11 Week Ultrasound

Just recently we went in for our 11 week ultrasound. I don't think Peanut was too happy that we were disturbing him/her and it took some "encouragement" to get him/her moving! Make sure you watch around the 6 min mark to really see some action in the womb :)

Thankful Thursday - Birthdays & Movement

Know what time it is? 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. as I mentioned, I no longer have the "linky tools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for time with family. After our trip to the CF Family Education day in Syracuse, NY, we were able to tack on a quick trip to Connecticut for my Great Aunt's 90th birthday. I was able to spend time with my parents (they flew in from China), Grandpa, Great Aunt, and a slew of family I haven't seen in 14 years - literally. It was so great to spend time with family and I was thrilled that my parents were there.

I'm thankful that yesterday's ultrasound went well. I'm 11 weeks and 2 days pregnant today, and I'm almost through the 1st trimester. I get so nervous before each ultrasound; scared I won't see a heartbeat. But I am so thankful that peanut's heart was beating, s/he was moving all over the place, and all is looking great. I feel so blessed to have gotten pregnant our first IVF cycle, but I feel even more blessed that God has continued the pregnant and kept peanut growing and healthy. I am so thankful for this little being growing in my belly.

I'm thankful for yogurt and frozen blueberries. I used to eat this combo all the time, and I haven't had it in awhile. Well yesterday I had the combo again, and oh my goodness did it taste yummy!! I am definitely having that combo daily. I am so thankful for yummy snacks/food. We are so blessed that we never have to stress about where our next meal is coming from (I can't imagine being pregnant in those circumstances). We are so fortunate to not only have food available to us, but to have yummy food that we eat just being we like the taste.

Ronnie's List:

I'm so thankful for peanut's progress. We just had another ultrasound yesterday and everything looks great. S/he got a little ornery and started kicking Mandi's uterus like crazy and as we say around here, any movement is good movement. We'll post the ultrasound video soon, but if you'd like a sneak peak, check out our Youtube account.

I'm very thankful that I got to spend some time with Mandi's family this past weekend. I was able to be part of her great aunt's 90th birthday party which was truly incredible. Some of her extended family were there also, so it was a joy meeting a bunch of aunts, uncles, cousins, 2nd cousins and so on. The birthday party was in Connecticut so I'm also thankful for the great weather in Phoenix.

I'm thankful that I got to meet some fellow CF community members in Syracuse last week. It's one thing to email and chat online, but it's a whole other thing to actually meet face-to-face. What else was cool was the fact that two of our community members introduced me before I spoke and what they had to say brought me to tears (I didn't actually cry, but I got choked up). They're the exact reason I get out of bed everyday and try to move the ball forward.

So, what are you thankful for today?

MRSA and Cystic Fibrosis

Here's another question from a reader that I thought most of you would find interesting. MRSA and other types of bugs are always a hot topic in our community so I figured it would be helpful to share this exchange. Remember when reading this that I am not a doctor (far from it) and I'm only sharing what has been told to me and what I've experienced.

I know from your blogs that you have MRSA. A dr just called and told me my son's last culture came back positive for it. :( What the hell does this mean for him? He was sick w/ a viral thing about a month ago and aftert a couple of weeks he was put on Sulfa and it seemed to work for a little bit but then his drainage turned back to green so our family dr (his cf dr was out that day) put him on Zithromax. That seemed to do the trick. Well, apparently, the fact that he didnt respond to the Sulfa made the cf doc suspicious and asked that we do a culture last Friday even tho we have a clinic tomorrow. He said we will treat him aggressively w/ antibiotics and hope that we can get rid of it? I thought once you have it you always have it? I am so confused...he also mentioned doing bleach baths?? WTH?? I thought it was transmitted thru blood but he said no mostly mucus, like snot? What do you think/know about this?? I dont even want to tell our family he tested positive (but I guess I have to to protect their kids from it?) b/c I dont want my son to be treated like he has the plague. Crap.

I'll try to answer your questions best I can and in order :)

We're not sure what it means. Some doctors will say that MRSA has no known long term effects on lung function while some believe that it can present a problem.

Treating aggressively is a good thing. Obviously not having it is better than having it.

The longer you have MRSA the less likely it is to go away. Treating early and often is key. You can get rid of it.

Never heard of bleach baths. When you find out what that is, let me know.

You may be thinking of MRSA/Staph found on the skin as far as the blood goes. This is different. It's actually found in many people's nostrils but because they have a normal mucociliary clearance system, it never gets to the lungs. It can be transmitted to other CFers via sneeze, cough, mucus, boogers etc.

You don't have to worry AT ALL about others in the family. I've talked at length with my doctors about this and the chance to "pass this on" at any level (to non-CFers) is very very little. I've asked about old people, babies, etc and they said not to worry. In theory, anything is possible. but getting others sick with our MRSA is very improbable. Think about it, Mandi would be sick! She's fine :)

Don't freak out mama. Encourage them to be aggressive and then hold on for the ride :)

I guess I better make my list of questions for his clinic tomorrow. Dr said that the bleach baths have be proven to help rid of the MRSA. I asked "why, is the bacteria on the skin?" and he said yes, it can be. Now, you say that is a different kind of MRSA? There are two kinds? He did mention it being a type of a staph. So maybe he doesnt have the same MRSA as you have? I know he didnt have it at his last clinic which was Feb 8, that culture came back negative for everything tested.

Weird thing to me is that he is fine right now, no symptoms of any sort. And his CF doc told me today that the zithromax wouldnt have gotten rid of the MRSA (obviously, seeing his tested positive after taking it) but my point being if he didnt have CF or it was one of my other kids, if they no longer had cold symptoms or any other symptoms I wouldnt think to have them be tested for anything else. And guessing neither would the dr. He mentioned that some carry the bacteria and are not symptomatic. Maybe he got it from one of us? I guess we'll all be getting tested for this:(

Oh Ronnie, do you cringe when you see you have mail from me??!! I am a treat aren't I?

