Friday, March 29, 2013

Emerging CF Pathogen Is Transmissible


A bacterial species increasingly responsible for lung infections in cystic fibrosis patients can be transmitted from person to person, although probably not directly, researchers said.
Genomic analysis of Mycobacterium abscessus isolates taken from clusters of infected CF patients found almost no sequence differences -- in fact, less than is normally found in isolates taken from a single individual -- "strongly indicating between-patient transmission," according to Julian Parkhill, PhD, of the Wellcome Trust Sanger Institute in Hinxton, England, and colleagues.
"Comprehensive environmental sampling" in the hospitals where these patients were housed failed to identify a source for these nontuberculous mycobacteria, whereas the patients had "numerous opportunities for within-hospital transmission from other individuals," Parkhill and colleagues wrote online in The Lancet.
"Although the exact transmission route is yet to be established, our epidemiological analysis suggests that it could be indirect," they added.
M. abscessus has recently been identified as a major cause of illness in CF patients, whose sticky lung secretions create a favorable environment for bacteria to flourish. Parkhill and colleagues noted that M. abscessus is hard to eradicate, requiring long treatment with toxic antibiotic combinations that often ultimately fail.
Some 3% to 10% of CF patients in the U.S. and Europe are currently infected with the organism, which has also been linked to dermal infections from tattoo inks and equipment.
In the case of CF patients, reasons for the pathogen's rapid emergence have been unclear. Possible factors include greater infestation in shower heads and the unintended consequences of chronic antibiotic therapy in these patients. Eliminating other bacteria may provide a previously unavailable foothold for mycobacteria, and some antibiotics may impair normal host-defense mechanisms.
In addition, person-to-person transmission has been suspected but never proven, Parkhill and colleagues indicated. Their current study aimed to find evidence that it contributes to the organism's spread.
They obtained 168 M. abscessus isolates from 31 patients seen from 2007 to 2011 at a CF treatment clinic housed at Papworth Hospital in Cambridge, England, and performed whole-genome sequence analyses as well as antimicrobial susceptibility tests.
The genomic analyses indicated that some of the isolates were virtually identical, differing by only 10 base pairs or less. It appeared that these isolates had infected a total of 11 patients in two separate outbreaks.
As an example, Parkhill and colleagues cited the case of one patient, whose isolates had genetic diversity that "was entirely encompassed within that of [another patient], indicating immediate relatedness by direct descent."
These isolates were of the subspecies massiliense, one of the three major subspecies of M. abscessus previously identified.
The researchers also examined patterns of antimicrobial susceptibility as a clue to the organism's recent genetic evolution. They found that several patients whose records indicated no previous exposure to long-term macrolides or aminoglycosides nevertheless carried M. abscessus isolates that resisted amikacin and clarithromycin.
These findings, too, suggested transmission between individuals. Parkhill and colleagues suggested that it was likely that these mycobacterial strains had picked up resistance elements as a result of coinfection with resistant organisms in some individual.
Parkhill and colleagues sought to exclude the possibility that the outbreaks originated with environmental contamination either at Papworth Hospital or elsewhere in the community. They determined that patients within the outbreak clusters did not live near each other or share water supplies, and tests of the hospital's water supply and equipment (including shower heads, bronchoscopes, and dishwashers) were all negative.
On the other hand, they found that, prior to becoming infected, each of the outbreak patients had been at the clinic simultaneously with a patient who was infected at the time. The exceptions, of course, were the initial cases in each outbreak cluster, whose route of acquisition of M. abscessusremains a mystery.
Finally, the researchers estimated mutation rates for the isolates, which indicated that the outbreak strains shared a common ancestor during "the period when opportunities existed for hospital-associated transmission." Other isolates not associated with the outbreaks were likely to have been genetically distinct for several decades.
But Parkhill and colleagues argued that transmission from close patient-to-patient contact was unlikely because of strict patient segregation policies in place at the Papworth clinic. "Patients are advised not to meet socially and are cared for in individual rooms," they wrote.
They suggested that "fomite contamination" -- in which the organism moves from person to another via an inanimate object -- was a more probable route of transmission. M. abscessus can survive severe physical and chemical assaults as well as dessication, they noted.
Another possibility is that aerosol generation during physiotherapy and lung function testing and other procedures in CF patients produce contaminated aerosols that subsequent patients breathe in.
The researchers added that, as a result of their findings, infection control procedures have been strengthened at Papworth. Steps taken include continuous sputum screening of all patients for nontuberculous mycobacteria, treating infected outpatients in a dedicated clinic with single-use rooms, and negative air pressure in inpatient rooms.
They indicated that it was too early to say whether these measures had reduced mycobacterial infections.

