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PLEASE READ!!!
- Thread starter anonymous
- Start date
Hi, my name is Nathan and i live in Florida, i am 17 years old, with CF and 120% lung function. I have found the less you worry, the better you do. I am perfectly healthy, i do pulmozyme and vest therapy at night, and sports, scuba dive, regular school all the other time. Keep your head up, If you need to talk, my SN is Xpreme2001x. Averages mean nothing...boggle the doctors <img src="i/expressions/face-icon-small-smile.gif" border="0">
sweetgrl2luv
New member
hi my name is ashleigh i am 20 yrs old and i have CF i would like to met other people with CF. Annie i get upset to sbout things i read but i have great loving family and friends to talk to. and the life span for CF has gottin higher then from 10 years ago. there is alot of research being done and they are finding better medicine and treatments to help this illness.. just keep thinkin postive..... i would like to have anyone email me. Sweetgrl_2luv@yahoo.com
<img src="i/expressions/face-icon-small-smile.gif" border="0">Hi Annie, My name is Gary and I am 56 years old and have CF. I have a sister Kathleen, who is 60 years old and she also has CF. Another sister was 62 years old when she passed away with CF, and I believe that she would be here if she had gone to an adult CF center sooner. My sisters and I started in a clincial protocal at NIH in Bethesda, Maryland in the Summer of 1997 and since then we have received the best medical treatment available. In addition we visit the CF Adult Care Center at the John's Hopkins Hospital in Baltimore Maryland. I know that you are going to a CF Center and believe me, It will help you live a much longer life than you might think. The medicines now available and the ones being introduced along with chest PT and using the vest and flutter will help you live a long life. I know because it has helped my sister and I and we both plan on being here alot longer. Just do what the doctor's tell you, take all your medications and do your chest PT and you will be okay. God Bless You.
Exactly Lois, when my son was diagnoised, most of the teenager's at that time were dropping like flies. It really scared me and i thought that my son wouldnt live passed his teen years. He is now 22 yrs old and i have hopes now, which i didnt when he was younger. I am learning alot from this forum and im sure my son is too.
The truth is Annie that any of us could die at any time. Again if you are a Bible reader it says' time and unforeseen occurance befall us all.'We could get in a car accident or be in a earthquake or a victim of a violent crime. We don't know. But just think of the protection that you do have because you are going to avoid all the pitfalls and mistakes of other young people. You aren't going to drink to excess you are not going to take recreational drugs or smoke. So you are way ahead of young people today. They think that nothing can happen to them and they live there life that way and waste many good years of their lives with problems beyond belief. So do as the rest suggested. Make the most of your life , focus on what is important. Don't take things or people for granted. And they are right stats are stats not people. They are only numbers. Do your best to take care of yourself and try not to read too much that you become depressed. Sometimes we can be our worst associate. Be around those who have a positive outlook on life. Do good.
Hiya Annie I work at a hospital with a cystic fibrosis clinic and many of our patients are over 30 and have a fantastic quality of life. Many of them are married and have children. The most important thing in CF is to look after yourself and follow the medication regimes given to you by your doctor. Try not to get too stressed either because stress won't help your health and fitness.I hope that I've helped to lift your spirits and I'm sure you will have a fantastic life.Toni x
Hiya Annie I work at a hospital with a cystic fibrosis clinic and many of our patients are over 30 and have a fantastic quality of life. Many of them are married and have children. The most important thing in CF is to look after yourself and follow the medication regimes given to you by your doctor. Try not to get too stressed either because stress won't help your health and fitness.I hope that I've helped to lift your spirits and I'm sure you will have a fantastic life.Toni x
Hey Annie I am a 23yr old with CF and I know many people past the age of 32. What you read were just statistics and you cant always believe everything you read. Yes as you get older it does get a bit scarier but as long as you take care of your self there is nothing to really fear. I am sure if you do more research you will find others with CF older than 32.Marisol-also at boriquapoo@aol.com
how cabn you get rid of cystic fibrosis <img src="i/expressions/rose.gif" border="0"><img src="i/expressions/face-icon-small-sad.gif" border="0"><img src="i/expressions/moon.gif" border="0"><img src="i/expressions/face-icon-small-confused.gif" border="0"><a target=new class=ftalternatingbarlinklarge href="mailto:nobody@nowhere.com">null</a>
