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Name: sally
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Name: Ellie | Date: Feb 17th, 2009 9:53 PM
i'm a 15 year old girl living with CF. i was diagnosed when i was 2. The doctors say i'm only gonna live to be 30. that means my life is half over. i don't let that get me down. actually, just last year when i was 14, i got my 2nd lung transplant. the 1st was when i was born. something was wrong with my lungs, but whatever. i deal. it was scary for my father and older brother (9 yrs older than me) to hear that i had CF. it was scarier for me. i usually try and hide the fact i have this disease, but it's gotten harder and harder to hide. just keep your chin up and look on the bright side. it makes living with CF a whole lot easier 

Name: eeeeee | Date: Mar 2nd, 2009 2:50 PM

Name: rachel | Date: Mar 2nd, 2009 2:51 PM

Name: kirsty | Date: Mar 2nd, 2009 2:54 PM
hi how r u 

Name: Macaela:) | Date: Mar 7th, 2009 4:28 AM
Hey my name is Macaela and i have cf. I'm scared because my doctors say i have to gain a ton of weight and then i think im fat. Any advice? 

Name: leah | Date: Mar 12th, 2009 2:08 AM
hey sally. i'm a 17 year old girl with cf and i want you to know i am healthy and if you take care of your daughter there is no way she'll die at 30. please dont give up faith. there's a reason for everything and your daughter is lucky as this disease will teach her so much. i'm not thankful for it, dont get me wrong, but she'll become a woman of great strength if you pursue a normal life for her. shes no different. this disease is just a test from God. not only her's, but yours as well. she's a miracle. love her. and take care of her. she'll be closer to you than you'd ever imagine if you treat her 'normally'. life is precious. please understand that there is hope and your doctors will do all they can for you. just listen. and take what they say seriously. i'm praying for you. stay strong. 

Name: shirley | Date: Mar 17th, 2009 1:26 AM
hi i my little girl with cf 

Name: shirley | Date: Mar 17th, 2009 1:37 AM
my daughter with cf she was a 2 month old when the doctors told me she had cf at frist it was hard to see her so sick 

Name: amanda | Date: Mar 17th, 2009 9:48 PM
In response to your post Sally, i have Cystic Fibrosis and i am 23 years old. There is NO MAXIMUM life expectancy for your daughter. By saying that, your basically giving your daughter an experation date and thats wrong. Be glad shes her and live everyday to the fullest with her and remember, shes no different then anyone else. 

Name: skokocinski | Date: Apr 13th, 2009 4:15 AM
Hi, My name is Samantha and My daughter has been in and out of hospitals with pneumonia for the last 12 months. She has had 6 documented cases of pneumonia and viral meningitis. Her doctor now wants to undergo cystic fibrosis testing. I am scared out of my mind. My insurance just canceled on me and are now giving me a hard time. My daughter will be 3 in a few weeks. Is it common for the CF to not be detected for this long? She looks so healthy, you would never know anything was wrong...even when she has pneumonia. She's on nebulizer treatements every 4 hours and anti-biotics. if anyone has advice or any input at all...let me know...feel free to email [email protected] 

Name: Lauren Meredith | Date: Apr 19th, 2009 3:41 AM
hey ive honestly never really met another person with cf im 14years old and the only one with it in the high school,middle school, and under grades with it so if anyone wanna talk message me @ [email protected] (prefers teenagers) can related to meh thats y. lol 

Name: mikaela | Date: Apr 30th, 2009 4:38 PM
i have cf and i would like to know more about it 

Name: shaunagh | Date: May 2nd, 2009 9:35 PM
sally, i know your daughter has cystic fibrosis and it's hard to deal with sometimes, i have it too. But you can't think of her life as being a maximum of 24 years left. Life span is unfortunately restricted with cf but nobody knows how long each individual cf sufferer will live. Have faith, treatments and health care are improving. Cystic fibrosis is an ongoing battle that someday will surrender to us... meanwhile we just have to do our best with the cards we are dealt with. 

Name: Stressed mom | Date: May 8th, 2009 5:48 PM
I was wondering if an experienced mom could offer some advice to me on the Cystic Fibrosis matter. My son is supposed to take this sweat test to see if he has Cystic Fibrosis. I am scared about the tests and shocks?

