Jane Aula - Lung Anniversary Blog Post

Jane Aula


Age - 51

Date of Transplant - April 28, 2009

When did cystic fibrosis become real for you?

What it meant to live with CF really hit me when I was in my late teens/early 20s when I realized there were some things in life I may not be able to experience like my peers, like building a career, getting married, and having a family.  All the things you look forward to after high school and college.

Walk us through the process of the lung transplant from call to recovery?

On February 26, 2009, I experienced bi-lateral pneumothorax and had to be put on the vent.  I had to take a life flight from Beaumont in Royal Oak to University of Michigan where I had been receiving all of my treatment, and where the transplant would be done.  I woke up 5 days after the collapse, on life support at U of M, and told I had to stay in the hospital until I got new lungs.  2 months later I received the call.  I was sitting in my hospital bed when my phone rang.  My mom was with me, as she was every day from the first day I was admitted.  I called my husband, Steve, who was at work in Royal Oak and my mom called my dad and the rest of my family.  I was immediately moved to the Cardiac Vascular Center to be prepped for surgery.  I was taken into surgery around 8:30 p.m.  I remember saying “I love you” to my parents and husband.

I was taken to recovery the following morning around 7:30 a.m.  The surgery took about 10 1/2 hours.  By late afternoon the next day I was out of bed and sitting up in a chair.  I was finally discharged on May 19th.  I came home to new medications, a new routine and a new lease on life.  Prior to my transplant, I was on oxygen, did 3-5 breathing treatments a day, countless pills, endured IV antibiotics about every 3 months, and struggle just to walk to the bathroom.  Now, in some ways, I was starting all over.  It was very daunting at first.  All I had known was breathing treatments, vest treatments, IV antibiotics, shortness of breath, struggling just to get through one day.  I experienced severely anxiety for several weeks post-transplant.  Now when I look back on the recovery, I would have to say it took about 1 1/2 years to feel “normal” and back to myself.  

I’ve had many people ask me “Knowing what you know now, would you still make the same decision to go forward with a transplant?”  Absolutely!!!  I wouldn’t hesitate. 

How do you Rock CF & stay active post-transplant?

I belong to a gym called “Get Some Fitness” in Beverly Hills.  I take boxing classes 3-4 times a week and absolutely love it!  When I go I try to wear a Rock CF shirt and when I do, I’ve had the opportunity to bring awareness to not only the disease, but the Rock CF Foundation as well. I love the boxing classes and have really had a lot of fun and look forward to many more classes and beating up  at that gym.  

Any other comments or things you’d like us to know about you?

One thing I decided long before I actually received my transplant, was that if given the opportunity, I would want to meet my donor’s family, and learn about who my donor was.  I was fortunate enough to meet my donor’s mom, Carol, and her partner, Bill in July 2010.  I feel very blessed to have had the opportunity to thank them in person and share with them how their decision to honor their daughter’s last wishes had given me a second chance in life.  My donor was Jessica Varney.  She was 24 years old and from all that I’ve learned, an amazing individual, who had been studying to be a nurse, and her decision to become a donor, and her family’s decision to honor her last wishes, saved my life.


Frank Avila

Frank Avila



Tell us about the moment CF became real for you.

CF has always been a part of my life.  I didn't know anything else so CF being real was always there but when it really became a reality was the day I was in the hospital and the doctor told my family and me that we should start thinking of looking at me getting a double lung transplant.  I was just starting college and I thought my hospital visit was just another routine two week stint. I had done CF all my life and was in my "normal" routine of meds, treatments, doctors, infections, hospital stays that I honestly never thought about the "end" which would require me to have a life saving transplant if I wanted to continue living.  I was told as a kid by my doctor that my life expectancy was 21 years old, so on that day when I was told that I would need a double lung transplant is when CF became real. 


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

I have always tried to live a healthy lifestyle with CF.  I took my meds, did my treatments, everything required to remain stable.  I played sports as a kid and loved riding bikes.  But I also wanted to be "normal" so I did the normal things most teens and young adults do.  I went out with friends everywhere. I traveled with friends out of the country.  I tried to live as normal as possible but continuing to try and take care of my CF.  CF has a way of continually  reminding you that it’s still there so I had to be diligent about doing the right things in regards to taking care of my CF.  I kept up by staying active with either walking or riding bikes.  It got more intense once I moved to North Carolina to wait for the transplant.  Lots of physical therapy to keep my lungs as strong as possible and my body stronger to handle and recover from the intense surgery looming in the future.


