Filtering by Tag: Invisible Disease

Clearly Invisible : CF Adventurers

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.

The CF community is comprised of passionate and driven individuals that are dedicated to changing their community for the better. This community is made up of tenacious and caring people who have been diagnosed with CF themselves, family, friends, and individuals who have been touched in some way by CF. Brad Benson, the creator of CF Adventurers, is no exception. Learn about his passion project and how he's making an impact on the CF community. 

"I am the creator of the CF Adventurers website. (www.cfadventurers.org) I myself do not have cystic fibrosis. Cindy, a friend of mine since our days at the University of Rhode Island has a now 13-year-old daughter, Amanda, who has CF. I knew about the disease in its broad outlines prior to finding out about Amanda’s diagnosis, but committed to learn much more as a result of her situation. One thing that I had no awareness of was the fact that people with cystic fibrosis cannot be around each other in close proximity due to cross contamination concerns. This really struck me as poignant and something that would be particularly difficult to deal with. Even now, years after I learned about this aspect of CF life, I find it almost impossible to really understand. So I decided to try to do something about it. CF Adventurers is the result of that effort.


As I stated earlier, I do not have cystic fibrosis. I do, however, have a disability. I have spina bifida and use a wheelchair to get around. Not an ideal circumstance, perhaps, but who among us lives in ideal circumstances, free of difficulty. It is also useful to remember that one’s own issues and problems are not necessarily the toughest challenges people face I found, when I learned that people with cystic fibrosis cannot be around each other without risk to their health, that it made me consider my own situation. I feel no great need to be around other people with spina bifida. But I have the option if I want it, with no risk to me or others I might meet. People with CF do not have this option, and that fact must be hard to come to grips with. It is my hope that CF Adventurers can help bring members of the CF community together, in virtual space even if not in person."

Take a moment to check out CF Adventurers - "This website is meant to be a fun, safe place for people who have cystic fibrosis, their friends, family members, and others to gather. Here, people with CF can chat, experience online adventure, and share thoughts, feelings, hopes, dreams, plans, fears, and strategies... this site is intended to serve as an alternative way of meeting and interacting, even if not in person.  Life should be about options, and CF Adventurers is here to give people with cystic fibrosis the option of connecting online."

 

 

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

Where it All Began : Fresh Paint

Who would have thought the two simple words "breathe" and "bravely" would come to represent what they do today. On April 1st, 2014 I took a deep breathe and bravely shared my first blog post.

Looking back it is all a bit surreal, and I can still feel the knot in my stomach and the shakiness in my fingers as I hit the "publish" button for the first time. For 60 days straight I blogged about my life with CF. I was open, honest, and real about the beauty and difficult realities my life held - seen and unseen. It's a decision that would impact my life more than I could ever fathom. Thank you to everyone who has been with me every step of the way through this incredible journey and continues to love me for all that I am. Love to you all.

Take a look back at where it all began those three years ago. (Click on the heading)

Breathe Bravely : Fresh Paint

Screen Shot 2017-04-03 at 11.52.35 AM.png

 

Today's post was written by Ashley Ballou-Bonnema.
To learn more about Ashley & Breathe Bravely as a non-profit organization click on the active links!! 

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

Clearly Invisible : Fighting the Flu

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

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

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


     

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

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

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

Real 65 : 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.

The Joy of Giving

It’s a beautiful thing when people see beyond their differences and join together in a common experience. These days there are plenty of things that threaten to divide our country, society, communities, and even our homes and families. But when we choose to see past our differences and the things that divide and push us apart, something amazing can happen.  Most people have a few universal values that they hold in common and are dear to their hearts. The holiday season gives opportunity to pause, reflect, gather with friends and family, and reconnect with some of those values and experiences.

One of these experiences is the joy of giving.  Parents work hard to keep the secret, the mystery, and the intrigue of Santa alive for as long as possible with their children, both because they love to see the wonder and awe in their children’s eyes, and also because it brings the parents a full heart and much joy to be able to give to their children. Adults keep the joy of giving alive by doing secret Santa exchanges and giving gifts to their friends and family members who likely do not truly need anything, but experiencing the joy of giving urges them to give.

It’s great to give to those we love and are close with- our children, family, and friends. It’s pretty easy to see past our differences with them and give to them out of love. But there are many opportunities to see past our differences with those on a greater scale in our communities and across the country, and to experience the joy of giving at a whole new level.

