Saturday, March 27, 2010

Runner with CF Finishes Marathon

Irvine runner with Cystic Fibrosis finishes L.A. Marathon

Aliso Viejo resident Tyler Polasek from Crean Lutheran South in Irvine took another big step by finishing theLos Angeles Marathon over the weekend.

"Tyler has Cystic Fibrosis, nevertheless, he ran an incredible time and accomplished something that many never thought would be possible," said Crean Lutheran cross country coach Tim Brink.

"Even with this condition he was still able to push through the pain and training and finish in a very respectable time of 3:11.20. Tyler plans on continuing to improve his marathon time and eventually phase into triathlons."

Original article can be found at http://www.ocregister.com/news/ammann-241001-coach-game.html

Friday, March 26, 2010

My First Time Ever Traveling to China


**Note, this video is from December of 2008. I'm not currently traveling to China :)

Thursday, March 25, 2010

Why Cystic Fibrosis Patients Live Longer In Some Countries

The largest study to date of cystic fibrosis (CF) says that people suffering from the disease live longer in some European countries than in others, mainly due to earlier mortality and differences in access to care and its quality. The research, which was supported under the Sixth Framework Programme (FP6), is published in The Lancet journal.

The study, undertaken by a research team at the University of Dundee, UK together with European colleagues, was carried out to determine if differences of care and available resources have a significant effect on the survival rates of CF patients. The results showed that there are disproportionately fewer CF patients than expected in countries that were not part of the EU in 2003. According to the findings, if these non-EU countries had similar demographic profiles to EU countries, their number of CF patients would rise by 84%.

There is no cure for CF, which is one of the most common inherited diseases. It is caused by a genetic mutation and can occur in an apparently healthy baby if both its parents are carriers of the defective CFTR (cystic fibrosis transmembrane-conductance regulator) gene.

Symptoms in children include slow growth and poor weight gain, chronic coughs and lung infections, insufficient absorption of nutrients, and bowel and intestinal problems. Many sufferers die young in their 20s and 30s, often from lung disease resulting from mucus build-up in the airways.

Researchers gathered data, including age at diagnosis, sex and genotype, on 29,025 CF patients from 35 European countries. This data was used to create a register to compare differences between patients in EU and non-EU countries and to estimate how many people in Europe have CF. Throughout the study, the team used a country's EU membership status as it stood in 2003 (when there were 15 EU Member States).

The study showed that the average age of CF sufferers throughout Europe is 16.3 years with a difference of 4.9 years between EU (17 years) and non-EU countries (12.1 years). The proportion of patients over the age of 40 was also higher in the EU countries (5%) than in non-EU countries (2%). In addition, the diagnosis of CF in children under one year of age is rare in non-EU countries, something that could be due to a lack of data or to unrecognised deaths of babies with CF.

The authors of the study said, 'We have shown that far fewer children and young adults have cystic fibrosis in non-EU countries than we expected. This finding is reinforced by the increased chance of patients surviving to 40 years in EU countries, even if they have the [most common and severe form of CF] mutation.'

They added, 'The difference between the number of patients with cystic fibrosis between EU and non-EU countries is striking in view of the similarity of general population sizes and the expected disease prevalence [from genetic calculations].

'This disparity in demographic indicators might be due to reduced availability of specialist drugs, equipment, and trained multidisciplinary staff in non-EU countries, rather than lower gene frequency, greater disease severity, or poorer treatment adherence than in EU countries.'

The authors are concerned that both unrecognised CF cases and misclassification of infant deaths could be responsible for the low CF figures in non-EU countries. They concluded, 'In our study, both factors are likely to affect new members of the EU and these matters need urgent attention by governments.'

Countries included in the study that were already members of the EU in 2003 are Belgium, Denmark, Germany, Ireland, Greece, France, Italy, the Netherlands, Austria, Portugal, Sweden and the UK. In addition, the Lancet study focused on the following nations: Armenia, Belarus, Bosnia and Herzegovina, Bulgaria, Croatia, Cyprus, the Czech Republic, Estonia, Georgia, Hungary, Iceland, Israel, Latvia, Lithuania, Macedonia, Moldova, Romania, Russia, Serbia, Slovakia, Slovenia, Turkey and Ukraine.

For more information, please visit:

The Lancet:
http://www.thelancet.com/

University of Dundee:
http://www.dundee.ac.uk/

To visit the full article, please click here. Or go to http://cordis.europa.eu.

Wednesday, March 24, 2010

Workouts Galore!!!

A little update on my workouts:

I've been VERY good at going to the gym since I asked you guys to hold me accountable. And I guess I shouldn't just say that I'VE been good as Mandi has really been pushing us to get to the gym everyday. Yesterday we only had a 20 minute gym session because of work, errands and a quick trip out of town, but we made the most of it. We both lifted as much as we could as fast as we could and were sweating like crazy at the end of the workout. It's amazing how much you can get done if you just put your mind to something and push. We may work that "power" workout into our routine from time to time as it gave us a nice cardio workout as well!!

Since asking you guys to push me and making a promise to Mandi that I would work hard to be healthy for our wedding, I've missed running ONCE. It was actually yesterday that I missed it, so it was good that we got some "cardio" in at the gym. Two days ago I pushed myself during my run and probably ran the fastest mile that I've run for quite some time. I was huffing and puffing when I was done, but of course I felt a big sense of accomplishment. On my way back to the house, I actually found a shade tree and leaned against it to catch my breath and a woman stopped to ask if I was alright. She even offered me water and stayed there for a bit. I didn't realize I looked that bad after a run, I must have done something right!!

