My husband is 28 and is doing the same thing. He tells me i don't know what it's like and that he wants to be normal. I have tried to say that his normal is all the meds, but it doesn't work. he will go without his treatments for a while and then decide he isn't feeling so well and will do them for a week or so, until he feel s better again. i am concerned that this is not always going to work. one day he is going to not feel well and the treatments won't help. we've talked about this and he may do everything for a week or so, but then it ends again. sorry this is not much help, more of a vent for me. if you find something that works let me know.

No, venting is good! I've never actually talked to anyone before with CF or in the family. I'm a respiratory therapist and a single mom all these years and have not had much time to talk to anyone before.

The doctors keep saying they usually grow out of it, that it's the same for all people with chronic illnesses. I totally understand how they feel and I don't blame them! But which is the better of two evils? Reality is that they can't get away from it so would they rather be sick all the time and taking more meds and getting hospitalized all the time, or just do their meds and treatments everyday so they can have a normal life? I don't get it!

I'm 23 and have CF. I was a healthy kid. Mainly because my darling mother was there every step of the way. When I went out on my own I rebelled against everything because I was sick of it and wanted to have fun like everyone else. It took a toll on me and it wasn't until I grew up and got over myself that I realised that what the doc's were telling me was right all along. I think you have to be supportive of your cf loved ones. It doesn't matter how much we are told 'bout it, we already know. We have heard it a thousand times before. It's just up to us to make the decision to beat this challange. Support them, love them, don't ever give up on them. They will find thier way, in thier own time. This may not have beeen helpful but good luck. I know it's hard.

man, that's scary! My wee one's only 3 and has givin me MAJOR grief about treatments. I would have a duck if she stopped.
Good luck with your situation, I hope things work out very soon!
~hugsnkisses

I wish there was someting i could tell you that will make him see what is best for him. I am 39 and there are time I get tired of it, but I know if i put my treatment off I will only end up in the hospital. We all go through these stages, and in the long run it will be up to him

Hi everyone, sorry I haven't been on in a while to see everyone's replies. Been very busy! Thank you so much for all you words of support. You are all awesome! I keep praying for us all! Hugs, Tammy

YOu may also want to check out the neuropathy group... there are several subjects about this there.
http://dailystrength.org/groups/neuropathy

I really like the take our new clinic has on this. The doc says that he doesn't really like the term non-compliance. That suits me just fine because I hate it. My son has always been the sickest patient in the clinic his age. Somehow he's outlived most of them. He's also had many many errors made in his medical care that makes it difficult for him to trust the docs. However, as I was starting to say, his new doc calls it something else, and I'm drawing a blank. Anyway, the first time we were in there the doc said that he agrees that the regimen he has is way too difficult, and he would gladly agree that it's too much, and reduce the treatments. The problem is that his body will continue to have the illness, and it will not take a break when he does. He would prefer that we tell him if treatments aren't being done than to try to hide it. He won't get mad, he just wants to help in whatever way he can. He said that the grown up way to handle it is to take responsibility for your own actions and be truthful about what's going on. This attitude has really improved Bejamin's adherance to the rules. Having treatments that actually work helps, too.

My daughter is going thru this now. She is in the hospital because she thought she could skip meds and her vest. She is growing up now. She has to make it part of her life. As her mother I can't make her anymore. I just pray that she makes right choices.

Well, that is tough. I have CF and completely understand how he feels. However, I am 31 years old, and doing pretty decent. When I was born the life expectancy was 14.

My doctor tells me everyday that I am alive BECAUSE I do my meds, reliably all the time. I take over 45 medications, and it takes about 6 hours a day. I am not going to say it is not hard, but I did manage to have a mostly normal life.

One thing that always helped me was my doctor reminding me that it is ok to take short vacations. She said as long as I am aggressive all the time, and very compliant, and feeling at least average, it is ok to take the weekend off maybe twice a year.

I think as a healthy parent you have to try your damndest to relay understanding of what is being asked of him. Think of it as a job you hate that you have to work weekends and NEVER get a vacation from. And your boss only criticizes what you don't do. That would be very wearing right?

For me, having someone really understand and offer the vacation meant I pretty much NEVER take the vacation. It is just knowing the option is there and that someone (my doc) thought about how hard it would be to be doing all this all the time and had sympathy.

I don't envy your situation. I have a hard enough time convincing myself to do all the meds particularly percussion therapies and exercise, since they are long term investments with often short term discomfort.

Pretty much every CFer goes through that at some point in their lives. I wasnt diagnosed until 13 so I NEVER did my treatments the first few years. My thought was "I've lived 13 years without treatments why should I do them now?". I kinda screwed myself over. I am 20 now and on continuous 02 I let my health really go to seed and I am struggling to bring it back up. I am very good at taking care of myself but its really rough to keep my spirits up now that my past has caught up with me. The thing is in order to be normal us CFers have to do our treatments. Without them we get sick and cant be normal at all. I realize that now...and hopefully not to late either. I wish everyone the best with your loved ones. I hope they figure out what they are doing to themselves before they do irreversable damage.

I am 27 now with CF. Everyone with CF goes through "non-compliance". I did. Looking back, I know that there was peer pressure from friends, who I thought were friends, but never understood CF. But my advise is that if you miss your medicine now... you will regret it later! Once your PFTs go down, it is twice the hard work to get them back up! Seeing a counselor is a good idea too, just too let out frustrations of having CF. Hope this helps.

i know my girl is only 9 but the non compliance is there, more because she dosn't want the pain and nausia that comes from the meds is hard i then start to waiver and let her miss treatments i then spend nights awake waiting for the cough to get moist when i have to do the hospital stay or the angry mum to make her take the hour in the morning hour in the night of nebs the tablets the half hour of percussion at night i don't blame the kids even the young adults i find it hard to take a weeks worth of tablets if i get sick let alone a daily marathon of them for my whole life. most the adults i'v met with major medical issues have to find thier way with our love and support it's our support through the bad times that makes then want to be healthy and live longer... Just My Honest Opinon ... Drgnfli

My 18 year old has that problem, he really tries but I know its hard. He has alot going on, significant liver disease, lung infections, spleenology, insulin diabetic. He has it all! It's hard as a parent not to remind him of this or that, he even tells me he forgets, that is why I say stuff. Also when his cough gets worse to go to the doctor before if gets worse and he puts it off, then its worse than before. I just don't want him to ever give up, that scares me so much now that he is older.

My Fianc has CF. He went through the rebellious stage when he was in his teens - smoking, drinking, drugs ... the works. Now he completely regrets it... he frequently asks himself how many years he must have taken from his life from this period of denial. However, he can't take that back now... Everyone is entitled to a life and experiences the key thing is what you learn from it. Perhaps ask your son how he would feel if you were diagnosed with cancer but refused your chemo or radiotherapy because you "wanted to be normal" I know that sometimes seeing things from someone elses perspective can be particularly helpful (it may sound harsh but sometimes the truth has to be). It's true you will never know what it feels like when he takes a breath, you will never understand how he feels on a first hand basis... but as his mother you have been with him every step of the way. You were responsible for his care before he was able to do this for himself... so it is undoubtedly difficult to watch him neglecting himself. He will probably grow out of this phase and start looking after himself... perhaps give him some time and see how he gets on...? I know you're worried... you're a mother, it's your prerogative... trust in your son's better judgement and in time he will realise that he is the master of his own destiny.

xXx