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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.

Real 65 : Dreaming Pink and Blue

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

At the root of every life are dreams unique to the person who holds them. Much of our lives may follow a similar path but the details that compose them are what make the journey truly unique to its dreamer. But sometimes those dreams are littered with obstacles beyond our control. It's a true privilege to share Trini's story with you today. Most of all, however, it's a privilege to share her dreams with you and how she has not allowed her a life, which could possibly be seen by others as one filled with undeniable obstacles - one being cystic fibrosis. 

"I feel like every decision I have made in my life has prepared me for my diagnosis of Cystic Fibrosis. Obviously I didn’t know that I had this disease for the first 29 years of my life, but I feel like I was prompted to make the decisions that I have to keep myself healthy.

At a young age I was introduced to the world of sickness, but it wasn’t me that was sick. My older sister had “asthma” and was in and out of the hospital with breathing problems. She was on multiple medications and she also was on breathing treatments. I was familiar with the hospital, breathing treatments and antibiotics. When she was 29 years old she was diagnosed with Cystic Fibrosis.

I was a really lucky kid and I hardly got sick. When I was 13 I started getting sinus infections frequently and ended up getting sinus surgery due to the buildup of mucus in my sinus cavities. When I was 14 I had my right fallopian tube removed due to a paratubal cyst; who knows if that was related to my unknown cystic fibrosis. I started swim team in 8th grade and continued to swim all through high school, as I look back now this was the best exercise I could have been doing for my lungs and my sinuses. I was diagnosed at the age of 16 with “exercise induced asthma” because I was constantly coughing up junk during swim practice and swim meets. In my early 20’s I don’t remember getting sick very often except for my struggle with fertility. I had labs drawn, a Hysterosalpingogram (HSG), went on fertility medications, had a second tubal surgery, and finally went to a fertility clinic to start the In-vitro fertilization (IVF) process.

I have always wanted to be a mother, it has been my goal in life, and I have dreamed about having a big family. I was very lucky and got pregnant on my first IVF cycle, with twins nonetheless. My husband and I were so excited. When I started to relax about my pregnancy I started to have complications. I started contracting at 19 weeks, then we lost our little Corbin at 24 weeks. We were devastated. We continued to have complications with bleeding, and more contracting and then at my 29 week appointment our living son's heart rate had dropped way below normal. I was checked in to the hospital and then ended up delivering our son 12 weeks early with an emergency cesarean section. 2 years later we tried getting pregnant again through IVF and got pregnant but miscarried 8 weeks later. After this miscarriage I didn’t want to try to get pregnant again  without getting everything checked out. We found a great high risk pregnancy center and went in for genetic counseling. My older sister had just been diagnosed with Cystic Fibrosis 2 years before and they decided to screen me for the same genetic markers that she had. August 19th 2015 I was diagnosed with Cystic Fibrosis. I would say that starting from the years we were  trying to conceive until this diagnosis were some of the most emotional years of my life. With fertility treatments, miscarriages, burying a child, doctors appointments and then being diagnosed with Cystic Fibrosis; it has surely been an emotional rollercoaster.

Last summer we were approached by my beautiful sister in law, she offered to get implanted and carry our child. I didn’t want to give up on my body and we decided we would implant one embryo in my sister in law and one in me. We are both 26 weeks pregnant and are so excited to complete this journey. I am working closely with my OB, high risk doctors, and my CF team to make sure that the baby and I stay healthy and complete the pregnancy with a healthy baby. Now, my pregnancy hasn’t been the easiest; I bled through the first 18 weeks, started contracting at 20 weeks, and I am on multiple medications. The important thing to remember is that you can’t change what you're given in life but you can control how you look at the challenges you are given. Don’t give up. If there is something in your life that you want, there is a way to get it, or accomplish it. Just because you have Cystic Fibrosis that doesn’t mean anything. Focus on what you can change and what you can do to make life easier, keep yourself healthy and get what you want!

