Hello I'm 14, 15 march first, and I have cystic fibrosis. I'm fairly healthy, growing and gaining wait at an average rate, and my PFT's are always high 90's low 100's. I play OYSL soccer and have no difficulties keeping up with team mates, actually I'm an exceptional runner, running 800 m in approximately 2:20. But last November, I was going in for my regular check up and they found a bacteria in my lungs, and they said it was nothing to worry about, a lot of kids do get it, but of course I'm starting to worry. They started me on a nebebulizer (a machine to turn meds into a gas that I inhale directly) I've already done it for a month, went back for a throat swab, and unfotunately still had the bacteria. I'm doing it again and I've been doing it for a month almost now, and I've been slacking and have missed it about 3 times now. I got a lecture from my mom and she had told me that her cousin had died from CF at 19, and I'm getting sort of worried, I'm healthy now but how quickly can my health drop? Also if I keep up with my regular work out, and physiotherapy, what would my future be like?

Sorry for the long message just wanted to make it clear.

Thanks Eric

I have the pleasure of enclosing a first class
Article on your problem:-

Cystic fibrosis, often abbreviated as CF and also called mucoviscidosis, is a common hereditary disease in which the cells of certain glands in the body secrete large amounts of abnormally thick mucus. Accumulation of the mucus can block the ducts of these glands and eventually may block the passageways of organs into which the ducts empty. Many organs may be damaged by this accumulation of mucus, particularly the lungs, pancreas, and liver.

The first symptoms of cystic fibrosis usually occur during infancy or early childhood. Infant deaths from cystic fibrosis are often caused by a blockage in the intestines. Patients who survive early infancy develop breathing difficulties because the thick mucus blocks their air passages. Many patients also suffer from frequent lung infections. Lung problems are the most common cause of death of CF patients. Cystic fibrosis patients may not be able to digest their food completely because plugs of mucus may prevent the pancreas from secreting digestive enzymes. Physicians can diagnose CF by testing the patient's perspiration. People with the disease have much salt in their perspiration.

In 1989, researchers identified the abnormal gene that causes cystic fibrosis. This gene is located on chromosome 7, one of the 23 pairs of chromosomes in human cells. A person who has two CF genes on this pair has the disease. People who carry one normal gene and one CF gene do not have the disease themselves. They are called carriers. A child of two carriers has a one in four chance of inheriting cystic fibrosis. Because doctors know the gene that causes CF, they can often predict which child will get the disease.

Cystic fibrosis cannot yet be cured. Doctors use antibiotics to fight the lung infections. Digestion can be improved by special diets and by pills that contain the missing enzymes. Physical therapy, anti-inflammatory drugs, exercise, and special aerosol mists inhaled by the patient can help loosen the mucus from the air passages so that it can be coughed up. A drug called DNase is being tested for treatment of CF. The drug is genetically engineered from an enzyme that occurs naturally in the human body. DNase helps break up the mucus in the airways. In 1993, doctors at the National Institutes of Health (NIH) used a technique called gene therapy for the first time on a patient with cystic fibrosis. They replaced the abnormal genes with copies of normal genes.

Contributor: Michael G. Levitzky, Ph.D. Prof. of Physiology, Louisiana State Univ. Medical Center.

Thank you but I'd like to know, how healthy am I? I personally think I'm quite healthy, like I'm 5'8 and weigh 124 pounds and my PFT'S are high. Should I be doing my physiotherapy more? Exercising even more?

I've heard the life expectancy is 35, and I want to know what to do to exceed that.

If any teenagers with CF my age share any info about there health that would be really appreciated.

I know a girl who is 12 and has CF. She is on a nebulizer three times every day. I'm told that is a preventative treatment and then when she is suffering from a lung infection, different medicine or antibiotic is added. She also takes enzyme tablets with each meal.

She is very healthy according to her doctors. She does have lung infections once in a while but recovers quickly. Sorry, I'm not sure about her numbers, but I'll check.

She is an avid swimmer, too.

You sound like you're doing great. Follow your care plan and listen to your doctors.

Your mom loves you. That's all. It's hard for us moms not to lecture... : )

As far as what your future will be like, Can't help you there. I wish I knew what mine is going to be like. Lol.

A day at a time and live every one of them! Best wishes to you Rolcam

Thanks for the response.

Fortunately I'm only doing it twice a day, on top of my physiotherapy, and that is annoying. So I could imagine how it is three times a day.

I also take the enzymes, but when you get on a routine of taking them, it's not that bad.

Thanks, Eric

Oops, I called you by the wrong name.

I was wondering if you know anyone else your age with CF? I gathered from your question that you didn't.

The girl I wrote about would love to talk with another person her age dealing with CF. She is thinking about it and wondering the same things you are.

I should have mentioned that she is very athletic and had I not been told she had CF, I would have never known.

Happy Birthday, Eric!!

I know absolutely know one of my age with CF, but I'd love to talk to someone with CF.

I've had the same thing, I was playing goalkeeper for soccer, but didn't enjoy it as much, no one thought I would be able to play as a player, but I've managed to become a player, and play on a team that goes down to a different city every other weakened.

and thanks =P

Have you tried to find anything else besides this site ? What about your doctor? Do they know of a site where you can chat with others?

The girl I know is younger than you and, I know, a girl, but I'll run it by her the next time I see her. : )

The soccer thing sounds awesome. Great job. Way to show 'em! I'm certainly not a CF expert, not even close, I just think your future sounds pretty promising--with the attitude you've got toward taking care of yourself and how well you are today, right now, I think you should be proud of yourself and keep it up! Take care and have fun, too : )

ahah thank you verry much =)

You can find more extensive info on

Cystic fibrosis: Coping and support - MayoClinic.com

And not only that, but also offer great advises about where, and how you can find a support group.

There is a great chance that you can find someone, very close to your situation, in age, sport activity, etc. who could offer you his/her experiences, and based on this personal experiences, could be in the best position to ease your anxiety.

Wish you all the best and take good care.