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View Full Version : Fighting Pulmonary Fibrosis with the help of a vast community


crazyhorse
10-01-2009, 05:34 PM
When I 1st learned about IPF and that I had it, my mind just spun. Over the next few weeks I found that when you learn you're terminal, you spend a great deal of time consoling the people you have told. Eeryone wants so badly to say the right thing to you. They want to say smething so profound that it may lighten the sting of knowing you're in trouble. Fact is, there is nothing.

Another thing I learned is your closest friends tend to separate themselves from you a bit. At 1st, I was pissed because I thought, these arent friends. But when you are close to someone, you are effected more and you dont know what to say or do for that friend to help them and you tend to become paralyzed when you visit them. I have experienced it myself.

The lesson that surprized me the most was the amount of people on the fringe of your circle of friends that reach out to you. People like you guys. You guys have done so much more than you think you have. You added a positive dimension to a situation that has so few positives that without you, my fight would have been perhaps too tough to bear. I mean that with every fiber.

The year of my progression, I had all the tough talks with my wife, friends family, and my son. It was a difficult time for us all but I thought that when the time came I was prepared. I thought that everything needing said had been said. All senarios had been discussed. But one that wasn't discussed was the psycological and emotinal side of recovery.

My surgery didn't go well. I recieved a very bad set of lungs that suffered a perfusion injury during transplant. I developed antibodies that immediately began to reject the lungs. I developed CMV which is a cousin to chicken pox from what I understand. Transplantation is traumatic enough to recover from, but when coupled with the other problems it's too much for the body to fight at one time. Not long after that I contracted bronchitis. Needless to say by the time my feet hit the floor I had been laying in the bed for over 2 months and I was so weak that I could barely lift my head off the bed. I didn't have the strength to turn on my side or comb my hair.

I'm not going to go into the laundry list of bad news the doctors kept coming and telling me day after day. But I will yell you that I know what it is to contemplate giving up. As embarassed as I am to say it, I almost gave up. My will is as strong as anyone reading this. But I now know anyone can be broken given enough to carry. There really is a point where you know your life is not worth living. I have been there.

I now have worked my way back to stability in my mind, and enough stability in my body to look forward to my future. I have regained a handle on my life and am pulling my self up on my own now.

I am here today 1st because I could never give up in the face of my wife and son. I am here secondly because of places like this, and people like you saying keep fighting Dan. Your prayers and efforts were not wasted on me and I'm writing this to let you know that.

Though this was my battle, I couldn't have done it alone. I couldn't have done it without the help of a community that owes me nothing. I couldn't have done it without you.

Thank you for lifting me up when I was at my lowest. You dont know what you did. But you are heros in my book.
Dan




Now, if we can just let the lung transplant thred drop off the page, I can start my new life. You know, I read that whole thread today. It really tells the story. You guys are just awsome. It belongs in the ring of fame. Because it reflects so positively on this group of people, and is some of yout finest work to date.

BlaK-Argentina
10-01-2009, 05:37 PM
:) You, my friend, are an example for us all.

Great to see you're back. ;) Sorry the Chiefs still suck. :)

BlaK-Argentina
10-01-2009, 05:45 PM
Stay strong man, you'll be working on your car before you know it!

cutthemdown
10-01-2009, 05:48 PM
This board could really do some great things with a little organization.

I remember them coming together to build a bike for a disabled kid. Send people to see there parents when they can't afford it. Help out a rival fan when things looked bleak for him.

Great news that you are doing well crazy. Go give that wife of yours a big hug, kiss, and start planning the life you thought you weren't gonna have.

Good times baby!!!!!!! We call it life, and it kicks the crap out of being dead!!!!

crazyhorse
10-01-2009, 05:55 PM
This board could really do some great things with a little organization.

I remember them coming together to build a bike for a disabled kid. Send people to see there parents when they can't afford it. Help out a rival fan when things looked bleak for him.

