Saturday, February 20, 2010

Rondi and J-Dizzle Sing Wild Horses

For this sound off Saturday - you get the hear the WONDERFUL sounds of our voices.
Sorry Jezzy doesn't chime in more form the backseat. Enjoy!

Friday, February 19, 2010

New Drug Class Offers Hope Against "Superbugs"

This is very new discovery, but exciting to hear nonetheless!! For full article click here.

LONDON, Feb 18 (Reuters) - Swiss scientists have found a new class of antibiotics, offering drug developers a fresh weapon in the fight against multi-drug resistant bacteria or "superbugs".

Researchers from a privately held Swiss biotech company Polyphor and the University of Zurich said the potential medicines are effective against a type of bacteria known as "gram-negative", and offer hope for new treatments for serious and often life-threatening infections.

The antibiotics work by deactivating a protein vital for the formation of the bacteria's outer cell membrane.

Polyphor's chief financial officer said the firm was in talks with pharmaceutical firms about possible licensing deals on the most advanced drug candidate, called POL7080, which selectively kills the dangerous pseudomonas aeruginosa, a common bacteria that can cause lung infections.

"There is a big need for new antibiotics that can overcome rising resistance," Michael Altorfer told Reuters. "And if you look back in history, finding a new class of antibiotics is an event that probably happens about every 20 years."

Until recently, antibiotics have been viewed by drugmakers as a low-growth area but the emergence of superbugs has rekindled interest in the field.

A study published in the journal Science found that POL7080 was able to target and deactivate an essential protein of the pseudomonas bacteria, killing the bug.

A report in December found that gram-negative bacteria account for around 63 percent of infections in hospital intensive care units. Experts commenting on that study said they feared resistance among gram-negative bugs was rising while the number of medicines to treat them was shrinking. [ID:nN01516996]

Drug-resistant bacteria kill about 25,000 people a year in Europe and about 19,000 in the United States.

Altorfer said Polyphor is planning to start Phase I clinical trials in healthy volunteers in the second quarter of this year and had begun out-licensing negotiations with potential pharma partners. He declined to name any of the firms in talks.

Pseudomonas aeruginosa is a particular problem in hospital acquired infections and in patients with cystic fibrosis, whose lungs and digestive systems become clogged with a thick, sticky mucous.

Altorfer said he was keen not to raise hope, but the drug could potentially be made in an inhalable form to help cystic fibrosis patients, of which there are around 70,000 worldwide.

"But there are other indications that could come first, such as hospital acquired infections," he said.

Full article can be found at

Thursday, February 18, 2010

Let's Help This Cyster Out!!!

I'd like to introduce you guys to a fellow cyster, Chelsey Werchan. She is 23 and currently working on her Master's degree in Health Psychology.

Her thesis for her Master's is examining airway clearance adherence and quality of life in adults with CF. She says, "I'm so excited for this opportunity to advance knowledge in the field of psychology and medicine to help the medical system better communicate and work with our population!".

Here's where we come in. She's conducting a study to help her for her thesis and she needs participants to answer some questions. I did the survey myself and it took me 10 minutes. The only qualification that I know of is that you have to be an adult CFer. She will collect no personal information in which you can be identified and an email isn't required. It's painless, quick and simple...and I actually found the questions very interesting. Promise.

Here's the link to the survey and I highly encourage you guys to take 10 minutes out of your day to help out Chelsey and support her great efforts:

Wednesday, February 17, 2010

Is Loving Salt a CF Thing??

I'm probably the only one, but I found the following article fascinating for two reasons: I'm from Arizona and I love salt.

Now, I do have a little background to give you on my love AND hate relationship with salt however. While growing up I added salt to anything and everything...and I mean everything. I was one of those, salt first, eat second, salt again and then decide if I should put more salt or not. I distinctly remember adding salt to my red jello on Thanksgiving Day 1991 and I LOVED it. I'm telling you guys, I was a walking and talking salt-adding machine.