Thursday, March 28, 2013

Thankful Thursday: Eskimo Kisses & TOBI

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for expected blessings. God is so good. Sometimes he blesses us in ways we never expect and it's always awe inspiring. I am so thankful my God is one who blesses me in ways I could never dream of.

I'm thankful for eskimo kisses. Mckenna has been giving eskimo kisses for the last few weeks. It is so stinkin' cute to watch her move her head back in forth in the uncoordinated way toddlers do. The control to gently glide her nose against yours just simply isn't there and usually results in something on either of our faces banging together clumsily. I love it!

I'm thankful for apples, PB, and marshmallows. If you've never had the combo...try it. Try it NOW!



Ronnie's List:

I'm thankful for neighborhood and city parks. Mckenna and I go to some type of playground or play area at least once a day. It gives her a good opportunity to socialize with other kids and gives me a good opportunity not to play entertainer for an hour or so. I also love to see her try new things like a bigger slide or maybe the way she climbs steps :) 

I'm thankful for clinical trials. There are a couple of really exciting research studies/clinical trials being done at my clinic that I'm really pumped about. I can't start the first one until I'm done with this current cycle of Cayston, but I'm excited for when the time comes!

I'm thankful for new options. The FDA recently approved the TOBI podhaler for the CF community. This will significantly cut the delivery time of inhaled tobramycin. Anything that we can do that will give us some time back in our day is a very, very good thing.

So, what are you thankful for today?

Tuesday, March 26, 2013

Did God Give Me Cystic Fibrosis?

Once in a while I get questions that really get me thinking. This was such a question. I'm no theologian or Bible scholar, but I have a deep love for God and believe in His deep love for me. I also don't think He makes mistakes. Most importantly, I don't think I need to know all of the answers. I only need to know one thing...God is in control and His eternal plan is a perfect one.

Question: 

I just finished having a really deep intense discussion with my 14 year old son (with CF) about God. Little by little he has started to share with me his doubts about God. After much probing by me I realized that some of his doubts are coming from the fact that he doesn't "get" how God who is suppose to be loving gave this disease to people. I answered his questions as best I could.  
You seem to have such a strong faith now; did you ever question if there was a God and how people could have this disease? If so how did your questions get answered?Any insight is appreciated!


That's a tough one. My perspective on this may be a little different though...
Problem is, I never once thought the CF was a terrible disease. I simply was raised to believe the opposite and my mom did a great job of always pointing out the opportunities that CF afforded me (I'm not saying that you're not doing that). She was always quick to point out the man that CF was molding me into. Quick to remind me of all the people I would have never met had it not been for this disease.
As far as my faith, I don't think God gave me CF. Sure, He allowed it to happen as He could have stopped it, but He didn't. I believe that CF is more of a tool used by God to shape my heavenly body than it is to destroy my earthly one.

