My name is deb, My son is 17. Newly diagnosed w/CFI have SOO many questios! Where do I start?We had the CF diagnoses last week. Next week we see a CF dr.Heath doesnt know how to tell his friends or even if he should. He's always been active in sports. Over the last year he has been more tired, out of breath, slower at running. He has always had asthma. He has nasal polyps. Very sick as a baby but we thought he kinda grew out of that stage of constant pnumonia, fevers, ear infections. Now this. How do you all manage?Is depression a big problem? How do you manage treatments, can you go to P.E. classes?Please someone shine some light. The crocidile tears have been cried out, now is time for learning, fighting the disease. Deb
would luv to talk to teens!
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MouseyMerlin
New member
Dear Deb,I know how it can be with this disease.. and yes.. there are alot of hard times.. but plz.. feel free to email me.. Im a 17yr old Female with CF.. and was diagnosed early.. my address is margret_huldrunard@hotmail.comBe strong..
Hey Deb.I know this is hard. I have CF, and im 12. I am also allergic to dairy. This is very hard. Especialy for your son. don't push him. he can take gym, but to a limit. Tell the school nurse and all his teachers. encourage him to tell his friends, because u can't hide something like this. I already tried. If u have anymore questions, email me at Firewrestler03@aol.com.
Hi DebI know just how you are feeling right now, but once things settle down you will come to realize that things aren't quite as bad as you are thinking they are right now. My son was diagnosed when he was 3 months old and is now 26. Up until he was in his late teens he hardly went into hospital and very rarely got sick. My best piece of advice to you is not to "wrap him in cotton wool" although at his age that would be a little hard to do. I tended to overprotect my son when he was small and believe me, I did myself or my son, no favours whatsoever. I am presuming you are from the UK, I left the UK 30 years ago (ouch I'm dating myself here) and moved to Toronto, what part are you from?Feel free to email me at mcbrash1@rogers.com.Matt's website: www.angelfire.com/2exist/
sweetgrl2luv
New member
Deb if you would like to talk just email me at Sweetgrl_2luv@yahoo.com. i am 20 yrs old and my diagnosed when i was only a couple of months old......it was very hard for me to tell new people i met.. but tell you the truth when i was little my mom whould actually tell my friends. cause i was scared if i told tehm they would be scared of catching it.. i also was really scared to tell my boyfriend when i first started to go out with him.. An you know what after i told him he was very understanding...An also asked alot of questions.. if i was your son i differently would tell his friends they will be a little not scared but more less confused and worried but he will feel so much better and more and likely have so much support.. Please dont be shy to email me you or your son...
FIGHTCF
New member
THE CYSTIC FIBROSIS PEN PAL CLUB AND SUPPORT GROUP WILL BE HOLDING A CF KIDS CHAT THIS COMMING SATERDAY FEB 7 AT 12 NOON I INVITE EVERYONE TO COME OUR GOAL IS TOO FILL THE ROOM WE ARE GOING TO BE TALKING ABOUT CF IN SCHOOL AND OTHER ISSUES THERE WILL BE ADULTS THERE TO MONTOR AND GIVE SUPPORT PLEASE JOIN US HERE IS THE LINK YOU MUST BE MEMBER TO COME SO HERE IS THE LINK http://health.groups.yahoo.com/group/cysticfibrosispenpalclub/ HOPE TO SEE YOU ALL THERE ON SATERDAY DAVID this is a good place to come and talk to other teena
Deb, Not to sound like a pity party or anything but that's really great that he wasn't diagnosed until he was 17. I know you'd probably not like him to be diagnosed at all. But, it seems that those hit hardest are those that have problems right off the bat and he's had 17 years of normal life. Don't look at me as an example I've been fighting the norm since I was diagnosed at 6yrs. Anyway, my advice is that he should tell his friends when he feels right, my friends found out the hard way, after I moved to a new state, I got put into the hospital about 2 weeks after starting school. Not fun, and it definitely scared everybody. I've had experience with everything you've talked/asked about. I'm turning 18 in about a month, and I've had numerous hospitilzations, medications, IV's, Sinus surgeries, I've had pretty much everything imaginable, including a double lung transplant almost a year ago, less than 2 weeks after my 17th birthday. As for the depression question, everybody has it in some way shape or form eventually with this disease, it's something to watch out for if it gets really serious. The thing is don't let everything the doctors say to get to your head, it is serious and scary, but you're not going to lose your normal life completely, it will come back eventually. I know it's important to listen to the Drs. concerning medicines and treatments. Don't let it get to the point that CF is all that is in your life, because it is not the only thing. If you don't have a life outside of Cf you don't have a life at all. How to manage the disease, the only way you can, by pulling through it. It's not really a simple explanation, but the most apropriate one. It's not easy to shine some light on a subject like this... at least not without very direct and focused questions. Because everybody has an opinion. Anyway I'm dragging on and getting philosophical. Everybody loves that.... Anyway, if you have any questions your welcome to send me an email. ImmortalGoddezz@hotmail.com~Candice17/w CF in Texas
