Advice please!

[Sarah0312]

Hello all,
I am desperately in need of advice for my 18 year old nephew and his family.
He was diagnosed only two and a half years ago, so he hasn't really followed the usual path for CF. Since then, he has been in almost constant decline. He has had numerous hospitalizations, all of which a result of neglecting his treatments. It seems that he sees himself as invincible, and because of this he doesn't do his treatments, or does them sporadically.
One of the biggest issues right now is that he is 18, so he cannot be forced to be hospitalized or to do his treatments. He moved out and is living with his girlfriend. He dropped out of college. It just seems like he is giving up.
At his visit with his doctor today he was told that his numbers are so bad that he is a candidate for the transplant list - but that because he doesn't do his treatments, they wouldn't give him the transplant. My sister-in-law is devastated, but is at a total loss about what to do.


We are all so worried. The family is planning an intervention for this weekend.


So, my question: Does anyone have any advice? Or anything that you (as someone who has experience with CF (in any capacity)) think that he should know? Or anything at all???? I would greatly appreciate any guidance.


Thank you so much!

 

[jshet]

Has he had any therapy since receiving a diagnoisis? Maybe a chance to sit down with someone who doesn't have a dog in this fight is what he needs. He may need to say things he has not felt comfortable saying up o this point with his family. He may also need to have someone new to form a bond with to finally be able to accept that he has cf.

his girlfriend may be able to have some sort of influence over him to start taking this seriously. Is se aware how important it is to be proactive.

It sounds like he has never accepted his diagnoisis and I feel terribly for him. I will keep you all in my prayers. Good luck

 

[nmw0615]

I agree with jshet. I was diagnosed at 8 weeks old, so I grew up knowing I had the disease. However, when I was 18 I had a meltdown and just stopped taking care of myself. Nothing my family, friends, or doctors could get through to me. Eventually, I started seeing a therapist. Her outside point of view helped me see what I was doing. It definitely wasn't an immediate change. I didn't go from doing nothing to doing everything overnight. But I never felt okay telling my family and friends how I felt about the disease. I had always been a positive, sunny person and they had always told me how much they admired and ooked up to me for how I handled my disease. I didn't want to tell them how I felt and make them think less of me.

Talking to the therapist gave me someone to tell those things to. I could tell her that I had already decided what I wanted to be done with my body when I died. I could tell her how about the days when all I wanted to do was curl up in a ball and disappear. Therapy was the best choice I've ever made best it helped me get control of myself again. If possible, try getting him to talk to someone at least once. It may turn out it's not the thing for him, but I still think it is a great place to start trying to find his way again.

 

[Enzo2311]

Maybe he's suffering from depression, or honestly, he feels he doesn't have the time. I too have been neglecting my treatments and I did in the past.


If you feel it's because he's invincible, you need to tell him the cold hard truth. Shock him and scare him, tell his girlfriend to encourage him. Do everything possible.

the good part at being young is his lung percentage could go from 30% to 50% within a few months of exercise, treatments, and extra healthy calories.

A few years ago, my drs told me my lung percentage went from 105% to 92% within 3-4 years (I never really did treatments and I didn't go to the cf clinic for that long, so I went when I was like, 11 years old, and then again when I was 14-15 years old, so between that time I never went to the cf clinic) and they said that there was minor scarring, they also said it would be almost impossible to get back up to 105%, so I worked my butt off doing treatments a bunch and doing P90X a few times a week (I did treatments like 5-6 days a week). A few months later, I went back to the cf clinic and they told me I scored 107%! I was ecstatic! Then, a few months later it rose to like 113%!

So tell him that it's not too late, and he can still do a lot of good if he starts now. It might even help if he talked to parents who lost their kids with CF and what they wish their kids should've done. I almost guarantee any parent who lost their kid to CF would do that to save another kid from losing his life to CF.

tell him not to take his life for granted. At the end, you cant force him to change, he's the only one who can change.