I recently found out someone I am close to has cf, and I was initially upset after reading the median age, but please remember, a median is NOT the same as an average. A median is just the middle number. That means that there are just as many people older than 32 as there are younger!<img src="i/expressions/face-icon-small-happy.gif" border="0">
Diana - You put it so well when you write about liviing with fear. The fear, I think, can be more insidious than the disease. Although my story is different, notice this common thread to yours: I am 39 and until about 10 years ago I had ABSOLUTELY no problems with CF. It was as if I didn't even have it. Then I got my first bout of hemoptysis, a very bad one, and it scared the LIFE out of me and I was sure I was going to die. Since then, although my health has been fair (though never as good as before), I live in absolute fear of it happening again (which it has every year or so). The fear led to panic attacks, anxiety, and then later depression. I started seeing a therapist who specializes in dealing with chronic illnesses, I found it very helpful to get at the underlying fear beneath my thinking. It has taken me a long time to come to a sense of reality about my CF, and of course I have confident phases and full freak-out phases! I think it is essential that you examine (through therapy, journalling, talking to friends, whatever) your fears that underlie the idea of getting an IV. That was a traumatic experience for you, and until you have emotionally worked through that experience, it will still haunt and control you. There is something called hyper-vigilance, which is a habit of anxiety in which one pays minute attention to every sensation of the body, thinking, "Is this a problem? is that a problem? am I getting sick now" etc. I was hyper-vigilant for years after my hemoptysis, and at every cough I would spit into the sink thinking "Am I bleeding now? How about now? How about now?" (kind of like the Verizon commercial!!). With therapy my hyper-vigilance has subsided, and I have been trying to understand what my own traumatic experience represents for me: fear of death, fear of decline, fear of worsening CF, fear of being out of control, fear of being embarrassed in public, and so on. I am definitely doing better with these issues and you will be able to get to that place too, though I know it seems far away now when one is so gripped by panic and fright. Those can be crippling emotions, preventing you from feeling your real feelings about yourself and your actual CF condition, whatever it is.Feel free to write me whenever. Let me know if you decided to do some therapy or write or talk or whatever to try to work through some of the issues.Laura, California
+Im just going to let you all know that GOD is the healer of Cystic Fibrosis. He has healed me and he will heal you also. You were given this disease for a reason, you have the strength to overcome. I f you want to healed, step out in faith and grab ahold of it, claim it in Jesus mighty, holy name.
+Im just going to let you all know that GOD is the healer of Cystic Fibrosis. He has healed me and he will heal you also. You were given this disease for a reason, you have the strength to overcome. I f you want to healed, step out in faith and grab ahold of it, claim it in Jesus mighty, holy name:
I don't know a lot about CF but I do know statistics mean nothing in survival, here's why. In 1991 I wanted a child, after tests the doc said I could not possibly get pregnant. I did. Then my sweet son insisted on being born 3 1/2 month early with a diaphragmatic hernia. Chances of survival, nil. He made it just fine (after two surgeries, two month ventilation, four months in hospital). His lungs weren't great but he was ok. Then in childhood some bad bugs trashed one lung (a rare consequence,didn't find out until he was 12). He's doing fairly well now, his better lung has grown 30% larger than normal to compensate. I call him a one lung wonder. He has a great attitude. I know he's very lucky and it's way different than CF but our bodies have an amazing ability to cope with adversity. All I know is that I had to believe all along,even when things were really bad, that he was going to be ok, because you can't live any other way. Take care and enjoy life to the fullest.
i annie also have cf and sometimes i get scared to but you can't live your life thinking about what or how long you have to live . you have to look forward to the future and keep taking care of your self.remember that they are laways trying to find acure each and every day. so look and take care of your self. i'm 23 and have alot of respitory problems but i still look toward the future. sincerelyand may god be with you Keep you head uphigh
G'day Annie and CoMy best advice at 28y/o and great lung function is stop worrying (I know it is easy to say) because worrying cures nothing. Get up and exercise, do acupuncture, sleep plenty and eat bucketloads of fruit and veges,fish, pasta, rice etc (depending on your weight needs) and live life. We only get one life and I am determined to enjoy mine.Make the most of every day, and you'll find that you get more out of life than most people that live twice as long will. Start to enjoy rain, sleet, hot sun, grumpy people make great laughing stocks, and please take charge of your life. Who knows when that cure is going to crop up?And that goes for all of you!Love and understanding,Cindy28y/o cfer Australia