Thursday, April 4, 2013

$$$ for Preexisting Conditions Pain ACA


From Medpage Today
The high cost of covering adults with preexisting conditions before 2014 could signal greater costs for all individuals within the broader health insurance market, a health economist warned lawmakers.
The Pre-Existing Condition Insurance Plan (PCIP), which the Affordable Care Act (ACA) created as a way to provide health coverage to those with preexisting medical conditions before other aspects of the law take effect in 2014, does nothing to reduce the costs of care for those patients, Thomas Miller, JD, resident fellow at the conservative American Enterprise Institute here, said at a congressional hearing Wednesday.
Despite garnering only 110,000 enrollees -- far less than the 375,000 expected -- the PCIP program has run out of the $5 billion Congress gave it.
.....
The concern is that those with preexisting conditions could spell more trouble for the broader population if more healthy young people -- those still paying premiums but not using as many services -- don't sign up for health coverage when open enrollment starts later this fall. Health insurance companies would need those premiums to help offset the most expensive individuals it would have to cover.
No Democrat and only two Republicans attended the hearing while Congress was out of session and most lawmakers were back in their home districts.
However, the committee's top Democrat, Rep. Henry Waxman (Calif.), issued a statement supporting the ACA while adding the law's reforms starting next year will better solve the problems PCIP tried to address.
"The program was always designed to be a temporary solution to help some of the sickest Americans who had been locked out of the insurance market to get coverage," Waxman said. "It was also set up to be more accessible than the many state high-risk pools that have high premiums, long waiting lists, or are closed to new enrollees, as Florida's has been for more than 20 years."
To read the full article, please click here for access to Medpage Today.

Wednesday, April 3, 2013

A Common Frustration

I wanted to post this email and my response as I'm sure plenty of you out there can relate.


I read your blog every time you post and I just love all you do for the CF community. I am not sure what exactly my point is in the email except that I guess I am a bit discouraged. I read your blog and see stories like today with your guest blogger and I am so happy for her but discouraged at the same time. I guess I don't understand how _____ can be so compliant, do all his meds, exercise, treatments, and yet we are still sitting at high 50's/low 60's on pfts with IV's and hospital now almost every 2-3 months! It just doesn't make sense to me. 
We are doing everything they say and pfts just go down. I know that colonized pseudo, apergillus, and yeast are all to blame in his lungs along with the worse sinus disease our doc has ever seen in a kid all that sinus disease is with many surgeries and he does daily nose sprays, ointments, and sinus rinses. But I see others say when their pfts go down its because of lack of compliance and exercise and then when they do those things they see improvement. But he is compliant!  
I guess I am just frustrated that we are literally doing EVERYTHING we can including now adding a nose nebulizer to dispense antibiotics straight up his nose and I am still watching my kids pfts go down. :( Again, not sure why I emailed except I am a bummed mom that just doesn't get CF ya know? Makes no sense to me. 
Thanks for your blog and all you do.
Your frustration and feeling of being discouraged is totally understandable. I'm sorry to hear that ____ is struggling so much at this time. Not cool for a kid his age to be held back!!

My response to you would be nothing earth shattering, but maybe something I say will help.

 - First, even though it feels like this has been going on forever, it could also just be a season in his life. We never know how long the season will last, but we do know that we have to keep our head up so we can recognize the next season when it comes.

 - When I was his age, I also had PFT numbers that dipped into the 50's. 

 - My best guess, which I'm sure is the best guess of the docs, is that's _____ sinuses are the big issue. Sounds like they are the driving force behind his uphill battle with his lungs. I'm happy to hear you added a sinus neb.

 - If what you're doing now isn't working, do something else. There is something out there that will help. At least, that's always my attitude. Could be a med. Could be a treatment. Could be exercise. Could be more hours. Could be prayer. Could be a combination of a bunch of things. Continue to tweak until you find the right combo. There will be road blocks and speed bumps along the way, but you have to keep driving.

 - All we are called to do is the possible. If we take care of the possible each and every day, there is no doubt that God will take care of the impossible.

 - Continue to be the strong mom that you are. CF is unpredictable. For _____, you must be that rock that is always predictable. He's always watching and takes his cues from you.

Again, nothing I said there is something you haven't heard before. Unfortunately, there isn't a magic pill. All we have is what we do each and every day that will determine our outcome. We can do everything right and still be disappointed in the outcome, but we must remember that our expectations aren't always in line with the Will of the Father. We all have our ceiling when it comes to our health, our only job is to make sure we strive to do everything to find out where that ceiling is.

I'll continue to pray for ____ and your family.

Monday, April 1, 2013

A Fun-Filled Easter Holiday

Holidays are always a blast. Not only did we get to celebrate that Jesus died for our sins this weekend and rose again on the 3rd day, but we got to celebrate it with fun traditions and family.

We always try to see both families on holidays whenever it's possible. This year, with my parents being back in the US, we split up Easter weekend. Saturday we went to my parents house with Josh and Chrissy and spent the day together, had dinner together, and we all slept there. Sunday morning we went to church and then came home and did the traditional Easter basket opening (for Mckenna) and did Mckenna and adult Easter egg hunts. Mckenna had the hunting down, but grew tired of it about 75% of the way through and went to play with her doctor kit. The adult version of the Easter egg hunt was a blast. My parents put cash into eggs and hid them. Each of the 4 of us took turns going and finding one egg. We all got a little competitive to try to get the most money because whoever got more money got a BONUS! It was awesome....and really fun!!

After all the Easter morning fun, Ronnie, Mckenna and I jumped in the car and headed down to Tucson for some family fun with Ronnie's extended family. Mckenna slept the whole way (which made for an enjoyable drive). When we got there we all ate lunch, relaxed, played, and did another Easter egg hunt.

All in all it was an incredible holiday weekend. We are so blessed to be able to celebrate such an important holiday with such incredible family. Hope everyone had a great holiday weekend. He is RISEN!!!


Saturday, March 30, 2013

Vitamin D Levels Tied to Lung Health


Serum vitamin D levels had a significant positive correlation with pulmonary function, most prominently in patients with a history of tuberculosis (TB), data from a large cross-sectional study showed.
...

In the subgroup of patients with a history of pulmonary tuberculosis, the absolute difference in FEV1 by 25-OHD level was four times greater than the difference in the overall population, they wrote in the Journal of Clinical Endocrinology & Metabolism.
...

"The precise mechanism for this phenomenon remains unknown, but it has been suggested that vitamin D accelerates recovery from infection by enhancing innate immunity via upregulation of antimicrobial peptides," they added.
Observational studies of vitamin D and respiratory function have yielded mixed results. Clinical trials of vitamin D supplements as prophylaxis against respiratory disease also failed to demonstrate a definitive association, the authors said.
...

Comparing the top and bottom quartiles of 25-OHD, the authors found a difference of 229 mL for FEV1 in the subgroup of participants with a history of pulmonary TB (P<0 .01="" p="">
The study had some limitations, namely that it was cross-sectional so reverse causality could not be ruled out. Also, the overall low 25-OHD levels in the participants limited the authors' ability to adequately estimate optimal vitamin D levels for lung function. Finally, data on sun exposure and dietary or supplementary vitamin D intake were not available.

To read the full article on Medpage Today, click here.

Friday, March 29, 2013

Mckenna Rapid Fire Words!!

I think her decent vocabulary is from having two parents who never shut up :)

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