Great news that you are doing well crazy. Go give that wife of yours a big hug, kiss, and start planning the life you thought you weren't gonna have.

Good times baby!!!!!!! We call it life, and it kicks the crap out of being dead!!!!

Ironically enough, I met Sam. The disabled boy you spoke of. I was inspired and charmed by him at the same time. He was at Childrens hospital for hip surgery while I was there. I also met Falconer and his lovely wife Molly. He married up BTW. Great people. People I could be good friends with.

TDmvp
10-01-2009, 06:12 PM
Ironically enough, I met Sam. The disabled boy you spoke of. I was inspired and charmed by him at the same time. He was at Childrens hospital for hip surgery while I was there. I also met Falconer and his lovely wife Molly. He married up BTW. Great people. People I could be good friends with.

Yea that thread and the help you all gave Sam is what I remember anytime I hate this place during drama ...


When the chips are down most of you guys are money ... I have much respect for a lot of you all even the ones I sometimes clash with who I know in RL are totally great people...
And Crazy you keep fighting man.

Dr. Broncenstein
10-01-2009, 06:29 PM
Dan,

You are a miraculously tough SOB. I hope you get through this, and get home to a life outside of the hospital. Sounds like you're in great hands in the meantime. Keep fighting and get well.

Doc B

Hogan11
10-01-2009, 06:38 PM
Keep on fighting and getting better Craze.....never give up, never let down, no matter what.

Rock Chalk
10-01-2009, 06:42 PM
Dan, you dirty rotten Chief fan, well done. Even if your taste if football teams is absolute crap, you are a strong, courageous man and I applaud your strength and will and determination to keep fighting when all looked lost and the doc's kept giving you bad news.

It's an old cliche, but its true, whatever doesn't kill you makes you stronger and you my friend, are stronger than most.

I removed your thread from the sticky as per your request as well. I am certainly proud of being part of a community that could offer even a strand of hope when there seemed to be none and it makes me proud to be a human being in times like these. Most of us don't know you from Jane, yet our hearts went out to you with compassion and, yes, even love.

Here's to many more football "disagreements" and "debates" good brother. (Now, if you are a Mizzou fan, take everything I said and throw it out the window :) )

ZONA
10-01-2009, 06:46 PM
Don't you ever give up. I know you may want to sometimes but always try to remember there are terminally ill kids out there fighting for their young lives every day and if they can fight, so can you.

Keep on fighting Crazy !!!


http://www.kountrylife.com/gallery/3201.jpg

Killericon
10-01-2009, 06:52 PM
You're the man, Crazy.

gunns
10-01-2009, 06:53 PM
It's so good to hear you feeling better, mentally and physically. I cannot understand what you've been through and I would never think less of you for wanting to give up. Even knowing that I would also never think my prayers were wasted because maybe that's what got you through that. How fortunate that you got to say things to your family we may all regret not saying. I'm thrilled you are here.

Oh, and I'm not sorry the Chiefs still suck.

Meck77
10-01-2009, 06:58 PM
Right on Dan. I wish you well.

cutthemdown
10-01-2009, 07:10 PM
Yea that thread and the help you all gave Sam is what I remember anytime I hate this place during drama ...


When the chips are down most of you guys are money ... I have much respect for a lot of you all even the ones I sometimes clash with who I know in RL are totally great people...
And Crazy you keep fighting man.

Anyone who would let politics decide who his good friends are, or who he should help out, is a bigger fool then I.

Some of my closest, dearest friends are very liberal. Some of them very conservative. What they all have in common is they are decent people and great friends.

I would never let politics get in the way of being a decent person, and helping out a fellow American, or another person stuck on this planet with me.

We are all being hurled through the universe together.

OABB
10-01-2009, 07:26 PM
Anyone who would let politics decide who his good friends are, or who he should help out, is a bigger fool then I.

Some of my closest, dearest friends are very liberal. Some of them very conservative. What they all have in common is they are decent people and great friends.