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

This is a good question.  Growing up I would definitely say YES.  A majority of people I spoke with knew nothing about CF.  I was called a pill-popper in elementary school because I was taking my enzymes.  That incident affected me for decades and I never openly spoke about it in public or with people I recently met because I was now aware that I was different.  You don't look sick so people don't think anything until you start coughing or have to go into the hospital.  Then you have to share your story.  For the most part it was received positively and had the support from everyone.  Now I have noticed that many more people know of CF or know someone with CF.  Now I see how openly people talk about it and there’s no shame in being different and its great.  The education and the awareness has helped tremendously.  It has helped me seeing how strong others are by sharing their stories.  We need to continue teaching and bringing awareness.


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

Everyday has been a challenge.  Making it to the next day was my goal.  I wanted to be an astronaut growing up as a kid and having CF didn't even cross my mind but seeing the Challenger explosion I thought maybe some other avenue with science.  I loved biology and wanted to do something to give back for all the doctors, nurses and everyone that had helped me during my hospital stays.  I wanted to work in a science lab.  I was told that I should try something not so difficult and major with a general degree.  I refused to let CF or anything involving CF ruin that dream.  I started my pursuit for that Biology degree still not knowing what I was going to do with it but I was going to get it.  My CF started getting bad but I continued going to school sleeping between classes and slowly making it through the week.  I wasn't using oxygen all the time so I was pretty drained.  I got my call to move to North Carolina so school stopped but I had already completed 3 years.  I was transplanted on September 18, 1995.  I moved back home in November and returned to school feeling like a new person with a new life.  My kidneys eventually started failing so I was repeating the sleep breaks between classes but I was feeling more tired than I was pre-transplant.  I had to start dialysis and stop school once again because now we were discussing a kidney transplant.  My dad got tested and was a match so the transplant was going to take place back in North Carolina.  I endured three months of dialysis and moved to North Carolina for my kidney transplant on January 8, 1999.  I was able to return to home and return to school.  It was a tough road but I did receive my Bachelors of Science in Biological Sciences in May of 2000.  I ended up going back to school  seven years later and graduated with another Bachelors of Science in Clinical Lab Sciences.  I also had another kidney transplant on July 1, 2009 which my sister donated this time.  I far exceeded my goals at the time.  I always wanted to go to college and graduate with a Sciences degree to prove to myself and others that CF will not stop me from pursuing my dreams.  I currently work as a Medical Technologist in BloodBank for the Veterans Healthcare Administration and love what I do because now I'm able to give back and its an honor to be serving our Veterans.


How do like to spend your free time? Any hobbies?

I have a few hobbies that I enjoy.  I have always enjoyed cars so I started collecting them as a young kid, first it was Hot Wheels and then the die cast models and mainly exotics.  I also enjoyed the model kit cars and putting them together.  I was fortunate enough to try different things that I found interesting.  Collecting marbles, cars, state issued quarters, trading cards, traveling and trying different sports.  I really enjoyed riding bikes.  It was the only time I felt free and that I was "flying" even though I wasn't fast I felt that my lungs were giving me the air I needed to turn the pedals feeling the wind as I rode wherever I chose.  I still enjoy riding bikes and have completed a few bike events and has become a main staple in my exercise routine and look forward to every time I get a chance to ride.  I now have a road bike and a hybrid and enjoy them both. 


Do you have any goals for the future? 

Goals never stop.  I look at them as reasons to keep fighting for that next day.  You want to prove to yourself that you can accomplish what you set ahead of yourself to finish.  Some goals I have in store are to travel to different destinations around the world, have a family, possibly further my education and become a bloodbank specialist and to watch my nieces continue growing up and fulfilling their dreams.  It has been a dream come true to watch them grow up.  I will see what God has in store for me and enjoy everyday that I am given. 


Silas John - August Rockstar of the Month


Name & Age

Silas John, 6 from Vincennes, Indiana

Favorite food?

Corn on the cob with extra butter and salt!

