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- Thread starter joe
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You should call either your primary physician or your cf doc. Talk to them over the phone and tell them what's going on. They will guide you on what to do next. Don't let it go too far. Try your best to stay away from sick people and wash your hands A LOT! My daughter is not going back to school until the flu season is over. Take care, Merry Christmas!
<img src="i/expressions/face-icon-small-smile.gif" border="0"> Hi my name is Robbie Cooper and i am doing a project for school on CF. I was just wondering if someone could leave me some info on what life is like with CF, and what it is like to have a family member who has CF. It would help alot, thanx.
Robbie,My name is Kay. I would be glad to answer any of your questions regarding siblings with cf. My sister and brother both have it. I am in the middle of them and did not get it. Weird huh? Anyway email address is isomsail@msn.com. Make sure you put something about cf in the subject or I am liable to delete it or my husband might. Kay29w/o cfsister and brother w/cf
Hi Robbie. I'm almost 20 and I have CF. My name is Emily, and you can contact me anytime you like. I'm always willing to answer questions about anything, I don't mind. My email is AbsintheShivers@yahoo.com... and my SN on AIM is AbsintheShivers. Same as the email. Gimme a yell sometime.
Hey allIm 16, with CF, and neither of my two younger sisters have it. I have a very mild case however, but its still enough to give me psedmonis (sp?) and shiz.What im curious about, however, is what the current age expectancy of someone with CF is. Nobody seems to be able to give me a straight answer. - James
Hi James,I am 30 with CF...the reason you are not getting a straight answer to your question...is honestly.....there is not one. Everyones case of CF varies so much..that someone cannot put an life expectancy on each person. The stats say though...that if a person were born today with CF...the average life expectancy is 32. Having a mild case is good...but as I said everyone is different. I know several who are way past the age of 32. I am doing very well also with mine. I honestly believe that there are so many new things for CF people that one can live a long and normal life. Pseudomonas is very common in CF...it is the most common bacteria. That average age means that half the people with CF are above the age of 32...and half are below it. So...from my perspective...dont think about what the age expectancy is.....live life to the fullest!Take CareDea
hi joei am 14 to and i have cystic fibrosis. I was diagnosed november 22, 2002 my b-day and i have been getting sick of and on luckily i have a mild case. anyway i u usually wait till i am positive but that is probally not the thing your doctor would recomend or anyone so yeah
To James,I am 25 years old. There are many quotes and research about life expectancy, but honestly James, if you take care of yourself and do what you are suppose to I think we could live long normal lives. I wasn't diagnosed until I was 18. I don't ever think about life expectancy. I try to keep positive and remind myself that I am just like anyone else out there! So my idea of life expectancy. Until I get old!
Hi there everyone. First off I would like to send my thoughts and prayers out to everyone diagnosed with/ has loved ones with CF. I have watched the recent Real World and have never heard of CF before but honestly after hearing Frankie's description, and even after that other girl said thay her mom's brother died of it , i didn't think it was THAT serious, just maybe that he was a rare case of CF and it got severe. I was born with asthma and as many know asthma CAN be fatal, but like I, there are several people who living with it without too much trouble. Thats how I percieved the situation might have been similar to after watching the Real World. After seeing the show I was interested in learning more about it but hadn't gotten the chance. However, this afternoon (Thurs. 15), i was watching one of my favorite shows, "A Wedding Story" and saw a couple on there who was my age and thought wow, thats so great that they found each other's soul mate already but they are so young. I could personally never see myself getting married right now but It didnt bother me, I was happily surprised to have them show that love has no age. 
Anyway, they went on with the show and then the bride mentioned that she has CF, and then the camera pans down to her and her mom sorting out all of these pills and organizing them in those plastic containers that label Mon.-Sun. (i'm sure u guys know what i'm talking about. I apologize for not being able to give a great explanation). Then they also showed the groom explaining how he helps her prepare her med's (the one he was talking about in specific was a combination of liquids) he said he had to mix them together and he then poured them into this clear plastic looking mouth piece. After seeing all these med's she had to take daily, my heart dropped. I didnt realize how severe it can be especially since this girl looked perfectly healthy to anyone who didnt know and then it may me think back to Frankie. Back to "A wedding story", the wedding was goregous and she seemed glowing with happiness, i just couldnt stop smiling because she just seemed so happy. Well at the end of the show the screen went black and it had "In memory of..(her name) 1982-2002." I was so sad and shocked at the same time. I wanted to cry but was so overwhelmed with emotions of sadness and confusion that I thought I really have to learn more about this now. Although its now been several hours since i saw the show, it is the sole reason i am here now researching about it. I don't blame Frankie for downplaying the reality of the disease, I can understand it totally. I mean yes she volunteered herself for the show but she did just move into a strange area to her with 7 strangers. Maybe it's just me but I dont like sharing several things about myself with people i just met eventhough i know i'd be living with them, i'd like to take a lil' time into telling them (maybe a week or so). Just so i have a chance to get to know them first and especially on your first night there, with all of the adrenaline rush of being there and everything i'd feel that sharing that side of me wouldn't be the best time. Maybe some of you are upset, or wondering how i can say this when i have no idea what's like to live with it daily but you're right. I don't know and as mentioned that is why I am here, i want to learn more about it and who else to learn from other than from those first hand. The reason why i feel that i wouldnt share that info. right away is that about a month ago i was diagnosed with Cervical Cancer. I am a 20 yr. old college student living 3 hours away from home to go to school so when i first found out, my roommates were those i came "home" to. I had to think about everything in my head myself before thinking about if/when i'd tell my parents (b/c at that point nothing was definite yet) and so i spoke to one of my friends about it ,who also happen to be one of my roommates. She was supportive but i now wish i hadnt mentioned it to her at the time b/c everything is now different between us. I think maybe Frankie wanted to inform her roommates so they were aware in case of anything, but that it was "no big deal" so they didn't worry and/or didnt treat her differently and got to know her for the real person she is instead of for having CF. I hope this novel of an entry makes some sense as to where i'm coming from. Luckily, my health is currently fine but i can somewhat relate to that situation. So with Frankie, I'd say to give it some time and i'm sure she'll come around more with it. Real World is a reality show but MTV likes to educate young people on anything and everything so I'm sure they will go into it further in some way, down the road. ~Now it's time to rest your eyes after reading my new "book" If you would like to contact me , my email address is Sweetybeat@aol.com and just write something about CF in the subject. Thanks. Take care all and God Bless, Gina -20 yr old w/o CF (open minded and very willing to learn)
Anyway, they went on with the show and then the bride mentioned that she has CF, and then the camera pans down to her and her mom sorting out all of these pills and organizing them in those plastic containers that label Mon.-Sun. (i'm sure u guys know what i'm talking about. I apologize for not being able to give a great explanation). Then they also showed the groom explaining how he helps her prepare her med's (the one he was talking about in specific was a combination of liquids) he said he had to mix them together and he then poured them into this clear plastic looking mouth piece. After seeing all these med's she had to take daily, my heart dropped. I didnt realize how severe it can be especially since this girl looked perfectly healthy to anyone who didnt know and then it may me think back to Frankie. Back to "A wedding story", the wedding was goregous and she seemed glowing with happiness, i just couldnt stop smiling because she just seemed so happy. Well at the end of the show the screen went black and it had "In memory of..(her name) 1982-2002." I was so sad and shocked at the same time. I wanted to cry but was so overwhelmed with emotions of sadness and confusion that I thought I really have to learn more about this now. Although its now been several hours since i saw the show, it is the sole reason i am here now researching about it. I don't blame Frankie for downplaying the reality of the disease, I can understand it totally. I mean yes she volunteered herself for the show but she did just move into a strange area to her with 7 strangers. Maybe it's just me but I dont like sharing several things about myself with people i just met eventhough i know i'd be living with them, i'd like to take a lil' time into telling them (maybe a week or so). Just so i have a chance to get to know them first and especially on your first night there, with all of the adrenaline rush of being there and everything i'd feel that sharing that side of me wouldn't be the best time. Maybe some of you are upset, or wondering how i can say this when i have no idea what's like to live with it daily but you're right. I don't know and as mentioned that is why I am here, i want to learn more about it and who else to learn from other than from those first hand. The reason why i feel that i wouldnt share that info. right away is that about a month ago i was diagnosed with Cervical Cancer. I am a 20 yr. old college student living 3 hours away from home to go to school so when i first found out, my roommates were those i came "home" to. I had to think about everything in my head myself before thinking about if/when i'd tell my parents (b/c at that point nothing was definite yet) and so i spoke to one of my friends about it ,who also happen to be one of my roommates. She was supportive but i now wish i hadnt mentioned it to her at the time b/c everything is now different between us. I think maybe Frankie wanted to inform her roommates so they were aware in case of anything, but that it was "no big deal" so they didn't worry and/or didnt treat her differently and got to know her for the real person she is instead of for having CF. I hope this novel of an entry makes some sense as to where i'm coming from. Luckily, my health is currently fine but i can somewhat relate to that situation. So with Frankie, I'd say to give it some time and i'm sure she'll come around more with it. Real World is a reality show but MTV likes to educate young people on anything and everything so I'm sure they will go into it further in some way, down the road. ~Now it's time to rest your eyes after reading my new "book" If you would like to contact me , my email address is Sweetybeat@aol.com and just write something about CF in the subject. Thanks. Take care all and God Bless, Gina -20 yr old w/o CF (open minded and very willing to learn)Hi im 13/f/uk and i have cf im called natalie plz some one talk to me please a gal or boy i dont care email me on <a target=new class=ftalternatingbarlinklarge href="mailto:CocaColaNatalie3@netscape.net">Click here to email me</a> or IM me on CocaColaNatalie3 (< thats my screen name) plzzzzzzzzzzz do so!love ya's allx x x <img src="i/expressions/rose.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-tongue.gif" border="0">
My son was diagnosed w/ CF and he is 17. He has always played Varsity football, and Varsity wrestling. Until this year and we knew something was wrong. He didnt even make Jr. varsity, and he 's been lacking in energy. Last Friday we we told about CF for the first time. WE KNOW NOTHING!This is his senior year. We had high hopes for athletic scholarships.Now we don't know about his future. Deborado@iowatelecom.net<img src="i/expressions/face-icon-small-confused.gif" border="0">
James, Hi, my name is Allison. My mother passed away with CF about 6 years ago. I understand it is hard to deel with. I dont know where you live but I would recamend a doctor in Philadelphia PA. If it wernt for him my mom would have passed away much earlier in her life. My mom's case was small at firest also and he was the one who found out she had CF. For more infor you can e-mail me at allison_crisman@yahoo.com I am 16 years old! Good Luck Love, Allison
Hey, my name is Candace and I am doing a project on Cystic Fibrosis. After reading a book about a little girl with CF I have become very interested in the disease I was wondering if the lady who found out her 17 year old son had cf would be interested in answering a few questions for me on what its like to be affected by the CF. I need to conduct an interview as part of the assingment and it was surprising to me when i read you were visiting a CF dr. in Ames because I live just a few miles away from Ames. I was trying to look for a wide variety of people to interview and since you have just recently found out about your sons CF I figgured that would be a good thing to interview you about. If your intersested in answering a few questions by e-mail please just reply, or my e-mail address is crazycandyland@hotmail.com Thank you very much, and best wishesCandace