There is stuff that they had me wash with when I first had MRSA, but I think it was only a nasal wash.

Generally speaking, if you hear about it on the skin, it's staph, not MRSA. We both have it in our lungs and it's the same bug. And it gets confusing, but MRSA is staph, but a staph that is resistant to the drug they usually use to treat staph. CFers can get both staph and MRSA in the lungs.

I don't feel any different since getting MRSA (2003) and my lung function hasn't declined because of it. I don't have increased exacerbations either. My doctors have never given my MRSA a second thought and don't seem to think it's a big deal.

You don't have to worry about having your family tested.

Keep the questions coming, that's why I'm here :)

But what if we carry it and we're the ones who gave it to him? Or would he have had to have gotten it from another CFer? Who knows, I suppose. I'll have to have the Dr clarify all this for me tomorrow. My son started on both the antibiotics they prescribed for him tonight already. Poor guy, one of them smells and probably tastes too, like cat urine. Dr warned me about that one. Real fun part is he has to have that one 3x's/day for 10 days. The other one, the yummy one, only 1x/day for 10 days. Nice.

So the MRSA you have doesnt cause the skin boils or anything? It's just a bacteria in your nose/snot? How did you find out you had it?

You can certainly try and take steps to prevent yourself from "passing it on" to your son, but I have a feeling that the doc will say that there isn't much you can do. It would be really hard to track down how the MRSA got to him and you'd probably drive yourself silly thinking of it. It's there now and all you can do is try to eradicate it the best that you can.

I've had the cat urine drug...wait until he starts marking the corner of your living room...just kidding.

MRSA will not cause skin boils. You have to think of our lungs and our skin as two different ecosystems if you will. MRSA in the lungs is a completely different ball game than MRSA/Staph on an open wound in your skin. I've asked the doctors before if I could cough on an open wound on my body and infect it with MRSA. Their answer: In theory it is possible, but very improbable.

I cultured MRSA after a routine sputum culture during one of my many hospitalizations. [END]

Hope you guys were able to get something from that! If you ever have any questions that come to mind, please don't ever hesitate to contact me by email or through CysticLife or Facebook.

Slacker Monday?

Please excuse the interruption to the regularly scheduled blogging. Today, instead of it being a legit Mandi Monday Blog, I give you a Slacker Mandi Monday Blog.

We had a great weekend in Syracuse, NY and we drove to Cromwell, CT to spend my great aunt's 90th birthday. We are spending today, Monday, with my parents (who also flew here to be here for the festivities), therefore, I spent yesterday and today NOT doing a real blog. However, we will fill you in on all the fun when we're home :)

Just a quick update, our little peanut is still doing well and we will get to see it on Wednesday during an ultrasound - needless to say, I can't wait. I want to see my little munchkin kicking and wiggling all over the place. Plus, I'm pretty sure it must really look like a human now. Still no real belly, but we'll post shots soon.

Sorry for being a slacker, but I assure you that I will not keep it up :)

Is Exercise for CFers Different?

I've had this question posed to me more than a hand full of times both on Facebook and CysticLife, so I thought I would answer it here as well as pull some quotes by other very knowledgeable cysters and fibros. The following question was posed by a fellow cyster and to be honest, I was a little bit shocked by her doctors attitude (although he may have had the best of intentions):

Okay, so whenever I think of excersize, I typically think of going to the gym, riding a bike, jogging, or doing something with a little sweat suit on. Basically, getting strenious excersize. So I told my doctor that I get totally short of breath when I do things like that, and on a bad day it's even hard for me to climb up my stairs at my apartment. So he told me that excersize for us, is basically something that gets your airways stretching and get's you huffing a little hard... And that if we are excersizing to the point of us laying on the floor sucking on our inhalers (which I have done, lol), we are actually probably doing more damage than we are helping ourselves. What do you guys do as far as a 'light load' of excersize, that gets your airways flowing, but doesn't make you totally SOB and have to sit down? I find it hard... Maybe it's just me.

The following was my answer to her:

I think it's important to understand that EVERYBODY sucks a little wind when exercising, especially those of us who are out of shape. I agree with your doctor to a point, but I myself wouldn't accept not striving to exercise like everybody else.

When I recommitted myself to exercising, last year, I couldn't jog 1 minute with out stopping. I got on a running program and in 10 weeks ran 3 miles. It's important to go at your own pace, but to also set yourself a goal and then set out to accomplish this.

It's also important to point out the benefits of exercise to lung health. Last January my FEV1 was in the 20's, I then recommitted to exercise and by October had my FEV1 up to 68%, the highest since 2005!!!

That's what I think is SO important for every cyster and fibro out there to understand, Exercise is tough for everyone, especially when just starting out. Think about it, why else would there be so many people out there that say exercise is their New Year's resolution, EVERY year. It's tough. It's NOT EASY to stick with. And yes, it may be tougher for those of us with CF, but the case can easily be made that it's also more valuable. I've never ever met a fellow CFer that regretted exercising. It's quite the opposite, they're ecstatic. To put it simply, do you find more joy when you accomplish something that took no work or sacrifice or something that took a ton of it?

I like how this fellow fibro put it (who by the way is training for an Ironman):

Even though we have CF we can still do anything anybody else can do our training is just going to be a little harder and we'll have to train a little longer, but we can do it. The biggest thing you have to learn is patience when it comes to endurance with exercise it takes us a little longer to build it up. Stick with exercise, it will only benefit you.

He's so right. We CAN do anything if we set our mind to it. It's often times just a case of setting a goal and doing absolutely everything to accomplish that goal. Don't let setbacks discourage you either, use them as motivation to propel you forward on your mission. Listen, there's days that I just can't drag my lazy butt out to run. It happens. But when it does, I make sure to really step it up the following days to "make up" for the time lost. We have a tendency to allow one bump in the road become an impossible obstacle and it doesn't have to be that way. Get over the bump and then put the pedal to the metal.

My dear friend...

