Hi. My name is Jenna. I am a senior in highschool getting ready to graduate. Next year i am going to college in hopes of becoming a nurse. I babysat a little girl who was diognosed with CF about two years ago. The disease really interested me and it soon became the topic of the huge project all seniors are required to complete in order to graduate. I have gone through many books and in a couple months i am participating in a CF fundraiser walk. i am looking for some information on more of the emotional side and what goes on at home. Things like: What it was like finding out your child had Cf, what is a daily routine like, how are your other children affected, what is the hardest thing about the disease. ANYTHING will help. If i am imposing on anyone in anyway, i am truely sorry. Thank you very much. Jenna<img src="i/expressions/face-icon-small-smile.gif" border="0">
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
requesting information
- Thread starter anonymous
- Start date
AbsintheSorrow
New member
I don't have kids, but I have CF myself and have lived with it my whole life (of course, haha). Feel free to email meAbsintheSorrow@yahoo.comOr IM meAbsintheSorrowanytime you like.
knifewieldingmonkey
New member
Hey, i'd like to help u out as well u can email me and even add me and chat on msn @ knifewieldingmonk3y@hotmail.comPaul
Jenna, I am a mother of a 2 year old son who was dx. with CF at his one week check up. Initially when we found out, it was like experiencing an out of body experience. I was in a complete state of shock and denial until he went in for his sweat test the next week. My initial thought when i was told he had CF was "How long is he gonna live?" The first few months of his life were very hard. Not only were my husband and i adjusting to being first time parents, but we were dealt this huge blow that we thought we would never make it through. Those first few months, i admit i focused more on the fact that he had this disease, rather than enjoying him as an individual. That is my biggest regret. Our daily routine is chest pt in the morning, enzymes with meals and snacks, chest pt at night followed by neb treatment. I am thankful he was dx. as young as he was so this routine just became "normal" for us. The hardest part of having a child with CF is not knowing how severe of a case he has and not knowing how long he will live. I try not to think about these things everyday, but it is hard when you do the CPT and give him enzymes NOT to think about things like that. Another hard part was not knowing whether or not to have more children, since there is a 25% chance of our next child having CF. My husband and i, after 2 years, decided to put fate in God's hands. We got pregnant and had a CVS done at 10 wks. to determine if the fetus had CF. Thankfully, we will be having a child in November w/o CF. We decided once we were pregnant that we needed to find out prior to having the child so we would have time to deal with the fact it had CF, if it did. We decided to keep the child regardless, and love it as much as we love our son. I think it is great that your school is doing this project. It will hopefully improve everyone's awareness on CF. Amazingly, 1 in 30 people carry the CF gene. Isn't it funny that more couples aren't having children with CF? Another thing to let you know, i live in WI, which is one of the few states that test for CF at birth. I believe there are only like 11 states in the US that test for CF at birth. It's too bad all 50 states didn't, because it would save parents of children with CF a lot of worry and heartache about not knowing what is wrong with their child. Good luck in your endeavors after high school. Jodi, mom of Tucker w/CF
wow the emotional side of CF????Where to start and what to tell..There's so much that, I don't even myself who has cf.. will ever understand everything.The things that I've gone through maybe u should of saw in a blockbuster moive. Or on ER.. yea.. making cf a hollywood story..But really... I am going through alot of emotions and if u care to ask me about any of them.. I am 18 and graduting from high school this year. and the teenage side of Cf sure can be a confusing and yet, interresting thing. Learning that maybe u will die sooner than others and knowing that a transplant maybe your only hope for surviual.Than finding out.. that transplants aren't a cure. They are a last resort for someone with cf besides death.Transplant and Knowing that they don't last forever is scary but none of us last forever. Yea.. life.. You have to live everday to it's fullest b//c Today is the Tomorrow we worried about yesterday!Thin about that.. .e-mail mecfkitty101@aol.cmif u want know no more on the teenage side of cf and what I am dealing with.. sure is a emotional mess.BYSTEPHANIE
Dear Jeanna, Hi, I am an Aunt to a cure for CF... My neice jordyn 7 was diagnosed with CF when she was 6 months old... We have a walk site in havre de Grace,Md we have just started 2 years ago to raise money for a cure!!! We had a high school do a senior project on CF and run a fundraiser @ there local bowling alley, and it raised $1,000.00 for a cure... I think its great that you are going to raise awareness for a great cause, If you ever need any info or help just IM me @aol- terrortonya or email@tontee4165@hotmail.com<img src="i/expressions/rose.gif" border="0"><img src="i/expressions/face-icon-small-sad.gif" border="0"><img src="i/expressions/face-icon-small-shocked.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">