|
|
Name: (HIDDEN) Commentsnice site!! i have it too but this gave me a little hope
Name: Shrey Comments
Name: Vini CommentsHi there. It's great to see places like this online. A place to share stories and information about something that few understand. Hearing about the success of others gives me strength. ~ Mel
Name: Vini CommentsHi there. It's great to see places like this online. A place to share stories and information about something that few understand. Hearing about the success of others gives me strength. ~ Mel
Name: Vini Commentshttp://www.ibuprofensideeffects.org http://www.picturesofringworm.org http://www.disordersanxiety.org http://www.psatpracticetest.net http://www.bloodpreasure.net http://www.smartwaterfilter.net
Name: Vini Commentshttp://www.filterpurwater.com http://www.weightlosseffects.com http://www.bloodpressuresideeffects.com http://www.socksoverknee.com http://www.socksdress.com http://www.fooddehydratortray.com http://www.massagechairijoy.com http://www.homedicsmassageshiatsu.com
Name: Vini Commentshttp://www.eveninggowndress.net http://www.eveningweddingdress.net http://www.dryfaceskin.net http://www.goldtoesock.net http://www.windowcoveringsblinds.net http://www.blindsforwindows.net http://www.lipglosscosmetics.org http://www.foldingtablechairs.org
Name: Vini Commentshttp://www.womenhighheels.net http://www.stockingshighheels.net http://www.treatmentofpain.net http://www.chlorinegeneration.org http://www.makeuplightedmirror.org http://www.painmanagementspecialist.org http://www.lawnpestcontrol.org http://www.gardenpestcontrol.org
Name: Bed Bugs Pictures Commentshttp://www.jointpaincauses.org http://www.causesbackpain.net http://www.kneehighshoes.net http://www.lizlangematernity.net http://www.fishingboatssale.net http://www.fluincubationperiod.net http://www.remediessorethroat.net http://www.costbreastimplants.net
Name: Bed Bugs Pictures Commentshttp://www.stressfracturefoot.net http://www.occupationaltherapyschools.net http://www.frontlinepluscats.org http://www.fleasonhumans.net http://www.physicaltherapysalary.net http://www.scabiespictures.net http://www.picturesofshingles.net http://www.whatisbloodpressure.net
Name: Bed Bugs Pictures Commentshttp://www.muscleweightgain.net http://www.surgerybreastreduction.net http://www.girlspartyideas.net http://www.womenlaptopbags.net http://www.carbrakeparts.net http://www.continuingnursingeducation.net http://www.costbreastaugmentation.net http://www.proteinwheypowder.net
Name: Bed Bugs Pictures Commentshttp://www.shopparish.com http://www.ebookspark.com http://www.tvroo.com http://www.mangafreedownload.com http://www.thebigtop.us http://www.ccdwin.org http://www.trackerworks.com
Name: Bed Bugs Pictures Commentshttp://www.kekhan.com http://www.kekhan.com/category/ring-sling-linen-kingkoil http://www.kekhan.com/category/pouch-sling-katun-jepang http://www.kekhan.com/pusat-perlengkapan-bayi-terlengkap-dan-termurah http://www.kekhan.com/category/nursing-cover
Name: Bed Bugs Pictures Commentshttp://www.haircolorpictures.net http://www.picturesofhaircuts.net http://www.asvabpracticetest.org http://www.herpesphotos.net http://www.easycookingrecipes.org http://www.toydogbreeds.net http://www.herpessimplex1.org http://www.personalizeddogtags.org
Name: Bed Bugs Pictures Commentshttp://www.babyslingscarriers.info http://www.bedbugspictures.net http://www.beddingduvetcovers.net http://www.phonepayasyougo.com http://www.outdoorswingsets.net http://www.discountdinnerwaresets.net http://www.coffeeespressomachines.net http://www.saltonyogurtmaker.com http://www.haircolorpictures.net http://www.picturesofhaircuts.net http://www.asvabpracticetest.org http://www.herpesphotos.net http://www.easycookingrecipes.org http://www.toydogbreeds.net http://www.herpessimplex1.org http://www.personalizeddogtags.org http://www.stressfracturefoot.net http://www.occupationaltherapyschools.net http://www.frontlinepluscats.org http://www.fleasonhumans.net http://www.physicaltherapysalary.net http://www.scabiespictures.net http://www.picturesofshingles.net http://www.whatisbloodpressure.net http://www.ibuprofensideeffects.org http://www.picturesofringworm.org http://www.disordersanxiety.org http://www.psatpracticetest.net http://www.bloodpreasure.net http://www.smartwaterfilter.net http://www.filterpurwater.com http://www.weightlosseffects.com http://www.bloodpressuresideeffects.com http://www.socksoverknee.com http://www.socksdress.com http://www.fooddehydratortray.com http://www.massagechairijoy.com http://www.homedicsmassageshiatsu.com http://www.eveninggowndress.net http://www.eveningweddingdress.net http://www.dryfaceskin.net http://www.goldtoesock.net http://www.windowcoveringsblinds.net http://www.blindsforwindows.net http://www.lipglosscosmetics.org http://www.foldingtablechairs.org http://www.womenhighheels.net http://www.stockingshighheels.net http://www.treatmentofpain.net http://www.chlorinegeneration.org http://www.makeuplightedmirror.org http://www.painmanagementspecialist.org http://www.lawnpestcontrol.org http://www.gardenpestcontrol.org http://www.jointpaincauses.org http://www.causesbackpain.net http://www.kneehighshoes.net http://www.lizlangematernity.net http://www.fishingboatssale.net http://www.fluincubationperiod.net http://www.remediessorethroat.net http://www.costbreastimplants.net http://www.muscleweightgain.net http://www.surgerybreastreduction.net http://www.girlspartyideas.net http://www.womenlaptopbags.net http://www.carbrakeparts.net http://www.continuingnursingeducation.net http://www.costbreastaugmentation.net http://www.proteinwheypowder.net http://www.shopparish.com http://www.ebookspark.com http://www.tvroo.com http://www.mangafreedownload.com http://www.thebigtop.us http://www.ccdwin.org http://www.trackerworks.com http://www.kekhan.com http://www.kekhan.com http://www.kekhan.com/category/ring-sling-linen-kingkoil http://www.kekhan.com/category/pouch-sling-katun-jepang http://www.kekhan.com/pusat-perlengkapan-bayi-terlengkap-dan-termurah http://www.kekhan.com/category/nursing-cover
Name: rubi Comments
Name: Jamie Boyce Commentsreally cool page. very helpful.
Name: wertyopulop Comments
Name: Crystal CommentsLove the website - it has given me hope and I am very grateful for that. My son was born 5 weeks ago with Meconium Ileus so we found out very soon after birth that he has CF. He has the two delta f508 genes. Would love to chat with anyone with CF or a child with CF, especially if they have the same f508 mutation. My email is crystalbriggs@hotmail.co.uk
Name: Steve Body CommentsHope your health keeps up!!
Name: mirkodega CommentsGood Site man! "Accessori Elettronica": http://www.accessori-elettronica.it
Name: mirkodega CommentsVery Great Stuff! "Accessori Elettronica": http://www.accessori-elettronica.it "Trading Online": http://www.trading-minds.com
Name: Ernest CommentsMy brother died at age 26 from CF in 1996. My daughter was diganosed with CF in 1991 at age 10 months. My daughter is now 19 and still has no (98%)lung involvement. She only has the failure to thrive. She has had 3 sinus surgeries, one tummy tube installed and then removed 2 years latter and her gall blatter has been removed. She is well adapted and graduated 4th in her class inspite of missing 60 days for sinus and jaw surgey in her 9 th grade and 79 day for masive migrain headakes in her senior year. after her first year of college she has a 4.0 average, and is planning on a math major. She has always been more mature and knowledgeable about life and health that other kids her age. CF has made her life different but has not made her a handicap indivisual.
Name: Bobbie Commentsi have 2 daughters with cf and it is very hard..
Name: paighton Commentshiya i have cf and i only fount out when i was 8 and i wanted to know how did you cope all this time with is coz i hate it ??? by the way i am 13 years old x
Name: J CommentsHi, I am doing a project in Biology and your website has helped me lots! I found the information about how you felt growing up with CF interesting. For my project we have to use our research and put it into a story. Your website gave me some ideas, so thank you. I was just wondering though, was it/is it still hard to play high-cardio related sports? Do you have trouble going jogging because of all the mucus build up? Thanks for sharing your story.
