Saturday, March 26, 2011

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 5th, 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.

Friday, March 25, 2011

How is CF passed down?

I had a question thrown out to me yesterday on Facebook and I thought I'd share my answer here as well.

What if one parent has CF and the other parent is a carrier or isn't even a carrier, are your chances for having a CF child still the same? I'm so confused about this.

Since CF is a genetic disease it takes "bad genes" from both parents to have a baby with CF. As a CFer I have TWO copies of the bad gene. As a "carrier" you would only have ONE copy of the bad gene. Those who have no "bad genes" at all are neither carriers or CFers.

So, if two people with with TWO bad genes (both with CF) make a baby, the baby would virtually have a 100% chance of having CF since neither parent is able to pass down a "good gene".

If a CFer (TWO bad genes) makes a baby with a carrier (ONE bad gene and ONE good gene) the baby would have a 50% of getting TWO bad genes (the baby would have CF) and a 50% of getting ONE bad gene and ONE good gene (the baby would be a carrier)

If a CFer (TWO bad genes) makes a baby with a person who doesn't have CF and is not a carrier (TWO good genes) the baby would virtually have a 100% of getting ONE bad gene and ONE good gene therefore making the baby a carrier (ONE bad gene and ONE good gene).

If a carrier (ONE bad gene and ONE good gene) makes a baby with another carrier (ONE bad gene and ONE good gene) the baby would have a 25% chance of getting TWO bad genes (the baby would have CF) a 50% chance of getting ONE bad gene and ONE good gene (the baby would be a carrier) and a 25% of getting TWO good genes (the baby would not have CF and it would not be a carrier).

If two people who do not have CF and are not carriers make a baby, meaning they both have TWO good genes, then the baby would have a 0% chance of having CF.

Now this is obviously a very stripped down explanation but hopefully a simple enough one that is very easy to understand!

Thursday, March 24, 2011

Thankful Thursday - Pita Bread & Jelly Bird Eggs?

Know what time it is? It's thankful Thursday time! I've been out of the Hole for over a week now and am living the dream! 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 peanut is growing just on time and that I'm still having a very smooth and easy pregnancy thus far. I'm thankful that with the exception of being a bit sleepy, I feel great with no morning sickness. I'm just so thankful to be pregnant with a healthy, growing baby!

I'm thankful that the weather is so gorgeous in Arizona. Yesterday I was able to enjoy a 4 mile walk outside in 75 degree weather. It doesn't get much better than that!! I feel so blessed to live in a city where the sun is shining most days and you can be outside all year long.

I'm thankful for pita bread. We bought some pita bread for a recipe the other day, and I have now found a bunch of uses for pita bread. Pita with hummus and veggie sandwiches, pita with scrambled egg whites and salsa, pita with grilled chicken....the possibilities are endless. I always love new additions to my pantry.

I'm thankful for my hubby. Yesterday Ronnie joked that I literally couldn't have a better husband for me (who knows what the context was). I laughed, but I then was legitimately thinking about his "claim" and I actually, really agree with this joke. I couldn't have a better husband for me. Could there be other fantastic husbands out there? Sure. But Ronnie is truly the BEST one out there for me. I feel very blessed to have a hubby that is with me through it all, and loves me, for the crazy, emotional, hormonal, passionate girl I am. I am blessed.

Ronnie's List:

I'm thankful that my workouts have been going so well. I certainly haven't felt like running everyday since I got out of the Hole, but that's just what I've done. I've had very minor leg pain and my lungs haven't really held me back one bit. I look forward to pushing it even further and continuing to increase my mileage week upon week.

I'm thankful that my wife gives me just the right amount of push and pull. What's great about Mandi is that she doesn't breathe down my neck about taking care of myself and running/getting to the gym, yet she encourages me in just the right way to the point that I want to push myself further than I did the day before. I don't know that there is a science behind her method of madness, but if there were, I'd bottle it up and sell it.

I'm thankful for the opportunities I get to talk to parents with children with CF. I have a big heart for the CF community, but I have an even bigger heart for the parents in the CF community. I truly believe that behind every empowered CFer out there stands proud parents who empowered him or her. I love getting the chance to talk to the next generation of "empowerment givers" :)

I'm thankful for jelly beans and not any jelly beans, but specifically Brach's Classic Jelly Bird Eggs. They are seriously the best ever and I eat way too many "just one handful"s throughout the day. In fact, I have 5 sitting next to me right now with one in my mouth. My favorite flavor is the pink one. You?

So, what are you thankful for today?

Wednesday, March 23, 2011

Exercising When You Don't Wanna

Lately, I've found it's harder to be motivated to get into the gym. Being 8 weeks pregnant, I am way more sleepy than usual, and ready for a nap by about 11am every day, so you can imagine, that by the time 5pm rolls around and I'm done working, my energy tank isn't very full. I try to drum up excuses and ways to push off the inevitable. You know what I'm talking about, "hm, maybe I don't have time tonight." or "I won't go today, but I'll go twice as long tomorrow." Those sound familiar?

