Hi,I am 42 years old and was diagnosed when I was 6 months old. I am the youngest of 11 and the only one with CF. I LOVE my vest and yes I take Zithromax everyday. I have been on it for about 1 1/2 years now. Feel free to contact me anytime - would love to be able to help anyone @ Rosienpete@yahoo.com. Where do you live?
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
newly diagnosed
- Thread starter Bec
- Start date
Hi,I am 42 years old and was diagnosed when I was 6 months old. I am the youngest of 11 and the only one with CF. I LOVE my vest and yes I take Zithromax everyday. I have been on it for about 1 1/2 years now. Feel free to contact me anytime - would love to be able to help anyone @ Rosienpete@yahoo.com. Where do you live?
Hi! I was diagnosed at 11, and have lived my life fairly normally. I'm 21 now, and I'm a double major at school,I'm a Congressional intern, and I work for my political party's state board. I'm also in a million things at school. CF doesn't hamper my activity except when I try to do everything w/o taking care of myself. I would say the biggest piece of advice I have to offer is that you need to really listen to your body. I try to ignore it and ignore it, and I've learned that doesn't work. I call clinic now whenever I feel even slightly weird for more than a few days, and this has really helped me out. I've had some long-term relationships w/ guys, and they've all be OK with it, so I haven't really had any problems there. Just be sure to listen and do what your body needs--sleep, eat, whatever. That's what I've learned so far.
Hi! I was diagnosed at 11, and have lived my life fairly normally. I'm 21 now, and I'm a double major at school,I'm a Congressional intern, and I work for my political party's state board. I'm also in a million things at school. CF doesn't hamper my activity except when I try to do everything w/o taking care of myself. I would say the biggest piece of advice I have to offer is that you need to really listen to your body. I try to ignore it and ignore it, and I've learned that doesn't work. I call clinic now whenever I feel even slightly weird for more than a few days, and this has really helped me out. I've had some long-term relationships w/ guys, and they've all be OK with it, so I haven't really had any problems there. Just be sure to listen and do what your body needs--sleep, eat, whatever. That's what I've learned so far.
Hi.I know I'm a bit young (12) to be answering adults, but I read your letter and wanted to tell you that I was just diagnosed 3 yrs ago. I'm doing awesome! I do the vest everyday for 30+ minutes. It's a great machine if you want to use it. You just put on the vest, turn it on, turn the knowb to the amount of time you want to do it, and sit on (or put something on, like I do) the pusher thing. It's easy for me to live with CF. At school I go to the nurse to take my pills and then go straight to luch. Sometimes I'm first in line! Hope this helps a bit. Good luck!Katie <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi.I know I'm a bit young (12) to be answering adults, but I read your letter and wanted to tell you that I was just diagnosed 3 yrs ago. I'm doing awesome! I do the vest everyday for 30+ minutes. It's a great machine if you want to use it. You just put on the vest, turn it on, turn the knowb to the amount of time you want to do it, and sit on (or put something on, like I do) the pusher thing. It's easy for me to live with CF. At school I go to the nurse to take my pills and then go straight to luch. Sometimes I'm first in line! Hope this helps a bit. Good luck!Katie <img src="i/expressions/face-icon-small-smile.gif" border="0">
The biggest thing I have learned about CF is that it the disease varies so much from person to person. There are so many different problems that can be tied into CF, and some people have them and some people dont (i.e. gastro-intestinal problems, sinus problems). Some people (like myself) culture things like pseudomonas and cepacia which have been known to cause terrible infections, yet I live and active normal life with them. Everyone is so different, and all I can say to you is to make sure your doctor understands that and realizes that there is no laid out plan or pattern for how a person with CF's life will go, it is not diabetes or something where everyone with it needs insulin and thats the story- people with CF can need a million different types of care. Also what the other girl said above, listen to your body- eating and sleeping (and exercising) can be the best thing for you.
The biggest thing I have learned about CF is that it the disease varies so much from person to person. There are so many different problems that can be tied into CF, and some people have them and some people dont (i.e. gastro-intestinal problems, sinus problems). Some people (like myself) culture things like pseudomonas and cepacia which have been known to cause terrible infections, yet I live and active normal life with them. Everyone is so different, and all I can say to you is to make sure your doctor understands that and realizes that there is no laid out plan or pattern for how a person with CF's life will go, it is not diabetes or something where everyone with it needs insulin and thats the story- people with CF can need a million different types of care. Also what the other girl said above, listen to your body- eating and sleeping (and exercising) can be the best thing for you.
Hi Rebecca,My daughter is 20 and was diagnoised at 2 mo. She is on the antibiotic you mentiion, often, and finds it effective. She also uses the vest, and loves it. It seems to get rid of the trapped air better than purcussors and manual PT. We have found, in our many years of travels on this road, that a CF specialist is a necessity. Even if you have to travel for 2-3 hours, it is worth it. A pulmologist is NOT a CF specialist, and CF seems to sometimes defy the approach they would take to the lung involvement of this disease. Hopefully you have a primary care doc that is willing to follow the lead of a CF specialist. If you can get a dialog going between a specialist and your primary it will eliminate you from having to travel too far too often.Best of luck!Marie, Rachels's mom
Greg:Where do you live. I knew a Greg with CF, adopted one child and married for many years, in Maine. If you are the same Greg e-mail me! maisoui39@hotmail.com. I knew you from Camp Sunshine, my daughter Rachel, is now 20, and has done well until the past few months. I have divorced and remarried, her dad just could not handle things. Would love to catch up!Marie Duplessis Dexter
hi bec i cant believe youve just found out that your cf.im kelly a mother of a cf child who was diagnosed at birth with cf she was very poorly with her bowels.she was under surgery when she was 1 day old. from then me and my partner thought that with her been so small she wouldnt even last the week.we suffered so much fustration and tears and still now i cant stop crying every time i look at her i blame myself for the cf.i have a two year old son who does not have cf.and its normal for you to feel this way about your cf,its very hard to take in every think the doctors tell you all at once.my little girl is now 7 months old but its very hard for to cope with giveing her medicine to her as specially her creon it takes 2/3 atemps to get it down her.you have to brake the captual apart and then give her it. <img src="i/expressions/face-icon-small-wink.gif" border="0">