My name is Kristine, I am a wife to Tom Hendricks, mother to Nik, Ashley, Tommy and Tyler. We live in Saint Louis Missouri. I started this blog after Tyler was diagnosed with Cystic Fibrosis. Not only do I hope to keep our family and friends up to date, but also for me to have a place to go with my thoughts. I have found others that understand what I'm going through, that have been there already or are facing it all as I am.
Tyler's mutations are deltaF508-621+1g>T
Creon - 1 and 1/2 capsules with every feeding CPT- twice daily 15 minutes per session
_Cystic Fibrosis *CF* is one of the most common genetic diseases, especially in Caucasian populations, & affects about 30,000 people in the United States. An individual must inherit two defective genes (one from each parent) to have CF. The defective genes cause the body to produce abnormally thick and sticky mucus that clogs the lungs, and causes difficulty breathing from mucus accumulation in airways. It can be detected by faulty digestion and deficiency of pancreatic enzyes, which keep the pancreas from breaking down and absorbing foods.
-Without treatment, Cf results in death for 95% of affected children before age 5.
-The median age for people with CF is about 36 years, but the number increases each year thanks to new medicines.
-About 1,000 new cases of CF are diagnosed each year.
-More than 95% of men with CF are sterile.
-CF occurs in aprox. one of every 3,500 live births.
-One in 400 white couples are at risk for having children with CF
-Each time two carriers conceive, there is a 25% chance that theit child will have CF, a 50% chance the child will be a carrier of the CF gene; and a 25% chance that the child will be a non carrier.
-More than 10 million Americans are unknowing, symptomless carriers of the defective gene.
-The mucus build up can block the bile duct in the liver, eventually causing permanent liver damage.
-CF appears usually in early childhood where diagnosis is most important. Today, mother's can be tested while they are pregnant to see if their child will have CF.
-There are more than 1,000 different mutations of the CF gene.
-A sweat chloride test is the standard diagnostic test for CF. A higher amount of salt found in the sweat indicates CF.
-To help with digestion, many CF patients take enzymes with their meals to help the pancreas break down the food.
I am tylers big sister, Ashley im 13 (almost 14). At first finding out that tyler had cf wasn't that big of a deal because i really didnt undersatnd everything like what it was and what it did but when my mom explained everything i started to understand a little bit more. I really understood how serious it was one night when tyler stopped breathing. When the ambulance came and fire trucks and police it was the scariest thing thats ever happened to me EVER i was in tears. I was sleeping when everything started i woke up by the sound of my mom screaming my brothers name (nik) i ran out and my brother handed the phone to her because he had called the police she ran down stairs, nik and i followed her. She was explaining everything to the police when i saw tyler and i finally got what was going on. My mom layed tyler on the floor because the person on the phone told her to and she started c.p.r. I couldnt believe how fast the ambulance came with the fire truck and police officers they all came in and they layed tyler on the couch and hooked him up to something. I was just standing there staring i couldnt believe what was happening. Then they said my mom and tom and tyler had to go to the hospital, after they left i went to bed or at least tried. I woke up like every 20 minutes because i kept having the most horrible dreams and i couldnt stop worrying about Tyler. That was no doubt the absolute scariest night of my life. I totally and completley understand how serious cf is and how important it is to keep him well. But i dont think anyone understands more than my mom. Tyler is her first priority and she takes the smallest things that happen with tyler very seriously. She gets so excited when tyler does the smallest things like suck his thumb or try to fit both hands in his mouth which is sooo adorable, we all are living life to the fullest with tyler.