I have found that if I ask myself these 9 questions (wanted 10 but fell short...suggestions?), I generally end up in the gym with my bum on the treadmill or elliptical.

1. What is my motivation for not wanting to work out today? This one's a toughy, for you actually have to be honest with yourself. I ask myself? Am I really that tired? Am I genuinely sick and not feeling well enough to complete a workout? Am I being lazy? Am I just bored of my workouts? Am I injured? Most the time the answer to this question is found to be inadequate to keep me out of the gym. If you are injured and truly ill (like must be at home in bed the next 3 days) then it may be a legitimate excuse to take a rest day.

2. What will I feel like during my workout? This is an important one. Most days, as soon as you start that workout, you're glad you're there; you're glad you're doing it - at least that's the case for me. Sure, I'm tired or dragging a bit here and there, but when I really assess how I'm feeling, I don't feel bad or in pain (working out will often feel "uncomfortable" if you're doing it right, but it should be overly painful).

3. What will I feel like after my workout? This is one that always helps me get up and go. I know that once I'm done with the workout, I'll be glad that I did it. I rarely finish a workout and think, "man, I really shouldn't have worked out today."

4. If I don't work out, what will I do instead? If the answer isn't lay in bed eating chicken noodle soup, I know I should go to the gym. If my answer is "Go out with friends," "Talk to my mom on the phone," or "Go to the store" I know I should go to the gym. If I have the energy to be social or shop, I have the energy for a work out.

5. Is there a different workout that actually sounds appealing? Sometimes it's just a matter of being bored with the usual workout. I find this is my reason for not wanting to go most times (if I am honest with myself). If there is a workout that sounds better (elliptical vs. running, hiking vs. the gym, going for a walk vs. lifting) than do the thing that sounds more fun. If boredom is keeping you for working out, it's better to switch up the routine (even if it throws you off a bit) to keep your sanity, and to help you keep up your fitness goals long-term.

6. What will it take to get me out the door? Sometimes I find that if I allow myself to rest for 30 minutes between work and the gym, my batteries feel recharged and I'm ready to go. Sometimes I call my mom and say, "Tell me to go to the gym" - just hearing someone else tell you "GO!" will do it. Sometimes it's a matter of waiting for Ronnie to say, "ok, gym time" to make me feel like it's time to move. Sometimes this takes a little trial and error to figure out what will actually make you go. For some, "sitting down for 30 minutes" could mean never getting back up. So find what will get you out the door.

7. How will I reward myself? I do this often. On a day I'm not feeling like working out, I decide how I'll treat myself for a job well done. I try to avoid junk food rewards as much as possible (seems like it's a bit counter-productive) but some days I do bribe myself with the notion of dessert after dinner. More frequently, I like to use things like getting home and sitting on the couch watching TV instead of doing laundry, not making dinner, even just the thought of having an excuse to take a nice long bath (or shower now that I'm pregnant) when it's cold out feels like a good enough reward.

8. Who can keep me company? This generally requires a little advanced planning - at least to develop a group of people that you know will work out with you. I am fortunate enough to have a hubby that works out, so my workout buddy is build in. However, before Ronnie, I had girlfriends in college that I would call to work out with and when home, my mom, dad and brother were all workout buddies.

9. Why should I work out? There are many benefits of exercise, but until we personalize them to us, they don't really help to motivate us. There are a few things on the list that always motivate me. 1. I simply feel better after I work out. 2. It's a good work to unwind from the work day 3. It makes me feel better about my body (it keeps the numbers on the scale down, and even if the numbers rise a bit, I feel better about the rise if I'm working out) 4. If I work out, Ronnie will be motivated to work out (and vice versa). And sometimes it's more specific reasons like I've been more winded going up stairs lately, I'm training for a race, I want to get my butt toned so it looks good in my bathing suit. Come up with your list if you don't have one already, it makes working out on the lazy days way easier.

So that's it, the questions I ask myself when working out just doesn't seem all that appealing. How about you, any questions you ask yourself?

Tuesday, March 22, 2011

2nd Ultrasound Update!

Yesterday, Mandi and I woke up nice and early in anticipation of our second ultrasound. If you guys remember from a couple of weeks ago, actually last week, we had our first ultrasound at about seven weeks pregnant. At that time our little peanut was about the size of a blueberry, which come to find out was about 9 mm, and we're proud to report that he/she is now about 15 mm! We went in with some of the same emotions that we did last week not exactly knowing what to expect and hoping for the best. It's always an interesting feeling when they first start the ultrasound because, at least in our experience, the first thing we see is what looks to be an empty black sack. It must be the way that the ultrasound instrument is pointed at first because now we're two for two in that empty black sack containing our little baby.

