doing a project

[heidinicole85]

Hello,My name is Heidi, I'm a 20 year old female from New Jersey.  I'm doing a project for school and I'm gathering up some information about other CF people, kinda like a survey.  I'm trying to get some information so i can sum up what most CFer's go thru.  I know that I have to take many meds. I usually get hospitalized at least once a year and i'm out of work/school for at least a month when I get hospitalized.  My PFT's are normally in the mid to upper 90's.  I have developed liver problems because of the CF.  I don't need any transplants yet, but I will eventually need a new liver.  I was diagnosed at  about 6 months of age, but they knew that something was wrong when I was born.  I have a port now.  I'v seen many friends die from CF and that scares me sometimes, but then I also know people who are adults and living normal lives and are doing great.  I don't really need to take any supplements now, but I had to in the past.  I'm the only one in my whole family that has CF.  I hate that we have to be segregated from other CF people, I cheat on that a little bit and hang out with some of my friends that are negative for pseudomonas cepatia and that aren't mutli-resistant.  I was a lot sicker when I was younger, but as I'v gotten older I have kinda grown out of the CF.  If you would like to talk to me about any of this stuff and more to help me out with my project for school I would appreciate it.  You can email me at <A href="mailto:heidinicole85@hotmail.com">heidinicole85@hotmail.com</A> or IM me using AIM with the screen name ariesgrl0327 or on MSN messenger with heidinicole85.  Hope to talk to some of you.

 

[melissamcmichael]

Hi Heidi:
My name is Missy and my son Clay has CF. I read what you wrote and I am glad to hear that you are doing well. We live in Louisville, Kentucky and I Co-Chair the Great Strides Event at the Louisville Zoo. Hopefully we will raise a lot of money and soon we will have a cure. I would like to help you a little with your project. Clay is eight years old. He was diagnosed at birth and he is our first child. We went thru fertility treatments to get Clay so he was a very wanted child. He was born two months premature but he had no lung problems. He had all the digestive problems. He was born with a meconium ilius and they immediately went in and did a major surgery on our precious 5 hour old baby. They came out and told us everything went fine, but it wasn't. Later a doctor came and told us that they had tested Clay for CF because a meconium ilius is associated with that. Our world collapsed on that day. I believe for the next year we walked around numb. Then we decided whether we had Clay one hour, one day, or 80 years we were going to make every minute count. And that we have. Clay gained and he grew. If you saw him with his friends you would never guess that he has CF. He is very fortunate other than being in the hospital at birth he has only been in the hospital one time and that was to remove sinus polyps associated with CF. And with that we had a tragic occurence. Clay was blinded in his left eye from the surgery. All I can say about this is make sure you have a doctor who knows exactly what he is doing and does not think he is God when performing this surgery. You all go through enough without having others add more to your pile. That is all I will say about that for now. Clay also has had the liver problems that you are experiencing. His doctors placed him on Urso. That has keep his liver enzymes down and we have had no problems since. Clay only has to do PT and breathing treatments when he is ill. His doctor feels that because he is so active he does not need this. He plays lots of sports including basketball (probably his favorite), football, and baseball. Clay takes a few meds. Of course, the digestive enzymes, vitamins, Urso,and he does nasal flushings morning and night to help with the polyps. He is such a great young man and I am so lucky that God blessed me with him. I hope that this information helps you some on your report and I hope and pray that you continue to stay healthy. Your friend, Missy McMichael Louisville, KY