Like many of you, I also became a salt lick with any sort of physical activity. I used to always make jokes with the guys and lean over there fries and ask them if they needed any more salt with that. My hats were always surrounded with a salt rim and I was constantly becoming blind by the salt crystals that would drip into my eyes.

My relationship with salt took a turn for the worse however in 2003 when my kidneys were having a rough go of it in the hospital. I was actually flushed out with fluids and then asked to leave by my docs cause they couldn't in good faith give me anymore antibiotics. My kidneys were being damaged and they didn't want to harm them any further. I asked them about some simple steps I could take to help my kidney function and they came up with two suggestions: Drink more water and stop adding table salt to my food. To make a long story short, I've added table salt to my food ONE time since 2003. It was to some canned corn last year that I just wanted to see what it tasted like again. I've had a few issues here and there with my kidneys, but they've never been as bad as they were in 2003. Was it the strict "no table salt diet"? Who really knows right?

Ok, so I totally got sidetracked there, but I'm still wondering; Do cysters and fibros have a special affinity for salt? Is it just a coincidence that I've met many who crave salt just as our cells crave the balance of salt and water (super layman's terms there)? I don't know, you tell me.

Here's the article though:

Arizona is taking steps to improve the health of its residents. The state joined a national initiative to cut 20 percent of sodium from diets in the next five years.

"Most people are eating twice as much salt as they should and about 80 percent of it comes from pre-processed foods, like canned soups and frozen dinners," said Will Humble, Interim Director of the Arizona Department of Health Services.

"The fact is the sodium line in the nutrition facts label is just as important as the fat line, but it's often ignored. The overall goal is to get food processors to reduce the amount of salt in their products. Until that happens, everyone has to pay a lot more attention to the sodium information in the nutritional facts."

A recent study in the New England Journal of Medicine found that cutting dietary salt by three grams per day could reduce coronary heart disease and stroke.

Humble says if we cut 30 percent of the salt out of our diet, it would have the same benefit as half the smokers in the state quitting.

"If we were able to knock back 30 percent, the amount of salt that folks eat here in Arizona by 30 percent, it would be the public health equivalent of getting half of Arizona smokers to quit cold turkey today," said Humble.

Too much salt causes things like high blood pressure which leads to higher medical costs.

"Every year in Arizona, we spend between 200 and 400 million dollars that we don't need to spend on controlling blood pressure and the consequences that come from eating too much salt," said Humble.

Humble says a lot of salt comes from processed foods which makes cutting back on salt harder than you think.

"Initially, folks think, ‘Well, I don't use much salt from the salt shaker so I'm okay.' Well, you're not okay because 80 percent of the salt that you're getting is coming from processed foods," said Humble.

One way to reduce sodium intake is to watch what you buy at the grocery store and the places you eat. Fresh fruits, vegetables and meats are naturally low in sodium, while the amount in processed foods varies greatly. Nutrition labels help make healthy choices about sodium in bread, sausage, chips, etc.

Full article at

Tuesday, February 16, 2010

A Young Girl's Cry for Help

I thought I would re-post this question and response because it applies to so many of us...

Young Girl's Post:
Mods, feel free to move this, as I am a teenager, but I'm seeking advice that adults can help with. I have a feeling I've posted things like this before. In Jan, I was in the hospital, got a gtube..lungs went from 50% to 100%. Now, I am not sure..but I believe they are back at 50%. My weight has also dropped a few pounds because the machine was messing up. I don't know what to do with myself. I go into this is great, but I don't do many of my meds at home. I can't keep doing this, I want to live a long life, and this isn't helping. I feel like crap, when I wake up I DREAD coughing because I know that I will be bringing a lot of stuff up..and many times I end up throwing up because of it. I have zero energy. I get out of breathe going up the stairs... At PE Thursday we I couldn't even run a full lap..I ran 1/4th, after that I felt horrible. What is wrong with me? Why does my mind not want to do these meds? I get so frustrated with myself..but I have no willpower.