He only has two symptoms and they are nasal polyps and very foul smelling stools that are offensive and has chronic constipation signs.... I think they are jumping the gun but now I have to live with what if?

Any advice is appreciated. 

Name: Chris | Date: May 19th, 2009 7:46 PM
I was diagnosed at about 6 months of age. My parents were told that I had 10 years to live max. In sept I will turn 40! Dont believe the prognosis that the doctors give. A positive mental attitude goes a very long way towards quality of life. 

Name: shell | Date: Jun 9th, 2009 8:57 PM
hi my son is 2 and was diagnosed with cf at 6 weeks old he spent 14months in hospital from birth had 22 operations on his bowels and intestines a common problem in cf babies we were told 3 times he would not live and today he started playschool so never give up hope and dont underestimate the strength and courage of these amazing children and dont believe all the doctors tell you the truth is they dont really know themselves stay strong and enjoy your children 

Name: Deborah | Date: Jun 27th, 2009 2:12 PM
I have a son that was diagnosed with CF at the age of 18 months. He is now 14 years old. He puts all of his energy into living as normal of a life as possible. He goes into high school this year and just signed up for the football team. He has played in Lacrosse for the past two years and before that played baseball and took martial arts classes. Having an active life really helps him to stay healthy and keep a positive attitude.
There is so much positive research and development happening through the Cystic Fibrosis Foundation. They've had so many breakthroughs since my son was diagnosed! We have been involved with the Great Strides walk for the past eight years, which is the Foundations primary means of raising funds for R & D...it's a great way to get involved.
There are two particular studies happening right now...VX-770 and VX-809...one is in Phase III and one is in Phase II...both of these medications are gene therapies that help the protein that causes CF to function properly...so while they do not cure the disease, they may facilitate normal protein function and nullify the effects of the disease.
Considering the fact that CF is an orphan disease that the the gene was only isolated like 20 years ago, it is remarkable the breakthroughs that have happened in that time.
Try to keep a positive attitude and stay connected to people that will support you and understand what you and your child live with. Get involved in helping to find treatments and hopefully one day a cure! 

Name: Josh ? | Date: Jun 28th, 2009 4:47 PM
Hi my name is josh , I have cystic fibrosis . It can be hard , but doing your treatment is worth it :) 

Name: Ariel | Date: Jul 1st, 2009 12:56 PM
I am new to the cystic fibrosis community, unfortunatly, and i am trying to find chat rooms and sites that i can speak to others with CF, or parents with kids with Cf, I am kinda computer challanged so i need help. Does anyone have any tips for 

Name: Drew | Date: Jul 16th, 2009 2:15 AM
Hi sally im Drew and im 20 years old. I have cystic fibrosis and am still very healthy. I havent been hospitalized since i was 16 months old. you are so right about trusting ur insticts because the same thing happened with my mom and me. they figured out i had it through a blood test which is apparently the only way. But only because my mom would accept that there was nothing wrong with me. before i was even a year old she had to take me to several different before one of them thought something might be wrong and recomended i get a sweat test. my moms instincts my have saved me. and as for the life expectancy i have a feeling the cure is just around the corner =)
my e mail is [email protected] if u ever wanna message me.

p.s. yes i really like star wars! 

Name: grace | Date: Aug 1st, 2009 12:51 PM
i was diagnosed at birth and i cant remember what they did to me so thankyou for telling everyone what they had to do! 

Name: Francesca Miles | Date: Aug 17th, 2009 12:06 AM
Im 16 with CF, and this is the first time i have spoke out about it. I am the only one in my family with CF, and even though i know i have all the support from my family i feel so alone with it all. I am scared of the future, as i dont know what it will bring. My freinds are really supportive and keep me going. But i find every day just gets harder and harder. Can any1 help me or give me advise? You all seem to be so strong! 

