im new talk to me!

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survivinwithCF
New Member


Date Joined Jan 2007
Total Posts : 4
   Posted 1/18/2007 7:11 PM (GMT -7)   
hello my name is Rachel, im 15 ill be 16 in June, i live in Maine. I was diagnosed with CF when i was 4, i have been hospitalized 5 times i actually just got done my home IV thearopy thuesday, im a sophomore in High School im a pretty good student i like to have fun and particapate in activities. Not alot of people no about my disease but most of my friends do my best friends are really supportive i still have a hard time when people ask me about my cough but i do a good job kinda just sayin oh its nothing really. (if you no what i mean) but im up for any conversation and question. Im new to this so the more people who reply to this the better that will be for me. I have more questions i would like to ask to others who go through all the same treatments as me with the vest and neb and all the medication, like I said im willing to talk to anyone and ask and answer any questions.. thank you! :-)

MarkR
New Member


Date Joined Sep 2004
Total Posts : 12
   Posted 2/16/2007 12:43 AM (GMT -7)   
Hi Rachel.

I'm Mark, welcome. I know how you feel, always being asked if you are alright or if I'm a smoker.
But believe me it does get better. I was on all the same treatments before I got my Transplant.
It takes up allot of time in the day doesn't it. If you have any questions don't be affraid to ask.

Awol
New Member


Date Joined Feb 2007
Total Posts : 14
   Posted 2/16/2007 2:59 PM (GMT -7)   
HI Rachel! I am new here too. Its nice to see that there are so many others that understand how you feel, eh? High school is hard, I know. I'm 27, it's been a looooong time since I've been there but I can still relate. I have become a master at suppressing a cough in social settings but when you really have to cough there's nothing you can do to stop it :). You'll find that even though most people don't know what CF is they really don't care. Most people are so absorbed with themselves that even if they ask why you cough all the time and you tell them - they won't remember what it is you have, they'll just remember that you have something... so you don't really have to worry about being judged or looked at funny or pitied too much.

I've always been relatively healthy, only having been hospitalized a handful of times. Now that I'm in my late 20's I do breathing treatments several times a day but I cannot stand the vest... it irritates my skin really bad, of course, I have had the same vest for about 10 years and I've heard they are different... so.... I dunno what's it's like now but I do not like it. I know a lot about CF though so if you have any questions about anything just ask me, I love to talk about it. I don't know anyone in my life who has it so I'm excited to be talking to others, it's encouraging to hear about all of the people in their 40's!!

I hope I hear from you!
Angie (AWOL - A Wolberd :)

caretaker
New Member


Date Joined Apr 2007
Total Posts : 9
   Posted 7/10/2007 5:21 PM (GMT -7)   
redface   i my name is Yvonne and I know what u r going throw. i was in my mothers whom when thew knew i had CF. it is some thing u just have 2 deal with I know it sucks I deal with my CF with humor i have been in the hospital over 500.times but the life u lead can be good or bad u just have to make the best out of it  scool  when some one asks if u r ok if u r redface  but just make a joke   it makes every one forgit.  

griz94
New Member


Date Joined Aug 2007
Total Posts : 1
   Posted 8/30/2007 5:55 PM (GMT -7)   
Hi Rachel! I'm Kim, I am 13 years old. I've been diagnosed with CF since I was born. I got started on enzymes when I was either 1 or 2. I have a little brother who will be 10 in December. His name is Zane, he has CF also. When I read your post about the vest and nebulizer I thought you probably do the same treatments as me. What do you think of your treatments? I really don't like doing them. What kind of activities do you do? I use to be in softball. I also like horseback riding,swimming,biking and ice skating. I play the trumpet in band. I have another sickness inside of me. It's called Psuedmonas. You've probably heard of it. If your wondering were I live I live in Montana. Our school here has already started. Has your school started yet? Here where I live there are not alot of people to talk to about CF. It is cool to have somebody to talk to here on the internet, especially because people are from all over the country. I hope we can keep talking. See ya! tongue

mbrace99
New Member


Date Joined Sep 2007
Total Posts : 5
   Posted 9/10/2007 6:36 PM (GMT -7)   

HI Rachel,

My sons name is Jay. He was diagnosed when he was 2. How is your CF doing?

Did you know there were different levels of the disease. For instance, my son has a g-tube which he gets food through because he is never hungry, he has a central port that his IV's go through (do you have either of those?), he has a bad cough, on 4 neb treatments, vest and the many enzymes. What about you?

Jay is in the hospital alot, say this year he has been in 3 times already and is getting ready to go in again.

He has 2 friends with CF (lucky him), the boy is barely sick he has the enzymes and that is it no respiratory problems. His name is Bryce, he has a sister named Haley. She has sinus, respiratory, and the digestive problems. She is worse than Bryce and my son Jay is worse than either of them.

If you have any questions that I can help you with let me know. I will do what I can to share with you. Or maybe you could share information of yourself with me.

Thanks.


diddles
Regular Member


Date Joined Mar 2007
Total Posts : 35
   Posted 10/17/2007 1:02 AM (GMT -7)   
Hi, Rachel!  my name's Deirdre (deer-druh), and I'm nineteen.  I was only diagnosed with CF about two and a half years ago.  I'm doing the vest and nebulizer treatments.  I'm only on pulmozyme right now (the TOBI  is month on, month off for me, and it's my month off :D).  I wanted to ask what part of Maine you're from, if you don't mind me asking.  I go there every summer to visit family.  My granmother's in Bangor, an uncle of mine lives with his family in Orland, and I usually go for vacation in Owls Head.  I LOVE Maine, and hope to live there when I get older.  I'm in California right now, which is great, but my soul is in Maine.  Anyway, hope to hear from you soon.  You can also email me at: dd_is_me41888@yahoo.com 

VMN162802
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 12/29/2008 9:01 AM (GMT -7)   
Hey, Rachel!!! My name is Vickie and I'm 33. No I probably don't act it but hey why should I? Well I was diagnosed 6 years ago and I use to smoke!! That took a real bad toll on how this progressed but I didn't know what was wrong. I know exactly what you mean about the meds., the home IV, (I'm on them now) the nebulizer and everything else. The only thing I can't use is the vest. It was causing bleeding for me. I have taken a BAD downward fall since I was diagnosed. At first I was staying pretty healthy but in the last year and a half I've been in the hospital 4 times and now my lung capasity is only 19% and I'm on o2 24 hours a day 7 days a week. Kind of sucks!! So I'm awating a double lung transplant. I'm pretty excited and so are my two boys. Yeah, TWO boys Michael who is 13 and Nathan who is 10. I need to get better and on my feet for them. Please feel free to write to me!! I could use people that know what I go through. They all say they feel for me but have NO clue how each day is. Hope to hear from you!! Take care the best you can.
I am 33 years old and was just diagnosed 6 years ago. The doctors never knew what was wrong. I only weighed 78 pounds and was barely able to get off the couch. After i was diagnosed I became very depressed and turned to drinking. I am now sober, 10 months and feel much better. I'm now awaiting my double lung transplant and am very excited, yet nerveous! My two children are happy their mom will be able to play again. They are the reason for me doing all this. I'd love to meet some new people in the same boat I'm in and make new friends. Please feel free to write me anytime!!!
 
Vic

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