Favorite thing to do during treatments?

Playing “Think Rolls” (problem solving puzzle game) on Galaxy tablet and watch shows, especially The Polar Express!

Any hobbies?

Playing with trains, riding bikes, swimming, and reading!

How does Silas Rock CF?

He rocks CF by always doing his treatments and taking his medicine, even when it's really gross tasting, doing a poke (blood draws) even though it's not fun, and always staying active. All while being goofy & smiling!

Tell us about the recent triathlon experience!

He rang his bike bell at the kids at the triathlon to let them know to move when he was going to pass them because he is so fast on his bike. He is excited to try it again next year and has already begun training. He completed the entire race without stopping or slowing down!

A little more about Silas!

Silas is a third-year, very grateful recipient of the Kicks Back Program. He has been on 12 different types of trains, he enjoys traveling (just returned from a trip to Folly Beach, SC and Cherokee, NC), he loves exploring and learning about geography, and love capturing life with his camera.  He is an avid musician and has been playing the drums and singing since before age 1, you might catch him in the back room playing loudly to The Black Keys. He loves his little sister, Josie, who is 3, and they play outside every chance they get. His mother, Katie, is the best caretaker, homeschool teacher, cook, and friend that he could ever ask for, and his papa, Nick, is his workout buddy and fellow band-mate. The John family puts Christ first in all they do and is already seeing so many miracles in Silas’ life. The best is yet to come!


Dealing with the Loss of Your CF Spouse

Dealing with the Loss of Your CF Spouse

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I lost my fiancé Ashley “Bea” Briggs due to complications from Cystic Fibrosis a little over a year ago, in early 2017. We met early in the summer of 2015 and fell in love with each other pretty quickly. The next year, we discussed moving in together as the next step in our relationship. It was then that I learned she had Cystic Fibrosis. I had suspected she had some health condition long before, as she coughed frequently and had difficulty with certain physical activities that tax one’s breathing, such as hiking, but I never suspected Ashley had CF because I didn’t know what it was. Even knowing what I know about it now, I still find that CF doesn’t get discussed as often as other conditions despite the fact that it is a life-threatening, progressive disease.

Ashley did not let CF define her nor rule her life; she would only tell people she had CF when she felt comfortable. Even many of her lifelong friends were not aware that she had CF. After she told me, I realized how difficult it was for her to come out and tell me about it. She knew that I would not care in the sense that it would change any of my feelings for her or our relationship, but she of course realized that with a big step like moving in together, that it was important I know. From there, the only thing that changed was that I became the partner of someone with CF.

We moved in together in September of 2016, got engaged in November of that year, began looking at forever homes, and even discussed the possibility of having a baby someday once we were married. During this time from when she told me she had CF to when she eventually passed away, I learned as much about CF as I possibly could and Ashley began to open up to me about it. She realized that we were a team and I would be by her side always, no matter what. I tried not to push her on when it came to her health, or ask too many questions, because of how healthy she always seemed to be and how healthy she had typically been throughout her life living with CF. So, I took my cues on how she was doing from her; if she said she was doing okay, I accepted that because I still did not know enough about CF, or enough about living with someone with CF, to know or deal with it any better than I did or think that I could know more about her condition than she did. I just continued to educate myself about CF as much as I could, and I asked questions whenever something came up, and let her talk to me whenever she felt comfortable.

However, even with the limited knowledge of CF that I had at that point, I could see something was not right in the couple of months before she ended up in the hospital due to a bad case of what we thought was pneumonia at the time. She was getting more infections, losing weight, and having a harder time doing the things she was accustomed to, like walking up the stairs for example. During the last month of her life especially, her struggle had become a topic of daily conversation. Her breathing became more labored and I was getting the sense from her that something just wasn’t quite “right”, and that this time it was more than just “I’m ok”. In the moment though, I always thought she was going to be fine and we’d get through it because we had had some hiccups before and she always bounced back. I just don’t think she truly knew how sick she was until she got to the hospital. When she was admitted to the hospital in late January of 2017, we went in thinking we’d go and get her on IV’s and anti-biotics and we’d nip this latest infection in the bud. Unfortunately, her health and breathing declined rapidly and within just a couple of days she went to being on 24/7 oxygen, to ultimately being put on a ventilator. From there it was a rollercoaster of ups and downs and we thought we had turned a corner, but unfortunately, the infection wouldn’t let go. After a month-long fight in the intensive care unit (ICU), Ashley passed away three weeks shy of her 30th birthday. It felt like we went from lying on the couch watching TV together to her funeral in the blink of an eye. I was devastated, to put it lightly. 

