doctors included on my drastic increase (75% increase in volume) in PFT’s over the past 10 months. Here’s a quick background on me and what brought about the change.

Up until college I always had “mild” CF. I’ll admit that I wasn’t the best at being compliant with my therapies during high school, college and even beyond. I just wanted to live “normal” and CF was easy for me to ignore at that time in my life. It wasn’t until late in college that I felt my CF slowly progressing and I needed IV’s for the first time. After I graduated and entered the workforce I wound up on IV’s every 6-8 months. My PFT’s were decreasing and I just accepted that this was the progression of the disease. When my husband and I decided it was time to start a family I talked with my doctors who gave me the o.k., had a tune up and at that time was holding steady with a FVC 3.67L (88%) and FEV1 - 2.54L (72%). To everyone’s shock & surprise I found out I was having twins (although they are in the family I just never thought about it), which scared a lot of people, my doctors mostly, but overall I had a pretty normal / easy pregnancy. I did wind up with an exacerbation at the end of my pregnancy and as soon as the boys were born I was on IV’s again.

I had a really rough first few months with them at home. Besides the normal new mom of two tiredness, I had the flu, kidney stones and laryngitis all in an 8 month period. My PFT’s plummeted to an all time low FVC 2.50L (64%) and FEV1 1.56L 49%. This really scared me and I knew something (me) had to change drastically. I had to find the energy and time to really commit to bringing those numbers back up. I knew I had to start exercising my lungs. I started slow, swimming 2-3 times a week. It took me about a month or two to get back into enough shape to even swim ¼ mile without getting winded. Then I started light jogging and 4 months into it I was up to a mile of jogging and ½ mile in the pool. After another round of IV’s last December (and let me add a PICC and two 1 year olds does not mix) I was starting to feel much more energized. I saw a post from Jerry Cahill about joining Team Boomer for this year’s ING NYC Marathon and I impulsively signed up. This was the kick in the butt that I needed.

I’ve been training for the Marathon since April, 5 months now. I’m up to running 28-30 miles a week with my longest run so far of 13 miles. I don’t run straight though, I take walking breaks usually every 2.5 miles or when I feel I need to. It’s not the speed that matters to me, it’s the distance and endurance. I never, ever thought I would be doing this a year ago.

Three weeks ago I had a clinic appointment and my PFT’s were FVC 5.36L (129%) and FEV1 3.71L (106%)! I couldn’t believe it. I still can’t believe it. I haven’t been in the 100%’s since as far back as I can remember. My doctor said she’s never seen results like this and that I must have a tremendous lung reserve. I haven’t changed any medications and haven’t been on antibiotics since December. The only thing that changed was me starting to run, run a lot.

Exercising was always something I had an excuse not to do. But after actually seeing my results I don’t have anymore excuses. Now I’m not saying everyone should go out and run a marathon nor do I think my results are typical. But I do think that everyone, CFers especially, would benefit from any type of physical exercise to the lungs. No matter how slow or how many breaks you need there is such a sense of accomplishment at the end.

I recently started a blog mostly about my training but about my life in general. Check it out the post I’ll be writing on Sunday 9/12 after I finish a 15 mile run! And make sure to check back after Nov 7^th… after I complete the marathon!

http://www.doublethelovehalfthesleep.blogspot.com/

And if you are able, please check out my First Giving Page for the NYC Marathon. http://www.firstgiving.com/karenvega

Thank you all for taking the time to read my story. Wish me luck on Nov 7th!

Note from Ronnie: I just wanted to give a big thank you to Karen for writing an outstanding guest post for RSBR. Her story reminds me a lot of my own. She is a great example of a CFer who decided that "enough was enough" and to take CF head-on. She has shown that although it may take some changes, through a little bit of hard work and dedication, we CAN have some control over this disease. I encourage you to leave Karen your encouraging comments as well as any questions you may have!

If you are interested in writing a guest post for RSBR, simply send me an email with a little bit about yourself and what you'd like to write about.

