need help/Adult son with CF

[anonymous]

I am the mother of an 18 year old with CF. He was diagnosed at 4 weeks old. CF has been a constant battle for him with the adding of something new all the time. Currently he battles with the every day ups and downs of CF along with CFRD, Cepacia, Chronic sinus problems. Anyway, this last year was a tough one for him. This is when he first cultured Cepacia. He felt like his life changed completely. In many ways it did. He was either in the hospital or on Home Iv's more often than not. Finding an antibiotic combination that worked was challenging.
Since June he has held his own and has had some good moments and hasn't needed IV's for 4 months.
His concern for his health is challenging. He seems to only do what he needs to do to feel better for the moment. He will do his breathing treatments but rarely will do his airway clearnace. Only occasionally will he take his medicationor enzymes. He discovered if he holds his breath he can control his coughing.
Day after day I watch him. He stays in his room and sleeps almost all day long. It is like he has just decided he is sick and there is nothing he can do about it. I am so afraid that it will one day all catch up with him. I have talked to him about it many times and he has gotten to the point that he just tells me what I want to hear.
I finally did get him convinced to see a psychologist(of his doctor did). Although it doesn't seem to make any difference in getting him to be more active with his health
Michelle

 

[anonymous]

Hellow my name is samell and i am doing an project on cystic fibrosis and i just wanted to say put his situation within a normal childs shoes make him happy and incourage him sometimes. go in his room with a positive attitude and say son theres a game today at school would you like to get up and get out the house. or aproach him in a different way by leaving every weekend and when he asks where your going say your going to have fun and offer him to join you.I also am an 18 year old and we are busy bodys and try my aproach long enough and he will eventually give in. Just do thing he wouldnt exspect from a mother like invite some of his friends over to socialize or to play on his p2 believe me he wont hold out for long but he will get around to getting out more by his self without your worry.


If i was in his shoes i wouldnt exspect myself to be different from anybody else enjoy your life as much as possible make it worth living to the fullest exstent.

well! I enjoyed giving words of incouragement and i hope you take my word for it.

your new friend Samell Avis Arnold

 

[RadChevy]

Michelle,
I am glad you are in touch with a pychologist... if not only for him but for you as well.
It seems he has all the symptoms of clinical depression and should be on some medication. Depression is not surprising to have with CF and your son certainly has reason to be depressed.

Do you know what his lung functions are? His FEV1? With Cepacia of course this is a great concern as it declines faster.

Do you know any other CFers his age that he can talk with? I know in person might not be allowed, but over the phone, email, etc. There are many young men with Cepacia. What about lung transplant?

Those who get new lungs get a new chance at life and take advantage.Their zeal for life is amazing and what we can do after new lungs is something to witness. The transplant games which are held every 2 years is a great place to see that.

Let me know if I can be of any help.
Joanne Schum
luckylungsforjo@aol.com'


Joanne M. Schum

Cystic Fibrosis
Bi-lateral Lung Transplant Recipient
September 12, 1997
University of North Carolina Hospitals Chapel Hill
Residence: Upstate New York
email: luckylungsforjo@aol.com
Manager of: Transplant Support - Lung, Heart/Lung, Heart
http://groups.msn.com/TransplantSupportLungHeartLungHeart

"Taking Flight - Inspirational Stories of Lung Transplantation"
Compiled by Joanne Schum
Authored by lung recipients around the world
http://www.trafford.com/robots/02-0497.html
http://www.trafford.com/

Lungs for Life Foundation
http://www.lungsforlife.org
Joanne's Bracelet, Transplant Awareness Bracelet, CF Awareness Bracelet
http://www.lungsforlife.org/other_ways/lfl_store.htm

 

[Diane]

Hi Michele,
I wonder if you had written a post once before about your son, not too long ago. I kind of remeber reading about a teen your sons age who had cepacia, and he seemed very depressed at the time because his numbers had been declining. O well, even if you arent the one i am thinking about, it sounds like your son is very fearful and depressed, almost like he has decided to give up and give in to his illness. Its good that he got a small break from iv's, and if he takes better care of himself he may get an even longer break from them. I've had b.cepacia 7 1/2 years now and it sure is a challenge like you had said. I read something on the internet about cepacia and it said that a combination of 3 oral antibiotics is more benefifial than 2 because when there are 3 , it makes it harder for the bacteria to build a resistance to any in the combination.
I have been using 3 at a time, for alomst a year now and it has helped a lot. I also started glutathione a year and a half ago and that has made an incredible difference in my energy level and how i feel. With cepacia you tend to feel tired to the extreme a lot, and just like you dont have the energy to do anything or go anywhere. When i started taking the gsh ( glutahione) orally only, i started to have energy again, and was able to start getting active again. You didnt mention what his fev1 was....or how long has he had cepacia?
To some degree it almost sounds like he is trying to be a normal teenager by keeping to himself, and avoiding doing whats good for him. Unfortunately he does have cf and with cepacia he needs to start taking care fo himself NOW, if he wants to have a future..... cf is scary all by itself,,,, cf with b.cepacia makes you feel you have lost all control of the situation. It is scary and i certainly understand his desire to just sit back and say the heck with it. I did it too, but he will realize he has to make a move and the sooner the better.
I want to help ....... my email is.... jinxnick@aol.com
~Diane 39 / cf / diabetes / b.cepacia

 

[anonymous]

Diane-
Yes, we are the one of the same. The whole business of Cepacia for Cory has been very difficult for him to handle. When it was just CF he felt like he could relate to other teenagers with CF. Dealing with Cepacia he feels differently. He has backed away from that support.
I definately see his response of just wanting to be a "normal" teenager. He tries to "bargin" with his doctor in not going on Iv's. He does use the 3 antibiotic combination. His resistance level is high but we have had some luck with the 3 antibiotic(usually 2 IV and 1 inhaled(azactam).
I feel so bad for him and yet at the same time I am frustrated. I have tried so many ways to help him. To encourage him and currently, I feel like this is completely out of my hands

 

[anonymous]

Hey, just read your post and I see a lot of my "OLD" self in your boy. I am 24 and also have Cepacia. I also have more "tag along" stuff that comes with CF. Depression is a killer. I was so depressed at one point, I would only leave the bed to use the restroom and drink water. Now don't get me wrong, I am no SUPER HAPPY bouncing around person, but I am better. I would love to talk to you or your son if you want. There are just somethings that nobody else feels or goes through. Even if he doesn't want to talk, it would help if he just listened.

What I told my mother is whatever it took to get her off my case for the time being. When she saw this and pushed harder, I withdrew more. It is a double-edged sword. You think you are helping and you aren't or you think you are letting him down and you aren't. It is a tricky situation and I don't claim to have the answers but I do believe I can help or at least tell you some stuff to help. Anyway, you can e-mail me if you like.

tybaum21@aol.com

Eric 24 w/CF