The oldest person with CF

By 14 and living strong Latest Activity August 25, 2012 at 3:06 am Views 9,530 Replies 48 Likes 4

14 and living strong

I was just wondering how old is/was the oldest to ever live with cystic fibrosis. I believe that the average life expectancy is around 38 years old as of today. If anyone knows please let me know

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  • tomfoolery
    tomfoolery March 16, 2014 at 11:12 pm   

    That would be me at age 44 , I have fully systymic fibrosis not just in the lungs. In my late thirties I was told that everything would shut down by the time I was forty I think the doc said the oldest person with full blown systic fibrosis was just over forty in a wheel chair living in san fran. I remember I couldn't even feal my feet and thought I would be bound to the weel chair. I have reversed most of my symptoms, your basically looking for a cure for everything since it effects every organ and every system in your body.. Ive walked the walk so I can talk the talk.. Best advice advoid the docs like the plague which they are and JESUS said to peter your THINKING LIKE THE WORLD, remember the bible said the world was round when the world was telling you that it was flat.. As Jesus was the truth in his day , I am the truth of this day.. "Everything has been cured" anyway it would be nice to shine on but I need to go to bed, some quik tidbits


    "God chose him for his sacrifice for man"
    "Man is the light of the world"
    "I walk in the light"
    "What shall you do when the light of the world is gone"
    (4) "They shall steal your word as they stole mine"
    "My God is the same God of Noah"
    "You do not even give man a place to lye down"
    "The ONLY one that has ever gone to heaven (Sky) is man and the only one that has ever come from heaven is man"
    "I judge because I'm the son of man"
    (8)"The dark doesn't understand the light"

    remember its a narrow path NOT broad the original name of One of the many books of mine (refer to #4 on the list) was originaly supposed to be named " The Cure" but was changed to The Cure They don't ####### (you fill in the blank, refer to #8) .. I know your thinking this guy is crazy, yeah they said that aboat all of the chosen ones Noah , jesus ,Moses and John the babtist all were "crazy".. As they said to me "Why does God ALLWAYS CHOOSE MAN".. Anyway thank You to all the children of the light for your help in pushing back the darkness, the sheep and cattle don't see the blue skies and cleaner air but we do and my FATHER shall greatly reward you in my KINGdom that days are not numbered unlike this world which shall end not if just when. Paradise awaits, no more tears, no more pain, no more smog and plenty of sunshine. Remember its not Magic, the only way out of here is UP… As for the others focus on the words of Christ not the opinions of Christ that have been added to confuse you.. Lord Bless I love you all,, Ohh >>>>>TUMERIC <<<<<< Enzekel 4;9<< "everything the prophets said were true" SO STUDY THE PROHETS…

  • richardimnotdead
    richardimnotdead July 25, 2013 at 9:34 pm   

    im 56

  • 14 and living strong
    14 and living strong July 25, 2013 at 10:17 pm   

    God bless, how are you doing ?

  • leah df508.
    leah df508. July 23, 2013 at 10:19 am   

    Some one at my hospital was 80. X

  • keungfamily
    keungfamily July 1, 2013 at 9:50 pm   

    My dad was sick from birth (1947) but didn't get officially diagnosed until 18. He lived a hard 41 years but didn't end up dying from CF directly. He died of a complication after a hernia repair surgery & enlarged heart.

  • keungfamily
    keungfamily July 1, 2013 at 9:51 pm   

    And yes, he was not infertile and my parents had me quite by accident. Oops. I do not have CF but my son does (he's 10).

  • Tiffany32
    Tiffany32 July 1, 2013 at 9:44 pm   

    Oops didn't work mean to send that ;)* im 33 diagnosis at birth, no symptoms until july 4th 2012 .and o my the last yr has been a battle. Im soo sick. Life changed in a split second! Does this reverse or once its shown its self ur jus screwed til it consumes u?

  • Niya's Mom
    Niya's Mom September 12, 2013 at 11:13 pm   

    Hi Tiffany. Im just seeing your post ad I'm new to this site. My daughter has CF, I'm glad to see you lived a long life with no symptoms. (My daughter has none to date) i pray that your battle is short lived and you can get back to life as you knew it. How are you feeling now? CF wont consume you if you don't let it. Stay strong!

  • 1gymmom
    1gymmom April 3, 2013 at 11:01 am   

    Oh and I was diagnosed at birth.

  • 1gymmom
    1gymmom April 3, 2013 at 11:00 am   

    I am 46 with my last time being in the hospital or having an IV was 8 years ago. I have a FB CF friend named Judy who is 67!

  • Jennifer<3
    Jennifer<3 February 11, 2013 at 10:47 pm   

    My wonder from all this, is how the heck these people older than say 50, get diagnosed at that age, and yet it never occurred not their doc, or to them that they have some sort of problem?? You would imagine that if you get sick enough for a clean out in one year, how in the world do these people make it fifty or as someone said eighty!!?? I just don't get it!!

