Somer Love

Somer Love

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Tell us about the moment CF became real for you

Oh wow there are many times where I think CF has been real!! I think it's mostly when things don't go as planned is when CF gets real!! First hospitalizations, first hemoptysis, huge drops in lung function. I think the moment CF became really real for me was when some of my closest CF friends that I had grown up with had passed away. At that particular time in my life my own lung function was dropping at an alarming rate as well and I was going in the joint 6 to 7 times a year. I was hyper compliant, however, it still wasn't enough to keep CF at bay. 

CF is scary, it's hard not to always be fearful of CF, especially since you never know when CF will strike. I think it's ok to be scared of something so scary. I have thoughts of fear every day about something scary that pertains to CF. Living with fear lurking over you can be very daunting at times. However, I try not to let fear decide my fate... If you can become fearless, your life can be limitless. We all have fears, our fears help develop our courage... It might not feel like it but our fears really make us stronger. 

 

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

After many years of my health being unstable I had to take a step back and reevaluate my life. I finally had to make the hardest decision of my life, or rather the decision was made for me, when I blew the lowest pft ever; I was so sick. I had to to stop working it was literally killing me. Stress and CF do not mix well at least for me the mixture is toxic. It wasn't easy, I felt like my career was my identity. I had to reinvent myself and focus solely on my health. I changed my diet, started a trial where I was granted early access to Cayston and I started taking many supplements. My lung function finally started to remain stable. I was able to start staying out of the joint for longer periods of time. Although it was the hardest decision I have made, it was the best decision. It saved my life. 

 

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

I wish people understood CF and what we all go through. How much time is actually spent behind the scenes of CF. Everyone always sees us after our treatments. When we are ready to go, or when we show up. They don't see us when we can barely get out of bed or when we are doing hours of treatments or hours of sterilizing, coughing until we pee or throw up. The invisible part of CF is a catch 22. It's good so that CF doesn't always have to be the center of attention and you don't get treated differently, but also sometimes it can be hard because we don't look sick and people have high expectations. See the catch, its hard to describe. I am on full time o2 so the invisible part isn't so invisible anymore for me. 

I think the catch 22 applies more to my adult years. When I was growing up, I feel like I had a pretty normal childhood. I was diagnosed at 11 months old, there wasn't much to treatments back then,  I mostly just got pounded everyday and was very active.  I didn't start taking enzymes until I was 8, and my first nebulized treatments weren't available until I was in 8th grade. I didn't tell many people growing up I had CF because I never wanted to feel different or be treated differently. I would go in the hospital for clean outs over Christmas break so I wouldn't miss much school and when I got back I just told everyone I was out of town. It's so different in today's world. These kiddos have so many treatments to do and all these meds that are available, which is so amazing because the medical advancements have been life changing and these kiddos are going to grow up and have long lives. They are my heroes they go through so much! 

 

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

I had a difficult time gaining weight when I was a teenager. I think I was 15 and there were talks of NG tubes and how we could get me to gain some weight. Bribes went far and I made a deal with my mom and everyone at clinic that if I gained 10 lbs by my next appointment I could get my belly button pierced. I'm not sure my mom was too crazy about that idea. But I wanted it done so bad. I drank Ensure after Ensure took enzymes throughout each can, and ate so much ice cream. My belly button is still pierced to this day. It acts as good reminder that I can accomplish things when I put my mind to it. 

 

Do you have any goals or aspirations for the future?

Well, one of my favorite quotes is:

"The goal isn't to live forever, but to create something that will" - Chuck Palahniuk

That is exactly my hopes and dreams for Love To Breathe® which was established in 2001. I created Love To Breathe® so I could give hope and positive energy to the Cystic Fibrosis community, especially to the families with newly diagnosed children. I believe it is important to educate and raise awareness about CF and spread Love whenever and wherever I can. 

Right now there are about 8,500 Love To Breathe® Tokens circulating around the world. I'd love to see that number grow. They are in over 68 countries and all the states now, its been such a rewarding project. Knowing that each token has had an impact on someone means the world to me. I love checking the hashtag #LoveToBreatheTokens and seeing if any fun pics pop up. 

One of my many passions in life is painting and writing. Living in the moment and making each breath count is the best way I think anyone can live life. When I am painting and writing it seems to me I am doing just that. These outlets are so healing and very therapeutic for me, and help me deal with stress and certain anxieties CF can cause. I have a goal of finishing a book I started and maybe one day getting that published. 

For now though, I'm just focusing on taking each day as it comes, living in the moment and giving back to a world that has given me so much. Making a difference in others peoples lives makes me feel good and in turn makes a difference in my life.

 I am truly blessed and so grateful for every breath I breathe. 

 

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Justin Seleska

Justin Seleska

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Tell us about the moment CF became real for you.

January 2014. It was the the first race of San Diego Triple Crown. Run 3 races that year and you get a medal after the third. I had became very sick and needed IV Antibiotics (picc line). My lungs were very congested and I was coughing up phlegm like there was no tomorrow. Definitely had not h them feel like that in a really long time, fortunately. So the day before the race I still went to the expo and picked up my bib. That night, I laid everything out as if I still was going to attempt it. I even set an alarm to be up in time for the race. That morning, after coughing all night and my lungs still very congested, I knew that I couldn’t possibly risk it for me, nor did I need/want the medical team picking me up off the course. I was not able to race. Situations like this one are just reminders that this disease can humble you at any given moment.

 

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

I’ve always been active growing up. Youth baseball growing up as a kid and then wrestling in high school. My interest in running didn’t pick up until late 2012. I was unemployed at the time and looking for something to occupy my time. I registered for a race set for March of 2013 and started training for it. In 2015, I ran a half marathon a month. Usually I’m good for about 5 or so races a year.

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

As much as there are people like me and many others that are fortunate enough to get to live a “normal“ life, there are still many more that unfortunately do not. Hopefully with the many recent advancements in treatments, this will quickly change. But we definitely cannot rest until those days come.

 

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

The year of 2015. Halfway through doing a half marathon every month. It was challenging to get a good run schedule in, but I still knew I had to run in all of the races that I had registered for.

 

Do you have any goals for the future?

My goal in life is just to be as positive as I can be and live my life to the fullest as cliche as that sounds. I want to one day hopefully be able to run a full marathon. But personally, I hope and feel that I can be a positive influence on others with or without CF. If I can help a person push through something and not give up then my work here is done.

Much love to all reading this. - Justin S.

 

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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