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Networking for CF....whose out there are how are you doing????

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Cystic Fibrosis
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Posted 4/27/2008 7:54 PM (GMT -8)

Hi, my name is Cori and my daughter has CF.  She will be 4 soon and we have known about her CF since a week after her birth, which was not good.  Her bowels were blocked in utero and caused them to twist.  She was born by emergency c-section at 30 weeks and spent 75 days in the NICU undergoing 2 major surgeries on her bowels.  Right now she is doing well...mostly healthy.  The pattern seems to be that she does really great from spring through summer and then in the fall and the winter it's one sickness after another.  I was wondering if other CF patients find this as well?  She also has a harder time growing in the winter as she's fighting to be healthy let alone gain and grow.  Does anyone do anything special to prep for winter? or secrets to help stay healthier that have worked for you? I feel like I should be fattening her up like a thanksgiving turkey in preparation for the bad winter months!!

After my daughter we have had 2 other children who are 2 years old and 7 months, both tested negative for CF at birth, and we are now pregnant and due in November.  I have found that people are very opinionated about our choosing to have so many children with the possibility that they could have CF.  We feel that just  because a child may have CF does not mean that they will not live a full and meaningful life.  My other feeling is that I have two children of whom don't have CF but I did not recieve any gaurantee when they were born that they will live to be 80!!!!!

I'm really just looking to get to know some other people out there who live with CF whether you have it yourself or someone close to you does...what's your story...and what are your secrets??  Living with a disease like this I have found that we become very resourseful for finding ways to get things done easier....what tricks do you have that you could share???

Thanks and hope to hear from lots of you soon!!!

Posted 5/15/2008 7:31 PM (GMT -8)

Hello,

 

My name is Mercy and my son was diagnosed with CF when he turned 2.  He is now 5 and a healthy boy.  We lived in Chicago for 3 years and the same thing was happening to my son.  The best thing to do is have a lot of hand sanitiser.  My son started carrying hand sanitiser as soon as he turned 3.  If your child is in preschool, then the likely hood of catching something is great.  Try keeping her away from other sick children, even siblings.  We have spent many days in ICU due to him catching colds from other kids.  

 

He has really adapted to a life style of taking medication and enzymes for every meal.  He also has a vest that helps with the chest therapy.  If you can get your daughter a vest then life will be way easier then doing the therapy yourself.  I have two other sons ages 8 and 4.  When they see their brother using his vest they bug me to let them use it. He also has these milkshakes that have helped him gain weight, he loves them.  Well, I hope I have been a little helpful.  Keep in touch! 

 

 

Posted 5/20/2008 7:03 AM (GMT -8)

caringcfmom

Hello to you and welcome to  HealingWell and the CF Forum. I am Kitt and I am just dropping by to make sure you know we are here and the members in this forum are wise and caring.

Please read through the threads and do post to any that catch your eye.

WE are happy to have you join this group.

Respectfully
Kitt

 

Posted 5/21/2008 6:31 AM (GMT -8)
Hi there Cori, I want to second kitt's welcome too healingwell!

I'm realy sorry it has taken me so long to reply too you. I am in hospital at the moment for a course of IV antibiotics. While there has been an internet connection present for a while now in the hospital, I am the first patient too attempt too use it, so it has taken a week too get hooked up with my laptop, but I've managed it, and got another patient up and running too:)

I am a married 22 year old and have Cystic Fibrosis myself. I don't have any real secrets though other than just try your best.

I get myself overly excited at the good things, so I can remember them when things get tough. When things get tough I remind myself, I have been in before, as have a lot of people before me, and it's not the end of the world.

Just recently, I think that's what keeps me ploughing forward,  knowing that on a rollercoaster you always have too slowely work your way up to a peak, before you can get too the fun easy drop down. CF sometimes makes good things even better and more special.

My health is generally good, I have a high lung function, with an fev1 of 90% (my secret to that is playing the trumpet as a kid)

I go to college, I'm doing a mentoring course aswell as college. CF never holds me back, it's usually the muscle problem I have that does it. I adapted to hopsitals and treatment very young, and is just automatic too me now.

I am currently trying for a baby of my own. Been trying for 5 years now, but only just stepped on the band wagon with the hospital really as too why I'm not preganant yet. I've met a lot of opposition, because even though our child wouldn't have CF, they would be a carrier. But then 1 in 25 people are carriers of the gene anyway.

I can't think of what else too put. I'll respond again later. Hope you and your family are well!

Gem

 

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