What's in a Yahoo!? WHY DID

I started something a while ago on RSBR called "What's in a Google?". It's simple really; type one word into Google and see what the magic bot suggests for you. Once in a while, you can get some pretty funny suggestions. Today, I figured why limit it to only Google. I now present "What's in a Yahoo!?". Pretty sure you guys can figure out the gist of this game :)

Word: why did

Top suggested searches:

why did the chicken cross the road

why didn't I think of that

why didn't they evans

why did chris brown hit rihanna

why did japan attack pearl harbor

why did bitty schram leave monk

why did brad pitt leave jennifer anniston

why did backstreet boys kevin richardson leave

Flash Me Friday - "My Favorite (hospital) Dish"

This week's addition of Flash Me Friday calls for pictures of our favorite "dish". It's kind of hard to pick a favorite dish while I'm here in the Hole, so I decided to take some pictures of any sort of food laying around my room. I did have a breakfast burrito this morning courtesy of the peeps from fantastic food services, but I forgot to snap a picture of it. The food here honestly isn't that bad, it just gets a little much after eating it for a month straight. You can only have chicken tenders so many times you know?

This is what you would call a smorgasbord of goodies.

Gotta have your own coffee pot here in the Hole. Also, having sparkling cider left over from hospital date night doesn't hurt :)

Stay thirsty my friends.

Are you interested in also participating? This brainchild of Jen over at The Groettum Family blog is going to be a weekly series in which we have to take a picture of her choosing without any cleaning up whatsoever. If you want in on the action, please visit here for the "rules".

What the _____?: September 9th, 2010

A while ago we started a little contest on this blog in which I post a picture and whoever comes up with the most clever/funny/witty/etc caption gets put into a drawing for prizes at the end of the year. Still don't have everything figured out as of yet, but we do know a couple of things 1) There will be multiple prizes 2) I love the participation so far 3) If you think your submission is inappropriate for others to see, you can always email your answer directly to me at ronnie@cysticlife.org :) 4) I've literally LOLed all weeks so keep it coming!

Alright, what do ya got!?!?

Last week's photo with the winning caption:

Winner: "Warning: Dunkin Donuts may cause frightening case of lock jaw."

submitted by Karen

2nd: "Hooooooow's my cooooooooffee breeeeaaaaaath!!!!!"

submitted by Suzanne

3rd: "Enter text right here!We love our triple espresso quadruple caffeine shot double mocha caramel fudge lattes!!!! And this pic was taken only after the first sip!!!!"

submitted by Sharon

I have a Popeye Arm!

PICC Line Today??

Rambling Off Updates about the Weekend

What's in a Google? WHO PAYS

Here's something I started a while ago on RSBR, cause as we all know, the weekends are slow around here. I call it "What's in a Google?". It's simple really; type one word into Google and see what the magic bot suggests for you. Once in a while, you can get some pretty funny suggestions. What's crazy, is I'm pretty sure that it means these are the most common searches.

Word: who pays

Top suggested searches:

who pays for obamacare

who pays closing costs

who pays for what in a wedding

who pays taxes

who pays for unemployment

who pays the most taxes

who pays gift

who pays for the bridal shower

who pays realtor fees

who pays income tax

First Day of Paradise

Flash Me Friday - "Our Bonus Room"

This week's addition of Flash Me Friday call for pictures of our "bonus room". We actually were really fortunate to pick up a pretty sweet bonus room in our house that was added on by the previous owners. It's attached to the master bedroom and is the perfect size for an office or a little sitting room. Right now, as you will see, we have our office stuff in there. The "grand plan" is to make our "formal" living room, aka the room with no furniture in it, into an office and to turn our office into a sitting room.

Are you interested in also participating? This brainchild of Jen over at The Groettum Familyblog is going to be a weekly series in which we have to take a picture of her choosing without any cleaning up whatsoever. If you want in on the action, please visit here for the "rules".

What the _____?: September 2nd, 2010

A while ago we started a little contest on this blog in which I post a picture and whoever comes up with the most clever/funny/witty/etc caption gets put into a drawing for prizes at the end of the year. Still don't have everything figured out as of yet, but we do know a couple of things 1) There will be multiple prizes 2) I love the participation so far 3) If you think your submission is inappropriate for others to see, you can always email your answer directly to me at ronnie@cysticlife.org :) 4) I've literally LOLed all weeks so keep it coming!

Alright, what do ya got!?!?

Last week's photo with the winning caption:

Winner: "Is that a noise-maker in your pocket or were you just scared stiff?"

submitted by Jon V.