Deb, I was diagnosed with CF at age 4. When I was first born no one knew anything was wrong. I soon caught phumonia twice. As I have gotten older and am now 15 turning 16 in April I realize many things about what I have. I realize that there are worse things out there that I could have. If people ask whats wrong or if I feel close enough to someone I let them know that I have CF, and inform them that I can not give it to them in any way. And if they can't accept me for who I am after that, than they never really were my friends. I wont lie I've lost friends over this in the past but you also realize the ones that will be there for life. CF makes you mature much quicker than everyone else. Think about people that are in worse conditions and you will realize like I have to live life to the fullest and enjoy everything you have. Feel free to e-mail me at Okiegirl01@aol.com. I would love to stay in touch with other CF patients. Please put as a subject Cystic Fibrosis. Thanks, a CF chick living long and strong ~GOOD LUCK~
I'm a 20 year old female with CF. Diagnosed before I was 6 months old. Depression happens, not much you can do to prevent it. I see a therapist, and am on medication (though that's not for everyone). As far as sports go, I've always had trouble, so I've never much been into them (except I go to the gym every day when I'm away at school, because it's my physical therapy, gets me to clear out my lungs). As far as telling people, there's no reason to be ashamed of it. I was a poster child for something like 6 years when I was younger. Everyone who knows me at all knows I have it, and knows basic info on it. The people that know me well (i.e. close friends and my boyfriend) know as much about it as I can tell them. It makes more sense to me to tell people, because more people get educated, more people know, the more CF will get out there, into the light, so to speak. The more CF is known about, the better off we all may be. I can always be reached to talk to for you or your son, I'm very open. And, sometimes talking to people in the same situation can help, especially people of the same general age, so if your son ever wants to have a CF chitchat, I am available. Email is AbsintheSorrow@yahoo.com And my IM is the same minus the yahoo. It's AbsintheSorrow. Hope I've helped. -Emily
Dear Deb, All the syptoms you described your son having are very common for CF kids. As long as he does all his treatments and takes all his meds he should be fine. But that all depends on how survire his CF is. It seems as though your son and me have a similar CF case. If this is so it's noy so hard to live with CF as iyt seems. The hard part is remembering your meds. Oh, he can still attend P.E. Its actually good for CF patients. lol. Write me back if you need at Sillijilly89@yahoo.com - Jillian, 14
my younger brother who has just turned 15 was diagnosed as a baby. my parents both had loads of questions aswell, but as they knew no one with the same predicament, this was very hard. the one thing they could count on though is the support of family and friends. if Heath has worries about his friends reactions, he shouldn't have. he has nothing to be ashamed of. he should not worry about sports either; my brother plays rugby for his school, and as you may well know, rugby is exceedingly violent at times, but his philosophy is that you should live life to the full. you should encourage Heath to carry on with all of the things he enjoyed, as they will keep his mind off things. after a while, the shock, worries and fears will go. it is, very unfortunately, apart of his life now. as i say, you have nothing to be ashmed of, and your friends will find out sooner or later when you take your pills etc, so let them know. i hope what i have said to you is of help, and the best of luck for the future, FRED, 17, WILTSHIRE,ENGLAND
Deb~I myself am a 17 f w/ CF and if your son needs anyone to talk to he can e-mail me at LiLmadz6@msn.com. Hang in there, im not going to lie to you, there will be some tough times ahead of u and especially for ur son but not matter what happens u gotta get through it and stay strong!Maddy 17 f w/ cf
Deb;I am a 15 year old male and i was diagnosed at 2 months. I have been very sick at times but i have always been an active kid also. I play all kinds of sports PE is my favorite class and i run track and cross country. Last year i ran a 5:21 minute mile at the end of 8th grade. I think that it is really up to Heath if he wants to tell his friends, i tell some, my best friend matt, also a runner, my neighbor Nick who practically lives at my house and some others who just see me taking pills at lunch, none of them changed there opinion about me. Even with CF life can still be very normal. Stay Strong always.Jonathan - Seattle, WA
I'm 17yrs old, w/CF and i'm currently a senior in High School. I get short of breath a lot and i'm a really lazy kid. i use to play basketball & soccer but i really can't anymore. I play tennis, vollyball, ping pong and such in P.E. class. I manage. But in school, after going up like 4 flights of stairs it makes me short of breath.I had pnumeonia once in 5th grade i think it was, never had ear infections and i only get fevers when i catch a cold. Oh i had the flu this winter and i was out of school for 7 days. Lets just say i don't ever wanna go though the flu again. The Flu + CF = BAD. I lost my appetite for about a week and i lost 15lbs. But i'm 95% better.As i'm typing this i have a chest pain, wtf, CF sux.Hey any of you guys/girls got that Vest for treatments ? its fuggin great.