Keep Dreaming! "
 

 - About Today's Contributor - 

Trini is a passionate mom, nurse, writer, and relentless dreamer. To follow her journey of dreaming and becoming a mom go to her blog, Dreaming Pink and Blue.

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 : Jigglyknits

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 Breathe 3-65 is a special Q&A with a remarkable woman that is a part of the CF community. It was so much fun! It's so special to share the stories of people like Jen who are a part the CF community - sharing how they're using their own talents and passions to inspire those around them. 

 

Question- Tell us a little bit about your story.

Answer - My name is Jen, I was diagnosed with CF at age 5, and I’ll be celebrating turning 37 in just a couple of months. I grew up in Casper WY but now live in Bellingham WA (right between Seattle & Vancouver BC). I’ll always be a Wyoming girl at heart, but absolutely love living in the Pacific Northwest.

When I was 2 my mom had heard about CF on the radio during a “kiss your kids” campaign and realized that my extra saltiness fit the description. She took me to a doctor and was told that she was just being a paranoid first time mom and that I was fine. Then a few years later at my pre-kindergarten appointment she mentioned my distended belly to the doctor (a different one) who had me tested for CF.

 

Q - How has CF influenced the person you are today & how you choose to actively live your life?

A - Growing up I was pretty embarrassed about having CF. Since I grew up in pre-social media days and lived in a small town, I was the only one that I knew that had it so I felt very different from the other kids. My CF is fairly mild, so I was always able to hide it and I really only told a few people that were close to me about it.
As I’ve gotten older and I’ve had to integrate more treatments into my routine, I’ve had to make “having CF” more of a part of my life. I am a lot more open about it now, and I don’t really mind telling people that I have it. I started with baby steps by blogging and posting under the name jigglyknits since it gave me some anonymity, but I’ve gotten to the point where I just assume everyone knows that I have CF since I share so much of it on social media now. I’ve also matured enough to realize that the more awareness there is about it, the more fundraising will be done, and a cure can be found.

I never really have, and still don’t, let having CF hold me back from anything. It might make some things more difficult, but not impossible. No matter how much planning and packing for a trip seems like it.

 

Q - Knitting clearly has become something special in your life - what role does it play in your life with CF? Where and why did you learn how to knit?

A - I’ve always loved making things. If it’s some sort of craft, I’ve tried it (or it’s on my list to try). My mom is the same way and was always doing different crafts when I was a kid. She taught me how to cross stitch, crochet, and knit. I didn’t really keep up with knitting, but about 7 years ago I decided that I wanted to give it another try, so I ended up re-teaching myself using videos on the internet. For me, knitting is very therapeutic. Maybe it’s because I have to focus and count while I’m doing it, but when my anxiety starts getting to be too much, I can pick up a project and it really helps to calm me down and get back into a better frame of mind. It’s also portable, so can be brought along to fill the time while waiting around at clinic!

 

Q - What is Jigglyknits & how has this turned into a passion project? How has knitting positively influenced your life and continued journey with CF?

A - Last year when my lung functions started to drop and I had to start doing regular Vest treatments, I was gathering up some knitting supplies to have something to do to pass the time. My husband was watching me and made a comment about how I should sell what I make and donate the money to the CF Foundation, and that I could call it jigglyknits (the name jigglyknits comes from the fact that we have always called the Vest my “jiggly vest”, because of how much it shakes my whole body). As I did my treatment that day I thought a lot about what he said and it just really struck a chord with me. If I was already going to be spending this time helping my health, why not use it to benefit others too?

It also really helps to hold me accountable to doing my treatments, since it gives me a tangible reason and goal to doing them. It’s really made me have to “own” having CF and take better care of myself. Social media is huge too. Through my jigglyknits instagram account I’ve been able to meet and interact with so many other people that have CF that it makes it all feel a little less isolating.


Q - Would you consider sharing your passion for knitting with others with CF and teach them how to knit? A CF knitters group? Jiggly Knitters?

A - When I was in the early planning stages for jigglyknits, I actually envisioned having a team of knitters with CF that made items while doing their treatments. Then with each item that someone bought, they would get a card with information about the person that made it. I don’t really know how to implement it, but I would love to be able to expand to that level.