He also promises to work ALL things for the good of those who love Him. It never says that everything that happens is good, but we serve a God that can take 100 bad things and shape them into something that brings Him ultimate glory. And that's what this life is all about for me. God shaping me into the man that will ultimately receive the joy of worshipping Him for eternity.
I don't get caught up too much in my suffering or the suffering of those around me. This life on earth is but a blink of an eye, and in the big picture, pretty "insignificant". I'm not living for the here and now, but the later and forever.
The one time I questioned God and His works was when my 16 year old cousin died in a roll-over car accident. It was sudden. We didn't have anytime to prepare. She was young, vibrant, beautiful and had a huge heart for the Lord. I wondered how in the world God could ever use that for His glory. I questioned why He would take someone who could end up doing so much for His Kingdom here on earth. I brought these and many other questions to my pastor.
What he said solidified my view on my own life. He said that each of us have a race to run. Some run it faster than others. Because some run faster, they will finish the race first (die). We're all running towards the same finish line, and as all of the other runners, the goal is to cross the line. Whether we finish first or last is of no consequence to God, it's that we finished and finished well. He watches how we are running. Once we cross that finish line we will be in His presence and get to hear the words that we all want to hear more than anything, "Well done, good and faithful servant."
When I took the focus off the death of my cousin and the sadness it created for me, I was able to see the joy it was bringing to her and to my Savior. He wants us in His presence more than anything else. The fact that my cousin got to see His face before me may be because she ran such a darn good race!! I may also never know why she was taken from this earth so soon, but I do have faith that God is true to His word and will work ALL things for the good of those who love Him and have been called according to HIS purpose.
So, why does God allow me to have CF? I don't know. I do however know that He doesn't make mistakes. I do know that He views me as a perfect creation formed in His image. And finally, I do know that one day, all will be revealed to me and will be more clear than it could ever be here on earth.
Like I said, this is a tough one, but hopefully something I said here will help you and your son.

Saturday, March 23, 2013

My Journey to Compliance


Guest blog by Aubrey Bean


I want to start by first thanking Ronnie for this amazing and inspiring blog, and also for the opportunity to share my story.

My name is Aubrey, and I am a 24 year old from a little town in NH. I was diagnosed with Cystic Fibrosis when I was six days old, after I had surgery for meconium ileus. I was a healthy and (very) lucky kid, always having high PFTs and never having to "work" for them. I started enzymes when I was born, but didn't start any nebs or the vest until middle school. I had IVs when I was 8, 16, and 19, and those PICCs weren't because I was sick, but because my numbers happened to slip slightly below my 100% baseline. I spent my first 20 or so years of life being blissfully unaware of the possible repercussions of this disease. However, throughout my 4 years away at college, when treatments happened when it was convenient, and exercise happened never, I slowly saw my lung function decline to 85%. Every appointment I repeatedly promised myself that I would get it back up “eventually.”

Finally “eventually” had to happen now, when in my last semester of college the noncompliance and hatred for any kind of exercise finally caught up to me. In May 2011 when I was a college senior, 2 weeks before graduation, I saw numbers that stunned me, and even caused me to shed a few tears. I blew a 61%. I was sent into the hospital shortly after I graduated college, and was even more stunned by the fact that after 4 weeks of IV antibiotics my numbers improved only slightly. To make a long and pretty complicated story short, I spent the next 7 months in and out of the hospital, including close to a week in the ICU with pneumonia, unable to get out of bed. I spent those months battling a few different medication allergies, new bacteria, and even a fungal infection in my lungs. Finally in January, after my third case of pneumonia in less than 6 months, at 34% lung function, I made the difficult but necessary decision to quit my job, one I had been offered in October. I hated that I had to quit my job. I hated the fact that I lost 50% of my lung function in just one year. But more than that, I was scared that it would never come up again.
  
During my hospital stay in January 2012, I constantly heard the voices of multiple doctors telling me that pneumonia causes permanent damage and they weren’t sure how much lung function I would be able to recover. I even had one of them tell me I should shoot for 50% lung function, but not much higher. I left the hospital hearing those words over and over in my head. Their voices became an echo, at first scaring me, but suddenly I turned it around, and those words became my motivation. I realized that all I could do was try. I thought even if these doctors are right, I at least want to make a strong effort to prove to them and most importantly to myself, that no matter how much CF knocked me down in the past year, I was going to stand up and try my best to come back. So that’s what I did. I started to exercise (with the help of RSBR and other awesome CF blogs!) and made a vow to never skip a treatment, unless it was absolutely necessary.

I started slowly, walking on the treadmill until my lungs started to ache. My walks started getting longer, and feeling a little better. After a few weeks of just walking, I started to run, (slowly) and soon I was running very small lengths at a time. It was hard and extremely challenging. A couple times I almost made myself sick I coughed so hard, and other times I spent my ride home from the gym crying, wondering why I couldn't do more than walk. I was frustrated more than satisfied, and I was in pain more than comfortable, but I wasn't giving up! I continued to run more, and exercising became a lot easier and more pleasant within a few months. I kept at it about 5 times per week, and it was all worth it when in August of 2012 my hard work paid off and I ran a mile for the first time. Ever. Today, it is still worth it.