Today is #GivingTuesday.  Today is an opportunity to connect with the joyous feeling of giving, and to do so by supporting one of a host of worthy groups, causes, and charities. All across our community and country people are doing good. They spend time, energy, resources, and money helping and advancing the lives of others and the state of humanity. They experience the joy of helping others, and today you can join in that joy by giving your support. Today you can embrace the joy of giving. Let us come together under the banner of doing good. Surely, doing good is something we can all agree upon, and today is as good an opportunity as ever to take action- pledge support, pledge resources, pledge money to a cause, group, or charity in your community or in our country that is doing good. 

Donate and put this photo as your temporary profile image or share it to social media to show your support for Breathe Bravely and Giving Tuesday!

This #GivingTuesday may you know the impact of your generosity, support, and the good you share. On this day devoted to the joy of giving, I ask you to consider supporting an organization that strives to give - give voice to CF, that is.  Breathe Bravely just celebrated its year anniversary and we are deeply grateful for each of you and the support you fervently share with us. Breathe Bravely has big dreams that are coming to life by the day and by the moment. This year is going to be an unforgettable year in the life of Breathe Bravely - aspiring to impact so many through its programs like sINgSPIRE, Brave Bundles, and signature Breathe Bravely events. Today, experience with us the joy in giving - giving voice to CF by supporting Breathe Bravely. 

 

Share your voice and - DONATE -

 

Today's Breathe 3-65 entry written by Mark Bonnema. 

 

 

 

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

Real 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.

Clearly Invisible : Cross-infection and Community

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

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

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

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

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

 

- Follow Breathe Bravely on Instagram & Facebook -

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

Real 65 : A Never-ending Love

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

 

It is a great honor to share today's Real 65 with each of you. It is an honest portrayal of the heartbreaking impact of cystic fibrosis while a beautiful reflection of a person who touched so many lives and continues to. Jessica was an incredible woman with a special zest for life. Her husband, Heybo, reminds us all how precious time is with those we love, how quickly life can change, and the merciless truths of CF. Here is Jessica's story told through the life-changing words of her husband, Heybo:

"Cystic Fibrosis is the illness that took the life of my wife, Jessica. I was married to a wonderful women for 16 years and we were together for 19. I don’t know everything about CF, but I have a good idea about what it is and how it affects the lives of those who love someone with CF. I feel sadness now that “Jay” is gone. I think back to when we met, the times we had together full of smiles and laughter.

When I met Jessica she was lively and outgoing. I knew I had to get to know her. I thought to myself, “here is a woman who stands 5ft 4inches tall full of energy. It is going to be tough keeping up with her.” As the years passed, the more I fell in love with her. Man I miss her.

Jessica shared stories with me about her years growing up. Stories about her surgeries to have some of her intestines removed as a baby because of digestive problems and her parents being told she would be lucky to see the age of 2. I wanted to know everything about her. Through everything she went though the only thing that came to my mind was wondering how she does it- the IVs, portacaths, and surgeries. I thought, “how does someone go through getting poked with needles and being in the hospital so much and still have a bubbly attitude?” One thing I learned is if you tell her she can’t, she will to prove you wrong. A lesson I learned through the years. I came to see what she went through.

We were married in 1999. I began to learn everything I could about her CF, the medications she was taking, the treatments, how often she needed to do treatments, everything I needed to know to be her spokesperson. My knowledge became critical during her final weeks. She shared with me her desires about her health care, what and how she wanted to be cared for while in the hospital if she wasn’t able to speak for herself. We made the best partners.

I will never meet anyone so loving and willing again. For the last 15 years or so of her life we traveled a lot. She loved to live life and not being cooped up. One thing she always said was, “I’m not going to let CF ruin my life.” And she didn’t. I think we both knew that she was slowing down a bit, but she would never tell you. She taught me a lot in our 19years together. So much I couldn’t begin to explain. She loved to go to Arizona and visit family. She always dreamed of the day she could go without her treatments, or at least a weekend without doing them. This dream was never realized.

We would go to Arizona for the winter, for a couple of weeks or even a month. She was very tired of the cold, so we went for the whole winter this year with a trip back home only for Christmas. In February things started to take a turn for the worse. Jay was getting more short of breath. One Saturday morning she woke up with a fever. We waited till Monday to see if she could kick it. She was even worse on Monday so we went to a walk in clinic and she was told she had the flu.