Logistically, teaching people to knit over the computer might be challenging but I’m definitely open to the idea if there is anyone that would want to join me and be a jiggly knitter!
 

Q - How can people support your shop and purchase or order a Jiggly Knit item?

A - One of these days I’ll get my own website set up, but right now I am selling through etsy at www.jigglyknits.etsy.com.

 

- About Today's Contributor - 

Jen Eastin is a 37 year old from Bellingham, WA living with cystic fibrosis. She is the founder and hands behind Jigglyknits. Find out more about Jigglyknits 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.

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

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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 : Project CF Spouse

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 impact of CF extends far beyond the individual whom is diagnosed with the disease. CF transforms not only a single person but an entire community of friends, family, loved-ones, and spouses. And with a complex disease that can be so incredibly isolating, it's more important than ever to connect and find support in each other. And that is just what Megan Barker is doing. It is with great excitement we share today's guest post written by a stunning example of what it means to love and live as the spouse of someone with CF. People like Megan are making our CF community stronger and more tenacious through a project she founded called "Project CF Spouse." It's a great honor to share her story:

"I think it was around the second or third admission my husband had after we started dating, that I realized that my friends didn’t quite grasp the realities of dating someone with CF.  Questions like “He’s in the hospital AGAIN?” were asked multiple times.  It was hard for me.  I didn’t want to burden him with my fears, as I knew he had his own with each admission and sickness.  I had made lots of friends in the CF Community, mostly parents to kiddos with CF, but not any other spouses.  I really wanted to find someone who I could vent my fears and frustrations to who understood them. 

After a search on the Internet one day, I came across a blog owned by a CF Wife!  I was elated!!  After messaging back and forth, Amanda and I became fast friends!  Shortly after connecting with her, I was given the names of another CF couple by a friend.  I reached out to Kayse and much like with Amanda, a friendship formed fast!!  That’s one thing that I have really seen with the CF community, we are very close!!

I began to connect with other wives and decided to make a group on Faceboook that could serve as a support group for all of us!  It was a great place to ask questions, vent frustrations or just have support from someone who understood.  The group grew and grew!!! It was great!  What started with about four ladies, had grown to over one hundred members!  Each of us were at different places with our journeys with CF and eventually emotions divided the group and it was dissolved. 

After being a part of that group, I saw how important it was to have others who related to the CF Spouse-world.  I spent a lot of time talking with others to see what the most important part of that original group had been and from there, began to lay the groundwork for what would become Project CF Spouse.  In late 2016, Project CF Spouse, a non-profit organization, was established. 

I wanted to be able to take the experiences gained from the amazing women I had met along my journey and grow that into an organization that was designed to provide education and resources, in addition to the support that was so valuable.  I knew that there were lots of new people starting their journeys with their CF spouse (thanks to invaluable research and medications) and I wanted us seasoned spouses to be beacons of hope for them! 

There is so much that I see this organization being able to do!  Our amazing Board has put together some great goals for us and I look forward to working to bring those to fruition as well as continuing to look for ways to use this organization to help anyone who needs it!"

 

"Project CF Spouse is a nonprofit dedicated to educating and supporting spouses of people with CF. The Impact Grant will be used to grow the 150-person group, which started on Facebook, into an organization that will provide educational resources and access to other spouses and people with CF." - Cystic Fibrosis Foundation from "Impact Grant Awardees" Please visit Project CF Spouse on Facebook for more information and to join. 

 

- About Today's Contributor - 

Megan Barker is the Founder of Project CF Spouse! Her husband, Ty, has CF and he is her hero! He was diagnosed when he was 11 after having lots of respiratory issues. He just turned 39!! They have twin little boys who keep them hopping! Megan is a respiratory therapist, which is very handy when you are married to someone with CF!

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.

Real 65 : A Love Story

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. 


CF and Love - it's a complicated, complex, and at times an incredibly heartbreaking journey. But, it also is what makes every breath all the sweeter and so very meaningful. It infuses hope into the past, present, and future.

