Tag Archives: diagnosis

Happy birthday to me…I’m 43!!

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My 43rd birthday was yesterday. February 1st should be a national holiday by now! Haha

I absolutely love my birthday. I know most women don’t like getting older but I’m not most women. Getting older is a blessing a lot of people take for granted.

Life expectancy numbers have never really worried me. It’s just a number. When I was born the life expectancy was around 12. Now for CF patients that were born between 2017-2021 the life expectancy is 53!!! There are now many more treatments and medications for CF including the revolutionary modulators like Trikafta that works on the cellular level. Research for CF is so important to extend the lives of those with CF. Finding a cure for CF is the ultimate goal. The CF Foundation has more than 70 chapters in the United States. Their slogan is “make CF stand for Cure Found.” You can go to http://www.CFF.org to find a local chapter or to donate to the cause. You can also find a Great Strides walk close to you. You can start a team or be an individual walker. Great Strides is the biggest fundraiser for the CFF.

Thank you for always checking in on me and for all the prayers and positive thoughts. Just remember that growing old is a blessing that isn’t offered to everyone.

Until next time…

CF Awareness Month begins

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May is Cystic Fibrosis Awareness month.  This is the month many CF Foundations do their Great Strides fundraising walks.  I am very aware of CF every day obviously.  Now is the time to educate others.  If you have questions about CF or what I have to do every day feel free to comment on this post and I will answer them. Continue reading →

CF Awareness Month: Signs & symptoms of CF

Here is a list of common signs and symptoms of CF:
  • Very salty-tasting skin (my mom used to kiss my forehead and lick her lips to see if I needed to eat a salty snack to replenish salt)
  • Persistent coughing (coughing is what we do and we do it well)
  • Coughing that produces thick sticky mucus (oh the things that come out of our lungs)
  • Frequent lung infections (frequently diagnosed as pneumonia or bronchitis before CF diagnosis and classified as CF Exacerbation and/or pneumonia after diagnosis)
  • Wheezing or shortness of breath (a lot of people with CF also have asthma like I do…double whammy)
  • Poor growth and slow weight gain, in spite of a good appetite, failure to thrive (what lead to my diagnosis)
  • Frequent greasy, bulky stools or difficulty in bowel movements (oh boy, you don’t even want to know)
  • Small, fleshy growths in the nose, called nasal polyps (there have been people that have been diagnosed because their polyps led to questioning CF because they are so prominent in CF patients) (I have had multiple sinus surgeries which I will talk about on another day)
  • Liver issues, enlarged or scaring or narrowing of the ducts

CF affects multiple parts of the body but is mostly known as a lung disease and/or problems with pancreatic/stomach.

Continue reading →

CF Awareness Month: The history of CF & statistics

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I thought I would share a little history about Cystic Fibrosis so you can see where it all began. Well, I mean that metaphorically.
In 1936: A Swiss pediatrician first named the disease. He referred to it as cystic fibrosis with Bronchiectasis. A scientist from Columbia University first developed a complete profile and description of cystic fibrosis symptoms.

In 1938: Dr. Dorothy Andersen described the characteristic cystic fibrosis of the pancreas, correlating it with the lung and intestinal disease prominent in CF, but this was not yet much help with treatment.
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Chapter 1 – Cystic Fibrosis Facts & My Diagnosis

Posted in The Book by

“Playing the Cards Life has Dealt”

Cystic fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • clogs the lungs and leads to life-threatening lung infections; and
  • Obstructs the pancreas and stops natural enzymes from helping the      body break down and absorb food.

Symptoms of Cystic Fibrosis (source:  http://www.cff.org/AboutCF/)

People with CF can have a variety of symptoms, including:

  • very salty-tasting skin;
  • persistent coughing, at times with phlegm;
  • frequent lung infections;
  • wheezing or shortness of breath;
  • poor growth/weight gain in spite of a good appetite; and
  • frequent greasy, bulky stools or difficulty in bowel movements

Continue reading →