Sitting here writing this today, I'm reliving my 2011-2012 journeys and I realize just how different my life is, and how different my lungs are! I got another job in November, and have not been sick once. Also, last week I went to clinic, and I blew FVC 80 FEV1 65 (And I’m shooting for higher next time!), over 30% higher than last February. My PFTs increased by that thirty percent because of hard work, patience, a lot of faith, and a lot of treatment compliance. In the last year, I have missed one treatment (for my sister's wedding!!) and last week I ran 2.5 miles on the treadmill.

My last hospitalization was January 2012. Coincidence? I don’t think so!

In the last few years, CF has taught me so much about myself and life in general. I've learned life lessons I never would have learned otherwise. I have also learned that as much as I am being pulled in so many directions every day, I know that treatment compliance and exercise are the most important aspects of my life to never let go of, and I am very grateful for that lesson. I've also learned that although CF is tough, and may knock me down sometimes, I have proved to myself that I am tougher and I will always try my hardest to fight back.

Bio: My name is Aubrey and I am 24 years old. I live in southern New Hampshire, and have been seen by doctors in Boston, MA my whole life. I graduated from Merrimack College in North Andover, MA in 2011, with a degree in Spanish. I am currently employed at a bank in NH and I really like it! In my free time I like hanging out with friends, family, and my dog, singing, dancing, shopping, and of course working out and trying to stay as healthy as possible!!

Note from Ronnie: I can't thank Aubrey enough for sharing her story with us. We're seeing this type of story happen more and more, so I hope that it's a huge encouragement for the community. Maybe it can also serve as a wake-up call to those in college who have put their health on the back burner. People ask me all the time where they can find motivation - well, here it is!! The proof is in the pudding so they say. Thanks again cyster!!

Interested in contributing a guest blog about you and the fact that you kick some CF booty?!? Email me your blog idea at ronnie@cysticlife.org.


Friday, March 22, 2013

Fun at the Playground

I love to watch Mckenna make new friends :)

Thursday, March 21, 2013

Thankful Thursday: Daddy's Girl & March


It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for Ronnie. He helps me so much around the house and is always willing to take over on Mckenna duty. I am really blessed to be married to someone who is always so helpful.

I'm thankful for my little daddy's girl. Mckenna is a daddy's girl through and through, especially right now. When she gets hurt, only daddy can comfort her. When she's looking to snuggle, daddy is who she wants. I absolutely love that she has turned into a total daddy's girl. It's really wonderful for both of them.

I'm thankful for water. Sometimes nothing tastes better than a HUGE glass of water. I know this one is kind of odd, but we live in the desert...what do you expect?

Ronnie's List:

I'm thankful for March. March is one of my favorite months of the year here in Arizona. The weather is perfect. Everything is greening up and growing. The birds are chirping. And of course, March Madness is upon us. I just hope that my Cats can play well today and get a crack at New Mexico.  

I'm thankful for a good girl for the doctor. Mckenna has something going on with her arm, so we took a trip to see the doctor. The doctor thought it would be best to get x-rays, and so after leaving the doctor's office, it was straight to the radiologist. Mckenna was such a good girl while getting her "special pictures" taken.

I'm thankful for TV. Now that my little brother is without TV service, I see how fortunate we are to have it. This also means he's around more though which is always a good thing!!

So, what are you thankful for today?

Wednesday, March 20, 2013

How was your day?

Me: God, can I ask you a question?
God: Sure.
...
Me: Promise you won't get mad?
God: I promise.
Me: Why did you let so much stuff happen to me today?
God: What do you mean?
Me: Well, I woke up late.

God: Yes.
Me: My car took forever to start.

God: Okay.
Me: At lunch they made my sandwich wrong and I had to wait.

God: Hmmm.
Me: On the way home my phone went dead just as I picked up a call.

God: Okay.
Me: And on top of all that, when I got home I just wanted to soak my feet in my new foot massager and relax, but it wouldn't work!!! Nothing went right today! Why did you do that?