  • tomfoolery
    tomfoolery March 16, 2014 at 11:22 pm   

    They get it that's why they use the symbol of the serpent wraped around the angel, its a little flock and from the look of your picture your Gods flock, read what jesus says "Your father is that of the devil, there is no love in you" focus on the words of christ

  • 14 and living strong
    14 and living strong February 11, 2013 at 10:48 pm   

    I think they probably just have an extremely mild case, so mild I'm fact that a doctor would never contemplate the idea of that particular person having cf

  • Jennifer<3
    Jennifer<3 February 11, 2013 at 10:52 pm   

    Well yeah I guess that makes more sense-not that fair to count them since it's so mild, but cf is cf. some worse than others.

  • 14 and living strong
    14 and living strong February 11, 2013 at 10:53 pm   

    Exactly no matter how serious your condition is,
    You still have it and it may be mild for 10 years and then out of the blue it could get alot worse and fast

  • Jennifer<3
    Jennifer<3 February 11, 2013 at 10:55 pm   

    Wish that worked backwards too, out of the blue you could be healthier too..but I don't think so.

  • 14 and living strong
    14 and living strong February 11, 2013 at 10:56 pm   

    You never know. They could find a cure but I think cf has done enough damage to certain parts of your body or at this mine that at this stage it's irreversible

  • Jennifer<3
    Jennifer<3 February 11, 2013 at 10:58 pm   

    Good point, never thought of the damage already done. But who knows, maybe you could still cure it, but the damage would stay.

  • Holliewood
    Holliewood February 11, 2013 at 9:59 am   

    My mom used to be a nurse down in Chapel Hill, North Carolina before we moved to the western part of the state and according to them there was a woman diagnosed in her 80s with CF. Apparently she came down with a bad case of pneumonia and when the docs ran some tests they found out she had CF. She never had a problem with it until she got older and wasn't as active as she used to be. Which I'm sure anyone that age except very few people wouldn't be getting around very much either.

  • Kali/Kayla
    Kali/Kayla February 11, 2013 at 9:18 am   

    A lot of people thought that Albert Einstein had cystic fibrosis.

  • nathan's mom
    nathan's mom October 26, 2012 at 1:19 pm   

    Johnne, u have me laughing so hard about the coloring book and crayons. I hope you colored some nice pictures, ha ha! I have to say you have brightened my day on more than one occasion, so for that? Thank you!!

  • Johnne T
    Johnne T October 26, 2012 at 2:08 pm   

    Well thank you for the very nice comments. My mom asked me, the other day, what I thought of something from cff. And I had to ask what she was talking about. Seems that since it became common knowledge what I thought of the stuff that cff sent me, they took me off their mailing list. I'll be damned. Now I feel left out. Oh well. I'll get over it. Thanks again tho.

  • fightcf
    fightcf September 7, 2012 at 10:18 pm   

    My grandmother has cystic fibrosis and she is in her early 80s I know that there is a guy that is in his late 60s as well

  • leah df508.
    leah df508. April 3, 2013 at 7:35 am   

    Do you no what mutation she has ? Where r u from xx

  • Tiffany32
    Tiffany32 November 6, 2013 at 2:16 pm   

    I lived with a another cfer that got sick an had a pik line. I had never been sick before he got sickly then a month later i showed my first signs of cf as an adult. I am 33 like i said an i have to wonder if i caught phudomonis from him?? I wad in the hospital the first year of my life. But I haven't shown any signs of cf since the age of one until being around and living with another cf patient. Could i have gotten sick from him?? Well i was sick one solid year strait. Then spring came an I've been off all meds and healthy all summer!! But :( its getting cold ,an i caught a cold and my lungs aren't feeling so great :( I pray my nightmare is not beginning again? !!?? Six months healthy after 12 of pik lines an worries was a blessing, funny how this can change sooo fast!

  • Johnne T
    Johnne T September 7, 2012 at 10:25 pm   

    When was your granny diag? I'm pretty sure she's going to be in the exceptional adult category.

  • Johnne T
    Johnne T September 1, 2012 at 1:07 pm   

    To my knowledge the cff doesn't keep people info. More of a whole ballpark sort of group. Unless they've been up to something I haven't heard about. I think I get pretty much get all the stuff they mail out.

    In my experience, I wonder if sometimes they have to ask for directions to get to work, and back home at night. You know. Like a goose, wake up in a new world everyday.

    I know someone from there will probably read this, and blow a gasket. Get their feathers all ruffled. (Note the goose reference.) Start lecturing me about all the good they've done. But maybe that's the problem. To damn many lectures.

    I've been getting stuff from them for years. And not once have I received something addressed to me as the cf patient. Always addressed to me and my cf child. Once, several years ago, someone sent a small package to the cf person in the house. Don't remember who. They said they got my name and address from the cff, and they thought that they sent something that I would enjoy. It was a coloring book and crayons. I didn't know if they thought I was a kid, or they were commenting on my maturity level.

