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Real 65 : Dana's Dream Part II

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis. 
It is a place for all those impacted to share their stories. 

Last week, Dana shared part I of her powerful story and the heartbreaking realities she faced. Her words embody the very definition of what it means to be courageous, inspirational, and tenacious. Please take a moment and read Part II of Dana's Dream and let her story inspire your day. 

Dana's Dream Part II

"So I took that leap of faith and in March 2015, I was officially placed on the list and considered active.  I had already been in the hospital since January at that point and I was struggling more than ever.  My body was physically giving up.  My energy was at its ultimate low and whatever energy I did have I used to just keep my body going long enough to hopefully receive new lungs in time.  Being placed on the transplant list was really hard on me mentally.  In fact, just being in the position of a life or death situation was taking its toll.  I had never felt more terrified in my life. There was so much I didn’t know and nothing has ever scared me more than the unknown.  I lived every day wondering whether I would get the call, or whether my life was truly ending.  I spent many of my days crying because I didn’t know how else to deal with it.  My husband stopped working and stayed by my side in the hospital my entire admission.  At home our friends and family members were working hard at creating and putting together fundraisers for future transplant expenses.  I was hospitalized from January 2015 until May 2015.  My hospital room became my own little apartment I decorated and made feel as “home-y” as possible.  The hospital cleaning staff, the dietary staff, and even the transport staff grew to know more then just my name and birthdate.  And of course the doctors, aides, respiratory therapists, and nurses not only became my friends, they became my family.  It was my home away from home. 

In May 2015, after months of many different treatments, there was nothing more that could be done.  I wasn’t getting better, but there was nothing else to do except wait.  Wait for my life saving call.  At this time I was in fact to ill to travel back home, which was four hours away from my hospital, so my husband found an apartment for us to live in, within one weeks time.  I wasn't going home and truth be told I didn’t know if I would ever make it back.

Within two weeks of being discharged from the hospital I was admitted once again.  I knew at this point that this was it.  That I was now so sick that I was either going to be in the hospital until I received my new lungs or I was going to spend my last days there.  It was June 2nd, and I was getting my Chest PT at the time and as I was chatting with my respiratory therapist when I had this weird feeling.  I didn’t put much thought into it until after my PT was finished.  I was sitting in my hospital bed and I looked at my husband and told him that I had a feeling I was going to get a call really soon.  It was such a strong feeling I was scared just talking about it.  Sure enough, the next day on June 3rd, I was told there were a potential set of lungs.  After many phone calls, orders, tests, consents, and a transfer to the main hospital, late that night I was told that my surgery was in fact “a go.”  For months I had this unbelievable fear that I couldn’t shake and right before I found out the lungs were mine, every worry I ever had was gone. It was the craziest, yet most comforting feeling.  I did not know how surgery would go or what path I was headed down, but I chose to have hope and faith.  As I was saying my goodbyes to my husband and family, I was about to be rolled into the operating room and I told them one last thing, “I got this.”  That was the first time in a long time where I truly believed those three words I spoke.  I was rolled into a huge bright white room with several people already setting things up.  I was then transferred from the bed I was in to the surgical table.  I stared up at the white ceiling, surprisingly not anxious, only slightly nervous, but mostly calm.  After I was all prepped and set up, I closed my eyes and prayed.  Praying was nothing new to me, but this was a prayer like I've never said before.  Short, sweet, and to the point. 

In that moment I was finally at peace with whatever may happen, trusting that what I was facing was bigger then me.  I lived my life the best way I knew how for twenty five years. I laughed until my cheeks and tummy hurt, and was given the opportunity to not only love so many people, but to be loved, truly and deeply.  So before I knew it, I heard, "Alright Dana, we are going to take real good care of you, no worries.”  Placing a mask over my nose and mouth, I was inhaling as slowly and deeply as I could, dreaming of the moment that those deep breaths would be effortless.

June 4th 2015.  That was the day that by the grace of God, my life was saved.  A young girl changed my life in the biggest way and I am so grateful for her everyday of my life.  She is my hero and my angel, and I take her with me in all my adventures through my new life. 

My second chance at life has brought me a lot of different emotions.  Some of these feelings I know well and others, I had never felt before.  As time continued on with days and months passing, I saw changes.  Receiving a double lung transplant was an amazing gift, but by far the hardest thing I have ever had to do in my entire life.  It changed a lot of things in me, physically, mentally, and emotionally. I can now understand majority of what I am feeling, but every once in a while some new ones pop up. (Part of the rollercoaster I guess). I went into surgery as one sick young woman who had been suffering and slowing dying. I came out of surgery with not only new lungs but as a new person with a new perspective on life. I was alive and that's when I started truly “living” again.

