You are way too young, and you have my thoughts and prayers. I think you should live your life to the fullest now, and spend what time you have left as wisely and completely as possible. And heck, you may be around for a while still.

Good luck and hang in there.

Bill

Steve - sorry to hear about your condition... I hope you can make the best of it - I imagine it's hard, very hard... My best wishes for you

Paweł

Steve

Medicine is constantly making leaps in tretaments. I will have you in my prayers and hope for your condition to get better.  I know it's hard to stay and think positive my friend, but things may change for the better. 

Ernie

If I may offer my prayers for you, too, Steve, and I'd like to say, don't give up on hope of a transplant.  I have a friend who had a similar condition, and was able to get a double transplant.  Don't give up, hang on!

I'm so sorry to hear this, I just met you!  I'm in tears now but will pray and give hope to you.  Just by our conversations, I feel your a very strong person.  This I hope will help you overcome this terrible disease.

Toshi

So sorry to hear that Steve. I'll be praying for you.

Sending thoughts and prayers your way. Hang in there.

Steve OMG, so sorry to hear the latest news. You're such a great addition to the site, lets all hope they find something that'll work and get you some relief. Stay strong my friend, good things happen to good people. 

Terry

Steve, man, I'm so sorry to hear this. You've been a tremendous help to me here and in person. Hopefully the insurance will be able to help you out, you might also look into whether or not the drug company has a discout program that could help. I know that for some of my medications I was taking that was an option.

If you need anything, I'm close by and would be willing to help out whenever/however I can.

you've only been here a year? WOW your posts made me think differently.

this is sad news. you are in my prayers.

Dude, Steve, my man, my brother, I had no idea. My prayers are most certainly with you. Like others have said, they are making great progress on many fronts, don't dispair and never give up.

If you need anything at all, ask, I'll always be here to help. I'll PM you my info.

With regard to kits and something to build, brother I got your back. You will NEVER run out of something to build. I'll personally hand deliver kits to you so you always have something to work on. It would honor me to do so.

Hang in there brother.

BK

I'm so sorry to read this Steve. All I can say is live life to the fullest. Medical science has indeed made tremendous gains over the years, so you never know. I hope your insurance will cover that drug. My prayers are with you.

That blows Steve. I too will be praying for you, the doctors, etc. If there is anything I can help you with don't hesistate to ask. 

GM, Pawel, PJ, The Baron, Toshi, Rooster, Black Sheep, Bish, Jibber, Jelliott, Waynec, BrandonK, Bushman, Silentbob, tigerman, Gamera and Mustang.

Thank you so much for your thoughts, best wishes and prayers, in fact, if this disease halts, it will be because of prayer. I will be contacting the "Caring Voice Coalition" who offers financial help, along with one’s insurance, to offset the cost of expensive medications for rare diseases.

You are all my friends and this touches me very deeply. As some of you may know I am a stubborn man and won't let this take me down easily. I will continue with life and do what I enjoy regardless of any upcoming limitations. Who knows, like was said, medicine has and is coming a long way, they may find a way to grow lungs from stem cells before I need a transplant.
I’m not down yet, no annual Modelcrazy Memorial GB’s yet.

Brandon and Joe, I PM'ed you back. Ron, I pray that everything will turn out all right for you as well.

Steve

It's all you dude.

Gosh man, I’m adding you to our evening prayer list for sure.  In my 42 years on this earth I’ve seen a friend or two stop fighting the good fight and succumb to whatever illness or affliction they were struggling with.  Most recently, it was a family member.  But, I’ve also seen friends who adamantly refused to let their affliction influence their outlook of their life and they overcame their affliction.  Two very distinct types of character.  As I reflect on it now, the differences in the two are truly day and night.  By reading your initial post, and also some of the replies you’ve made to my various posts, you my friend do not seem like one whose fate is inevitable as a result of lack of trying.  It sounds like you’re doing exactly what you need to do to help resolve the problem while enjoying the many moments given to you daily.  Keep up the good fight!

Yes, you are way too young for this crap!  Hang in there and stay positive.  Will be sending prayers and healing thoughts your way.

Mike

Dang! Sorry to hear about your medical condition.  Like has said before. Live life to the fullest.  Any day for any of us could be our last. 

You have my family's prayers for a long life and a good one as well.

Prayers and best wishes

Kim

This suks big time and you are way too young for this sh... Never give up as there is always hope. My dad had it some 35 yrs ago, lost 1/3 of his lungs. He was in a hospital coughing like crazy for 2 or 3 months. I don't know what the docs did but the whole thing just stopped. He is still around, age 85. We are thinking of you...

Steve, you are in my thoughts and prayers.  Good luck, and God speed.

John

Damned Steve;

 I think we all should stand back and be thankful for what we have , and what we have experienced .

 Remember there are advances being made every day . Maybe , just Maybe .

 Don't give up hope . I didn't . I have a heart condition that snuck up on me . Hereditary too . But I've made it to 72 . Diagnoses Twenty five years ago .Now have a Defibrillator/Pacemaker . Hasn't gone off since the implant date .Two years ago !

    My prayers and thoughts will always be with you and we will enjoy your presence .Gees man ! Get mean LOL.( mean folks seem to live longer , right ? ) LOL LOL    Tanker - Builder      P.S. Besides you're too young ain't ya ? Besides , You need a shoulder or two ? We all have big ones , man ,  feel free .

Hi Steve,I wish you the best and am influenced by your wonderful attitude.  Hope there is a way to overcome the financial burden,  you don't need that stress.