2nd: "I see where all of my "GOOD GENE'S" went now."

submitted by Carolyn Bunt

3rd: "Is it true white men can't jump? Maybe I should try to see if I can touch his tassle."

submitted by Marla

Need a guaranteed laugh??

This has nothing to do with CF, but everything to do with making you laugh...

Watch this first in it's entirety:

Now watch this!!

This has become one of the most downloaded songs on iTunes currently and the guy now has his own t-shirts, fan clubs, etc. Gotta love the power of the Internet.

Thoughts heading into the Hole...

I thought it would be a good idea to piggy back off of Mandi's post and share with you guys what's going on in my little head in anticipation of this next hospital stay. Her post was quite the delight to read and just confirmed once again that she is my one and only. I've been very fortunate my entire life to be able to surround myself with friends that take CF "in stride" (Of course my family has been great too, but to be honest, where I come from, there's no choice in that matter). I've always felt that it was so important to have friends that "got it" but didn't care. Friends that would push me when I needed to be pushed and then would be right there to push when I didn't have the strength. I think I developed that screen in choosing friends by how I was raised. My mom never, AND I MEAN NEVER, let me use CF as a crutch or an excuse. I remember like it was yesterday coming to her as a youngster before school saying that I didn't feel good. Her response? "That's a good story, now put on your shoes cause you're going to school". I mean, I was a kid, give me an inch and I'll take a mile. Too be honest, not much has probably changed.

That's how all of this wraps back around to Mandi. She just never cared about CF. It came up in the first conversation that we ever had and I'm pretty sure we spent about 34 seconds on it. She was much more interested in my stories, or my likes, my family and my career. That's who I am. Now, that's not to say that CF hasn't played a major role in who I am today. It most certainly has. It's shaped how I react to those things that are most important in my life. So while I told her about my life experiences and my family, I was, in essence, telling her all about CF. I am a CFer, no getting around that. I have a disease. No getting around that either. But she was interested in how this diseased little CFer was living his life and nothing else much mattered to her.

I kind of got off topic there, sorry. This is about how great my wife is with me in the hospital. So first, obviously she just rolls with the punches. She knows I need it. She knows that we'd both probably rather be somewhere else. But she also knows that it's not the place that makes it special but the people who are there. She's done such a great job over the last couple of years of really making the hospital a special place for us to "get away". It's funny, cause we actually have way more interaction with other people while in the hospital (you guys know what I'm talking about. People coming in the room every 16 seconds). Somehow though, every time I'm in, she plans something or does something special that makes me feel like we're the only two people in the building. I really think it all comes back to, she just really doesn't care about the circumstances as long as "my man is there". And I'll tell you what, it's a great feeling knowing that the love of your life feels that way. There are very few people in this world that I can say with confidence "have my back" 100%, no matter what and Mandi would be at the top of that list.

As far as what I'm feeling going into this hospital stay (probably happening this Friday): I'm excited. I've always been pretty good at seeing the forest through the trees. The light at the end of the tunnel if you will. When it comes to the Hole, I know that it will get me close, if not all the way back to being where I need to be. When I say "where I need to be", I'm talking about being in a position where I can say with 100 percent certainty that I can stay on top of my game all by myself. Meaning I have the energy to do all of my treatments, get in all of my workouts and get enough rest to fight off infection. Right now, I don't feel that way. But here's the deal, I don't feel awful physically. In fact, it's rare that I feel awful heading into the hospital. I think it'd be a detriment to both my overall health and my lung function to wait until it got to that point. When it comes to the hospital I've always been VERY proactive. Shoot, I used to have them admit me with a 85% FEV1 cause I was used to 100%. I just never want to be in the position to say "if only I would have gone in sooner". So with that said, BRING. IT. ON!!

I've received many encouraging notes regarding this next hospital stay and I want to make sure you guys know how much it means to me. I appreciate your support and your prayers, but most of all, I really appreciate you guys cheering me on. It's really tough not to want to kick some major booty when I have a cheering section like you guys. So, wish me luck, stay in touch and I'm sure I'll be out of the Hole sooner rather than later.