I'm taking this day off of blogging to honor one of my best friends in the CF community.

We'll miss you Marisa and I promise that I will never forget the great times we had together. That first embrace with your sister must have been amazing :)

Question from a reader: Why Parents?

Ever so often, I like to share questions from readers and my answer to them here on the blog. This particular question I get asked quite often, so I figured I would share my answer with all of you.

You seem to direct a lot of your "messages" to parent's of CFers, is there any particular reason why?

So I guess I’ll first talk a bit about why I’m so passionate about CF parents. I truly believe that everything starts with the parents and the sooner we can deliver a message of hope, proactivity and confidence as well as messages like "treat your CF child like you would any other non-CF child" the sooner we can start to shape that child's experience of CF. The sooner we can get parents to buy into that I think, ultimately, the healthier our community will be and that’s what we all want.

I’ve been fortunate in that I've been able to meet so many parents and CFers within the CF community. It is my experience that 99/100 times the child’s attitude toward cystic fibrosis is a 100% true reflection of the parents attitude toward cystic fibrosis. What I mean by that is I have met parents who are very bitter, angry and play the role of the victim very well and wouldn't you know it, I then meet their son or daughter and they are the exact same way. I can tell you as a patient that when you fall into the trap of being a victim or being bitter and angry, unless you are able to harness that into a positive reaction (which most people simply can’t do), it’s very hard to have the energy to really live your life. A pessimistic attitude and a victim's mentality will more likely than not affect your health in a negative way. This isn't just my opinion either, research is constantly coming out that supports this "theory".

Let me give you a real example of this. I was reading through a study a couple of days ago that showed those in the CF community who felt like they were in control of their disease were more likely to exercise. We can debate what came first, the chicken or the egg all day, but I know that this has a direct correlation in my life. One reason I exercise the way that I do is because I truly believe that it has a positive effect on my health and my lung function. When I exercise and do my treatments regularly I feel better and my lung function remains steady (I'll take anything but down!) or goes up. Conversely, when I slack on exercise or treatments, I feel worse and my lung function goes down. Can you see how this can make me feel like I have some control over this disease? Of course my question would be, is it just a feeling or am I actually exhibiting some control? In other words, am I just getting lucky? Like my "good friend" Larry Bird said, "Seems like the harder I work, the luckier I get".

You can call it ignorance or you can call me naive, but I would like to think that the proof is in the pudding. I’ve been sick at times, I’ve been really sick at times, but I never believed that I had lost control and I always believed that I could "get it back". When my doctors would say "this is probably your new baseline" it only motivated me to take a step back, assess what I could be doing better and then work harder going forward.

I really think that if we can get parents to buy into this way of thinking early on and ingrain this attitude, from a very early age into their children, some very positive things can happen. We do have some control over this. Things aren’t always going to go our way, but we have to make sure we wake up every single day and do everything we can to stay one step ahead of this disease. I can say without a shadow of a doubt that CF never takes a day off and so either can I.

I have such a heart for CF parents not only because of that initial shock of getting this diagnosis, but because of the first thing they do, Google it. I really want to change the message that they first find. When a parent newly diagnosed family Googles CF I don’t want them going to sites that are doom and gloom and depressing. I want them going to sites like Run, Sickboy, Run or CysticLife.org and be able to comb through those sites and say "hey there’s hope and we can do something about this". From that point on I would expect them to realize that there are great meds out there and great plans of action, which, if implemented and stuck with, can provide great results and excellent health.

So why do I really like to deliver my message to CF parents? Well, it's because I have a big heart for CF parents and I love the CF community and want all of us to be as healthy as possible, and whether the parents like it or not, it starts with them. No pressure :)

Tuesday's Tidbits: 18% & Taxes

We just got back from doing our taxes, my brain is a bit fried so I won't be launching into any long and thoughtful blog today. There are a few things however I can rant about and also a few updates for ya.

Getting back to taxes, seriously, what is with those things? I won't turn this into some big political debate, but taxes are something that I don't think I'll ever fully endorse. It's not because of the money or because of the huge brain freeze that it gives me, it's because I just can't trust a system that not one single person on earth truly understands. We had the sweetest lady helping us out this year with our taxes and although she was very knowledgeable, there were still plenty of things she was a little unsure about. I mean take one look at the tax code and you'll see why there isn't anybody on this planet that can ever claim to be an “expert”.

My foot is getting better but I'm still not to the point that I trust myself to run on it. For those of you that don't know, I injured my foot last week during a long run in which I've never fully recovered. I've been trying to take it easy and stay off of it best that I can and avoid any exercises that pounds on my foot. I'm doing the exercise bike a lot and have managed to get a couple good walks him. I'm really hoping that it continues to get better because I haven't been able to run for over a week and it is starting to get annoying.

I can't think of many things that I've enjoyed hearing more than my little peanut's heartbeat. We're fortunate that we've been able to see his/her heart beating almost every week now, but we've never been able to actually hear it. Well yesterday we had our first belly ultrasound and I was able to listen in on the music that the little peanut is creating. I wish you guys could of seen my face (this will be impossible however because they don't allow videotaping), but I can assure you that I had a smile from ear-to-ear.

I've been keeping up with gardening so far and I've got to tell you every time I go in the Home Depot I never walk out empty-handed. I must have some type of spray for just about any problem that could ever present itself in my "luscious" garden. I don't read too often, but I even picked up a book solely about gardening in the deserts of the Southwest. It's called "Extreme Gardening" and so far I've been able to pick up a couple of tips that I've actually put into practice.

I really feel for Butler University. I mean I was really sad when U of A lost to Connecticut last week, but I took comfort in the fact that the Cats overachieved and were really playing with house money. I also gave up the excuse that we picked a bad night to have our worst shooting performance of the year. I'm now convinced that it wasn't us playing bad offense, but it was Connecticut playing solid defense. They absolutely smothered Butler tonight with their stingy defense and forced Butler to shoot a season-low 18% from the field (which by the way as I understand it is the second worst shooting performance in the history of the tournament). So congratulations Connecticut, you guys deserve it and I promise to get rid of my Jim Colhoun voodoo doll.