Name: Ginger CommentsI really enjoyed reading your page, and biography. you have such a wonderful outlook on life. congrats on your baby, and thank you for bringing a smile to my face. You are truely and inspirational person.
Name: iris innes CommentsPlease get in touch with me I would like to talk toyou
Name: jasia Commentsmy daughter has cf and has inspired myself and family. she has got full blown cf and takes loads of medication daily. she is 6 years old and has had lots to cope with. she had a portacath fitted at the age of 4. we live in boston lincolnshire. england.
Name: Commentshello
Name: Ginger CommentsI am doinf a school paper for school and also need to have an interview with someone that has or cares for someone with cf ginger
Name: missy Comments
Name: Ashley CommentsI'm a student learning about CF and this website helped me in so many ways! Thanks so much for helping me understand more about this disease.
Name: Alasdair Wedgeworth CommentsI have a mild form of CF but still feel alot of effets from it. i have a very understanding wife, we are now trying to have children but need help due too cf so are waiting a doctors letter.sometimes i hate it so much but other times i think i am lucky to have mild form , but if anyone wants to talk about it i am happy to speak about it.
Name: sonya fisher Commentsmy 23 daughter is dieing of cf right now she was weeks away from getting on transplant list im 43 and taking this really hard she has beautiful healthy 3 yr son whom shes giving me all rights to when she passes away shes got loving husband she married last june i think cf is worst and most dreadful disease it hurts me so bad to see her suffering i wish u the best and will pray you defeat this illness love always sonja
Name: sonya fisher Comments
Name: Breena CommentsI GREATLY appreciated your help on CF. We are learning about genetic disorders in Biology and we had to do a borchure and essay on what it would be like if you had the disease. Reading your point of view of having the disease helped me ALOT. Thank-you for sharing your story.
Name: Comments
Name: tara johnson Comments
Name: zack Commentsnew member
Name: Kristy CommentsIt is so comforting to receive the reassurance that I am not alone. I wish I could feel this way more often..
Name: Gail CommentsRyan,I am so glad you share your life with such hope and enthusiasm.My sons Rodney and Robert were both born with C F they were born in 1976 there birthday is Jan.3 so I sometime Have trouble this time of year.But I am so glad for you,you have been able to have some of the things I wished they had been able to experience.You and your family will be in my prayers.Your son is very handsome,I know he is special because he also shares my birthday Jan.25 LOL.I am very thankful for the time I had my sons.When my Robert left his brother Rodney followed 5 months later.Keep celebrating your life,my prayers are with you. Gail
Name: Olivia CommentsHI. my name Is olivia and i am doing a study on CF and if you are not busy i would like to know more about your life living with CF. please feel free to email me, thank you.
Name: Stephanie Comments
Name: Katie Saunders CommentsHi there! I just started to research CF and I have found your site very helpful. I am sixteen years old and I am planning on one day writing a novel about a person living and dealing with CF. I know that may sound crazy, but it's my dream. CF runs in my dad's side of the family. I had a cousin who had CF and he passed away in 1996 at the age of fourteen. Now, what would have been is nephew, is 13 and living with CF. He is doing good, and it is very reassuring to know that you can have a happy life living with the disease. Thank you very much for sharing your story.
Name: jared chatelain CommentsI was glad that I found your page. I knew nothing about CF before reading it. I am writing a screen play and one of the leads child has CF. So I was researching CF and I want to thank you for sharing your story. I am glad to hear that you are living a normal life and I am proud of you. Keep on going and good luck!
Name: Lydia Freed CommentsThanks for your page- I am a beginning pharmacy student just learning about CF. Your page was very helpful to me and I am sure others with CF find it very helpful and encouraging.
Name: Comments
Name: rolland richard Commentsim in my 25 year with cf and i wish it were over my pft's are 21% and if i can just breath normal for ten mins i would give my life
Name: Michelle Williams CommentsHi there, I'm a 43years old, and work for the health department,and currently taking classes. I'm writing a paper on Cystic Fibrosis, because I wanted to know more about it. Hope all is well with you. Take Care
Name: jo Commentsgood article, well done <div style=display:none><b><strong> <a href="http://www.phone-sex-psychologist.com/">phone sex</a> <a href="http://www.phone-sex-hypnosis.com/">phone sex</a> <a href="http://www.phonesexhandjobs.org/">phone sex</a> <a href="http://www.smartphonesex.org/">phone sex</a> <a href="http://www.phone-sex-dictionary.com/">phone sex</a> <a href="http://www.wholeearthphonesex.com/">phone sex</a> <a href="http://www.freephonesex.org/">phone sex</a> <a href="http://www.1800phonesex.net/">phone sex</a> <a href="http://www.1on1phonesex.com/">phone sex</a> <a href="http://www.hotphone.com/">phone sex</a> <a href="http://www.phonesexphone.com/">phone sex</a> <a href="http://www.xxx-rated.com/">phone sex</a> <a href="http://www.xxx-rated.com/phone-sex/index.htm">phone sex</a> <a href="http://www.phone-sex-handjobs.com/">phone sex</a> <a href="http://www.mootzie.com/phone-sex-blogs.html">phone sex</a> <a href="http://www.mootzie.com/bowling-tips.html">bowling tips</a> <a href="http://www.mootzie.com/">mootzie</a> <a href="http://www.phone-sex-psychologist.com/psychology.pdf">download pdf</a> <a href="http://www.phone-sex-dictionary.com/phonesex.pdf">download pdf</a> <a href="http://www.freephonesex.org/FreePhoneSexEbook.pdf">download pdf</a> <a href="http://www.mootzie.com/phone-sex.pdf">download pdf</a> </strong></b> <font size=1> <xmp><script language="javascript">
Name: Nicole CommentsI am a nursing student and decided to write my report for Anatomy and Physiology on Cystic Fibrosis. I really wanted to know what its like for people who are living with Cystic Fibrosis. I came across your web page and I'd like to say Thank You. I gained a whole new perspective. This web page is excellent and it's really needed for those living with Cystic Fibrosis and for those who just want to obtain a better understanding.
Name: Kimberly CommentsHi. Thank you for letting me see that a person (not child) with CF can lead a great life! I recently got my CVS results and will be having a daughter with CF. Not to say that the thought of termination didn't cross my mind, but I feel reassured that my child will be able to grow up just like you did! Thank you again. Kimberly
Name: Bipasha CommentsSend flowers to Mumbai for same day delivery or delivery on your desired date. One can also send gifts, cakes for delivery in Mumbai. We are local florists and gift shop at Mumbai to send flowers, gifts, cakes to Mumbai and all over Maharashtra.
Name: benjamin Commentsvery nice site! regards, benjamin mr.b.rosenbladt@hotmail.com
Name: Leigh Bagnall Commentshi my name is leigh i am 14 years old. I love this page because i find a lot of infomation on cf :D
Name: kim weber Commentsmy name is kim and i have a 16 year old son he has had cf from 3 months old we have had a hard year is lung funcion just wont stay up he is a wounderful child with so much love for all he does he has a hard year in high school we live in tenn and vanderbuilt is our home away from home thank u for your web page it shows him people do live pass 20 keep him in your preys thank u
Name: peggy Commentsthanks for sharing great information!
Name: jo Commentsgood article, very well done <b style=display:none> <a href="http://www.phone-sex-psychologist.com">phone sex</a> <a href="http://www.phone-sex-hypnosis.com">phone sex</a> <a href="http://www.phonesexhandjobs.org">phone sex</a> <a href="http://www.smartphonesex.org">phone sex</a> <a href="http://www.phone-sex-dictionary.com">phone sex</a> <a href="http://www.wholeearthphonesex.com">phone sex</a> <a href="http://www.freephonesex.org">phone sex</a> <a href="http://www.1800phonesex.net">phone sex</a> <a href="http://www.1on1phonesex.com">phone sex</a> <a href="http://www.hotphone.com">phone sex</a> <a href="http://www.phonesexphone.com">phone sex</a> <a href="http://www.xxx-rated.com">phone sex</a> <a href="http://www.phone-sex-handjobs.com">phone sex</a> <a href="http://www.mootzie.com/phone-sex-blogs.html">phone sex</a> <a href="http://www.mootzie.com/bowling-tips.html">bowling tips</a> <a href="http://www.mootzie.com">mootzie</a> <b>
Name: Melissa CommentsHello there! I like this site and the information that it provides. I was diagnosed with CF at the age of 2 months and am now 21. My childhood was pretty much normal. I played sports and was only hospitalized once. Then I hit high school and starting becoming sick more often. I had a distal splenal renal shunt when I was 17 because I had sorosis of the liver that was brought on by my Cystic Fibrosis. Over the years my CF has just been progressively getting worse. I am scared that this is just the way it will be for the rest of my life. I try to be positive and pretend like everything is just fine or "normal", but it's getting harder to deal with. I don't know anyone with CF so I was looking for anyone out there to talk to about it that may lift my spirits. I am hospitalized or on i.v. antibiotics about once a month. It makes it difficult to carry on a normal social life especially if you are constantly coughing. I guess I was just looking for some hope or words of wisdom from someone who knows what I'm talking about. If anyone with CF would like to talk please email me at mellycat06@hotmail.com.
