Cystic Fibrosis any one?

Question

I have cystic Fibrosis. I'm 13 and it really sucks. I was wondring how many other people out there share my pain. So if you've got it don't be afriad to tell me.

Answer 1

I'm 39 and have Cystic Fibrosis. Two years ago I had a bi-lateral (double) lung transplant and although I still have to follow a somewhat rigid medical routine I can breathe freely for the first time in my life.

There are a lot of things about CF that do suck but they've made a lot of advancements in treatment over the years so the standard life expectancy keeps increasing. There's no reason you shouldn't plan to have a long life and be able to do most of the other things that people do - go to school, college, work, get married, etc. You may or may not be able to have kids. You didn't indicate if you were female or male but there are various aspects that might make it a challenge although not impossible. You'll need to talk to your docs when the time comes.

It's hard to know when to tell new friends about the CF. It's not like you can probably hide it very long but they'll take their cues on how to act from you. Don't be afraid to share information or answer questions. Some will feel sorry for you and others, meaning well, will drive you nuts offering cough drops, etc. Having CF gives you a lot of opportunities to make jokes about your health - for example, the nebulizer treatments are just legally smoking indoors and when it's time for tune-ups just refer to your IV's as juice.

At the time I was growing up there was an annual CF camp in the St. Louis, MO area. I went from age 6 to 16 and had a blast every year. It's nice to meet other people with CF and be in the majority even for a few days...not to mention have a break from the parental units and give them a break too.

It's very tempting to skip doing the daily physiotherapy and meds. I did and I think most of us did at least somewhat frequently as we got older - if nothing else in an attempt to feel more normal. Just be aware that every time you do you're damaging your lungs and body just a bit more...and when the time comes that your docs present transplant as a potential option you need to know that your compliance with medical routines will greatly impact your eligibility for transplant.

My transplant experience was excellent and CF'ers generally do very well with transplant since we're already used to the medical routine - particularly keeping on schedule with a lot of meds. I take about 60 pills a day...but no more oxygen, no more nebulizer treatments, no more CPT/vest, etc. Transplant cures the CF in your lungs, although you still have the digestive aspects. You'll probably end up diabetic at some point, due to the impact of the CF on your pancreas and the transplant drugs may affect that but it's pretty easy to control. Some of us, as we get older, also find that CF affects our liver functions (about 5% of CF patients)...easy to deal with, just another medication.

Being a teenager is challenging even without something like CF. Given your age and the feelings/issues you're going to experience over the next few years you really need to find someone you can talk with and be honest with no matter what your mood or feelings. It doesn't have to be your parents or another family member - it can be anyone you trust. Your CF team may be able to put you in touch with an adult CF'er in your area, which would give you an opportunity to ask more questions and get feedback from someone who has likely had similar or the same experiences.

I wish you the best.

Answer 2

sorry to hear about you having this terrible problem I dont have it personally but do know some that do i assume you are doing the postural draining but you can tell your parents that as of 2 months ago a new treatment was developed for this that has shown some good results called Immunocal Platinum developed by DRS wolf Drogue and Jimmy Guttman at Immunotec Research in Vancouver Canada is also available in USA, Australia, Germany hope this helps gorbalizer

Answer 3

If you would like to join the largest on-line support group for CF, go to http://www.Cystic-L.com and check it out. There are about 1,000 members worldwide and an amazingly complete on-line reference library.

You would like that better that this venue, because there are so many people who would like to meet you and share information and thoughts with you.

I'd suggest that you "manage mail" to receive all messages in your e-mail for a while and see what you think. If you want to engage in a group discussion, be sure to use "reply ALL" instead of just "reply." "Reply" will only send your answer to the one person who posted the original message.

Answer 4

Please read my info on Cystic Fibrosis.

also on monday night 9pm EST 1-877-626-6246 doctorc call

God Bless :)

Answer 5

my cousin has it. but it really hurts me too because i see him going through. he is ur age. and i agree it does suck

Answer 6

Oh, no thank you, already have it, don't need it again.