We were able to see the heart beating fast again, this time 167 bpm and our doctor informed us that right now our baby is mostly made up of his or her heart. Everything else is very normal and he is very pleased with the progress. Mandi definitely has less bloating in her stomach and is visibly more comfortable when walking, sitting or standing. The decrease in the bloating of the belly is most likely due to some of the fluid in her ovaries and cysts, following the egg retrieval, are now starting to lose fluid. We are now expecting any bloating from this point going forward to be a result of the baby which is bloating we will take any day of the week. So all in all, it was a very good second ultrasound and we couldn't be anymore pleased with the results. Check out our little seahorse below!

We are also able to meet up with some friends of ours in the CF community that we have had the opportunity to hang out with before near their home turf. We met up with the Koblers (Brian and Jen) for the first time in San Francisco at a CF concert series event last November or so. This time they alerted us that they would be in Scottsdale taking in a spring training game between the Giants and Rockies. They were nice enough to invite us along and of course we jumped at the opportunity to hang out with them and take in a ballgame. Neither Mandi or I have ever been to the ballpark in downtown Scottsdale and I must say it was quite a treat to be in such a nice facility. Unfortunately, the weather didn't cooperate with us yesterday as it was overcast the entire day and it was raining before even the first pitch got off. The rain continued to pick up throughout the game and eventually the game was stopped in about the fourth inning with the Rockies handing it to the Giants. Luckily, the ballgame wasn't really the reason we were there.

We were there to hang out and talk with some friends of ours and had baseball as icing on the cake. Since the game got out early, we all headed to lunch to hang out and chat some more. Mandi and I love being able to get to know others in the CF community that we often exchange e-mails, Facebook messages and chats on CysticLife with but rarely get to meet in person. It's so nice to be able to "put a person" to just the face or the name that comes across our computer screens many times in our daily lives. The Koblers are no exception as they are very warm and friendly people who are fun to hang out with. As a bonus, we also got to hang with Grandpa Kobler and Brian and Jen's daughter, a young little cyster named Riley. She is as cute as a button and was definitely entertaining while we are all inhaling our pizza. We absolutely cherish opportunities like this and were very blessed to be able to hang with the Kobler clan today!

Back on the baby front... We have another appointment for a third ultrasound next Thursday and we will for sure keep you guys up to date with the process. We're just praying for continued normal results and that our little seahorse grows and grows and grows until eight months from now that we're able to hold him or her in our arms. We feel so blessed to be able to go through this experience so far virtually unscathed and are just hoping that this trend continues. We know that it is ultimately in God's hands and we have the ultimate faith that He will provide the perfect outcome. We thank you guys so much for following along with us on this journey, checking in, sending us encouragement and just letting us know that you're there for us.

Monday, March 21, 2011

I Outrun CF.

Yesterday was a great day for the CF community at large. All over the nation, and in fact the world, we got together (virtually) to "out run" CF. The Rock CF and CysticLife foundations teamed up to put on a special virtual race that could be run anywhere, by anyone and at any distance. When putting together an event like this you never quite know how it's going to turn out and I think that the foundations behind it are very pleased and surprised with the results. We had runners, joggers and walkers post pictures from all over the world on the Outrun CF Facebook page as well as their own personal blogs which I've included some examples here here here here here here here here and here. I mean seriously how cool is that? It was as simple as registering online (over 200 people did just that), putting on your T-shirt and getting a group together (or running solo) all in the name of out running CF. It really warms my heart when you can see the community get together and get behind something as simple as this. It was as if with one loud voice we all screamed that we were not going to take this lying down and we were going to do what we had to do to literally out run CF!

So how did I out run CF yesterday? Well, at 7:30 in the morning I laced up my shoes, mapped out my course and then hit the pavement (right after my morning treatment of course!). I set out to do a 5K not knowing whether I would run the entire time or do some walking intermittently between the runs. The answer is I ran as well as walked. I certainly wanted to run the entire time but I didn't have the legs nor the lungs yesterday morning. Good news is that my legs probably held me back more than my lungs did. This entire last week I ran every single day and by the time Sunday rolled around my legs were pretty fatigued. After being in the hospital for 28 days it definitely takes some time to get my conditioning to the point that I can run for three straight miles. However this time out of the Hole I'm further along than most times due to all the workouts I did while in the hospital. All in all I was very happy with my time and my distance and most of all that I was out running CF with each step.

Mandi also outran CF yesterday. Under doctors orders she's not allowed to run just yet however she did manage to walk 6 miles. I know it's killing her not being able to run and she is counting down the days until she gets the green light. Right now she just has to take it easy as our little peanut grows. Mandi's definition of "taking it easy" is different than most others though. She's been doing all that she can to stay active and generally takes at least two walks a day plus whatever she has going on at the gym. Her dedication to stay fit and healthy is such a large driving force for me in my journey to awesome health and lung function.

I encourage all of you to click on the links above, "like" the Outrun CF Facebook page and check out all the blogs yesterday that were out running CF. If you have any blogs or pictures that you'd like to share of you out running CF please include the link in the comment section below. Thank you all who participated and please know that this was not a one-time event! If you weren't able to out run CF yesterday I promise that you'll be out running CF in the near future!