Filtering by Tag: CF

sINgSPIRE : A Meeting to Remember

Session II of sINgSPIRE is underway with fresh new students and several continuing on from the first session! It's an incredible group of participants and we are so excited to see the amazing progress as students take part in their weekly lessons with their assigned sINgSPIRE instructor. 
 

Zoom, Zoom.

All lessons a part of sINgSPIRE thus far have been done via a platform we use called, "Zoom." It is a video-call service that allows us to see and hear each other with minimal delay and good sound quality. This platform allows sINgSPIRE's participants with CF to take part in the program from all over the United States as our instructors are based out of Sioux Falls, SD. This platform also allows participants with CF to remain in their comfortable environment and do lessons from the comfort of their own home. What has been most amazing are the meaningful relationships between the students and their instructors that so easily have formed through a computer screen while actively taking part in learning the art of singing. 

The Meaningful Meeting

Because our sINgSPIRE students are from all over the country, that makes it difficult for the student and instructor ever to meet face-to-face in the same location. But, this past weekend, our sINgSPIRE instructor, Maren, was traveling for a wedding to the location of one of her current sINgSPIRE students. And a pretty cool thing happened - they got to meet face-to-face and sing together in the same location. I am positive it is a day they both will remember always. 

What we get to share by being a part of sINgSPIRE is pretty amazing and we feel pretty lucky to share this life-changing experience with our participants. We are certain sINgSPIRE's impact will have lasting effects on everyone who is connected to it: student, instructor, supporter, you.  

Don't forget, if you or your child is interested in being a part of sINgSPIRE please sign up via our sINgSPIRE enrollment page. 

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.

Giving Voice to CF - Say Anything...Jewelry by Stephanie Wilde

The most beautiful and meaningful thing about Breathe Bravely is that so many different and strong people have helped breathe life into this organization and made it all it is today. 


Stephanie is one of those people and has been a relentless advocate for Breathe Bravely from its beginning. Stephanie's own dream has been built on telling people's stories and giving them voice. 3 years ago, Say Anything...Jewelry by Stephanie Wilde joined forces with Breathe Bravely and designed its first jewelry line to help give voice to CF. Her incredible designs and meaningful work of artistry have continued to inspire and grow with Breathe Bravely. 40% of sales from the Breathe Bravely jewelry line go to support the mission of Breathe Bravely.

Last week, new designs were added to the exclusive Breathe Bravely jewelry line! Have you checked them out and ordered yours? Limited and one-of-a-kind pieces available in-store right now or order your exclusive Breathe Bravely design by Say Anything...Jewelry by Stephanie Wilde online or via phone!


Fun Facts about the Breathe Bravely Jewelry Line

  • 40% of the sales from this line go to support Breathe Bravely and their mission of Giving Voice to CF.

  • Say Anything Jewelry has a custom Breathe Bravely stamp with our unique logo!

  • Each piece is handmade. Each letter or logo is hand-stamped character by character by Stephanie herself! Making each piece unique and one-of-a-kind. 

New Items:
Collar Stays for the men $62,
Large Rose earrings $40,
Bracelet with teal leather $44,
Small Rose earrings $36.

Call 605-695-3997 to order today!  Limited quantities of each are made/ready to ship or to pick up in store. Shop now online! Use code LOCAL to save $5 on shipping. Make sure to leave your phone # so we can call you when items are available for pick up! Stop into the store in downtown Sioux Falls, order online at www.sayanythingjewerly.com, or shop Etsy. 

A deep and heartfelt thanks to Stephanie, her generosity of time and talent, and helping Breathe Bravely give voice to cystic fibrosis.

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 : CF Adventurers

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

The CF community is comprised of passionate and driven individuals that are dedicated to changing their community for the better. This community is made up of tenacious and caring people who have been diagnosed with CF themselves, family, friends, and individuals who have been touched in some way by CF. Brad Benson, the creator of CF Adventurers, is no exception. Learn about his passion project and how he's making an impact on the CF community. 

"I am the creator of the CF Adventurers website. (www.cfadventurers.org) I myself do not have cystic fibrosis. Cindy, a friend of mine since our days at the University of Rhode Island has a now 13-year-old daughter, Amanda, who has CF. I knew about the disease in its broad outlines prior to finding out about Amanda’s diagnosis, but committed to learn much more as a result of her situation. One thing that I had no awareness of was the fact that people with cystic fibrosis cannot be around each other in close proximity due to cross contamination concerns. This really struck me as poignant and something that would be particularly difficult to deal with. Even now, years after I learned about this aspect of CF life, I find it almost impossible to really understand. So I decided to try to do something about it. CF Adventurers is the result of that effort.