Well, that's all I've got tonight. Have to hop on a treatment and go nighty night!

Top 5 Snacks for a Grazer

This blog is totally random. Well random for you all reading this, but not that random for me - since I've become even more of a grazer and I seem to think about food ALL the time.

I've never been a 3 meal a day kind of gal. I'm more a big breakfast, small lunch, HUGE snack, small-ish dinner - with a few tiny little snacks mixed in (like a handful of grapes or chocolate chips). So I figured I'd share some of my favorite snacks, maybe it'll help some of my fellow grazers switch up their grazin' grub. There are some my bigger snacks...sometimes even made as my lunch.

1. Apples, PB, mini-marshmallows - This is a favorite and probably why it came to mind first. I slice an apple, measure out 2 tablespoons of peanut butter, and grab a serving of mini-marshmallows. Then you dip the apple in PB, stick a marshmallow on it, take a bite, and repeat. A little fruit, a little protein, and a little sweet (for those of us who need some sweetness multiple times a day).

2. Veggies and hummus - This certainly isn't original, but it's a favorite. I love taking a couple tablespoons of hummus (garlic and roasted red pepper are my fav) and dipping any sort of veggie in it. Most of the time I go with baby carrots, cucumber peppers or celery. If I'm really into hummus but not so into the veggies on a particular day, I'll dip pretzels into the hummus.

3. English muffin, PB, banana - This is another good way to satisfy my sweet tooth. I toast 1/2 a cinnamon raisin english muffin, spread 1 tablespoon of PB on it, and then cut up 1/2 a banana on top. I'm now realizing that a lot of my snacks include peanut butter.

4. Yogurt and frozen blueberries - This makes for a yummy summer snack, as it's a nice substitute for ice cream. I take yogurt (Dannon Light & Fit) and mix in a 1/2 cup of frozen blueberries (still frozen). As you mix and let it sit for a few seconds, the yogurt coats, and slight hardens, around the blueberries. Occasionally I'll add some cereal, like Life or Kashi Go Lean Crunch.

5. Edamame - aka soy beans - We buy individual serving bags of frozen edamame and I devour them. All you have to do is throw the bag in the microwave and in a few minutes it's ready to eat. I love covering them in salt or dipping them in soy sauce - sometimes both.

Some of these snacks are a little more common than others. Some are easier to make than others. But one this is for sure, if you've never tried them, I highly recommend them. Have a favorite I haven't mentioned? Hook me up with your suggestions!

Walter's Story: Exercise & Cystic Fibrosis

Why am I 45 years old with Cystic Fibrosis? I was told I’d be lucky to see out my teens. Exercise has always played a big role in my life, and most likely is the reason why I am still in the land of the living.

My parents weren’t great sports fanatics, and I wasn’t much good at any sport. In fact I was always last to be chosen for any school team. I was the smallest in my class for most of my teens. I did love riding my bicycle to high school in Holland, 10kms each way! My parents could not get me to go in the bus, as I would always prefer to ride at high speed (with my neighbour) on the Dutch bicycle paths.

Once we immigrated to Australia, when I was 13, my family adopted an Irish Setter. I ran with it every day. In my late teens I also had a job as a milk-runner; delivering milk to peoples doorsteps from the back of a truck. I ran with ‘little athletics’, walked in the mountains with the FBI (Family Bushwalkers Incorporated), I did lots of outdoors activities with school such as hiking and caving.

Never was I very competitive, not ever did I need or want to come first in anything. My aim was to be outdoors and having fun. I don’t have a competitive bone in my body in fact. This also meant I didn’t have too many sport injuries in life. Even when I ran in marathons, half marathons and tri and duathlons I would only ever go in them for fun and just to finish them. I would cough so much during those events that people would regularly ask me if I was OK. My standard answer was; ‘Yes mate, I’ve coughed this distance before’. Swimming was the hardest for me. Maybe because in public pools it was not acceptable to cough and spit, so my training was limited there.

For me the exciting thing about exercise was variety. The more the better. I am easily bored, so I always tried new things. Loved roller blading, which I did with my mates on Sunday afternoons on an abandoned school play-ground. During the week, one of us bladers would sometimes find an adrenaline filled and mostly downhill course of 10-20 kms. When I was in my late twenties I beat the scuba diving medical test (by telling them I was a heavy smoker!) and started diving. After about 200 dives over maybe 5 years I realised how stupid I had been, or how lucky not to have had a pneumothorax! I was able to comfortably have huge coughing fits 20 meters under water, and even got my Advanced Open Water Padi certification. I still enjoy snorkelling, but when snorkelling I need a flotation device for when I cough, unlike when diving with a regulator in your mouth and a BCD (Buoyancy Control Device) keeping you steady.

Fun runs and community sporting events are always the most fun. Usually they have good prizes, and I often score an encouragement reward (and CF awareness!), or for having travelled the furthest to be there. And yes, sometimes I even end up first in my division (when I happen to be the only one in it!), like with Orienteering recently!

Last weekend I cycled in a big charity bicycle ride and I thought it was more of a social ride. Low and behold it was full of fancy gear road riders and I rode the entire distance on my own. I was the only one who brought lunch and snacks, and had a great ride on my own up the back.

Skiing is another great sport I loved doing. Although a little expensive now, I discovered that by doing cross country or trying out snow boards you don’t need the expensive full lift passes. I also discovered that if you rent a snow board they happily change it for cross country skis after lunch. When I was under 18 there were loads of affordable skiing offers for minors, complete with bus and lift tickets. I had rock-hoppers (old skis) that were so rough that I had no qualms about skiing down rocky patches, and got a ‘Wally of the Year’ award for skiing Thredbo from top to bottom when there was only half cover – with sparks. I had a lot of fun!