**And just a reminder, some of you got the impression that I was already in. I am not as of this posting and it looks like the magical day will be Friday**

First Hospital Stay with My Husband

This week brings yet another first for Ronnie and I as a married couple. Ronnie's going in for his first tune-up since we've been married, and for some strange reason, I'm a little nervous. "Why??" you might ask. GREAT question. I have no idea why. This hospital stay is no different than any other he's had since we've been together. He's being treated at the same place. Same docs. Same nurses. Same routine. I'll go down to Tucson to be with him, just like every other time. So who knows why this one feels different. I have only two guesses: 1. Because I'm leaving behind our home and have to get everything all situated to leave or 2. Because I'm his wife, I know feel a greater sense of responsibility for his well-being while he's in.

Those are simply my best guesses. Neither of them feel quite right, when I say them out loud (err, type them). I don't really feel that nervous to leave the house. We did a bunch of cleaning and yard work today, to get the house in a position to leave it sit. We got the neighbors all lined up to check our mail, check on our house every other day, and keep an overall eye on things. All that's left is to empty out stuff that could go bad in the fridge, pack, and unplug the coffee maker (why on earth people unplug the coffee maker, I actually have NO idea. You just always hear that people do it when they leave for vacation. Is it because it could start a fire? If so, pretty sure you don't want the coffee maker plugged in when you're home, say, sleeping at night?! Please let me know why I do this!).

So while it doesn't seem like the house should make me nervous, maybe it's guess #2. Although, I also don't really feel a greater sense of responsibility for Ronnie's well-being now that we're married either. I mean, if I had to guess why I'm a little anxious about this stay, and it's not being worried about leaving our house, it seems like this would be it....but if it is, it's minor or very subconscious. Although I guess if I mentioned it as one of two possibilities as to why this stay is different, it can't be all that subconscious! It feels in some ways like I should take on more responsibilities regarding his stay, but truthfully, there's not much I can do. I don't have a house there, so I can't cook him home-cooked meals. I'm not responsible for his treatments or IV meds that's what RTs, nurses and Drs are for. His mom and brothers are always around to bring us anything from the "outside world" that may be needed. Hmmm, come to think of it, I'm relatively useless when it comes to hospital stays!!

However, I will say this - even though, for whatever reason, I feel a little nervous/anxious about this stay, I am excited. There are little things about hospital stays that I love. I LOVE Dunkin Donuts on weekend mornings. I LOVE listening to podcasts of our favorite radio program. I LOVE spending more time with his mom, stepdad, and brothers. I LOVE the feeling of getting ready to go for a walk outside. I LOVE watching Ronnie sleep as he gets pounded. I LOVE knowing that he's getting healthier. I LOVE walking down to the cafeteria for hot chocolate. I LOVE snuggling in his tiny hospital bed, trying not to rip out his PICC line. I LOVE the quality time we get to spend together. There's just something about hospital stays that bring us closer together....and that I am excited for!

So for better or worse, excitement or nervousness - hospital here we come :)

What's in a Google? WHY AM I

Here's something I started a couple of weeks ago on RSBR, cause as we all know, the weekends are slow around here. I call it "What's in a Google?". It's simple really; type one word into Google and see what the magic bot suggests for you. Once in a while, you can get some pretty funny suggestions. What's crazy, is I'm pretty sure that it means these are the most common searches.

Word: why am I

Top suggested searches:

why am I always tired

why am I always hungry

why am I not losing weight

why am I always cold

why am I here

why am I so ugly

why am I fat

why am I dizzy

why am I so gassy

why am I single

I think I can answer this one: You're here because you're fat. You're fat because you're not losing weight. You're not losing weight because you're always gassy. You're so gassy because you're always hungry. You're always hungry because you're tired. You're tired because you're dizzy. You're dizzy because you're always cold. You're always cold because you're single. You're single because you're ugly, fat, always hungry, cold, dizzy, tired and gassy.

Luminex Announces Commercial Launch Of New Cystic Fibrosis Test

Luminex Corporation (Nasdaq: LMNX), the worldwide leader in multiplexed solutions, announced the full commercial launch of its xTAG® Cystic Fibrosis 60 Kit v2, a new diagnostic test that can simultaneously screen a single blood sample for up to 60 cystic fibrosis-causing genetic mutations in a matter of hours.