As I stated earlier, I do not have cystic fibrosis. I do, however, have a disability. I have spina bifida and use a wheelchair to get around. Not an ideal circumstance, perhaps, but who among us lives in ideal circumstances, free of difficulty. It is also useful to remember that one’s own issues and problems are not necessarily the toughest challenges people face I found, when I learned that people with cystic fibrosis cannot be around each other without risk to their health, that it made me consider my own situation. I feel no great need to be around other people with spina bifida. But I have the option if I want it, with no risk to me or others I might meet. People with CF do not have this option, and that fact must be hard to come to grips with. It is my hope that CF Adventurers can help bring members of the CF community together, in virtual space even if not in person."

Take a moment to check out CF Adventurers - "This website is meant to be a fun, safe place for people who have cystic fibrosis, their friends, family members, and others to gather. Here, people with CF can chat, experience online adventure, and share thoughts, feelings, hopes, dreams, plans, fears, and strategies... this site is intended to serve as an alternative way of meeting and interacting, even if not in person.  Life should be about options, and CF Adventurers is here to give people with cystic fibrosis the option of connecting online."

 

 

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.

Where it All Began : Fresh Paint

Who would have thought the two simple words "breathe" and "bravely" would come to represent what they do today. On April 1st, 2014 I took a deep breathe and bravely shared my first blog post.

Looking back it is all a bit surreal, and I can still feel the knot in my stomach and the shakiness in my fingers as I hit the "publish" button for the first time. For 60 days straight I blogged about my life with CF. I was open, honest, and real about the beauty and difficult realities my life held - seen and unseen. It's a decision that would impact my life more than I could ever fathom. Thank you to everyone who has been with me every step of the way through this incredible journey and continues to love me for all that I am. Love to you all.

Take a look back at where it all began those three years ago. (Click on the heading)

Breathe Bravely : Fresh Paint

Screen Shot 2017-04-03 at 11.52.35 AM.png

 

Today's post was written by Ashley Ballou-Bonnema.
To learn more about Ashley & Breathe Bravely as a non-profit organization click on the active links!! 

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 : Open Doors

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 greatest of adventures lead you right to where your heart is happiest. A quick spontaneous trip lead to waking up to my favorite people this past weekend. That means some extra med time support - good thing I packed extra new tubing so everyone could get in on neb time. 

Thanks to Kendra for snapping this priceless photo!

Thanks to Kendra for snapping this priceless photo!

I always wonder what their little eyes see and minds think when they see me this way. My first instinct has always been to shut the door and hide myself away from everyone while doing treatments. But a part of sharing my honest life is keeping the door open and letting those I love see and experience with me this life with CF. 

To follow more of Ashley's personal account of living with CF check out her personal blog.

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.

The Joy of Giving

It’s a beautiful thing when people see beyond their differences and join together in a common experience. These days there are plenty of things that threaten to divide our country, society, communities, and even our homes and families. But when we choose to see past our differences and the things that divide and push us apart, something amazing can happen.  Most people have a few universal values that they hold in common and are dear to their hearts. The holiday season gives opportunity to pause, reflect, gather with friends and family, and reconnect with some of those values and experiences.

One of these experiences is the joy of giving.  Parents work hard to keep the secret, the mystery, and the intrigue of Santa alive for as long as possible with their children, both because they love to see the wonder and awe in their children’s eyes, and also because it brings the parents a full heart and much joy to be able to give to their children. Adults keep the joy of giving alive by doing secret Santa exchanges and giving gifts to their friends and family members who likely do not truly need anything, but experiencing the joy of giving urges them to give.

It’s great to give to those we love and are close with- our children, family, and friends. It’s pretty easy to see past our differences with them and give to them out of love. But there are many opportunities to see past our differences with those on a greater scale in our communities and across the country, and to experience the joy of giving at a whole new level.

Today is #GivingTuesday.  Today is an opportunity to connect with the joyous feeling of giving, and to do so by supporting one of a host of worthy groups, causes, and charities. All across our community and country people are doing good. They spend time, energy, resources, and money helping and advancing the lives of others and the state of humanity. They experience the joy of helping others, and today you can join in that joy by giving your support. Today you can embrace the joy of giving. Let us come together under the banner of doing good. Surely, doing good is something we can all agree upon, and today is as good an opportunity as ever to take action- pledge support, pledge resources, pledge money to a cause, group, or charity in your community or in our country that is doing good. 

