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Started By
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Big Day for us (Family related and kinda long)
Posted on 9/7/16 at 7:17 pm
Posted on 9/7/16 at 7:17 pm
Well 15 years ago we found out our last daughter of 3 had cystic fibrosis and the disease had advanced to damage her lungs at the age of 3 months. We were devastated. The long term outlook was pretty grim. The average life expectancy was 35 35 years. Our case was not normal though. We fought the disease pretty hard the first year and then caught a break. Things went pretty well outside of meds and treatments. No hospitalizations until she hit 12. Then we started sinus infections due to CF. 3 sinus clean outs (outpatient)Last August we were told a drug we had been waiting on became available. After 1 year on the drug her sinus issues have stopped. Her lung function went from 72% of normal to 101%. (It has stayed that way for 9 months now) Our CF doctor told us today. "You have normal lung function, no health issues and nothing I can tell you"
Folks I know the game last Saturday was hard to swallow. We were all there. But today.... I am a happy happy man. Thank God for science, people who give to worthy causes and God answering prayers.....
No pics of said daughter will be shared....LOL
Folks I know the game last Saturday was hard to swallow. We were all there. But today.... I am a happy happy man. Thank God for science, people who give to worthy causes and God answering prayers.....
No pics of said daughter will be shared....LOL
Posted on 9/7/16 at 7:21 pm to ShermanTxTiger
quote:tempted to make a joke about your daughter and swallowing,, but frick that
Folks I know the game last Saturday was hard to swallow.
THIS IS GREAT NEWS
Posted on 9/7/16 at 7:22 pm to ShermanTxTiger
quote:
today.... I am a happy happy man. Thank God for science, people who give to worthy causes and God answering prayers.....
Great story! and
Posted on 9/7/16 at 7:22 pm to ShermanTxTiger
That's great news. Enjoy.
Posted on 9/7/16 at 7:23 pm to ShermanTxTiger
quote:
No pics of said daughter will be shared....LOL
Pics of mother will suffice.
Posted on 9/7/16 at 7:23 pm to ShermanTxTiger
Thats good to hear man..
Posted on 9/7/16 at 7:23 pm to ShermanTxTiger
Great news
How are things progressing for CF? Are there updated life expectancies? I remember when Frankie from Real World died from it at 25 years old 10 years ago, so I'm curious where it stands now.
How are things progressing for CF? Are there updated life expectancies? I remember when Frankie from Real World died from it at 25 years old 10 years ago, so I'm curious where it stands now.
This post was edited on 9/7/16 at 7:24 pm
Posted on 9/7/16 at 7:24 pm to ShermanTxTiger
quote:
ShermanTxTiger
Very happy for you and your family and your daughter.
Posted on 9/7/16 at 7:26 pm to ShermanTxTiger
Enjoy every second with her! That's an awesome story!
Posted on 9/7/16 at 7:26 pm to ShermanTxTiger
Way to go and happy for your family
Posted on 9/7/16 at 7:36 pm to Teddy Ruxpin
quote:
How are things progressing for CF? Are there updated life expectancies? I remember when Frankie from Real World died from it at 25 years old 10 years ago, so I'm curious where it stands now.
It was 35 when she was diagnosed. I haven't followed it since. The key is to stop the progression of the disease. It destroys the lungs, pancreas and any mucus dependent body part. If you stop the disease progression the person can "in theory" live as long as most people.
I just checked and the life expectancy moved up to 40. Thanks for asking.
Posted on 9/7/16 at 7:37 pm to ShermanTxTiger
Awesome news. Definitely puts things in perspective. Here's to many more years of good health for your little lady.
Posted on 9/7/16 at 7:37 pm to ShermanTxTiger
quote:
Thank God for science, people who give to worthy causes and God answering prayers.....
Absolutely. God receives the glory for this, and congratulations to you and your family.
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