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
The above movie is coming out in March. It is about two people with CF who fall in love. The meaning behind the name of the movie is a play on what the recommendation is from the CF Foundation about staying 6 feet apart if two CF patients are together. Continue reading
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.
I’m on day 11 with 10 days left of a 21 day IV course. My labs (Amikacin levels, creatinine and BUN) have been great! I have steered clear of ibuprofen and done my best to stay hydrated. With all of that said, I am feeling “better.” I put better in quotes because that is a term I use sparingly. It is hard for me to say I’m “better” because I don’t want to jinx myself. I also want people to understand that “better” in my CF vocabulary is more of a “better than I was” and/or “better for now.” I don’t say that in a woe is me or with a grim tone at all. It is to show the reality of my life with CF. I embrace every “feeling better” day and do everything that I can on those days. Continue reading
I just wanted to give a reminder about the Shannonigans Gear sale coming to an end this Sunday, the 17th! We still need more sales to be able to make a big donation to the CFF. Don’t wait!!! Ok, I guess you can wait until payday/Friday if you need too. hahaha I don’t know when there will be another sale because we have to have enough interest to make the sale worth doing. There are 6 different items to choose from…including youth sizes! Continue reading
It has been a busy few weeks. Heck, it’s been a busy few months.
I was on IVs, then in the hospital for kidney failure then a few weeks of recovery and energy storing for my trip to Florida this past weekend. My sister and I went to Miramar Beach in Destin, FL this weekend. We arrived Friday morning and left Monday evening. We packed in a lot of time on the beach laying in the sand, enjoying the water and soaking up the sun. We also visited some of the “famous” places there like McGuire’s and AJ’s. We even got tattoos! My sister’s says “With Every Breath” and mine says “Every Breath Counts.” They are on our ribs under the bra line. To seal the weekend we went for a helicopter tour to see some sharks and dolphins. It was beyond beautiful! I could have stayed up there all day. Continue reading
I received most of my lab results and they are looking good still. Thursday my creatinine was 0.86 still good. My BUN (blood urea nitrogen…a test to see how well your kidneys are working) was 16. Normal range is 10-20. Monday the 21st my BUN was 15, so it has been behaving. Continue reading
I had labs drawn yesterday to check my creatinine levels again. After 2 sticks and barely enough blood I went home to wait for results. My creatinine was 1.03 yesterday!!! Remember, normal range is .5 – 1.1 so I am barely in there but I’m in there. The 1.03 is a long way from the 5.99 I was in the ER a week ago. My numbers are now in the normal range but I am feeling far from “normal” again. Continue reading
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.