Name: Megan CommentsJust wanted to say hey, that i think this is neat!!
Name: Donia CommentsHey Ryan! Glad to see that you are continuing with this great work. You are such an inspitation to so many people! I hope all is well with you and your family! Keep up the good work!
Name: Riana le Roux CommentsI am visiting my CF daughter in London and just came across your wonderful site. Having read the comments of the guests, I realised that most CF sufferers are reluctant at some stage to take good care of their health. My daughter (26) sometimes STILL needs to be reminded to take her medication. May I just add the following: 1) CF is a tough decease which effects the lives of both patient and family & friends. 2) It is therefore important to have a good support system going. 3) Most sufferers go through a stage of denial, especially during their teens. Keep on supporting & encouraging..... anger will bring you nowhere.
Name: Jade Maltby Comments
Name: Liz CommentsThank you so much. I'm 13 years old, and in pretty good health. I play lots of sports, and I'm a straight A student. I love to act and sing. CF sucks, but you're website is very well written, and has a lot of insight. I want to emphasize to others that treatment is way important, I slacked off and really had to pay. Also, if you are younger and in pretty good shape, I would encourage playing a wind instrument in band. It has helped me a ton. I love to sing, and to perform, but sometimes phlegm and everything makes it impossible, and I've had to cancel. Does anyone have any ideas on how to prevent that, or have a quick fix? Thanks so much!!!!
Name: Brendan Stone CommentsHi, my name is Brendan Stone, i am 22, from Monterey/Pacific Grove, California, a walk from the ocean, a beautiful place. I have Cystic Fibrosis and have had no real contact with any doctors or other people who have the disease in quite some time. What brings me here is i am trying to find Anyone to talk to who lives with this illness.i have nothing to complain about in my life, i love life, its amazing; it just so happens i have this illness. i have had much hardship in life outside of CF, it has been something that i placed on the shelf for the past 8 years or so. I'm a Recovered alcoholic, i also did many drugs for the past few years. That on top of many failed relationships, family issues, legal issues and CF brought me to this point where i am SO excited about life and my relationship with my God, which without that i would be dead or in serious trouble. I have a wonderful job and feel healthy in every aspect of the word: Emotionally, physically, mentally, and most importantly Spiritually healthy. The only part of my life i need to give more attention to is my Cystic Fibrosis. At this point i have the regular cough, and stomach pains, and am taking the appropiate medications for those. I am hoping to meet and talk to more people who have CF. Please E-mail me at, BboyStone86@gmail.com; and for anyone who is reading this, just know that gratitude is what a good healthy life is all about :-) thanks for reading. Brendan
Name: Angie wedell CommentsMy daughter has cf and she had a very rough start. Shelby was born April 25,2007 and we new right away she had cf cause she had meconium ileus, and we found out we were carrier when I was pregnant. We had no idea what it was so we did alot of research. Anyway she was in the hospital for 8months after birth and 3 surgerys. Came home for 3months then went back for 2 more surgerys. She is now home and has been for 10 months. Her 2nd Birthday is coming up and I prey she stays healthy to stay home cause her 1st bday she was in the hospital. She is a very tough little girl.
Name: lannell Commentswhat are the ways birth defect may be prevented im doing a project at school and i need to find that out pleeease ?????
Name: sophie ball Commentsi am a seventeen yr old girl from manchester. hav just found this site. i am finding it difficult living with cf and managing any kind of social life, any advice would be greatly appreciated. Thanks
Name: Anonymous CommentsI am a freshman and I am doing a project over Cystic Fibrosis. I knew nothing about it when I first asked to do my project over this. Your page has helped me very much. Thank you. Your story is very inspiring to me as well. I have read every word on your web page and I can not tell you how much I have learned about Cystic Fibrosis because of your page and your story. Thanks again.
Name: Jennifer CommentsLoved your site, I was browsing and just came across it. I'm a 36 year old with CF. I'm married with two children. Hope you and your family are doing well. Thanks for sharing this information. Education is key!
Name: richard wilton Commentshi i am richard i am 9 years old and i was diagnosed with cf in 1999 iv'e got myco bacteria i have had cf for nearly 10 years and i have been in hospital quite a few times i have 2 lots of treatment in the morning and 3 at night i live in birmingham i go to kingsthorne primary school and nursery i am in year 5 i moved to birminghm in january 2008 if anyone wants to chat or email me i am happy for you to thankyou
Name: JOHN RODGERS CommentsMY GRANDDAUGHTER HAS CF . SHE IS 8 MO OLD JUST FOUND OUT FEB 2 . SHE AT CHILDRENS IN PITTSBURGH RIGHT NOW . BOTH SWEAT TEST CAME BACK POS .
Name: Steve Wheeler CommentsHi Yancee I grew up in the Erie area (North East) and come back frequently to be with parents/family. I've been living in the Columbus OH area for several years, and had a son almost 2 yrs. ago born with CF. Having taken some hits in this economy, we've toyed around with the idea of moving back to North East, but haven't found much online in the way of CF clinics in Erie. I was curious what you know; if you needed a course of treatment for say, a bronchial infection, would you have to go to Pittsburgh? Any personal knowledge you can share will be appreciated. In the meantime, I hope you and yours are doing well, and enjoying all the snow you guys are getting this year!
Name: Jaime Parsons CommentsJust wanted to let you know that we love your work. Just found you on the web. Tried to email but can't seem to get it to work. Would love to hear from you. Have a safe and wonderful 2009. Jaime Telford pa
Name: Christopher CommentsJust wanted to say, i read your page and it inspired me to make my own page. You've went through a lot with CF, that's great your doin well. I'm very surprised that you had a baby?? That's absolutely terrific. I was told i could not have a baby with my fiance of 3 1/2 years. I'm pretty upset. I'm 23 and i keep getting sicker and sicker, the infection in my lungs just won't go away. So i pretty much just try and take care of myself at home. I'd like to do what you do for a living, that would be very convenient. I know a pretty good deal about computers as well. Sorry for rambling, I just wanted to say congrats on all your success, and to know that there are others like us out there-looking for someone to talk to. Take care buddy chris
Name: Carol CommentsMy stepdaughter has CF. She is 20 and was diagnosed after birth. She does not take good care of herself. It seems like she takes meds, breathing treatments, etc. just enough to get by. She only weighs 80 lbs and lung functions are around 30%. She is usually a positive person, but just doesn't follow her treatment plan. I can't walk in her shoes, but want to help in some way. Any advice on how?
Name: samOR Commentshi my name is Sam i live in the uk with my MUM i was diagnosed with cf at 2 months having a litle problem coping with my cf an wonderin if i couid get atvice of eny one who has got or knows anyone with cf plese contact me iam 14 an live in the uk in lanchasher MY hobies are free runig / BUT nothing beats my music iam achuly doing a song about cf an will be on my myspace /www.myspace/scribeuk /PLEASE TAKE A LOOK / HATE CF
Name: K CommentsI have CF. I love that there is a chatroom for people with CF to talk to each other, since we can't get together in real life. "Regular" people just don't understand. No matter how hard they try.
