Clearly Invisible : Fighting the Flu

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.

We are in prime Flu season and this time of year can be a bit unnerving for people with CF. While there's no guarantee I won't catch the flu, I take some extra precautions and implement some thoughtful habits to help protect me throughout this season. Here's my advice for getting through the season: 

  • Wash your hands and use hand-sanitizer often.
     
  • Keep it clean – use a disinfectant daily to keep your living environment clean. Wipe down door handles, light switches, faucets, remotes, keyboards, fridge handles, etc. Keeping these high traffic areas disinfected daily will help the spread of compromising germs that could be detrimental to a person with CF’s health – or anyone whose immune system is compromised.
     
  • Disposable hand towels – It may seem like a small thing but replacing your cloth hand towel in the bathroom with disposable hand towels can help deter the spread of germs. 
     
  • Vitamin D – Find ways to get some extra Vitamin D which during the winter months quickly depletes because of our increased time indoors and lack of sunlight. Make sure to take all your vitamins and eat vitamin rich foods. It’s important for people with CF to take in extra vitamins as our bodies do not efficiently absorb vital nutrients.
     
  • Make weight – My CF team has a catchy phrase when it comes to CF and extra weight: “more fluff, more puff.” I know during Influenza season it’s important for me to be dedicated to maintaining or even gaining weight so my body can better fight off infection. Studies have linked increased BMI to increased or stabilized lung function in CF. A large portion of the CF population has difficulty maintaining and gaining weight which has significant effects on the body’s ability to fight infection and maintain lung function.
     
  • Sinus rinses – Daily sinuses rinses help clear out the sinuses and help flush away possible infection that was breathed in during the day. If I have been around a large crowd or in a busy public area I will make sure and do a sinus rinse as soon as I am able.
     
  • Get adequate rest and stay hydrated – A person with CF uses a significant amount of energy just to breathe and do basic everyday tasks. Becoming worn down and dehydrated can be detrimental to our health and can quickly spiral into an exacerbation.
     
  • Get vaccinated and share the importance of those around you getting vaccinated.
     
  • Keep the distance - during peak flu season be cautious about being around a lot of people and in busy public places. Take the appropriate precautions if heading into crowded areas and weigh the risks of needing to go out. It’s best to keep your distance from large groups of people and places you know may be filled with deadly Influenza germs. Weigh the risks and benefits of heading out and maybe grab a mask, hand sanitizer, and try not to touch your face.
     
  • Speak up – Don’t be afraid to remind people that covering a cough, exposure to illness, and hand washing can mean life or death to people with compromised immune systems – especially respiratory issues like CF. Staying away from people who are sick is the best way to avoid infection.
     
  • Stay connected – Influenza A can be deadly for people with CF. It’s important that if you feel any symptoms to call your clinic or go in immediately. 


     

Today's entry is written from the perspective of Ashley Ballou-Bonnema.

Please consult your CF care team if you have concerns about Influenza A or if you want to make any changes to your CF regimen. For more information about Influenza and CF read "Influenza: Learn How to Stay Healthy" from the 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.

Real 65 : A Testament to 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. 

The complexity of CF extends far beyond the sticky mucus that fills the lungs, pancreas insufficiency, and skin dusted with salt- it's felt within every emotion, relationship, and mood. Living with CF can be both mentally and physically exhausting and that can often times come out upon friends and family. Today's guest post by Chrystal is an honest and real portrayal of the struggles of living with CF and the impact it can have on those closest to her. It also is a great testament to love and always finding gratitude for those who are willing to share in the journey of living with CF. 

"It's happened again.  I'm at the end of a long day of family activities and the exhaustion crept up on me...until it pounced suddenly and I snapped.  I think any mom can relate.  The three year old wants to play dress up with jewelry and I'm too tired to sit up straight.  Let alone see straight to fix the tiny clasp of a necklace.  She doesn't understand why I'm short with her.  She tries though.  She'll ask if I need a therapy, or she'll put her little hand on my chest and close her eyes for a few seconds.  And then announce that I'm all better.  So cute.  

There's a part of me that hates that she has to know I'm sick.  When I'm struggling to breathe or when it hurts to inhale deeply, she watches me closely and seems to understand.  Maybe it's a gift I'm giving her, the gift of empathy.  Of seeing another person in pain and stopping what you're doing so that you can sit and be with them.  