All through my life I have stayed relatively healthy mostly through sports and adventures, but of course my lungs have declined and are dipping towards the 40% of predicted FEV1. I still ride my bicycle everyday to and from my 2 hours a day desk-job, and try and do a daily ‘proper’ exercise (walk in the hills for an hour or so). I regularly take the kayak out for a paddle or go into the mountains, jog around the beach or play with the Wii inside. When I am lucky someone invites me to go sailing or mountain climbing, but mostly I do more accessible sports.

For work I have a casual office job where I do IT and Admin support for 2 hours a day in town, close enough to commute on the bicycle. I also do some freelance computer work which I can do from my laptop and I waste an awful lot of time doing just ‘stuff’ on the computer, mostly voluntary web work, blogs, and trying to write a second book. There is never enough time in my day as you can imagine, I also do a lot of volunteering where I can. A member of the local Lions group, and a Friend of the Lillico Penguins (a nearby colony of little penguins), help with bird counts and wherever people can use my help,...

And CF? Yes, that is a job on its own. Doing a thorough saline neb in the morning with huffs, puffs and flutter takes me a good hour, again at night with Pulmozyne too. My girlfriend ensures I never go hungry, feeding me day and night, and making sure I don’t forget anything (a huge job!), from Calcium tablets to insulin, reminding me to take my enzymes, my keys and my lunch. She comes with me on many of my exercises, including running with the Hash House Harriers (probably my most favourite exercise as it includes a beer or three), coming to Hobart to the CF Clinic, collecting for CF on 65 Roses day,... I think CF is team work, and we keep each other motivated. A while ago I took a cruise with my 77 year old mother (for her birthday), but even there I woke up at 6am every day to get to the ship’s gym for the onboard boot-camp classes, and on the island stops still managed to abseil down a waterfall... Never stop exercising!

I like to keep adventures on the horizon, like in the past when I rode across Europe (www.coughingthedistance.com), or last year when I climbed Mount Kinabalu (www.coughing4cf.com) and next year I am hoping to do the El Camino trail, a 6-week walk across Spain.

Next time I might write about all the alternative medicine and therapies I have tried with varying results.

BIO: Name is Walter van Praag. Born in Holland 8 July 1965, diagnosed with CF at age 10, migrated to Australia at age 13. Educated in Canberra, complete with BA in Philosophy and BSc in Mathematics (not because I was smart, just because university life was perfectly suited to CF!). Ended up working with computers for a living after having gone through numerous government jobs and even set up and operated a small transport business! Worked in HK for a year, 3 years in PNG, 3 years in USA, travelled the world on a budget at every opportunity. Greatest claim to fame was receiving an Order of Australia Medal for 'service to community health through raising the awareness of cystic

fibrosis'. My personal biggest achievement was writing my first book; 'Coughing the Distance - cycling from Paris to Istanbul with CF'.

Note from Ronnie: Thank you SO MUCH Walter for letting us peak into your daily life of exercise and Cystic Fibrosis. You've provided us with great examples of different types of exercise we can be doing and ways that we can "keep it fresh". It's obvious that exercise has played a big role in your life and there is no doubt it is a huge reason that you are still kicking major booty today! Keep up the good work and thank you for all of your time and effort put forth into CF awareness.

First Friday: It's a Human...

...and it MOVES!!

Yesterday's ultrasound was by far the coolest yet. Our little peanut has graduated from looking like a seahorse, to looking like a real, live baby! We could instantly see little arm and leg buds and peanut actually has a visible head - in fact, a head that made up about 1/2 of the body (which we're told is normal, but scares me to death for the labor! If peanut has Ronnie's head, it could be very interesting!) Also very cool was the fact that this time you could see the umbilical cord, and watch the blood flow through it. It's little heart was beating even faster now - at about 178 beats a minute. The beating almost appeared in tandem with the blood flow through the umbilical cord.

And while all of that was so incredible to see, the most amazing part was that our baby was MOVING!! Yup, at just 9 weeks and 2 days, peanut was moving. We watched in amazement as it's whole body would wiggle, and as the little arms and legs would punch and kick. We're attaching a video, so you can see the wonder that is a tiny baby moving. You'll have to watch VERY closely though, because the movement isn't noticeable if you blink or aren't focused.

All in all, it was one of the most incredible experiences of my life - I think even more exciting than seeing the heartbeat for the first time. Something about peanut actually looking like a baby AND moving made it all so real.

Thankful Thursday - Trial Runs & Ice

Know what time it is? 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. as I mentioned, I no longer have the "linky tools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful that our infertility clinic gives away ultrasounds like candy (and they actually give out candy too!!) I am so very thankful that we have an ultrasound today, and I'm so thankful that we are able to frequently able to check up on peanut. The peace of mind that it gives me to see the little heart beat flutter is much needed.

I'm thankful for small group. We have been going to a small group - consisting of couples from our Sunday morning After I Do Sunday school class...made up of people who have been married less than 5 years. I always enjoy our Wednesday small group and leave feeling like I've learned something new to apply in my marriage, and feeling fulfilled after a night of fellowship.

I'm thankful for ice. Our ice maker was on the fritz the last few days. And our handy man (Ronnie) took time time yesterday to figure out the issue and got it fixed. Man, I didn't know how much I loved ice in my drinks before we didn't have it around. A freezing cold glass of water never tasted so good.

I'm thankful that I'm off of Progesterone shots. Not only is my bum starting to feel better, but I have felt slightly less tired since stopping the injections. I find I'm still sleepy at night, but the last two days I haven't been as tired mid-day, and I have been sleeping sounder at night. I am so thankful that I had the medicine to help our baby at the beginning of my pregnancy, and I'm even more thankful that my body has taken over and I'm done with the shots!

Ronnie's List:

I'm very thankful for our gym. A few days ago I hurt my foot running and haven't been able to lace up shoes and pound the pavement since then. Thankfully, our gym provides a ton of different exercise equipment that doesn't pound on my foot. A couple days ago I did the hand cycle and yesterday I did the exercise bike. Not only does it have a variety of exercise equipment, but they're all equipped with TVs which makes time fly by!

