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Cystic Fibrosis
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sad sally
New Member
Joined : Dec 2005
Posts : 1
Posted 1/15/2006 3:13 PM (GMT -8)
HI MY NAME IS STACEY IM 22YR OLD BUT MY BEST FREIND HAS CYSTIC FIBROSIS AND HE IS SICK HE HAS ALREADY HAD A LUNG AND KIDNEY TRANSPLANT HE IS 36YR OLD BUT WHAT I WANTED TO KNOW WAS WHAT AGE DO PPL WITH CF LIVE IVE BEEN TOLD HE WILL ONLY LIVE TILL HE IS 40 YR OLD WE ARE SO CLOSE I JUST CANT BEAR THE THOUGHT OF LOSING HIM AND ALSO IS THERE ANY WAY YOU CAN CATCH CF ANYWAY WHAT SHOULD I DO OVER THE LAST 3 MONTHS WE HAVE BEEN SPENDING ALOT OF TIME WITH EACH OTHER AND ALL MY FREINDS ARE TELLING ME I HAVE TO STAY AWAY FROM HIM AND NOT GET TOO CLOSE COZ WHEN IT COMES TIME FOR HIM TO GO THEY SAID IT WILL BE ALOT EASIER ON ME SHOULD I BREAK FREINDSHIP WITH HIM COZ THERE TELLING ME TOO I NEED HELP ANYBODY I WOULD BE APPRECIATED IF SOMEONE COULD HELP THANKYOU
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Burn
Regular Member
Joined : Nov 2005
Posts : 28
Posted 1/15/2006 3:40 PM (GMT -8)
NO! There is no way you can catch CF you are born with it. And tell your friend to get lost. People live longer these days. I know a couple of people who are in there late 40's and there are people who live to there 80's Think how you would feel if he said to you, oh I'm not going to be your "friend because you won't live long" have a heart. 40 is just the general age. It doesn't mean that as soon as you turn 40 your going to die.

I think you’re "friends have a cold heart. nono
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Jane Doe
New Member
Joined : Jan 2006
Posts : 4
Posted 1/17/2006 5:16 PM (GMT -8)

Sally I have to tell you, your note really upset me!  First of all , if this guy is your best friend, haven't you taken any time to find out more about CF?  Of course you can't catch it!

Secondly, and more importantly, are you really thinking of ditching him because he might die?  I have CF and I have been ditched because people were afraid to get close to me.  They were afraid of how awful it would be if they lost me.  Well, let me tell you as someone on the other end of it...It's horrible!  None of us know when we are going to die but shouldn't we all being taking advantage of the time we have now and live to the fullest?  If this guy is truly your best friend don't you want to make the most of the time that you have together?  Perhaps you don't want to ditch him but your friends got the idea in your head.  Well, I hope you never get sick because it sounds like your friends will ditch you!

It seems to me you need to spend more time questioning your relationship with these other "friends" than thinking about ditching your best friend who probably really needs you right now!   sad

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Nicole18CF
New Member
Joined : Dec 2005
Posts : 12
Posted 1/18/2006 4:31 PM (GMT -8)
I feel sorry for your friend that has CF because if you are even thinking about ditching him as a friend then I would hate to have you as a friend!! You dont deserve to have him as a friend because you are so cold hearted. So keep your other friends because you are just like them!

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faithful83
Regular Member
Joined : Jan 2006
Posts : 47
Posted 1/19/2006 11:09 PM (GMT -8)