Name: Dave | Date: Sep 3rd, 2009 6:49 AM
Life expectancy is number that to many people take literaly, sometimes I wonder why it is even used. 35 is the number I hear touted about today. To some it gives false hope because they have raised it into the 30's. Well, that is a long time, if a child is 5 they should have better teatments or a cure by the time he/she reaches 30. On the other hand it is like the exit sign at the end of the hallway. Either way there are many variables CF patients have no control over, some good, some bad.
The only thing a parent and patient can control is the patients personal therapys in combination with hospitalizations . These together will give the patient his/her best chance at living a fulfilling life. I am 48, diagnosed at six weeks old with CF. I had a Bi-Lateral Lung transplant two and one half years ago after twelve years on oxygen. Five years is the number given for Post Lung Transplant, I can remember when it was Two years, a lady in my hometown is twenty years post transplant with no rejection ever. I do what the doctors tell me, and inform them of all my activites, that is all I can do. Take each day for what it gives you. It is and was very hard, but don't set the alarm on the life expectancy clock. 

Name: marco | Date: Sep 14th, 2009 12:54 AM
hello every body a have daudther with CF she has almost 4 years she is ok tanks to goD this is new for me ,, this change my life is very hard ,but we need keep woing not get up ,, good luck everey body god bless you..my imail is [email protected] any thing can do i help you ok chao 

Name: Kiig | Date: Oct 7th, 2009 6:07 PM

Name: amanda | Date: Oct 30th, 2009 11:37 PM
Im sorry but i cant believe you would put a life span on your child. Chrish everyday you have. 

Name: robinadh | Date: Nov 22nd, 2009 7:24 PM
I have a 7mth old son with cf. He was diagnosed at 4mths. I am looking for advice about his daily care. Also really scared about all germs out there. Any advice about vaccinations? He also has a twin sister who does not have cf. Any advice on raising them together? Just looking for support & others to talk to. 

Name: megan | Date: Jan 17th, 2010 5:00 AM
hello, i'm 25 and i have CF. i was diagnosed at 6months of age. the doctors said i'd live to be 13, then 16, then 21, now 30. sorry but don't believe a word of that. i just had a baby girl in 2005 who doensn't have CF but is a carrier of the gene. My entire life i have only been hospitalized twice until i became pregnant which i knew when i became pregnant it would take a toll on my body, even since then i've only been in the hospital a total of maybe 4 times in the three years since i got pregnant. my entire life i have lived just as a normal child i was very active in athletics all through school, i had a 100% lung function and no problem keeping weight on i weighed 154 until i became i pregnant,. it has taken me a few years to get my health back to somewhat of a decent health but being active is a big way in keeping your lungs healthy and making it easy to breath. stay away from stress as well, stress doesnt help anyone especially CF patients. and also don't wait til the last minute to go in for a "tune-up" once you start feeling a little down with the breathing call your doctor and get in quickly. the quicker youget the treatments the faster you get better and the less damage it does on your body. don't let the doctors life estimates worry you. live everyday as a normal day. you are here for a reason and only GOD will take you when he is ready for you. Don't try to go sooner then needed. my motto is "i may have CF,but CF does not have me!" i know that it's hard to get up and be active when it's hard to breath but take it slowly and your lungs will build up and you'll be doing things that you never thought possible. i play softball and run around with my daughter all the time. beign active is what has kept me so healthy. 

Name: charlotte | Date: Jan 26th, 2010 11:46 PM
hello my names charlotte i am 15 years old and i have cf i was dignosed with cf when i was 4years old i was really ill as a baby and the doctors did not know wat was wrong with me they done loads of tests on me but they still could not work out what was wrong with me until one day this doctor come in to see me and he said to my mum have charlotte had a sweat test done and my mum said no so they done a sweat test and thats when they found out i had cf it was really hard growin up tryin to get use to the fact the that i would be on medication for the rest of mylife but i just got use to it and i am as happy as can be i mean yes i have my ups and downs but i know that it will be all worth it in the end i know that you cant give up on something thats important because it canget worse thats why u should always look after yourself never take anythink for granted because life is too short 

Name: melissa | Date: Feb 8th, 2010 2:20 AM
Ok so my childs dr tells me on friday that she thinks my son may have cf, and sets him up for a sweat test. he has had asthma since he was 4 months old,why wasn't this thought of before this. He is now 8 my question is should i be concerned at this point. 

Name: Grainne | Date: Feb 20th, 2010 3:33 AM
Hello. im lookin for a chatroom with another Cystic fibrosis user. iv C.f Myslef .. sence Brith. im 15 yrs old liven in Ireland..Write back to me please thanks =D x 

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