Going Nuts Here

[Lori1851]

  HI All,
This is how I feel^^^^^^ lol! I am losing it. I have posted before its just been a while. My son is 22 and on dialysis due to FSGS. His name is Dustin. I am his mom and he lives at home with  his dad and I.
OK so here is the ? Dustin is to attted no smoking classes he singed a contract that even if he was still smoking he has to complete his classes. Mind you he is 22 now and I still have to remind him and get on him like he is 12. I love my son dearly dont get me wrong. He wants his transplant what I dont understand is why is it so hard to do the things you know you have to do. Like take meds every day and do this and that.
I know I am not him but dag gone it I would be doing everything in my power to get that transplant. He already has a donor but is waiting 6 mths to get his u know what together lol! He would miss dailysis appts etc. A big no no . He has gotten alot better since on and antidepressant I just dont know how to handle things anymore with him.

Thanks for letting me vent!!!
A loving mom honest!!,
Lori/Indiana

[okarol]

Lori,
I had a doctor tell me "I think it's good for teens to suffer with dialysis until they hate it so much they will do anything to get a transplant." It really upset me so much to hear that!! I wanted so badly for Jenna to get a transplant right away. I don't know, maybe that doctor was right. There's a much greater chance of a young person maintaining their health when they are vested in the outcome. If you can stand it, maybe just give yourself a 3 month break, where you don't ask or nag or question what he's doing. I think these "kids" rebel a little, even after 20, when they think their parents are monitoring everything. Jenna seems to surprise me with being more independent and responsible when I sit on my hands and back off from being her nurse. I know you only want the best for him. But he's gotta want it too. Hopefully the maturity will improve and he can get a transplant later on. I know that sucks, but if you take a little break, maybe you will be able to stand back and relax a little, and tell him you are going to let him take charge. Does that sound crazy? Sorry you have to go through this, I know it's torture. Take care!
    

[goofynina]

I am sure him being so young and desiring to live the life of others his age has a great deal to do with it.  I am just sorry that you are the one that has to be the one to be on him all the time.  I am nearly 40 and believe me, i still do the things i am not supposed to do (and mom lets me know about it too)   Has he been able to kick the nicotine?  That being an addicting habit, is in my opinion going to take more than just classes, has he tried hypnosis?  And remember, he is going to need to want to quit for it to work?  Also, who is he hanging around with?  Have you sat them down and discussed the importance of what he is going through?  Ask them for help, ask them to be your eyes and your ears while Dustin is with them, with a little back up from his friends i think that would be helpful for you too, if you find they are not being honest with you then i think Dustin needs to re-evaluate his friends,  they should be caring enough to understand that this is serious.   I hope you find the support you need (other than here of course) but locally, if not, ship him over here, i'll  straighten him out,  remember, i ran a kids concentration camp,    I mean Day Care, yeah, thats it, I ran a Day Care for 13+ years so i know how to handle kids that dont listen    Good luck to you and please keep us updated on how he and yourself are doing.  Looking forward to hearing more from you. 

[Roxy]

Lori,I agree with Karol.  I'm 21 and had my transplant a few months ago. I've lived on my own since I was 18 and provided for myself, took care of myself, etc. Not because my parents weren't there or anything ( they hated the fact that I moved away), I just have been extremely "independent" most of my life and it was a necessity for me. I think that is a lot of what made me take charge of my own medical health. I made sure to keep myself informed and did whatever the doctors needed for me to get my transplant. My parents were very supportive through everything but it was important for me to take charge of my own health. I think that if Dustin knows it's up to him to take care of himself and he has the control then hopefully he will step up to the plate. In reality, if he doesn't take care of himself now, he won't take care of himself after the transplant. Something has to click within him to take this seriously, until it does all the reminding and nagging in the world really won't help. I think there's something within us around this age actually that we continuously want to prove to our families that we can handle and take care of ourselves. If given the opportunity to prove that to you, he might just surprise you. However, some people take longer than others so you might just have to wait it out. I really hope things get better for you and not so stressful. 

[Rerun]

As much as you want to you can't do it for him.  Let him fall now and pick himself up before he gets a valuable kidney because he may not get another chance. 