Today I am speaking to you as a twenty seven year old woman who is proud to say that I am almost sixteen months post double lung transplant!  It has not always been easy.  The doctors had said that there would be problems, just a different set of them.  Since I was transplanted I have dealt with moderate rejection, severe and debilitating allergic reactions, pancreatitis, and severe kidney disease.  But since I was transplanted I have also been able to put away my nebulizer, return my vest, walk, run, dance, and my personal favorite BREATHE! These beautiful lungs I have received have given me sixteen extra months with my husband, family, and friends. There is so much love, and so much laughter, and I have never felt more alive in my entire life.   

So although I have been given new lungs, my time with them is unknown, and I can only hope and pray for the good path.  I want to show people that CF is the real deal. So the only way for me to do that is share my story with the world in hopes that I can help at least one person. Then with continued awareness comes fundraisers and donations to the CF foundation in hopes to one day find a cure. I want to hopefully also show people that there is always going to be "something" in life. With everyone, not just me. It's all in how we handle it. That's when your "true you" comes out. It's okay to be mad or sad, nervous or worried because eventually all those things will lead us back to happiness as long as we let it.

Transplant is no cure for CF, but it buys you more time to be on earth with the people you love and the things you love to do. You can have the chance to go places you've never been, volunteer at a organization, help an elderly man or woman to their car, show random acts of kindness.  Stare at the bright blue sky and watch as birds fly together in the air.  Enjoy watching the leaves on the trees fall softly to the ground, and close your eyes to feel the cool wind and the stunning warm sun on your skin.

I've known, seen, felt, and suffered more then any twenty seven year old woman should have to. But that makes me who I am. CF does not define me. CF is a part of me and has shown me how to have strength, courage, determination, and perseverance.

So I guess the moral of the story to anyone reading this, is to never give up, persevere, never lose hope, and have faith that things will be okay. Don't be afraid to FEEL.  Physically and emotionally. Embrace it with open arms and an open heart.  It took me 27 years to fully understand and comprehend that life is a GIFT, so live it! Human society becomes robotic at times, in return missing all the beautiful things in life.  So next time you are in a grocery store running around like a maniac, driving too fast because you are running late, or simply feeling like your day is slowly getting worse; just stop for a second, close your eyes and truly FEEL what it's like to be calm and content.  Listen to the birds chirp, the wind blowing, or simply find peace in silence.  Then take a deep breath because without those breaths there would be no you, or no life. Then once you do, open your eyes, and if you truly believe it, I guarantee that you will see a whole new beautiful world.  And guess what? It's pretty special."

 

 

-  About Today's Contributor  -

My name is Dana and I am 27 years old. I was born in Philadelphia Pennsylvania, but now live with my amazing husband in beautiful Central PA. 

I am a licensed Cosmetologist which has always been my dream job!  I professionally worked in a salon for many years until my health no longer allowed me to. Now, I do my work for just family members and close friends. I am also a dance instructor. I danced for 15 years as a child, and now have the incredible opportunity to be back as a teacher in the world of dance! Some of my favorite things to do are, watch movies, read, dance, and spend as much time as I can with the people I love! Writing has always been something I have also loved to do and with all my experiences with CF and now transplant, I love sharing my stories with others, in hopes that I can provide hope for others! We need a cure!

You can continue to follow my journey through Facebook by typing in "Dana's Dream Team" which is available for the public to see! I am always so grateful for the continuous love and support! XOXO

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Real 65 : Building Blocks of Every Breath

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis.
It is a place for all those impacted to share their stories. 

 

The Building Blocks of Every Breath

For someone with CF, there are countless hours devoted to every breath - hours of airway clearance therapy, hundreds of neb cups that need to be sterilized, and countless medicine vials that need to be refilled.

 

 

 

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Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Real 65 : Lucas & Chrystal

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis.
It is a place for all those impacted to share their stories.

 

Today's meaningful entry is written by Lucas Moldenhauer, a dear friend and support to Breathe Bravely. He is graciously sharing his story of what it means to love someone with CF - his wife Chrystal,  and the beautiful meaning of her birthday. 

"Do birthdays really need to be painful after someone turns 40?

I turned 40 almost a year ago. My wife, however, can hide behind her ageless beauty. The fact that she chases our 3 year old daughter from one playground to the next with collegiate agility also helps to hide her true age.

Chrystal and I met in college. Looking back now, it seems like a long time ago in a galaxy far, far away.  Chrystal had been diagnosed with Cystic Fibrosis when she was 3 months old. She was well accustomed to the CF curve balls, the loneliness, the marathon, the spiritual struggle of a genetic disease.  I was beginning my CF learning curve.  I can still feel that intensity, that excitement. I can remember learning to anticipate the left hook after the quick right.