Donate and put this photo as your temporary profile image or share it to social media to show your support for Breathe Bravely and Giving Tuesday!

This #GivingTuesday may you know the impact of your generosity, support, and the good you share. On this day devoted to the joy of giving, I ask you to consider supporting an organization that strives to give - give voice to CF, that is.  Breathe Bravely just celebrated its year anniversary and we are deeply grateful for each of you and the support you fervently share with us. Breathe Bravely has big dreams that are coming to life by the day and by the moment. This year is going to be an unforgettable year in the life of Breathe Bravely - aspiring to impact so many through its programs like sINgSPIRE, Brave Bundles, and signature Breathe Bravely events. Today, experience with us the joy in giving - giving voice to CF by supporting Breathe Bravely. 

 

Share your voice and - DONATE -

 

Today's Breathe 3-65 entry written by Mark Bonnema. 

 

 

 

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 Gratitude 65 : What Would It Mean?

The month of November on Breathe 3-65 is dedicated to GRATITUDE. Today we are grateful for all the moms and dads who show endless amounts of tenacity and strength in the fight against CF. For their endless hope, drive, and unwavering support we are so very grateful.


Today's guest entry is written by a mother that embodies what it means to be strong, tenacious, and hopeful. Billie is the mother of two brave and energetic girls who have CF. Billie, like all other parents, wishes for nothing more than a cure for her beautiful girls. What would a cure to CF mean to Billie? Read her powerful words in today's Real 65. 

What Would It Mean?

"Rylie came home from kindergarten last week and told me that a kid at school punched her during lunch. A rocket list of questions ensued from my mouth - who? when? has it happened before? did you tell someone? On this particular occasion, by “punch” our occasionally overly dramatic 5 year old meant “accidentally elbowed”.

Nonetheless, that feeling I had when I first thought she might be the target of a bully was familiar. It’s one of the rubber bands in this massive ball of emotions that comes from parenting daughters who deal with the everyday challenges of a rare, genetic disease. I’ve never crossed paths with such an unfair and unrelenting bully as I have with cystic fibrosis.

    It’s the kind that makes my kindergartner go to the back of the line every day at lunch.

    The kind that sprays stuff up my 3 year old’s nose.

    The kind that seeks to shake my daughters every day, with no exception.

And, like most bullies, there are feelings of helplessness. I can work with her school, but I can not change the fact that the pills are necessary. I can teach her how to do her treatments and medications for herself, but sprays up the nose and shaking for hours and inhaling medicine and swallowing dozens of pills is never going to be enjoyable. Bullies like to take control, and so that becomes our mission. To slowly and carefully and intentionally give our daughters a little more say in the how and the when of their treatments and medications. The bully is still going to make them shake and they might feel beat up at times, but giving them the tools they need to take ownership of their disease is currently our best method of defense.

A cure for cystic fibrosis would mean to one day be able to make a call and the bullying stops, to fill a prescription and the bullying stops, to drive to an appointment and it stops. I wouldn’t have to to send her to school wondering if the bully would be particularly mean that day. None of this lurking around on healthy days, looking for a weak moment to strike. No more changing plans or missing out or feeling embarrassed. The bully wouldn’t be waiting at home, or at school, or on vacation or at grandma’s.

    The bully would be gone.

    That’s what a cure would mean to me."

 

 

 

-    About Today's Contributor   - 


Billie, along with her husband Ryan, are tireless advocates for their girls and the CF community. To follow Alexa and Rylie's journey with CF and read more of Billie's powerful words follow her blog "2 Sisters 1 Cure."

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.

5 Tips to Help Protect those with CF this Cold & Flu Season

It’s that wonderful time of year again - the start of cold and flu season. A cold or flu for most can be a nuisance and an inconvenience that lasts one to two weeks and the worst of it lasts just a few days. But for someone with CF it can mean months of oral and IV antibiotics, a trip to the hospital, the loss of lung function, or even fatality. Here are 5 helpful tips to help those you love with CF stay healthy:

  1. Wash your hands. A lot. The best defense against spreading germs and limiting contamination is by making sure your hands are clean. The cold and flu virus can live on your hands without you being infected but you can be spread through everything you touch. Don’t have a sink or soap handy? A dab of hand sanitizer will help protect you and those you love.
     
  2. Cover that cough and sneeze. Recent studies have shown that a cough or sneeze travels much farther than originally thought. Up to 200 times farther!

