Caleigh Haber

Caleigh Haber

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Tell us about the moment CF became real for you

The moment cystic fibrosis became real to me was one I was not prepared for. Growing up I lived a healthy and social lifestyle. I was involved in gymnastics, competitive cheerleading, and track. At 19 years old I moved to San Francisco to pursue my career in culinary arts and not too long after my health took a decline. By the time I was 23, I was working to be listed for a double lung transplant; a live-saving surgery I so desperately needed with a lung function of 18%. Over night I had gone from working as a pastry cook in a three michelin star restaurant to not being a able to obtain a healthy oxygen saturation during simple tasks; such as walking to the restroom from the living room in a 1,000 sq ft apartment. I was immediately rushed to the hospital and stayed there for two months where I was put on hospice, 24 hour supplemental oxygen, and a feeding tube. 

 

What did your first step toward living a healthier lifestyle with CF look like?

My first step toward becoming a healthier me was to accomplish a list of goals in order to get listed for new lungs. Something I am still working at today as I prepare for another set of lungs. These goals included reaching a healthier weight, controlling my glucose and lowering my A1C, maintaining a target creatinine, improving my PFT, remaining in contact with my healthcare team every day, and being 100% compliant on my medical regimen. It look me 6 months to be listed for a double-lung transplant and after waiting for 18 months I received new lungs in October 2015.

 

What about living with CF do you wish more people knew?

Despite being a mostly invisible disease, there are so many constant factors in our lives that we have to comprise and/or sacrifice. Including enjoying bonfires at the beach because of the air quality from smoke, traveling internationally because some of us in end-stage lung disease have too much risk of becoming hospitalized in a foreign country, doing social activities where we know even 1 individual may be sick at, drinking with friends at times because alcohol impacts absorption which we already struggle at making us malnutrition. I also wish that more parents, caretakers, and children with cystic fibrosis educated themselves on medical knowledge, treatments, trial studies, and healthy eating so that the generations to come enter young adulthood with better tools to advocate for themselves and get the most lifespan with their birth lungs. 

 

When was a time you encountered a challenge and then exceeded your goal?

The biggest challenge I have ever overcame was at 6 months post double-lung transplant. My family and I traveled to Hawaii to celebrate life, success, and to enjoy a time outside of medical walls. About 9 days into the trip we had traveled from Maui to Oahu. I got so dehydrated from the sun and salt water that I had to make a visit to the emergency department on the island. The next day I went back to the beach but again didn’t feel well and had to return to the E.D.. After 3 weeks I woke up at Stanford hospital where I was put on a ventilator, ecmo, and in a coma. Waking up I was so deteriorated I couldn't swallow, speak, walk, use the restroom, or even hold my head up. Over the span of 2 1/2 months I learned to be self reliant again. To brush my teeth, stand, walk, get out of bed, use the restroom, and every thing in between. Even today I still feel the effects of this trauma, however I know that succeeding at all these re-learning experiences was an uphill battle I conquered.

 

Do you have any goals for the future?

By far the largest goal for my future is to conquer another double-lung transplant; I am in full chronic rejection now. If I gain another set of lungs everything in life will fall behind. Such as marriage, children, career, writing a novel, and being present at all my loved one’s small and big moments.

 

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Wes Parsel

Wes Parsel

Tell us about the moment CF became real for you

Growing up, CF was always there, but it was a white noise in the background of my life. It was there when kids at soccer asked why I had a big scar on my stomach. It was there when friends asked why I dipped all my food in lemon yogurt with sprinkles (enzymes) in it. And it was there in the form of frequent stomach aches and visits to the nurse's office.

It was there, but it was shrugged off for the most part. One moment it became real for me was in biology class during my sophomore year in high school. The teacher was giving a lesson on genetics and naturally focused on genetic diseases. She said Cystic Fibrosis, spoke to the life expectancy and the lung problems patients endure. I vividly remember my whole face getting hot and red, I was embarassed because I felt the whole class was discussing my fate. I was also embarrassed because while CF was a big part of my day, I wasn't the most knowledgable patient. I also didn't realize the life expectancy was so low and the numerous challenges to having children. After that day, I took my CF more seriously and became more knowledgeable.

 

What did your first step toward living a healthier lifestyle with CF look like?

As I came into my own understanding of Cystic Fibrosis, it was during the exciting and sometimes wild teenage years. I struggled with walking down two diverging paths in dealing with my Cystic Fibrosis - The first being a belief that since I might not going to live very long, I should really live it up! The second path, is a realization that my health is really a gift. Cystic Fibrosis is going to give me a few more challenges than my peers, so I can't mess with unhealthy things like drugs, alcohol, and dangerous activities. I was the guy in the car full of teenagers, screaming for the driver to slow down and use the blinker.

 

What about living with CF do you wish more people knew?

In my experience, I really don't want to be treated any differently because I have CF. For a long time I wouldn't tell people that I had CF. I could always sense a subtle difference between how people treated me when they knew. 