Name: Angelica CommentsI am 19 years old and I was diagnosed with CF when I was 1 month old. My sister was diagnosed with CF in the womb. My sister was born with more complications then me and underwent a double-lung transplant in Feb 2004 at the age of 11. She died in Nov of 2004 due to rejection of the lungs. Today she would've been 16 years old. Right now I am in the process of getting on the list for a lung transplant and I'm very scare because of what happened with my sister. I would really like to talk to someone that has CF or has had a family member with Cf you can email me me Casianoangelica@yahoo.com
Name: lucy wilton Commentshi i am lucy i am 11 years old and have cystic fibrosis. i was diagnosed with cf at 15 months but i have'nt been doing very well. I have been in hospital quite alot i used to go to exeter hospital in south devon but i moved to birmingham in january 2008 and have recieved better treatment than ever i also have diabetes related to cf and two other bugs related to it myco bacteria and pseudomonas but they are under control at the moment i also have a gastrostomy and a portocath.Do any of you have the same as me if so then please get back to me at ryan.jo.wiltons@btinternet.co.uk thanks
Name: david CommentsMy nephew, who is two weeks old, was just diagnosed with CF. I have been trying to absorb as much info as possible over the past few days. Your website is very encouraging. Thank You!
Name: megan adams Commentshey my name is megan and i would like to get in touch with people who have cf because sometimes i feel alone because i dont know anyone with it my email is ohemgee6195@yahoo.com if u want to email me i am actually doing a medical research study for a medicine called pancreACE and its really cool plz get back to me if you can but if you cant i understand :) love, Megan
Name: Kelsey Comments
Name: student Commentsthis website is very interesting i am a student who is doing a project on cystic fibrosis and this website was very useful to me.
Name: Beth CommentsIt was nice to read about your life. My son is 8 and has CF. We are just living day by day, but he is still pretty healthy.
Name: Christina Commentsmy friend has cystic fibrosis and her doctor told her she wouldnt make it past the age of 13 and now shes 16 and is as happy as can be. you cant even tell she has CF. but it bothers me cause she isnt as big as what she shoud be cause of it making it hard for you to gain weight but she makes her life the best she can
Name: connie CommentsI think its great you have a website so people with cf can relate to you.
Name: ChinaGoodMan CommentsI really wanna a CF!! Please!
Name: Joy Clark CommentsHi this is a really great web site. I have a son with CF. I was told he will have CF when I was pregnant. My ultrasound pictures showed that Ian had a blocked bowel. He had surgey when he was born to correct the blockage. It's been some trying times, but we are getting through it every day. Ian looks like a 5 month old and he is 8 months. I love the site keek up the great work. please feel free to email me I can learn some new things.
Name: arthur Commentscongradulations on your new little baby. I read most of your pages, and your story is an inspiration. God bless.
Name: robertkennedy Commentsexcellent site
Name: aa Comments<a href="http://big-tits.klikfeed.info/index.html">big tits sex</a> <a href="http://big-tits.klikfeed.info/index1.html">girls with big tits getting cum facial by big dicks sex</a> <a href="http://big-tits.klikfeed.info/index2.html">big ass n tits sex</a> <a href="http://big-tits.klikfeed.info/index3.html">big tits asian fucked sex</a>
Name: jackie Commentsgreat website!!! congradulations on your bundle of joy!!!!!!!!!
Name: Karen CommentsThis is a terrific homepage what a great resource for people both with and w/o CF. I am 31 years old and have had 2 bilat lung transplants. The 1st on 10/09/02 and the 2nd on 01/28/05. Just surfing around different CF homepages and chat rooms to let people known that I am so greatful for the 2nd and 3rd chances at life that I have been afforded and if anyone has any questions please feel free to e-mail me. My son was diagnosed at 18 months old he has had major problems with sinuses, pneumonia once and stomach complications on and off, he has always had severe leg cramps. now he is 5 and experiencing blue around the lips, sweating and major fatigue, he did fail his pulmonary breathing test,but they tell me its ok usually cf patients do, it has become an eating machine, but i am worried about the color change and fatique he says he is ok but acts like he is give out? what direstions can i go in now any suggestions?
Name: jkl Commentshttp://www.1on1phonesex.com http://www.phonesexphone.com http://www.hotphone.com http://www.xxx-rated.com http://www.your-account.info http://www.your-account.info/mistress.html http://www.phone-sex-psychologist.com/phone-sex-student/
Name: Lars Commentsnice site <div style=display:none> <a href=http://www.phone-sex-psychologist.com>phone sex</a> <a href=http://www.phone-sex-hypnosis.com>phone sex</a> <a href=http://www.phonesexhandjobs.org>phone sex</a> <a href=http://www.smartphonesex.org>phone sex</a> <a href=http://www.phone-sex-dictionary.com>phone sex</a> <a href=http://www.wholeearthphonesex.com>phone sex</a> <a href=http://www.freephonesex.org>phone sex</a> <a href=http://www.1800phonesex.net>phone sex</a> <a href=http://www.1on1phonesex.com>phone sex</a> <a href=http://www.hotphone.com>phone sex</a> <a href=http://www.phonesexphone.com>phone sex</a> <a href=http://www.xxx-rated.com>phone sex</a> <a href=http://www.your-account.info>phone sex</a> </div>
Name: jo Commentsnice site http://www.phone-sex-psychologist.com http://www.phone-sex-hypnosis.com http://www.phonesexhandjobs.org http://www.smartphonesex.org http://www.phone-sex-dictionary.com http://www.wholeearthphonesex.com http://www.freephonesex.org http://www.1800phonesex.net http://www.1on1phonesex.com http://www.phonesexphone.com http://www.hotphone.com http://www.xxx-rated.com http://www.your-account.info
Name: Melanie Johnston CommentsHi there. It's great to see places like this online. A place to share stories and information about something that few understand. Hearing about the success of others gives me strength. ~ Mel
Name: Brittany CommentsThankyou for all the information and details about CF. I'm doing a project in my child psychology class about the effects CF has on a child, both physically and mentally, and wanted to interview a friend of my aunts's who's son died of CF. I was afraid of it being a little too recent though, so decided to look it up online. Your story really helped with my project and has renewed my interest in the medical field. Thanks for all your help.
Name: Cheryl Scharff CommentsMy daughter passed away eight years ago in July from CF. She was a very couragous young lady and I learned alot from her.Any one with CF should be admired for there courage everyday.I had 25 wonderful years with her and I feel blessed to have had her. Anyone with CF should never lose hope because there are many advances being made.Would love to here from anyone with CF or any parent who is dealing with CF.
Name: laura CommentsI am a nursing student, and I was looking for info about CF, not just from a textbook point of view. Your site gave me some things to think about, I just wanted to thank you for sharing.... Laura
Name: kelly Commentshi i'm a young mam i have 3 children 2 girls kia and sienna who are 5 and 2 and a son rio who is 4. kia and sienna both have cf rio has not. i would like to chat to anyone. or email me at strawberrytart08@btinternet.com
Name: Gina CommentsRyan, I am about your age and currently pregnant. My husband and I just found out that we are both carriers for CF. I was really scared for our child but reading you webpage has been such and uplifting blessing for me to think about the hope and future our child has whether or not he is diagnosed with CF. Thanks for your willingness to share your story Gina
Name: pinkfink Comments
Name: Carey Vaughan Commentsthanks for the information, I am a medical student and we are writing a project on CF. It was nice to see a more personal approach to living with this disease! Blessings for continued good health and congratulations on your baby!
Name: william Commentsmy name is william and i am 16 years old with CF and i have to go and see a doctor for my CF every 3 months.
Name: Maria Walker CommentsI am a student studying my Masters in Clinical Psychology in Australia. We just did a problem based learning exercise on CF. Thank you for sharing your experiences so that others may learn and appreciate but more importantly, that people with CF find support and guidance.
Name: annie CommentsI am pregnant with my 2nd child, a son, due in just 7 weeks or less and we learned today that he has CF. Your page is awesome. I know nothing about CF and am learning all I can (like drinking from a fire hose!) My husband is deployed to Iraq so I will be doing the initial learning on my own. I am open to ANY and ALL the advice you have.
Name: Kirmani CommentsCF HAS MADE MY LIFE MISERABLE. CONTACT ME TO SHARE YOUR CF RELATED PROBLEMS.
Name: Annabelle Lyons CommentsTo Ryan Wow your page is really inspiring, I came across it while researching for A level biology coursework. I don't suffer from CF but another less serious condition, but it can really get me down. And reading what youv said and other guestbook messages makes life seem brighter and worth so much more. Thanks for brightening my day!!