    Also, it’s been found that certain coughs and sneezes can stay airborne long enough to enter ventilation systems, spreading them further and potentially harming more people. Try coughing into your elbow or a tissue followed by washing your hands or a quick squirt of hand sanitizer.
     
  3. Get a flu shot. When you get a flu shot you’re not only protecting yourself from severe complications of the flu but you’re also protecting those with CF or any other compromised immune system.
     
  4. If you’re sick, please stay home. Just a quick trip to the grocery store or pharmacy when you’re sick can put those of us with CF unknowingly at risk.
     
  5. Have plans with someone with CF and you’ve been sick all week or have a cold? Let your loved one with CF know you haven’t been feeling well (or if someone in your house hasn’t been well), so they can make the tough decision whether or not to keep plans. It’s not fun having to cancel plans because of such a risk but it’s better to be safe than sorry.
     

Help us all stay healthy this cold and flu season! For more information on the dangers of germs and cystic fibrosis please visit our previous post, "Clearly Invisible : Danger."

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 : Dana's Dream Part I

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 Real 65 is a great honor to share with all of you. Dana's passion for life is infectious. It is such gift to have her share her journey of CF with all of us and invite us to walk along side her as she relates her own life to every one of ours. Life with CF is not fair but it still can be incredibly beautiful - Dana's journey is a perfect example of that.
 

“The faster we live, the less emotion is left in the world. The slower we live, the deeper we feel the world around us.”

"As a society we all have something in common.  Although we are all very different, there is one thing that connects us all and that is emotion.  Everyone has their bad days struggling to find the happiness in those moments.  I believe that it's okay to feel sad or angry.  Or maybe you are nervous, anxious, or frustrated.  I believe that all these emotions are important to feel and important to acknowledge.  Having one emotion consume your life while it’s pushing away the others usually ends in ourselves feeling like we are about to explode, or that we are carrying a significant amount of weight on our shoulders. I believe that particular statement even goes for such an emotion as happiness. Sharing and feeling all types of emotions are healthy for the human body and brain. Our multiple emotions is what makes us who we are. It shows us that we are alive. Experience and life itself gives us emotion, therefore molding us into who we are supposed to be.  So as you embark on this journey with me, I would like to welcome you to my emotional roller coaster. 


I was diagnosed with Cystic Fibrosis at three months old.  My parents were twenty two years old and I was their first born.  Talk about an overwhelming amount of news.  The medical staff of doctors and nurses told my parents that it would be very unlikely for me to make it to my eighteenth birthday.  Well here I am today, very proud to say that I am twenty seven years old and have accomplished so much in my life.  My story has been far from boring and although difficult and debilitating situations arose many times, somehow I wouldn’t go back and change any of it even if I could.  I believe that CF; no matter how much physical/emotional stress and torture I have been through, it has somehow helped me become the person I am today.  That I am very proud of.

I am far from perfect, but everything I write is from my heart and it’s honest. I strive to be the best version of me that I can be. Even though on the outside things can look normal, it's what's behind closed doors. That's the real stuff. For a long time I would always try to smile and mask how I would feel physically and mentally. But now, I don't try to be strong for everyone else. I don't lie and put on a show to make people think I'm always doing okay. What you see is what you get. It's not for pity and it's not for attention, it's reality and it's also awareness.


I've felt almost every emotion in the book over these past two and a half (almost three) years. I've broken down, I've spent hours crying, and I've been so angry I’ve wanted to just scream at the top of my lungs. I've been anxious and nervous to the point of my brain feeling like it wanted to explode. I've been in the worst pain of my life to the point that I just wanted to slip into the deepest sleep forever so I wouldn't have to feel anything. With new situations or with unexpected scenarios brought me fear. I've been scared, SO unbelievably scared because for the longest time it was like I was physically watching myself disappear.

But lets start at the beginning.  As a kid growing up, my parents strived to make my life as normal as possible.  I participated in many activities and sports, and if I didn't abide by the rules, I also got in trouble like everyone else.  The approach my parents took due to my situation had its advantages and disadvantages, but I believe that living a “double life” at times allowed me to learn how to understand others better by seeing and experiencing those different ways of life.


When I was around nineteen, twenty, and twenty one years old, I went through my “rebellious” stage, but thankfully I overcame that and saw what was really important.  So I got my act together and from then on I took care of myself the best way I knew how.  No matter what I did though, CF had its own agenda.  A year later is when things became harder, and my life as I knew it was about to change big time.  I was told by my medical team that due to the fact that things were becoming more difficult, and I was getting harder and harder to treat with my extremely resistant bacteria, it was time to look into transplant.  Not exactly the news I wanted to hear and definitely not where I wanted to be in life at twenty four years old.  I set up my appointments for transplant consultation and tried not to think too much about it.