God: Well, let me see. The Death Angel was at your bed this morning and I had to send one of the other angels to battle him for your life. I let you sleep through that.

Me: (humbled): OH...

GOD: I didn't let your car start because there was a drunk driver on your route that would have hit you if you were on the road.

Me: (ashamed)

God: The person who made your first sandwich today was sick and I didn't want you to catch what he has.

I knew you couldn't afford to miss work.

Me: (embarrassed): Ok...
God: Your phone went dead because the person who was calling was going to give false witness about what you said during that call. I didn't even let you talk to them so that you would be covered.

Me: (softly) I see, God.

God: Oh, and that foot massager had a short that was going to throw out all of the power in your house tonight. I didn't think you wanted to be in the dark.

Me: I'm sorry God.

God: Don't be sorry, just learn to trust me in all things, the good and the bad.

Me: I will trust you.

God: And don't doubt that MY plan for your day is always better than your plan.

Me: I won't, God. And let me just tell you God, thank you for everything today.

God: You're welcome, child. It was just another day being your God, and I love looking after my children.

- Author Unknown

Tuesday, March 19, 2013

FDA Sends Cystic Fibrosis Treatment Back for More Study


The US Food and Drug Administration (FDA) has completed its review of Pharmaxis' New Drug Application (NDA) for its dry powder formulation of mannitol (Bronchitol, Pharmaxis) and has recommended that the company conduct an additional study to obtain marketing approval in the US, Pharmaxis announced today.
"The submitted data do not provide a favorable benefit-risk balance to support the use of inhaled mannitol in patients with cystic fibrosis 6 years of age and older," the FDA said in a complete response letter to the company.
"The determination of efficacy based on the 2 clinical trials conducted to date are not adequate because of the treatment-related frequent early dropouts in trial 301 for which the primary statistical analyses did not account and the lack of statistical significance in trial 302 for the primary endpoint," the agency stated.
In relation to safety, Pharmaxis said the FDA expressed concerns over the occurrence of hemoptysis, particularly in patients younger than 18 years.
The complete response letter follows a unanimous decision January 30 by the FDA's Pulmonary-Allergy Drugs Advisory Committee against approval of Bronchitol for the management of cystic fibrosis in patients aged 6 years and older to improve pulmonary function.Pharmaxis CEO Gary Phillips said the company is "clearly disappointed" in the FDA's decision, but noted that the regulator has provided guidance on the necessary measures to gain approval and that Pharmaxis will meet with the FDA soon to determine appropriate parameters of an additional clinical trial.
The FDA previously granted Bronchitol orphan drug designation for the treatment of patients with cystic fibrosis.
Bronchitol, which helps facilitate mucus clearance in the lungs of patients with cystic fibrosis, is approved for marketing for patients aged 6 years and older in Australia and for patients aged 18 years and older throughout the European Union.
http://www.medscape.com/viewarticle/781074

Monday, March 18, 2013

Weekend Recap...in Videos

We had a fun weekend just hanging out as a family. Ronnie's brothers were around a lot this weekend (Grant came up and stayed for the weekend and Andrew came by most days). We also hung out with Josh and Chrissy quite a bit. It was awesome.

In hanging around the house just playing, I caught some funny moments with Mckenna on video. ENJOY!!

The first video is a total mommy fail. Mckenna saw Uncle Grant have a lollipop the day before this, so I let her have one. Well the next day (when this video happened) Mckenna was playing in the pantry while I made dinner. She came out of the pantry with a lollipop, unwrapped, in hand, with a big smile on her face. I tried hard to be stern so she'd know she couldn't just eat them whenever she pleased, but I was too impressed that she got it out and unwrapped, that I let her have it. Not too mention I couldn't stop laughing!


Mckenna talks on the "phone" to people all the time...she loves talking to her uncles and aunts and grandparents...All at the same time!


This one time...at band camp...

Friday, March 15, 2013

Reaction: New CFF Infection Control Policy

I had absolutely zero percent interest in writing about this or sharing my thoughts on the matter. I was only going to share the new guidelines as I did this morning, here, and move on. What's sparking this blog is the responses I've been reading, receiving, hearing etc. Maybe what I write here will make it better for some and maybe it will make it worse for some.

