a lil setback

[Lori1851]

Hello friends,
Well, got a call from transplant yday. Dustin will have to wait another 6 mths for transplant. He is not ready yet mentally. He HAS to quit smoking, attend all dialysis treatments ( had missed 3 due to illness) and take his meds as prescribed. Yeah, I am sad but he has to understand I can't do this for him . Yes I am a nosey protective mom lol. Dustin had to see a shrink and do some kind of test. Well they looked at the whole picture and are hoping this will give him a light bulb moment. He is 21 and I know takes things for granted. Time to growup I know. And alot for all of you to digest when you are ill.
Talk soon.
Lori/ Indiana mom to Dustin 21 FSGS/ESRF

[MyssAnne]

Oh Lori. That is so hard for you. Both to see this taking place and to step back and let Dustin DO it. You are right.
I have a 19 year old who is finding out how the real world is. Not as Dustin is, though. I so hope and pray he
realizes what he has to do to get that transplant as quickly as possible.

[George Jung]

Hi Lori.  I hope Dustin finds the motovation to move in the right direction.  Is he doing anything for fun these days?  I would still like to talk cars and stuff with him if he's interested.  I am just starting to pursue a transplant myself.  There were offers from family/friends to be be tested for me when the shit hit the fan but I was not even close to being mentally ready.  Now, 8 months since then, I feel as if I am ready and I am able to do what it takes.  I sent out an e-mail with donor information and a message that I am in the beginning stages of being tested to let everyone know.  Things always have to be on my terms for some reason.  For the past 8 months everyone wondered what I was waiting for.  A transplant is a form of treatment that one has to decide on weather or not they want to pursue it but people act like it is a given.  Why this and why that is what I heard for some time and unless it is you that is the one confroting the matter it seems like no one gets it.  6 months is nothing in the big scheme of things, some days it might seem like forever but then before you realize it 5 months will have pasted.  Just don't focus on what you can't change and be positive about the things you and Dustin can change.  I have an employee at that has used a new drug to help him quit smoking and he raved about it.  I have heard of excellent results.  There are no magic pills though, Dustin has to want, in his mind, to give it up.  He has to realize that it means more to live than it does to light up.  I also think it is important to have something else enjoyable to replace the habit and consume the time.  Wishing Dustin and you the very best of luck (even though luck doesn't have much to do with it) and health.  Maybe you could mention this site to him again and the fact there are others here that would enjoy and benefit  from talking with him.  Take good care.

[Lori1851]

Thank you for the comments. Just got off the phone with the social worker at transplant. They encourage him to quit smoking he can either quit on his own and have blood test done random to check him or take smoking classes and if he is still  smoking when transplant is on they will still do his transplant. Dustin has no heart or lung problems. Geesh, I hate this. I know what you mean when ppl ask when is the transplant blah blah blah. I get tired of explaining to them its not like here take this kidney and you will be in great shape. They have NO concept to what it involves. I read up on everything. I feel like knowing what it involves is knowledge. They do not understand this is a form of treatment not a cure!!
Well its a beautiful day the Lord has made today and I need some much needed time to myself. Think I will go set outside.
Have a great day! And thank you for listening. 
Lori/Indiana mom to Dustin FSGS ESRF

[okarol]

Hi Lori,
I hope the wait doesn't go too slowly and I know it must be so frustrating. But hopefully over the next few months Dustin
will be motivated and in the right place physically and emotionally to prepare for a transplant. You have done so much for
him and as a mom you just want to make everything better! Hang in there! 

Karol

[keefer51]

Lori, i had a transplant around thirteen years ago and the only set back we [my brother and i] had was that the transplant team and docs. felt it necessary for me to be on dialysis for a longer period of time. They thought i would really want the kidney once i found out how bad dialysis was. Since they have started this crusade against smoking they have been able to use it to there advantage. I smoke and have smoked since i was 13. I smoked before during and after my transplant. They enjoy the fact that they can dangle that carrot over your head. If they really thought it would hurt the transplant they wouldn't even discuss it with you. I am on the list now and still smoke about a half pack a day. They like to make you believe that there is a miracle cure for dialysis and kidney disease. I have listened to all the hype about quiting from the few newbie doctors. They even try and convince me about the second hand smoke theory. Now i can't sit here and say that smoking is good for you. But i would worry more about how mentally he is able to get a transplant.

[Sluff]

Don't worry Lori it will happen, unfortunately not until Dustin realizes the seriousness of his actions. Try not to worry God has a plan.  Hang in there!!