Happy Thanksgiving!

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I am thankful that I am actually feeling decent on Thanksgiving!!  2 years ago I had the Nissen Fundoplication surgery 2 days before Thanksgiving and had a very hard recovery, so yes I am very thankful that I was able to eat good food and hang out with good friends.  Next up is feeling good on Christmas and New Years!!!

Until next time…

CF Awareness Month: Liver Disease

CFRLD/CFLD or CF related liver disease is yet another common thing in CF.  Mild liver involvement with  abnormal liver blood tests or fat in the liver is common.  In some patients, the liver problems caused by CF are much more important than the lung disease.  Advanced liver disease in individuals with CF is called CF liver disease (CFLD).  Severe scarring of the liver, called cirrhosis, can occur in CFLD.  Many CF patients with liver involvement do not have any symptoms.  In patients with advanced CFLD, patients may have a large liver and spleen.  Problems with weight gain can occur.  As the scarring in the liver becomes more severe, the pressure in the vein leading to the liver (the portal vein) rises and complications of portal hypertension can occur.  These can include a large spleen, fluid accumulation in the abdomen (ascites) and bleeding from dilated veins (varices) in the esophagus or stomach.  Rarely jaundice and bleeding problems can occur.  Basically because of the thick sticky mucus it makes it hard for all things to flow and work correctly in our bodies.  They can do a abdominal CT scan to see if there is any narrowing of the ducts and other areas affected.  Continue reading

CF Awareness Month: CFRD

CFRD or CF related diabetes is also common in people with CF.  Due to the pancreas not functioning properly, it throws many things off whack, to include blood sugars.  People with CF take a lot of steroids like prednisone to help with inflammation in the lungs.  Steroids throw blood sugars all out of sorts, usually resulting in really high blood glucose numbers.  With the diet needs in people with CF the amount of monitoring of blood sugars is high.  Our bodies pull so much from us to fight infection and just to breathe that we can bottom out and have really low numbers and also go really high in the matter of hours. Continue reading

CF Awareness Month: How the lungs can be affected

The lungs are a delicate thing.  They are sacks of air that keep you alive.  It is an understatement to say that breathing with crappy lungs is hard work.  There are many things besides just the standard crappy CF lungs that can happen in someone with CF.   A short list is the following; muscle/skeletal pain from all the coughing, collapsed lung (pneumothorax), pneumonia, pleurisy and lung bleeds (hemoptysis).

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CF Awareness Month: Airway Clearance

Airway clearance is a big part of life with CF.  There are many different ways to do airway clearance.  Pictured are a few handheld devices.  All of these you either inhaled into to expand your lungs or you breathe into to help vibrate the lungs, which loosens up mucus and makes you cough.  There is also the vest, which, I use.  There are others not pictured or mentioned.  The goal of airway clearance is to loosen up all the mucus in the lungs so that you can cough it out.  It only has one way out and we have to work for it.  I joke that I wish I had a spit release valve, like on a trumpet, so that I could open it and blow it all out.  It is a lot of work coughing out all the junk.  We don’t have control over when we cough.  Well I should say that doesn’t mean that we sure don’t try to control it.  My husband likes to park in the “back 40” in parking lots.  When he pulls in the spot he says, “AIRWAY CLEARANCE!” (in a sweet singing voice)  Exercise is also another great form of airway clearance. 

Some CFers dislike the VEST and prefer the old standard of clapping (PD&C=postural drainage and clapping).  That is where you lay down or sit up (depends on what you prefer) and someone claps with cupped hands on your back and sides to help loosen the stuff up so you can cough it out.  When I was growing up we called it “beating,” heck we still do.  Many times I would hear my mom says, “Shannon, come here I need to beat you.”  I have been known to ask my husband to beat me.  The kids like to joke that “dad beats Shannon and she takes drugs.”  There is also a percussor (pictured below) that does the same thing as clapping through vibration.  It vibrates the lungs to loosen the junk so make it easier to cough out.
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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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