Clinic day!

Today was CF clinic day.  I also had to get my labs before my appointment.  All in all it was a good clinic appointment.  My lung functions are up from last time.  My FEV1 was 1.47 / 50% today and last time they were 1.37 / 46%.  At least we are going in the right direction.  I have been hovering around the 1.50 +/- for the last year so we are pretty much calling that my new baseline.  When we first moved to Tennessee July of 2013, I was at 1.72 / 56%. Continue reading

Clinic update

Today was clinic day.  If there is one thing CF clinic has taught me over the years, it’s patience.  I am used to it so it is no big deal but others would flip if they had to sit in the doctors office for 2.5 hours or more.

I haven’t been feeling the greatest as you know since I started oral cipro and prednisone.  I have been on both for 11 days.  I have 2 days of prednisone left and 3 days of cipro left.  Today’s clinic wasn’t the greatest.  First stop was lung functions which were down from last time.  This time my FEV1 was 1.37 / 46%.  Last time I believe they were 1.47.  They aren’t down a ton but they seem to be taking a slow decline.  Gotta love having a progressive disease that you have no control over. Continue reading

My special power…coughing up blood

Today I was sitting at a French Market enjoying a crepe at a table for one when I felt the ever so familiar gurgle in my lungs.  I started coughing and didn’t want to spit it out so I powered through my crepe and rushed out the door to my car.  When I got the car I took out a “spit cup” (aka the little 3 oz Dixie bathroom cups) that I keep in my console just in case.  I was still coughing and finally had a place to spit and sure enough it was blood.  Now when I say I coughed up blood some people would think that means I coughed up a little of red stuff with what I normally cough up.  Others think I am spewing blood out of my mouth.  It’s more somewhere in between but I assure you it is pure red blood.  I feel a gurgle in my lungs and then I involuntarily cough and up it comes.  There is no stopping it.

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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.

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