Fast forward a few months later, things were changing and they were changing fast.  I went from being able to span treatment of IV antibiotics from 8 weeks down to 4 weeks.  The amount of time I would have to be on them grew longer, and treatment grew harder.  The need for oxygen grew from only needing it at night to then needing it every day, all day.  I couldn’t drive anymore, I felt awful 95% of the time.  I coughed so much, I literally was unable to breathe at times.  I remember gasping for just the slightest bit of air.  An unbelievably frightening feeling.  I’d cough so hard I would crack ribs which then brought on tremendous amount of pain.  As time continued to go on, I was in pain constantly, all over my body from head to toe. I was on 4-5 liters of oxygen, and I could no longer do much on my own.  I was now twenty five years old and everything I did was a true struggle.  My husband or a family member had to be with me at all times.  I needed help doing the simple things we all take for granted everyday.  Getting out of bed, walking to the bathroom or the kitchen. Bathing, getting dressed, and even brushing my hair was a true challenge.  Life as I knew it was no longer.  I would catch quick glances of myself in the mirror and when I stopped to give a good look I saw someone I no longer recognized.  I wasn’t “living” anymore, I was just simply “existing.”  I was slowly dying and my only hope was new lungs.


Going through transplant consultation was quite the experience.  It was a few days long and it took a toll on me mentally.  My husband and I went through all the classes and appointments and it was a lot to take in.  Not only were we dealing with the fact of my current health state and our lack of options, but we were trying to comprehend and take in so much information on a very important subject and decision.  The most nerve racking but anticipated appointment, was my meeting with my transplant doctor.  I already knew him from clinic and I knew that talking with him was going to answer a lot of questions or concerns I had about the transplant process.  He was very direct and honest with myself and Seth which is something I always appreciated from my all of my doctors.  After consulting with my doctor, I was told that due to my current and personal health situation, I was going to be looking at some possible complications that maybe others without my particular issues, wouldn’t have to necessarily face.  My success rate after the first year of transplant, was about 25% less then other CF patients that weren’t dealing with my particular problem.  After the second year, I was looking at a 50/50 shot.   My heart sank and I felt like I was a balloon slowly deflating.  Not only was I already struggling with the complications of end stage Cystic Fibrosis, I was now being told that my only shot at possible life again was “a roll of the dice.”  Unknown, and impossible to predict.

After the transplant consultation I not only had a lot to think about, but a huge decision to make.  Some of you may be curious as to why I would have to even think about whether I would want to proceed with getting a transplant.  I’m sure most of you would think that it should be a no brainer, being that receiving a transplant was the only shot at my life being saved.  I find that the most common misconception with transplant is the fact that many think it is a cure.  Unfortunately, this is not the case.  Receiving a transplant is without a doubt a wonderful gift, but going through end stage CF and transitioning into transplant is ultimately trading one set of problems for another (as the docs would say).  And when CF reaches its end point, your options are next to none.  It becomes hard for people that are not in this situation to fully understand the emotion and thought that goes into this.  During consultation they suggest that when taking the time to make this decision, that it is something that you are sure about.  Going through a double lung transplant is no walk in the park, and you have to be in the right mindset to take on such a life-changing procedure and event.  Before I went through this process I found myself asking the same questions that you may be.  “Why wouldn't someone choose transplant?”  Because when you get to the point of having to either accept or refuse transplant, your only other option is letting the disease take your life.  It wasn’t until I was sick and dying, that I found the answer to that question.  Cystic Fibrosis is what I sometimes like to call the “invisible disease.”  Most of the time we look, talk, and do things like everyone else.  But on the inside our body is struggling every second of every day to just do the simple things.  Then when severe times strike, we struggle to just exist.  Our life becomes unpredictable and eventually impossible to control.  But every day we fight for our life, because it’s just what we do.  It is all we know.  So to answer the question, I believe that some of us do not choose the transplant route because some of us have simply had enough.  Some of us become too tired and beaten down after all that we have been through.  Others find it easier to get back up after being knocked down multiple times, and then some just struggle more.  So I always say that everyone has a different amount of fight in them.  It doesn’t mean or come down to the fact that certain patients dealing with CF are better or stronger then others, I believe that it just means whatever our individual experiences have entailed, we either feel that we have reached our end point or we believe there is more out there for us.