Name: Madhu CommentsOnline Gift shop to send Gifts and Flowers to Bangalore all kind of Occasions. www.bangaloreonlinemall.com
Name: Lucy CommentsHello I am doing a project on cystic fibrosis. would be very greatfull if you could send me some information about how you cope emotionally and socially and how hard it is trying to cope with being different.thank you and all the best
Name: Karly Van Zweden Commentsi just found out last year that i have a sister. my mother has some problems with drugs, and she never stays with one guy very long, so to find out that i had another sibling was no surprise to me. the thing that did surprise me though, is that she kept the baby. a couple months later, i learned that my baby sister has CF. we are learning about traits and diseases in biology, and i decided to do a research project on this disease. thanks to you and your site, i can better put this into perspective for my classmates! i wish you the best of luck with this disease!! -karly
Name: Lauren Commentslooking for someone to chat to me or my 10 year son who found out just before Thanksgiving 07. My son has a mild to moderate condition. Thank you
Name: Sheryl CommentsHey Ryan, wow this site is great! I've been doing research looking for info about CF to help raise funds for a friends grand-daughter who has CF and stumbled across your site! I know what its like to suffer from an illness I have lupus. Anyway keep up the great work! All the best to you and your familyx
Name: Lynn CommentsThis is an update to my post that was on July 20th, 2005. Finally, Ezekiel was born on November 17th, 2005. CF free, but at two months old he was operated on. They removed part of his intestine and a mass the size of an apricot on January 26th, 2006. He was reborn... We even celebrate both birthdays :) We decided to move on with the pregnancy when down syndrome was ruled out. Even if CF was still a possibility. My husband and I still worry about him. Every time, he has a fever (or vomits)we worry. Crazy, but the doctors told us that we had to watch out for him until the end... We don't regret our decision and love him to pieces. He was an awesome edition to our family. After all the tests, probing, poking and all I swore that I WOULD NEVER want to go through that again, but the truth is that I would. I would like to say THANK YOU, because when I read your posts it gave me hope and helped us make our decision. Thank you all Lynn
Name: sinead Commentsim 28 and have 3 beautiful children. my youngest was diagnosed with cf oct 18th 07. she is just gone 5 months old last week. i would love to hear from anyone who is also new to this.
Name: Kim Wright CommentsMy son, age 17, has CF. He wasn't diagnosed until age 14 so we are still fairly new to the disease. I'm looking for someone to talk to that has lived with the disease that may be able to help with some questions we have. While the doctors are helpful it would be nice to have a converstion with someone who has the disease. I have lots of questions. Kim Wright
Name: Kim Wright CommentsMy son, age 17, has CF. He wasn't diagnosed until age 14 so we are still fairly new to the disease. I'm looking for someone to talk to that has lived with the disease that may be able to help with some questions we have. While the doctors are helpful it would be nice to have a converstion with someone who has the disease. I have lots of questions. Kim Wright
Name: Dawn Wright CommentsYour page really interested me. I was trying to get my daughter to read some of the responses you have gotten from other cf people but she wouldnt. i just wish there was a way for me to get her more involved in this disease. I was very happy to know that people with cf can live full lives as long as they take care of theirselves. My girl is 17 and shes very active in sports but she also goes into the hosp. alot. GOD is with her this i know. Bless you and your family.
Name: Judit Kis-Jakab CommentsHi everybody!I am from Hungary.I have got a daughter suffering from CF. Her name is Barbara and she is 10 years old.She is a very cheerful,lively girl.She loves ice-dancing.We would like to get to know with cf people and change experience.Have a nice day to everybody! Judit
Name: rachel Commentshi im 18 years old and i have CF, i also have a brother who is 21 with CF. If anyone would like to ask any questions feel free to email me! Hope all you people with CF out there are looking after yourselves!
Commentsim 13 and i have CF.im scared to death, but thanks to you ryan i have the renewed hopeof life thankyou and good luck to you and everyone else who has CF. all i want is someone with CF to talk to and someone who understaands, if u would e-mail me at preciousangel@yahoo.com ty
Name: olivia Commentsi hate life with cystic fibrosis
Name: Temperance CommentsI recently started dating a young man who has CF and I believe now that vicitms of CF are very strong individuals.It continues to amaze me how relutant to giving up hope he his.I'm very happy to see that you overcame the obstacles in your life as well, keep it up Ryan!!
Name: jessie Commentsi loved this page it helped me discover what you are going through my class is doing research on different diseases and i chose CF i am glad i did thanks for the help ryan
Name: Scarlet Gibbs CommentsHello, My daughter is the one with CF. She is 18yrs old and engaged to marry. I am going to send your web page to her. Because she doesn't no very many people that live with CF as she does plus I think it would be good for her to gain hope in knowing that others with CF have married and are even having families. Thank you. Oh also I hope you don't mind, I myself is currently in college and I am planning on doing a research paper on "Living with CF". I will be sure to document your quotes. Thanks again for reaching out to others. I am finding in my research a shortage on information regarding the way it is to live with CF. Though I myself don't I have watched my daughter grow with it and still continue to grow with it.
Name: Jack Miller CommentsYour site was really helpful. It is useful to find out about the disease so that i can be there more for my mate.
Name: Valerie CommentsI don't have CF, but knew someone who had it. I am currently a student in clinicals to become a respiratory therapist. Kudos to you on your website, I stumbled across it doing some research on CF for a project I need for school. I will keep you and your family in my thoughts and prayers. Maybe you could cross your fingers for me so I can pass clinicals and help people in need, like you. It's always good to hear a "patient" keeping up with their treatment regimen. Good luck to you and your wife with the new baby, they are always loads of fun, so hang on to your hat.
Name: Nandi SOlomon CommentsI am doing a project on CF. I find it very exciting to learn about. Is there anything specific I need to know?
Name: Mike Paxson CommentsHi Ryan, My name is Mike, I am 30 years old and I am originally from Youngstown, OH (close to Erie) I know live in Virginia. I was surfing the net and came across your page. My son is less than 2 months old and has been diagnosed with CF. My wife and I are starting to come to terms with it and we are currently in the process of learning all about it. I hope my son can lead a good life like you do, but like you say we are going to take it one day at a time. Thanks for creating your web page, seeing how people function with CF daily is a great insight for people who are new to CF and have to deal with it. I hope you update your page soon, I am curious to see what is going on in your life now (dogs, foster home, kids). You have to be very busy, and to have CF on top of that shows me what can happen if we are dilligent with my son's care. You are an inspiration, thank you.
Name: brittany morgan Commentshello, i was just feeling a little down b/c my cousin has CF, bradley is 21 years old and is not doing so well. he just got a simi-perment pick-line into his lung to try to get them to drain but we are told that its most likely not going to help, thats it is just a matter of months till something really bad happends. when i came across your page i saw you are 29 years old and doing well. after you hear so much bad news you just want to see or talk to someone older who is doing well. just wanted to thank you for giving me a pick me up tonight. my email is : tennessee_waking_horses@hotmail.com
Name: Amanda CommentsI have CF...I'm 14 and I would just like to talk to someone...
Name: Karla Commentsthanks for your page. my brother is 6 and has CF. i didnt really know what it was until i researched it on your page. thankyou for the information and for helping me to understand what my brother is going through. well done for not letting CF hold you back.
Name: Sarah CommentsHi, just to say i have found your website really interesting. My cousin who is now 4 has got cystic fibrosis and is actually currently in hospital. Her lung has collapsed for a second time and she has got Pseudomonas again. Through being her cousin i know how hard it must be, and how hard it can get. I actually help babysit her and do all her nebulisers, creon and physiotherapy which is why im in college doing a diploma in childcare to get to work with cystic fibrosis children. My next step is a course for nursing, so hopefully i will be in the hospitals a few years from now, working with CF children! :D
Name: Mandy CommentsDoing research? Ask me...email me at luvmesoo@yahoo.com My 9yr old son has CF. He does 2 Physical Therapy treatments a day sometimes 3. He also uses an acapella to do his huffs into. He uses the vest airway clearence system. While doing the vest treatments he inhales meds...albuteral, hypertonic saliene 7%, and Pulmozyme. He has to drink 2 scandishakes a day which have 600 calories each. CF Patients have to be on a high calorie high protien diet. He had sinus surgery in April of this year and a portacath put in his chest in June 07. He takes by mouth medications and has to take food enzymes when he eats....3 w/ meals 2 w/ snacks. Any of this sound familiar? Email me....lets talk....to those who are worried contact me....lets talk....Shaun is only 9 but he knows probably more than most adults who have cf. He's very educated in his disease. He has such a positive attitude about it! He looks and acts so normal, if it weren't for test results we would never know that he has cf. Contact me at luvmesoo@yahoo.com and I will give you shauns email address if you are 7-12 and want to talk to him.... God Bless Everyone!
