@Derp said in Health and Wealth and GrownUp Stuff:
@eye8urcake said in Health and Wealth and GrownUp Stuff:
The baby (Isla) has 2 bad genes, so cystic fibrosis. They told my daughter and her husband, at their very first newborn 'well-baby' appointment that their child wouldn't live past 40 so that was fun.
It seems incredibly weird that they would say this. As someone who has been in a long-term relationship with a CFer that still has basically full lung function and almost no organ issues, along with his various family members that have it, and the people in the CF wing that have it in the rare event he gets a sniffle and they want to pump him full of kidney-killing drugs for two weeks -- this seems inaccurate. Especially if it's Delta F508, which it's statistically likely to be, since they have some kickass new drugs for that.
That seems like a doom and gloom prognostication since I know plenty of CFers over 40 and doing decent.
Right? Also, it wasn't until today, four days later, when they went in to do the sweat test that they even explained to them that the main aggravating factor for inducing the damage is getting sick, and gave them all this information, literature, people to call, etc. to help lay the groundwork for her not getting sick, for her eating right before her pancreas has problems, and other things.
I'm going to blame it on that first appointment being the old doctor, and this appointment being in the CF center of the hospital with the people who, like... actually know their shit. I just got off the phone with her and they sound SO MUCH LESS DOOMED, it's unreal.
It also helps that my daughter, who has a condition called D-MER, has really been struggling with breastfeeding and has felt really attacked by the old doctor and nurses regarding her issues with it, but today's appointment had Isla at proper weight maintenance with eating 2.5 times as much as they expected. They really gave her a pat on the back for the effort, and now the baby's on enzymes and vitamins that are supposed to help with that even more.
As with everything, some good, some bad but I'm going to go ahead and share your post with her so she can see what you've said about how life might be for her. Thank you, @Derp.