Saturday, March 20, 2010

Eastern European CF Statistics

Call for European Cystic Fibrosis healthcare gap to be closed

A healthcare gap amounting to a ‘death sentence’ forCystic Fibrosis (CF) children born in Eastern Europe must be closed say researchers from the EuroCareCF Coordination Action for Cystic Fibrosis. A new study led by the University of Dundee and published today in The Lancet, has found that CF patients in Eastern European countries die far younger than in other, wealthier, EU countries.

EuroCareCF, led by Dr David Sheppard of the University of Bristol, provided a forum for groups from all over Europe to collaborate to improve the quality of life and life expectancy of individuals with CF. As part of this collaboration, Dr Anil Mehta of the University of Dundee led a team from 35 countries that examined outcomes for almost 30,000 CF sufferers born in long-standing European Union member states compared to those born in countries who joined after expansion in 2003. The resulting paper shows that despite similar population sizes and underlying gene frequencies for CF, the numbers of CF-affected children were lower in post-expansion EU member states. Dr Mehta says this disparity can most likely be explained by the tragic fact that a lack of healthcare facilities in new member states means that the majority of children born with CF in these countries will die in very early childhood, a situation not encountered in the wealthier EU countries for many decades. “We know that this disease occurs randomly in about 1 in 4,000 children born to healthy parents across the EU,” he said. “Despite this, the team encountered many fewer people with CF in poorer countries. CF patients there die far younger than in long standing EU countries.”

Nick Fahy, head of the health information unit in the Health and Consumers Directorate General at the European Commission, said, “Knowledge is key to improving health in Europe. For these rare diseases, there are so few centres of expertise that only by working together across the EU can we enable all citizens to have access to the best possible care. “This European cooperation also shows member states how they compare to best practice in Europe for different conditions, so that every health system can prioritise their resources to meet the needs of their patients."

Cystic fibrosis is an inherited chronic disease that affects many organs, particularly the lungs and digestive system. CF patients carry a defective gene that disrupts the transport of salt across cell borders. As a result, the body produces thick mucus that blocks ducts and tubes. Blockage of air passageways causes chronic cough and lung infection; blockage of the pancreasprevents enzyme delivery to the intestine to break down food; and blockage in the intestine prevents food absorption. Countries in Western Europe have committed significant resources to making the necessary treatment available to CF sufferers, helping them to live longer and fuller lives.

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Friday, March 19, 2010

There Will Be Blood

Yesterday was a good day! It started off with a morning walk in which I painted the city streets gold with my mucus (although it was actually pretty clear). I can't stress enough how good it feels to get a walk in first thing in the morning. I know I sound like a broken record to you regular readers, but if you're thinking about starting an exercise program to improve your lung function, start there! You'll never cough up so much mucus!! I was just chatting with a fibro over on CysticLife who just made a morning bike ride part of his routine and he is AMAZED at the difference in how he feels the rest of the day. I just think it's so important to get the mucus up and out that has just been sitting there as you sleep at night!

Jezzabel and I also had a great time down at the wash! It was hotter than normal so she didn't have her usual stamina, but it was still a good time. We did a couple of sprints together and then apart from her trying to chase down a bird, it was pretty uneventful. Actually, I just thought of something. While in the wash I picked off a cuticle from my right pinky finger. It proceeded to bleed like CRAZY. We're talking blood dripping from my finger crazy! Anyway, I made my way back up to Mandi's house and proceeded to convince her and her mom that I had gotten bit by a snake while trying to protect JBell. They bought it hook, line and sinker.

Finally, I wrapped the day up with a nice run. It felt 1,000,000 times better than yesterday, but it was not without a slight hitch. My lungs felt great. My legs felt great. And I was keeping a nice pace. Problem was, about a mile into the run I had a very hard cough that ended up producing some blood. I kept running to make sure it wasn't a fluke, but after 3 more gobs of blood and mucus came up, I decided to slow it down to a walk. Hey, it happens. No reason to panic or get upset. I just made sure that I continued to cough until all of the blood was cleared and then I'll be back on the road tomorrow. This is just one of those times not to make a mountain out of a mole hill. Blood happens. Deal with it and then move on :)

Thanks again for all of the encourage words yesterday guys!! It really pumps me up and motivates me to get all of my workouts in!