I'm thankful for our garden. Last year upon moving into this house the previous owners left us with a flourishing garden which I very quickly killed. I'm now a year older and wiser and looking forward to the opportunity to tend to my crops :) I'm not promising that everything will live, but I do promise to do better than last year!

I'm thankful for trial runs. Yesterday we had the opportunity to take care of my little cousin who is around two years old. Let me just say that if Mandi and I are lucky enough to have a kid half as good as Luke, we would be in heaven. We did some arts and crafts and then I cleaned the kitchen as Mandi and Luke fell asleep to SpongeBob SquarePants. It is just nice to experience having kids around even if it is just a little taste of what our life will be like in a couple of years.

So, what are you thankful for today?

Rondi's Recipes: Irish Corned Beef Stew

In honor of St. Patty's day a little while back, Mandi and I decided to make some Irish Stew. We didn't follow the recipe to a tee, but we were close enough not to call it our own creation :) If you want to see the original recipe, please click here.

Corned Beef

Potatoes, Carrots and Parsnip...oh my!

Guinness beer...pretty sure we have 5 bottles left.

Chopped Onions

Looks better than I remember

Enjoy...with enzymes on the side of course!

Prep Time: About 20 minutes (with two people)

Cook Time: About 3 hours

Total Time: About 3 hours and 30 minutes

What we liked:

I really like soups/stews that are chunky. This stew definitely fit the bill.

I'm a fan of any hot soup/stew during a cold night.

I thought it was really easy to make.

Cleanup was easy. One cutting board. One pot. One knife.

This meal was very hearty! I tend to love chunky soups more than your average bear.

It was a little chilly out and I don't think it can get much better as far as a "comfort" stew goes.

Meat and potatoes. I could probably eat that everyday of the week. Winning.

The prep was very easy and once it started to cook, really didn't have to do much.

We also added cabbage to the stew, another thing that I could eat everyday (stewed).

I love corned beef.

What we'd change:

I thought it could be more flavorful. I don't know what I'd change, but I'd add something next time.

Speaking of flavor, it might be better if we seasoned the meat or even let it soak in a marinade.

The pieces of cabbage were a little big for my liking. Next time they need to be smaller.

I want to try this out in the slow cooker.

I had to add quite a bit of salt to this meal to maximize the flavor.

The meat chunks were actually a little too big.

I'd probably want to add another vegetable or two.

I'd also like to try a similar recipe in the slow cooker.

Here's our overall rating (with 1 being the worst meal we've ever had and 10 being the best):

Mandi's Rating: 7

Ronnie's Rating: 6.0

Again, if you guys have any suggestions on how this is laid out or what you guys would like to see answered/done differently, please let us know :)

Graduating to an OBGYN

Yup, graduating. At least that's what it felt like when I walked into my OBGYN's office yesterday morning. I had a strange sense of pride as I filled out my forms. I somehow felt like I now had a "normal" pregnancy. I now was at an appointment that everyone goes to. It felt good. It felt like we had crossed a certain threshold; like we made it to a certain point; like we were graduating onto "pregnancy" and not "trying to get pregnant." Unfortunately this graduation isn't as cut and dry as high school to college or college to the work force. We still have a little bit of overlap, as our fertility doc wants to see us another few weeks, but it feels good to be starting the transition.

Yesterday's appointment was just a meet and greet. I am going to a new OBGYN, so I had to fill out some new patient paperwork and then just sat down and chatted with a PA. She was oober nice. She felt like my BFF (yes, I did just use "BFF) and even hugged me as she headed out of the office. We'll be headed back next Monday for our first ultrasound with them, and then they'll see us every four until it's gets closer to D day.

Yesterday was also my LAST DAY OF PROGESTERONE INJECTIONS! If you can't tell, I'm flippin' excited - and so is my incredibly bruised, sore bum. I am thrilled that I am done with the shots, but a little nervous too. You stop the injections when your body takes over. And I'm just hoping my body will take over as it should. There's absolutely no reason it shouldn't, wouldn't and couldn't, but a worrier will still worry :) Supposedly I will feel way better once I'm off the Progesterone. They told me at my appointment yesterday that it makes you more tired, more bloated, and more "down". The only catch is that the Progesterone can keep morning sickness at bay (I learned for the first time yesterday). So I could be in for a little reality check in the next week or so. Only time will tell!

Thursday we head to see our fertility docs for another ultrasound. Again just totally routine and more for our enjoyment than their need. I cannot wait to see little peanut's heartbeat and what it's looking like this week. Hopefully less like a sea creature and more like a human! This week, according to babycenter.com, our baby is the size of a grape. It has arms and legs, even earlobes - I wonder if its earlobes will be as soft as its Daddy's?

That's it! We'll post pictures of my belly next week, and ultrasound pictures on Friday. Any guesses what it will look like this week? Maybe a Platypus?

Understanding Cystic Fibrosis: Biofilm

There was a recent conversation on CysticLife regarding sputum cultures and their effectiveness in determining the right course of antibiotics. This conversation then led into a short discussion about biofilm which got me thinking that many of us probably aren't that familiar with what it is and what it has to do with Cystic Fibrosis. In my quest for all of us to understand this disease a little bit better, I wanted to post the abstract and conclusion from a recent research article that I read regarding biofilm. Enjoy!

