Hi. I'm a 32 yr. old newly dx CF'r and am feeling really lost and alone. While I have a medical background and am relieved to finally have an answer to my multiple medical problems, it's still a lot to deal with. I'm looking for support people, advice, info, or people to just chat with who have been there. Please feel free to e-mail me. There is not a CF Center locally for me and I'm one of the few adults that my primary healthcare center sees with CF. As they put it, I'm a "trailblazer." I'm getting conflicting info from different docs and having problems already with insurance coverage. What do people think about use of mucolytics? Anyone on Zithromax? What do people think of the vest? I'd also really love to get some encouragment- how old are you? Do you have a family and does your CF adversely effect your family life? How do you feel you're able to live and work in the "real world" with your disease? Rebecca
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newly diagnosed
- Thread starter Bec
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hey becca,as you havent left your email address (could just be me not looking!!) i thought i would leave you mine <img src="i/expressions/face-icon-small-smile.gif" border="0"> feel free to email me at tinypoppet@hotmail.com im 19yrs old with CF btw, and was diagnosed at birth. hope to hear from you; must be a shock being diagnosed so late but it means your in good health! stay positive.
Hi Rebecca,Wow...32 and just diagnosed...is amazing to me. I will be 30 on Sunday...and was diagnosed at just a few months old. I agree with the other post if you have just been diagnosed means your overall health is fairly good.....which is a good thing. I can imagine the shock because almost 5 yrs ago I got the diagnosis of CF related diabetes. This is a good place for asking questions...and finding out about others with CF. I would be happy to talk to you...and answer any questions you might have....as I'm sure you have many...anyway...nice meeting you...take care!Dea
serendipity730
New member
Rebecca, Hi! I'm a 20 year old CF patient. I would love to talk to you about the ins and outs of CF, what meds I am on and such. My e mail is mar_md@yahoo.com. My aim name is serendipity730. Mary D.
serendipity730
New member
Rebecca, Hi! I'm a 20 year old CF patient. I would love to talk to you about the ins and outs of CF, what meds I am on and such. My e mail is mar_md@yahoo.com. My aim name is serendipity730. Mary D.
rebecca,you can email me anytime you feel like talking at boys_dont_cry_1982@yahoo.comi'm 20 yrs old and was diagnosed officially at 1 yr, though my mother knew when i was 1 month old that i had cf, because my older brother died of it and i had the same sympthoms. to answer some of your questions - i do not have a family yet as i am young, i date here and there and i was engaged to a wonderful woman [i'm a lesbian] but sadly, we called it off. i assume that would be a question - yes, i tell my lovers about my cf, pretty much right away. it has never been a problem, except of with this one girl, but we had other problems and cf was only part of why we broke up. in life, i study screenwriting and next year go to university to study english literature and psychology and cinematogrpahy [i'll be in school until i'm 40 i guess <img src="i/expressions/face-icon-small-smile.gif" border="0">], currently unemplyed, last job was at a medical insurance company. i have plenty of friends, who all know about my cf and are very much supportive.feel free to email me <img src="i/expressions/face-icon-small-smile.gif" border="0">
rebecca,you can email me anytime you feel like talking at boys_dont_cry_1982@yahoo.comi'm 20 yrs old and was diagnosed officially at 1 yr, though my mother knew when i was 1 month old that i had cf, because my older brother died of it and i had the same sympthoms. to answer some of your questions - i do not have a family yet as i am young, i date here and there and i was engaged to a wonderful woman [i'm a lesbian] but sadly, we called it off. i assume that would be a question - yes, i tell my lovers about my cf, pretty much right away. it has never been a problem, except of with this one girl, but we had other problems and cf was only part of why we broke up. in life, i study screenwriting and next year go to university to study english literature and psychology and cinematogrpahy [i'll be in school until i'm 40 i guess <img src="i/expressions/face-icon-small-smile.gif" border="0">], currently unemplyed, last job was at a medical insurance company. i have plenty of friends, who all know about my cf and are very much supportive.feel free to email me <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hey, welcome to the club!Don't