When it was my turn to make my decision, I had wonderful support from my husband and family members.  They told me that whatever decision I chose they would support me.  I didn’t feel pressured into picking one choice over the other because I knew that they knew that this was something I had to decide for myself whether they agreed or not.  When I talk to people about this particular time in my life I always say that it was the most difficult, yet simplest choice I have ever made.  Confusing way to put it, I know.  I was twenty five years old and for as long as I could remember I have always let CF be apart of my life, not something that ruled my life or defined me.  I was never told that I wasn’t good enough or that I couldn’t do something.  I was always told to follow my dreams, and never let CF take those things away from me.  I was born a fighter.  I have never backed down and after everything I had been through and overcome up until that point, I realized that there was never a choice or decision for me to make.  It was just a realization.  The realization that this was in fact my path and just another chapter in my storybook.  Yes the odds were not quite in my favor and I had no idea what I was really getting myself into, but it was in fact MY only option.  My only option at a chance to live and breathe free."

Please join us next week for part II of Real 65 :  Dana's Dream.  

 

 

 -  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.

Simply CF : A Cause for Celebration

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.


Celebration

While a life with cystic fibrosis may have its share of days that are difficult and burdensome, there are indeed days that are filled with unprecedented celebration in our CF community. With continued hope there surely will be many more days of celebration to come.

This past week on Thursday, September 29 there was cause for great celebration in the world of CF. Orkambi, a specialty medication that treats the underlying cause of cystic fibrosis for people with two mutations of F508del, was approved by the FDA for children as young as six. This news gives such hope to so many families and people with CF. In July of 2015 Orkambi was only approved for people with cystic fibrosis twelve years of age and older.

Orkambi and Kalydeco
There are now two life changing drugs of its type in the fight against CF: Orkambi and Kalydeco. These medications are the first of their kind approved by the FDA in the CF community. These medications do not treat the symptoms of CF but target the underlying cause of CF down to the genes themselves. These medications aim to improve the functionality of the CFTR proteins. They aim to make the mutated genes work more normally in hopes that the progressive debilitating effects of cystic fibrosis will be slowed or minimized. This is not a cure and there’s no guarantee that all who take it will experience a great margin of positive change. But it is surely life changing and something to greatly celebrate. 

Within the last twenty-five years there have been incredible advances in the treatment of CF. Advances that have allowed many of us to live well beyond that in which our parents were told. Advances that allow every day to be a celebration for those of us living with CF. Advances that give us hope that someday all people with CF regardless of their mutations will be eligible for such life-changing drugs. Advances that will give us all another day to celebrate together.

 

For more information about CF mutations and the cause of CF please read: The Cause of it All

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 : A Never-ending Love

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 honor to share today's Real 65 with each of you. It is an honest portrayal of the heartbreaking impact of cystic fibrosis while a beautiful reflection of a person who touched so many lives and continues to. Jessica was an incredible woman with a special zest for life. Her husband, Heybo, reminds us all how precious time is with those we love, how quickly life can change, and the merciless truths of CF. Here is Jessica's story told through the life-changing words of her husband, Heybo:

"Cystic Fibrosis is the illness that took the life of my wife, Jessica. I was married to a wonderful women for 16 years and we were together for 19. I don’t know everything about CF, but I have a good idea about what it is and how it affects the lives of those who love someone with CF. I feel sadness now that “Jay” is gone. I think back to when we met, the times we had together full of smiles and laughter.

When I met Jessica she was lively and outgoing. I knew I had to get to know her. I thought to myself, “here is a woman who stands 5ft 4inches tall full of energy. It is going to be tough keeping up with her.” As the years passed, the more I fell in love with her. Man I miss her.

Jessica shared stories with me about her years growing up. Stories about her surgeries to have some of her intestines removed as a baby because of digestive problems and her parents being told she would be lucky to see the age of 2. I wanted to know everything about her. Through everything she went though the only thing that came to my mind was wondering how she does it- the IVs, portacaths, and surgeries. I thought, “how does someone go through getting poked with needles and being in the hospital so much and still have a bubbly attitude?” One thing I learned is if you tell her she can’t, she will to prove you wrong. A lesson I learned through the years. I came to see what she went through.

We were married in 1999. I began to learn everything I could about her CF, the medications she was taking, the treatments, how often she needed to do treatments, everything I needed to know to be her spokesperson. My knowledge became critical during her final weeks. She shared with me her desires about her health care, what and how she wanted to be cared for while in the hospital if she wasn’t able to speak for herself. We made the best partners.