    Well cff, save the lecture. I've heard all about it. I'm a cf adult. I am not a cf child. Am not, am not, am not.

    Well I'm not sure where all that came from, but I feel better. Time for lunch.

  • ladybug girl
    ladybug girl September 1, 2012 at 9:32 am   

    Wouldnt.Tha cystic fibrosis foundation have a record of age? In some of there research…my daughter is 11…and Docs almost transplanted at 7…if you would have told ME five years ago…WE would ME Home and id Be drinking coffee reading this app and she Be in sixth grade going to School i wudnt have believed you!

  • LucyLou13
    LucyLou13 August 30, 2012 at 6:25 pm   

    These life expectancy statistics vary depending on who they are about. If you had three who died at 30, the life expectant would be 30. If you had two 30 year olds and a 2 year old, the life expectancy would be much lower at about 20

  • LexingtonVlair
    LexingtonVlair August 29, 2012 at 8:05 pm   

    I read 78 is the oldest. I was diagnosed at 32, so the 37-38 thing isn't crossing my mind

  • richardimnotdead
    richardimnotdead July 25, 2013 at 9:37 pm   

    dont worry about the age thing when i was young everyone told i wont live past 18 im 54 now, dont worry.

  • Johnne T
    Johnne T August 29, 2012 at 8:18 pm   

    That would put you in the exceptional adult category. 78 was the oldest. Now I've heard low eighties. Maybe the same person. Also exceptional adult category. Please keep playing!

  • Mom to Garret & Maggie
    Mom to Garret & Maggie August 28, 2012 at 8:29 pm   

    I have a relative who is in her mid to late 50s. I'll have to get back to you on her exact age.

  • danpalumbo
    danpalumbo August 28, 2012 at 6:20 pm   

    Some are in their 80s. Have faith. Exercise and be compliant. I'll be 56 soon. Dan

  • Johnne T
    Johnne T August 28, 2012 at 6:42 pm   

    Ha! I knew there was someone out there older than me. So when do you turn 56?

    And there's another way I can tell you've been doing this awhile. You signed off.
    My sign, when this was an email thing was, "If you need me, you know where I'll be. Joe's Pub and Topless Bar, third seat from the left. Watch your back, John T". If I sign off now, it's just Wyb, John T

  • bellesmommie
    bellesmommie August 25, 2012 at 12:22 pm   

    It'd definitely be interesting to find out. I'd like to know the oldest that was diagnosed at birth or within their first year of life.

  • Michaelswife
    Michaelswife June 9, 2013 at 1:59 pm   

    I just joined so I could comment to you… I have a good one! My husband will be 45 this week (diagnosed as a baby, not a mild form). Our next door neighbor is the same age (also, diagnosed as a baby, not a mild form). I found out she had CF a few years ago when I stumbled across her online. BTW, they are both enjoying life and doing very well.

  • Johnne T
    Johnne T August 25, 2012 at 9:08 pm   

    See! Now we're setting some rules. Categories established. Okay we've got birth, first year, one to five, after five, and adult. And just for good measure exceptional adult, for those older dag. Cfr's. What else? Come on people. I ain't gettin' any younger.

  • Johnne T
    Johnne T August 25, 2012 at 9:11 pm   

    Hey! How about you, Fourteen and LivStrong. You started this, let's hear your ideas.

  • Tiffany32
    Tiffany32 July 1, 2013 at 9:40 pm   


  • Johnne T
    Johnne T August 25, 2012 at 8:04 am   

    You know. That's something that I think about lots of times. I've known several cf's that were older then me. And still do. I'm not even the oldest in my clinic.
    Some I know are gone. Passed. Kicked the bucket. And at least one of them still owes me $27.75. Clatu, nice guy, the welch. Don't guess I'll see that change anytime soon. I'll pay ya back, he said. I'll get dinner next time, he said. But I digress. And I've known some people who were older then me that, now, I don't know how they are. You just lose touch. One of those was a guy we called Doc who was a prof. in Boston. One of those nose in the air, ain't won a football game since they invented it, ivy league schools. He was in his thirties when he was diag. (Ya! I know.) Korea vet and in his sixties when I knew him. Is he still alive? Don't know. But I'd like to think so. Boy did we have some fights. We could bring a chat room to a halt. Then take a brake for coffee(He drank hot water. Some people call it tea.) and go right back at it.
    I read an article a few years back about a lady in her sixties that was accidentally diag. during a volunteer gene study. She wasn't sick and showed no symptoms. So she brings up a question. Did she cheat, or does it matter when you were diag? I can see some person, in their eighties, being diag at their death bed. The dr telling the family that he has cf and how rear it is to live that old. And his loving wife saying that his stinking butt has been trying to die for years.

    So how old is the oldest? I don't know. Maybe we should define the rules I'm not it, and I don't want to be. But I do plan sticking around awhile. Breaking the record of worlds oldest cf I'll leave for you kids. Good luck! Call the Guinness people.