Filtering by Tag: lungs

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.

Simply CF : A Month of Awareness

For the 30,000 people in the United States cystic fibrosis doesn't just make its presence known one month out of every year - it is a part of every day of every year. There is no break. There is no simply forgetting about CF. There is no running from it. 

The month of May is specifically dedicated to giving voice to cystic fibrosis and all the lives it unapologetically touches. It's meant to shine a light on the tenacious individuals, families, and friends who tirelessly live with this disease 365 days a year. It's meant to highlight the strength of all those impacted by CF and the relentless dedication to finding a cure.

This month, Breathe Bravely will be sharing ways in which you can support cystic fibrosis. CF may be a powerful force, but its tenacity and strength is no match to the courage and determination embodied by the CF community.  

How are you giving voice to CF this May?

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.

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.

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.

sINgSPIRE : Enrolling

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

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

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

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

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

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

Simply CF : The Gift of Life

Cystic Fibrosis is a complex and sometimes confusing disease. Each installment of Breathe 3-65 called,"Simply CF" will strive to explain the complexities of CF in a concise and accessible way.

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

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

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

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

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

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

Clearly Invisible : A Season of Difficult Decisions

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

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

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

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

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

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

 

 

 

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

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.

sINgSPIRE : A Song for 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

My name is Ashley Ballou-Bonnema and this is my song for CF: 

"The art of singing – it has been woven within every breath of my life for as long as I can remember. As a small child it wasn’t Bugs Bunny I watched in the morning but countless music videos on the original MTV. In those early days I would have never known just how much a love of singing and music would impact my life. How much it would give me life – literally.

Through my years growing up some incredibly inspiring and impactful people came into my life – instilling and cultivating the song that lived within my soul. Music became the very thing I could escape to when the unfairness of life whirled recklessly around me. I remember as a teenager being invigorated by the breath that would pass through my lips filling my lungs and then transforming that very breath into song. I followed that song to college where I studied vocal music and then onto graduate school for a Masters degree in voice. I sang - even when I was told it wasn’t possible. I sang – even when I thought it wasn't possible. I sang – always trusting the song that lived within me and knowing it was all part of something greater than myself.

Today I am a professional musician with a private studio of over 25 voice students. Little did I know all those years ago standing in front of a giant TV screen singing along with MTV just how much that love of singing would give me life. It’s only now after 20+ years and some difficult days that I am I finally able to see the impact of singing on my life and why exactly it’s something I’ve relentlessly clung to. It’s because my life has depended on it.


How does singing help me live my best life with CF?

Work. Work. Work.
My classical training challenges my respiratory system while also strengthening it. For me, I have found singing to be one of the most beneficial ways of airways clearance next to VEST treatments. 

Here’s a glimpse into my morning warm ups with Kalvin. It’s important for me to get the air moving through my lungs and my body breathing deeply. After a nights sleep my lungs are tight and achy. A good morning warm up is filled with lots of exercises that sound like sirens, sighs, and scales - usually lasting a good 20-30 minutes.  

Breathing Deeply.
Singing has taught me how to breathe deeply, and how to use the air I am given most efficiently. Focusing on deep breathing also lends itself to strengthening my core breathing muscles – helping me breathe better, cough better, and have a stronger core. Breathing deeply not only helps me with singing a phrase of music but it also helps combat anxiety I have related to CF.

Looking Within.
Singing and being aware of my breath has instilled a great self-awareness of my respiratory system. It has allowed me to truly connect with my breath and in turn made me very aware of the slightest difference in how my respiratory system is working. This awareness allows me to notice any changes in my respiratory system - hinting at the start of an exacerbation or infection, sometimes even before I experience any other telling symptoms.

Being Happy.
In singing I have found something that not only challenges myself mentally and physically but also fills me with great happiness. There is truly no greater feeling than feeling that air pass through my lips and exchanging it for a song. It’s my definition of happy.

I never could have imagined all those years ago as a young child, teenager, and even college student just how impactful singing would be in my life. I never could have imagined just how life-giving it would be. In conjunction with my regular daily medications and therapies singing has helped to keep me alive. It is my greatest hope to share that very love and the impact of singing with others affected by CF. Maybe it could change their life the way it has changed mine. This is my inspiration and passion for Breathe Bravely's sINgSPIRE."

 

To find out more about sINgSPIRE please check out the sINgSPIRE tab on our website: Breathe Bravely.

 

 

 

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

Simply CF : It's Complicated

Cystic Fibrosis is a complex and sometimes confusing disease.
Each installment of Breathe 3-65 called,"Simply CF" will strive to explain the complexities of CF in a concise and accessible way. 

 

 

CF is a complex disease that does not isolate itself to one specific area of the body. Its primary effects may manifest in the lungs and pancreas, but its devastation can be felt through every major system of the body.

The Lungs - Because of the defective CFTR protein talked about in the previous post, “Simply CF : The Cause Of It All”, the body produces a thick sticky mucus that clogs the airways and respiratory system. This thick mucus is a perfect environment for deadly bacteria and infection to thrive leading to clogged airways, scarring, excessive and recurrent respiratory infections, and decreased lung function.

The Pancreas - Sticky and thick mucus cause plugging in ducts of the pancreas, preventing the release of normal enzymes to aid in digestion and absorption of fats and proteins. This can result in malnourishment and a failure to thrive. Some people with CF have difficulty gaining and maintaining a healthy weight.

Sweat glands - A loss of too much salt through a person with CF's sweat causes an imbalance of vital minerals and dehydration in the body. 

Much More - Because these main organs and systems are directly affected by cystic fibrosis, secondary complications can arise in other vital organs and systems in the body: cardiovascular system, reproductive system, liver, gallbladder, kidneys, CFRD (Cystic Fibrosis Related Diabetes), bowel obstructions, increased risks of cancer, sinusitis and nasal polyps, osteoporosis, and arthritis. 

 CF is a complex and complicated disease that manifests itself differently in every person diagnosed. The disease affects each person in so many different ways making treatment of the same disease in two different people a challenge. It is so important that new treatments continue to be researched and studied - giving insight into CF's complexity that may lead to life-altering treatments for each unique person with CF.  

 

 

 

Source: John Hopkins CF Center- hopkinscf.org

 

 

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.