The test is the most comprehensive and flexible FDA-cleared cystic fibrosis (CF) test available, featuring an unsurpassed level of gene mutation coverage. It will be used to screen potential parents to determine if they are carriers of CF-causing gene mutations, and as an aid in newborn screening and in confirmatory diagnostic testing in newborns and children. The test recently received 510(k) clearance from the U.S. Food and Drug Administration (FDA).

"The launch of our new xTAG Cystic Fibrosis 60 Kit v2 is a great achievement in cystic fibrosis testing," said Patrick J. Balthrop, president and chief executive officer of Luminex. "This cleared test has the most comprehensive genetic mutation coverage available today, featuring mutations found among Caucasians as well as those that are more commonly found in other ethnic populations. It will give doctors the ability to screen children and potential parents of many ethnicities for CF."

Cystic fibrosis is a common genetic disorder that causes the body to produce thick mucus that can clog the lungs and affect the digestive system. Approximately 30,000 Americans have cystic fibrosis. Although CF is most common in those of Caucasian descent, it can affect people of any race or ethnicity.

CF is caused by mutations in the CF transmembrane conductance regulator (CFTR) gene. To date, more than 1,500 of these mutations have been discovered(i). CF can only be passed onto a child when both parents carry a gene that causes the disease. According to the Cystic Fibrosis Foundation, more than 10 million Americans are symptomless carriers of CF-causing gene mutations.

Early diagnosis of CF is important and studies have demonstrated that early treatment and intervention can reduce a child's therapeutic needs, lower rates of medical complications, increase life expectancy and improve overall quality of life. Late diagnosis of cystic fibrosis can lead to health complications, chronic lung infections and compromised growth.

The xTAG Cystic Fibrosis 60 Kit v2 can detect up to 60 CFTR gene mutations from a single patient blood sample. These mutations include the 23 CFTR gene mutations and four variants (polymorphisms) recommended by the American College of Medical Genetics (ACMG) and American College of Obstetricians and Gynecologists (ACOG), as well as 37 additional common North American mutations, including 20 mutations that are found within Hispanic and African-American populations.

The xTAG Cystic Fibrosis 60 Kit v2 is flexible. It gives physicians the ability to select the mutations for which they want to test, allowing them to choose to test a patient for the ACMG/ACOG-recommended gene mutations or the entire panel of 60 CFTR gene mutations.

The test also is easy to use and requires only about one hour of hands-on time to process 48 purified samples. Additionally, the xTAG Cystic Fibrosis 60 Kit v2 does not require reflex testing. All test results are revealed and available for analysis at each run.

The xTAG Cystic Fibrosis 60 Kit v2 is one of a suite of CF tests developed by Luminex. The xTAG Cystic Fibrosis 39 Kit v2, which can simultaneously screen a single blood sample for up to 39 cystic fibrosis-causing gene mutations, is available throughout the U.S., Europe and Canada. The test is also cleared by FDA and was launched as a CE marked IVD product under the European Directive on In Vitro Diagnostic Medical Devices in 2009. It received clearance from Health Canada in 2010.

The xTAG Cystic Fibrosis 71 Kit v2, which can simultaneously screen a single blood sample for up to 71 cystic fibrosis-causing gene mutations, is available in Europe and Canada. The test became a CE marked IVD product in 2009 and was cleared by Health Canada in 2010.

Source: Luminex Corporation

http://www.medicalnewstoday.com/articles/199275.php

Flash Me Friday - "Our Dishes"

This week's addition of Flash Me Friday call for pictures of our dishes. I actually ran the dishwasher before calling it a night last night, so that's where you'll find most of our dishes. And as you'll see, our dishes are about as plain as you can get and just the way we like em. They were a wedding gift (mostly provided by our uncle Scott and aunt Mary *Thanks guys!!!!*). These are the most basic and I believe most inexpensive dishes that you can find at Crate and Barrel.

As you can see, we drink a lot of coffee around here, and when dishes are done, we're basically just washing our coffee mug collection.

Here's most of our plates minus what you'll see in upcoming pictures.

We've been using our smaller plates more often for some reason. I think Mandi is trying to tell me I'm fat!

Always wanted one of these plate rack thingys built into the kitchens cabinets.

