The new triple drug for CF has been approved! You can read the FDA article here. It is supposed to help about 90% of the CF population. It is for my CF mutations (double delta f508). The name of it is Trikafta (elexacaftor/ivacaftor/tezacaftor). I can’t help but to think trifecta when I see the name…haha. Continue reading
Category Archives: CF Awareness
Happy CF awareness to me
I have not been feeling good for about 3 or so week, maybe more. I did the 2 weeks of IVs 2 weeks ago and wasn’t much better but that is probably due to the fact that my pseudomonas is multi drug resistant. We are limited on what will “work” on the stubborn drug resistant bug (pseudomonas) in my lungs. I made the dreaded call after the 4 days of 40mg of prednisone and no improvement. I need something more therefore I had to call with all the I have coming up. I have a busy 5 weeks ahead. Next weekend we are going to the Zac Brown Band Concert, a bucket list item for myself. Then I have a girls trip to the Gulf Shores the next week. Then in 5 weeks we have our good friends wedding weekend. Continue reading
CF Facts
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.
Shannonigans Gear!
It’s order time folks!
Please share this on your facebook, twitter, instagram and other social media so more people can see it and get Shannonigans gear! Shirts will not be printed and sent until the deadline date of May 17th, so be patient. I set the date out a little bit (Sunday May 17th…38 days to order) to give everyone a few paydays in there. Now buy and share it with your friends and family!
http://design.goteez.com/Shannonigans
This is what the shirts will look like. PLEASE share this with your friends and family as well. The more shirts that are sold means a bigger donation to the CF Foundation! I really need this to be a good fundraiser as well as getting Shannonigans and CF awareness out there. Thank you for your support!
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 Happens 