Today, we are sharing a moving and honest post written by Jessica Bean from her personal blog on Health from the Heart. Jessica, a tenacious woman with CF from Australia, poignantly shares the impact CF has on a relationship, on thinking about the future, on what a life-saving therapy means, and on living with fervent hope. Please enjoy her powerful words.

Orkambi: A Love Story (Part 1) by Jessica Bean

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.

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.

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.

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.

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. 

 

 

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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 : Building Blocks of Every Breath

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

 

The Building Blocks of Every Breath

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

 

 

 

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

Real 65 : Chrystal & Lucy

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 privilege to share Chrystal's words and part of her incredible story with all of you. She is someone I greatly admire for her love of life and the hope she represents. Chrystal is a fellow adult with CF. Her life is filled with beautiful and unique experiences that continue to inspire all who have the great honor of knowing her. 
 

"The year was 2006, and she was the best 500 dollars we ever spent.  I had always wanted my very own dog, so I decided to reward myself for successfully completing another course of IV antibiotics.  Her name was Lucy and she had been abused in her short 10 months of life.  She was so skittish it was cute.  The submissive peeing every time she met someone new was not as cute, I later learned.  But the breeder said, after watching me interact with Lucy, that they would only sell her to someone she trusted.  Lucy showed her trust by leaning into me, ever so slightly, as I sat on the ground next to her.  And so began a four year journey of healing for the two of us.

I hadn't been abused in my 32 years of life, thankfully, but I was feeling beat up by CF.  It seemed like no matter how hard I tried, I still got sick and needed IV antibiotics.  Even when I was "healthy" and not on IVs, the daily regiment of therapies and meds is exhausting.  My compliance was beginning to suffer as I sensed the futility of it all.  Why do a therapy when my lungs are just gonna be full of junk again in a few hours anyway?  Why sit, by myself, surrounded by loud machines that make it impossible to hear my husband?  I felt isolated and lonely during therapy, yet if I tried talking to Lucas it made my therapy ineffective.  I didn't know it, but I needed a companion.  One who wouldn't expect me to talk over the loud machines.  One who would simply be with me while I did therapy.  

The biggest lesson I thought I was learning at that point in my life was the importance of compliance.  My doctor at that time, Warren Warwick, stressed that the more I could effectively cough sputum out of my lungs, the fewer antibiotics he would need to pump into my lungs.  I am so grateful that so many hospitals, including my hospital at that time, allow a patient's pet to come visit them in the hospital.  And so my husband Lucas would bring my companion dog to my bedside, and I found it so relaxing to run my hands over her soft apricot colored coat.  She was a standard poodle so she didn't shed and I never found any of her hair sucked into my therapy machines.  Of course she loved the attention, and would sit by my side for every therapy.  

Here is where the healing happened over the course of our time together, without me realizing it.  Here, in the countless therapy hours, where it was just the two of us.  She changed from a timid dog who didn't even know how to play with a ball in the backyard, to a joyful canine that seemed to smile every time I tossed the toy for her.  And I developed the habit and discipline of doing my prescribed therapies every day.  My gratitude for the vest machine cannot be overstated, and I've become addicted to the feeling of being able to breathe without wheezing.  Doing almost anything to get that "fix," so to speak.  Even doing double therapies because I just love being able to breathe well for the hours in between therapies.

At the time we bought Lucy, we didn't think we could have our own children.  It was almost like she was my kid.  This is the lesson I was really learning, and the healing that was really happening in my heart:  

Lucy was living proof that I could take care of someone other than myself.  

That I am more than just the sum of my therapies and meds.  

That what I do matters, and that caring for another can get me out of the self pity that often accompanies a chronic illness."

 

- 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 more real, brave, and inspiring stories at Real 65. 

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 Daily Dose

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. 

 

 

A Daily Dose

Many people with CF take significant amounts of medication every day to manage their cystic fibrosis. The number of pills, their function, and the combination of such pills are just as unique as the people who take them. 

 

 

 

 

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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.