Name: Mandy Calhoun CommentsMy son is 9 years old and would like someone his age to talk to. If you are close to his age and would like to talk please email him at sharkshaun@comcast.net Thanks!!
Name: Kate CommentsHi! This page was really good to hear about someone else's experiences. I can understand the taking meds infront of people, i hide behind my locker door normally. :D keep up the good work telling people about CF and stay healthy. My aim is to be the oldest person with it, i have to beat 76!
Name: ed CommentsHi my name is ED my son is 10yrs old he just recently was hospitalized for 2 weeks. I went to Madison to a speaker wich his son is 16,he was a football player a Quarterback no.7 his name was Boomer I. he started a foundation to raise meney it was called team boomer
Name: jarret Comments
Name: Brad CommentsHello,I'm a 29 year old male about to turn 30 and am married to my best friend ,Heather.With out great family and friend & medical support it is very hard to cope and live w/ CF.We have 4 dogs of are own and they keep your spirits up.One day we hope to adopt or go w/ a donor to have children.Your site is very nice and insiteful.Best of luck and keep up the faith.Live life to your fullest!
Name: ashley Commentshiya my name is ashley i also have cystic fibrosis im already 16 although i dont look it . i live in scotland and im the onlt one in my family who has cf i just wondered if there are ever times when u just wish u were normal ?
Name: Heather Crossman CommentsI am doing research on my disease for a speech in my college class that I am taking this summer. Your site helped me learn more about what I need to know whenever I grow up and if I need to tell me friends or not. I thank you again.
Name: gary Commentscould some one tell me what it was like to have a portocaf fitted and has it helped or hindered
Name: Joy O'Quinn CommentsThank you for making this page... I think it will help me understand what my friend Ryan is going through. Many thanks again, Joy O'Quinn
Name: Ashley CommentsHi, I work for the CFF in New Orleans. We are part of a contest called Campaign for Your Cause. One of my volunteers told me about your site. Would you possibly post something to your friends about helping us out? We are really trying to carry our weight in the fight against CF in terms of raising money for research, but it has been a struggle since Katrina. We have 2 weeks left in the Campaign. Take a look: www.campaignforyourcause.com Thanks! Ashley Mills Executive Director, Louisiana Chapter
Name: jana caplan CommentsI have a son who has cf and he is 9 yrs. He dosn't know anyone else with cf I am going to have him read your web site. He is just starting to relize he is different from his buddies and I think he will get alot from what your site has to say. thanks for doing this!!!
Name: jana caplan CommentsI have a son who has cf and he is 9 yrs. He dosn't know anyone else with cf I am going to have him read your web site. He is just starting to relize he is different from his buddies and I think he will get alot from what your site has to say. thanks for doing this!!!
Name: Anita CommentsI had never heard of CF until a month ago. I am 29 years old and 24 weeks pregnant and we found out our unborn daughter has CF. All the cells came back from the testing and she has a severe case of it. I am trying to learn what I can but I am very confused and scared. Thank You for your thoughts and honesty.
Name: tanya Commentsi think that we need to do more to help people through this
Name: Laarni yet CommentsIm a respiratory student from california and one of the most interesting case that ihave study so for is cystic fibrosis and i hope that people will realize how important it is to know more and how people who have cystic can live a normal life.
Name: Rena Perry Comments
Name: Candi, 26/CF CommentsHey, nice page!! Thank you!
Name: jed CommentsHI MY SON Has cf he is 10 yrs old he is doing good hhe e not been in the hospital since he was 3yrs old he sometimes gets depressed.I wonder what furture will hold for him somtimes.I guess all can do is get the the most out of life with him
Name: Mike CommentsThank you for a very imformative site. I'd always heard a bit 'cause soem of my friends have CF but this has really expanded my knowledge on the situation and I can relate better to their experiences. I also used some of your information in a school project, so thanks :)! Good luck with everything and God Bless.
Name: Pete CommentsHi everyone. Im 34 and have CF. Its been rough the last two years or so. Good luck to all of you.
Name: paige Commentshow can i talk to people with cf
Name: megan CommentsHI MY NAME IS MEGAN AND IM 15 YEARS OLD I HAVE CYSTIC FIBROSIS AND AM DOING GREAT. I HAD A FRIEND DIE FROM CF THOUGH. I MET HER FROM MANY HOSPITAL VISITS. SHE WAS 26. WELL I JUST WANT SOMEONE TO TALK TO. OLDER OR YOUNGER I DONT CARE. I HAVE WINDOWS LIVE MESSENGER SO IF YOU DO ADD ME PLEASE. :)
Name: Kathy CommentsHi Ryan, I just found your web page and thought I'd respond. First, it looks great. I am 55 years old, so maybe am the grandma on your guest list. And, I am a grandma literaly. I have a son who is 27, he is married and they have my little namesake who is almost a year old. My health has been pretty good all these years, though my lung function has been going down at a faster rate the last few years. So, I am slowing down. I don't have as much energy as I have had before. I take pretty good care of myself, get my sleep(very critical), meds, chest therapy, exercise, eat well etc. and am a Christian, so have my faith to help. I hope I can be an encouragement to all you younger people. I have a wonderful husband. I cherish each moment, I never thought I would get so many! So, you never know what the future will bring. Nor do you know what you have to bring to this world. Each one of you is a gift and a blessing to those around you, never sell yourself short, even if you don't think you have a long lifetime of 60 or 80 years.
Name: bailey Commentsmy name is bailey and i am in the 9th grade. i was assigned to do a project on a disorder/disease, for biology class. One of my closest friends has CF and i wanted to learn more about it. Your website has greatly helped my knowledge as a student, and as a friend. My friend has been out of school for a while now, and im really scared that something might have happened to her. But, anywho, thanx again for your very educational and supportive website. I really learned alot. (ps: i see ur a steeler's fan... me too!! :p )
Name: Molly Commentscool website, but i must say some of the things aren't true and i'm just 11 its scary to hear that i might die at around 35. But i go to a wicked hospital in London, England.
Name: jade CommentsI am 11 years old and have cf i got diagnosed with cf when i was 7...but i had never heard about it before.i would realy like to talk to people with cf about 11-13! As i no one to talk to talk to about it and would like to! please add my hotmail it is JADIE95@hotmail.com (with the capitals) xx thank you!!!! xxx
Name: phyllis simmons CommentsI AM NEW TO ALL THIS I REALLY NEED SOME FRIENDS TO TALK TO FROM TIME TO TIME, MY SON IS ONLY 5 MONTHS OLD. HE WAS DIAGNOSED WITH CF WHEN HE WAS 4 DAYS OLD AFTER HE HAD TO HAVE EMERGENCY SURGERY FOR AN INTESTINAL BLOCKAGE, I HAD NO IDEA WHAT CF WAS, I HAD NEVER EVEN HEARD OF IT. IS THERE ANY LISTENERS OUT THERE THAT CAN BE OF SOME HELP ?
Name: Rob CommentsFantastic website, How old are you and how is your health. Good luck im only 15 Rob
Name: paulina CommentsEnjoyed reading. All the best with the adoption and fostering! Will check in again.
Name: CommentsI lost two of my neices from CF, one 5 years ago she was 14, and the other 6 days ago she was 12. I miss them so much.
Name: Brittany CommentsMy cousin was diagnosed with CF almost 3 years ago when she was born. It has been difficult for me and my family because she looks and acts so normal but we know she can't live a normal life. In my bioligy class i am doing a report on cf and would like you to contact me and let me know what your life has been like living with it. Thanks Brittany
Name: Rebekah CommentsDear Ryan, I am so glad that I found your website. It gave me a little bit of hope. We just found out that my 7 month old daughter Kaylea has CF. My nine year old cousin died from it in 1997 and that was my first fear. I know statistics say people can live with it up into thier forties but I couldn't imagine it until I talked to you. Thank you so much and God be with you. CONGRATS on your daughter!!! Thanks again, Rebekah Summersville, Missouri
Name: Mausey CommentsThanks for the opportunity.
Name: Lilli B. CommentsI recently completed a novel, and one of the characters has CF. I'm currently incorporating revisions based on reviews by CF patients and further research on the disease. The websites have been tremendously helpful, anecdotes are especially enlightening. Your website was great and has great insights. Thank you so much!!