My response:
I can't stress enough the importance to doing your treatments faithfully at your age. Believe me, we've all been there. I haven't met ONE CFer that is dying to do his or her treatments. I totally agree with previous posters that the future of CF is looking brighter by the day and although there may never be a cure, they WILL come up with a med that takes away many of the affects. The key is to keep your lungs healthy enough so when that day comes, you're lungs are somewhat normal. They've told me that I have a lot of scarring in different areas of my lung. That lung is gone and it's never coming back. Now my focus is to not let any more areas get scarred.

I agree with coming up with a routine. Maybe every morning you sit on your vest and do the nebs while doing something on the computer? Homework? Facebook? Myspace? Personal blog? Do you watch TV? Every time your show comes on, make it a habit to do your treatments while watching it.

I figure that anytime I sit down, I can be doing my treatments. Believe me, it wasn't this was when I was your age, but if I could turn back the clock and do it over again I would. I'm paying the price now, for my neglect in the past.

I really hope this helps and you can message me if you'd like to talk further.


Readers: What would your response have been?

Monday, February 15, 2010

The Weekend of Love: Engagement Photos, Bridal Shower and Dinner Date

With Sunday being Valentine's day being the day of love, we decided to make this the weekend of love. Well, maybe it wasn't a conscious decision, but somehow all of our weekend activities were love-based.

On Saturday Ronnie and I had our engagement photo session with a great guy and great friend of ours, David. You'll have to check out his work because he's spectacular. He is so great at snapping reality, not posed pictures. And that's EXACTLY what we needed because Ronnie and I aren't exactly the most photogenic couple, so David's ability to capture us, just being us, was crucial. So anywhoooo, we all headed to downtown Phoenix a few hours before sunset, and began posing all over town. We had a blast. With Ronnie and David cracking jokes, I think we were able to capture a handful of genuine smiles. After a long photo session, that even included a wardrobe change (sounds legit huh?) we headed to a GREAT bbq joint in the city that I have never been to that the boys raved about and had some bbq pork sandwiches, french fries and beans. It was a FUN shoot and a FUN time watching the photo master, David, work his magic. As soon as we have the photos, we'll be sure to post some for your viewing pleasure (and possibly a few good laughs at our "picture smiles").

THEN Sunday morning was my brother's fiancee bridal shower (Her name is Chrissy if you missed any blogs about my bro and his new fiancee, getting hitched on March 28th). It was a great opportunity to meet the other ladies in her life and her family's lives that I didn't already know. We did the standard lunch, gifts, and a few fun games. It was a great way to spend Valentine's day morning, basking in the glory of my brother and his bride-to-be's love.

Then it was home to my own Valentine for the remainder of the day. Since my mom is in town, we decided to postpone the romance to next weekend, even though she INSISTED that we go out. We have many many days to be romantic, and only 2 more until she heads back home. BUT we had a great afternoon and evening together. Ronnie and I found a great recipe online for a yummy chicken casserole and headed to the grocery store (one of our favorite activities together) to get the raw materials for our masterpiece. We came home from the store and did some prep work for the meal (I love cooking with my man in the kitchen...he always pauses to crack some jokes, give me sweet little kisses or give me love pats :) !!) After dinner prep, came some nice cheese and crackers while watching Fool's Gold (anyone seen that movie? It's CUTE). It was then onto the main course and a new show, Undercover Boss (we HIGHLY suggest it). And that was just about it. We spent the remainder of the night snuggling up on the couch channel surfing and just enjoying time together.

All in all it was a wonderful weekend of love. As I told Ronnie earlier today, it's the only Valentine's day we'll spend as an engaged couple, and this weekend was a perfect way to celebrate. What did you all do to celebrate love or rebel against it? Any single people out there have an anti-valentine's day party? Have any Valentine's day parties or dates? Let me hear it so I can snag some romantic ideas for next weekend when we have our V-day bash numero dos.

Sunday, February 14, 2010

The First (and only) Time I Got Engaged!!!!

**I thought this video would be appropriate for Valentines Day :)**

What began as a nice leisurely hike up a mountain, ended with a proposal on Thursday! I couldn't have picked a more perfect setting: a mountain top, city views and the sunset. I was also able to capture it all on film, so enjoy!

If you watch until the very end you get to see the ring!