That month in the ICU was the most difficult time of my life, and the year since she passed was not any easier. To be frank, it’s hard to think about it now and how I’ve made it this far. But, like the old saying goes, time does help to heal. Thankfully, my friends and family, including Ashley’s family, have been a great support. I also saw a counselor for the first few months after the loss and joined — and actively engaged with — numerous online groups geared toward CF and spousal loss in general. I also began to exercise 5 days a week and hike, as it really helped to clear my mind and make me feel like I was accomplishing something. I also signed up for a lot of 5K’s in and around the New England area, as Ashley would do these often when she was healthy. The feeling I got after exercise was incredibly fulfilling and so I’ve continued doing them even now. All of this was incredibly helpful in dealing with the loss, and the grief.

Lastly, I also engaged with the Cystic Fibrosis Foundation and its local Massachusetts / Rhode Island chapter, and volunteered at many events. I enjoyed meeting others who have been affected by this disease and who are devoting their time to helping to find a cure. Getting – and staying – involved in the Cystic Fibrosis community was very important to me after Ashley’s passing. I learned that people with CF have to deal with a lot of challenges on a daily basis, and Ashley’s perseverance and zest for life was incredibly inspiring. It sparked something in me to help and do more that I didn’t know was there. This lead to me, along with Ashley’s family, starting a non-profit organization called the Breathe for Bea Foundation in her memory while at the same time achieve our mission of helping to make the lives of individuals and their families that are battling this life threatening disease more manageable by providing financial assistance and support, as well scholarships in her memory. We’ve also started providing hospital care packages to CF patients who have been admitted into the hospital for an extended stay. 

Unfortunately, there is not a lot out there in terms of support for spouses of those with CF specifically, and I hope that changes someday because it’s clear to me that CF spouses are in a unique situation, and we can benefit from the wisdom and experience of others like us. I hope that others like myself will share their stories so that people in our situation can be more informed and thus can be more involved in the treatment plan of their loved one. I also hope to perhaps be able play a role in helping to establish a support system for spouses of people with Cystic Fibrosis so that we can all come together and help each other.

Ashley was an amazing woman who lived her life on her terms, and not CF’s. She accomplished a great deal in her short time here with us and brought joy and happiness to so many. I wish we would have had the future we planned, but I’m grateful for the time we had, and I’m a better person for having known her. I would not change a thing aside from learning more about CF earlier. It’s the one regret that I do have - that I wish I had asked some of those important health questions sooner and pushed a little more. But like I said, I knew she knew more about CF than I did, and I always thought she’d be ok, so I tried not to press her too much. Perhaps I was also a bit afraid of knowing the answers to certain questions. While it’s a regret I have, it’s also something I’ve learned to let go as unfortunately there is nothing I can do aside from sharing my experiences with others in hopes it can help someone else someday. So, I implore you if you are in a similar situation to be persistent and ask those questions. Ashley was forthcoming with me and had even agreed to allow me to come with her to future doctor’s appointments, but I think she had always felt like CF was her problem and wanted to deal with it herself, which meant refusing to let it govern her life or her relationships. That’s the type of remarkable person she was. As a partner of someone with CF, it’s incredibly important to be involved in the treatment process and to get informed as much as possible. Teamwork is vital to keeping your spouse as healthy as possible. 


BIO: Jesse was engaged to a beautiful woman, Ashley Briggs, who passed away in early 2017 due to complications from cystic fibrosis. He lives in Plymouth, Massachusetts. Jesse earned a bachelor of science degree in business administration at Bryant University in Rhode Island, and a master of business administration degree at the University of Massachusetts Boston, majoring in marketing. You can learn more about the foundation her family has created in memory of Ashley, the Breathe for Bea Foundation, which is focused on helping other families like theirs fight Cystic Fibrosis, by visiting https://www.breatheforbea.org/.

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


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.



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!


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.  


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.


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.   


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!