I would never let politics get in the way of being a decent person, and helping out a fellow American, or another person stuck on this planet with me.

We are all being hurled through the universe together.

unless they voted for W. in 2004 I'm totally with you.

sisterhellfyre
10-01-2009, 07:37 PM
Though this was my battle, I couldn't have done it alone. I couldn't have done it without the help of a community that owes me nothing. I couldn't have done it without you.

Now, if we can just let the lung transplant thred drop off the page, I can start my new life.

Welcome back, Dan. I'm very glad you're still here and still with us, and I'm thankful for the opportunity to have helped you in some way.

Bronx33
10-01-2009, 08:15 PM
Glad things have gone well for you dan it could have not been easy so props to you and your family for going through a very tough time ...





















but sadly the cheaps still suck.

Rock Chalk
10-01-2009, 08:18 PM
unless they voted for W. in 2004 I'm totally with you.

Not only did I vote for W in 2004, but I voted for him in 2000 and voted McCain in 2008 and will vote against the Communist Pig that is running the country right now in 2012.

baja
10-01-2009, 08:29 PM
OK Look let's not beat around the bush here Crazy you need to cheer on a SB winner and you need to do it soon sso that is why you need to become a Broncos fan. End of Story!

Your letter touched my heart Dan. You are a beautiful man. God Bless!

Los Broncos
10-01-2009, 08:35 PM
I feel for you man and I really hope things work out in the end.

Bless you and your family.

Sassy
10-01-2009, 08:48 PM
Keep on fighting Dan!

bronco militia
10-01-2009, 08:51 PM
your welcome, crazy

how's the mustang?

OABB
10-01-2009, 09:02 PM
Crazy,


I'm glad you are feeling better, but I won't be happy until you start smacktalking again....

keep feeling better you bastard!

bronco610
10-01-2009, 09:02 PM
Keep it up Crazy. Glad to hear you've turned a corner.:thumbs: From all the posts I read before we knew you were sick I figured you were too ornery to die. Sorry the team you root for is the chiefs. I guess that franchise would make anyone fighting mad.

Natedogg
10-01-2009, 09:06 PM
We should have done a "Goodbye Lenin-type" charade and made it seem as though the Cheifs weren't the laughing stock of the league. :)

When I hit dark days, I'll remember your courage dan.

BroncoInSkinland
10-02-2009, 04:18 AM
Good to have you back Crazy.

broncswin
10-02-2009, 05:37 AM
Wow Dan, that gave me the chills just reading that...You are a very strong man, and I for one am proud of you for everything you have done for your FAMILY...I know you may think who is this guy, but as a man who has a family as well, I look at your story and understand that we must never give in until the big guy upstairs says it is time...you truely are a great guy!

bronclvr
10-02-2009, 06:10 AM
Dan,

My eyes teared up reading your Post. You are an inspiration to us all-so many times today stories like yours have a tragic ending, and you have shown us all a true strength of will, courage and integrity. My Hat's off to you-:notworthy

Falconer
10-02-2009, 06:18 AM
Dan,
You are a great man. I would first off like to say that I wasn't the only one that married up! LOL You are and should be a great inspiration to all those who have the pleasure of meeting you. I will be praying for you and your family everyday. Be sure to tell your son he has the makings of a great man as well. I am definately hoping to see you all again in the future.

P.S. I have been planning on giving you a call, but I wanted to wait until the Chiefs won a game. Sadly, your call may have to wait for quite awhile. Ha!

baja
10-02-2009, 06:56 AM
Most of us know that there is real power in prayer so I offer this thought, every time you check in to read a new post on Dan's thread take a moment and offer up a prayer for Dan and his family, I know I will be doing that.

Dan you may not know it but you are teaching many of us, for example you have caused me to remember to be grateful for my blessings. Bless you for than and so much more.

oubronco
10-02-2009, 09:47 AM
Most of us know that there is real power in prayer so I offer this thought, every time you check in to read a new post on Dan's thread take a moment and offer up a prayer for Dan and his family, I know I will be doing that.