Then there's my husband.  What a saint!  When CF literally takes my breath away and I need a therapy immediately, I can get pretty testy with anyone who gets in my way.  It just feels so urgent, the need to breathe.  And it is urgent.  But I've found there's a difference between what's urgent and what's important.  In the big picture, my need to breathe is not any more important than his need to feel appreciated.  

Even though it means sacrificing his needs at that moment, he consistently does whatever i need so that I can get my therapy done.   I find cf to be a task master at these times, my lungs demanding the relief that comes with airway clearance. So uncompromising, and potentially so hard on a marriage where compromise is essential. My dear husband will postpone his plans if our little girl isn't in the mood to sit through one of mommy's therapies.  They will leave the house so I can focus and do my best therapy possible.

What tears me up is when I catch myself snapping at him because, even though he's sacrificing his plans for the evening, I think he's not moving fast enough.  I forget his very important, though seemingly not urgent, needs.  In my haze of breathlessness I overlook the fact that he needs to hear an encouraging word from me.  A grateful word.  A long, heartfelt embrace.  Those things speak to him and meet his needs.  Even though, in the moment of exhaustion, I feel like I barely have the energy to breathe through my last therapy of the day.  Especially then, I need to pause, look him in the eye, and tell him how much he means to me.  How I couldn't do it without him.  That I like his sense of humor.  That I like him, period.

When we were dating, I told him I might not live long enough to celebrate any meaningful anniversaries.  Like a 10 year anniversary.  My thought was perhaps he would want to choose a different spouse that he could more likely grow old with.  His response, which I'll never forget, was "I don't care if I only get you till you're 30 or 40 or 50.  I want you."  Wow.  So sweet.  He is still the sweetest man I've ever met.  And the most forgiving.  

There are no guarantees in life, and I've learned that first hand.  I thought it was guaranteed that I wouldn't make it to 40 years old.  I thought I would never have a child of my own.  And I thought I could never respect and adore Lucas more than I did when we were dating.  But I find my admiration growing with every selfless act of my faithful husband.  Thank you, Lucas!"

- About Today's Contributor - 

Chrystal is a 42 year old with CF.  She has her degree in elementary education with a minor in family ministry. Her passion is her family: husband of 17 years, Lucas, and three year old daughter, Hadassah Joy.  In her free time, Chrystal enjoys rough housing with her dogs, playing at parks with her daughter, and discovering new restaurants to enjoy with her husband. Read Chrystal's other contribution to Breathe 3-65 - Chrystal & Lucy

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.

sINgSPIRE : CF Foundation Impact Grant

We are so grateful to everyone who has supported the dream and vision of sINgSPIRE and helped to make this program a reality. We are also excited to have the support of the Cystic Fibrosis Foundation and the great honor of being one of their recipients of the Impact Grant.

What is the Impact Grant?


"...Cystic Fibrosis Foundation Impact Grants, a program that provides up to $10,000 per year to individuals or organizations that benefit the cystic fibrosis community.

Ultimately, seven exceptional applicants received grants, from programs devoted to helping people with CF achieve their personal fitness goals, to supporting and educating CF spouses and caregivers. As a person with CF, I was particularly excited to see such dynamic proposals, and I look forward to continuing to grow the Impact Grant program in the years to come. It is therefore with great pleasure that I announce the 2016 Impact Grant awardees. The Foundation is proud to support these organizations in their important missions to benefit our community." - Piper Beatty Welsh, www. cff.org

 

The CF community is filled with passionate individuals striving to make a difference in all they do. Take a look at the official announcement and the other amazing awardees!

Meet the Seven Impact Grant Winners -

 

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 : Voices of 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. 

Coming from a multitude of diverse backgrounds, experiences, and dreams, the cystic fibrosis community is made up of some of the most determined and inspiring individuals. Each journey is as different and unique as they are incredible. Giving their own unique perspective and voice to CF, the CF community is filled with people giving voice to CF through personal blogs. Each blog a telling example of how this disease affects each of our lives so differently, while reminding each of us impacted that we are never alone. 