Birthdays are different for everyone. For CF patients, they could be just another day of drudgery.  They could be mere painful reminders of lost time or lost friends. Birthdays could also be milestones on a unique marathon of life. When we started dating in college, we didn't know how many birthdays we would celebrate together. But on any journey in life, if you wait for all the lights to turn green before you start, you'll probably never start.

Her birthday last month found her in the hospital for an 18 day visit, in a city far from home. In fact, her hospital of choice is almost at the other end of our time zone. So while Chrystal worked hard doing her 4 long pulmonary therapies each day, listening to the drip, drip, drip of Intravenous Antibiotic Cocktails, I loaded Chrystal's therapy poodle Maggie and our daughter in the car to cross the Mississippi River and head west!  As our 3 year old daughter was practicing her "S" sound, saying MissiSHIPPi, over and over, I started contemplating some of our history with CF, and a list started to form.

You might be old with CF if you remember:

  •         The original VEST machine that actually weighed 100 pounds (and barely fit in the back of our Geo Prizm). We were so glad that each VEST got smaller and smaller. Now they weigh 18 pounds I believe.

You might be old with CF if you remember:

  •         Manual chest percussions. Chrystal and I met on college choir tours, and her close friends were the "percussion team" in the back of the bus, keeping her breathing. When Chrystal would visit my home, my mom would put on the old vinyl Godspell and we would do percussions to the melody of "Prepare Ye the Way!"  Come on now, sing it with me :)

You might be old with CF if you remember:

        Telling your friends not to bother looking up CF in the encyclopedia, because those old dusty things were so outdated they said the patient wouldn't live past 2 years of age. 

You might be old with CF if you can Not remember:

  •         How many Christmases, Easters, Thanksgiving feasts, birthday parties, Family vacations had to be missed because of an urgent hospital stay.

You might be old with CF if you can Not remember:

  •         How many talented, selfless, dedicated, professional doctors, nurses, aides were there during Christmas, Easter, and summer vacation, to give their best care.

They say, you are only old if your list of regrets outnumber your list of dreams.  I believe that's true and that turning 40 can be just as exciting as 18.  When Chrystal and I started dating, we had no idea the huge advancements that were just around the corner.  I believe the future for CF care is more exciting now than ever.

Thanks for being part of the CF community. I can't wait to hear your stories of how CF has improved your perspective on life."

- About Today's Contributor - 

Lucas Moldenhauer loves to travel, encourage, inspire, discover and connect. He and Chrystal got married over 15 years ago while obtaining his Masters. Leaving a legacy for their 3-year-old daughter is important to him.  He aspires to mow many acres of grass with herds of buffalo. 

 

 

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Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Clearly Invisible : The Unseen Side of CF

This segment of the blog will be dedicated to shedding light on the invisible side of CF- striving to spark dialogue, cultivate understanding, and encourage compassion between all of us.

 

Years ago, the effects of CF would manifest themselves visible to the outside world, but in today’s world there are very few telling effects of the destructive disease. CF is considered an invisible disease. Even in the end stages of the disease, CF might only make itself apparent through the need of being tethered to a constant supply of supplemental oxygen and IV polls. But without those accessories we would seamlessly blend into any crowd.

It may be one of the most difficult things about living a life with CF. Even thanks to small pre-portioned antibiotic boluses, we can carry on seemingly normal lives. CF manifests itself beneath the surface of our skin and blindly away from the eyes of the mainstream world. It makes it difficult for others to see the destruction and seriousness happening within our bodies. Thanks to social media and some passionate people willing to open their honest lives living with CF to the world, the invisible side of this disease is being exposed and shared - something that takes great bravery and strength. It also invites loved ones into the unseen side of CF and allows ourselves to freely share who we are.
 

What we see on the outside never tells the entire story of who we really are - for any of us, whether CF is a part of that equation or not. The greatest gift we can give each other is the gift of empathy, and that comes from investing and sharing who we really are with one another. We may not be able to truly understand someone’s life or what they’re going through, but we can embody what those emotions and experiences feel like. We are all connected by the feelings and power of pain, heartache, joy, and happiness.

Here’s to opening the world to the invisible side of CF and bravely sharing our voice. What do you see when you see CF? We'd love to hear from you.
 


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Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

REAL 65 : Befriending a Butterfly with CF

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis.
It is a place for all those impacted to share their stories. 