[George Jung]

Hi Lori

Please don't take this as criticism, but I think you have to stop being his mom (I know, impossible right?) and just be a friend, someone who will be there when he needs something or when he needs to be saved/helped.  I am only 10yrs older than Dustin, in a similar situation as he is and it is hard for me to imagine how he must feel.  He must think he has been robbed of his life which would make me quite angry.  Anger is an emotion that needs to come out (rebelling) and he may have to hit an all time low in order for him to realize what has happened and turn things around.  Acceptance of a situation such as Dustins doesn't happen quickly, he probably has been in a state of shock, not allowing him to see things from far away, only what is right here and now.

I think if he could talk to others with freedom he would find it helpful.  He may not want to come here (to IHD) due to the possibility that you might interfear.  Souport is important, without question, but so is independence, if he doesn't have anyone to spoon feed him he may wake up and see that this is his fight for HIS life.

There is a new drug out to aide in giving up cigarettes called CHANTIX (I think) and it has a 50% success rate from what I understand.  I know a couple of people personally who have benefited from this aide.  More important than any class or medication is the power of the human mind and spirit, Dustin will ultimately have to want to quit and be willing to work at it.  Any expectation of a drug doing the work for him is an unrealistic expectation.

Lori, as you probably already know there are no rights or wrongs, all we can do is the best we can, the best we know how.  I hope that Dustin continues to improve and that you all find your way as easily as possible.

[Lori1851]

Thank you all for your replies. I appreciate all your input since all of you are going through this. Dustin got a prescription for the new drug so I guess we will see where he goes from there. I know George I need to step back man is that ever the hardest thing for a parent. I have always been so involved in his health its really hard to let go but I will try to . Well I am off to work to feed the kids at school.
Thanks again everyone!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Lori/Indiana

[EMMA]

Hello Lori...

My heart goes out to you as I can hear the desparation in your voice.  I agree with everyone.  Being told  that part of your body no longer does its job and you need to stick to a  very regimented program is a difficult pill to swallow...esp for a 22 year old boy.  Most  people cant even stick to a proper exercise program...so the demands on your son are heavy.  His age is significant as at this age you spread your wings and fly.  He cant do that without the help of a machine.  He is probalby in denial and may not appreciate the ramifications of his actions,.  I remember being that age and thinking nothing could ever harm me...I felt immortal.  I think your son does too.  I know its hard, but try to back off a little.  Sometimes falling is the only way to learn.  He knows smoking is not good.  He knows what he should be doing.  He is choosing to ignore this right now.  It will unfortunately not pay off for him.  Hopefully, he may have a little scare and that may prod him forward.

Emma

[Sluff]

I think these "kids" rebel a little, even after 20, when they think their parents are monitoring everything. Jenna seems to surprise me with being more independent and responsible when I sit on my hands and back off from being her nurse. I know you only want the best for him. But he's gotta want it too. Hopefully the maturity will improve and he can get a transplant later on. I know that sucks, but if you take a little break, maybe you will be able to stand back and relax a little, and tell him you are going to let him take charge.

Hi Lori

Please don't take this as criticism, but I think you have to stop being his mom  and just be a friend, someone who will be there when he needs something or when he needs to be saved/helped.    Anger is an emotion that needs to come out (rebelling) and he may have to hit an all time low in order for him to realize what has happened and turn things around.  Acceptance of a situation such as Dustins doesn't happen quickly.
I think if he could talk to others with freedom he would find it helpful. 
 Dustin will ultimately have to want to quit and be willing to work at it.  Any expectation of a drug doing the work for him is an unrealistic expectation.
 There are no rights or wrongs, all we can do is the best we can, the best we know how.  I hope that Dustin continues to improve and that you all find your way as easily as possible.

Everyone has already posted how I feel, I hope Dustin accepts responsibility to save his chances for a transplant.

[keefer51]

Lori, I was told at 48 by my new neph. " Have Keith stay on dialysis for a couple of years and maybe he won't lose the next one." This was told to me from my transplant dr. It didn't surprise me at all. The dr's i have are lacking in compassion and understanding. The funny thing is the transplant dr. isn't around anymore he moved. It's hard to deal with this crap when you are young. Heck, it's hard at any age. I think in time he will make his own decisions. I hope you have patients.