Want to see the diverse sides of CF and follow other inspirational and honest journeys? Here are six blogs we think you should follow of people living with CF.  Each blog a diverse and honest representation of strength, tenacity, and bravery.
 

Do you have a blog about CF or follow a great CF blog? Share it with us! We'd love to check it out!


Thank you for the great enthusiasm and response to sINgSPIRE! Did you check out the enrollment information? sINgSPIRE Program

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.

sINgSPIRE : Enrolling

It was a big day for Breathe Bravely on Monday, January 9. sINgSPIRE was officially launched - opening enrollment to five new students!

What is sINgSPIRE?
 sINgSPIRe is a 10 week program created specifically for people with CF. It focuses on combatting cystic fibrosis through the art of singing. Enrolled students will be paired with a professional voice instructor and will take part in 10 weeks of individual voice lessons that take place either In-Studio (where available) or via Video-Call. sINgSPIRE instructors will thoughtfully guide each unique student through the sINgSPIRE program that was created for children 5+, teens, and adults with CF. 

Learn more about the sINgSPIRE program and be a part of this life giving program. 

The Driving Force Behind sINgSPIRE
siNgSPIRE was inspired by the powerful impact singing had on our founder Ashley's life with CF. She has realized the significant impact singing has had on her health both physically and mentally and it continues to be a vital part of her health routine. In a previous post she shared her passion for singing and the immense impact it has on her life with CF. Read "A Song For CF" to learn her story and the inspiration for sINgSPIRE.

Enroll Today
It is a great honor to launch this program as a part of Breathe Bravely. Give voice to the song that lives within you and be a part sINgSPIRE! Enroll today to be a part of our next session! Spots are limited to sign up now!

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.

Breathing Bravely: A New Year's Resolution

It’s that time of year again – resolution time. We start the new year with new goals, new aspirations, and a renewed energy to achieve them. Resolutions come in any size and can fit any individual – all seeking to transform us in some way.


We at Breathe Bravely have a New Year's challenge or you. We want to add or be a part of your New Year’s resolution. What do we mean? We challenge you to “breathe bravely” every day. From the simplest and most ordinary of tasks to the most pressing and demanding goals, infuse those two simple yet powerful words into all you do. Because at the very core of who we are lies a single breath that sparks the very life within every one of us - calling for us to be brave. So, whether you have one hundred or just one, make “breathing bravely” an active and thoughtful part of your life and New Year's resolution. We will be with you every breath of the way.

 We’d love to hear how you’re breathing bravely today! Share your voice with all of us while encouraging others to breathe bravely!

- Leave a comment below or find us on Facebook and Instagram. -

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.

Warmest Wishes

As we look back on 2016, Breathe Bravely is immensely grateful for your unwavering support and your enthusiastic spirit for our mission. Thank you for giving voice to cystic fibrosis and helping us breathe bravely!

2017 has the makings to be an extra special and impactful year for Breathe Bravely, and we couldn’t do it without each of you. From Breathe Bravely to each of you – warmest holiday wishes and a happiest new year!
 

Want to make year-end contribution to Breathe Bravely? There's still time! Donate now! A reminder that Breathe Bravely is a 501(c)3 organization and your contribution is a tax deductible.

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 : The Gift of Life

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.

For the CF community, this Fall has been a difficult one with a great number of loved ones lost to cystic fibrosis. It makes us hold those we love living with CF a little tighter and want to fight even harder for every person impacted by the disease. This holiday season undoubtedly will be one filled with some heartache as the memories of those lost pour through minds and hearts of their family and friends. 

Some whose journey ended too soon were awaiting the call for their perfect match of lungs. They were eagerly hoping for the call for a life-saving double lung transplant - a call that did not come in time. For other friends in the CF community they faced chronic rejection post transplant. But thanks to a selfless donor they were given the chance to extend their lives - living boldly and fully with the extra time they were given thanks to a double lung transplant. Without a transplant they would have not been given that second chance at life - even if it were still cut too short due to complications and rejection.

Without question, a double lung transplant at the end stages of CF can be life saving. But the truth is, for those who decide a transplant is the right choice for them there are not enough registered organ donors to fulfill the need that is present. But, we each have the power to change that and honor the lives of those we've lost. Give the gift of life this holiday season - become an organ donor while encouraging your friends and family to do the same. It's a simple gift that will have a lifelong impact.