You can find the full article on Medscape.com or by clicking here (you must sign up for a free account to view the entire article)

Abstract

The persistence of chronic Pseudomonas aeruginosa lung infections in cystic fibrosis (CF) patients is due to biofilm-growing mucoid (alginate-producing) strains. A biofilm is a structured consortium of bacteria, embedded in a self-produced polymer matrix consisting of polysaccharide, protein and DNA. In CF lungs, the polysaccharide alginate is the major part of the P. aeruginosa biofilm matrix. Bacterial biofilms cause chronic infections because they show increased tolerance to antibiotics and resist phagocytosis, as well as other components of the innate and the adaptive immune system. As a consequence, a pronounced antibody response develops, leading to immune complex-mediated chronic inflammation, dominated by polymorphonuclear leukocytes. The chronic inflammation is the major cause of the lung tissue damage in CF. Biofilm growth in CF lungs is associated with an increased frequency of mutations, slow growth and adaptation of the bacteria to the conditions in the lungs, and to antibiotic therapy. Low bacterial metabolic activity and increase of doubling times of the bacterial cells in CF lungs are responsible for some of the tolerance to antibiotics. Conventional resistance mechanisms, such as chromosomal β-lactamase, upregulated efflux pumps, and mutations of antibiotic target molecules in the bacteria, also contribute to the survival of P. aeruginosa biofilms. Biofilms can be prevented by early aggressive antibiotic prophylaxis or therapy, and they can be treated by chronic suppressive therapy.

Conclusion & Future Perspective

Pseudomonas aeruginosa adapts to the respiratory zone and to the innate and adaptive defense mechanisms of the lungs by forming mucoid biofilms, which survive for decades, in spite of the inflammatory response, where the lung tissue is gradually destroyed. P. aeruginosa also adapts to intense antibiotic therapy by forming mucoid biofilms, but also by conventional resistance mechanisms, which act synergistically to allow P. aeruginosa to survive. P. aeruginosa adapts to the anaerobic conditions in sputum in the conductive zone of the lungs by splitting-off nonmucoid variants, which do not form biofilm in CF patients and, probably, do not play any major clinical role. Biofilm formation is, therefore, the major survival mechanism of P. aeruginosa in the lungs of CF patients, and it is the clinically most important mechanism.

A promising new strategy may be to target biofilm formation by the use of enzymes and other chemicals, such as polyvalent anions, which can dissolve the biofilm matrix (e.g., DNase and alginate lyase). Also, QS inhibitors increase biofilm susceptibility to antibiotics. Induction of neutralizing antibodies against chromosomal β-lactamase of P. aeruginosa improves the clinical outcome of antibiotic therapy with β-lactam antibiotics.This strategy, therefore, may be utilized clinically in the future to neutralize one of the important conventional resistance mechanisms. Possible prophylactic measures could also be use of anti-inflammatory drugs, or antioxidant therapy to prevent ROS-induced mutations in the mucA gene, or use of macrolides, such as azithromycin, in doses that inhibit QS and alginate synthesis, as suggested by in vitroresults and animal experiments.

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

Guest Post by Ayn Learn

My name is Ayn Learn. I’m twenty-two years old, and was diagnosed at birth with DeltaF508.

Ronnie has asked me to share my story about my college experience with CF. So here goes...

First, a little background. I was a sick baby. I was cut out early and kept in the hospital for five weeks because of CF complications. A meconium ileus, massive mucus and water in the lungs, and a collapsed lung. The doctor’s told my parents that it was a miracle I was alive and that I wouldn’t make it to adolescence.

When I was four, my father started me running. My father is a distance runner and naturally he passed his passion on to his kids. Every morning my dad and I would go on a run, rain or shine. I clocked in serious mileage as a child and adolescent, and by age eight I was averaging 40 -50 miles a week, which is an average of about 6 miles a day. My lungs grew strong. I had amazing lungs growing up, and because of that, I never really thought about CF. The CF doctors would tell me that I had the best lungs of a CF child they had ever seen.

I grew up thinking that my CF was only a mild case. Even though my parents told me that the running was the key to my health, because I had never experienced anything too severe, I didn’t believe them. I didn’t realize that it was running an hour to two every day that was saving my lungs, and my life.

When I was eleven CF began to fight back harder, but I kept running and was able to battle it. I did my nebs everyday and I ran every single day. Combined with yearly piccs, I was able to stay ahead of the game and CF was only an “occasional” disruption to my normal life.

I ran cross country and track and field throughout high school. I had my share of piccs and hospital stays, battling pseudomonas strains all the time, but I never really felt unhealthy. When I graduated, my lung function was in between 77- 86%.

I went off to college and joined my schools cross country team. This was a time for freedom.

I was living in a coed dorm with my best friend, away from home for the first time. I didn’t think I needed to make CF a priority. It was embarrassing, too, doing nebs in front of my roommate and our friends in the dorm. I didn’t want to be labeled as ‘the sick girl.’ So I lost interest in taking care of myself. I was really relaxed with my treatments and did them maybe every other day at best. I did not make my health a priority at all.

Halfway through my first quarter I started feeling bad, and I began to experience extreme difficulty in running. Every step I took it felt like I was drowning. Running became hard and unpleasant.

A few weeks after that, I coughed up blood for the first time. This was terrifying. I had been coughing into tissues all night in the dorm room, and when I woke up I saw that those tissues were filled with nothing but bright red blood. I rushed to bathroom and coughed up mouthfuls of blood, probably at least half a cup total. I had never been so freaked out. I made an appointment with the CF clinic and proceeded to do the stupidest thing I could have done in this situation.

I quit running.

I can honestly say that that was the biggest mistake of my life.

The Biggest. Mistake. OF MY LIFE.

The CF appointment shortly after revealed pseudomonas and a decline in lung function to about the low 60s. I did a picc line while living in the dorms and my roommate and friends watched me ‘shoot up.’ For someone who didn’t want to appear different or sick, I wasn’t too happy.

Sadly, though, this wasn’t the wake up call that I needed.

Once I finished 3 weeks of treatment, I went back to my old habits of inconsistency. I wasn’t running now, and I wasn’t doing the vest (I didn’t have one at the time, never having need for it before because of all the running). I wasn’t doing my treatments consistently. I pretty much became a couch potato, my only exercise being the walk to my classes.

I still believed that my CF was “mild” and that I wasn’t like all the others who would get sick and die if they didn’t take care of themselves. I wanted so badly just to be normal. But I wasn’t. I continued to need more picc lines and soon I couldn’t even make it three months without coughing up blood and needing another picc.