Below the bowls goes the smaller plates, but since they're all in the dishwasher, I didn't include that shelf in the picture.

Are you interested in also participating? This brainchild of Jen over at The Groettum Family blog is going to be a weekly series in which we have to take a picture of her choosing without any cleaning up whatsoever. If you want in on the action, please visit here for the "rules".

What the _____?: August 26th, 2010

A while ago we started a little contest on this blog in which I post a picture and whoever comes up with the most clever/funny/witty/etc caption gets put into a drawing for prizes at the end of the year. Still don't have everything figured out as of yet, but we do know a couple of things 1) There will be multiple prizes 2) I love the participation so far 3) If you think your submission is inappropriate for others to see, you can always email your answer directly to me at ronnie@cysticlife.org :) 4) I've literally LOLed all weeks so keep it coming!

Alright, what do ya got!?!?

Last week's photo with the winning caption:

Winner: "They call me Mellow YellOMGWTF?!?!!!"

submitted by kimwylie0523

2nd: "I hope... that was just a fart."

submitted by Angie

3rd: "Quick, somebody get me some toothpicks; I can't keep my eyes open like this forever!"

submitted by Ronda Dell

Our Trip to New Jersey (pictures included)

This past week we were fortunate enough to be able to fly out to New Jersey and turn a work trip into a vacation. Or maybe it was a vacation into a work trip? Either way, it was nice to be laying on the beach one day and be moving the ball forward in business the next. Some family friends have a beach house in Avalon, NJ that they were gracious enough to open up to us. It's about a 1 minute walk to the beach from their house, so you really couldn't ask for a better location. Being born and raised in Arizona, pretty much everything is foreign to me on the east coast. I'm not used to seeing "quaint" towns. And if I see old towns, they're generally run down and falling apart at the seams. Avalon, NJ has the quaint old feel, yet it looks brand spanking new cause everyone does a great job on the old upkeep.

Here are some pictures for your enjoyment (I hope) with a brief description:

This was the horse that we rode from the Philly airport to the Jersey Shore. Say hello to the high performance of the Pontiac Vibe...just don't forget to feed the gerbils under the hood.

We stayed at the house of some family friends in Avalon, NJ

Side view of the house

View from the 2nd story porch. This is where we ate dinner most nights.

Outdoor shower. I actually never experienced this "dream" but I heard it was awesome. Looks like I have something to look forward to for next time :)

Coming into their house

Here's Mandi blow drying her hair. She has fun doing pretty much anything and everything.

These bikes got our fannies in the seats every day. We made it a morning tradition to ride to a local coffee shop to pick up some freshly brewed joe.

Some more seats that got a lot of use. My butt was parked in them at the beach.

Family photo from left to right: Ronnie, Wifey, Nana and Poppi

Recovering from "vacation"

I've always had a hard time on "vacation". I love traveling and seeing new sites and all that, but man, is it tiring. The thing you need to know about me is that I'm a "routine guy". I love knowing what I can expect and the less I have to think, the better. My body seems to like it that way too. I got plenty of rest and beach time during this last stint, but I still feel exhausted. So exhausted in fact that you'll notice their was no blog yesterday and this little mini-update today. We took some pictures that we really want to share with you guys, but to be honest, we're wiped.

I promise to get my rest and be back Wednesday to share with you the exciting vacation that we just returned home from. Thanks for understanding guys!

What's in a Google? WHY GIRLS

Here's something I started a couple of weeks ago on RSBR, cause as we all know, the weekends are slow around here. I call it "What's in a Google?". It's simple really; type one word into Google and see what the magic bot suggests for you. Once in a while, you can get some pretty funny suggestions. What's crazy, is I'm pretty sure that it means these are the most common searches.

Word: why girls

Top suggested searches:

why girls crop their photos

why girls shouldn't drink soda

why girls like guys

why girls like bad boys

why girls don't fart

why girls like twilight

why girls don't poop

why girls like jerks

why girls are better than boys

why girls don't like nice guys

GUILTY!!!! If Google was around when I was younger I can assure you that I would have typed that into the magical search box at some point. I vividly remember thinking as a kid that girls weren't capable of pooping and I wondered why. I'm just glad that I wasn't (or am) the only dumb kid out there :)