Register Today: https://www.donatelife.net/

Please take a moment today and remember the beautiful lives that our CF community has lost and keep their loved ones close to your heart this holiday season. 

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 : A Season of Difficult Decisions

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.

It’s that special time of year when we come together to celebrate, sharing laughter, traditions, and memories with our family and friends. Our calendars are filled with holiday celebrations and time with those we love. This time of year holds so much joy and excitement. But for many with chronic illnesses like cystic fibrosis, this time of year can cause a lot of anxiety and disappointment, and it can be filled with heartbreaking decisions.

People with CF are fighting today for the hope of more tomorrows. Sometimes that fight includes making the difficult decision to not attend a holiday celebration due to the risk of compromising their health. You see, this time of year paired with a room bursting with loved ones can be a breeding ground for germs and sickness. Things like the air exchange in a room, how many people are sharing the same air, and what might be thought of as a simple cold or the sniffles can be detrimental to the health of someone with CF. An uncovered cough and the sharing of unwanted germs can lead to days and weeks spent in the hospital, hours of extra treatments, course upon course of potent antibiotics, and the possibility of fewer tomorrows. 

So, how can you help the person you love with CF during this beautiful and memorable season of celebrating? Show your support by:

  1. Letting the person with CF or their parents know if you or anyone attending the celebration have been sick. This includes the common cold or a little cough.
     
  2.  Reminding the person or the parents of the child who may have to make that difficult decision that they are not alone. It’s often easier to make an emotional and difficult decision if we know we have your support and understanding. 
     
  3. Washing your hands more often and covering your cough when your loved one with a compromised immune system (in this case your loved one with CF) is present.

There’s nothing quite like the heartbreak of having to make the decision to miss out on sharing these special days with the ones you love. Our hearts race with anxiety as we weigh the risks of exposure and have to make that difficult decision, mulling over the unfair realities of a life with CF and the perceived disappointment of those we love, if we cannot commit to attending a celebration. Speaking as someone with CF, more than anything we do not want to miss out on such a special time of making new memories or be vacant from the irreplaceable presence of love shared with our friends and family. But, we must be protective of every breath we are given - all in hopes of the chance to spend another holiday sharing in the beauty and love of the season.

 

 

 

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 : White Coats & Stethoscopes

The month of November on Breathe 3-65 is dedicated to GRATITUDE. Today we are grateful for each brother, sister, and friend impacted by CF. For their endless hope, drive, and unwavering support we are so very grateful.

It's inevitable for those you spend the most time with to become a part of your larger family. This is especially true when much of your life has been spent in and out of the cold sterile walls of the hospital and clinic. The nurses, techs, pharmacists, receptionists, and doctors become a special part of your family. In many ways they know your story better than those closest to you. They are with you through the hardest of times and the best of times. In moments of great thanksgiving and in moments of deep desperation. They are the silent servers who sacrifice their own time to give us a chance at more of our own. 

This Thanksgiving please take a moment to remember and give thanks for our tenacious and caring doctors, nurses, pharmacists, techs, and all others who willingly spending time away from their own families and friends to take care of those we love.

With every breath we are given, let us be thankful. 

 

 

- Did you know Breathe Bravely is an Amazon Smile organization? Shop this Black Friday and Cyber Monday for those you love while giving voice to CF. Amazon Smile

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 : Breathe Bravely

The month of November on Breathe 3-65 is dedicated to GRATITUDE. Today we are grateful for each brother, sister, and friend impacted by CF. For their endless hope, drive, and unwavering support we are so very grateful.

"Breathe Bravely and all it has become is something I never could have imagined. This incredible organization started with just a few words rooted in honesty and heart. None of this would have been possible without each of the strong, supportive, and loving voices believing in its possibilities from its very first words. For each of your voices and endless support I am so very grateful. Breathe Bravely is a true reflection of the goodness and strength you have each brought to my life. From the bottom of my heart, thank you."  - Ashley


What's the meaning behind Breathe Bravely's logo?