As the days went on she could hardly walk without stopping to catch her breath. We went to the emergency room in Arizona. “Jay” was hurting badly. We decided to leave and head back home where she could see her doctor. I packed as she sat and watched, every breath she took hurt. I drove and she would try to sleep, not with any success. Every rest stop we stopped at I would carry her to the door of the restroom and then back to the pickup. The pain I felt, not from carrying her, but the sadness I felt from helplessness. Watching her tore me apart. We made it passed Denver and she looked at me and said “I can’t breathe!” We came upon Ft. Morgan, CO and an exit for a hospital. I immediately stopped. She was scared, and so was I. They put her out, the last she was able to talk with me for a couple of weeks. After consulting with a doctor, he said she needed to be flown to Sioux Falls. She was taken to the airport and flown to Sioux Falls. I had to drive the 12 hours with our baby, Sedona, a 15-month-old MaltiPoo. Anyone who knows me knows I don’t show a lot of emotion, but when I got in my pickup I cried. It was the longest and saddest drive I have ever done and when I finally arrived to Sioux Falls and saw all the tubes coming out of her I lost it. There was my best friend, lying there and I couldn’t do a damn thing. I couldn’t protect her anymore and it tore me apart. Jay was in the critical care unit.

The first week went by, everyday was tough, touch and go. Her mom and I had to sit down and talk about everything. One thing I should say is Jay was very close to her mom and I would of never make decisions without her. That first week was really tough. Jay was heavily sedated and her kidneys were not working. She was hooked up to a dialysis machine. All I could do was watch. After getting through some terrifying moments, in the middle of week two she made a comeback. They slowly took her off of sedation and she was awake! She couldn’t talk but if she mouthed slowly you could catch most of what she was saying. The end of week two they moved her to acute care. We were even allowed to bring her baby, Sedona, to see her. They started physical therapy and it wore her out but she kept going because that is who she was. She hated defeat. She was smiling, laughing and asking all kinds of questions – her typical self. She was doing great. She still had ups and downs but we all believed she was doing great and making progress.

Then just like that, my whole world fell apart. The doctor told me her blood pressure and heart- rate were dropping. If she crashed they could bring her back but there was nothing more they could do for her. I had to decide if it was time to let her go in peace. I cried. And cried. And cried. It was the hardest thing I have ever done in my life. There was nothing more that could be done for Jay. I did what I never wanted to do: I took her off of the crash list. Which meant if she crashed they would not revive her. By this time I was so numb I didn’t know what I was doing. I was just walking around in a daze. Her body was shutting down and they couldn’t stop it. The decision was made to stop the ventilator.

So on March 18, 2016 my wife of 16 years passed away. There are days I feel lost, but I dig deep to find strength. And what I find is her.

Jay was one of the most fearless people, someone who loved to smile and laugh, who lived her life everyday like it was the last. She taught me a lot. She is the one who she saved me. She taught me how to love, how to have fun, and how to listen to what she had to say (of course, she was always right). That’s the type of women I married. I love you Jay. Always have and always will. "

Please keep Heybo, Jessica's family, and all those who loved her in your continued thoughts. The beauty of Jessica's life will continue to live on through all those she touched. 

 

 

 

Brave Bundles -
Your interest and support of the Brave Bundles has been incredible! Thank you so much for your support in the continued mission of Breathe Bravely. If you sent us a message last week through our Brave Bundle page on our website - thank you! However, we cannot respond like we want to as there was no contact/email address sent along with your messages - just your name. We'd love to be able to send you a message so please send us a message with an email address at breathebravely@gmail.com or Contact us.

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

Real 65 : An Undeniable Brilliance

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

 

An Undeniable Brilliance

Reese, an unstoppable 7 year old with CF.

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

 

 

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.

Simply CF : Signs & Symptoms

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.

Even though CF is an invisible disease on the outside the symptoms and complications associated with the disease are not. Breathe 3-65 has shared the complications of CF in our previous post Simply CF : It’s Complicated but what are some of the specific signs and symptoms of CF?

Cough – Because CF impacts the lungs and causes extra thick, sticky mucus to build up in the body, the respiratory system’s defense amidst such irritation and complications is persistent coughing. Coughing is the body's way of trying to move the mucus up and out, clearing the airways. With this extra irritation can come wheezing and breathlessness.

Poor Growth – That thick, sticky mucus also affects the pancreas and its ability to effectively work to produce enzymes. Without those key enzymes the body is unable to adequately take in vital nutrients and effectively digest food. This can lead to malnourishment and can stunt development.

Respiratory Complications – That excess of thick, sticky mucus in the lungs is a perfect place for bacteria and infection to thrive, causing frequent lung infections such as pneumonia or bronchitis. It can also cause people to have frequent issues and infections associated with the sinuses.

Salty Skin – Before there was even such a name for it, parents of children with CF would note a salty taste to their children's skin when they would kiss them. CF causes the body to produce an imbalance of chloride in the body making sweat extra salty.

