19 year old CF son not taking care of himself

[erock77]

I think it helps to see what's going on with CF research. I love reading the CFRoundtable, an adult CF newsletter, they highlight the latest R&D going on with CF. It's incredibly encouraging. Also gives stories and insight from people w/ CF, the whole newsletter is written by adult CF volunteers.
I watched a webinar from the CFF last week, it's amazing what's going on with the mutation correcting drugs. It's likely going to be a big game changer in 2-3 years. But you still want your lungs to be in as good shape as possible, can't really fix scarring and damage to my knowledge. Check out the CFF pipeline for info on some treatments in the works. http://www.cff.org/treatments/Pipeline/
I'm going to be 37 next month, I didn't think I'd make it this far when I was his age, but I still lived a pretty full life, followed a career, moved west, etc. I realized recently with all the advances going on, I could probably live way past 40, which I never expect. We're all gonna die, but might as well try and accomplish something and enjoy your time here.

 

[Rickengelage]

Hello lucy13,
I read your message and I'm also a 19 year old guy with cf DeltaF508, and I have had the same feeling/thoughts/attitude as your son now has, I did kind of found my way in it and found a way to fight on and saw the good side of the treatment again, though sometimes I do still fall back into that same attitude, because sometimes I just feel like im alone in it, even though I have got my parents, great friends and a great team in the hospital who I can talk to... I always feel as thought they do not quiet understand me simple because they are not going through it physically, they do not face it every moment of their lifes the way I do, and theres nothing they can do about it, they just don't have cf... Even thought they try to understand and they do all they can, sometimes you just have to talk to someone who goes through the same shit situation and lives the same problems to not feel as though you are alone in this war as much, someone you can connect and relate with more. It helped for me... And in this time perk lucky enough we can communicate through internet very easily, since cf patient are not allowed to have contact face to face...
If you son wants to he can always contact me, I would be happy to help him that way
Also the gym really helped for me, working out made me feel alot better, gave me clear goals that kept me on track and helped me alot mentally and physically also.
Hope I gave you and your son some help with this, feel free to contact me!

Best.

 

[Jennyvb17]

I'm 31 and did the same thing about that age. Finally figured it out a few years later. I think it's just something each of us has to do. It's hard to have cf control your life and harder to come to terms with it.

You are doing good Mom. Try not to let it break you. My mom still bites her tongue when we eat together and she asks if I took my pills. And I sometimes still say of course and then go take them
You are doing the best you can, time to step aside and let him sink or swim while he is still in your house to protect from real harm.

 

[HuntersmomTBM]

Lucy13,
My son is almost 16 he has CF Variant (dx at 14), Tracheobronchomalacia (floppy airway) w/Innominate Artery Compression. He just came out of the hospital -he was dx with major depression disorder. It was awful. He too refused med, but he did his vest because he can feel the difference. Can you get his to see a therapist? We hadn't even realized just how long he was depressed, nor how deep his depression was/is. If anyone here knows of any books, videos they could recommend -it would be helpful. He currently is going to an outpatient therapist but I think some type of chronic medical support would be better. Any ideas would be appreciated.