[And now the obligatory preemptive strike. Everyone is entitled to their own opinion. How you feel about this and how it affects your life is valid. I respect the views of others. I'm sure there are other pleasantries that I'm leaving out that I will soon be reminded of. This is just my opinion, no more, no less.]

As many of you know who read this blog from time to time, I'm a pretty pragmatic guy. I see the world in black and white with very little grey. I like to focus on the rule and let others worry about the exceptions to that rule. I like facts. I prefer for others to give me straight talk and I appreciate that in return (Just ask my wife). I'm more concerned with the solutions to the problems than the problems themselves. I'm also a pretty visceral guy. Not in an emotional outburst sort of a way, but in an inward, deep-thinking kind of a way. I like to think of unintended consequences. I try to understand someones motivation rather action taken or not taken. I like to debate just to hear the other side, even if I agree with it. I will often not respond during a conversation because I'd rather respond with how I really feel than respond with how I felt in the moment.

Anyway, that's where I'm coming from with this.

So what was my first reaction when I received the email from the CFF regarding the email? Honestly, I said to myself, "Ok," and moved on with my day.

As I started thinking about it more, and with the assistance of the thoughts from others, my opinion has evolved, but maybe not by that much.

Here are the facts about cross-infection:

1. People with CF can get each other sick by spreading different bacteria.
2. New evidence suggests that this may be a bigger problem than once thought.
3. New evidence suggests that the bugs can "hang out" longer than previously thought.
4. New evidence suggests that droplets can go further in the air than previously thought.
5. CFers getting new bugs in their lungs that could potentially make them sick, even with their consent, is not a good thing.

Here are the facts about the CFF:

1. They are one of the best non-profit organizations around.
2. They have changed the way orphan disease research gets done.
3. Their job is to raise money.
4. Their job is to develop materials and provide some programs that support the CF community.
5. I would not be alive today without them doing what they do.

Here are some facts about me:

1. I've been to and spoken at 100's of CFF sponsored events both indoors and outdoors.
2. I've had good friends who happen to have CF my entire life.
3. I have a good relationship with the local CFF chapter.
4. I have no relationship with the national office and have never been to Bethesda, Maryland.
5. I'm not a cheerleader for the CFF.

Okay. So. What does all of this mean?

In short, the CFF can make whatever rule they want to make regarding what takes place at events they are running and/or supporting. There is absolutely nothing I'm going to say that will change the new guidelines set forth. They are not basing these on feelings, they're basing them on science, facts and research.

Do I think it's awesome? Of course not! But it's totally understandable. Who knows, maybe as we continue to learn more and more about pathogens, we'll be wondering why they didn't do this sooner. They are not doing this to protect themselves, they are doing this to protect us. I can understand if a business, or in this case a non-profit, doesn't want any part in putting us in a possibly compromising position.

So how do I respond? Well, at this point, I'm not sure. I know this though. When I don't like something, I don't turn to complaining, I turn to changing. If I think someone isn't doing a great job, I will try to take their job and do better. If I can't make a system run smoother, I'll opt to create a new system. If I think I can be better at x, y or z, I don't talk about it, I just do it. In other words, if I thought that a myriad of people with CF had to be at an event in order for it to be a success, I'd throw my own events with plenty of people with CF invited. But I don't think that. I think the CFF can still have successful events, and raise a ton of money, even while following the guidelines. (In fact, some CF centers have been enforcing some of these guidelines for years at their events [like CF Ed Days] already. Those events are still successful.)

I woke up this morning and these new guidelines didn't change my life one bit. There may be things that will change in the future with regards to my participation in certain events, but that remains to be seen. I'll still take the same precautions as I did before when hanging out with my friends with CF in the real world. Will my approach change with them? Maybe, but not by much.

I woke up this morning with a wife to love. I woke up this morning with a daughter to raise. I woke up this morning with bills to pay. I woke up this morning with a run to complete. I woke up this morning with 4 treatment sets to do. I woke up this morning with Cystic Fibrosis.

I have much bigger fish to fry. Now, maybe I'll just fry those fish 6 feet away from all of my fish-frying peers.

