Emotional problem/depression

anonymous

New member
I have a 20 year old son that has done really well with CF...until he went away to college. he chose to deny his disease by ignring treatments. He was hospitalized twice in 2 years, never having been hospitalized prior to this time. He was also diagnosed with the pseudomonos germ, and for him, he has decided this is the end. What is the point. I don't understand this mentality because I have always felt optimism was a critical part of prevention. I have lost my control. Although he is now home attending college, I see the depression. there are no support groups and the doctors don't seem to understand the problem he is in poly sci and can come off as very together...and he is...but not really. I sound as confused as he. I am not sure what to do. I feel he needs help dealing with all the issues that come with CF and/or any such disease. Is this normal? What should I do? he is now deflated due to the prospect of being infertile...who would want him? That is his attitude and no matter what I say, it doesn't get through. He does not do his therapy as he should. It is always a fight every night. If he did his therapy the doctor said he would be back to where he was prior to starting school although he probably will never regain all of his function. So why doesn't he do it? It is suicidal in my world. I don't know what to do. Does anyone out there know what I'm talking about? I don't want to wait and watch him deteriorate and then he 'realizes' he should do his therapy. Should he see someone? What kind of person would be best for this? I need help, but more importantly, my son needs help.
Babette
 

Emily65Roses

New member
Okay, a few things. For one, I think it's normal. A lot of us go through periods like that. I did. I still have my moments, but overall I'm okay. And I imagine your son will be too at somepoint. For two, be sure to tell him pseudomonas is not the end of the world. Literally. It used to be more of a death sentence, years ago (the 80s and earlier). As for the present, almost ALL CFers get pseudomonas at some point or another. Many many of us live with it for *years*. There are far worse bugs out there than pseudomonas. For instance, I have MRSA. That's supposed to be a bad one (cepacia being the worst, in popular opinion), but I got it 5 years ago. I got it 5 years ago, and 2-3 different pseudomonas. That's right, I've got a few of them. And sure, I've lost lung function, but that happens with time no matter what. Either way, I'm still up and about. I go to school, I'm not on oxygen, or a transplant list yet. I'm still doing pretty damn well if I do say so myself. 70% lung function most of the time. And that's with MRSA, staph, and 2-3 pseudomonases. Pass that along to your son if you like.

As for being infertile. If he can ever afford IVF, he can still have a biological child with his future wife. CF men have sperm, it just can't get out. So basically as long as he can afford the medical procedure to go in and get the sperm, his wife can still get pregnant and bear his biological child. Even if you can't afford IVF, most people aren't going to blow him off because of that. There are options out there for all sorts of couples who can't have kids of their own. We all worry about "I have CF, I'm dying, who's going to want me?" But you'd be surprised how easily it comes for most of us. As easy as anyone else, in most cases. You can't control who you fall for. So if someone starts to fall in love with your son and then finds out he's sick, there are very few people who would stop there and say "SEE YA!" and run away. Most just accept it and stay.

Talking to a therapist might help a lot. But don't send him to just any therapist because then he's liable to get the "oh well don't worry about the future, anyone can get hit by a bus blah blah" crap. Which is true, but not helpful in a case like CF. We are entitled to worry about that type of stuff. If you're looking for a therapist for him, I'd say start with a social worker at your CF center. They know enough, given that they work specifically with ill kids, to not brush off your son's concerns like many therapists would.

Also, believe it or not, something as simple as talking to another CFer can be a big help. It's made a lot of difference for a lot of us. Me included. It helps sooo much to be able to just talk and relate to someone who really <u>understands</u> firsthand what you're going through. If he's not too stubborn or against it, I suggest you have your son come on this website. If he's not up for that, he can contact me alone. Email: Emily65Roses@yahoo.com My AIM: Emily65Roses. I really would love to talk to him. I can relate to all of the stuff he's going through. Even the infertile thing. I don't have the sperm problem, being that I'm a girl. Hah. But I had a hysterectomy (for a medical problem unrelated to the CF) when I was 18, so I am also stuck completely unable to naturally have kids. I would absolutely love to talk to him. If he's up for it, send him my way.
 

izemmom

New member
Sorry Babette - this is actually for the last poster, Emily65Roses. Emily, every time I read a post from you I smile thinking of my little Emily, 9 weeks with cf. I hope she grows into a young woman as poised and articulate as you. When I get really down about her future and prognosis I serioulsy do reming myself of you. Just wanted you to know!