"An arrow can only be shot by pulling it backward, so when life is dragging you back with difficulties, it means that it's going to launch you into something great, so just focus, and keep aiming." – unknown



Intersecting Arrows: Since the beginning of Breathe Bravely, I have strongly embraced the idea that my life with CF is like an arrow. That with every set back, or difficulty that may be pulling me downward, it only means I am waiting to be propelled into something greater. The two intersecting arrows represent my life and CF. 

Roses: You will see that in the fins of each arrow lies the silhouette of a rose  - one of the arrows even has a rose leaf stemming from the side of it. Cystic Fibrosis is difficult to say and has become known also as "65 Roses" which is now a trademark of the Cystic Fibrosis Foundation. 

Breathe Bravely and its logo have grown into something that represents strength, beauty, courage, bravery, and hope. It represents giving voice to cystic fibrosis. 

*  Breathe Bravely.  Always.


 

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 : Brotherly Love

The month of November on Breathe 3-65 is dedicated to GRATITUDE. Today we are grateful for each brother, sister, and friend impacted by CF. For their endless hope, drive, and unwavering support we are so very grateful.
 

CF doesn't just impact a single person in a family, it impacts every person and part of a family. Today's post is a meaningful entry written by brother, Steve Sveom, in honor of his sister, Chyrstal, who has cystic fibrosis. Read his heartfelt words that genuinely reflect the strength and awe he admires in his sister!

 

Brother Love

"Chrystal Marie is my little sister, but in many ways, I feel like I look up to her. We spent alot of time together growing up, and apart from the manual back percussions that I would help my dad with on her back, Chrystal was just as active as most every other kid on the block. This was before internet, so we played outside alot. We lived in Sturgeon Bay, Wisconsin, and many afternoons were spent playing at the park and then heading to the beach for a swim. I did not think of Chrystal as anything less than my little sister. Chrystal and I went to high school at the same school, and even though I was a little older, and spent alot of time screwing around and playing sports, I tried my best to be a good big brother. Chrystal had many friends in school, and people were, and still are, drawn to her inner strength and outspoken spirit.

After she met and married Lucas, things were a little different, just like they are for all of us after high school and college. Chrystal and Lucas had a life to build together,  and they intended to live it to the fullest. Chrystal has had to focus more on her health during much of that time, but thankfully, with Lucas' help and encouragement, and also the amazing medical advances in therapy machines and medications, they have been happily married for almost twenty years. Their lives have been blessed beyond words with the birth of their daughter, Hadassah Joy, in May of 2013.

Chrystal has always been an inspiration to me. I see her strong will to fight, and to live each day to the fullest boldly. Her faith and her family, Lucas, Hadassah and many other family and friends, all look at Chrystal as a person who has learned to live free of the bonds that CF would want to restrain her to. Chrystal has chosen to live and breathe boldly, 365. I love my sister very much, and I am proud to be her little, um, big brother!"

 

Written and submitted by Steve Sveom.

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 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 : 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.

Clearly Invisible : Cross-infection and Community

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.

324.5 million people live in the United States. The majority of us are seeking to find a community of people in which we belong - sharing similar experiences, thoughts, and friendships. These communities are bonded through deepest empathy - enduring similar journeys of struggle and triumph.

Just 30, 000 people in the United States live with cystic fibrosis. It’s an incredible community all its own, and like so many things that bring a community together CF is no exception. But, did you know it is recommended that people with CF have no physical contact or maintain at the very least a distance of six feet between each other? It is because of the possibility and risk of cross-infection.

Why is cross-infection so important? 
People with CF harbor certain germs and bacteria that can be extremely detrimental to the health of another person with CF. Bacteria and germs in people with CF can vary from person to person, making exposure to one another an important factor in limiting the introduction of new bacteria and germs that could have significant and irreversible effects.  

Isolation & Community
These guidelines have just recently come into practice over the last several years, as scientists and doctors learn more and more about CF. CF is an invisible disease to most people but what is even harder to see is the isolation it creates from the very community of people who truly understand and embody life with the disease. It’s a cruel and unapologetic part of the disease that thankfully has been lessened by today’s use of social media and Facetime – allowing deep friendships to form and a foundation for unprecedented empathy and support. We at Breathe Bravely feel extremely privileged to be a part of the CF community – a place where all who are impacted by the disease can come together and know they are never truly alone.

 

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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 : 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.