I will never meet anyone so loving and willing again. For the last 15 years or so of her life we traveled a lot. She loved to live life and not being cooped up. One thing she always said was, “I’m not going to let CF ruin my life.” And she didn’t. I think we both knew that she was slowing down a bit, but she would never tell you. She taught me a lot in our 19years together. So much I couldn’t begin to explain. She loved to go to Arizona and visit family. She always dreamed of the day she could go without her treatments, or at least a weekend without doing them. This dream was never realized.

We would go to Arizona for the winter, for a couple of weeks or even a month. She was very tired of the cold, so we went for the whole winter this year with a trip back home only for Christmas. In February things started to take a turn for the worse. Jay was getting more short of breath. One Saturday morning she woke up with a fever. We waited till Monday to see if she could kick it. She was even worse on Monday so we went to a walk in clinic and she was told she had the flu.

As the days went on she could hardly walk without stopping to catch her breath. We went to the emergency room in Arizona. “Jay” was hurting badly. We decided to leave and head back home where she could see her doctor. I packed as she sat and watched, every breath she took hurt. I drove and she would try to sleep, not with any success. Every rest stop we stopped at I would carry her to the door of the restroom and then back to the pickup. The pain I felt, not from carrying her, but the sadness I felt from helplessness. Watching her tore me apart. We made it passed Denver and she looked at me and said “I can’t breathe!” We came upon Ft. Morgan, CO and an exit for a hospital. I immediately stopped. She was scared, and so was I. They put her out, the last she was able to talk with me for a couple of weeks. After consulting with a doctor, he said she needed to be flown to Sioux Falls. She was taken to the airport and flown to Sioux Falls. I had to drive the 12 hours with our baby, Sedona, a 15-month-old MaltiPoo. Anyone who knows me knows I don’t show a lot of emotion, but when I got in my pickup I cried. It was the longest and saddest drive I have ever done and when I finally arrived to Sioux Falls and saw all the tubes coming out of her I lost it. There was my best friend, lying there and I couldn’t do a damn thing. I couldn’t protect her anymore and it tore me apart. Jay was in the critical care unit.

The first week went by, everyday was tough, touch and go. Her mom and I had to sit down and talk about everything. One thing I should say is Jay was very close to her mom and I would of never make decisions without her. That first week was really tough. Jay was heavily sedated and her kidneys were not working. She was hooked up to a dialysis machine. All I could do was watch. After getting through some terrifying moments, in the middle of week two she made a comeback. They slowly took her off of sedation and she was awake! She couldn’t talk but if she mouthed slowly you could catch most of what she was saying. The end of week two they moved her to acute care. We were even allowed to bring her baby, Sedona, to see her. They started physical therapy and it wore her out but she kept going because that is who she was. She hated defeat. She was smiling, laughing and asking all kinds of questions – her typical self. She was doing great. She still had ups and downs but we all believed she was doing great and making progress.

Then just like that, my whole world fell apart. The doctor told me her blood pressure and heart- rate were dropping. If she crashed they could bring her back but there was nothing more they could do for her. I had to decide if it was time to let her go in peace. I cried. And cried. And cried. It was the hardest thing I have ever done in my life. There was nothing more that could be done for Jay. I did what I never wanted to do: I took her off of the crash list. Which meant if she crashed they would not revive her. By this time I was so numb I didn’t know what I was doing. I was just walking around in a daze. Her body was shutting down and they couldn’t stop it. The decision was made to stop the ventilator.

So on March 18, 2016 my wife of 16 years passed away. There are days I feel lost, but I dig deep to find strength. And what I find is her.

Jay was one of the most fearless people, someone who loved to smile and laugh, who lived her life everyday like it was the last. She taught me a lot. She is the one who she saved me. She taught me how to love, how to have fun, and how to listen to what she had to say (of course, she was always right). That’s the type of women I married. I love you Jay. Always have and always will. "

Please keep Heybo, Jessica's family, and all those who loved her in your continued thoughts. The beauty of Jessica's life will continue to live on through all those she touched. 

 

 

 

Brave Bundles -
Your interest and support of the Brave Bundles has been incredible! Thank you so much for your support in the continued mission of Breathe Bravely. If you sent us a message last week through our Brave Bundle page on our website - thank you! However, we cannot respond like we want to as there was no contact/email address sent along with your messages - just your name. We'd love to be able to send you a message so please send us a message with an email address at breathebravely@gmail.com or Contact us.

