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Posted 3/10/2006 7:45 PM (GMT 0)
My name is melissa and i am 18...i was diagnosed with CF when i was 2 and i have been dealing with my disease fairly well...but the problem is si that i don't have anyone who truelyunderstands what i am going through...when in the hospital i don't get the chance to talk to other CF patients because we are to b kept separated from each other...so if there is someone out there who has CF also and would like to chat i would love it

 

 

thanx

missy tongue

Posted 3/11/2006 7:09 PM (GMT 0)

hi Melissa, I am 19 and I was diegnosed when I was only a few months old, I have been in the hospital a lot my entire life and I can remember a time when we were allowed to hang out together. I had friends with CF in the hospital all the time, and we would hang out in eachothers rooms, play games even do out treatments together, I sometimes had a great time in the hospital. the we couldn't go into eachoters rooms, a few years after that we had to wear masks to leave our own room, and now most of us are in isolation and can't leaver the room at all. I still know my old friends and I talk to them on the phone or email, but it makes being in the hospital very hard now. I am actually in the hospital right now, and in isolation, a very good friend of mine is is insolation in the room next door and we havn't even seen eachothers faces! I compleetly understand the resions we arn't alowed to be together, it could be very bad. comming here and talking to people on line just isn't the same. if you ever need to talk I will always be here. you can email me at [email protected].

take care, and I hope you can find the suport that you need

Jenna 

Posted 3/12/2006 1:09 AM (GMT 0)
hi Jenna

i was so excited when i had seen that sonebody had answered my message.

when i was young i was also allowed to talk with other CF patients but that was a while ago...now we can't even hang in the same room...so Jenna where u live..i live in ontario and i go to the childrens hospital in London..but im worried because my next appointment is when i m going to go through thetransaction to an adult clinic and im kinda affraid because i have had the same doctors and nurses for like ever...was it harrd for u to go through that as well.I live on my own but living with CF can make life hard sometimes...especially when i get sick..do u everfeel like walkingg up the stairs is like running a marathon?.so how many pills u have to take with meals?I take about 10.how long have u been in the hospital?I hope that u get better and that yur not in there 4 long ...usually when im in the hospital i stay there 4 about 2 weekes.

I hope to talk you again

get better Jenna

melissa tongue

Posted 3/23/2006 6:43 AM (GMT 0)
Hi Melissa! I just joined this forum a few minutes ago, and your post was one of the first I read. I love talking to other people with CF because, like you said, non-CFers just don't understand sometimes. I'm a girl (although my name might be misleading!) and I'll be 20 (ahhh!) in about a month. Please feel free to write me back on here, but I might not be too quick to respond since I'm super-new to this! You can e-mail me at [email protected] if you would like. I hope to hear from you, whether it's on here or in an e-mail! Take care!

<3drew
Posted 3/24/2006 6:34 AM (GMT 0)
hey mellissa, I live in Colorado, I am out of the hospital now, only a week this time, it is usually 2 weeks, but I am doing IVs and 4 treatmetns a day at home so I can get back to school. I would love to chat more with you, you can email me at [email protected]. hope to hear from you soon
Posted 4/9/2006 4:34 AM (GMT 0)
 Hang in there missy. My parents were told in 1966 told I wouldn't live to see my first birthday . I 'll turn 40 on april 15th.
Posted 4/9/2006 3:30 PM (GMT 0)
Happy Birthday Early Ricky! Hope your day goes well.
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