So anyways, another big thanks to you who are holding me accountable and cheering me on along the way!! Oh and I should mention, apparently I was sending too many messages through Facebook and my account got disabled. We're hoping to resolve the issue, but if you need to get a hold of me in the mean time, you can do it through here or through email at ronnie@cysticlife.org.

Have a good day guys :)

Tuesday, March 23, 2010

Top Ten Questions about the Healthcare Bill

As most of us are well aware, the President will be signing a new healthcare bill into law today. Here's my top ten questions about it as we move towards the future. If you think you know the answers, please feel free to chime in :)

10. When will I be able to get private insurance on my own?

9. How costly will my insurance be?

8. Will it be as good as my current insurance that I have through my mom?

7. Will my doctors pay be decreased?

6. Is there a lifetime max?

5. I'm sure there is something else, but I forgot to put a #5 in the original blog, thanks Piper!!

4. Will there be longer waits to see doctors and to get into the hospital?

3. Will care become better, worse or stay the same?

2. Will insurance profits go up or down?

1. Ultimately, who is the buck getting passed to to cover all of this?

What are your questions?

Monday, March 22, 2010

Shaping Up to Get Hitched

It's exactly two months until our wedding day, and I am EXCITED. We have everything all set, except the honeymoon -- all of your feedback/ideas helped a lot and we have narrowed it down to a few options. Unfortunately, two months feels like forever away, but it's just enough time to get into "wedding" shape. So that's exactly what I'm going to do. I know it sounds a little silly, and I will be honest, typing it I feel a little vain...buuuuut I'm sure most people feel or have felt this way. I want to be looking as good as I have ever looked and be in better shape than I have ever been. It just seems like it makes sense: start a new life the best "me" I can be and look great in pictures that will surface time and time again.

As we all know all too well, you can't get into shape overnight, so I must start today. My goal is to run 3 days a week and get into the gym 3 days a week at the very least. It will be tough with the ever growing list of to-dos, but I will just have to make it a priority. I don't so much want to lose weight, I want to stay at the weight I am now, but gain a few pounds of muscle (without looking like the hulk in a wedding dress! hehe)

So who's got some good tips? Anyone do the pre-wedding shape-up and have some pointers for me? Anyone want to join me in the 2 months work out challenge? Wedding or not, it's always the right time to become the best "you" you can be!!

Sunday, March 21, 2010

Spotlight Sunday- Public Service Announcement

Today I wanted to highlight one of the more entertaining and well written Cystic Fibrosis blogs out there. The title of the blog is A Matter of Life and Breath and was created by a spunky, smart and hip NYC lawyer named Piper, who just happens to have CF. The way she writes will draw you in right away and keep you coming back for more. This particular post that I'm highlighting was called "Public Service Announcement" and was Piper's way of letting off a little steam during the Swine Flu epidemic. Many of us CFers have the same problem, we cough (A LOT) in public. When there is an epidemic such as H1N1 virus going around, you would never believe all of the stares that we get. I've had MULTIPLE times that people at the gym would move away from me to "get away from the sick guy". I encourage you to go by Piper's blog and check out a bunch of her posts- it will keep you entertained for quite a while. With out further ado:

Public Service Announcement

Good news New York: I don't have swine flu!

That's right, there are, in fact, people who cough in daily life who are not currently infected with some deadly farm animal virus. I know that's hard to believe right now, but please take a moment to pause from your hysteria and realize that among all you "normal" people lives a whole slew of "coughers" - from asthmatics to CFers to, I dunno, people who just swallowed some milk wrong or something.

Now don't get me wrong, I'm not offended when you jump in fright at my well-covered and (relatively) discreet public coughing fits. (The "relatively" there is b/c BELIEVE ME, if I was willing to really let them out these coughing sprees would seriously rock your world.) I'm not at all surprised or insulted when you just happen to feel the urge to switch checkout lines at Whole Foods or subway cars on the 2 train right after I give you a glimpse of my cysticness. I don't even particularly mind when you warn your child, rather loudly in my opinion, not to pet my dog because "the lady is sick and her doggy might have ugly germs." (That's right: "ugly germs." I assume this does not refer to germs that might actually make someone ugly, but then again what do I know?)

Nope, I get all that. As so many of you seem to have noticed, I myself am a "sick" person. And as a sick person, I get the urge to protect oneself and one's family from nasty pig bugs (or even "ugly" bugs, for that matter). In fact, if I hear YOU coughing, I'm also likely to try and put a little distance between us. The difference being that I'll most likely go out of my way to be discreet and polite about it, but then again maybe that's only because glaring at strangers doesn't seem to be a natural part of my personality.

But again, just to put your mind at ease, and in case you didn't hear me the first time: I DO NOT HAVE SWINE FLU. Or even human flu. And if I did I would know it, because I spend more time in the doctor's office in about a month than you probably do in an entire year. And if I for some reason did start running symptoms of the flu, I would stay home. Not just now, when the dreaded porker prognosis is sweeping the nation, but everyday. It's just how I was raised.

So rest assured. True, the cause of my cough is about a million times more fatal than swine flu and receives far less national attention, but you can't catch it. And that's all that really matters, right?

So do you guys know what she's talking about? Have any experience with this? Let me hear your "death stare" stories...

...and go give Piper some love!