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 have had a very hard week, and by the looks of facebook so have many others. I was actually in the middle of a full blown "why me, why Tyler" break down when I got a call that my mom was not doing well Suffering from Copd, Emphysema she has had hard days, but never that she couldn't get out of bed, or not being aware of what day it was...So Saturday I went over got her out of bed and took her to the hosp. For some reason it was hard, really hard to hold back tears. Hadn't even talked to the doc yet and I was so shook up. Never really just watched her breathe before. How did I not notice before how much she really struggles to breathe. I guess it progressed fairly slowly..kinda snuck up on me. She was the same old mom to me, just toted an oxygen tank with her every where. She never really complained, took her meds, was on oxygen couldn't work any more...But really didn't look like she was struggling until Saturday. Watching her like this has made me realize that she is not going to be around forever...She is not the invincible person I thought she was. My grandmother died from Emphysema when I was younger but I don't remember her fighting to breathe like this. maybe I was too young to really understand. I sat with my mom while they did her breathing treatments, I held the mask over her nose and mouth for her telling her to "just breathe" and when she answered with "I just can't anymore" My world crumbled..She is going to struggle for every last breath...and all I can do is hold her hand...Is this what its going to be like for Tyler? How do people stay so strong...I feel so helpless and useless...