Filtering by Tag: Brave

Breathe Bravely Backyard Bash

It happens once a year. After a morning of walking to support the Cystic Fibrosis Foundation and their tireless endeavor to finding life-extending therapies and cure for those living with CF, our backyard is transformed into a gathering place for a night of celebrating Breathe Bravely. A night celebrating each of you that has helped give life and breath to this organization and made it sing.

This night was something truly special. The energy in the backyard was contagious to anyone who walked through its gates. It was an atmosphere that enveloped you in pure happiness: live music from beneath the pergola, awesome pizza, amazing friends, and a simple cause that was alive in every person present. From beneath the giant tent and backyard you could hear laughter from all the kids, the crash of giant Jenga blocks, and an abundance of joy. Most of all, there was an unmistakeable hum of excited conversation - dialogue that buzzed around the incredible milestones achieved by Breathe Bravely this past year. 

BRAVE BUNDLES:
In the last year, Breathe Bravely has sent out 20 Brave Bundles to individuals across the United States in need of an extra boost of bravery and support during a difficult time. Find out more about our Brave Bundles and send us a message with the name of someone you know that might be in need of a Bundle: Brave Bundles.

IMPACT:
This year, Breathe Bravely was awarded an incredible opportunity. Our organization was the recipient of the Cystic Fibrosis Foundation Impact Grant - a grant allowing Breathe Bravely to see its dreams of sINgSPIRE take shape and come to life.

sINgSPIRE:
In February of 2017, Breathe Bravely's sINgSPIRE program was underway. The first 5 students had a successful and meaningful 10 weeks with their assigned sINgSPIRE voice instructor - together combatting cystic fibrosis through the art of singing. This week, 5 new sINgSPIRE students will be assigned to one of our brilliant sINgSPIRE instructors and the next session will be underway! We are off to an amazing start with this Breathe Bravely original program and it couldn't have been possible without you and your fervent support! Learn more about our program and submit an application today.

GIVING VOICE
Over the last year, Breathe Bravely has had the amazing opportunity to use its voice - creating meaningful dialogue and building a community among those impacted by cystic fibrosis. Most importantly, we have continued to simply find and share the beauty that lives within every breath we each are given. 

None of this would have been possible or continue to be possible without each of you, your unwavering support, and belief in our mission. Thank you for being right next to us every breath of the way. It's amazing what can happen in a year, and we are just getting started. 

If you'd like to learn more about Breathe Bravely, donate to our mission, or send us a message please explore our website!

 

 - THANK YOU - 

A huge thank you to Jordan & Stacey at Big Top Tent Rentals for their heartfelt generosity. Thank you for taking such good care of us, keeping us cool, and helping us transform our backyard into some place truly unforgettable for the Breathe Bravely Backyard Bash.

As always, the music made the evening and it couldn't have been more meaningful. Thank you to dear friends of mine and advocates of Breathe Bravely, Martha & Mr. Stai. What you both shared that evening was absolutely priceless and so meaningful. Thank you!

One of my favorite elements of the evening, of course, was the food. Not only was the food delicious and so fun to partake in, but the people who made it are what made it so special. The wood-fired pizza and the genuine kindness shown by Kyle & Nicky at Skipping Stone Mobile Wood Fired Pizza is something that helped make the celebration so memorable. 

Speaking of food, we cannot forget what has become the signature dessert of our event: the Red Velvet Cake made by Darla. Not only is it delicious but it's made with the most genuine of love, making it all the more unforgettable.

Most of all, however, thank you to everyone who came out and celebrated with Breathe Bravely and to each of you whom so passionately support us. We are so very grateful for each of you and your generosity. I hope this year's Breathe Bravely Backyard Bash was a fun and special night for each of you! Here's to an incredible year ahead.

 

Truly grateful,

Ashley

 

 

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.

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 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 : An Undeniable Brilliance

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

 

An Undeniable Brilliance

Reese, an unstoppable 7 year old with CF.

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

 

 

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

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

Real 65 : 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.