Thursday, March 18, 2010

Memories of Gma and High FEV1!!

Wow, I have so much to be thankful for on this Thankful Thursday post. Here's what it at the top of my list:

-Seeing my grandma reach her 80th year!! Let's face it, that's OLD. I've said many times that thinking about living that long actually makes me tired :), but now that I'll be married to a gal that would literally kill me if I died, I better change my plans! For my gma's 80th birthday, many of us sent her letters detailing fond memories that we have of her. I had two that came immediately to mind: playing baseball in her cul-de-sac and blowing on a noise maker with her. As far as baseball goes, I remember being amazed as a little kid that my grandma could actually hit the ball, but what blew my mind was when she ran the bases! She was ALWAYS down for a game outside and always willing to entertain all 13 of us grandchildren. My second memory is probably the most special cause it is one only shared between my gma and I. The dreaded noise maker. She had this little plastic thingy that when blown into would make a really crazy noise that always made her laugh. It didn't have the same effect on me however as it made me cough, but that was always followed by laughing in response to my gma's laugh which would in turn make me cough again. Follow that? Anybody notice what she was really doing? That's right, I was doing a treatment without ever realizing it! I would do it literally EVERY TIME I went to my gma's house which was often. She's sneaky, but she sure does love me :)

-I'm also thankful for all of the support shown to me the last couple of days on this blog and facebook. I asked for some accountability partners and that's exactly what I got! And I'm proud to report that although I was traveling all day and was very tired when I got home, I still managed to get a run in. I'm sure that I would not have done it if it had not been for all of the encouraging messages and comments. I can't thank all of you enough for that! Oh and on a separate but related note, I blew my highest FEV1 (69%) since July of 2007!! WOOT WOOT!!

Wednesday, March 17, 2010

Need Accountability Partners

Hello friends!! Well, we've made it to workout Wednesday in another great week in the world of Sickboy. But I do have a confession, working out could certainly be going better. I haven't gone on a run this week and we haven't made it to the gym either. Thing is, I can't really put my finger on the problem. I can't say it's time as I've managed to get a morning walk and a wash "workout" with Jezzabel happen every day. I can't say it's energy as I've felt pretty good lately and although I know I'm not at the top of my game, I have no excuse for what's been happening. And finally, I can't say it's motivation as I have a wedding coming up to the most beautiful bride in the world for which I want to be in great shape for. I think when it comes down to it, I really need to start focusing on factor number three.

As many of you know, the next handful of months are going to be very busy around here. We have travel, hospital stays, weddings and honeymoons to get to. I of course need to make sure that my health comes first if I want to enjoy all of those things to their full capacity. We made it our goal to hopefully avoid a 30 day hospital stay this next time so I would have a little bit before the wedding for last minute preparations. I also didn't want to cut it too close as it generally takes me a bit to recover from my time in The Hole. I know that the healthier I go into the hospital, the healthier (and quicker) I'll come out. You would think that would be all the motivation that I would need. Well, evidently it's not. That however ends today.

I need your help though. I need you guys to call me out and hold me accountable. Leave me comments. Post on my Facebook. Email me. Call me. Whatever me. I know that if some of you guys hold me to it, it will make me even that more fired up to get it done. It's great to have some accountability partners when it comes to life, exercise, work etc. Luckily for me, I feel like I have hundreds and I know that's exactly what I need.

PS- HAPPY 80th BIRTHDAY GRANDMA!!!!!!!!!!!!!!

Tuesday, March 16, 2010

Where Should We Go on Our Honeymoon?

*Post written by Mandi - Mandi Monday has bled into Top Ten Tuesday.

The wedding planning is coming along, but we are really down to the wire when it comes to booking a honeymoon. We are all over the place when it comes to what we want. We know we want to go somewhere beachy because we'd like to just be able to relax and lay around. We wouldn't mind doing a few "off-campus" adventures, so it would be nice to go somewhere that had little excursions, like zip-lining or snorkeling also. Also, we would like somewhere that the flight from AZ is relatively short and inexpensive. So that's what we know, but when it comes to how much we want to spend, we fluctuate. Do we go really cheap and figure it's just a week? Or do we go nicer since we only get one honeymoon? Do we go all inclusive or do we not? Do we go to Mexico, the Caribbean, or somewhere totally different?