Digestive Complications – Because of complications with the pancreas, problems with digestion are common. This complication then causes difficulties with bowel movements, frequent greasy or bulky stools, or intestinal blockages.

The body is incredibly complex. Systems within our body work both simultaneously together and separately for the same ultimate purpose – to live. Much of what keeps each of us alive takes place beneath the surface of our skin and is invisible to the unknowing eye. CF is an invisible disease and most of its symptoms are equally invisible to the eye. However, the symptoms and signs of CF are anything but invisible within the bodies of those affected. 

 

 

Only a doctor or trained medical professional can diagnose cystic fibrosis. For further questions or to discuss symptoms in detail please contact your doctor.

Source: CFF.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.

Clearly Invisible : Stormy Skies

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.

 

The sky above is a vibrant blue with the most picturesque clouds effortlessly floating across its expansive canvas. The sun shines brightly overhead embracing the earth below and warming everything it touches. There’s a gentle breeze – enough to make the prairie grasses sing a soothing sigh of contentment. In that moment all seems perfect.

But how quickly things can change. A storm is coming. The wind switches and the once white clouds become a thick shield of gray – swallowing up the sun’s warming rays. The atmosphere is charged and swirling overhead. The storm is gaining momentum with each passing moment. 

Just within a matter of hours things can change quickly. This is life with cystic fibrosis. Within just a few hours a person with CF can go from feeling great to feeling sick. An exacerbation or infection can come on quickly and sometimes without any forewarning. Such a quick onset can mean having to cancel plans, dedicating time to extra treatments, and visits to the doctor with the potential for IV antibiotics.

With CF this storm is often silent to the outside world. A person with CF may look and act like their usual self but underneath there may be a storm brewing or one actively raging. It’s an invisible storm that can cause irreversible damage and devastation. There’s always the hope that the storm will only bring light rain with a rumble of thunder and not the destructive torrential downpour of an unyielding storm. 

 There are always invisible storms brewing in a life lived with cystic fibrosis. But that same life also has its days that the sky seems endlessly blue without a cloud in the sky and the day finishes just as clear. Those days are deeply cherished.

 

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 : 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. 

 

 

 

 

Be the first to know about what's going on at Breathe Bravely and Breathe 3-65!
Subscribe to receive exciting updates and our newsletter!

SUBSCRIBE -

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 : The Unseen Hours

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.

 

Take a moment and think about your busy life. What time did you get up this morning? Did you fall into bed after a busy day and have to get up extra early for a morning commitment? Most people are free to plan their day according to their liking and commitments, but for people with CF there is much that happens before, after, and in-between the “goodnights” and  “good mornings” just to stay alive.

At the close of an eventful evening spent with friends, when everyone parts way to crawl into their own warm beds for a restful night, many individuals and families with CF know they’ve got another hour before they can think about any shut-eye. When a rambunctious child pleads with their parent to let them play for just a little longer, the parent knows that after that “little bit longer” an Airway Clearance Therapy still awaits them. The morning alarm is set extra early to fit another treatment in before work, school, and taking on the usual demands of a day. Instead of getting some fresh air and a coffee during that afternoon break at work, it is spent doing an ACT. It’s essential that people with CF do several treatments a day of ACT (Airway Clearance Therapy) to keep their lungs most healthy: working most efficiently, loosening thick sticky mucus, and fighting infection. An example of ACT would be a VEST therapy and a neb treatment. The number of treatments and type of ACT done per day varies based upon the unique individual with CF and their specific need. 

So, when you fall into bed tonight after a long and beautiful day, take a deep breath filled with gratitude. Then, take a moment to remember all those still awake, fighting for another beauty-filled day. 

 


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 : A Mother's Embrace

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 most powerful force against CF is a mother's love. 

Jill, empassioned CF mom Jennica, beautiful and brave 6 yr old with CF

Jill, empassioned CF mom
Jennica, beautiful and brave 6 yr old with CF

 

 

Be the first to know about what's going on at Breathe Bravely and Breathe 3-65!
Subscribe to receive exciting updates and our newsletter!

SUBSCRIBE -

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 : Danger

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.

 

The world is a big beautiful place, fraught with possibility. We awake feeling invincible and ready to take on the adventure of life. But, many do not see that woven within the beauty that surrounds us are dangers unseeable to the eye. Dangers that could cause great harm to someone with CF. Dangers that to most people might cause a pesky cold or irritating virus but for someone with CF could cause weeks in the hospital, months of extra treatments, endless antibiotics and their side effects, and irreparable lung damage.