Tami

Emily 9 weeks w/cf
Isabelle 3 years no cf
 

Allie

New member
I was always one of those people who lived my life as cautiously as possible. I had the entire thing panned out for myself, or really, what my mother had planned for me. But I lived by safety and stability. I would tip my hat to those who married someone whose life expectancy was shortened, but I thought I could never do it myself.

Then, I fell in love. And it was right, and it was perfect, and just like all the storybooks say. And all of a sudden what was going to happen in the future became a footnote, because i was so happy in the present. I had never felt true love before I found him, and his CF didn't stop me from indulging in that kind of love. As I once tried to explain it, it was like the difference between suicide and dying normally. I had the choice of cutting myself off from Ry, or letting life eventually take him away. I chose not to damn myself, and gambled on joy for as long as possible. And most people of love and worth will decide the same.

as far as the child thing, it's a rare, and in my opinion selfish person, that would leave someone just because they want their biological kids. That's sick to me. I don't understand it, and I hope he won;'t encounter it.

I think all Cfers have times when they get depressed. Ry used to comment about how he felt liek the was holding up a dam, and he could only hold it off for so long. Seeing someone couldn't hurt. It's a tough thing to be going through, being so young and coping with the idea of your own mortality.

I believe your son will find someone, I truly do. and tell him it's not unusual at all for Cfers to fall in love and get married, there's enough proof of that here. If you ever want, you can reach me via my personal info in my profile.
 

Emily65Roses

New member
Tami - I'm glad reading me makes you think of your Emily and makes you smile. And I appreciate the compliments.. but watch it or you'll inflate my head!

Emily65Roses: I'm not a hat person. Hah.
Allie: good thing, what with your head swelled all the time

Ahahahahaa! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 

anonymous

New member
I m new to this so bear with me. I am a 39 year young CF individual- I am also a father to my 2 1/2 year old daughter thanks to IVF. I had never been hopsitalized before my 21 st birthday- good healthy activity kept CF at bay. I too went through all the wonderings about my life to come dealing w/ CF. If your son is that healthy there is no reason why he can't rebound and get out there and enjoy life. It is too bad that we cannot get together anymore (CFers) it really opened my eyes to see what others were dealing with compared to my own life. I volunteered my time at some CF camps and was amazed at the life the little ones had -living every moment without hesitation. The older individuals took time to help to younger ones out with everything-knowing how important is is to have a posistive outlook on life, not to mention the comaradare we had as adults . Your son sounds like he had allot going for him health wise. I wish I could go back and do things a bit different. There is someone out there, sure there will be those who will run=it happens to all of us. Persistance is the name of the game. I have been married ten years and my wife will tell you she doen't regret is a bit. Most people I hike with still can't keep up with me and it makes me want to try even harder to stay that much more ahead of the game. It really all boils down to how bad he really wants a life and pure happiness. He will have to write down just what it is he really expects out of this life and then get after it. I wish there were more I could do to help you. show him what there is out there. Show your love as much as possible and what his qualities are. You never know some sweet little person will come into his life and life has a whole new meaning.
 

lesley

New member
Dear anonymous of 7th january
it really made me feel better reading your mail and the other responses. I have an 18 year old son with CF who has just been hospitalized for the first time for IVs to combat a persistent staph aureus infection. It was really traumatic for all the family, and now although he is better physically he is so miserable and lackadaisical and just plain sad I don't know how to make him feel better. He attends college but he does the bare minimum, as if, as you say, his attitude is "what's the point?" I hate seeing him so down - he was such a happy little boy - and it's hard for me to stay positive and cheerful for him when he's like this. It helps to know other people are going through the same problems, and when I read Emily65Roses mail it made me laugh for the first time in days. Friends and family are very supportive but they have no idea how miserable it is for a mum to watch all this happening. And I must also mention the big taboo - that I feel so guilty about it all, such a failure.
 

JennifersHope

New member
I agree Emily.. your posts always makes me smile.. You have more wisdom than you know and you are very much an asset to this group....

Jennifer
 
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