New Cross-Infection Control Guidelines


From the CFF...

We are writing to let you know that the Cystic Fibrosis Foundation recently implemented a new infection prevention and control policy for all Foundation events, meetings and offices to protect the health of people with CF. We took this step based on increasing medical evidence that the risk of people with CF spreading destructive germs to one another is greater than was previously thought. Our new policy reflects the advice of leading medical experts on this subject.

The health and well-being of people with CF is our topmost concern — it is at the heart of all we do. We have long had infection control guidelines in place to promote the safety of people with CF. With this new policy, we are acting proactively and immediately to reduce the risk of cross-infection among people with CF. 

The key elements of the Foundation’s new policy are: 
  • At any CF Foundation-sponsored indoor event or meeting, including gatherings like committee meetings, only oneperson with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.
  • At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other.
  • Under no circumstances shall individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex attend any CF Foundation events, meetings or offices.  
We understand that these changes are disheartening and difficult for many in our community. Among the many burdens of CF is that of social isolation. We also recognize the unique challenges that our new policy poses to adults with CF, whose full engagement is vital to helping us better serve the entire CF community. The Foundation embraces and owes so much of its success to the active participation of people with CF in all our activities, from major fundraising and advocacy campaigns to informal meetings in chapter offices.

Fortunately, there are alternative ways we can make Foundation events more accessible to people with CF. We are expanding our use of teleconferencing and live videocasts so people can take part in group activities remotely. We are also exploring other new technologies to help us engage people with CF more creatively and draw on their talents and experiences to strengthen our collective efforts.

You can find more information about our new policy, including FAQs, in a new section on the Foundation’s website:http://www.cff.org/aboutCFFoundation/InfectionPreventionControlPolicy/. We will follow up with more information and resources as we implement these changes.

We are confident that, with the right tools and in a spirit of partnership, the Foundation will be able to put our new policy into practice successfully. Thank you for your help as we take this important step.

Thursday, March 14, 2013

Thankful Thursday: Dwee Dwee & Dog Parks

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for Josh and Chrissy living so close. We live about a half mile apart in the same neighborhood. It is SO awesome. We are able to ride our bikes to their house. What's so cute is now every time we take Mckenna on a bike ride (which is every morning) she says "JAAAAHHH" and "DWEE DWEE" (which is how she says "Josh" and "Chrissy"). The other nice thing is Josh and I are able to go to the gym together in the morning (4:30AM BABY!). So instead of going by myself in the early mornings, Josh and I go together! Ronnie hasn't been able to lift because of his elbow, so I just lift with Josh, instead of doing my core class I used to do at 4:40). It's really great time together. 

I'm thankful for my parents getting to enjoy life together. My dad is "semi-retired" (we don't know what to call him because he kind of is done working and could be retired, but is still looking to work/consult/something....soooo we're not allowed to call him "retired). Anywhoo, my parents have been having a blast together traveling, hiking, golfing, you name it. It makes my heart so happy to know they are able to spend so much time just having fun together.

I'm thankful for new words. Mckenna learns new words (what feels like) daily. She is such a little talker with a vocabulary well over 50...I'd guess if we counted it would be at least 75 words. She is so adorable to hear talk. My favorite is how quickly she learns people's names, remembers them, and asks about them later. Mckenna saw her cousin (well Ronnie's cousins' daughter) named Emi for the first time in a long time a couple weeks back, and now she asks for Emi ALL the time. Last week we saw our neighbors' daughter who's 4 weeks younger than Mckenna a handful of evenings in a row, and now every time we pass their house she says, "TEEGA TEEGA" (for Teagan). It is just the sweetest thing to hear her want to see other people and hear how she says their names!

Ronnie's List:

I'm thankful for dog parks. Mckenna and I spend many of our daddy dates taking in the various dog parks that our city has to offer. It's funny though, because although we have a dog, we don't take our dog. Nope, just Mckenna and I. We walk around the perimeter of the play area as she points out different dogs and giggles randomly. Her day is made when a dog actually comes over that she can pet. It's such a great way to spend some time!