 

When was a time you encountered a challenge and then exceeded your goal?

My wife is a true adventurer! We met in college and she was the only sorority girl up at 5:00 am training for a marathon. After we started dating, she got me into running more consistently and I did my first half marathon. Fast forward many half marathons and my wife and I were at the starting line for the LA Marathon. 

The 12 hours before the race began were an adventure. We booked an AirBnB in Santa Monica, but it happened to be right above a night club. The dance music shook the entire apartment. Finally, the music ended at 2:30 am and our alarms went off at 3:30 am. Needless to say, we had a long night of trying to stuff kleenex in our ears. The morning of the race was a humid 85 degrees and I knew half way into the marathon that I was going to hit some trouble. 

Hours later and I was on the final stretch, trying to limp out a jog and fight off cramps. I finished, drank salt tablets, gatorade and everything else I could get my hands on. Unfortunately, when we got back to the apartment, my vision faded and I started to pass out. I woke up on Monday with no memory of what happened! Despite taking 10 salt tablets and eating so many snacks, my sodium and potassium levels were extremely low. 

The marathon was certainly a challenge, but I was proud to finish. I thought about ending my marathon career, but the difficult journey was too rewarding. Anna and I successfully completed the San Diego marathon with no drama and will be tackling the LA marathon again this year! 

 

Do you have any goals for the future?

This year, in addition to giving the LA Marathon a second shot (the course is just too awesome to give up on), I'll also be doing my first half ironman in Oceanside. Before my first triathlon, I couldn't swim 25 yards in a pool. I just assumed that my lung capacity was too small to swim because I couldn't catch my breath. It was definitely my technique all along! I went from total beginner to now crazy enough to attempt a 1.2 mile swim. It's the best kind of goal because I'm really not sure how it's going to turn out, but I'm excited to give it my best shot! 

CF'ers understandably don't hang out much, but I would love to get as many CF runners to the LA marathon as possible this year! If anyone out there is interested, I can provide my training/nutritional experience, training schedules, and anything else they might need.

They can email me for more information at wparsel@gmail.com!

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Kicks Back Recipient, Cyndi G

We caught up with our friend and Kicks Back recipient Cyndi G. to talk about how she started running, how she  manages her training, and how she navigates her CF life. Check it out!

1. When did you start running? 

I started running in the summer of 2012.  I had started exercising that year by walking and taking Zumba classes, and then I realized that running would be a more efficient work out.  I started out by just trying to run to the end of the street.  Then I slowly added more running distance in with walking in between.  By the fall of 2012, I ran in my first 5K where I was able to run the entire way and I was so proud!  After running in 5Ks for a few years, I wanted a new challenge.  So in the spring of 2015, I trained for my first half marathon.  At the end of the race, I was so amazed that I could run 13.1 miles!  I was hooked on running!  I have stayed very active since finishing my first half marathon and have now completed a 10 mile race, a sprint triathlon, and 3 additional half marathons.  I plan to train for my 5th half marathon this spring.  

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2.  What is your current training schedule?  How do you balance training with daily life?

I now train for a half marathon every spring and fall, and try to do other forms of exercise in between (like swimming and cycling).  When I am training for a half marathon, I run 4 times per week.  I wake up early during the week and run before my husband and kids are awake and before I have to go to work.  On the weekends, I do my long runs on Saturday mornings with a running group.  I never exactly want to jump out of bed to go for a run (particularly when it is dark or cold outside).  But I have found that if it get my run done first thing in the morning, I am always glad that I did it and work/life do not get in the way.

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3.  What is your favorite race you have run?

I ran the Soldier Field 10 Mile race in Chicago with my sister, Laura, who also has CF.  The weather was perfect, it is a very well organized race, and the course includes an awesome view of the Chicago skyline and finishing on the football stadium field.  But the best part of that race experience was running it with my sister!  I was so proud of both of us when we finished.   

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4.  What is your favorite part about running?

I have never felt better since I became a runner.  I feel strong.  I have also made some good friends from joining a running group.  And races are fun!  

5.  What is your favorite post race treat? 

The Taco Bell Bacon Grande Scrambler Breakfast Burrito!  It is delicious!

6.  Any advice for current or future runners out there, especially CF runners?

Start with a small goal (walking, running down the street, building up to running a 5K, etc.) and then just keep at it.  A lot of days will feel rough, but then all of a sudden you will notice how much you have improved over time.  And try to find a running group.  I found one through my local Fleet Feet store.  Training for a half marathon and long runs are so much better with a group to support you along the way!  There are pace groups for everyone, from fast runners, to slower runners, to interval runners, to walkers, so you do not need to feel intimidated about joining.  Finally, know that you can do so much more than you think you can.  I was never a runner growing up and could not imagine running 1 mile, let alone 13.1 miles, when I started running.  But if you stay determined, you can do it too! 

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