It is a great privilege to introduce the first entry for Real 65 written by Paige Pearson Meyer. She is a dear friend of Ashley's and is an integral part of the nonprofit, Breathe Bravely. Learn how her life was touched by CF and what it is like to be a friend of someone living with CF. 

 

I remember where I was and the very first thing she said to me. With a smile like a brand-new Phillips bulb, lighting up her whole body, she bounded up to me and said, “Hi, I’m Ashley! And, I just think you’re fabulous on the news!” While flattered, her words were different. They weren’t hollow with recognition. I could feel she meant what she said.

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Three and a half years later, I’m honored to call Ashley Ballou-Bonnema my friend. I look back on our first meeting so fondly, and yet I couldn’t have imagined the richness our friendship would bring to my life. I didn’t know Ashley was living with Cystic Fibrosis. Quite honestly, I knew very little about CF and its vast effect. I didn’t know how it gets its pirate-like hooks into those with the disease, making it difficult to breathe and forming cysts on the pancreas. I didn’t know that so many people are carriers, nearly 1 in 31. I didn’t know about the unbelievable cost of trying to treat the disease. There was so much I didn’t know.

To my great fortune, Ashley was going through a metamorphosis when I met her. For years, she’d wrapped herself up in a tight cocoon, letting few people know about her life with CF. She found her wings by blogging about her experiences. Those blog posts helped open a dialogue between Ashley and me. Curious by nature, I quickly learned that my many questions would be met by self-deprecation. Ashley is quick as a whip, always inserting humor into conversation. She’s also extremely talented at deflecting, shifting the conversation back to something that’s going on in your life. But, I’ve learned that her humor and deflection are often veils to what’s really going on. I’ve learned that the many years of physically battling CF have been just as taxing mentally.

You see CF is devious. In one breath, Ashley’s beautiful soprano voice is clear and captivating. Her spirits are soaring as she shares her gift with the world. In the next breath, Ashley’s core is shaken, trying to fight off another life-threatening infection. Ashley often talks about the seasons and how CF has its seasons too. It’s so amazing to witness, but even on the days her body quakes from thunderous coughing spells, Ashley is grateful. She’s grateful for life. She’s grateful for her adoring husband, her supportive family, and her incredible friends. She’s grateful for the seasons.

Yes, I’ve learned about CF. My education includes things I wish didn’t know. But, what I’ve learned about my friend often causes me to shake my head and smile. Ashley is fearless and courageous. She’s warm and witty. She’s also the most grateful person I’ve ever met.

 

 

- About today's contributor - 


A journalist at heart, Paige Pearson Meyer is a wife, mother, and ardent supporter of Sioux Falls, South Dakota. Paige is also the Communications & Recruitment Manager at DocuTAP. Paige is blessed to serve on the Breathe Bravely board, helping to bring awareness to Cystic Fibrosis.

 

Learn more about Breathe Bravely's founder, Ashley, and her personal journey with Cystic Fibrosis - A Brave Beginning. 

 

 

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Simply CF : A Common Carrier

Cystic Fibrosis is a complex and sometimes confusing disease.
Each installment of Breathe 3-65 called,"Simply CF" will strive to explain the complexities of CF in a concise and accessible way. 

 

A Common Carrier

Approximately 30,000 people in the United States have Cystic Fibrosis. But, did you know that 1 in 31 people in the US are carriers of the CF gene? That’s about 10 million Americans! That could be you!

 

How does someone get CF?

In order to have CF, both parents must be carriers of the CF gene. However, even if both parents are carriers of the CF gene it does not guarantee that the child will have CF. A child must receive a defective CF gene from both carrier parents in order to be diagnosed with CF. If the child receives one defective gene and one normal gene, the child will also be a carrier but will not have CF. If both parents are carriers, there’s only a 25% chance that their child will inherit two sets of the defective gene. Every year, about 1,000 new cases of CF are diagnosed in the United States.

 

What does it mean to be a “carrier?”

A carrier has a single copy of the defective CF gene and a single copy of a normal gene. Carriers do not have Cystic Fibrosis.

 

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Source: Cystic Fibrosis Foundation

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Breathe 3-65

Welcome to Breathe 3-65!

A place for sharing all that is brave, inspiring, and real.  

Listen to find out  more...


What can you expect to see as a part of Breathe 3-65?
 

- Simply CF : the complexities of CF simplified. 

- Clearly Invisible: the Unseen Side of CF

- Real 65 : posts and interviews sharing honest and personal experiences of living with, treating, and loving someone with CF. It is a place for all those impacted to share their stories of struggle, strength, and beauty.

Program Information : details about programs, initiatives, and efforts of Breathe Bravely as a nonprofit organization.

And much more...



Make sure to check back every Tuesday for new postings! 
 


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Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.