I watched my lung function decline each month. In a year and a half, I watched my lung function drop from about 70% to 47% ... Simply because I stopped running and I wasn’t consistent with my treatments.

My CF clinic stopped treating adults and sent me away to a new clinic two hours away. After this, I felt abandoned. I felt like everyone was giving up on me and now, when I would try to do my nebulizers every day, it seemed to be too late. Nothing was working and my lung function continued to decline. I was sitting in the hospital with yet another picc, when I realized that things needed to change or I was going to die. I finally heard what my parents had been yelling to me over and over, what I had been too stubborn to hear:

That it is running that keeps you healthy. That it’s doing your treatments every day that keeps you alive.

It was both a horrible and wonderful moment. In that moment I realized that all of this was my fault. Sure, having CF wasn’t my fault. But not taking care of myself, slacking off on treatments, and refusing to exercise – that was all on me. But it was also wonderful, because for so long I had felt helpless; I had felt that CF was winning and that there was nothing I could do to stop it. Suddenly, I had the upper hand in this battle, and I knew the secret to winning this CF war. Nebulizers and medicine are only as affective as what they can reach. If your lungs are plugged up with mucus, the medicine isn’t go to be as helpful. If your lungs are too plugged up with mucus, medicine will only help so much. You have to get the junk out of your lungs. Airway clearance, in my case running, is the most important weapon we have against CF.

My first day off the picc I went for a run. It was more like an awkward shuffle and mostly walking after that, but I did it.

It’s taken me a long time to get back into running, and I do mean a long time. It’s taken me probably a full year and a half to get back into a schedule of every day running, because knowing what to do and putting that into practice are very different things. Regardless of my years of running as a kid, running was hard now. I couldn’t jog half a mile when I started back. Running too long would make me cough and throw up and it would make me so frustrated knowing that I had been a decent runner before and now I could barely run one mile. But I kept at it.

It’s taken a long time, but I now run every morning. And every morning, I do my treatments and my vest as well.

When I rejoined my cross country team last year, and was running long distances again, my lung function shot up to 67%. From high 40’s to high 60’s. The proof is in the numbers.

So college was a hard transition. Suddenly, when you get to college, you don’t have your parents there telling you to do your treatments and make you go run or do your airway clearance. You’re on your own and you want freedom and you don’t understand that by ignoring your responsibilities to CF, you’re slowly killing yourself. The way I see it now, is that I want the best possible way of life for myself. I hate feeling sick and I hate my lungs hurting all the time. Airway clearance and nebulizers and the vest, these things were all created so that we could better our way of living – so that we can live longer and fuller lives. And if we have these amazing weapons to fight CF, running included, why on earth wouldn’t we want to use them?

It’s hard to fit in that schedule with school and work, and life often gets way too busy. But I’ve realized that you can’t ignore CF. CF was there affecting my lungs every day, whether I acknowledged it or not. But by acknowledging it, you can fight it. And yes, it is embarrassing going out in public and running while you’re coughing up mucus everywhere and puking on the sidewalk in front of your neighbors. But you’re fighting a battle and you should take pride in the fact that you’re doing everything in your power to beat CF.

Currently I do not run as many miles as I did when I was on the team, and my lung function is down again to about 58%. However, I have now graduated college and have refocused my life to getting longer and longer runs in. My goal is to get up to 10 miles before this year is over, and I know I will succeed. I’m no longer afraid of quitting running, because I recognize that running is more than a health benefit, it’s a way of life. It’s something to take pride in every day. And you feel so much better after you run.

Of course there will always be ups and down, and hospital stays and picc lines and surgeries. But what I’ve realized is that you can’t let those things stop you. You have a picc? So what. You still go for a run, just like you still do your vest and do your nebs. Airway clearance should never stop because you’re sick!

So for those who are entering college, remember to make your health a priority, always. Because once you stop taking care of yourself and lose a good deal of lung function, it’s hell getting it back. It’s much easier to keep up with your treatments every day and exercise every day, instead of spending months in the hospital.

My leaving message to everyone here is to find your exercise of choice, and learn to love it. Airway clearance through exercise is the easiest, most enjoyable, and most effective way of getting mucus out of your lungs. So take your health into your own hands. Make exercise a part of your identity, and CF doesn’t stand a chance. Whether it be running, biking, swimming, hip hop dancing, whatever you want, just do it, every day, and the world is yours.

Ayn's Bio: My name is Ayn Learn. I was born on July 5^th, 1988 in Giessen, Germany. I was premature because of Cystic Fibrosis, and was diagnosed immediately because of CF complications. I moved to America when I was two and grew up in California, where I still live today. I have one older brother, Nathan, and I’m so lucky to have him as well as my parents who are so supportive. I love my family and our three kitties so much. I know I wouldn’t be the person I am today without them. I started running when I was four and ran throughout my childhood. I’ve had twelve sinus surgeries, one intestinal surgery, one deviated septum surgery, and a lot of PICCs and hospital visits, but fortunately CF hasn’t affected my education. I graduated from high school in 2006 and graduated from college this very month, March 2011 in English Education. I’m currently coaching two middle school running teams and I absolutely love it! I now plan to become a middle school teacher and will pursue my Master’s degree in the future. CF has definitely shaped my life, but it does not define me. I have many passions and I try to live my life without letting CF control what I do. I love to sing and to write songs on the guitar, I love to write and to read, I love photography and running, and I love the fact that medical advancements are getting better and better so that we may pursue and enjoy our passions in life!

Note from Ronnie: Thank you SO MUCH Ayn for taking the time to write this inspiring and powerful blog. You make it so clear just how important exercise can be when woven into our daily routine. Like you said, if our desire is to live a normal life, then we must be willing to do what it takes to take care of ourselves. Even though it wasn't always easy, you've showed just how powerful treatments and exercise can be, even if we fall off the wagon for a bit. Sometimes, sharing the bad decisions we've made can be just what others need to hear to kick it into gear! Thank you.