Dan you may not know it but you are teaching many of us, for example you have caused me to remember to be grateful for my blessings. Bless you for than and so much more.

My Prayers have went out to this man I don't know several times as I've read his threads.........God speed crazy

Orange_Beard
10-02-2009, 10:42 AM
Best wishes to you and your Family.

Blueflame
10-02-2009, 11:50 AM
Thanks for keeping us updated on your progress, Crazy... may things just keep getting better and your strength increase with every passing day.

bfoflcommish
10-02-2009, 12:10 PM
great post CH, hope it all continues to get better for you, and you may as well just switch on over and become a Broncos fan, we'd welcome you.

Merlin
10-02-2009, 12:36 PM
vote against the Communist Pig that is running the country right now in 2012.
But what do you think of Obama? :P


Dan, I have always thought you were one of the best instigators in this forum. No other poster could get people riled like you could. Here is hoping that you get to keep on cheering for the Chiefs until they win the SB...I expect you to have a long and fruitful life Ha!

crawdad
10-02-2009, 12:42 PM
Dan, hang in there man, you are an inspiration and example for others..er well, except for this Chiefs thing that you have. You have my vote, stay strong partner!

crush17
10-02-2009, 12:55 PM
Excellent vibes coming from all angles here folks... what an inspiring story and courageous fight you are leading, Dan.

I'm thrilled to hear you're doing as well as you are, it really makes me take a step back and realize what I have and that I take so much for granted.

Thank you!

rbackfactory80
10-02-2009, 01:27 PM
Great to hear things are looking up Crazy. Keep on fighting and thanks for the lessons that you are teaching us all.

Miss I.
10-02-2009, 01:34 PM
Crazyhorse I wish you well and thank you for bringing some much needed perspective to a board that might need to be reminded now and again there are more important things then determining who the antichrist is (McD or Jay). Your strengh is an inspiration to anyone with a heart and a brain and I admire you for staying strong in the face of adversity. (also I still love your car). Take care man and all my best wishes to you and your family.

Hogan11
11-06-2009, 08:16 AM
Any updates Craze?

Crushaholic
11-06-2009, 08:47 AM
I don't know how I missed this thread. Dan, what can I say? You're an inspiration to everyone who struggles with even the little things in life. As you stated, always keep up the fight for your family...

crazyhorse
11-06-2009, 08:14 PM
Any updates Craze?

Not much to report. I go back to St' Louis for my 6 month evaluation on the 23rd. My rehab is going reeally slow. I'm up to 1.6 mph and staying saturated at 93% O2. I'm lifting small weights and doing more. My workouts are much longer now. In fact, I've gone from 1 hour to 2 since the last update. But I still have to have O2 all the time.

SoCalBronco
11-06-2009, 08:20 PM
Not much to report. I go back to St' Louis for my 6 month evaluation on the 23rd. My rehab is going reeally slow. I'm up to 1.6 mph and staying saturated at 93% O2. I'm lifting small weights and doing more. My workouts are much longer now. In fact, I've gone from 1 hour to 2 since the last update. But I still have to have O2 all the time.

Keep making progress, man. I am encouraged to hear that your workouts are getting longer. Keep it up, man. We're all praying for you. You're doing a great job, Dan.

:strong:

Meck77
11-07-2009, 08:07 AM
Good to hear Crazy. You have a lot more fight in you then your chiefs!

bronco610
11-07-2009, 12:25 PM
Good to hear Crazy. You have a lot more fight in you then your chiefs!

Now thats just mean ;D
So Crazy, does that mean when you are not working out you are able to breath without o2?

Hogan11
11-07-2009, 01:34 PM
Keep making progress, man. I am encouraged to hear that your workouts are getting longer. Keep it up, man. We're all praying for you. You're doing a great job, Dan.