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 : An Undeniable Brilliance

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. 

 

An Undeniable Brilliance

Reese, an unstoppable 7 year old with CF.

You can't see the countless hours spent doing treatments, the number of pills taken everyday, or the thick haze left from the nebulizer. The only thing that steals the attention in this photo is the undeniable brilliance of life and beauty that fill it. 

 

 

Stay up to date on all the latest happenings of Breathe Bravely! Follow us on Instagram and like our Facebook Page!

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.

 

 

 

Be the first to know about what's going on at Breathe Bravely and Breathe 3-65!
There's some exciting stuff in the works at Breathe Bravely! Be sure not to miss out by subscribing to our updates/newsletter!

SUBSCRIBE -

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 : Stormy Skies

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

 

The sky above is a vibrant blue with the most picturesque clouds effortlessly floating across its expansive canvas. The sun shines brightly overhead embracing the earth below and warming everything it touches. There’s a gentle breeze – enough to make the prairie grasses sing a soothing sigh of contentment. In that moment all seems perfect.

But how quickly things can change. A storm is coming. The wind switches and the once white clouds become a thick shield of gray – swallowing up the sun’s warming rays. The atmosphere is charged and swirling overhead. The storm is gaining momentum with each passing moment. 

Just within a matter of hours things can change quickly. This is life with cystic fibrosis. Within just a few hours a person with CF can go from feeling great to feeling sick. An exacerbation or infection can come on quickly and sometimes without any forewarning. Such a quick onset can mean having to cancel plans, dedicating time to extra treatments, and visits to the doctor with the potential for IV antibiotics.

With CF this storm is often silent to the outside world. A person with CF may look and act like their usual self but underneath there may be a storm brewing or one actively raging. It’s an invisible storm that can cause irreversible damage and devastation. There’s always the hope that the storm will only bring light rain with a rumble of thunder and not the destructive torrential downpour of an unyielding storm. 

 There are always invisible storms brewing in a life lived with cystic fibrosis. But that same life also has its days that the sky seems endlessly blue without a cloud in the sky and the day finishes just as clear. Those days are deeply cherished.

 

Stay up to date on all the latest happenings of Breathe Bravely! Follow us on Instagram and like our Facebook Page!

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 Hours

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

 

Take a moment and think about your busy life. What time did you get up this morning? Did you fall into bed after a busy day and have to get up extra early for a morning commitment? Most people are free to plan their day according to their liking and commitments, but for people with CF there is much that happens before, after, and in-between the “goodnights” and  “good mornings” just to stay alive.

At the close of an eventful evening spent with friends, when everyone parts way to crawl into their own warm beds for a restful night, many individuals and families with CF know they’ve got another hour before they can think about any shut-eye. When a rambunctious child pleads with their parent to let them play for just a little longer, the parent knows that after that “little bit longer” an Airway Clearance Therapy still awaits them. The morning alarm is set extra early to fit another treatment in before work, school, and taking on the usual demands of a day. Instead of getting some fresh air and a coffee during that afternoon break at work, it is spent doing an ACT. It’s essential that people with CF do several treatments a day of ACT (Airway Clearance Therapy) to keep their lungs most healthy: working most efficiently, loosening thick sticky mucus, and fighting infection. An example of ACT would be a VEST therapy and a neb treatment. The number of treatments and type of ACT done per day varies based upon the unique individual with CF and their specific need. 

So, when you fall into bed tonight after a long and beautiful day, take a deep breath filled with gratitude. Then, take a moment to remember all those still awake, fighting for another beauty-filled day. 

 


Stay up to date on all the latest happenings of Breathe Bravely! Follow us on Instagram and like our Facebook Page!

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 : A Mother's Embrace

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 most powerful force against CF is a mother's love. 

Jill, empassioned CF mom Jennica, beautiful and brave 6 yr old with CF

Jill, empassioned CF mom
Jennica, beautiful and brave 6 yr old with CF

 

 

Be the first to know about what's going on at Breathe Bravely and Breathe 3-65!
Subscribe to receive exciting updates and our newsletter!

SUBSCRIBE -

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. 

 

 

Be the first to know about what's going on at Breathe Bravely and
what's new on Breathe 3-65!

Subscribe to receive updates and new posts!

SUBSCRIBE -

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! 
 


Make sure to never miss a new post! 

Subscribe now and receive a message sent directly to your inbox!
SUBSCRIBE -



 

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.