I'm thankful for a better gardening season. This last gardening season was better than the season before. We successfully grew 3 different types of lettuce, spinach, carrots, cilantro, broccoli and cauliflower. It's amazing to me how much better garden-grown vegetables taste compared to their store bought peers.

I'm thankful for new experiences. I had my first ever adjustment with a chiropractor yesterday using a deal I secured via Groupon. He was a friendly guy, very funny and he cracked me up (cue audience laughter). Seriously though, he was very excited that I had never been adjusted before and was amazed by how many joints he was able to unlock. He was aiming to unlock 24 and I'm pretty sure I heard 24 pops.

So, what are you thankful for today?

Wednesday, March 13, 2013

Looking for some inspiration?

I've had the honor to present you guys with many guest posts over the years from various booty kickers in the CF community. If you haven't had a chance to read them, or maybe you're new here, I would highly recommend checking them out!! I've highlighted a couple below to get you started, but you can also use the "tag cloud" on the lower right side of this website and click on "guest post". After you've read a couple, come back here and tell me what you think! Any favorites?

Kicking Cystic Fibrosis!!

My "Declaration of Compliance"

Want to live a "normal" life? Inquire within.

"I can never imagine myself running!"

These are great examples of what some cysters and fibros are doing in our community to stay healthy. You'll see that they all have something in common too, but I won't spoil it by giving you the answer.

I can't thank the peeps who have contributed to this blog over the years enough. Their stories are always inspiring and it gets a little dull for all of us if we only post about me and my family. With that said, if you are interested in being featured on RSBR, please shoot me an email at ronnie@cysticlife.org. Let me know what you'd like to write about. Can't wait to hear from you!!!

Tuesday, March 12, 2013

Altered Couch to 5k Running Program

Since it's been so long that I have ran consistently, I decided to get back to a running program that slowly introduces mileage. This is adapted from the Couch to 5k program as it is a little longer in length with a more gradual increase in time and therefore distance. It can be altered further, and if you find that your alterations work much better for you, please let me know what they are!!
Enjoy!!

Monday, March 11, 2013

Random Ramblings

We don't really have anything new going on around here to report, but it's Mandi Monday, so by golly, I'm going to write a blog...rambling and random as it may seem.

Ronnie and I both posted recently about stepping up our exercise. We both have followed through. I have been lifting in the mornings with my brother at 4:30am 4 days a week, and then in the afternoons Ronnie and I do some cardio together or on our own at the same time. As we've probably posted before, Ronnie isn't the biggest fan of running with me (yeah, I know, it sounds harsh, but I get it. I am quite the peppy exercise mate, and when you're feeling like you want to die, peppy isn't who you want to see! HA!) So on running days, we do something independently (usually), and on cross-training days we do something together. It's been going really well and feels really good! I am so proud of Ronnie for pushing himself in his runs and feeling really good that I've been able to push myself to be up and at the gym at 4:30am!

Mckenna is a bundle of energy and emotions. It is so fun to watch her grow and change. Last week was a bit rough, full of tantrums. But we may have a solution (for now). Mckenna has been stuck between needing 2 naps and 1 for awhile now. Last week we tried going to just one nap, and man was it a long week. She was only sleeping for 1 hour for her 1 nap, and that was simply just not enough sleep. As of Friday we decided to just try for 2 naps again and see if she wouldn't protest the naps and sure enough, she did a great job. She went down for naps sooner after getting up and slept longer. I think she was just thankful that she was getting to sleep and wake up happy! YIPPEE!! Our little monster is at least better rested and is having only 20% of the tantrums...thank goodness! Oh terrible twos, how I'm not looking forward to you!

We are total Bachelor fans. Yup. I said it. We record it. We usually watch it with Josh and Chrissy on Monday's as soon as I'm home from my high school girls small group (that I lead...not that I am in..ha!) Josh usually sleeps or works through it, but comes to hang out. Although the last few weeks he has just stayed home to sleep since we've been up at 4:30am. All that to say, I'm SUPER excited to talk The Bachelor tonight. For those of you who don't follow it, tonight is the night he picks the final girl that he will be with forever...or the next 2-3 months :) We know it's silly and we know the show never finds love for these people, but we love it anyway! HA!

Other than that, everything is pretty much business as usual!