Well first of all, i would think any one who has cf would be offended by this post. Dont you think we think about dying all the time? i have just recently been dx with cf i watch my lil sis die from it..we all have one life..does your friend judge u on how long your gonna live or what health problems you have? how is that right? omg that is so unbelievable. i am having trouble admitting i have cf and adjusting to this whole new life and everyday i wonder how long am i gonna live..am i gonna get to see my son graduate or not..i cant even believe someone would have the guts to write a letter like that here..what if your friend could see the future and lets say, he sees you getting hit by a car in about 4 years so he breaks the friendship, wouldnt u be asking him what kind of friend would he be? how can someone who is thinking about ditching their"friend" b/c of medical reasons be classified as a true friend? and my dad wonders why i dont tell my friends. im not stupid. yall r all alike..but yet u r sooooo healthy..i would never ditch ne one no matter what the circumastances are. just remember one thing b4 u make the stupidest mistake of your life..he can live longer than u..u never know (being healthy) when your time is to go. as well remember a true friend is always there no matter what..if you r really a friend to him maybe u need to think about the reason u were or are gonna dump him..is a chance of dying worth it? we all healthy or not cf or not have a chance of dying in our sleep..

make the right choice and be a real friend

until next time

faithful

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creaner
New Member
Joined : Jan 2006
Posts : 2
Posted 1/21/2006 3:07 PM (GMT -8)
dont do it babe he needs u,i got cf and i`m 26.over the years its been hard working out who 2 trust and he trusts u try 2 b there 4 him. nono
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Twinstride
Regular Member
Joined : Sep 2005
Posts : 318
Posted 1/21/2006 5:50 PM (GMT -8)

Everyone,

Since Stacy's post has no periods to seperate the interpretation of her post here and all caps, it can easily be misunderstood.  Please, be a little patient with her.  She is not wanting to loose her friend, she is very scared of what OTHER people are informing her of and the outcome of her friend.  Perhaps thats why she is here on Healing Well. 

My guess is this, she will stay to the very end and find out how to deal with what a CF person goes thru now rather than later. 

Thanks!

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snohare
Veteran Member
Joined : Oct 2004
Posts : 2088
Posted 1/26/2006 5:28 PM (GMT -8)
Stacey, I don't have CF, don't know anyone with it (I was just getting myself educated when I saw this), so I'm coming at this from a different direction. I think of what it was like to watch a friend die, dwindling away to a mere shadow of his former vital self. yeah

You can't have light without shadows.

Sometimes, the shadows make the light seem all the brighter, and show us things we wouldn't otherwise notice. Life is never so bittersweet as when you are enjoying a pleasure that you may not be given the gift of again. Dawn, a rain shower, the smell of woodsmoke, the company of a loved one, the sight of a person who is trying even if they are failing...the imminence of Death makes us appreciate Life in a way that nothing else can. Until you have stared Death in the face close up, you don't really know Life, except shallowly, as a child does. And this gift, the priceless gift of appreciation, is something that you and your friend can give to each other.   nono And if you do this thing, I promise you this; in the end, you will consider it to have been worth doing.  yeah   

Yes, the dark is very dark, and sometimes very cold. I won't deny grief is a heartache, and one that time will heal, but never without a scar. Death is ugly; but it can also be inspiring, and educational, and even edifying, because it is life lived close to the edge, where reality loses all disguises.

The most important thing any of us will ever do is be an example; and few of us get to choose what sort of thing we become an example of. But whatever we are, whatever situation we find ourselves in, to care for another human being regardless, to be honestly ourselves with all our vulnerabilities and human failings, and to show love for another - that is something that teaches the whole world what a good example is. 

Amidst the darkness of grief, you learn that the only true light comes from the human heart; and forever more, you remember, and can see it.

So my advice to you after all these fine words is, try. It's only human to be afraid to fail, as your friends are; but you will at the very least grow as a human being, and be able to be proud that at least you tried. 