This is where you all come in. We would LOVE some input. We've wanted to to book our honeymoon for weeks and just can't pull the trigger because we're too indecisive. But we have to book it THIS WEEK. So please please please tell us about the good and bad trips you've gone on, resorts you've stayed in, etc. We have had some GREAT suggestions thus far, but want a little more insight before taking the plunge.


Monday, March 15, 2010

Treatment Time

I know there are plenty of CFers (and probably a good handful of CF family members and significant others) that hate treatments, and I get that. 2-4 times a day, you have to stop what you're doing, sit down, stick a neb in your mouth, and strap on your vest. When you're spending the day somewhere, you have to debate whether to skip a treatment or bring your treatments with you (which includes packing and unpacking cords, nebs, machines, meds, etc etc etc). Man, what a nuisance, huh?

I, for a while, was annoyed by Ronnie's treatments. I didn't like that we would have to go home sometimes in the middle of the day because he was feeling junky. And I still, at times, find myself being perturbed by the fact that Ronnie has to do 4 treatments a day, totaling nearly 4 hours a day. 4 hours away from time spent with me, right? WRONG! Not necessarily. Not if you fill the time right.

Ronnie and I have found a lot of fun things to fill treatment time with. We have found TV shows that you don't need sound for, like House Hunters or Property Virgins on HGTV (and actually, most HGTV shows are good sans sound). We plug headphones into a computer, each taking an ear bud, and listen to funny segments of a radio show in town. We sit at the table and play card games, Skipbo is our favorite. Ronnie will catch up on games that were on throughout the day, and I'll let the shaking of the vest "rock" me to sleep on his shoulder. We'll both pull out our laptops and play around on the internet; he'll do his blog, I'll stalk people on Facebook (shameful, I know). We'll catch up on email or get in an extra hour of work. We'll download a hidden object game (, check it out).

Regardless of what it is, we use the time to be productive or to enjoy each other's company. I've realized that instead of it being "time out of the day", it can become a good excuse to spend quality time together. I've actually come to like Ronnie's treatments (just a little bit) and have started referring to it as "treatment time". Next upgrade to treatment time? We've decided we're going to get wireless headphones so we can watch TV shows WITH sound. WOOT WOOT!

What do you do during treatment time? Give us some more ideas :)

Sunday, March 14, 2010

Discovery May Lead To New Cystic Fibrosis Treatments

PR Log (Press Release)Mar 11, 2010 – Discovery may lead to new cystic fibrosis treatments

A new discovery may give hope to the thousands of cystic fibrosis sufferers around the world.

According to a research team from the University of California, San Diego School of Medicine, they have identified a defective signalling pathway which increases the severity of cystic fibrosis, a condition which affects one in 2,400 people in the UK, and of which four per cent of the population are carriers.

In the report, published in the February 14th edition of the journal Nature Medicine, lead investigator Dr Gregory Harmon and study supervisor Dr Christopher Glass, professor of cellular and molecular medicine at the facility, say that the discovery may be able to significantly reduce symptoms in sufferers.

The specialists revealed that defective signalling for a protein called the peroxisome proliferator-activated receptor-y (PPAR-y) accounts for a portion of disease symptoms in cystic fibrosis, and that the correction of the defective pathway reduces symptoms of the disease in mice.

Dr Harmon pointed out that cystic fibrosis results from a genetic mutation in a membrane pore that facilitates the transport of chloride and bicarbonate electrolytes from inside the cell to the spaces outside the cell.

He added: "Loss of the cystic fibrosis pore channel results in inflammation and mucus accumulation. It also results in dehydration of the cell surfaces that make up the lining spaces inside the lungs and other affected organs, such as the intestinal tract."

Dr Harmon revealed that the fact a drug may be able to activate bicarbonate transport without affecting chloride transport is what could result in an improvement in the disease.

"The finding of the reduced PPAR-y activating prostaglandin in cystic fibrosis is exciting since it could serve as a marker to identify which patients might benefit from treatment," the expert concluded.

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