As some of you may know, I have “Idiopathic Pulmonary Fibrosis”, a lung disease of which they have no clue how it’s contracted, non-curable, often hereditary and always deadly. If you read the prognosis on it they say you have 3-5 years from diagnosis to death, excluding a full lung transplant, which has a 75% survival rate for the first year and goes down to 50% after 5 years. Lung transplants rarely last more than 10 years before the body rejects them and death is the result. Well I was diagnosed in 2010 and my lung function has been declining slowly since (My mother had it as well and has since passed). The symptoms are shortness of breath because of lessened oxygen transfer due to scaring and coughing…a lot of coughing. No medication can stop the coughing, I’m so tired of it. Eventually the heart just quits because it gets tired of trying to push blood through the lungs to no avail.
Well jump to yesterday. I went in for my bi annual breathing test and a little chat with the Pulmonologist to see where I am now. A year ago I was at 53% lung function, 6 mo. ago I was at 52%, and yesterday I was at 42%, a huge decline. The doc said there is a new drug that slows the progression of the scaring…but is very expensive. He is checking on whether my insurance will cover it, but even after that I would be looking at a huge expense, and it would just delay the inevitable. Eventually, after I am on oxygen (which I am not at this time) I will be looking at a full lung transplant, sounds like fun. This is one of the reasons I am building my stash, so I can have kits to work on when I can’t afford them anymore.
Anyway, I’m just a little bummed right now (but will pull out of it like I always do) and needed to cry on someone’s shoulder. Thanks for reading
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.
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.
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.
Really sorry to hear that Steve. You have been a great member of the forum since you joined, its hard to believe its only been a year. Our thoughts and best wishes are with you.
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.
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.
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.
Steve, you are too young for this crap. I am sorry to hear about your condition. I go in tomorrow for CT scan on my chest. They found spots on x-rays that could be related to mining. Ron W.
Steve, I’m very sorry to hear this. I’ll be adding my own thoughts and prayers to everyone else’s, hoping that the insurance company will help you out and that you can beat any odds.
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.
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.
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!