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Howlyncat
Elite Member
Joined : Jan 2005
Posts : 24909
Posted 2/8/2006 12:27 PM (GMT -8)
I have to agree with Snohare here and the others that tell you to stay at your friends side ....he needs you now more than ever ........Put yourself in his shoes just for a few minutes or hours try to come from this at his angle .....would you want your friends to "ditch "you??............I dont think so ........I am not putting you down at all I am only trying to let you know he neds you ,and if your other friends are telling you this stuff then really they are not being fair to you nor him........are the passed friends of his?...........I worked with nurses that totally would not look after HIV/AIDS peeps (many yrs ago) but I did and I learnt so much and felt what snohare says I did something worthwhile in my life I feel better for knowing each of them and yes it was so very hard when they did pass away but I had the opportunity of giving me for just a few hrs daily to them and they in turn help me to realize what TRUE EMPATHY is ........pleas stay his friend and let him know you love him no matter what ......make some good memories along this journey together ....thanks for posting and keep us up to date on you and him ...........as was posted peeps with this DD live longer more productive lives.........I feel Twinstride is so on the money here I believe you will stay to the end and be the better for it ............God Bless and be well .........Lyn
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snohare
Veteran Member
Joined : Oct 2004
Posts : 2088
Posted 2/8/2006 7:08 PM (GMT -8)

There's one vital thing I neglected to say, caught up in my memories as I was; and that is, of all the metabolic disorders that need some kind of a magic fix, Cystic Fibrosis is the one that leaps to my mind as having the most promising therapies in the pipeline.

Admittedly, I'm no endocrinologist, nor even medically trained, so my knowledge of the whole panoply of genetic disorders is incomplete; but I read reports of scientific papers on a weekly basis talking about gene therapies, and new techniques for delivering the specific genes needed for treating CF are in development. Most medical research reported as a potential cure is actually "if, maybe, then someday, perhaps". The one I'm thinking about particularly is known to work at delivering genes effectively in other situations; that's a whole lot more hopeful than normal. Okay, you wouldn't want to be holding your breath while it comes to fruition - but over a timescale of years, I'd sure as heck be thinking about my pension if I was a CF sufferer. 

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vietvet
Veteran Member
Joined : Jan 2005
Posts : 1510
Posted 2/9/2006 12:49 AM (GMT -8)
i don't normally post here, i have ulcerative colitis and i met lyn and snohare on the crohns forum. i saw snohare's post while viewing the major forum listings and got nosey (sorry, sno!). you've gotten some awfully good, insightful advice here and if i could, i'll tell you my story so far. when i first met my wife 10 years ago, within a week or so she shared with me the fact that she'd within the previous 4 years undergone brain surgery which had yielded a benign tumor that had been causing siezures. she showed me some very unglamorous pics of herself with no hair. in another life i might have turned tail and run. she was 10 years younger than me and absolutely gorgeous. i hadn't yet shared with her that i had UC. so i did. she took it and never batted an eye. all of a sudden it hit me square between the eyes that we shared something.......something that snohare had alluded to which is what snagged me here. when you go into a combat zone, you have to resign yourself to the fact that you may not go home....alive anyway. in other words for a year or so, you stare down the grim reaper. like sno said, you develop a real appreciation for every single day you are given. she and i shared that. i saw it in her eyes and she saw it in mine. and we talked about it. that was 10 years ago and we both are doing pretty well (she better than me). each of us could have ditched the other and never looked back. but, we didn't and to this day, when we look back on a memorable experience we shared, she says with excitement, "see, honey, we've got history!"

like everyone here has said, you really don't know what the future holds; he could outlive you. go for real love, not the shallow 'friends'.

vv
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LittleBird
Regular Member
Joined : Nov 2005
Posts : 36
Posted 2/28/2006 9:25 PM (GMT -8)

I think I have to agree with everyone who has posted a responce so far. as somone with CF I can tell you that there are 2 big fears when meeting and telling new people about CF. First is that they will be afrade to get close to me (maybe part of the resion I have never had a decent boyfriend) and second, that they will feel sorry for me and cling to me because they think I need a friend. it frustrates me to no end that people are so afrade of losing me that they won't even try being friends!

that being said, I have many friends who have CF, and have had some of them die. I myself have been very close to death from CF on 3 occations, and I can tell you that it is much harder to watch a frind suffering and dieing, then it is to be the one in the hospital bed.

my advice to you is to go to a CF website, learn all you can about it. then go to him and find out about his life with CF. be suportive, and make sure that there is much more to your relationship than simply discussing CF. and finally, stick with him through everything, to the very end!

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