Help, 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!

 

[AmalynRose]

Hi, Sarah0312.

I am so sorry that you and your family are having to go through this. It must be extremely difficult to watch your nephew decline and not be able to do anything about it. I am glad that you found your way to this community. There are many people here who have gone through rebellious stages in the course of their lives. Many stopped doing treatments and taking care of their bodies for a time. I am hoping they will post in the next few days and share their stories with you and how they felt throughout that time.

My words of advice are to remember that he is probably angry and upset with his situation. Remind him that you all still love him and care about him and want him to choose to live. Without doing his treatments he is basically committing suicide. Make sure he understands what his actions are doing to the family and that they hurt you because you love him. If he wont do it for himself, maybe he will do it for the people who love him.

Best of luck to you and your family. I will keep you all in my prayers!

 

[jmv]

So sorry to hear about this. Have you thought of talking to his girlfriend? Maybe if your nephew's parents know her well enough to have a serious conversation. My guess is she doesn't realize how serious the situation is and if she did, she would probably encourage/make him do his treatments. Best of luck!

 

[Scorp]

I am going to be honest..

I hate CF, and no one knows the psychological issues that goes with the disease. And I am noticing a female with CF has a whole different outlook on life than a male with CF. What do us males have to look forward too ? I have been fired from jobs because, the health insurance company that carried the company was told as long as I was employed by them they was going to increase all the employees insurance rates. The insurance company told my employer that someday I may have to have a lung transplant. Well that was 15 years ago and my Pulminary functions still range in the lower to mid 80's. We can not have a family of our own, because 98% of males with CF are sterile. It took me over 4 years to get S.S.D.I. that is because the SSA does not have a clue about all the aspects of how crippling this disease is, that was after I lost my house I built for my High school sweet heart. The only reason I keep going is because I am going to prove to this disease that I can beat it, and it is not going to get me down.........Scorp

 

[VAmom]

Sarah0312: I'm so sorry to hear about your nephew and what he and your family are going through. I too watch my DS not do his treatments like he should. I also know the heartache it causes me. The CFF has a section about anxiety and depression. They note that teenagers and young adults are most at risk for having symptoms of depression and anxiety compared with younger children (under the age of 12) or adults over the age of 30. It also says that people who are depressed or anxious may have trouble focusing and remembering to do their treatments or may feel hopeless and think that doing their treatments will not help and they may stop doing them. Perhaps if your nephew's family could convince him to be seen and put on an antidepressant this would help him to want to take care of himself. I wish the best for your nephew. I will have him in my prayers.

 

[nocode]

Damn, I know what he's going through all too well. I was diagnosed at 15 and I became a real rebel monster. I was on a mission and that was to destroy myself. It was very difficult to reason with me, but I did continue to do my treatments, because I never minded that, it was a few minutes every day that I could just sit and nebulize stuff while using the computer.
Anyway, back to your problem - I think that his depression is blocking him from being able to fully understand what the reality of his condition is. This is a strong state of denial and that's why you get the feeling that he thinks he is invincible. It's not that he thinks that, it's just that he thinks he has nothing to lose and nothing to live for.
The only thing at the time that kept pulling me back to reality was my family and the unconditional love they always offered me. Still to this day that's what keeps me going.
I think if he agrees to see a therapist and take anti-depressants that could really help him, but he has to be willing to. I think the intervention could maybe help if you guys show a lot of love, and maybe even some tears. It would work with me, and it did.

Best of luck.

 

[LittleLab4CF]

I expect today’s CF post is about to hit so I’ll make this short. Short for me at least. Unless your nephew has made statements to the effect that he feels invincible, this might be a memory of your youth. More than likely your mother told you that you seemed to act as though you were invincible rather than a memory of personal insight from that age.

Right now I am trying to wrap my mind around the idea of being 19, sitting in my doc’s office being told my life may be over soon. I pray that isn’t the case but this news is harsh, deep down lays an unnatural dread. You don’t have to be a rocket scientist to realize there is a complex series of events that must coalesce for this to work. Not to mention we haven’t started growing corrected clones of our lungs so until then it is a lifetime of immunosuppressant drugs. He might be feeling a little too mortal. As hard as it is to contemplate a life too short, it is only too short to the older observer. Death is just as real at five as fifty five when you’re dying.

I am the last person to advise how to live within my limits. I have been testing fate and defying death my whole life and it has served me well. I had a similar situation with my mother some years back. Shortly after I was born she was laid low for an entire year with rheumatic fever. This damaged her heart which along with cigarette smoking met with a severe heart attack when she was 49. For a smoker with a heart condition she was remarkably fit. She was trim, active and happy but she was dying from congestive heart disease from the first heart attack on.

After the heart attack, rehab and quitting smoking, she was healthier than ever. But, she was from a smoking generation, married to a smoker and too soon she was smoking again. During a visit at our non smoking house, she being the exception, I asked her why she started smoking again. It was the pressure and the absolute denial over it killing her. And she said as much. I directly asked her to try to stop again for good. She rather fatalistically asked me why it should matter. Blubber, blubber, I melted and told her I would like to have a mother around as long as possible. She stopped. Maybe it is good to just tell him how much he means to you and use that currency.

LL

 

[samaritan_lungs]

I thought JMV's advice about talking to the gf could be helpful. But something to consider is his possible anxiety about how the gf will take the news. He may be worried that she will break up with him if she finds out and that may be why he is refusing to take his meds?

 

[DmT145]

No talking to the GF or anyone else is a horrible idea. Not only is it subverting his newly found independence, but it's undermining the real reasons he needs to change. If he will not change for himself there is no better reason for him do do so. Sure, you can try to guilt trip him into changing for the benefit of family, and it might work, or it might fail miserably. I would hazard a guess that he's already taken some lectures at home and that's probably why he's at the GF's place, therefore any more manipulation will further estrange him from his family.

My advice? Tell him you love him no matter what and see if you can get him to come back home. Don't threaten, guilt trip, pressure or coerce him into any treatments while at home. He's going to have to learn, perhaps the hard way, how important sticking to treatments are. There's probably nothing that can be done about that.

Good luck

 

[Patti Rowland]

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!

This young man has to have HOPE - make sure he knows about the new gene therapy drugs on the market for some and in clinical trials for others - and the tremendous change they have made for the people who take them. He has a reason to fight to stay healthy and keep his body in the best shape possible so when the opportunity becomes available for him he will have as little permanent damage done as possible. Show him articles about people with CF who run marathons and lead normal lives. My daughter is 19 and gorgeous and just finished her first year of college. She swims laps, takes a full schedule and works a summer job. She was diagnosed at 10. There is a young man who blogs named FatBoy? I believe who writes a great blog. He also went through years of denial and non-compliance and turned it all around. Don't give up and I am praying for this young man. I recently lost my son (to epilepsy) and the pain of this loss is like no other.

 

[Tisha]

Hi Sarah!
I'm sorry you're having this trouble. Obviously one of the biggest enemies of disease is the patient himself, if he doesn't want to do anything about it! Perhaps some "hope" might help? Reading stories of other people who are living and thriving (while taking meds too!). I'm 32 and Faye in Australia is 32 as well, and while we do take proper care of ourselves we do LIVE! Feel free to share my story with him. http://mayni-reikialliance.com/CysticFibrosis.htm