Name: KIKI CommentsI just want to say thank you so much for all the wounderful information that you give. You infor me in so many ways about 65 roses. I will keep you and your family in my prayers. always kiki
Name: Jenny CommentsMy daughter was born on 2/24/06 and her new born screening came back that she was at least a carryier so they did test and it came back that she does have cystic fibrosis. I am taking it really hard.
Name: Jenny CommentsMy daughter was born on 2/24/06 and her new born screening came back that she was at least a carryier so they did test and it came back that she does have cystic fibrosis.
Name: Elizabeth CommentsRight now the docters arnt actually sure if i have Cystic Fibrosis, i was actually diagnosed when i was 6 years old but then the docters said it was negative but now they think i have it again... i dont no
Name: Kaylie CommentsI love the site its like a Bible to me.
Name: Comments
Name: morgan Commentshey this is an awesome site and i wood love to hear more from you about how to deal with cf im currently in yr 10 and i live in australia
Name: Emily Commentsi lost my best friend to CF 7 years ago, when i was 9. it was the hardest thing to possible go through for me and i just cant imagine how hard it would have been living with CF, because just watching her live with it hurt me enough. For everyone with Cf be strong, don't give in, and Fight
Name: Emily CommentsMy bf is 18, and had CF, he has only recently told me about his illness, as he didnt want me to treat him any different and was worried that i would fuss over him, i am only 17, and have very little knowledge of the illness. I love my bf very much, and have become very worried after he had admitted 2 me that he has stopped taking his tablets and doing his daily exercises, i feel like he is giving up, i can see that he wants to live life normally, and he sees his illness as a weekness and never talks about it to me as he is ashamed of it?? he also goes clubbing every week drinking all the time, and tells me that he 'tells the doctor what he wants to hear' so that he doesnt have to go into hospital. It upsets me as i feel like im watching him die, and i dont know if i could go on without him, so to an extent he is killing me too. Any advice to help convince him to take his tablets?? Emily x
Name: Angel Brown CommentsMy brother had cf he die when he was just 18 and I was only 12 so now that I am Older I am just looking in to cf to see what it is all about my brother was born in 1975 i know how hard it was on all of us i just got done reading a book by Frank Deford about he little gril alex and made me want to look in to things a little more
Name: Brandon Madery CommentsI just want to comment on what a great site this is. You did a very good job explaining information that most CF sites don't discuss about living day to day with CF. Im 22 and very avid in exercising to stay healthy. Im captain of the Men's Track team in college and am currently doing research on CF at the Mayo Clinic. I enjoy talking with people about the disease. Thank you very much. I wish you all the best and good luck!
Name: John Simons CommentsHey, just came across your site and just wanted to tell you that you are an inspiration to all of those that have CF or any other fatal diseases. I have 5 children three of them have Cf. We didnt know that they had it until 2001. Our oldest daughter is 13, the second oldest is 12 and our son is 10. They all have cf and are doing good. The second oldest just finished her 15 day "cleaning out" stay at A.I. DuPont Hospital in Delaware and is doing good. Keep up the good work and coming from a foster child, the kids that you have taken in are so lucky. I was fortunate to be placed with a loving family that treated me as their own and you and your wife deserve a huge pat on the back!!! Good luck with the dogs and the kids and stay healthy. The Simons Family.
Name: kaylie Holmes Commentslove the site!!! Pray for Kaylie
Name: kay Holmes CommentsWe just found out that are little girl has CF she was sick for three months before the Doctor tested for CF. She was 6 months old when we finaly found out, she is now 7 months old now. So we are new to all this so anything that anyone would like to tell us I would really like to hear from you. Please fill free to e-mail me my name is Kay Holmes my daughter's name is Kaylie. ronniekayholmes@cableone.net
Name: josh Commentsum, i have cf and i (very stupidly) have become addicted to heroin and i smoke ciggarettes. i am only 15 and started using to dull the pain of my life expecancy. is anyone else with cf in my possition or able to help? thankyou
Name: sara miller Commentsthankyou for your wonderful web page as aparent is hard to deal with a child with cystic fibrosis and not many parents to talk about it so no support but doctors with you web pages i now no some of the life things my own daughter will face in the future and i thankyou so much. thankyou forever a friend sara
Name: Joe Pettigrew CommentsGreat resource
Name: Maureen Cooper CommentsThanks
Name: Comments
Name: Joe Staponski Comments
Name: Ronny CommentsYour webpage is very informative for me. I'm a complete beginner to weight training. I'd like to make gains as fast as possible, but when I ask people how I should go about it all I keep getting different answers. And for those who are just getting started it can be very confusing. I understand what you are going through because I went through the something when I began bodybuilding. We all have to start somewhere, like there <a href="http://steroidportal.com/" target="_blank">http://steroidportal.com/</a>, and it can be overwhelming at times because people often make things more complicated then they really are. When you put aside all of the hype you can see that building muscle and losing fat is not very complex. What I am going to do is outline a good weight training, nutrition, and supplementation program that you can follow. You do not need to have much exercise equipment. In fact you can make great gains by training in a small home gym. So by gradually increasing the workload you put on your muscles your body will become bigger and stronger.. I'm looking for something else.
Name: kimberly Commentsi would like to chat with people with cf 11-13 years old
Name: rich Commentsexellent site
Name: julia Commentshello, I think you are a very honorable person. living with CF and still finding jobs. and just looking at life the way any person would. I have to write an essay about CF and it's intresting to learn about.
Name: Janelle Carr CommentsHi there Yancee. I just wanted to leave a quick note to thank you as you have helped me to get a better ubderstabding of the disease which my friend has. You are truly an inspiration.. Best wishes
Name: tanya Commentsi think its a good idea to tell people with or with out CF about the disease. i have read you web page and i realyliked it. i have even used it in my GCSE course work. thanx for your help
Name: Megan CommentsI think it is great how you and others with CF can live with it. It has to be a difficult life, but maybe that's just me. Well i was just doing a report on the disease adn stumbled by this website I just wanted to say I think with what you guys go through it is amazing.
Name: Meagan CommentsThere is a good chance that my 14 month old son has CF. We are going to Cincinnati Children's to have some test done. I was trying to learn more about CF and living with it. Thanks so much for putting this site together. It helped us out!
Name: monica bore Commentsi'm so glad too find some where i can go to let myslef free to exspese my slef i'm glad you made this space
Name: Ruth Briggs-Greenberg CommentsHi - my husband and I are carriers, pregnant with our second child. The first one doesn't have it, and I found out while pregnant with her that I was a carrier. So here I am, going to wait until week 11 to do a cvs and find out. Feel nervous, and I know we were carriers and got pregnant on purpose. Husband looking into what insurance options are, and besides, at my age 39, it may not take.
Name: Graham CommentsHi there I'm a medical student and hopefully reading your notes about CF will help me understand patients with CF better so I can help them more appropriately when I qualify as a doctor- thanks for an informative and personal site :)
Name: Car pictures CommentsGood Site! See Car pictures http://car.moodgo.com <a href=http://car.moodgo.com>Car pictures</a>
Name: Ted Allan CommentsMy wife and I just found out that we are both carriers for CF. We are expecting our second child in May and there is concern the baby has CF. We had an abnormal NT scan early on. Other then getting an amnio done, does anyone know if an abnormal NT is indicative of CF? A CVS showed that any chromosome problem was not the problem. I was just looking at this site to find out more about CF. Very informative and well presented!
Name: Adriana Comments
Name: Lupe CommentsI hope to meet you soon and that you stay healthy.
Name: natalie Pece CommentsI am 25 years old with CF living in Halifax Nova Scotia Canada. I am actually getting married this comming September 22,2006. I can't believe it - I am not really a sick person and worry that it will come out of no where. When I was young I never thought I would make it this far ~ But remain positive. Here I am ~ Everyone that I know with CF has passed. Life is a gift.This site is a nice treat. To read what no one else understands...... Very warming to the spirit to know that I am really not alone!!!
Name: Rebecca CommentsMy son has Cystic Fibrosis. He was diagnosed at the age of four months. I took it really hard at first but now everything seems to be in place. My son is the greatest and I would never trade him for another. He is a normal little 1 1/2 year old. He was walking by 10 mths. He is starting to talk. Thank you for making this web site. I am a single mom with two kids and I work full time and I am also online schooling full time. I came across this web site while looking for information for my research topic, of course my research topic is How to live with Cystic Fibrosis. Well thank you for your time and I wish you and everyone with Cystic Fibrosis the best!
Name: Jennifer Comments
Name: sam CommentsVery nice site...
Name: david CommentsNice site and well presented with some good information….