The door handle touched by an unwashed hand, an uncovered cough, or a forceful sneeze can all pose severe risks to someone with CF. A person with CF's immune systems is highly compromised and their lungs are a perfect environment for dangerous bacteria to thrive. It is easy to dismiss the dangers of a cold, cough, or unwashed hands because we cannot directly see the effects of their microscopic deadly presence. But they are there.

 

People with CF spend countless hours a day doing treatments and taking fistfuls of medications to stay as healthy as possible. They dedicate themselves to hours of fighting CF for a chance at another tomorrow. You can help in that fight. Please wash your hands, cover that cough by coughing into an elbow or shoulder, and staying home when sick. It truly could save a life. 

 

To learn more about germs and CF read this personal blog post from Breathe Bravely: Sharing Is Caring.

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 : The Doctor Is In

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.

 

Since it is the last day of May and thus the final day of Cystic Fibrosis Awareness month we'd like to share another special REAL 65 with all of you. These are the very special words from someone who has been on the frontline of witnessing advancements in cystic fibrosis. He was Breathe Bravely founder, Ashley's, CF pediatric pulmonary doctor growing up and continues to impact so many lives as a CF pediatric pulmonary specialist. Read his great insight into the incredible advancements of the Cystic Fibrosis Foundation and his experiences through the years as a CF specialist. 

 

"Recently, someone asked me if I’d ever expected to see the progress that has been made in the treatment of CF when I started here years ago. It was the kind of question that made me step back and consider.

What had been my expectations when I moved here 24 years ago? And, as I thought about it, I realized that while I had expected some advances to be made in the treatment of CF, I thought, in a simplistic way, it would likely be in the development of better antibiotics or enzymes or nebulized medications. I don’t believe that back in the 1990's I would have ever conceived that not just one, but two drugs, Kalydeco and Orkambi, would be available for the treatment of some patients with CF.

Nor would I have ever dreamed that there are several more drugs being studied and developed that will work even better than these two drugs and will be available to treat more of those who have CF.

So I guess the answer to her question is no, I would have never dreamed of the advances that have occurred over the last 24 years in the CF world.

And there are two factors that allow me to answer this question in this way and that also allows us to look toward newer, better drugs becoming available for more and more people with CF.

One of these factors is the vision of the CF Foundation in partnering with many labs and drug companies to develop these drugs.

But the most important factor, the thing that makes it possible for the CF Foundation to be able to fund this research, are all the people with CF and those that love and support them. It is because of the devotion and dedication of all who raise funds through bake sales, golf tournaments, wine and beer tasting events and various other fund-raisers including walking in a Great Strides event. And that is because it is only through every baked good sold, every golf ball driven or putted, every item sold or auctioned, and every step taken at a CF walk that the dollars are raised that are necessary to fund the research that leads to these advances.

So, now I can’t wait to see what happens in the next few years…"

 

- About today's contributor - 

James Wallace MD serves as the director of the South Dakota Cystic Fibrosis Center located in Sioux Falls, SD while serving as pediatric pulmonary specialist. 

 

 

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 : The Unseen Side of CF

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

 

Years ago, the effects of CF would manifest themselves visible to the outside world, but in today’s world there are very few telling effects of the destructive disease. CF is considered an invisible disease. Even in the end stages of the disease, CF might only make itself apparent through the need of being tethered to a constant supply of supplemental oxygen and IV polls. But without those accessories we would seamlessly blend into any crowd.

It may be one of the most difficult things about living a life with CF. Even thanks to small pre-portioned antibiotic boluses, we can carry on seemingly normal lives. CF manifests itself beneath the surface of our skin and blindly away from the eyes of the mainstream world. It makes it difficult for others to see the destruction and seriousness happening within our bodies. Thanks to social media and some passionate people willing to open their honest lives living with CF to the world, the invisible side of this disease is being exposed and shared - something that takes great bravery and strength. It also invites loved ones into the unseen side of CF and allows ourselves to freely share who we are.
 

What we see on the outside never tells the entire story of who we really are - for any of us, whether CF is a part of that equation or not. The greatest gift we can give each other is the gift of empathy, and that comes from investing and sharing who we really are with one another. We may not be able to truly understand someone’s life or what they’re going through, but we can embody what those emotions and experiences feel like. We are all connected by the feelings and power of pain, heartache, joy, and happiness.

Here’s to opening the world to the invisible side of CF and bravely sharing our voice. What do you see when you see CF? We'd love to hear from you.
 


Interested in learning more about the invisible side of CF?
Follow us on Facebook and Instagram.

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