:strong:

+1 Glad to hear of the progress Craze

Sassy
11-07-2009, 03:38 PM
Good to hear Crazy. You have a lot more fight in you then your chiefs!

That's a great thing! :thumbs:

crazyhorse
11-07-2009, 05:18 PM
Now thats just mean ;D
So Crazy, does that mean when you are not working out you are able to breath without o2?

If Im just sitting in the chair, sometimes I can be on what we call room air (no O2).

But if I have to stand, or walk, I have to the oxygen. I have O2 even when I sleep. 2 litres. Thats just how life is right now. There is no time except when sitting where I can go without.

bronco610
11-08-2009, 08:46 AM
If Im just sitting in the chair, sometimes I can be on what we call room air (no O2).

But if I have to stand, or walk, I have to the oxygen. I have O2 even when I sleep. 2 litres. Thats just how life is right now. There is no time except when sitting where I can go without.

That at least is a start. Keep fighting. With your spirit I know you will get there :thumbs:

crazyhorse
12-21-2009, 10:11 PM
Well, just got home from the hospital. I was back at Barnes Jewish hospital for the last 2 weeks. Seems I've been in rejection for the last month or so. Been in treatment for the last 2 weeks in St.Louis. I've lost some lung function. But I think we may have the rejection stopped. I wont know for sure for about a month. They say the treatments take that long to show results. That's the latest.

The good news....made it home in time for Xmas. Feel pretty good considering. My disposition is good and am looking forward to settling back in and getting back to rehab. Hopefully I can work my way back to where I was. But maybe not. In any case, keep your fingers crossed for me.

It's late, I'm tired and just got home. Hope everyone has a Merry Christmas and you get everything you want. I know I did.

Crazy.

Sassy
12-21-2009, 10:13 PM
Thoughts and prayers still coming your way!
Enjoy your Christmas Dan!

broncocalijohn
12-21-2009, 10:13 PM
merry christmas. Nothing like being home for the holidays. Make sure you are nice and comfortable for that jan 3rd game in Denver. You will probably want to get back to the hospital after that one.

crazyhorse
12-21-2009, 10:30 PM
merry christmas. Nothing like being home for the holidays. Make sure you are nice and comfortable for that jan 3rd game in Denver. You will probably want to get back to the hospital after that one.

I think we have already established you place a lot more value on football than I do. Let me go on record and tell you. You wont have to go back several years looking for previous posts. I dont really care much one way or the other if you win the Jan 3 game. In fact, good luck to you my man. The Chiefs stand nothing to gain by winning games at this point anyway. Sure I'd like them to win. But It would mean little at this point in the season. Maybe you should worry more about the Raiders likely knocking you out of the playoffs. If you want to follow someone around trying to pick a smackdown, you should start smaller. I may not troll here anymore. But it dont mean I've forgotten how to slap guys like you around.

I'm going to go out on a limb here a say I doubt seriously I'll be wishing I were back in the hospital.

Merry Christmas back to ya.

Peace.

crazyhorse
12-21-2009, 10:31 PM
Thoughts and prayers still coming your way!
Enjoy your Christmas Dan!

You too.

AboveAverage
12-21-2009, 11:46 PM
I was just about to hit the sack and saw this thread.

Made my night! It's strange how you can find yourself inspired by a total stranger over the internet.

Hope you and your family have a great Christmas.

PatsWin2002
12-23-2009, 11:40 PM
Merry Christmas, Crazyhorse. :)

Hang in there, bud - I haven't forgotten you. I appreciate your updates.

Los Broncos
12-23-2009, 11:45 PM
Merry Christmas Crazy, hang tough.

bronco610
12-24-2009, 08:31 AM
Merry Christmas Crazy !!!!!!

Blueflame
12-24-2009, 11:03 AM
Merry Christmas to you and yours, Crazyhorse

Bronco Yoda
12-25-2009, 05:05 AM
Merry Christmas Crazy!

Keep up the good fight. Enjoy the family.