Filtering by Tag: medication

Simply CF : Why We Walk

Walking is something that most all of us take for granted and the power of a single step never really crosses our mind. But a simple step for some can symbolize so very much - like for people whose lives have been impacted by cystic fibrosis. 

Great Strides for CF is so much more than just a walk. It's a significant act of empowerment, of tenacity, and of hope. Within each step lies an untouchable determination dedicated to fighting for those with CF. Fighting to give everyone impacted by CF another day to pursue and live out their dreams uninhibited by a disease vying to steal every breath. 

The Cystic Fibrosis Foundation was established in 1955 and has been at the forefront of drug research and development - leading to decades being added to the lives of people with CF. Because of the fervent support of friends and family of those with CF, the CF Foundation has been able to invest in the futures of those living with the disease - being on the cutting edge of research and a cure. Without this continued support and the creation of these life-extending therapies, many of our lives would be immensely different. It's safe to say that some of us may not be here today without such support. Each step that has been taken in the last 30+ years has made a significant impact on each life that is affected by CF. It is for each step we are so thankful.

But we are not finished.

Life-changing therapies and drugs are being created at this very moment. Drugs that could potentially give us the possibility of more steps. Walk with us this Great Strides season. Take a step for CF and every person whose life has been changed because of the disease.

Learn more about the CF Foundation.
Learn more about Drug research and the current Drug Pipeline

To learn more about Great Strides or donate to a team click: Great Strides Team 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.

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.