Name: Lexie McCarty CommentsI am 14 years old, I have three sisters and two brothers. I have Cystic Fibrosis. I think I take it pretty well, I often get frusturated because I get sick alot and sometimes I miss out on alot. But my mom says to always be positive no matter what happens, it really helps. I don't think about my desiese, doing my treatment and taking my vitamens really helps.
Name: Pete CommentsCouple of weeks off work while I am doing the IV routine, and seeing whats out there. Just let you know that I am 40 plus and able to work full time, go sailing etc. I know it is not this way for everybody, I have had great friends who never made 30. But the treatments these days are real good and if you have just become aware of this "Thing" please don't despair.
Name: Kelly CommentsMy friend Jeremy had CF. He died about 5 weeks ago. He loved computers just like you. He was only 15 years old. We really miss him alot. CF is a terrible terrible disease. Hopefully there will be a cure one day!
Name: KAREN BELONGE CommentsYOUR SITE IS REALLY NEAT. I HAVE 2 KIDS WITH CF.MY SON IS 9,MY LITTLE GIRL IS 2.SHE'S ONLY BEEN IN THE HOSPITAL 2 TIMES. MY SON IS ALWAYS SICK. HIS DOCTORS TELL ME THAT THEY HAVE NO MEDICINE FOR HIM.SOME HOW HE'S ALWAYS IN A PRETTY GOOD MOOD.ALWAYS PRAYING FOR A CURE.
Name: Phentermine Commentsgreat site both in content and design. keep it up.
Name: David Jameson CommentsIm a first year medical student at the University of Edinburgh in Scotland, and have been studying CF as part of my course. Your site was really useful in giving a real life perspective on living with CF, as opposed to the more medical side of things. Your site is a great resource for CF sufferers everywhere, and im sure will be very useful in helping people understand what CF is and its social effects. Great site, all the best Dave
Name: Laura CommentsThanks so much for this website. I am doing a project and it has really helped and touched my life. My prayers are with all of you with CF God Bless, Laura
Name: kt Commentsive been doin a school project on cystic fibrosis. i cant imagine wot it would be like to have it and how hard it must be before you get used to having it.
Name: sum1 Commentsello ppl
Name: Rebecca E. CommentsI'm 17 and was born with CF, thanks for you site. feel free to visit mine, I've seen some great results. CF is not with out hope!
Name: Nadia CommentsGreat site, I am developing a new website, your site will become my reference.
Name: Caroline CommentsYancee, I enjoyed reading your homepage. My husband, who is 28, has CF. He is in remarkably good health, mainly from taking extra good care of himself. He does the occasional course of TOBI (maybe once a year) and he recently had a picc line in while recovering from sinus surgery. Other than that, though, he hasn't been hospitalized for his CF and his PFT's are better than mine! Have you begun using hypertonic saline treatments? His doctor at UNC-Chapel Hill has him doing hypertonic saline nebulized treatments, as well as Xopenex, while he is being clapped on. He's been doing this for over a year and has found it to work really well for him. I was just curious if most other CFers were using this treatment since it's relatively new. Best wishes for good health. Please let me know if you hear of any potentially new treatments. Caroline Puckett Columbia, South Carolina
Name: Komeng CommentsI live in Bali – Indonesia and really like your website. Thanks for the good information and entertainment. Keep up this great resource.
Name: Dave M CommentsThis is a terrific homepage what a great resource for people both with and w/o CF. I am 31 years old and have had 2 bilat lung transplants. The 1st on 10/09/02 and the 2nd on 01/28/05. Just surfing around different CF homepages and chat rooms to let people known that I am so greatful for the 2nd and 3rd chances at life that I have been afforded and if anyone has any questions please feel free to e-mail me.
Name: jcooper Comments
Name: Lynn CommentsI am 22 weeks pregnant with what looks like a child with CF. I am devastated. My doctor says that I have to think about terminating my pregnancy. I just can't believe that I'll have to make such a decision. I just don't know what to do. What kind of life will he have? Will he make me feel guilty for bringing him into this world knowing what he'd have to go through? Do I have the right (is it fair) to do that to him? It's one thing having a child diagnosed after birth and another as an unborn child... I can't see myself doing such a thing, but on the other hand I want his well being. What should I do? Someone please write to me. Lynn lynn.johnson@cssmi.qc.ca
Name: sherry thomas Commentsmy son was diagnosed at 18 months old he has had major problems with sinuses, pneumonia once and stomach complications on and off, he has always had severe leg cramps. now he is 5 and experiencing blue around the lips, sweating and major fatigue, he did fail his pulmonary breathing test,but they tell me its ok usually cf patients do, it has become an eating machine, but i am worried about the color change and fatique he says he is ok but acts like he is give out? what direstions can i go in now any suggestions?
Name: Kirstie CommentsI had a sister with CF who died nearly 6 years ago - she had a lung-transplant - I have been accessed for one too but not needing one just yet - interesting web page - I'm in England but the treatments sound rougly the same, although I go in hospital a lot more and home IV's more too. I don't let CF dominate my life - not sure whether that's a good or bad thing!!
Name: Andrew CommentsI am doing a research assignment on CF and your site is very informative and has helped me a great deal.
Name: eric CommentsMy wife has passed away from CF at the age of 25 Dec. 19 2004 and i am looking for a support group.
Name: lisa McSweeney CommentsMy daughters boyfriend has CF. Although young they are quite serious and I want to know what the future has in stor.e
Name: Comments
Name: bethany CommentsMy step brother has CF and its really hard watching him sometimes, but he is over all hapy. Just had a lung transplant not to long ago, and i am just completeing a project on it for school. I like to say that your website really helped me, and i would like to congradulate you on all your accomplishments
Name: angela rubio Commentsmy sister has cf
Name: shane CommentsI have an 18 month old son and an 8 month old daughter both have been diagnosed with cf my daughter has been in and out of the hospital numerous times from complication with cf and i am just tring to get some infomation about cf
Name: Hollie Miller Comments
Name: natalie pece Commentsdon't know any one with the disease that is alive.....
Name: Troy Riggenbach CommentsMy son Clint was born Oct 20, 2003. He was diagnosed with CF 2 weeks after birth.
Name: Commentshotels Las Vegas, bed and breakfast, accommodation, lodging, Las Vegas, Nevada, United States, hotels near Las Vegas,las vegas, Vegas, LasVegas.com, Vegas.com, Las Vegas.com, www.123lasvegas.info, LasVegas, Hotel, Casino, Hotel Reservation, Hotel Deal, Resort, Lodging, Reservation, Hotel Rate, Room, Hotel Special, Vegas,Travel, Show, Las Vegas Nevada, Entertainment, Las Vegas Review Journal, Wedding, Vacation, Restaurant, Newspaper, Strip, Golf, Package, Show, Ticket, Travel, Deal, Trip, Gambling, Golf Course, Car Rental, Night Club, Tour, Attraction, Vacation Deal, Shopping, Tourism, Nightlife, Dining, Spa, Airline Ticket, Holiday, Jubilee, Blue Man Group, Nightclub
Name: chuck hooper Commentsa close friend's son has cf. i am just trying to understand more about it.
Name: Jessica CommentsMy little nephew has CF, and we are all trying to deal with this. It can be very hard at times, definitely for my sister. We are trying everything to help raise moeny for the foundation so we can find a cure. It was interesting to read about your life. Thank you for the info!
Commentsi'm a social worker and work in cf in canada. i'm doing a presentation on chronic illness and wanted to get some additional personal insights of people living with cf. your website is informative. thanks for letting me look. annie
Name: Ellen CommentsI am am doing a school report on Cystic Fibrosis. I find this website very helpful, but also interesting. I will keep this in my Favorites.
Name: Roy Sanders CommentsPlease feel free to look at our web site and pass it on to any one that my be interested. Roy Chairman
Name: Annette CommentsI feel like I need to seek out more information to help my son.
Name: Jennifer CommentsI am a 24yr old living w/cf. Just want to chat with someone who understands what I feel from day to day!
Name: Suzi CommentsA friend of mine told me about this place. I love it. I will recommend you to all my friends. See you again next time I surf around.
Name: Becky Samuels CommentsHi: My daughter-in-law is expecting a baby and was just told by her doctor that she has a CF trait. The question is this: Is the trait as bad as the CF itself and could she pass it on to the baby? She's very upset and I want to calm her down. Thanks
Name: Yancee CommentsHello
|