feel you are alone, I was diagnosed at age 54. I am still trying to get a handle on my feelings about the whole situation. I think over the years, more & more "mature adults" will be diagnosed, as they look for answers to cronic problems. I think this site helps alot with questions and problems & feelings. I sure have appreciated it over the last few months. It has made me feel very lucky in my life. Look through all the old stuff, there are a lot of answers there. I have taken Zithro & many many others over my lifetime.Another website you might want to check out is www.mycysticfibrosis.com and www.cff.org Mycysticfibrosis.com has a phamplet on their website about adults with CF. It is really informative. Get a copy. MARY55W/CF<img src="i/expressions/face-icon-small-wink.gif" border="0">
Hey, welcome to the club!Don't feel you are alone, I was diagnosed at age 54. I am still trying to get a handle on my feelings about the whole situation. I think over the years, more & more "mature adults" will be diagnosed, as they look for answers to cronic problems. I think this site helps alot with questions and problems & feelings. I sure have appreciated it over the last few months. It has made me feel very lucky in my life. Look through all the old stuff, there are a lot of answers there. I have taken Zithro & many many others over my lifetime.Another website you might want to check out is www.mycysticfibrosis.com and www.cff.org Mycysticfibrosis.com has a phamplet on their website about adults with CF. It is really informative. Get a copy. MARY55W/CF<img src="i/expressions/face-icon-small-wink.gif" border="0">
Hello Rebecca -- I am a 38-year-old cf-er; I was diagnosed with cf at age 11, diabetes 5 years ago. I have been very lucky in terms of my health and would be more than happy to answer any questions you may have, provide "helpful hints" on what has or has not worked for me, or I can just be an "ear" while you talk things through.I've lived in numerous places, including Germany and England, which has provided me with insight into cf from other perspectives.It sounds like you are off to a great start -- asking for input from others' experience is invaluable.Joni
Hello Rebecca -- I am a 38-year-old cf-er; I was diagnosed with cf at age 11, diabetes 5 years ago. I have been very lucky in terms of my health and would be more than happy to answer any questions you may have, provide "helpful hints" on what has or has not worked for me, or I can just be an "ear" while you talk things through.I've lived in numerous places, including Germany and England, which has provided me with insight into cf from other perspectives.It sounds like you are off to a great start -- asking for input from others' experience is invaluable.Joni
Hi, I'm 43. Diagnosed at birth with CF (had older brother die from CF when he was 2 1/2). Been married for 22 years. 1 adopted child. Have overall had great health, except adhesions from the meconium illeus surgeries at birth and CF complications have caused many bowel obstructions. Have severe chronic chest wall pain - diagnosed as nerve damage. Respiratory has been basically normal, with occasional infections, until about 1 3/4 years ago when I was diagnosed with cepacia. My last FEV was 36% and I am on oxygen. Have good days, bad days. Hard to deal with the long breathing treatments 2 - 3 times a day, especially when I have to add home I.V. antibiotics (about 3 times already this year). I'm a full time pastor. I won't let it get me down, but do fight discouragement and frustration from time to time. I have very good support from my family, and am thankful for the strength my faith brings me. My wife and I are very encouraged to hear from all the adults with CF. Great question.Greg
Hi, I'm 43. Diagnosed at birth with CF (had older brother die from CF when he was 2 1/2). Been married for 22 years. 1 adopted child. Have overall had great health, except adhesions from the meconium illeus surgeries at birth and CF complications have caused many bowel obstructions. Have severe chronic chest wall pain - diagnosed as nerve damage. Respiratory has been basically normal, with occasional infections, until about 1 3/4 years ago when I was diagnosed with cepacia. My last FEV was 36% and I am on oxygen. Have good days, bad days. Hard to deal with the long breathing treatments 2 - 3 times a day, especially when I have to add home I.V. antibiotics (about 3 times already this year). I'm a full time pastor. I won't let it get me down, but do fight discouragement and frustration from time to time. I have very good support from my family, and am thankful for the strength my faith brings me. My wife and I are very encouraged to hear from all the adults with CF. Great question.Greg