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…
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
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
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).
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 affects multiple parts of the body but is mostly known as a lung disease and/or problems with pancreatic/stomach.
With CF comes a lot of medicine and by a lot of medicine I mean drawers, cabinets and storage bins full. Here are a few pictures of my medicine collection.
May is Cystic Fibrosis Awareness month. I will be sharing things about CF that you may or may not know throughout the month. I will start with this little tid bit to make you come back for more. I started IVs at home yesterday, what a way to celebrate CF awareness month huh. I had to access my port so that I could get started. Here is a pic of what the process entails. Continue reading
CF Happens 