Cystic Fibrosis: Our Journey

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I honestly did not know where to start with this blog post. It is such a sensitive subject, that I really have to focus on my words, so that I do not… scare myself.
Cystic Fibrosis. Why am I talking about Cystic Fibrosis? I never thought I would ever have to, hell, I did not ever think I would have to worry about the disease. Here is a little back story.
A few weeks after coming home from delivering my daughter, I was giving her a bath and received the worst phone call in my life. Suffering from Post-Partum Depression, I was in utter panic for one, I was home alone and with my daughter. For two, I had no idea what the doctor was describing to me! The doctor explained that my daughter’s counts were higher than average, and I needed to take her to Saint Louis Children’s Hospital to have a sweat test done. The test would determine if she had, or was a carrier of, Cystic Fibrosis. Without having prior knowledge, I was shocked. I was scared. I was.. Speechless, as I am today.
About a week later, we traveled to Saint Louis. I have never been to the Children’s Hospital, let alone that region. I was directed to the correct office and we sat.. and sat.. for maybe an hour or so, as it was busy. I got called back with my daughter to a small room, probably the size of a small waiting room. The lady told me I needed to hold my daughter’s arms down tight to keep her from moving, and she was going to rub a chemical on her arms, wrap them in a gauze, then wrap them in a metal bar. She then sends a wave through the metal wraps to make my daughter sweat. After about twenty minutes, she took a sample of her sweat and was to send it off.
We decided to go to the Saint Louis Zoo afterwards, as she said I will get the results within a couple of hours. We had to go back to the office once we heard the news, to finish up paperwork if her results came back that she had Cystic Fibrosis. As we were entering the zoo, she called and gave me the news. My daughter’s counts were extremely high , but was only a carrier of Cystic Fibrosis.
So what is Cystic Fibrosis?
According to the Cystic Fibrosis Foundation, “Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.
In people with CF, mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene cause the CFTR protein to become dysfunctional. When the protein is not working correctly, it’s unable to help move chloride — a component of salt — to the cell surface. Without the chloride to attract water to the cell surface, the mucus in various organs becomes thick and sticky. In the lungs, the mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure, and other complications. For this reason, minimizing contact with germs is a top concern for people with CF.”
Some symptoms of Cystic Fibrosis are:

  1. Very salty-tasting skin
  2. Continual coughing, with occasional mucus phlegm
  3. Lung infections including bronchitis and pneumonia
  4. Poor weight gain or growth
  5. Greasy, bulky stools
  6. Shortness of breath, or wheezing
  7. Infertility in males

It absolutely saddens me how this disease is developing, but I have seen multiple stories of some strong troopers! I recently discovered a company called “Sixty Five Apparel.” They sell clothing and accessories to raise awareness for this disease.
You may be asking why it is called Sixty Five Apparel. As their website states: “When I was a child I had difficulty pronouncing cystic fibrosis as most children would. So the doctors told me to say I have “Sixty Five Roses” instead. The “Sixty five roses” story dates back to 1965 when a young boy misunderstood cystic fibrosis for sixty five roses. Still sticking around today sixty five roses is often used by young children to pronounce their disease.”
Reaching out to the company directly, I learned alot. It may be a terrible, life threatening disease; but they have so much hope and aspirations. With that, they are a true inspiration.
If you would like to support Cystic Fibrosis and Sixty Five Apparel, please visit https://sixtyfiveapparel.com/. We have partnered up and they have a promo code for 10% off! How awesome, right? Just type in “Momhood65” into your cart.
To find out more information on Cystic Fibrosis, please visit https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/. You can learn a lot of information about Cystic Fibrosis, and even donate to the Foundation!
To my beautiful daughter, I am in this fight with you. It scares me daily to think this disease could have effected you.
To all suffering with Cystic Fibrosis, you are all in my prayers and you are such an inspiration! Most of the stories I have seen, the young adults are so full of life and not doubtful, as they are living their lives fully.
Thank you.
Heather

4 thoughts on “Cystic Fibrosis: Our Journey”

  1. Oh Wow! My niece had CF. No one else in the family has so far, so we are assuming we are carriers. We meaning the niece’s dad’s siblings. No other siblings had children with it so they may be carriers. My mother was chairman for CF here years ago. We raised a lot of money for it. I have a blanket that I ordered from them with roses around the edge and in the middle it says Sixty Five Roses. Thank you for sharing. I am glad your daughter does not have CF. I will pray for your family.

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  2. Hi Heather. I’m Taylor’s mom. I want to thank you for helping bring awareness to cystic fibrosis and for the shout out for sixty five apparel.
    I remember all too clearly the day I found out that he had CF. Before that day, I never knew of anyone that had it. I started putting our story on my Instagram page “saltysmomma” but it was very emotional . One day I will complete it. The great news is Taylor is doing amazing and his lung function is better than it’s been in many years! That part I can’t wait to write about. Thanks for being part of the story!

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    1. Thank you for your kind words. It makes me so… humble to know that there is such a huge support system. I pray for continual growth of Taylor’s lungs, and hope for a cure. Hang in there momma, you are one strong woman.

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